CONSECUTIVE CHAPTERS: FROM BEGINNING TO LAST CHAPTER WRITTEN    

 Here are all the chapters we've written so far, in order beginning at Chapter One. I've Provided Three Headings: Early Stage, Later Stage, and Living Alone after Lewy Body to help you know where you are in relationship to our weekly postings. note that you can go to "Alphabetical List of Chapters" on the left side of the main page to identify a specific chapter you wish to read and then follow its link to the "Consecutive Chapters" page.

                                              Early Stage: 1-56        Later Stage: 57-155         Living Alone: 156-End

                                                                  EARLY STAGE: CHAPTERS 1-56

Ch.1: Hallucinations from Outside and Inside.

                        Mornings are interesting in our Lewy Body world. Pat frequently awakens in the midst of a dream world in which she is actively working, studying for a test, worrying, counseling, achieving, etc. I think these dreams are pretty much the same as mine or most peoples.’ But just because she awakens doesn’t mean the dreams quickly fade away. Instead, they hang around, almost as if they were populated by creatures insisting that the dream is obviously real, and that action is still required. What kind of action? Making a presentation; helping someone or an animal in trouble; finding a lost child; counseling a client.

            These hallucinations were worse before Pat began taking generic Aricept, a drug originally designed for people with Alzheimer’s disease that actually works better for Lewy Body patients. The scariest pre-medication time for me was when Pat woke up and searched the whole house for a missing child. I tagged along and was able to convince Pat not to go outside looking for this child – it was 15 degrees below zero out there. What was scarier than Pat’s searching was my total inability to convince her there was no child and her utter conviction that she needed to find her. I was terrified that Pat would go outside in the cold and freeze to death.

            Now Pat’s hallucinations are milder. I’m less scared. That means I can think about how to respond better than “Pat, Pat, that’s a hallucination. It’s not real. You’ve got to let it go right now.” That’s when Pat turns angry eyes on me, and I become someone who can’t see the obvious truth that this other world is real (and sometimes dangerous). Getting angry and frustrated doesn’t work. I know that, of course (my specialty is anger management and I’ve written several books on that topic) but sometimes my panic overwhelms my ability to stay calm.

            So, what does work better? Sometimes just going along with the hallucination for a while. After all, reality is a fluid concept. We all live in our personally created fantasy worlds much of the time. If there is no immediate emergency or danger then why not just listen, ask a few questions to briefly enter Pat’s dream world.

            But lately we’ve established somewhat of a routine. Pat wakes up in midst of a dream state. She describes it to me in a questioning manner: “I passed the test, but I don’t know where the lecture hall is. Do you know where?” I might say that I don’t. Then she looks around, sees that she’s not in a lecture hall, and asks me if she is having a hallucination. I carefully affirm her (“Yes, I think so” as against “You sure are and snap out of it”). Then the lecture hall flows away, sometimes to return a couple times before our shared reality takes over. Time for breakfast. Time to share one single good enough world. For now.

 

Pat’s hallucinations from Pat’s perspective.

“I’m getting better at recognizing when I’m having a hallucination. I’m less confused now, less scared. Sometimes I can even tell my hallucinations to go away and they do, but not always. I feel more in control of my life now that I can tell better when I’m having a hallucination.”

For example, there were a group of people (about eight) sitting before me, and one guy and his wife were talking about what trouble they had getting along, and I told them that it was not my job to figure out what they wanted from each other, but their job to figure that out and to share it. This couple never “came back” and I began to realize that as my life was changing, I did not want to do this sort of negotiation between couples. I counted them among the folks who “showed up in my life” so I could say goodbye to that business. [Pat is a retired mental health counselor, so this is the “business” she refers to here].

-----I’ve had lots of folks who come to see me seeking help from me, but am slowly but surely just beginning to say, “this is work I don’t do anymore.” And then they go elsewhere.

 

There are also rather weird looking people who show up to bother me, and with whom I ask Ron to help me “I need to leave this place... just hold my hand and walk with me out of here.” He always does help me when I’m scared to take direct action..  or to steer me in another direction when I am certain one I don’t want to go in is nearby,…I consider Ron my soulmate when I’m really scared, and he always quietly reassures me. I think, in fact, that this I because he is my soulmate.

 

The worst hallucinations are when garments hanging in the hall take on threatening projections, or I sense that there is a child or small being who is being threatened by scary or salacious things, or if there is a large male shadow hanging

 over everyone and I need to be guarded or helped in some way. Or, somewhere a raging female spirit, shrieking at me, a spirit chasing or threatening me.

There is one other set of hallucinations that weird me out—one was a young woman with an oddly hidden face, as if she had been squished together. She   shut her face away inside, until I caught a sense of great threat from ways she did that. Then I refused to look at her, and I told her to go away, and told her I was not going to be available to her. Finally, I felt her hatred of me, and she has now left.

+++

There is one other set of hallucinations I have had—people who tell me their name as they go by—sometimes down the hall in my house. One is Margery, and she has a big limp. I always remember them and call them by name. But if I follow them, they are no longer there. They are happy, and friendly, and refuse to bother me in any way—or even stay. I sort of know that they are there just checking to see that I’m ok. I love them.

+++

 

Ch. 2. Am I a Helicopter Husband?

            Today I reached out and poked Pat’s leg. Why? To see if she was accumulating excess fluid in her body. Unfortunately, I forgot to ask permission. Big mistake! Typical, though, of a helicopter husband.

            You probably have heard of helicopter parents. They hover around their kids, over-protecting them from all the terrors they imagine: not looking good, being abducted by aliens, too much You Tube/Facebook/, dressing incorrectly for the cold. No kid likes a helicopter parent.

            Sometimes I think I may be a helicopter husband. I’d like to say I have a few helicopter husband traits, but Pat would say I’m understating the truth. So, what does a helicopter husband do? He worries, worries, worries about what calamities might overtake his wife, not necessarily weighing the likelihood of these tragedies occurring. Will Pat slip on that piece of paper over there on the floor? Maybe. Better get it picked up right now. Will she get lost in the store? Well, it’s happened before so it could happen now. Better keep an eye on her – better keep both eyes on her.

 Will Pat take her medicines on time? “Probably, but so what if it’s a couple hours late? It won’t kill her.” Come on, that’s not what I think. It’s more like “I know she’ll forget and then she’ll have a heart attack and it will be all my fault for not reminding her (several times if need be) to take them”. Helicopter husbands assume the worst.

Now, in my defense, Pat has always been a little careless around survival concerns. She forgets to take her coat in the winter, much less wear it. Good dietary habits are not a large part of her culinary repertoire. Getting lost has been a good thing much of her life, as in “Oh, I got lost driving around but that’s the fun of it.” Also, in my defense, we are facing life and death matters every day with Lewy Body disorder. Thirdly, this whole Lewy Body thing is like living every day as if it were Halloween, waiting for the next scary creature to jump out of the woodwork. Finally, I think my children would like me to be more of a helicopter husband than I am, believing I don’t keep their mother as safe as they would. (Beware the helicopter adult child).

Nevertheless, helicoptering is not really a good thing to do. Pat gets angry with me when I am too “thoughtful.” She feels distrusted, enveloped, smothered, and disrespected. I then back off, or at least I try to back off, thinking that I could quit helicoptering if only Pat would be more careful. If only Pat would think ahead. If only she would be like me. But Pat refuses to quit being Pat, Lewy Body or no Lewy Body. She keeps demanding autonomy. She needs more space.

OK. I’ll just say the Serenity Prayer and let go. Sure, I will. Or not. Or for a while but not long enough. The reality is that I try not to intrude and to remind myself that Pat is still mostly able to take care of herself. But mostly is a very fuzzy word. Will the next event be the one I should intervene upon?  Could just letting Pat be Pat result in a terrible fall? Every situation is unique. There is no final resolution to the helicoptering issue.

 

Helicopter husbanding from Pat’s perspective.

[Pat to Ron] “You make me feel like I can’t do anything when you get worried and try to stop me from doing things. It’s like you’ve given up on me.”

***

 Pat’s perspectives: on the helicopter husband.  He’s always worried about something and at the same time trying to get everything done.  He keeps a close eye on me, and on anything I may do that would worry him. He reminds me and reminds me to take my meds, even if I have already taken many of them already, and just need more water to finish them up.

     Ron works his heart out doing everything he can possibly get done, and then more. He also attempts to keep rounding me up to pick up and sort things I can’t quite master as quickly as he would, and the habits I have had way too long to change so quickly to choose in the ways he does.

  Part of his helicoptering is that he has lost his patience with me because I’m so different from him. Change comes slowly for me, whereas he gets his ideas all arranged in his head and does ideas on how and what I ought to do, or how I ought to change things to be more like him.                             

At the same time I see his worry and concern and love for me, and his deep caring.

I also see, some days, lists of things to do poking out of his head.  And at the same time, I see him thinking ahead of me, or looking behind at me to see what he’s missed or what, just in case, I’ve already lost track of since he just looked.

I wouldn’t be upset if he trusted me more.

    All said, I love him much.                   

                                                                                                                                                                     

 

Ch.3: Noise.

            Pat and I have been going to a Scandinavian restaurant named the Norske Nook for over 20 years with our friends Ed and Judy Ramsey. It’s a local restaurant made famous for its delicious pies so sometimes it gets very busy and noisy as the adults at each table talk, while children yell, and babies scream. We never cared much. The pie was too tasty.

            Things changed this summer, though, at the height of tourist season. One time we sat near two tables, one occupied by 4 parents and the other by 4 shall I say “undisciplined” kids. Pat tried to be OK but gradually I saw in her eyes something I interpreted as fear and then panic. I didn’t know if she was going to run or smack those kids (Later she told me that her choice would have been to go after their neglectful parents). She did manage to get through breakfast, but I stayed worried throughout the hour. Fortunately, the parents eventually split the kids up so two parents were at each table with two kids. Otherwise I don’t think Pat would have been able to stay seated. (Pat: HE says.)

            Pat tells me that she cannot handle chaos. It’s not only the noise but the crowded tables, the waitresses moving around, the line near the door of hungry customers eagerly eyeing the diners, etc. Chaos. I remember the line from a poem by Yates: “the center will not hold.” I think her brain must work hard to maintain structure, to keep her center from dissolving into pure chaos.

            Naturally, I want to protect Pat. We’ve considered where in the restaurant would be quietest, but that varies with the diners. We do request a table away from people with children whenever possible. I’ve even suggested a couple times we just quit going to the Nook. Pat’s declined. It’s one part “I should be able to handle this” and one part “I won’t let Lewy Body stop me from doing the things I’ve always done.” [Pat’s added note: Especially when I like to do those things]. She’s right, of course, but maybe not realistic. We may have to curtail predictably noisy situations in the future. Perhaps we are like a football team with a lead near the end of a game: let the other team make a few yards at a time but don’t let them score quickly. Concede a few restaurant visits but maintain your sanity.

 

Noise from Pat’s Perspective:

[Pat to Ron] “I just can’t stand it when people are yelling. It hurts too much.”

Sometimes when others around us begin to talk or laugh loudly, or disagree, or children begin to fight, with each other or their parents, or scream and cry to get what they want, I will feel absolutely buried in the noise with the back of my head falling off.  Others see my discomfort quickly, but I seem never to know what to do. My face contorts, I begin to shake, and sometimes I count on Ron to see this and help me move away. I mostly feel powerless. But I know that I am not powerless. I may begin to read something, to avoid the noise and that often really helps.

When the noises continue, I tend to curl up in a ball and look helpless.

 

Ch.4. Good Days.

Coping with Lewy Body has made me (and Pat, I’m sure) more appreciative of the natural beauty in our Western Wisconsin homestead. Almost every day lately we’ve driven through the Autumn hills, watching leaves turn color and then fall in the breeze, looking with our two dogs (Levi, a collie mix, and Franklin, our three-legged chow chow mix) for deer, foxes, and eagles. One day at dusk we even came across a flock of turkey vultures settling in to roost on several trees near the road. Ugly as ever, of course, but still a family with kids, “teens,” and parents. Pat remarked that one of the more adolescent birds was helping to rearrange the family nesting spots, stating that was good “family-oriented” behavior.    

             As mentioned previously, Lewy Body is a very unpredictable disease. Pat has good hours and bad hours, good days and bad days. My stress level parallels her experience. On good days I relax some, only to tense up and become more watchful on the bad ones.

            Here’s what a typical good day looks like:

7:00 A.M. – 9:00 A.M. Wake up, read in bed, breakfast, shower together. Morning medications.

9:00 A.M. – 10:30 A.M. A long ride in the country on roads where I can drive as slowly as I want, and Pat can tell me to stop so she can take pictures.

10:30 A.M. – noon: working on a jig saw puzzle. Pat frets that she can’t put the pieces together as quickly as before. True, but she’s still faster than me and sees patterns I miss.

12:00 P.M. – 1:00 P.M.: A light lunch, maybe grilled cheese sandwiches and mandarin oranges.

1:00 P.M – 3:00 P.M. Pat may take an afternoon nap while I conduct telephone supervision sessions with people seeking certification as domestic violence specialists through the National Anger Management Association with which I am affiliated.

3:00 P.M. – 4:00 P.M. Pat and I work around the house cleaning, sorting clothes, or doing dishes.

4:00 P.M. – 5:30 P.M. We read together in our downstairs cubby area, a quiet place that broadcasts a sense of calmness.

5:30 P.M. - 6:00 P.M. Time for the national news.

6:00 P.M. – 7:00 P.M. Pat watches television (usually political news) while I make supper and then we dine.

7:00 P.M. – 10:00 P.M. Puzzles, nature shows, photographing our mineral collection, crafts. A variety of options depending on Pat and my energy levels.

10:00 P.M. – Night-time medications and bed.

 

Life has certainly become more simplified for the two of us. No more professional trips around the country. No more hectic therapy schedules, helping people to the point of exhaustion. Fewer forays into the world for social events, symphonies and shows, even visits with friends. And, frankly, I’m happy with what’s left – much more time together to talk, make love, drive around, play with the cat and dogs, bake pies and cook dinners. Time enough in the present to enjoy the sunshine.

Each good hour is a joy. Each good day is a treasure.

            I’ve just run across a passage by the mystery writer Louise Penney* in which she describes her life with her husband Michael as he weakens from dementia. She says: “It’s not all bad. Far from it. There’s clarity, simplicity and knowing what really matters.”  That’s exactly true for us as well.

*Louise Penney, “A Great Reckoning.” 2016. St. Martin’s Press, p. 499.

 

Good Days from Pat’s Perspective.

Ron’s off doing his things—getting groceries, sand, animal food for the horse, birds, etc.—paying bills, writing checks, etc. I have a fair amount of quiet time at home, sorting more of the stuff that seems to have fallen out of control., reading, puzzling, etc.

Ron comes back regularly, usually takes the dogs for a ride, we work outside or inside, I chunk rocks, meditate on them, carry them from one place to another to see them differently. He and the dogs take me for travels in fields, snows in hills, lanes, curves, hills, wildlife areas. Colors lotsa places…whatever is there. l like the countryside long travels.

 

 

Ch. 5. The Need for Support.

            If someone called me seeking advice and told me that his or her partner in life had been recently diagnosed with Lewy Body, here’s the first thing I’d say:

            DO NOT ATTEMPT TO DEAL WITH LEWY BODY DISEASE ALL BY YOURSELF. GET AS MUCH SUPPORT AS YOU POSSIBLY CAN.

            I consider myself a reasonably competent and independent person. I’ve always been good at figuring out what to do in difficult circumstances. I think of myself as a good problem solver. And so is Pat. But, believe me, no one or two people can match up against Lewy Body Dementia. You can’t figure it out. You can’t defeat it. You can’t outlast it. No doctor can give you a miracle drug that will make Lewy Body go away (at least not at the time of this writing). Living with Lewy Body is like running a perpetual marathon, except it’s not a 26-mile run but more like an endless jog through sand and mud. Exhaustion, both physical and emotional, is inevitable. And that’s when you’ll need support.

            In the whole state of Wisconsin, as of this writing, there are only three support groups for Lewy Body caregivers. There are, though, many groups that are either specifically for Alzheimer families or for any dementia diagnosis, and these can be very helpful since Lewy Body and Alzheimer’s share many characteristics. But I’m fortunate to live near Eau Claire, WI, the home of one of those three Lewy Body caregiver support groups, founded about seven years ago by Amy Lokken (and now facilitated by Janell Romatowski) after Amy took care of her mother who had Lewy Body until that woman died. Amy discovered that there was little support for family members and decided to start the group to lessen the isolation Lewy Body people feel that makes the problem so much worse. We meet once a month. As a relative newcomer to Lewy Body I have found the group to be a font of information – for example: how to respond to hallucinations; sources for in-home professional caregivers; when to start thinking about memory care units; how to maintain a sense of humor in the face of calamity. But the emotional support has been even more critical. A couple times I’ve arrived shaken by something that had happened recently, perhaps Pat having a bad fall, and received not just a hug or two but their deep understanding of my pain.

            Great, but what about Pat? She needs support too. After all, she’s the one with the Lewy Body diagnosis! First, we found a virtual group that meets about once a week through the National Lewy Body Association. That led us to a support group for Lewy Body couples in St. Paul, MN run by a wonderful woman named Paula Biever. True, St. Paul is 90 miles from home, but so what? We drive there the night before, attend the meeting from 10 a.m. to noon, usually head to our favorite rock shop, and drive home. (We are also blessed with excellent neighbors who watch over our two dogs, horse, and cat while we are away). We’ve met other couples at this group who share our struggle and experiences. On our initial visit I listened to five Lewy Body people, including Pat, compare their hallucination experiences. They found common denominators (Many involve children) while laughing at the absurdity of it all.

            I look forward with real excitement to these groups. They help me remember that life can be good enough and good enough is a whole lot better than terrible.

            There are two other support groups I want to describe. First is family. Two of our three children live in Eau Claire and the other in Rochester, MN, only a couple hours away. They stand ready to help us at all times. Of course, they also lead very busy middle-aged lives. But we now have holiday and birthday gatherings at their homes. They’ve eased our burden of family responsibility, for which I am grateful. I’m sure that as Pat’s condition worsens, we will need them more and more. Right now, I sometimes think of them as my army in reserve.

            And then there are friends. With Lewy Body I would define a good friend as someone who doesn’t let Lewy Body change the quality of our relationship. Here’s an example. I mentioned before that we’ve gone to a particular restaurant for over twenty years with Ed and Judy Ramsey. Before Lewy Body all four of us talked at the table about the same amount. Now it’s more like 30-30-30-10. Pat is far quieter than before. No matter. We’ve all adjusted. Things change but friendship stays the same.

            Don’t go it alone. Isolation makes everything worse. Get support.

 

The need for support from Pat’s perspective.

[Pat to Ron] “I really like the St. Paul support group. We go there together instead of him going to his group and me going to one just for people with dementia.”

 Sometimes it bothers me that more of the people in his group are older and spend quite a bit of time telling him that he should start looking now for when he will have to put me away in a “memory place”. I assume that that is because many of them are older and have run into the issues about what they have to do already. And he tells me that they say it is very hard to find a “good place.”

     In the St Paul group, where we have married for 53 years, there are three other couples who have been married longer, and although at least one of them has separated for now, it is obvious his wife still loves him, although we think they may have had to separate because he has tendencies to be churlish with her. But we really do not know what is going on there. And this group that we attend together is really good for us.

   

    

 

Ch. 6.  Some Days You Just Want to Cry.

            Today was one of those days when everything we did was interfered with by Lewy Body. Christmas shopping became a confused muddle as Pat tried to find a small sized woman’s sweatshirt in a store that seemed to have every item of clothing except a small sized woman’s sweatshirt. Then we met an old friend who immediately stated that his wife had Alzheimer’s disease. Pat of course told him about her condition only to feel that she couldn’t get away from her diagnosis even in a department store. So, then we tried to have coffee at a bagel shop, but their latte machine kept screaming so insistently we had to leave (See the chapter on noise).

            Where are denial and minimization when you most need them? It is hard, maybe too hard, to face the reality of Lewy Body head on like we did today. Pat put it perfectly: “I can’t get away from it. Everything I do is screwed up. I feel screwed up.”

            All we could do was to drive home and head to bed. Naptime. Hoping that when we awakened Lewy Body would still be sleeping, at least for a while. But even that didn’t help much. Pat was up in the middle of the night with vivid hallucinations about gardening with her students. She seemed to realize something was wrong, though, because she talked out loud about how she was “disintegrating.” That term captures her experience, at least as far as I can tell from the outside: when Lewy Body strikes Pat’s mind, she cannot integrate what she sees and hears into a coherent picture. Her hallucinations and delusional beliefs partly fill in the mental voids, I think. They provide immediate relief from confusion and chaos. But hallucinations and delusions aren’t real. Eventually they break down in the face of reality – and that’s when Pat’s mind “disintegrates.”

            I want to add that normally I take pride in directly facing difficult situations. So does Pat. Also, normally one of us can comfort the other if trouble sets in. But not yesterday or today. Today there was no comfort or relief. Lewy Body was in charge.

 

Some Days You Just Want to Cry from Pat’s perspective.

[Pat to Ron]: “I can’t get away from it. Everything I do is screwed up. I feel screwed up.”

What now? Most often this kind of feeling comes when I can do nothing to change a given situation and I am sure that I have done something wrong. Sometimes that’s true—others, I just am sure I’ve blown it, and try to cry myself quietly to sleep.  I try to believe what Ron says when he’s not mad at me. That helps me.

Sometimes I just go to bed and sleep—or try to.

The hardest times are when I know I’ve got something wrong done, and a hallucination takes over. Those hallucinations scare the heck out of me. Like one hallucination in which I was sure Ron had harmed himself.

 

            

Ch.7. Who Should I Tell that I’ve Got Lewy Body? Acceptance, Embarrassment, Shame and Trust.

            Do you think this is an easy question to answer? Think again. Let’s look at some possible answers.

            Tell nobody. After all, it’s nobody else’s business.  Well, this won’t work for long. I agree that nobody has a right to know. But trying to hide the truth from friends, family, work colleagues and others is futile. First off, many of these people already know something is wrong. They just don’t know what. Secondly, many of them will eventually be needed for help and comfort (See Ch. 5: The Need for Support.) Thirdly, keeping this secret may lead to isolation and depression.

            Tell everybody. Why not just take a deep breath and announce to the world “Hey, everybody, guess what? I have Lewy Body Dementia.” Well, this won’t do either. There are small-minded individuals out there who won’t understand and will say mean things. And there are others, probably more people, who might act condescendingly. And there are gossips who will virtually take out an ad in the newspaper to make sure everyone knows about your “problem.”

            Tell only the people you trust.  Do you mean me, Ron, the caregiver husband, or do you mean Pat the Lewy Body person, should decide? I can think of at least one individual whom I trust but my wife distrusts. And what does the word “trust” mean? Trust they will be caring and kind? Trust they will be helpful? Trust they won’t suddenly vanish from your world? Trust they will keep your confidence?

            Ok, then, trust your gut to decide whom to tell. Unfortunately, trusting one’s instincts doesn’t always work (I often told my angry clients never to trust their gut because it usually led them to make terrible choices). Besides, we’re talking here about someone with brain issues that can lead to poor personal and interpersonal decisions.

            There is a deeper issue here as well. Shame. It’s hard to feel good about yourself when you can’t do stuff that used to come easy, when you can’t think clearly, when you’re not sure if what you see in front of you is real or a hallucination. I’ve noticed with Pat that sometimes she feels OK about having Lewy Body, sometimes it’s an embarrassment, and sometimes she feels ashamed and humiliated. When she feels ok, she lets people know about her condition; when she’s embarrassed, she doesn’t want to talk about it; when she’s ashamed she actively avoids people. Furthermore, she might feel ok talking with a group about Lewy Body one day but feel too ashamed even to be around them the next. She may even feel bad about having exposed herself to these people in the past.

            It would be interesting if Pat could “fully accept” her condition. But I couldn’t if I were her. It would be great if she felt no embarrassment or shame. But I’d have these feelings if I had Lewy Body, at least sometimes.

 I will say most of the time Pat grudgingly accepts that Lewy Body is part of her life. So do I, most of the time. I never feel shame for her. Pat is who she is, and I feel proud to be her husband.      

            Let me go back now to the original issue: Who should I tell? As a caregiver I’ve learned to be careful. I try never to mention Pat’s diagnosis to someone new without first asking Pat for permission. Occasionally I’ve slipped, though, usually when I’ve felt discouraged or in need of sympathy. And once it’s said you can’t take it back.

Who Should I Tell that I’ve Got Lewy Body? From Pat’s perspective:

            [Pat to Ron]: “Ron, go back and review the Lewy Body book. Look at all the things that go wrong when someone has Lewy Body. Would you want people to know if you had all those symptoms?”

Lewy Body is a complex set of functions, and those functions can affect ability to think Rationally all the time, deal appropriately with Hallucinations, and all this likely includes an inability to differentiate between a behavior and what others expect that behavior to produce.

  My tendency is to not tell people who I know have very strong feelings about what is right and wrong. It’s rigid people who see things like hallucinations and say “Oh my goodness, that is weird and awful. It’s sad and uncontrollable. I’m not sure I want to be around her.”  I don’t want to tell them about Lewy Body because if I have to explain what Lewy Body is, it will include a lot of things they won’t like but if they insist I’ll tell them. 

Ch. 8.  “Showtime.”

             

             In our book club the book of the month was The Namesake, by Jhumpa Lahiri. It is about a family that immigrates to America from India. Pat proceeded to make several thoughtful comments on the conflicts immigrants face as they try to adapt to their new country’s habits and mores. No confusion. No unfinished ideas. It was as if Lewy Body had decided to take a coffee break.

People in the Lewy Body community label this kind of experience as “showtime.” They note that people with Lewy Body try to look as good as possible before an audience such as friends and family. This takes lots of energy since Lewy Body is being suppressed for a while. Later, that individual will probably need to rest and might even temporarily display more Lewy Body symptoms (or maybe not, Pat adds.)

            I don’t like the term “showtime” becomes it implies that people with Lewy Body are doing something different than others. I’d say almost everyone tries to look their best in front of friends, family, and in public. I applaud my wife’s ability to rise above her symptoms for however long she can. In fact, I treasure those moments because they help me maintain the bridge between the Pat I married and the Pat of today (Both of whom I love dearly).

            I think the term “showtime” developed because this temporarily improved behavior creates a problem for caregivers. If friends and family (and doctors) only see someone with Lewy Body at their best they may very well underestimate what the person with Lewy Body and caregiver are experiencing. For example, one of my friends in my caregiver support group continually heard from family members that she was exaggerating her father’s symptoms in order to gain sympathy. “Oh, yeah,” she replied, “Then you come over here for a few days and see what’s it’s really like.” Indeed, a couple of her siblings did exactly that. “Now I understand, and I apologize,” said one sister.

            Here’s the phrase I prefer to showtime: “peak performance.” I wish Pat many, many more peak performances.

 

“Showtime” from Pat’s perspective:

Showtime may refer to someone who has Lewy Body but is doing exceptionally well doing or explaining something that some people might expect and others might not. When I am doing this I am simply functioning as me. When I’m at my best that’s who I am. When I’m not at my best that’s who I am too. When I retreat from a discussion or pick up a book to read a page I’m taking myself out of being in showtime. I don’t have to do everything right. I’m taking a minute for myself.

 

 

Ch.9. Questions for the New Year: 2019 and then 2020

 Note: This essay was originally written in early 2019, then updated at the end of the year.

2019.

A new year has just arrived – 2019 to be exact. Pat’s been seriously ill for two weeks now.  Little oxygen in her lungs. Total fatigue. Pain everywhere. Stronger hallucinations sometimes, too tired even to hallucinate at other times. Twice I thought she should be hospitalized, but instead she’s on powerful antibiotics and home rest. Finally, she seems to be getting stronger.

            As we enter this new year, I have two related questions:

  • Will Pat’s medications continue to work as well as they have been? The doctor said they would work for “years.” If so, then that gives me more confidence regarding the second question, namely:
  • Will we be able to maintain our current lifestyle through another year? Long, quiet drives in the Wisconsin hills. Family time with our children and grandkids. Jigsaw puzzles. Monthly support group meetings in Eau Claire and St. Paul. Hallucinations only at night and in the morning. Both of us writing in this journal. Going to our book club together. These simple activities are precious – and very, very fragile.

It’s hard for me to be optimistic with Lewy Body. I keep hearing about the “inevitable” decline from some individuals in my caregiver group. The 5-7 year life span after diagnosis concerns me. But what gets lost in that kind of “down the road” gloom is what goes on daily. I admit that every day I breathe a little sigh of relief when things stay the same. And, once in a while, when Pat has an exceptionally good day, when she is thinking clearly, available emotionally and full of energy, I hope for a cure. Maybe someone will discover a medicine that will bring her all the way back. But, frankly, I’ll gladly accept another year (or ten) of what we have now.

All lives are fragile. Lewy Body makes you never forget that reality.

[For Pat’s comments on 2019 and 2020, see below.]

2020.

            It’s been one year since we wrote these thoughts. Here is an update. First, I’m relieved to state that Pat’s health has been good this year. She recovered fully from the illness I mentioned at the start of this chapter and has stayed well since then. I can also say that Pat is still functioning at a reasonably high level. Of the list above I made of things I hoped we’d continue to do we are still driving in the country, writing in the journal, spending good time with our family, and going to all our support groups. Only 1,000 piece jigsaw puzzles have become difficult. But that’s not stopping us -- we just purchased and enjoyed completing a 300-piece puzzle. Setting off that small loss, though, is the exciting fact that Pat has become a regular member of our local memory choir; I love hearing her sing again, something she hadn’t done for years (Pat has a beautiful soprano voice).

            However, we agree that there are some signs that could signal troubles in the future. Pat’s hallucinations are occasionally lasting longer in the morning than before and she has mentioned that sometimes she feels confused, as if the world just doesn’t make sense. All in all, though, I feel grateful for a good 2019 and hopeful about 2020.

 

Pat’s comments on Questions for the New Year: 2019 and then 2020

            I disagree with Ron’s thinking here. His comments so far are ok. But some of the time I don’t see his understanding being so complete. I do agree that all our lives may be fragile, but a partner who sees and accepts what a person can do for themselves, is valuable to me, and often cherished. What I’d prefer is for Ron to focus more on what we have and less on what bad things might happen. I’m not going anywhere.

 

Ch.10. Physical Intimacy: Hugs and More.

            My friends and family have been a wonderful support for me during these Lewy Body days. Recently I was talking with a family member when I mentioned that Pat and I had made love that morning. That person was a little surprised that we could still have physical intimacy at this stage in our lives.

            Fortunately, Lewy Body hasn’t inhibited our ability to find comfort in each other’s arms. Most of the time this means gentle caresses and warm hugs – reassurances that we are here for each other and always will be. Our love is permanently stored in our muscles, nerves, and brains. Caring touch warms, assures, rewards, and connects the two of us in ways that no amount of talking could ever match.

            Sexuality is also important, of course. Oddly, I think it’s become easier to communicate our desires during the Lewy Body years. Less guessing (“Is she interested? Am I interested?”). More straightforward signs of interest. Fewer complicated sequences of “maybe…yes…no…maybe…” Of course, it helps that we are both retired. There’s less competition for our attention from other activities, fewer phone calls, less stress, and no frustrating times at work when you’d like to be having fun in the bedroom.

            I’ve read in the Lewy Body literature that sexuality can be impaired in many ways because of Lewy Body, especially if people also have many Parkinson’s symptoms. So that’s another thing to be prepared for in an uncertain future – and to be grateful for living in the here and now.

            In writing this passage I’ve just had a realization: I never think about Lewy Body while we are making love.

 

Pat’s comments on physical intimacy:

     I just love being close…holding hands, hugging, lying in his arms or the full shot of love-making.  I have few restraints when we are together and feeling good about that. It’s been quite a surprise that others think that is odd. Lying close to Ron or near to him is extremely important to me. I feel very much in touch with him at these times. I love him and I don’t see any reason not to.

 

 

Ch.11. What Comes Next? The Lewy Body Sequencing Problem.

            When I was young, I had difficulty learning how to tie shoelaces. Years later someone told me it takes 32 separate physical actions to tie those laces. No wonder it took so long to learn. In retrospect I can’t imagine how any kid could master such a long sequence.

            Think of all the sequences we face in the course of a day. How many actions must be accomplished in exactly the correct order in order to take a shower? Brush your teeth? Toast and butter your bread? Identify and then use the remote that controls the television vs. the speaker system vs. the blue ray machine? Start your car and put it into drive. Adjust the windshield wipers? Play catch with the dog? Make lasagna for dinner? Sort and put away the laundry? Use an axe to chop wood? Pay your bills and balance the checkbook? Take a walk and find your way home? Write up a summary report on a meeting that ended an hour before? Write this sequence on sequencing?

             Everything mentioned above and much, much more requires a specific ability called sequencing. Human brains seem to have an innate ability to create sequences, sometimes of amazing complexity. Yesterday, for instance, I watched and listened to a concert pianist play an entire symphony from memory. Who knows how many thousands of notes this man played in their exact order?

            It’s difficult to learn new sequences. But once a sequence has been practiced and repeated frequently it is relegated to areas of the brain that require less conscious awareness. There it is labelled “automatic” knowledge (or, more simply, a habit). That allows our conscious brain to attend to newer concerns, including learning even more behavioral sequences.

            Lewy Body plays havoc with sequencing. First, it makes new learning far more difficult.  Pat, for example, had difficulty learning how to turn on and aim a new camera she received as a gift. But most older men and women struggle learning new things such as how to utilize the Internet.  Learning new sequences becomes harder for everybody as we age so we could argue that Lewy Body simply accelerates an ongoing trend. That’s not what bothers me the most about Lewy Body dementia.

            The real problem is that Lewy Body attacks the older, supposedly automatic sequences that undergird our life routines. It’s as if Lewy Body were a pair of scissors snipping away at all the neuronal connections in the brain, separating long chains of information into unusable bits and pieces. But, just to add a new layer of confusion to our lives, there is also the issue of fluctuation. Here’s an example: sometimes Pat can make us a lunch of grilled cheese sandwiches and canned fruit. She completes the entire sequence (including cutting the cheese, plugging in the grill, placing the cheese on the bread, placing the sandwiches in the grill, closing the grill… -- as you can see, even a simple meal is far from simple). At other times she is stymied, most often at the very beginning (“I can’t remember how to do this”) or less frequently somewhere in the sequence. That, of course, leads to confusion, frustration, and sometimes to poor decisions.     I think sometimes people regard individuals with Lewy Body dementia as being “impulsive” in their actions when I suspect that they have simply lost track of the correct sequence in a behavioral chain, begin to panic, and try the first solution that comes to mind. It’s important to realize at these times they are problem solving in difficult circumstances. These situations call for love and acceptance, not dismay and shaming.

            Sometimes writing down the correct sequence of behaviors helps. Not always, though. For instance, I tried writing out the exact maneuvers to reach our television’s stored programs. But that meant Pat now had to add yet more steps to the sequence, namely finding and reading the instructions. She eventually learned the sequence on her own. She usually remembers it too, so long as she uses it regularly and isn’t too stressed.

            As a caregiver I try to remember that Pat may have trouble with patterns and sequences she “should” know by heart. That’s Lewy Body taking the scissors to her memories and sometimes gluing them back together.

           

Pat’s comments on sequencing:

          If I cannot remember an activity in its usual sequence, I may find a better sequence. Why not?

            What happens when I can’t remember a sequence? I yell “Ron, come help me” or I yell “Ron” in my mind if he’s not here. Sometimes I remember what he would have said or I say “Now, Pat, how would Ron do this?” Or I ask someone else.

 

Ch.12. We Are Still a Team.       

            I’m writing this passage on the coldest day in decades here in rural Western Wisconsin: minus 34 degrees Fahrenheit actual, minus 60 windchill are predicted tonight and the highest temperature today was minus 16 Fahrenheit. And we have one big, cold quarter horse who hates staying in his garage stall no matter what the temperature. Our job was to find a way to keep him there despite a broken door that wouldn’t shut tight. Pat talked with Lakota and fed him while I pounded fence staples into the wall and attached ropes to them to secure the door and hold our reluctant beast inside. When I got stuck on the geometry of it Pat suggested the best way to arrange the ropes.

            That’s about when a second crisis developed. I had opened all the faucets in our home just enough for water to trickle out – to keep our water pipes from freezing. Unfortunately, I neglected to make sure the drains were open. I discovered that even a trickle eventually creates a flood when a couple hours later I checked on the downstairs sink. Once again Pat and I considered ideas, and she made the winning suggestion: tear out the (old) rug and liner to prevent floor damage and mold. I supplied most, but not all the labor, partly because Pat is struggling with episodes of dizziness this week.

            I wonder how many times over the last 53 years we’ve teamed up this way to solve problems like how to handle the kids’ fights, what to say to a difficult client, how to save for retirement, and what to make for supper.

            I feel like shouting to Lewy Body that We are still a team. Do not underestimate us. I’m not just Pat’s caregiver and she’s not just my care receiver. We are partners. We do things together. We solve problems together. We are a team. In fact, we are still a good team.

 

Added Note: Jan. 8, 2020. Sometimes being a team means we share an emotional experience as well as a task. Two days ago, that meant saying goodbye to our Chow Chow Franklin, whom we had to euthanize after he collapsed because of lung cancer. Franklin lived 11 ½ years, 11 of them on three legs after an automobile accident. He was loved and loving. Pat held me as I cried. I held her. During this time Lewy Body faded into the background. We were just two mourners holding each other up.   

            That same evening, I discovered I had completely bungled a professional trip, buying airplane tickets to Santa Barbara, CA when the actual talk I was to give will be in Pomona, about 3 hours away. I felt horrible and began calling myself names. Pat intervened to help me calm down as she will mention below.

 

Pat’s comments on being a team: Ron is right. We are a team, and we always manage to find a good way to do that.

Added Note: Jan.8, 2020. Ron was very sad and angry with himself and he continued to talk about how he was screwing up and not doing what he wanted to do and I did the best I could to tell him I see him as being a very good person. When he chews himself out I feel he’s lost himself and I remind him of the good things he does daily and weekly for all of us and I say things to help him calm down. It is important I do that rather than cry myself. I refuse to get agitated and I stay calm even if I don’t feel calm inside and I remind Ron of how wonderful he is and I love him. I tell him when he is evaluating himself that way that he is wrong. I want him to care for himself and respect himself too.

           

 

Ch. 13. Mortality.  

            Pat and I attend in St. Paul a Lewy Body group for people with Lewy Body and their caregivers. Today a new member asked the inevitable question: “How long do people with Lewy Body Dementia live?” Nobody answered. In fact, nobody moved or said anything for several seconds. Finally, Paula, our facilitator, answered: “Researchers say 5-7 years after diagnosis is most common, but some people live longer. They usually die from sicknesses partly due to the effects from Lewy Body rather than from Lewy Body itself.” The woman who asked the question had been diagnosed three years ago, Pat about one year ago, others in the group up to five years or more.

            There we sat with five people facing their mortality, looking sad, or scared, or stoic. And there we sat with five caregivers looking sad, or scared, or stoic. Waiting for someone to shift the topic. But Pat, courageously, spoke up: “I don’t want to die now or in five years or ever,” she said. And I don’t want her to die, either.

            My wife has a fatal disease. We don’t talk about it a lot. But recently she became ill with an infection. I guess that spurred thoughts on mortality. She surprised me by giving me permission to find another woman after she dies. I was surprised mostly because Pat is quite scared of dying and usually completely avoids that topic. But perhaps she doesn’t realize that I cannot think that far ahead. I cannot contemplate life without her. And think about it: right now, we spend probably 95% of our time with each other, sometimes in separate rooms but usually in the same house, car, motel, meeting, friends’ home, or restaurant. Lewy Body brings partners and families together both by necessity and by love.

            So, as it stands now Pat may die before me, perhaps in 4-6 years (since she was diagnosed about a year ago), by which time we’ll be about 80 years old. That’s 1,400 – 2,100 days from today. Possibly, though, with a little luck, we can squeeze in another couple thousand days. One of our goals must be to make fruitful and joyful as many of those days as we can. How well we do this depends a lot on how slowly Lewy Body progresses but also on how determined we are to celebrate our love during the time left.

            I hope we can continue to discuss mortality as a couple and in our support group. I know I need encouragement to deal directly with this daunting reality.

Pat’s comments on mortality:   

[Pat to Ron]: “I don’t want to die now or in five years or ever.”

         Mortality is the only damned thing that scares me. I don’t want to go away. I still have things to do.

Ch.14. Waking Dreams, RBD, and Sleep Deprivation.

            Recently I awoke around 1 a.m. feeling chilly. Oddly, the blankets had disappeared. I heard noises from Pat’s side of the bed and asked if she were OK. “No,” she answered, “I’m trying to keep the boat from sinking.” She had thrown the blankets out of the boat to keep us afloat. With Pat’s agreement I turned on the lights. She looked terrified, which was understandable given she had been fighting for our lives in her dream. Within a few minutes, though, her fears began to ebb as she realized we were in a bed and not a boat. Still, it took about 30 minutes before we both felt safe enough to turn the lights off.

            REM Behavior Disorder (RBD) is the official title for this type of event. Our St. Paul group facilitator, Paula Biever, calls them waking dreams. I prefer this term because it describes Pat’s actions so accurately. 

            This was the first time Pat had to keep a boat afloat. But I’d guess she has vivid waking dreams every 2-3 days. Most frequently they occur in early morning, probably during the last REM stage before waking. At that time of day, I find it difficult to distinguish them from her more typical hallucinations. Maybe the difference is that when she hallucinates, she sees people who aren’t there; when she has a waking dream, she interacts with them.

            Our brains are supposed to shut off the possibility of movement when we sleep so we aren’t active during the period when we dream the most, labelled REM (for rapid eye movement) sleep. Unfortunately, this process sometimes fails for people with Lewy Body brains. Movement isn’t completely disempowered during sleep. And, problematically, occasionally muscles remain active. When that happens people with Lewy Body “act out” their dreams.          

Waking dreams interfere with sleep. First, they disrupt the normal flow of restorative energy that normal sleep provides. Secondly, they create emotional crises that make it difficult for Pat to get back to sleep. Consequently, I think Pat suffers the effects of long-term sleep deprivation, especially fatigue and low energy. Meanwhile, between the 2-3 times a night my prostate tells my bladder to get up to pee, other occasions when I simply wake up in the middle of the night and can’t get back to sleep, and Pat’s not infrequent waking dream episodes I’m also struggling more than ever before with tiredness, sometimes bordering on exhaustion.

            More generally, sleep has become a problem for both of us. Pat sleeps for long hours but very lightly. I seldom hear the natural deeper breathing sounds of good sleep. And often she tells me she’s been resting but not actually sleeping.

There are both informal and formal sleep medications, of course. So far, though, I think we’re better without them. For one thing, I want to be able to wake up fully functioning rather than groggily from medications. And Pat needs to have a sense of safety. This applies to both of us, by the way. It’s hard to go back to sleep thinking about what bad thing might happen next.  Pat must also be careful not to take anything that might interfere with her thinking. But I do plan to ask Pat’s doctor about medication to lessen her waking dreams at our next appointment.

Here's the bottom line: It’s hard to go back to sleep thinking about what might happen next.

 

Pat’s comments on Waking Dreams, RBD, and Sleep Deprivation.

Waking dreams are just kinda a mess. Go back to sleep is the best solution….It works as well as anything else.

These dreams occur most often when I am very tired, confused and don’t know what to do. Then suddenly I take it in and I feel lost, that something awful is happening, and whatever It is, it’s my fault and I have to fix it. Unfortunately, sometimes I must wake Ron up to see that he’s ok. He reassures me he is, and that I’m ok too. I do my best to calm down. Sometimes I can do so right away; other times it takes a longer while.

He is very nurturing in these situations. I have learned to listen to him and trust him and have the confidence to discuss the worst waking dream here. Ron has been helpful—even beautiful –about reassuring me and being willing to hold me.

Added note: January 2020. Pat.

            Recently my middle daughter Jennifer gave me a weighted blanket for Christmas, and I’ve found it much warmer than a normal blanket and I’m thinking of getting a heavier one. Usually the one blanket does fine for me, along with a quilt that my Auntie Anna made for me when I was a child but occasionally even this weighted blanket doesn’t hold me down so I’m thinking of getting a heavier one. The weighted blanket makes me feel very safe. I know I’m inside it and nobody else is. My daughter has a heavier one and loves it but I haven’t tried it yet. Right now I’m pretty happy with what I have.

 

 

Ch.15. Slightly Unusual Behaviors (SUBs).

            Pat has never been a model of conventionality. In fact, she’s sometimes     decidedly unconventional. For example, for years she’s picked up rocks almost every time we go out to dinner, taking one or two from parking lots and garden areas. The rocks aren’t special. They’re neither large nor particularly compelling or beautiful – just rocks. We have a good portion of our garage full of these rocks,

keeping each other company. Let me add that we also own an extensive collection of minerals such as turquoise and a collection of seashells that Pat and I have gathered, on her initiative, over the last thirty years. Pat’s been a rock lover all her life, having grown up on a cliff overlooking the agate filled St. Croix River.  

            Lewy Body has added to Pat’s unconventionality. Now she does unpredictable things that are just a little “off.” One example: the other day she ordered both raspberry lemonade and a non-alcoholic beer with dinner.

      Another example is that sometimes at breakfast with our friends, Pat seems to become bored with the conversation and she simply drifts away, even on occasion reading a book or newspaper at the table.

            I call these actions “subs,” which stands for “slightly unusual behaviors.” They have made me recognize how much normal social life is full of norms, guidelines and rules. It’s as if Pat were saying that she doesn’t have time anymore to bother with silly rules and conventions that just limit people’s freedom of expression.  And when I do “hint” that what she is doing is a little odd, as I did when she ordered those two drinks, she often shrugs me off. So, what the Hell.

            I do have one question, though. How much is Pat aware that she is breaking these relatively minor societal conventions. Does she know and not care? Or does she not realize what is happening? If the former, I should stay out of her way. If the latter, perhaps I should at least call it to her attention?  Probably sometimes she knows and other times not. How can I tell?

 

Pat’s comments on SUB’s.

            I am aware that I am following what I have been taught to do in my family. If something feels more correct or more OK than a conventional response, then do it. Do what feels right to you, not what everyone else wants you to do.

 My response is that it depends on what is going on with the groups and with me.  For example, after trying the O’Douls beer, I did not like it very much, so I switched to asking for a pink lemonade which was much better. I did not ask for a substitution. I had ordered an O’Douls but did not like it though I HAD ALREADY BEGUN TO DRINK IT.

            At the movies I bought two boxes of different kinds of candy before the show. As I’ve grown I know if I want more than one kind of candy that’s ok. There isn’t anybody telling me I can only have one.

 

Added note January 2020. Ron.

            A year has passed since I wrote my previous comments. During this time, I’ve learned mostly to ignore these small details. Compared with bigger concerns such as hallucinations and the danger from falling I don’t need to worry about these minor differences. I still notice them, but they simply don’t cause me to feel as embarrassed. And if I do choose to feel embarrassed that is my problem, not Pat’s.

 

 

 

 

 

 Ch.16. Depression and Lewy Body.

            It’s February 2019 in Wisconsin as I write this piece. There’s at least a foot of snow on the ground everywhere you look. It’s about 10 degrees above zero Fahrenheit, which is an improvement from -30 degrees last week. This is prime time for Seasonal Affective Disorder (S.A.D.), a depression that either only shows up in winter or, as in Pat’s case, adds to an already present depressive state. Pat’s been treated for depressive symptoms for many years, well before she was diagnosed with Lewy Body.

It’s natural to wonder how depression relates to Lewy Body. Does one predict the other? Does depression cause Lewy Body? Does depression increase Lewy Body symptoms? I did find one research study (published in the American Journal of Geriatric Psychiatry) that suggested a history of depression is a risk factor for the development of Lewy Body. The authors suggested two possibilities: either the depression is simply a noncausal early predictor of Lewy Body or depression itself might somehow be a causative agent in the development of Lewy Body. In other words, if you suffer from depression, you may be at higher risk to develop Lewy Body later in life but the connection between the two is unclear.

                Let me note that anti-depressant medications are not prescribed to treat Lewy Body. Nor are antidepressants prohibited for people with Lewy Body, as they apparently do not cause ill effects.

            Some Lewy Body symptoms also occur in major depressive disorders, including hallucinations, memory problems, lack of energy, sleep problems, and inability to begin or complete tasks.

            Let me return to our immediate situation. My observation is that Pat’s behaviors, emotions and thoughts have become more negative this winter. First, she is initiating and completing fewer activities than she did last autumn. Secondly, she expresses more negative emotions such as irritability, guilt, and fear, especially in the morning (perhaps partly because of her sleep difficulties). Thirdly, I believe her thinking includes more frequent episodes of doubt, suspiciousness, hopelessness, and despair. The diagnosis of Seasonal Affective Disorder explains these symptoms but so does Lewy Body. I would be surprised if even our neurologist could distinguish one from the other at this point.

            I’m rooting for S.A.D. Why? Because spring is coming soon. Pat usually perks up with more sunshine and warmth. If these troublesome behaviors, emotions and thoughts are caused by S.A.D., then they will soon begin lifting and I’ll have a happier wife beside me. My fear is that these “winter” symptoms will last through the summer, either because they are indicators of worsening LB or because although they were caused by S.A.D. they won’t resolve as usual.

            A care partner’s note:  I do believe that depression is also a major risk factor for caregivers. We should be careful to eat well, exercise moderately, sleep as well as possible (I’ve talked with several caregivers who’ve had to move to separate beds from their partners to sleep better), and stay connected with positive friends and family members.

             I’m by no means immune to depression myself. However, over the years I’ve learned that I don’t have to become depressed just because my wife is depressed. I try to stay positive without insisting that Pat cheer up. I’m certain it will not be helpful to Pat if I were to match her sad feelings with mine. Sometimes it’s better not to have too much empathy.

 

Pat’s comments on depression:

            I don’t know whether depression and Lewy Body are the same yet. What I wonder is when I think about the years of my life I’m likely to lose if that isn’t a reason for depression? I don’t know how many years I’ll lose. I’m not convinced I’ll lose any. Still on the whole I don’t feel as depressed as I used to so perhaps these are different things. I know the prediction is that people with Lewy Body will lose years of their lives but I haven’t identified myself doing that yet.

When I’m going through a lot of hallucinations, that gives me more of a feeling of depression, but that doesn’t always happen every time I hallucinate. I actually don’t think I’ve hallucinated a whole lot recently.

 One of my biggest frustrations is having all of my family stuff (pictures) around and not being able to put them in places that make sense. I get into an end of the road thing – I don’t know what to do or when and that is depressing. I’ve got a lot of pictures to sort and I’m not sure how to start them.

 

Added Note: January 2020. Pat.

            I’m not feeling so depressed this winter. We have many friends and each has their way of looking at life but on the whole they’re doing better this year than last.

           

 

Ch. 17: Not Driving – A Blow to Pat’s Sense of Self.

            Do you remember how proud you were when you passed your driver’s test, maybe at age 16, 17, 18?  “Now I am an adult” is how I felt at the time. In America being able to drive is associated with freedom, autonomy, maturity, and taking charge of your destiny. Pat began driving at age 15    and drove continuously until last year.  She drove well and virtually accident free all that time. But then came her Lewy Body diagnosis. And just like that Pat’s 57-year driving career braked to an abrupt halt. She has not taken this change gracefully. At various times she suggests that she would like to drive. When I tell her “no” (which makes me feel awful, by the way) she sometimes becomes angry, or sad, or argumentative. I believe Pat feels diminished. She probably feels like she’s being treated like a child. I think I understand. I think I’d feel the same way. But understanding the hurt doesn’t stop every episode from being painful for both of us.

            The last time this happened we agreed to discuss the matter with her neurologist, Dr. Donn Dexter. Today he looked at the results of Pat’s neuropsychology testing a colleague had performed and pointed out that she had done quite poorly on exactly the tests that predicted driving performance. He was very respectful, never lecturing or pronouncing judgement. But it was clear from Dr. Dexter’s remarks that he much preferred Pat continue refraining from driving. Pat seemed to accept his remarks --- but I suspect we’ll return to this theme in the future, maybe several times.

            Driving concerns are one of the most frequent topics I’ve heard at my caregiver’s support group. People talk about how their Lewy Body person “snuck out and drove around the parking lot” and “It got to the point we had to hide the keys” and “I worry he’ll kill himself or others because he insists that he can still drive fine” and “I dread talking with people who bring up driving places without realizing how that affects my wife.” Stories get told with a kind of war story humor that serves to mask the underlying worry and anxiety. Caregivers joke about a non-joking matter because what else can we do?

            Pat and I have tried to lessen the damage as best we can. For instance, she used to love just driving around and getting “lost” to the extent of driving on unfamiliar roads with no destination in mind. It’s not my natural style but by now I’ve driven us around just about every country road within a twenty-mile radius of home; in the process I’ve learned that it really can be fun to drive around just to drive around, appreciating the world’s beauty and variety. I’m also fortunate to be mostly retired so I can promise Pat I’ll willingly drive her wherever she wants to go. But, of course, there’s always that one catch: “I’m driving and you’re my passenger.”

 

Pat’s comments on Not Driving – A Blow to Pat’s Spirit.

            My comments on not driving would begin more angrily. Having driven since age 15 without any problems I feel that the assumption that I won’t drive responsibly is incorrect and I resent people making that judgement about me. I would often like to drive to a quiet place and look at the plants and do any small things I can do to help heal a plant, for example, but other people don’t seem to understand these things and think them silly. Another problem is that the people I’m with when we are driving places don’t understand those things and therefore not driving by myself leaves me in a place where almost everywhere I go I feel judgement.

When I was in the West I was marvelous at finding bone stashes everywhere. Two were up in the hollows of trees. They are a sacred mark of those animals’ existence and I appreciate seeing them and then letting them be. But I can’t drive to those places anymore so I feel stuck in a way – I feel there is a part of me I can’t go out and find and explore.  It doesn’t seem reasonable that in all this world because I cannot drive I cannot explore some sacred places. This is really a painful thing. However, it is my circumstance and I’ve not gone beyond what I’ve been asked/told to do.

            There are many things I can do with Ron or with others. For example, especially with small children present. Smaller children are great at exploring the meaning in the little pieces of nature we find. I don’t think I have anything more to say about this right now.

 

Added Note: January 2020. Pat. I can still imagine those sacred spaces in my mind. Just because I haven’t seen them doesn’t mean I haven’t seen them.

           

           

 

Ch.18. I’m Scared to Travel Away from Pat.

            Pat and I have spent the great majority of time together since we both retired and Pat was diagnosed with Lewy Body. That’s good. But I’ve now realized that I am afraid to leave her.

            Here’s what happened. About a week ago I received a call asking me to develop a state-wide anger management program for counselors at a large state’s prisons. I would be the trainer. This would be a great opportunity to teach prison workers how to help prisoners prevent, contain and resolve their anger – and maybe help someone out there stay alive by doing so.

            But… I would have to travel to the training site, do the training, and fly back home. That would take three to four days. Nothing I haven’t done probably 50 times before. But… all those trips preceded Pat’s diagnosis. I never had to worry before about whether Pat could safely cook a meal or walk the dogs without falling or handle the remote to watch her favorite shows.

            Furthermore, I’ve been proud that I haven’t needed much help from my children, friends or neighbors. Too proud, I now realize. I should have accepted a few of their offers to stay with Pat. I guess I saw accepting help as a sign of weakness. But the result is that I’m psychologically unprepared to travel. My fear threatens to join us at the hip, something Pat certainly doesn’t want or need.

            I brought my situation to our couple’s support group in St. Paul. The other caregivers there understood my dilemma. They’ve all gone through the same thing. One man had to force himself to go deer hunting and could only stay away one day. A woman talked about trying to keep track of her husband to make sure he was ok. But they strongly encouraged me to accept this opportunity to take some time for myself. They reminded me that Pat has family, friends and neighbors in her support system and that we could also hire professional aides if need be. I heard them say these perfectly rational statements. My head agreed with them. Meanwhile, my gut was screaming “No, no, something bad will happen. Don’t go. She needs you to protect her.”

            I’ve made the decision to accept the training gig if it is offered. However, I expect this inner debate to rage on indefinitely. In the meantime, I will become a problem solver, contacting all the members of Pat’s support team to ask them to discuss with Pat what kind of support she wants and needs. I almost said I will make all these arrangements, but I think I better trust them to do it themselves. Probably what I need to do is arrange for my support network so I can leave Pat for a few days without suffering a panic attack.

 

Pat’s comments on I’m Scared to Travel Away from Pat.

            I will feel fine with Ron’s travelling away if I can reach him by phone at times so we can talk. I don’t want to call him in order to make sure he doesn’t go away and I do want to know when he plans to come home. We need to make a list of the things I must take care of while he’s away so I have a list I can follow and so I don’t miss things that are important to get done. If I know what I am supposed to do and if I know I can find back up in case of problems with insulin or other difficulties I will be fine.

            I’m not afraid of being here on my own. This is my home environment. I can always ask for help and I know people will call to offer help.

            Josh and Jenny both have offered for me to stay with them. I can do that but the dogs needs are important too. I don’t have a solution yet. And I don’t drive so I can’t take the dogs. And cat. And horse. I can ask if I can bring the animals with me but I don’t know the answer yet. Those are answers I still have to find.

            If Ron gets all scared and calls me up because he’s worried about me I will tell him whether he needs to be worried at that time or not.

           

 

Ch.19: Acceptance: Yes; Passivity: No

            Pat and I recently attended the Meeting of the Minds dementia conference in St. Paul, MN. There were about 1,000 people there, including those with various kinds of dementia, caregivers, and professionals. The theme of the conference was basically “Yes, we have dementia, but our lives are far from over.” People talked about what they’ve had to give up because of their disease (e.g., driving), what they’ve been able to retain to some degree (e.g., canoeing with a friend rather than soloing) and what new activities and relationships they’ve developed since their diagnoses (e.g., joining a singing group ironically entitled “The Unforgettables”).  

            One of the presentations was specific to Lewy Body. It was facilitated in part by Dr. Bradley Boeve, the Lewy Body research professor at the University of Minnesota. He emphasized that you should not just be passive regarding the symptoms of the disease. For instance, he stated that REM sleep problems could and should be approached carefully but aggressively. That rang a bell with us because Pat has been having more difficulties in that area. She’s been sleeping lightly, awakening often, and arising in the morning hallucinating children and adults walking around our home. Her sleep problems were exacerbated by my own tendency to wake up several times during the night and sometimes not be able to get back to sleep. Our combined result was daytime fatigue and too much napping. But with Dr. Boeve’s advice in mind, we’ve mutually now begun a trial of Melatonin, the first step in REM problems treatment. Initial results are promising. We’re sleeping better and Pat isn’t confused when awakening.

            Pat started wearing her “I am Lewy Body” bracelet (available from the Lewy Body Association) after the conference. My understanding is that she felt ready, after hearing others tell their stories, to more fully accept her condition. Acceptance is an active state of mind, as against passivity. For example, when alcoholics accept being “powerless” over their addiction, it doesn’t mean they just give up the fight. Instead, they recognize their reality and take the steps they need to live a sober lifestyle, such as attending A.A. meetings. Accepting Lewy Body indicates that someone is ready to spend less time denying and minimizing his or her condition and to spend more time taking active steps such as exercise, singing with a group, reading, solving jig saw puzzles, and anything else that will help slow down cognitive deterioration.

            Acceptance and Passivity can be placed upon two continua:

Acceptance …………………………………………………………………………. Denial;

Active………………………………………………………………………………….. Passive.

It is important not to confuse these two distinct entities. Obviously, the best place to be is in the “acceptance/active” quadrant. Personally, I tend toward the “acceptance/passive” area, meaning I am a little too likely to say to myself “That’s just the way things are and there’s nothing we can do about it.” So, if I want to be Pat’s best caregiver, I must recognize and challenge that tendency. I need to remind myself to challenge reality rather than passively “accept” Lewy Body.

 

Pat’s Comments on Acceptance: Yes; Passivity: No.

            This is a complicated subject for me. I want to be accepting of who I am including of my Lewy Body. As I am more accepting of who I am in all of the ways that I am I think my brain functions better. I don’t remember everything better but there are big words like I haven’t used in years that I find myself using frequently and with ease. That feels good; that feels like acceptance. One of the words was “interlocuter.” I had a very large vocabulary as a senior in high school and beyond that time. I feel good when I use words or recognize longer words like this that have a larger meaning.

            It helped me to wear the Lewy Body wrist band during the Meeting of the Minds and I’ve worn it for a few days afterwards. I know I have Lewy Body and I do accept that.

            Active and passive is a more difficult concept for me because depending on the day and on my internal weather some days I am passive and I want to sleep much more than others. I enjoy those days although I enjoy the days I’m up and active as well. I think my focus is more on accepting who I am now whoever that is and I don’t see the times I am sleeping and resting more as times of denial. I don’t think I deny my Lewy Body anymore and I am glad about that.

 

Ch.20. Sudden Mood Changes.

            When Pat was first diagnosed with Lewy Body, I asked several people this question: What is the hallmark of Lewy Body? What makes it stand out from Alzheimer’s Disease, Parkinson’s Disease, etc.? The answer was almost invariably the same: unpredictable and rapid mood changes. What they could have added is “…and you, Mr. Care Partner,” better find a good way to deal with them.

            Today was typical. Pat woke up sad because she had “lost my baby” when she awakened. Then she morphed into what I call “snapping turtle” mode. We had a breakfast meeting with another couple, and it was my unenviable responsibility to “remind” her to get going. “Honey, I just want to tell you that it’s 8:45 and we need to…” was interrupted by a “YES, I KNOW!” As in “I KNOW AND LEAVE ME ALONE!” She stayed grumpy another hour, until breakfast.

            During the rest of the day, though, Pat was quiet and somber during breakfast; happy and positive when we hugged; humorous and playful as we took a drive through the country; curious and interested as we viewed a documentary, suddenly grumpy again because she was hungry, and then happy during the evening.

            Everybody has occasional mood changes, of course. But Pat’s mood often changes abruptly, sometimes catching me off guard. I may think we’re fine only for her to snap at me for some reason I cannot decipher. It’s equally likely I’ll go into defensive mode to deal with her anger only to find her smiling and unconcerned. Sometimes I feel like I’m on the caboose of Pat’s emotional train, always running a little behind the action.

            These sudden, relatively unpredictable mood changes can be hard on me. When I get in a bad mood I tend to stay in that bad mood for a long time. Then I slowly ease my way back to neutrality and then gradually onward toward happiness. If Pat shifts unexpectedly into negative territory, I may go with her only to find myself there all alone as she rapidly bounces back.

            I have learned over the last year to be patient with this process. The phrase “This too shall pass” helps with the sudden negative moods; the phrase “Enjoy this while it lasts” reminds me to fully appreciate the good moods. It is also beneficial to remind myself that Pat has the right to her emotions, whatever they may be and whenever they appear. Meanwhile, I have the responsibility to handle my own emotions. Since I know I tend to stay in bad moods far longer than Pat I must not over-react to her mood changes.

 

Pat’s Comments on Sudden Mood Changes.

            I have sudden mood changes, but I may hide them. I think I’ve always had times when I felt more sensitive and when I felt easily upset by things Ron says. On the whole I do my best to address my mood changes before I address them out loud to Ron. That does not mean I always manage to do this. It is important to me to remember how much I love Ron and how much he means to me. Often that feeling is more important than an immediate mood change. I do have quick mood changes but in general they don’t last a very long time.

 

 

 

 

 

 

 

Ch.21. Adding Structure Challenges Lack of Initiative Caused by Lewy Body.

            Q: “Hon, what would you like to do today?”

            A: “I don’t know.”

            Q: “Pat, are you excited about going to the symphony tomorrow?”

            A: “Yeah, I guess.”

            My wife used to be a very energetic individual, full of interests and enthusiasms. Then, in middle age, she suffered bouts of depression that slowed but didn’t stop her. She counseled, took pictures, told long stories that led us through vivid details before reaching their conclusion, drove around getting lost on purpose, etc., all with plenty of good energy.

            Lewy Body has presented a new set of issues in this arena, though. One standard feature of Lewy Body is loss of initiative. Pat simply doesn’t suggest we do things as much as she used to. Nor does she initially respond to ideas about what we could do with as much enthusiasm. Let me add that this loss of initiative is a standard feature of Lewy Body, not related to the psychological diagnosis of depression.

             

            So, then, what helps persons with Lewy Body stay more energetic? There are medications and you could talk with your doctor about them (I’m not qualified to discuss them here). Other than that, I think each Lewy Body person and caregiver must be creative. I need to ask questions like these:

What still interests Pat the most?

What new activities could replace old ones that Pat can’t do or won’t do any longer?

What kind of challenges, mental or physical, does Pat best respond to?

What social activities, and with whom, are still of interest?

            However, Pat and I discovered just answering these questions wasn’t enough to get us going. We needed to add some definite structure to our lives.

             Structure is needed because in addition to loss of initiative with Lewy Body comes loss of spontaneity. We’ve made up for that by adding structure. We’ve done that with a weekly calendar upon which we’ve plotted several of our most enjoyable activities: country drives, journal writing, “nostalgia” (which means looking through the thousands of photos Pat’s taken of family, nature, and travels), drawing/painting, etc. Each day is different, and we list no more than two activities a day. It’s up to me, most of the time, to mention what’s on this day’s list. Pat tends to respond positively. Then we decide which activity comes first and approximately when we’ll begin it. And sometimes I’ll remind Pat of our plans in order to keep our interest and enthusiasm going.

 

 Pat’s comments on Adding Structure to Challenge Lack of Initiative Caused by Lewy Body.

            It’s harder for me to talk about things that I would like to do when I know that Ron probably won’t like them or I have the sense that he thinks what I like is silly. Today, however, we went for an outdoor drive that was different from the ones we’ve done before, because it was more lonesome territory, very full of nature, lots of in-betweens instead of being in town and there were different kinds of trees and foliage than usual. I love what we did today because I saw more kinds of things I’ve never seen before – a whole array of things and buildings and I saw so many things. We saw two turkeys individually running around. I noticed varying deer stands without being afraid of them – they were just part of the scenery so I was very enthusiastic about the trip and would like to do that again.

            I think adding structure has been very helpful. Our visits to the rock shop are helpful, to the St. Paul group is helpful, just going shopping together is helpful. I particularly like visiting the ZRS rock shop in Minneapolis because it is large and has a wide variety of minerals, both large and small, to look at. Also, Ron and I share this interest and that is a good thing. And one time when we were there, they carved a rock into a Christmas tree for me to give to one of my daughters. Going shopping would be really fun but often I feel that’s not favorable grounds for our interaction because Ron isn’t as interested in shopping as I am. On the other hand, just yesterday Ron took the dogs to the park in Mondovi but dropped me off at the Hope Gospel store and I spent a long time looking around and shopping and that was good. I was on my own! I was looking at anything I wanted to. Our activities relating to Curiosity Stream, drawing and painting, or sitting outside and reading are helpful too. Doing things together can be a lot of fun or very nice.

Ch.22. If You Don’t Laugh, You’ll Cry.

            Pat and I attended our Lewy Body group in St. Paul today. Part way through someone I’ll call Mel mentioned his frustration at frequently not being able to finish the sentences (and thoughts) he’d begun during a conversation. Mel chuckled as he remembered his embarrassment. He then accidentally gave an example of what happens; he was telling his story when his mind went blank. (From what I’ve observed, though, with Pat, it’s as if her mind goes numb, like it simply cannot work another second at the difficult task of talking). Then three more persons with Lewy Body described how they too sometimes failed to complete their sentences and thoughts, contributing their own vivid memories of these situations. Again, everybody laughed with (not at) the speakers, who always laughed as well.

            Today we also discussed memory failure, hallucinations and telling people about one’s diagnosis. All with humor.

            Finally, someone said what we were probably all feeling: “If we weren’t laughing (about these issues) we’d be crying.”

            Lewy Body Dementia is a terrible affliction. It eats away at a person’s ability to think, remember, communicate, and even to be self-aware, not to mention its devastating physical effects on the body. Lewy Body also attacks a person’s capacity for joy. And the same can be said of the family and friends of the Lewy Body person. They too can become more apathetic and joyless.

            Yes, Lewy Body can be disturbing, but only if you let it. Well, then, how can you deal with difficulties like not being able to finish your thoughts? One way is with humor. We humans have a great ability not to take ourselves too seriously. We let the universe play its cosmic jokes upon us and we laugh along.

            I don’t think we could see ourselves realistically if we couldn’t sometimes see the absurdity of our lives. Perhaps dealing with Lewy Body humorously lets us put our lives in perspective, balancing the pain of inevitable loss with the joy of just being alive today.

Pat’s comments on If You Don’t Laugh, You’ll Cry:

            One thought I have is that if I can just be where I am and look around and see what is here, it will please me. I don’t see the world in terms of being all good or bad; I don’t see my experience these days as being any less than before. Other people might see that, but I don’t. I want to say that just because a piece of life isn’t always amusing doesn’t mean it’s not worth anything.

 

Ch.23. Insecurity.

            I’ve always considered Pat to be a reasonably secure person. Sure, she has her quota of doubts about her appearance, competence, and general attractiveness, but no more (and usually less) than most women. Nor has she been particularly jealous of my time or friendships   . I’ve made friends with members of both genders through the years, as has she.

            Things change, however. Lewy Body has attacked my wife’s confidence in herself and, I believe, in her felt attractiveness to me. That’s understandable, given that some of her core strengths have diminished, such as creativity, problem solving, and communication skills. Pat sometimes has trouble liking her new self; no wonder she is uncertain if I still find her attractive.

            I discovered this problem indirectly. Gradually Pat began complaining that I spent too much time (though no longer than before) having coffee with a female friend. She questioned why I would take the dogs on their daily drive without asking her to join us, although this was a habit I’d developed and maintained for years. Pat worried that people in my care partners group would try to convince me to put her in a nursing home and that I would want to do just that. Even late-night television was questioned: why are you watching tv when we could spend time together cuddling in bed? Watching sports became an enemy competing with her for my attention. It turns out the NCAA college basketball tournament’s nickname, March Madness, exactly fit our relationship dynamics. That’s when our mutual discomfort peaked.

            Did I handle Pat’s insecurity graciously? No. I found myself feeling confused, anxious, irritated, and sometimes pissed off. Why did I have to defend myself when in my humble opinion I was doing nothing wrong? Here I was supporting my wife night and day only to receive her ridiculous questions and complaints, I thought. This created the perfect condition for a devastating feedback spiral: the more Pat demanded my company the more I resented her asking and so I stayed away longer, which of course only led to more complaints and demands. We did try to talk things through but somehow the pattern persisted and even got worse.

            Then one night, Pat simply changed. Instead of complaining she hoped I’d be watching a good game tonight. No sighs, no grumblings, just a positive remark. I guess she’d done some thinking. I hope she felt convinced that I still love her and find her beautiful. Since then, she’s been far more positive about my friends, the support group, even sports. Meanwhile, I’ve tried to recognize better when Pat needs contact. I know I would need extra rounds of reassurance if I had Lewy Body. It’s only fair and right to let her know frequently that she can count on me to be at her side, now and forever.

Pat’s comments on Insecurity:  

     I do have some remarks on insecurity and jealousy. Whenever Ron cancels an activity with me, I become worried. Usually I would like to know how eager he is to go with someone else in order to make my own decision about whether or not to go with him or with them.

If Ron wants to go with someone else and I say yes that’s fine but afterwards if he wants to do something else with that other person that doesn’t include me I feel uncomfortable. That means I have been ditched. So, if Ron wanted to have coffee with just [a female friend] but had taken me along only to then want to leave me behind I would not feel good about it. Another example would be if Ron’s going to watch a tv show or game with somebody and it’s only an hour that would be fine but then I would want him to come home. That’s how I’m feeling right now anyway because I’m a little nervous right now. If I were more relaxed it would depend on the person, where he was going, and when he’d get home. If he came home just to go to bed I would be happy.

My way of thinking about this is that if Ron went with someone and then returned, I would want him to stay returned. I would not be happy if he went out again saying he’d be back later. I don’t think I’d sleep.

 

Update 1/21/20. Ron.

            Pat has become less insecure and jealous in the eight months since we first wrote this chapter. She trusts me more and seems secure in her knowledge that my love for her is unending. Meanwhile, I’ve consciously decided to include Pat in many of my previously separate social activities, especially coffee breaks with female friends and watching educational shows at our home with a male friend.

Ch.24 “Keep on Trucking” but “I Won’t Regret a Thing”

            Shopping today, I ran into a friend I’ll call Ellie whose husband Max is currently in a nursing home trying to get well enough to return home. Both are in their upper 80’s. Ellie told me she’s selling their home of 20 years to move into smaller quarters. I said I was sure she’d miss her gardening, a hobby she’d been devoted to as long as I’ve known her. “Not at all,” Ellie replied. “I won’t regret a thing.” Her philosophy is that they’ve had a wonderful chapter of their lives in that place “but it’s just a house” and it was time to move on to the next chapter.

            I’ve been wondering how well that way of thinking might apply to our Lewy Body situation. One problem is that Lewy Body is a fluctuating disease. For instance, one day Pat can write on the computer; the next day she can’t; and the day after she can again. We cannot say “Well, that skill is gone so let’s quit wishing for it.” I guess I wouldn’t apply Ellie’s model to our day to day living experiences.

            “I won’t regret a thing” does work better for me on a longer perspective. Pat’s counseling career is over; so is her ability to drive. As a couple, we have lost our business partnership as owners of a counseling center. Perhaps most of all, we’ve lost a sense of freedom or spontaneity: everything we do must be gauged against criteria like “How long until the next medicines?” and “Will Pat be able to handle the stress?” of whatever we might consider doing.

            Pat and I once taught at an experimental college named Thomas Jefferson College (TJC). TJC’s informal slogan was “Keep on Trucking.” No matter what obstacles you face, keep moving toward your life’s goals. Of course, that means we must ask ourselves what those goals are at this stage of life. For me I’d immediately name three goals: 1) to preserve as much as possible of our normal lifestyle, especially by staying in our home in the country; 2) to develop new interests and hobbies that Pat and I can enjoy; 3) to practice optimism and find joy every day.

Maybe “Keep on trucking” can merge with “I won’t regret a thing.” Together, this could be our motto: Stay determined to preserve everything that can be preserved but when we must let something go from our lives we will do so without regret.

 

Pat’s comments on “Keep on Trucking” but “I Won’t Regret a Thing”:

I don’t understand keep on trucking but don’t regret a thing. It seems to me when I keep on trucking I’m always involved in something and I don’t want to leave it behind usually. If I do have to I can but I don’t need to. I do get ideas that I’d like to explore but they don’t automatically fit into our life now, so I don’t always bring them up. Sometimes I think if I bring them up Ron won’t like them. For example, if we had a boat, we could go exploring a little, go fishing a little, look at other areas along a waterway and have some new experiences but since we don’t it’s really hard to do. If there were places Ron felt good about my exploring, that would feel good to me. Looking for rocks or other things like that, that would feel good. Anywhere. There’s lots of places we could look but we don’t. We have friends who do that, and they seem to enjoy it. I think I would too. Also, if we decided we really wanted to garden together, for example, that could lead to lots of interesting experiences for us.

In order to keep on trucking, you have to start somewhere.

Ch.25. Caregiver Meltdown.

            I am writing this piece almost exactly 24 hours after I had a gigantic, ugly, scary meltdown. Things hadn’t been going well between Pat and myself over the last several days. I felt she was regularly criticizing me over trivial issues. She said I was being oversensitive and misreading her remarks. I’d become frustrated many times during this period but only said anything a few times. When I did say something it only seemed to make things worse. Previously satisfying times together, such as our morning shower, were becoming increasingly uncomfortable and anxiety producing. Rather than really trying to figure out what was going wrong, I started avoiding Pat. I didn’t talk with her or anyone else about my increasing frustration.

            I was beginning to make supper when Pat told me she was going outside for a while. That was ok. But when I stepped outside to call her for dinner, I found myself staring at our quarter horse Lakota. Big Lakota. Lakota untethered. He was standing near Pat, who was looking remarkably unconcerned about Lakota’s presence or her safety.

            I held myself in check for one question. “How did he get out?” I asked. “Oh, I let him out,” Pat replied. And that’s when I blew.

            “Why the f… did you do that? “;  “How the F… will we get him back in?” “F…F….F….” My vocabulary was whittled down to one word in barely ten seconds.

Pat cried. She defended herself. She yelled a little, but she didn’t swear. Meanwhile, I got a rope and convinced Lakota, who was too busy eating sunflower seeds to concern himself with our argument, to walk back into his fenced field. And about then is when I started to feel like an idiot. If only I had stayed calm, I could have taken Lakota back to his field without incident. I had managed to convert a “3” on the problem scale into a “10.”

            An addictions counselor named Sondra Smalley used the term “tolerance break” to describe moments like this. Tolerance breaks occur when a caregiver ignores his or her feelings, wants and needs too long in the name of caring for another. The ensuing meltdown may take many forms: depression, anxiety, apathy, etc. My tolerance break took the form of very loud, angry swearing.

            I want to give Pat credit here. Not only did she stay relatively calm during my meltdown but later that evening she helped me process what had happened. She also encouraged me to call my brother Don so I could arrange for him to be my support person when I feel upset or emotionally drained. Additionally, I am contacting my children to arrange a weekend getaway for myself soon. My hope is to have learned enough from this meltdown to prevent another one in the future.

 

Pat’s comments on Caregiver’s Meltdown:

 Ron has become more critical of me lately, and has had some

tolerance breaks, that have included meanness which hasn’t let up right away.

            I felt awful during Ron’s meltdown, yelling and swearing at me. Otherwise, if we could figure out how to master the strong reactions that came out here, I would be fine with his being here and staying here and being my husband. I married him without meltdowns. They’ve been few and far between. We get over arguments quickly in general. That doesn’t worry me. But this meltdown has me worried. I’M BEGINNING TO FEEL MORE FRIGHTENED THAT HE IS ON HIS WAY OUT.

If taking a weekend off means having our kids or someone else taking care of me, that disturbs me. I want to be trusted and I think I am trustable. Ron always says it’s about safety, but he has yet to show me in a lot of clear ways that it is about safety. If Ron or somebody else has to be here you’re not talking safety. You’re talking guardianship. That’s part of what is freaking me out. I want to be Ron’s wife, not him be my guardian. And I think with some additional teaching I could be a good guardian of my safety, but I don’t always get educated in that way yet.

I believe I could get along here at home on my own. Some of the time we each have to be able to be independently safe.

 

 

 

Ch.26. Porch Bird Watching on the First Beautiful Spring Day of the Year.

            Today, in mid-April, was the first 60 plus degree day this year here in north central Wisconsin. Pat and I sat on the porch this afternoon watching sparrows, blue jays, doves, nuthatches, cardinals, and finches dart to our feeders and seed-strewn ground to snatch up corn and birdseed, while we were listening to robins, crows, and even a pair of sandhill cranes in the distance. The sun was shining, a rarity after a winter of heavy snow and early spring rainstorms.

            This season is special in all the usual ways – the wonder of a whole region of the world returning to life. But it’s also special in another way. This is the first anniversary of Pat’s Lewy Body diagnosis. When I look back at this year, I have many good thoughts. First off, Pat is functioning at a reasonably high level. This is partly due to the effectiveness of her medicine, a generic form of Aricept. This medicine prevents the breakdown of acetylcholine, a neurotransmitter essential for muscle movement, memory, mental alertness and concentration. Since Pat’s brain presumably produces too little acetylcholine it is important that what she does have gets used completely before it breaks down. That’s Aricept’s job.

            However, I want to give Pat a major share of credit. I won’t just say she’s faced her disease courageously, although she has done that. More importantly, she’s let herself feel all her emotions – sadness, anger, fear, joy, loneliness, grief, melancholy, etc. – as they have emerged. Her emotional honesty has helped both of us engage our new reality. Lewy Body is not something you pretend isn’t happening. It is something you must own up to every day, with all your feelings.

            We’ve had to restructure our lives this past year. Mostly we’ve simplified things. Fewer trips; more regular routines; more time together; more time “being” and less time “doing.” I’m personally surprised by how little I miss leading professional seminars. Much of what was very important in the pre-Lewy Body Era has become optional at best. I’m not saying it should never have been important, though. Every era in a person’s life, and apparently in a couple’s life, creates its own meaningful challenges. I loved doing what I did, alone and with Pat, but all that is a relatively lower priority today.

            Here comes another year. What to hope for? Certainly, staying the same, maintenance, is a practical goal. Buying time for the new drugs being developed which are designed to reverse dementia to find their way to us. Also, peace of mind for both of us, sharing our feelings, facing the bad days with equanimity and experiencing the good ones with joy.

            We are looking ahead to our 54th anniversary this July. Amazing!

 

Pat’s comments on Porch Bird Watching on the First Beautiful Spring Day of the Year.

            Watching the birds and listening to them was wonderful. I went out on the porch and tweeted to them for awhile and they answered. They were very small in a high tree so I couldn’t tell what they were, but they answered me in the same language. I really enjoyed sitting with Ron in the breeze watching the birds. He could point out more kinds than me but still I could see the dove right away. It was a lot of fun and it was very nice being together and being relaxed that way. It felt like old times.

            I love Ron. He is the love of my life and he makes everything more wonderful for me.

            I’m hoping that I can do less wandering around in my early morning sleepy awake period, so I won’t upset Ron so much. Although I have a spottier memory, I do think I am continuing to improve. Some days are better than others and I look forward to the days that are best. I hope many of them will be in the future. I want to continue to grow. I don’t intend just to decay with Lewy Body.

            What I miss most now is my freedom to go driving and walking and biking and to go places to be alone. I’ve always loved that. Perhaps I’ll get well enough that I will still be able to do some of that. Whatever, I’m very happy just being with Ron and I feel like I will continue to get better.

           

 

 

 

 

Ch.27. Blackcap Pie, Memory Loss and Confusion.

            We had company yesterday morning at breakfast. I made waffles. Then the four of us took a ride to view the Borst County Woods, only to return here to share a piece of my homemade blackcap pie. Later that night Pat and I finished it off. That’s when things became a little strange.

            “Where did these berries come from?” Pat asked. How could she not know, I thought? We’ve been picking blackcaps from our bushes right by the house for at least a decade. It’s something we look forward to every year. But when I tried to remind her, she had no recollection. I even tried showing her the quarts of berries in our freezer. “Tomorrow you’ll have to show me what you’re talking about,” finished our conversation.

            I felt a wave of sadness that persisted through the night. Picking blackcaps was one of our nicest shared endeavors. Talking as we picked, consoling each other when one of us became snagged on a sharp branch, packing the berries into freezer bags, making pies and berry crisps, all that was an integral part of being us. Lewy Body wasn’t just stealing my wife away from me. It was eroding that sense of “us” that I never thought we could lose. 

            But then things changed again this morning. When I mentioned my sadness that she couldn’t remember our berry picking Pat quickly corrected me.  “Of course, I remember that”, she said. “I’m looking forward to picking again this year.” Pat knew where the berry patches were. No memory loss at all. She hadn’t forgotten, Pat assured me. She had just misunderstood what I said last night.

            Here’s what I think happened, although Pat may disagree. By evening Pat was tired. It had been a long day of friends and family (Easter Sunday). I’ve noticed that her memory tends to worsen with fatigue. I believe Pat really did have memory loss last night but only for a little while. This would also be an example of Lewy Body symptom fluctuation. Symptoms come and go, often unpredictably. Forgetting last night but remembering today. It’s confusing.

            I feel relieved. That part of “us” is back. I think I’ll go out today and thin out that berry patch so we can collect berries together this summer.

 

Pat’s comments on Blackcap Pie, Memory Loss and Confusion.

            I didn’t remember we had all those berries in the freezer because I hadn’t looked in the freezer for a long time. I’m always afraid to find ice cream there.

            I have been remembering picking in the patch more recently. I’m looking forward to the berries coming there and along the walls of the garage, but they haven’t yet. I just have to be patient. It takes warmth and sun and time for them to grow but I no longer wonder where I’ll pick them.

            I could have been tired that night when Ron asked me if I remembered the berry patch, but tired is different than dementia.

 

Ch.28. Yes! Pat’s Test Scores Have Improved.

            April 2019.

We’ve just returned from a visit to Pat’s neuropsychologist, the individual in charge of memory and cognitive testing. The wonderful news is that Pat tested about 25% better this year than last. That confirms what members of our family have been saying (I think I’m too close to tell), that Pat is functioning at a higher level than before.

            Why? There are probably four medical/medication contributors: 1) Generic Aricept, her primary cognitive medicine that she only began a year ago. Aricept helps her brain retain a neurotransmitter named acetylcholine that is critical for memory and becomes depleted during Lewy Body Dementia; 2) a preventative antibiotic that has kept Pat from experiencing any more urinary tract infections – she had four the previous year; 3) insulin that she’s only begun about two months ago for her diabetes. This medicine seems to be helping Pat with energy level and mood stability; 4) Melatonin to help her sleep better and wake up with fewer bad dreams and rapid eye movement disturbances.

            But let me give credit to Pat as well. She’s steadily faced up to her disease, not letting it crush her spirit. Pat walks when she could sit. We just enrolled in an advanced online course on Polyvagal Theory, even though she could just drop her continuing education requirements. As said in a previous chapter, Pat “keeps on trucking.”

            I’m not sure how Pat feels about this report. But I feel relieved. True, Pat still has a debilitating illness, but I’m now hopeful she will live longer than my habitually pessimistic mind believed. To be honest, I was thinking 3-4 more years if she kept getting worse. However, there are members in our support group still doing well five or more years after their diagnoses. Now I’m hoping for a decade or longer together in mind and body.

Pat’s comments on: “Yes! Pat’s Test Scores Have Improved.”

                        It was a wonderful moment when the female psychologist who was testing me said “I was so wrong about you.” I said, “How so?” and she stated “Last time I tested you I thought you were sliding down into Alzheimer’s but your testing was so different that there were three areas where you were much better than you were before.  I was really wrong about you. Now I’m excited about where you are going to go.” I want to say that I am very pleased about this as I haven’t felt as bad about myself as I had for a long time and now I’m feeling even better.

Ch. 29. We are “Care Partners.”

        Pat and I recently attended a local conference for professionals treating dementia patients. People there were using the term “care partners” as against “caregivers.” Since language does affect behavior Pat and I decided to consider the differences between these terms. Fortunately, several bloggers have written about this matter. One particularly useful one was written by Linda Shin on a blog about Huntingdon’s Disease maintained by Stanford University. But I’ll summarize the thoughts of others here as well.

            One author noted that the term “caregiver” itself represented a positive transformation from “caretaker.”  Caregiver implies more respect than caretaker; it is less objectifying. Still, though, caregiver suggests that someone is providing care for someone who is unable to care for him- or herself. There is a basic inequality between caregiver and care receiver that is built into the concept.

            The term “care partner,” however, is egalitarian in principle. Lewy Body care partners collaborate as equals as they wrestle with issues such as medication choices, living arrangements, and finances. It’s much more a two-way street involving cooperation and mutual respect. And, for me, “care partners” reflects our 53-year marriage. I suppose we’ve both become care givers at times, say when one of us was ill, but overall our relationship has been founded on the principle of partnership.

            The term care partners also makes room for family members, friends, support group members, and paid professionals as part of a shared community.

            Let me provide one example of how care partner works better than care giver for me. As Pat and I have discussed my taking time off (partly to help prevent another melt down), at first, I was haunted by the idea that I was abandoning someone who would be left helpless, unable to take care of herself. After all, she was the care receiver, a passive role. But Pat is not helpless. When she realized what was occurring, Pat was able to sit me down so we could talk together about my need for away time. Together, we came up with a plan. True, Pat agreed, she might need some assistance when I’m away. However, Pat and our children could easily resolve those issues.

            So, considering myself a care partner rather than caregiver is a tremendous relief. I don’t have to do this alone. We are still a team. We are partners in care and partners in caring.

 

 

Pat’s comments on We are “Care Partners.”

In my opinion a person whose partner is diagnosed with something may feel badly about themselves as well. I think that’s very unnecessary and “care partner” to me implies I am giving respect back to Ron and perhaps he needs that. There is a basic inequality between “caregiver” and “care receiver” that is built into the concept and I am not sure it is always necessary.

            And I don’t always need a child to add to my care. Often, I can handle things on my own except I cannot drive.

 

Ch. 30. Some Mornings are Full of People.

            This morning Pat woke up trying to speak with several people. These people had various jobs to do and Pat was supposed to help them. But she couldn’t find them. Pat was distressed because she felt she wasn’t doing her share. She asked me where they were, stating that I too had spoken with these men and women.

            I couldn’t see or hear anyone. I was certain we two were the sole occupants of our home. That’s what I told her in what I hoped was a neutral voice. But Pat didn’t believe me at first. She was positive I’d seen and heard the same people with whom she’d been communicating. Pat was becoming confused, anxious and angry. This in turn worried me since from past experiences I’ve learned that the longer this disoriented state continues the worse it gets. If we couldn’t cut it off, she might reach the stage where she feels “crazy” and loses her sense of personal identity: “I don’t know who I am any more. I don’t know what’s happening to me.” This has only happened a few times; it is painful, very painful, to witness, much less experience.

            So, what could we do? The answer today was to grab a bite to eat and take a ride in our car with our two loyal canines. I could feel Pat first calming down a little and then gradually reorienting to our shared world. Later, we did yard work together. Three or four hours after the beginning of the episode Pat told me she felt fully reconnected.

            I imagine mornings are tenuous because Pat gets caught in what has been labelled as REM sleep disorder. She seems trapped in a stage halfway between awake and asleep. What bothers me the most is when it lasts not for minutes but for hours. That’s when I realize how hard Pat’s brain must work to keep her safe and stable.

 

Pat’s comments on Some Mornings are Full of People.

It never struck me that my brain is working to keep me safe and stable when an episode continues for a longer time. However, shortly after this awareness that I’m talking about now I have learned that I can thank the people who seem to be here to me and tell them I’m not a counselor anymore and tell them to go somewhere else.

When I do say “thank you but I don’t do this anymore, so you’ll have to go somewhere else” almost always these people leave. This is a real relief to me.

 

 

Ch.31. “I Know You are my Husband because You are Wearing the Same Shirt.”

            Awkward moment. Pat says: “I don’t think I’ve been hallucinating much, have I?” I answer: “Well, this morning you told me there was another Ron in the living room.” “That’s crazy,” she says, “There’s only one of you.” She doesn’t remember anything at all about saying that.

          This interaction took place about one month ago. Then yesterday morning she asked me where the other Ron Potter-Efron was. I replied that I am the only such person. She began to insist that there was another one somewhere around here, but then she stopped herself, looked at my plaid shirt, and said “I know you are my husband Ron because you are wearing the same shirt.”

          Pat says her great fear is that I will leave her. Either I will just walk away, or I’ll put her in a memory care unit. My great fear is that one day she will simply not recognize me anymore. I don’t want to become a stranger in her life. I don’t want to have to compete for Pat’s love and attention with other Rons. Now I understand that Pat would never want that to happen. And I also realize that Lewy Body Disease is less predictable than Alzheimer’s Disease, during which such identity loss is common. But there are no guarantees. We are not in control. The worst could happen. One way or another, both our fears could come true.

As you may have already realized, our two fears are identical. We are each terrified of losing our “til death do you part” bond well before death.

 

Pat’s comments on “I Know You are my Husband because You are Wearing the Same Shirt.”

            I also recognize that my comment about his wearing the same shirt embodies exactly the same thing, that you are still here and I am still here with you.

ADDED NOTE: Dec.30, 2019. Pat and I are singing together. She tells me that “You have a good voice. That other Ron has a terrible voice.” Hmm.

Ch.32. Today’s Surprise: Ron gets a Heart Stent.

May 23, 2019.        About one month ago I noticed I was having breathing problems while exercising. They didn’t go away, so I contacted my doctor, James Storlie. He listened, examined, and ordered an array of tests. Something in the stress test looked bad and so he made an appointment for me with my wife’s heart doctor, Vishnu Patllola. I walked into his office for a consult and walked out (with Pat) to the snack bar, but then received a call to see Dr. Patllola again immediately. He’d spotted some threatening data in my EKG. Soon I was in a hospital gown. Several hours later I was in recovery for an angioplasty that repaired a 90% occluded artery.                

Thankfully, all this happened in Eau Claire on a Wednesday, my daughter Jenny’s day off. She met us at the hospital within 20 minutes and stayed with Pat throughout this scary ordeal, soon joined by my daughter Cindy, son Joshua and daughter-in-law Patty. I simply would not have left Pat alone. I don’t know what people without family do in these types of situations.

The “kids” took turns helping. Joshua stayed overnight with Pat at our home; Patty made meals and injected Pat’s insulin. Cindy stayed overnight with me in the hospital and helped when I developed a migraine; Jenny was present all day and helped Pat stayed calm.

            I’ll ask Pat to describe in her section what she went through that day. I did hear from my children that she held together well, albeit with a couple exceptions.

            Now, for a few days, our roles are reversed. She’s the one keeping an eagle’s eye on me, reminding me not to lift anything over ten pounds, to avoid the steps, to BE CAREFUL! Yikes. She’s good at it. Maybe she learned from me? I certainly see how this pattern could quickly grow old.  I think I understand better now how my worrying affects Pat, even if appropriate.

            Then there’s the bigger picture. Who would look after Pat if I weren’t there? How would she survive?

My children and Pat did everything possible to answer these questions. I saw how our children’s love translated into real help, how they worked as a team, how capable they are as caregivers, care partners, caring people. And I saw Pat pull herself together enough to be helpful and caring and loving to me. I am relieved at a fundamental level. I trust them to handle the future, no matter what happens. I am not indispensable. Whew!

 

Pat’s comments on Today’s Surprise: Ron gets a Heart Stent.

            I was terrified when I heard that Ron needed a stent but I understood what was going on. And when I knew the kids were there and they were most of the time I didn’t become extraordinarily worried. I did put in the back of my mind that I had to remind Ron not to start lifting things immediately and to be careful, which goes right to Ron’s comment about how his worrying affects me even if appropriate.

            I had an initial anxiety reaction at night. I was confused about how to feed the cat and dogs. I took time and let Joshua help me figure things out. I also told Joshua that if I were anxious later, he should just tell me to lie down and I’d be fine – and I was.

            I agree that I saw how our children’s love translated into real help, how they worked as a team, how capable they are as caregivers, care partners, caring people.

Added Note: June 1, 2020. Ron. It’s been one year since my operation. I’ve experienced no shortness of breath or other heart related problems and my most recent EKG came back as normal. Still, I remain aware of how fragile life is and I remain concerned, as I think I should be, about what would happen to Pat if I were soon to die.

Ch.33. Pat Tells Our Book Club Members She Has Lewy Body.

           

            Pat and I first addressed the question of whom to tell you have Lewy Body in Ch.7. We discussed the concepts of acceptance, shame, embarrassment and trust. Here is a recent example of how Pat handled one particularly interesting situation.

            We belong to a small (9 person) book club that meets once a month at the Strum Public Library. This month’s selection was Before We Were Yours, by Lisa Wingate. Two of the central characters are elderly sisters, one of whom has advanced dementia (never labelled as to what type) and one who has been similarly diagnosed but actually is still quite competent. Group members began discussing people they know with dementia. It became evident that only one person there besides us knew Pat had Lewy Body (Pat had told her so a few months before but asked her to keep that knowledge private, and to her credit, she had done so).

            Pat took the leap. She mentioned that she had Lewy Body Dementia. The startled response from several people was “What’s That?” It’s amazing how few people, even highly educated and well-informed persons like those in our book club, have never heard of Lewy Body Dementia. But, to be honest, I was one of those people until Pat was diagnosed.

            Pat and I took turns talking about Lewy Body. Mostly, we differentiated Lewy Body from Alzheimer’s Disease. But Pat also revealed a little about how this disease has affected her memory, health, self-esteem, and spirit. Everyone there was caring, kind and curious. Afterwards, Pat told me she felt good about telling the group and receiving a positive response. It helped her feel better about herself. I’m sure the opposite would have happened is she had kept silent.

            I’ve reviewed in my mind Pat’s functioning in the book club. I don’t think she’s ever said or done anything that would appear dysfunctional. Instead, her comments have often been thoughtful and insightful. It doesn’t hurt that she was a literature major in college and grad school. I think anyone observing her at the club might only perceive that her reactions and responses are a little slower than others.

            Personally, I’m grateful Pat chose to speak to the group. On one hand it’s a relief not keeping hidden this important part of our life together; on the other hand, her revelation adds to the people we know care about and support us.

 

Pat’s comments on Pat Tells Our Book Club Members She Has Lewy Body.

I have a belated reaction to what Ron has written here. My belated reaction is that Ron had mentioned Lewy Body Dementia and yet now he is behaving as if what he said is something perfectly normal. He is still saying that I have indicated I have been diagnosed with something called a dementia. I doubt that people understand what a dementia is. Having a dementia means that that person may or may not think of themselves as being demented and yet still have quite complicated reactions to people who think they have dementia or are demented.     It seems we have to discuss what it means to have a dementia and what it means to be demented.

              Frankly, I recognize that I have certain limitations that do not leave me to apply the word “demented” to myself unless I am doing something specific that leads me to think I am acting in some very odd way. When I talk about Lewy Body and when I discuss changes in my perception of life that relate to having Lewy Body, I do not experience myself as behaving in a demented manner. My experience tells me that other people think differently, and I wish they would become more precise. They might say “Oh, sure, you have a dementia” but they do not talk about how that dementia works, or sounds, or how I sound different because I am “demented” and affected by dementia.

            Dementia or demented is not something about who I am.

            I don’t believe that I hardly ever sound demented in the sense that I am saying things other people can’t or won’t understand. I do believe that because they can say “Oh, she’s got dementia” that gives them a lot of right to look at what’s wrong in what I’m saying. It’s a label; it’s not a respectable label and I don’t own it unless I am specifically behaving in a way that people say is not understandable.

 

Ch.34. Trying Out a New Group.

            Pat and I have been looking for a couple’s group we could attend in Eau Claire to supplement our wonderful St. Paul Lewy Body Couples group. The most promising we could find was an early memory loss group which we thought would be mostly or completely focused upon Alzheimer’s Disease.  Despite that, we decided to give it a try.

            Our first surprise was that we recognized two of the couples in this group – one man was one of our previous employers and another couple were old friends with whom we’d lost contact. I found that to be a relief. These were good people whom I could trust. As we suspected, though, we were the only Lewy Body partners there. However, someone quickly asked us to describe Lewy Body to them – how it was different from Alzheimer’s. Also, the facilitator mentioned that her mother had Lewy Body at the end of her life.

            Our second surprise wasn’t so pleasant. It turned out participants split into two groups after a brief introductory period. Pat was supposed to go into one room with others with memory loss while I’d stay with the caregivers.

            Pat declined to leave, though. She doesn’t believe she has much memory loss, and she didn’t want to be labelled as such by anyone, including by herself. I was surprised and relieved that the group leader welcomed her into the caregiver group, and nobody objected.

            One topic that emerged was how our partners tended to minimize their condition. For example, one man had stated during introductions that he was doing well and was stable regarding memory retention. Not so, not even close, said his wife later to our care partners group. I wonder if Pat has any realization that she too minimizes. For example, Pat thinks her memory is still pretty good and yet she has no recollection of the red Buick Rendezvous that we drove for a decade and just retired six months ago. That was her favorite vehicle but now it can’t be retrieved from her memory banks.

            We did attend again the next week. This time Pat chose to try out the “patient” group. She will comment on her experience there below.

 

Pat’s comments on Trying Out a New Group.

 

Maybe I forgot about the Rendevous because I can’t drive anymore. It was my favorite car and all of a sudden, I was told I couldn’t drive it or any other car anymore. I’m suggesting that the experience was quite a shock to me and not one I need to focus on in my life.

            My experience with the “patient” group was that I felt way less involved and included because this other group excluded so much from their experience. Those that had gone through simulation tests and been told they couldn’t drive anymore were often extremely angry about it whereas for the most part I’ve tried to address the issue of not driving and being able to drive more gently.

            One man in the group was angry at the whole world. I was not. I am not. And when I saw the doctor in charge of my testing, he said to me that if I keep continuing the way you are, that perhaps we could find some way you could begin to drive again. This was the first time I ever heard a person in charge of adjudication behavior like this to say that sometimes the problem can be readdressed and changed.

 

Ch.35. Taking a Chance with a Combined Birthday Celebration.

            Our 75th birthdays were approaching. Mine is May 25, Pat’s Sept.1. I had a thought: What if we had a combined birthday celebration about half-way between, namely on June 30? Pat approved so I sent out invitations.

            But as the day neared, I began having misgivings. Our guest list kept growing from the 15-20 persons I envisioned to over 30. The room we’d rented was listed with a capacity of only 18 and it was too late to change. There certainly would be a lot of noise and a chaotic atmosphere, exactly what causes trouble for people with Lewy Body. Pat is particularly sensitive to noise, as mentioned previously in this journal. Was I setting her up for a miserable experience?

            To make things worse, Pat began having digestive problems a few days before the event. By the morning of June 30, she told me she could attend the party, but she wouldn’t be able to eat.

            One thing I’d done with Lewy Body in mind was to schedule the party from 2-4 p.m., just two hours long in order to minimize Pat’s exposure to the noise. Also, early afternoon is usually a good time for her if she isn’t too fatigued. However, I had no doubt that today she would be tired during the party because her illness had depleted her reserves.

            It’s hard to be optimistic when you’re worried. Instead of looking forward to the event I was mostly just hoping we could get through it.

            I wish I could say that everything went fine. No. But there was no disaster either. Pat basically sat in one spot and let people come to see her. But she couldn’t eat, and she soon began looking tired. By the end of the two hours (which became three hours) she was more than tired; she was totally exhausted. Finally, she asked me to help her to our car where she waited while my children and I cleaned up.

            Was it worth it? On a positive note, we were surrounded by loving family and caring friends. Memories were created that will last beyond our lifetimes. We took advantage of a once in a lifetime opportunity to do something creative: a shared 75th birthday celebration. But the day took Pat to the point of exhaustion. As I write this the morning after I have no idea how long it will take her to recover.

            I guess the main idea here is the conflict between Pat staying safe by avoiding excess stimulation and taking the risk of doing exciting activities that could exacerbate Lewy Body symptoms. This time we took the risk. I think the payoff – a once in a lifetime celebration – was worth it. But nothing comes easy with Lewy body. Pat paid the price in terms of physical exhaustion and mental fatigue.

 

Pat’s comments on Taking a Chance with a Combined Birthday Celebration.

            It took Ron a long time to figure out that my birthday was actually two months after the time of our celebration, not halfway between. [Ron:  I computed the date of our celebration wrong, so it occurred closer to my birthday than Pat’s.] I was aware that Ron had a wonderful time. I got tired out early but allowed myself to feel especially gifted by people who came to talk with me more than once or who brought something to show me about our relationship with them. I still got tired though.

            The feeling of exhaustion was that I was tired, and I didn’t know what to say anymore. I also wanted to help pick up and clean up, but I felt too tired to do that either.

            During the next couple of days, I calmed down and I now remember it with a certain happiness. A few days after, I complimented Tatiany on the dress she was wearing at the party and she knew exactly what I was talking about and was very happy and I knew she understood how beautiful she looked to me. I knew she understood how beautiful she looked.

            I was almost overwhelmed with how helpful my children were in the cleaning up and how interested they were in helping me move on through my day. I could tell that they loved me. And I knew Ron loved me as well. I was even aware that though I sat in one place most of the time and Ron walked around talking that he was very proud of me.

            I remembered many of the people who had come and am hopeful of seeing them again.

 

 

Ch.36. After a Crisis is Over.

            I mentioned in Ch.35 that Pat was suffering digestive problems at our combined birthday party. Both constipation and diarrhea are common problems for people with Lewy Body – it’s a total body disorder, not just a cognitive issue. I won’t go into detail, but Pat became weaker and weaker over perhaps ten days. She finally landed in an emergency room where she received saline solution to relieve the accompanying dehydration Thankfully, since then her digestive symptoms have lessened. She’s been gradually regaining strength.

            You know, if you’ve ever had a loved one in crisis, just how physically and mentally fatiguing it is for both the ill person and his/her caregiver. You carry on because you must. Rest comes later. Fortunately, our son Joshua and his wife Patty understand these things. Patty’s daughter Tatiany has had a life-threatening heart condition from birth. They know how you can function through a crisis without realizing how bone tired you are until it’s over. And even when it is technically over your body retains a lingering sense of anxiety, a “what will go wrong next?” feeling.

            So, once the digestive problems abated, Joshua and Patty offered to take Pat shopping. She would feel good about getting out of the house. I would benefit from a few hours to do whatever I desired. The only issue for me was that I had no idea what I might do. Finally, I asked myself what I would like to do but probably would not do if Pat were home. The answer was to have coffee with a friend. I called my friend Howard; he was available. Two hours later Pat was shopping, and I was at a café talking with Howard. I made a promise to myself, by the way, that under no circumstances would I talk about Lewy Body. There was no need to do so. Howard is a frequent visitor to our home. He has frequently witnessed our Lewy Body influenced life. 

            I didn’t realize how badly I needed a break until I took one with the help of my family. Pat was in good hands; I could relax and feel safe because I knew she was safe. I felt (almost) no anxiety for the first time in weeks. Crisis over.

 

  Pat’s comments on After a Crisis is Over.

            Ron’s feeling the crisis was over was a big relief to me (maybe partly because I was the crisis).

 

Ch.37. Pat Realizes She’s been Hallucinating.

            “Ron, I want the truth. Was anyone here in the house besides us?”

            Mornings are the hardest time in our marriage since Lewy Body set in. Pat often wakes up in that in-between state some people call a waking dream. She is certain that other persons are in the house, often children but sometimes adults. She may believe we’ve begun doing something together that we need to complete, such as packing a bus full of belongings to take to others. If I suggest, much less try to convince her that she’s hallucinating (or being delusional may be a better term) she often becomes angry. I could say nothing and go along with her fantasy but that doesn’t always work either. For example, then Pat might insist we get up and find food for the kids. Basically, it’s a morning by morning situation in which no one approach always works best.

            This morning Pat thought several other people were in our home. She was anxious that they would show up in our bedroom. “Don’t you see them?” she asked me. When I said “No, I don’t” she began to become upset. But then something unusual occurred. She sat in bed a couple minutes and then turned to me. “Are there any other people in the house?” I hesitated, frankly not eager to incur her ire with an honest answer. I told her that usually I would answer her question with a cautious “Well, I don’t see anybody right now.” “I want to know the truth, Ron. What is real?” So, I told her that we were the only people in our house.

            Pat took in my response and its full implication: “That means I’ve been hallucinating, doesn’t it?” she asked. I nodded. She cried a little. She said she hated having Lewy Body Disease. She wanted to wake up in reality, and not in some hallucinatory dream world. She wanted to know how often this happened. When I guessed maybe once a week, she looked somber and scared. For a few minutes all her denial and minimization vanished. We shared a glimpse both of our current situation and of an uncertain future.

            Being in reality is a mixed blessing.

Pat’s comments on Pat Realizes She’s been Hallucinating.

            I’m aware that all of my memories may not be true memories but in general I think that what comes through my mind is relevant to where I’m at. I may still talk on the phone or think I’m talking on the phone but when I wake up and realize that Ron is not aware of it that doesn’t bother me at all. In fact, I hope he’s forgotten that I’d been talking on the phone in my sleep or whatever. My goal is to deal with our life as a normal life, not one with odd and weird things intruding.

Ch.38. From Good to Bad in an Instant: Fluctuation in Action.

            8:00 p.m. We’re watching a nature show about Yellowstone National Park. It’s beginning to rain hard, but all seems well. Just Pat and me and the dogs.

            8:05 p.m. Pat: “Where’s the other Ron?”

                              Ron: “What do you mean, where’s the other Ron? I’m the only Ron.”

                              Pat: “No, you’re not. Where’s the other Ron, my father Ron.”

                              Ron: “Your father was named Stan. I’m Ron, your husband.”

                             Pat: “I know my father was Stan. I mean my other father, Ronald T. Potter-Efron. He’s the one who painted that picture of the chickadees on the wall”

            If you love someone who has Lewy Body Disorder you better be prepared for instantaneous changes. One minute everything is normal, the next moment you are in a different world, trying to understand what just occurred.

            Here’s what I think happened. The rainstorm outside scared Pat. Feeling unsafe, Pat needed comfort from the one person in her life who was always there for her in her childhood, her father Stan. But Stan died many years ago. That left me – but a husband can’t offer the deep sense of emotional security only a parent provides, the safety of a little child asleep in her father’s arms. So, Pat confabulated – her mind created a merged figure, a “father Ron” who offered sanctuary in the present. Still, she couldn’t quite complete the delusion. She asked: “Where is he?” because he wasn’t fully present even in her mind.

            Pat seemed confused. Her brain was working way too hard trying to help her feel safe. Tired, she went to bed. However…

            10.p.m. Pat : “I know you. You’re Ron and you’re the one who painted the chickadees, aren’t you?”

            Pat was back, father Ron was gone, and I felt a wave of relief.

 

Pat’s comments on From Good to Bad in an Instant: Fluctuation in Action.

 

            “My Dad used to call me his little chickadee.”

             “I just got things a little mixed up.”

            I remember some of the times I confabulated when the Lewy Body was just starting.  I was very scared and I didn’t know what was going on. Once there was a Christmas story in the family about guys coming and taking girl out into the snow. I was afraid and I was supposed to go somewhere but I was unable to go. I was in bed. I was very scared then. I got all mixed up and I called you Daddy back then and you responded by putting your arms around me and helped me feel safer. But you did say not to make a mistake – I’m not your Dad. And I remember all of that now. When I get very tired or very scared sometimes I think of you in that way but I always know you are Ron.

           

 

Ch.39. “I Wasn’t Talking in My Sleep. I was Talking in Your Sleep.”

            Four a.m.; I awake to hear Pat dialoging with some of her “waking dream” associates. Pat says a few words, then pauses and waits for a response. I think sometimes someone answers but sometimes nobody speaks up. Either way, Pat takes back the conversation and speaks again. Her tone is cheerfully confident and pleasant. Still, it is 4 a.m. and I am tired.

            I try to be diplomatic. “Dear, “I say, “You are talking in your sleep.”

            “No,” Pat responds laughingly, “I’m talking in your sleep.” She does promise me, though, that she’ll soon end the conversation for my sake so I can get back to my own dream state.

            Humor is joyful even at 4 a.m. I’m grateful that Pat still has a good sense of humor. Lewy Body hasn’t eliminated that part of her personality and hopefully never will.

 

Pat’s comments on “I WASN’T TALKING IN MY SLEEP…”               

            I said that because I realized I was talking out loud and you were hearing me and supposedly sleeping. I was joking. I didn’t know what to say.

 

Ch.40. Pat Joins a Memory Choir.

            August 2019. Several months ago, Pat and I attended a memory care conference in Eau Claire. We walked through the exhibitor booths and met an energetic and friendly woman named Cathy Reitz. Cathy is a retired music teacher who directs the Stand in the Light Memory Choir. Members of the choir all have memory loss issues or are with someone with memory loss or are volunteers who partner with memory loss participants. Cathy invited us to join the choir when it restarted in the fall. She then sent us a reminder before the first fall rehearsal.

            Pat has an excellent soprano voice; she was a soloist in high school and sang with symphony orchestras, but she hadn’t been singing recently. She decided to go to the rehearsal. There, at a local church, we found about 40-50 participants, many of whom were repeaters from the year before. After coffee and treats everybody adjourned to the performance area and found places to sit or stand. Pat, being small, was assigned to sit in the second chair in the first row and was given a partner who sat next to her. I chose to watch rather than sing. I wanted Pat to have something that was hers and I wanted a chance to feel proud of her.

            Wow! There Pat stood, talking animatedly with her volunteer partner. And another Wow! when the singing began Pat was smiling; she was reading the words easily; she was singing; most of all, she looked joyful. She was relaxed and spirited. And I did feel a sense of pride to see my wonderful wife enjoying life and feeling competent.

            We’re going back next week for the second rehearsal.

 

Pat’s response to “Pat Joins a Memory Choir.”

            I was a soloist in high school and I also took singing lessons from Madie Metzger-Ziegler who sang at times for orchestras in New York.

            Ron chose to watch and sat attentive. And the lady next to me said he was very handsome. She specifically asked if he was my husband.

            I knew several of the songs although they were arranged in specific ways, differently than I had seen before.  I felt I was singing well and on key and I was enjoying myself. I was proud of singing in that choir.  I can’t wait to go back.

 

 

 

 

Ch.41. Ron Makes a Serious Mistake – Then So does Pat.

            I’ve been going to Eau Claire to exercise at the cardiac rehabilitation center since my stent was put in a few months ago. Including travel, it’s about a 3-4 hour trip. Pat stays home alone during that period. There’d never been any trouble until last week. But this time I made a big mistake; I forgot to give Pat her morning medicines, a group of about a dozen pills addressing several medical conditions. Even though this batch doesn’t include her generic Aricept, I’ve noticed from past experience that Pat gets a little weird when she misses all those medicines. I think maybe she begins to withdraw from some of them. At any rate missing her morning medications opens the door for confusion to emerge.

            When I came home from exercising Pat told me that she’d become concerned for Franklin, our elderly three- legged Chow Chow, during my absence. He’s often in pain and has trouble walking these days. She wanted to give Franklin his daily pain pill, which he accepts so long as it comes inside a slice of liverwurst. Unfortunately, Pat couldn’t remember exactly where Franklin’s pill bottle was located. Increasingly concerned and becoming confused, she spotted a bottle of medicine and gave one pill each to Franklin and Levi. That was mistake number one: Levi doesn’t need pain pills. Mistake number two was more serious: Pat gave the dogs my medicine, fortunately only a statin that didn’t seem to do any harm. No damage done, but it was a “could have been much worse” situation.

            I’ve added a couple reminders in our office and on my phone since that day. Hopefully she won’t miss her medications again. However, this incident reminds me that Pat and I live in a fragile world, one in which stability easily gives way to insecurity and safety morphs into danger.

 

Pat’s comments on Ron Makes a Serious Mistake – Then So does Pat. 

            I didn’t know where to find their pills and the things I found weren’t labelled and I thought they might be similar. I knew that Franklin was in pain and I wanted to do something for him. I wish I had waited but I was very worried about Franklin and I didn’t want to just give him an aspirin because that might hurt his stomach.

 

 

 

 

 

 

 

Ch.42. What was Supposed to Bring Pride Brings Shame Instead.

            Pat belongs to the Stand in the Light memory choir, as explained in chapter 40. The choir is named after a song by that name which includes a line stating that standing in the light to be seen as you are is risky for anyone. There is also a line talking about dementia. I’m sure Cathy, the choir director, hopes people with dementia will rise to that challenge, letting people see themselves as they are as human beings with a medical condition rather than as anyone to be avoided or pitied.  She probably also hopes that singing this song will help participants both accept themselves and feel some personal pride in their musical competence.

            After practice Pat told me that song always brings her to tears. I thought that was good until she added: “It makes me feel so bad about myself. All I think about is what a failure I am in life and in all the things I can’t do anymore.” The song was triggering shame rather than pride.

            The irony here is that Pat and I have written a book about shame entitled “Letting Go of Shame.” It was our first collaboration, back about 1979, and It’s still available through Hazelden Press. But it’s one thing to understand the concept of shame and another to be able to come to grips with it when you are afflicted with Lewy Body.

            We wrote that shame has five main messages: I am not good; I am not good enough; I don’t belong; I am not loved or lovable; and I should not be. Probably “I am not good enough” is the most common message; “I should not be” is the most painful and dangerous one.

            I’m guessing that Pat believes she is not good or good enough because of her losses, that she feels she doesn’t belong without her counseling career, and perhaps even that she should not be anymore. She says sometimes she feels useless. I think she still feels loved, though, given her strong family support.

            There are five healing messages: I am good; I am good enough; I belong; I am loved and lovable; I am. “I am good” and “I am good enough” help people feel pride.  However, I believe the last message, “I am,” is the strongest. I interpret “I am” as someone observing themselves without judgement. When I can simply declare that “I am” then I no longer need to prove to anyone, including myself, that I deserve to exist.

            Pat is a wonderful woman, full of caring, wit and wisdom. She is good, good enough, held in our hearts, and loved. She is who she is, and that is more than enough.

 

Pat’s comments on What was Supposed to Bring Pride Brings Shame Instead.

            I’m still struggling. Accomplishment was a large goal in my family. My brother never accomplished much, and I was the accomplisher, the one who brought pride to the family, except my mother often shamed me in front of other people, so there was a two way pull. I still have very deep feelings of shame when I think about my past and some of my difficulties with my mom and some of the poor decisions I made. I want to be worthwhile, to always do the right thing, but often I can’t seem to. I’m trying to feel better about myself. Often, I do but not always and sometimes I don’t feel good about myself at all. That’s a long-time condition that I haven’t figured out how to make go away.

            Ron’s love is often the only thing that calms me down and then I feel better.

            I was diagnosed with Lewy Body with dementia. That means I can’t drive and I drove since age 16. I can’t even take the dogs out to find a place to walk them. Those are real losses to me that I am ashamed of not being able to go places with them where I can be peaceful. I have been told by my doctor that I could not drive and that I would never be able to. Driving is a skill I was very proud of and I’ve lost that pride.

            I would say that when we sing the song in the choir about dementia, I used to cry all the time. Now I don’t always although when we had a partial concert this week with only those with memory loss singing and we sang “I want to be seen as I am” I did have a tear in my eye when my son Joshua was looking at me and I felt very strongly that he knew my tear was in my eye. Later when I checked with Joshua, he said he did know, and I felt very connected with him. He responded: “Mom, I love you and I’m very proud of you.” Singing that song was easier than it was any other time and I felt very understood.

 

 

 

 

 

 

 

 

 

Ch.43. “The Apocalypse Arrived and Yet it was Not Apocalyptic.”

            This quote comes from the novel Exit West, by Moshin Hamid. The author writes about the difficulties facing people emigrating from their native lands to new places. Hamid notes that life goes on in these circumstances and people make new friends, discover new activities, create new opportunities, and, eventually, “desirable futures begin to emerge.”

            I can’t imagine a better description of how things have changed since Lewy Body entered our lives. I think Lewy Body Dementia, as awful as it truly can be, has opened us to new friends, new activities, and new opportunities. For instance, we have made many new friends in our Lewy Body support groups; Pat discovered a new activity by joining the memory choir; and we have found an opportunity to deepen our shared love through writing this journal together.

            Let me go a little further. I am retired. I no longer go around the country facilitating professional workshops. I haven’t published a professional or trade book for several years. I no longer make a living as a domestic violence and anger management counselor. All these things were central to my identity as a productive, contributing member of society. Many people like me, whose careers are central to their identity, get lost in retirement. Who am I if I am not doing these supposedly important things?

            A large part of my answer is that I am now half of a care partner duo, charged with helping make Pat’s and my life as rewarding, happy, and healing as possible. I make our meals; I’m in charge of Pat’s medicines. I read a lot about Lewy Body; I’ve become our social secretary; I go to my own caregiver meetings for support. I have become a voice of optimism (not a natural strength) when Pat feels down. And here’s what’s important: I feel I am doing exactly what I’m supposed to be doing with my life. My life is full of rewarding moments. I feel loved and loving.

            Yes, Lewy Body is the apocalypse. And yet, as Hamid writes, it is not apocalyptic.

Pat’s comments on “The Apocalypse Arrived and Yet it was Not Apocalyptic.”

            I have an illness. How is that an “apocalypse?” Tell me, what has ended and been destroyed? I wouldn’t know what it is. I don’t think Lewy Body is an apocalypse. I think it is a big change. Could you even say it is a change? I don’t know if you could. It’s some kind of change. There are changes that have happened to me partly because I have Lewy Body. For example, the inability to drive and go to certain locations which were very nurturing for me and powerful for me has ended. That doesn’t mean that everything will end but some things have ended that were very important to me and to my experience of the world.

            A lot of things have changed and some of them are useful and good for me but I don’t think the essence of that is very easily understood by other people.

            I’m not saying my life hasn’t changed in positive ways. I’m sure it has. However, there are some parts of my life and experiences I’ve had I’m no longer able to share very well. I can experience them, but it is hard to take the time to share what they really mean to me.

            Except that I love Ron as I always have and even more. I thank the Lord for him.

Ch.44. Pat Asks Ron How He has been Affected by Her Lewy Body.

            After we discussed our last entry, Pat asked me for more details on how I have been affected by her having Lewy Body Disorder. There have been a multitude of changes, of course, some good and some bad. I think I’ll focus here upon my emotional and mental state rather than physical things like taking over household chores.

Anxiety.  My anxiety has certainly increased since Pat’s disease developed. I often feel a low grade but continuous sense of dread. What bad thing is going to happen next? Will Pat wake up this morning hallucinating? Will she feel scared and lonely, needing me to hold her and comfort her? Will Pat get angry with me about something she has misunderstood or about something that never happened? Will she get worse anytime soon, and if so how?

            I practice slow breathing, cognitive restructuring, going to support groups, etc. They help... a little.

Worrying. I’m not a pessimist by nature, but I do spend a lot of time thinking about worst case scenarios. What if Pat’s meds quit working? What if we go shopping and she gets lost? What if something happens to me so I can’t keep caregiving? It didn’t help that I needed a heart stent a few months ago. That reality has elevated my insecurity. It also doesn’t help that many of the problems presented by Lewy Body don’t have clear answers. When I worry, Lewy Body feels to me to be like a jig saw puzzle has been turned upside down with some of pieces missing.

            Pat is not much of a worrier. She sees adventure where I see danger. She anticipates best case scenarios, just my opposite. Climbing on rocks is safe, she’ll say. When I insist it is dangerous and she could fall and hurt herself (which she has), she just says that she will be careful but if she falls, she falls, and she’ll just pick herself up and keep going. I wish I could relax and let her climb and fall if need be, but I don’t. That’s when I begin to panic and worry “louder,” raising my voice and trying to make her get off the rocks. I really piss her off when I do that. I worry about that too.

            I guess you could say that worrying is the mental part of my overall anxiety. I worry more now than before Lewy Body entered our lives.

 

Pat’s comments on Pat Asks Ron How He has been Affected by Her Lewy Body.

            I sense that Ron is a lot more miserable now then he used to be. I do. But I am not any more crazy now than I ever have been. I’m not a crazy person. When I was young and I knew that the barn was dangerous because Aunt Ella and Uncle Roy told me it was, Uncle Roy started me out by laying me down in a little crack in the floor that had about half an inch of grain in it and he said I should never lie down in more than that because it was dangerous for my breathing. But both Ella and Roy after I reached a certain age trusted that I knew what they taught me and I would not do the things they considered that might be dangerous to me. I was very careful to follow that. I did not go where they told me not to go although I did go to some places they had not forbidden me to go. I was careful, however, that those were not dangerous places. The most dangerous thing I did when I was a child was to try to build an igloo of snow. When it crashed down on me my dog Buffy had to run and call Auntie Anna to come and dig me out of the snow. I never did that again nor did I even think about it. On the whole I make pretty good decisions about what is safe for me to do and what is not safe.

 

Ch. 45: What Ron Doesn’t Understand About Me.

            [This chapter is initiated by Pat with a response from Ron]

 Because I can’t drive I’ve lost the ability to find quiet places where I could go and find plants and animals – things in nature, special places that I could commune with and that is a very big loss. Sometimes these places feel holy to me and that is why I want to stop at them. My fantasy is that if I am driving with Ron and I find a beautiful place to stop he would not want to. He’d say (and he has said) “Why do you want to stop here? There’s no place to park.” And when I find those places he tends to think I’m being silly. I’m not being normal.  My response is mostly to stay in and around the house.

            It’s frustrating to me that when I see a place that has a particular feeling about it, and I want to explore that place I feel I cannot. I know it upsets Ron when I insist on stopping somewhere that feels right to me but he doesn’t understand. I have not figured out what to do about that and I have no way to find those places now without being able to drive. I wish sometimes that Ron was more of a wanderer and he could wander with me and he could smell and sense and feel what was there but he seems not to be able to. The main thing I hear is he thinks what I’m doing is silly and I hesitate to tell him that what I am doing is almost religious because I can’t imagine what he’d think then. I feel I have lost one of the most important parts of me or I am giving it up so he won’t be uncomfortable.

            I think that when I wander like this I discover things around me and about myself – things that give me a sense of worth.

[from Ch.44] I am more aware of who Ron is and how he structures his life and I understand some of my frustrations are because I don’t structure my life in the same way. Still, when I talk to him and when I share with him what is important to me he can understand some and not everything. I do love him very much.

 

Ron’s comments on What Ron Doesn’t Understand About Me.

            Pat’s essence has always included something I call her “wanderer.” Even today, as we drove in the countryside, she talked wistfully of us “getting lost a little” on our ride. The wanderer is her creative, nonlinear, spiritual self. I believe the wanderer is essential to her sense of being. It gives meaning to her life. I’ve often imagined that one of my jobs in our marriage is to provide the grounding that allows her to wander safely – to get lost in safe places, you could say.

            Wandering like this makes me anxious. For example, I can drive around not knowing exactly where we are for maybe half an hour but as I do so I feel my body tightening and my breathing getting faster. By then I want to stop the car, pull out my phone, go to “maps” and find out how to get home. This disappoints Pat who would like to keep exploring.

            Pat used to feed her wanderer without me, maybe even despite me. But now we are more glued together. She can’t drive away. I have tried to help her find some ways to honor that part of her but obviously she grieves her loss. And sometimes she resents me for limiting her freedom, which I admit I do.

            Something I can do is to consciously face my excessive fears and separate them from realistic concerns about Pat’s safety. I’m working on that.

 

 

Ch.46. Who Would Take Care of Pat If I Couldn’t?

            This concern has been gnawing at me ever since I received a heart stent on May 23, 2019, about five months ago. Lately I’ve been asking myself this question more and more frequently, even though I’m generally a healthy 75-year-old male. Apparently healthy, for sure, but… winter’s coming and I could slip on the ice; since I almost had a heart attack maybe I’m due for a stroke; my mother died of cancer in her forties and my Dad died from diabetes at 60 so when will my luck run out? I could die or become incapacitated in so many ways. What if these eventualities occur sooner rather than later? Then who would take care of Pat?

            I’m probably the one millionth caregiver/care partner who has worried like this. The people we love live precariously, as do we.

            We are fortunate to have all three children living close by. I’m certain each of them would immediately offer Pat a place to stay for as long as she needed. Indeed, all three own homes large enough to allow Pat a room of her own. They also own hearts large enough to willingly find a place in their families for their Mom. But how realistic is that plan? My kids are all wage earners. None of them could just quit their job and stay home all day with Pat like I do. Perhaps someone could be hired to come in several hours every day, hopefully someone who would take Pat places she wanted to go, listen to her stories and concerns, and be alert to her medical needs.

            I wonder if I’m being neurotic and narcissistic, acting as if I were irreplaceable, and that Pat simply could not survive without me. I hope so. Then it’s only my problem and not a real issue.

            Maybe a better question than who will “care for” Pat is who will “look after” her? That term feels better to me – I think it recognizes that Pat can mostly take care of herself but that there are some areas in which she would need help if I weren’t around. 

            I have found one action that helps. It’s giving thanks at the beginning and end of the day for still being here and being able to provide for Pat’s needs. Since I have little control over the future, I am better off concentrating on today’s safety issues rather than those of tomorrow.

 

Pat’s comments on Who Would Take Care of Pat If I Couldn’t?

I think I would be better able to take care of myself than Ron thinks. I have as long experience of the world as Ron does and I am prepared to address the issues of taking care of myself better. I may or may not even need another caretaker. I have been independent in many ways and I have by now had considerable experience with Lewy Body issues. I am not ashamed because I am a little different. I often think of what I either might do or could do if Ron were not doing so much for me. I would need to welcome the new challenges and I can do that.

            I would be happy for help from the children, but I don’t feel I’m dependent for that on them either.

            There are times when I feel Ron underestimates me and I am also very capable of asking for help when I need it. One change I would be happy to see sooner is that Ron and I could start walking around the neighborhood together because we are generally not doing that, and he drives and I can’t. I would learn more about where I live, what to welcome and what to avoid, and what Ron might worry about most. 

 

Ch.47. Mornings Can be Unpredictable.

            I sense the unpredictability caused by Lewy Body disruptions frequently in

our mornings together.   

            Morning routines have always been important to me. I particularly appreciate the pleasant patterns we’ve developed over the years. I’d wake up first, let the cat and the dogs out, go feed the horse, return to bed and read a novel, drink coffee. Pat would gradually awaken, I’d bring her coffee, then I’d make a light breakfast (usually yogurt and a slice of cinnamon toast) which Pat and I would share with our Chow Chow Franklin, and finally we’d shower together and dress for the day.

            Lewy body dementia has one outstanding characteristic, though, namely fluctuations. You just cannot expect routines to be followed consistently. So now our mornings have become less predictable. Perhaps Pat will gradually awaken, but she might not have the energy to do so until later in the morning.  Maybe Pat will want breakfast, but perhaps she will prefer to wait until noon to eat. (Diminished appetite and weight loss are common aspects of Lewy Body Disorder.)

            Let me add here that I am responsible for some changes in our morning routine as well, and I think these changes are also partly the effects that Lewy Body has had on our lives. I often wake up at night worrying and sometimes that makes me more irritable in the mornings.  I do take a minor anti-anxiety agent every day and lately I’ve tried to make sure I take it as soon as I awaken.

           

Pat’s comments on Mornings Can be Unpredictable.

 

I think these morning changes bother Ron more than they do me. It has not once seemed to me that I should be taking this pill for him.

 

 

Ch.48. Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday.

            October, 2019.

            I had been warned about fainting episodes in my care partners support group. I was told that people with Lewy Body sometimes faint in a rather dramatic way. They just suddenly collapse. “You’ll think they had a stroke and died,” they said, “but then a couple minutes later they will open their eyes and quickly recover.” So, all you need to do is wait, as against calling for help.

            Pat and I were showering together. She mentioned she wasn’t feeling too well. And then a minute later she fell to the floor without a sound, hitting the shower walls but fortunately nothing hard. I knelt by her, terrified she had died. Her eyes were open but not focused. I couldn’t detect any breathing. And, yes, I remembered what I had been told; I knew Pat might be having an episode of what’s called syncope and that she might be ok. But I sure wasn’t going to sit around to see what came next. I ran to the phone and called 911, told them our address and what had happened. I was only gone a minute; when I returned, Pat had regained consciousness and eye focus.

            The emergency medical technicians got to our home in about 5 minutes, followed by an ambulance crew. They helped Pat out of the shower and to a chair in our living room, with our two loyal dogs sitting at her feet to gently comfort and protect her. All Pat’s vital signs were fine. She sent the ambulance people away.

            I don’t know about Pat, but two days later as I write I am still shaken to the core.

            That was Wednesday. Thursday was the day Pat’s Stand in the Light memory choir was scheduled to have a two-hour rehearsal in the morning and then give a major performance that evening. Pat did well at both. The choir sang beautifully in front of an audience of several hundred truly impressed listeners. Two of our children and their families attended and brought Pat flowers. But she looked as physically exhausted as I felt emotionally exhausted at the social function after the choir.

            Today we took a long drive in the country, discovering a few dirt roads we’ve missed in the past. We journaled. Mostly we rested.

            One traumatic episode is over, as is one wonderfully rewarding event.

This is our Lewy Body world.

 

 

Pat’s comments on Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday.

            On Wednesday I was terribly embarrassed being dragged out of the shower almost naked. The attendants on Wednesday did their job well and since my dogs were surrounding me – sweetly, it might be noted – I was proud of both of them, the dogs and the team.

On Thursday I was totally astounded at the size of the crowd, how good the performance was, and at seeing two of my children seated in front of me both holding flowers.

            The banquet following the choir performance was wonderful and topped off by a few distant relatives whom I had not seen for years right there beside me. What could have been better? I got to meet people my mother had introduced me to when I was young. Hurrah!

 

Ch.49 Two Rons

            “Ron, was that Lewy Body doing this to me?” Pat asked this question about 8 p.m. yesterday; it was a very good question and the answer was “Yes, that was Lewy Body.”

            All day Pat had insisted there were two Rons in her life, the one in front of her and another Ron who was very similar but a little different in ways she couldn’t quite describe (my guess is that maybe he was a tad nicer or maybe a better listener). She didn’t claim I was an imposter so this wasn’t a case of Capgras Syndrome – that would be really scary. She also said the two Rons switched places from time to time.

            We had an appointment that day with Gina, our financial advisor. Pat mentioned the two Rons to Gina who looked a little surprised but smiled. Gina knows Pat has Lewy Body and so was somewhat prepared for this conversation. Also, Gina likes Pat a lot and values Pat’s creativity. I was grateful we could carry on our meeting without disruption or discomfort.

            This wasn’t the first time Pat had insisted there are two Rons in her life. At first, I was scared, dismayed, even a little angry. “Hey, there’s only one of me,” I tried to insist. That didn’t work. Pat knew there were two Rons and that was that. By now I’m getting more comfortable with the idea. It helps that I’m an identical twin. In my youth Don and I didn’t have first names; we were always “the twins” so having a double seems natural.

            However, this was the first time both Rons were present for an entire day. Only that evening did Pat ask the question above; it was as if she was gradually coming out of a mental fog and she could finally see reality. She reassured me (and, I think, herself) that there certainly was only one Ron and he was right there with her in the room.

So much now for the two Rons.  However, there is a bigger, scarier question implied in this scenario: How quickly is Pat’s Lewy Body dementia progressing? It can’t be a good sign that her hallucinations are lasting longer than before. Also, Pat’s been saying that she feels mixed up in her head more than previously. On the other hand, I’m not consistently seeing other problematic indicators and I do see some positive developments. Pat has been doing more around the house, singing a lot, drawing and sewing, preparing for Christmas appropriately, etc.

           Pat’s Lewy Body symptoms unpredictably fluctuate from almost nonexistent to dominating our lives, sometimes in the same day.

 

Pat’s comments on Two Rons

            When I finally asked you “Ron, have you been here every night with me?” and you said “yes” then I knew that you are Ron and there is no other Ron even if you act differently.

            When there are two Rons I can tell the difference because one listens to me more carefully and is polite and sometimes he says “Yes, honey, it’s been me the whole time.”

 

Ch.50 Lewy Body Affects Pat’s Sense of Time

            We were going to meet friends at 1 pm to go to a movie. But before that I had to take a load of recyclables to our town’s recycling center. I left at 10:00 a.m., believing I had told Pat clearly that I’d be back in 25 minutes and we’d go to the movie in three hours. She had said she understood, but when I came home Pat was outside waiting in the cold for me to return so we could go right away. This isn’t the first time we’ve encountered this misunderstanding. Nor is it something only happening with Pat. At the last couples support group, we attended two other couples talked about the same issue. It seems evident that Lewy Body affects people’s sense of time.

            There seem to be two aspects to this problem. First, sometimes I may just not be clear enough in what I say, or I don’t make sure Pat really has taken in my message. This is most likely to occur when Pat is sleepy or tired. Secondly, Pat has become less patient over time. Waiting three hours to drive to the theater apparently seems way too long for her; Pat wants to get going immediately.

            I’m a “let’s get there right on time, neither too early nor too late” person. I used to get frustrated with Pat because she wouldn’t be ready on time and we’d get to our destination late. Now it’s more the opposite issue; Pat’s the one eager to get going and I’m holding her back.

            The consensus in our support group was that we care-partners needed to be more flexible. So what if we get somewhere 15 minutes early? Relax. No sense arguing with the partners we love just to prove we know how to read a clock. However, three hours is different. All I can think of to do in this situation is to explain again and try to fill the time with some activity such as having a meal. I do feel badly when I see Pat becoming frustrated and antsy.

Lewy Body creates many situations like this in which there are no absolute solutions, just minute to minute accommodations.

 

Pat’s comments on Lewy Body Affects Pat’s Sense of Time.

People react to different situations slightly differently. Ron says I’ve been anxious about a trip we’re going to take in March (two months from now) but I’m not aware of that. This time issue is not a big deal to me. If it’s a big deal to Ron he needs to tell me so.

 

Ch. 51 Our Children Want Us to Move to the City

            I’m writing this the day after Christmas, 2019. As my son in law Mark was helping me load up presents yesterday at the end of the afternoon, he took me aside. Mark mentioned that all our children and their spouses thought we should sell our home in the country and move into town. They think it is too dangerous for Pat to be that far from help if needed and too strenuous on me maintaining a large home and caring for all our animals including a horse. We would also be closer to our two children who live in Eau Claire and so they could more easily give Pat more family time and provide me with rest periods when needed. Lakota could be stabled, Mark said, and family members could care for our two dogs and a cat if necessary. Meanwhile, we could find a condominium or apartment that would be safer, easy to maintain, and better placed for the family to provide help.

            Are they kidding? Move out of our home? Into the city? When I am still perfectly healthy and easily able to haul 50-pound sacks of dog food, horse feed, and bird seed? When Pat is still functioning well and has become very careful about not falling? When we have built in a stair climber and walk in shower to lessen risks and make life more manageable? Give all this up for what, a few rooms in a crowded city? My idea of when to move has been that we could stay as long as my body holds out and Pat’s mind stays relatively clear. Hopefully, another five years, until we’re eighty years old.

            That was my initial emotional reaction and I still feel that way. But at a more cognitive level I’m trying to consider my family’s concerns more thoughtfully.

First, would Pat really be safer in the city? Yes, probably, although when she fell recently the emt’s were at our home within five minutes. They all live nearby. Still, if Pat needed to get to a hospital it would take longer here than in town. Also, there are lots of things outside that Pat might trip over and we live on a hill, so we have to negotiate a lot of steps and slopes on a daily basis.

Secondly, am I reaching a point where I’m becoming overwhelmed or exhausted by my responsibilities? I would say the answer is “no,” but I suppose I could be fooling myself. I need to get some outside information – my children’s observations – to help me on this point.

Thirdly, would Pat receive more family time, and could I more easily take time-outs in the city? Yes, no doubt this is true.

It’s obvious, then, on the logical side, that we should seriously consider moving. But emotionally I know I’m not ready to act on that logic. Just like most “old folks,” I intend to cling to my home as long as I can and probably a little past the time I should let go of it.

 

Pat’s comments on Our Children Want Us to Move to the City.

            My first statement is about the children taking care of our animals. Who would take care of them? Would there be a family member helping them get in and out of the house as they needed?

            I do need to watch out for things I need to step over and I need to look at our steps and slopes that I use on a daily basis.

            My overall feeling is that when things get really cumbersome in our current location then we should look for another place that will fill our needs (not necessarily the place our children would choose). Find me a decent size house and I’ll be fine.

 

Ch. 52 Our Two Truths Are Like Oil and Water

Round One: Pat tells me that last night she was surrounded by several people who accused her of doing bad things, causing her to feel shame even though she was innocent. I saw how bad she felt and decided to suggest she had a bad dream, something that happens frequently with people who have Lewy Body because that disease affects REM sleep patterns. I knew it was risky, but I felt sad she was in so much distress about an incident I was certain never happened.

Pat became angry. She insisted she was in reality and I was accusing her of being crazy. I felt trapped. If I kept saying she had a dream I’d just feed her anger; if I backed off and agreed with her I’d be lying and two-faced. The more we talked the worse it got, until Pat went to take a nap.

Round two: Pat awakened, and we held each other for a long time. However, she insisted there were two Ron’s in her life, one being myself and one almost the same but different and temporarily absent. I quietly told her there was only one Ron, namely myself, but she didn’t believe me. Then she started giving me tests to see if I really were her husband: How did we meet; how old is she; where were we married? I answered the questions and kept stating I was the only Ron, even though I knew she did not and would not believe me. Her response was to ask if I knew where the other Ron was staying tonight.

Our truths are like oil and water; they don’t mix. Maybe, like oil and water, we should just let them stay separate and not try to mix them together again.

Pat’s comments on Our Two Truths Are Like Oil and Water:

             I remember one night we were riding in our car and I was talking to the other Ron. I asked where Ron was right now. I felt I had lost him and that was a terrible loss to me. I wanted to find my way back to him. I asked you (Ron) if you’d been sleeping with me every night in our bed and you said yes. That settled me down because then I knew there weren’t two Rons. You were the same Ron.

Ch.53 Slow Motion Panic Attack

            You already know, if you’ve been reading this journal, that I (Ron) am a worrier. I tend to think much more about what might go wrong in any given situation than about what could go right. But lately my worries have carried over into bodily breakdown symptoms. Specifically, I’ve just been given a prescription for medicine designed to head off a diagnosis of irritable bowel syndrome. This is astonishing to me because I have always considered my digestive system to be one of my best friends, but now sometimes it feels more like a competitor wrestling with me for control over my body. But things like this happen, I guess, when you feel anxious all day long.

            Maybe my rebellious digestive system is my friend, after all, as it tries to tell me something I haven’t wanted to hear, namely that my worry has reached an untenable level. I now sense that each of my individual fears has gradually mingled with all its companions to create a slow-motion panic attack.

            My physical problems aren’t the only consequence of excessive anxiety. I’ve noticed that my worry credibility ranking has gone way down with Pat. She is more likely than before to dismiss my concerns as the somewhat hysterical mutterings of a constantly alarmed person. Call this the “Sky is Falling” syndrome. If I could quit telling her to be careful ten times a day maybe she would agree to be more careful in a few relatively serious situations.

            I don’t know when or why I began worrying excessively but it’s been ongoing for at least two months. However, my anxiety did seem to peak a few days ago just before I discussed the matter with Pat and my brother Don. Since then I feel more normal; I no longer wake up scared in the middle of the night. In addition to talking with my family I have been practicing relaxation through breathing exercises and, from a cognitive perspective, I have concentrated on focusing upon what is going well this minute as against what might go badly in the future. My hope is that I will be able to discontinue my digestive medicines soon. More than that, I hope to restore my worry creds with Pat and, even more than that, to feel safe in the world again.

Pat’s comments on Slow Moving Panic Attack.

            I think Ron has to draw a clear line on his level of anxiety and panic and when he begins to feel more and more worried, he needs to ask himself what to do to feel less worried. I have to do that myself because I can get worried and when I become too worried life is no fun. I want to encourage Ron more and more if he has to take time for himself to do that but not to forget the rest of us around here who love him and want him to feel good, including the dog and the cat.

 

 

 

Ch. 54 Ron Joins the Stand in the Light Memory Choir

            We’ve written before about how living with Lewy Body has provided opportunities for new experiences. Last fall Pat joined the Stand in the Light Choir, whose membership includes people with dementia, their care partners, and volunteers. The volunteers help those with dementia stay organized, but my observation is that mostly they come to sing – and everyone in the choir seems to have a good voice. This choir is directed by Cathy Reitz, a singer herself who has the incredible ability to insist on quality while ensuring that people have a good time.

            All fall I watched, thinking my most important job was to offer Pat support in this new endeavor. Pat steadily regained her voice (she had been a soloist in high school and sung with symphonic orchestras) and her confidence while I happily played the role of cheerleader. Meanwhile, Cathy suggested I too join the choir. I deferred, saying I wanted to stay in my cheerleader role until Pat didn’t need that anymore. Fact is, I was terrified of joining the choir. I have a mediocre voice, totally untrained, and I have never sung in front of anyone, not even my family. On the other hand, I could see how much fun the choir members were having, and I discovered that several volunteers had never sung before and had no musical training.

            I decided to join. But I was still scared. So, Pat took me to a music store where she located a beginner’s music book. Who knew, for instance, that singers naturally have two voices, one emanating from their chest and one from their face and throat? That little piece of information cleared up why I often started low and ended high, with a hearable crack in between. I’ve attended three rehearsals now and I’ve been practicing between rehearsals. I’m having fun and learning a great deal in an entirely new domain (which, as a bonus, is supposed to help a person maintain or improve brain function as they age.)

            We’ve now reversed roles. Pat has become my cheerleader, helping me gain skill and confidence.

            Lewy Body is still a tough disease. No choir can change that reality. However, Pat’s courage in facing her dementia while finding ways to enjoy life has widened both of our experiences.

 

Pat’s comments on Ron Joins the Stand in the Light Choir:

            I’ve been delighted with Ron joining the Stand in the Light choir. He has by his own research already found many things his voice can do and I am delighted hearing him sing. It would be correct to say that I am now his cheerleader – along with all the kids in our family – the Bergers, Keiths, and Potter-Efrons.

 

 

Ch 55 Many Small Frustrations

            Pat has become frustrated with me several times in the last few days. Sometimes she wants me to do something such as checking road conditions in the midst of a snow storm with the hope we’ll be able to sneak in a trip to town; at other times she cannot understand something I’ve done like crossing out an activity on our calendar because I had put that entry in the wrong place. Sometimes she raises her voice a little; at other times she says something under her breath. I tend to take offense after receiving a few of these reactions. I feel that she is criticizing me when I have done nothing wrong.

            Today, though, I’ve tried to think about these events from the perspective of someone with Lewy Body. I think I can see how I could become frustrated about the many small things that I used to be able to do myself or understand that have now become difficult. For instance, now I can check our state’s road conditions on the computer. But what if my Lewy Body causes me to become confused when I try to use it? That’s frustrating enough but then I must ask someone else to go on the computer for me if I still want information. That means I must depend on you to go on the computer and if you don’t feel like doing it right at this time, I might easily become frustrated.

            The calendar is another source of frustration. What if I could see a whole month laid out in front of me but I couldn’t quite sort out what was happening this week from last week or next week’s activities? I’d need to ask for your help even though I know I should be able to figure things out myself. I think I’d feel embarrassed about having to ask and probably quick to become a little defensive.

            I think the core problem, then, is this: “I used to be able to do these things by myself and I hate having to ask for help now.” So maybe I could not react as strongly when Pat shows her frustration. It’s not me, it’s Lewy Body, that Pat is frustrated with.

Pat’s comments on “Many Small Frustrations.” I’m sure Ron has many small frustrations with me because I don’t track as well as I used to. I might see something and think it’s settled and the next time I see it I want to settle it all over again. When I can’t get a response that is helpful to me I can get grouchy and defensive. I know I don’t know as much as Ron about the computer (or the tv for that matter) but I don’t like having to ask for help for something a second or third time. Then I get very frustrated with myself, not just Ron. I try often to say I’m sorry, too.

            It would be really nice if people could understand that people with Lewy Body are doing the best they can .

 

Ch.56 Ending on a Positive Note.

            Pat and I began this dialogue just over a year ago. Many of these last 365-plus days went well; a few have gone very badly; most days have been a mixture of good and bad. The same can be said of the presence of Lewy Body symptoms; sometimes they are virtually absent; occasionally they cause great confusion and alarm; mostly they are there moderately affecting our daily activities.

            Yesterday, though, was a wonderful day. Pat and I baked and frosted a cake together. We watched an excellent Broadway performance of The King and I on PBS. We read and thoroughly discussed a dialogue entry before entering it onto the Lewy Body Dialogue blog site we created recently. We even took a long early winter drive through the beautiful hills around our western Wisconsin home. We made love.

            We had set a goal of creating fifty chapters of our dialogue before exploring the possibility of publishing them as a book. We’ve now surpassed that goal. In the meantime, we created the blog I mentioned above; in it we are publishing one chapter a week – as of this writing we are only at Chapter 3 on noise. Returning to these early chapter makes me grateful that we’ve gone over a year without Pat becoming significantly more affected by her disease. It also helps me realize that we are still dealing with those early issues, including my tendency to overcontrol in the name of protecting Pat.

            We plan to keep writing our dialogue. It’s been too good for us to end it. I’ve discovered repeatedly that Pat has excellent thoughts about her situation, our relationship, and Lewy Body Dementia as a part of our lives. I think my writing has helped Pat understand better what it feels like to be her care partner.

            I want to recommend shared journaling to those of you who as a couple are sharing the Lewy Body journey. Please give it a try. If you do, you may find it to be a rewarding and enlightening experience.

 

Pat’s comments on Ending on a Positive Note

            A rewarding and enlightening experience, yes, as long as we talked about it first.

            Writing the journal has helped me put my life together and it has helped me understand that some things are wonderful and a little wrenching at the same time.      


                                                     LATER STAGE: CHAPTERS 57-155

Ch.57 Pat and Ron Confront the Corona Virus

          I am writing in early March 2020, about one month after the Corona virus emerged in China and just as it has struck in the U.S., already killing several older people in Washington state and one person in California.

            Here’s our situation: we are scheduled to fly to southern California, where I am to be the keynote speaker at a social work conference in L.A.; then we plan to drive to Palo Alto to visit my brother Brad (who teaches at Stanford) and then fly home from San Francisco. The trip will last 11 days – if we choose to go. Pat and I have been discussing the matter with each other, friends, and family. But there are so many unknowns (how fast will the virus spread, how dangerous is it, how vulnerable are each of us, etc.) that it is impossible to make a reasoned decision. All I know for certain is that my anxiety level is rising every day.

            Reasons to go: 1) I have a contractual obligation to make a presentation; 2) the odds of getting the virus will be small even if there is a significant outbreak; 3) Pat and I haven’t seen my brother in two years – between advancing age, Lewy Body, and physical health problems who knows when or if we will have another opportunity?

            Reasons to cancel the trip: 1) We are old enough to be in the most vulnerable group so that even though the odds would be low to get the flu it could certainly be fatal if we did; 2) we would mostly be in public places for the entire 11 days of the trip; 3) If we did become infected we might very well bring the disease back to our families and community before we showed any symptoms.

            What would you decide in this situation?

Two weeks before departure time we decided to cancel the trip. Why? Not because of any rational thought process. As mentioned above, there wasn’t enough information available to do that. It was because we found ourselves becoming more anxious about going each day as the travel day approached. Eventually I recognized that I would be anxious for another month if we made the trip as planned. I think Pat felt the same way. Basically, we were both becoming nervous wrecks.

Also, I noticed that Pat’s Lewy Body symptoms worsened as she became more anxious. Pat asked about our plans repeatedly but had trouble keeping them in mind. If “Stay calm and keep things simple” is a formula for lessening Lewy Body traits, then this would be trip was having exactly the opposite effect.

I dreaded telling the convention organizers my decision, of course. I don’t remember ever backing out of an obligation like this. But the director I talked with was exceptionally kind. She understood our situation and even told me she would have done the same thing.

It took two days before my body got the message and I could relax again. I think Pat needed about that much time for her thoughts to become clear.

I do believe I’ve learned or relearned a significant moral lesson from this incident: as important as it is to honor one’s contracts, it’s more important to protect the people you love (including yourself).

 

Pat’s comments on Confronting the Corona Virus: I was feeling good about going on the trip. However, I knew that Ron would be very nervous the whole time and that’s harder for me to cope with. I feel good about our final decision to not go because I was also worried about bringing back symptoms that would affect my family here. I don’t want to bring the virus to Ron’s brother Brad and Donna either.

          If I had decided to go, I wanted to be with Ron; however, I was nervous about it and when Ron decided to pull out of that trip, I felt a lot more peaceful.

          The problem is whether I went with Ron or not I might lose him, and I just can’t risk doing that. It would destabilize me for a long time.

 

ADDED NOTE: If we had gone, we would have ended up “sheltering in place” at my brother’s home and then flying back from San Francisco just as thousands of potentially infected Americans were returning from Asia and Europe. We made a good choice indeed.

                                        Later Stage Chapters (Lewy Body More):  Ch 58-158

 

Ch.58 Pat Calls Me “Dad” and that Feels OK

March 2020.

          Pat has been calling me “dad” fairly often over the last few weeks. She does that most frequently, I believe, when she is feeling scared and unsafe. Since we’re in the midst of the Corona Virus pandemic right now, it’s understandable that she gets anxious. So do I, for that matter.

          At first, I was uncomfortable with “dad.” I was afraid Pat was becoming more symptomatic and that she thought I was her real father, Stan, who died many years ago. But when I asked, Pat assured me she knew the difference. I wasn’t Stan in her mind, but I was a father figure sometimes.

          I do regularly play the role of a father in my relationship with Pat. I comfort her when Pat feels anxious; I make our meals; I handle Pat’s medications; I try to explain what is happening around us when she becomes confused; and, most important currently, I have to take major responsibility to ensure our safety by doing things such as ordering paper products and groceries online as we hunker down to wait out the state of Wisconsin’s  “stay in your home and keep away from others” mandate. Considering all these activities I guess Pat calling me her dad isn’t a huge stretch.

          I have tried to “correct” Pat from time to time, always when I felt uncomfortable with being her father figure. I wanted Ron to be her husband and equal partner much more than to be her dad. I still want that. But when I’ve tried to intervene, nothing good happened, only increased tension and useless arguments.

          But then last week something amazing occurred over a space of a few days. I gradually began to feel at first accepting and then actually good when Pat said “dad” to me. I no longer felt defensive. My heart rate quit rising when I heard that label. I had no need anymore to try to convince Pat that she was mistaken. The key change happened when I realized I could be both her husband and her dad. After all, the two roles overlap a lot anyhow. I also recognized that sometimes Pat acts as my “mom,” especially when I become overwhelmed with anxiety, an all too common occurrence. That makes Pat both my wife and mother.

          What do you think Sigmund Freud would say about this conversation?

 

Pat’s comments on Pat Calls Me “Dad” and that Feels OK.

          I think Sigmund Freud would say this is a pretty normal marriage.

          I don’t think I call Ron “dad” mostly when I’m feeling scared and unsafe. I do it when he’s acting like a dad, like telling me what to do and how to do it. Sometimes I call Ron “dad” just because it’s a nice thing to do even though I know he’s my husband, not my father. It’s like being mom and dad. Ron can call me “mom” sometimes.

 

Ch.59  It’s a Good Thing We are Both Introverts

          As of today (March 23, 2020) the state of Wisconsin is officially on “Safer at Home” status, which is a euphemism for “Shelter in Place,” which itself is a euphemism for “Don’t Leave Home or Else…” All because of the Covid-19 Corona virus that is threatening our lives while attacking the foundations of the American capitalist/consumer-based economy. Hundreds of thousands of people are out of work; shops are closed; the shelves of many stores have been stripped of paper products and groceries as everyone hunkers down for an unknown length of time.

          Here we are, at home –just us with our collie Levi and our cat Blackie. We did sneak out for an hour today to conduct “essential business,” namely a trip to two banks to transfer funds from the first to the second. We headed to the drive through windows at each stop so as to minimize contact; then we drove almost straight home (with a slight detour to see some of our favorite woods) and I immediately washed my hands to decontaminate myself just in case the friendly bank tellers were actually unknowingly infected missionaries of doom.

          This is a lonely time but fortunately Pat and I have been genetically prepared for moments like this. We are introverts. All our lives at parties we’ve watched with stunned amazement as our extroverted family members and friends tromp from one person or group to another and another, apparently immensely enjoying their nomadic journey, while we huddled in a corner hoping the birthday party or family gathering or conference “sharing time” would soon get over. It’s not that we envied the extroverts; we simply couldn’t comprehend their motivation. True joy, we figured, comes from reading together in bed, not from talking at you-can-smell-the-other- person’s-breath distances.

          I don’t know how my extroverted associates will manage “safer at home.” Poorly, I’m guessing. But perhaps some of them will discover their inner introvert during this enforced separation period.

          Meanwhile, Pat and I are getting along great and arguing less than ever. I realize now that many of our tense times occur when we are scheduled to be with others: doctor’s appointments, visits with friends, family events. One of us or the other doesn’t want to go on these activities in the first place or to stay very long once there. Not always, of course, but sometimes we become irritated before arriving, maybe sulk a little through the event, and then snipe at each other on the way home.

          For Pat, less tension correlates with fewer Lewy Body symptoms. She seems a little happier now, although she does wake up some mornings thinking she should be doing stuff like taking care of others that would demand our leaving the house. She appears to be less depressed also, even though these cloud-filled days at the end of winter often trigger some signs of seasonal depressive disorder.

          I do see a “moral” emerging from this essay. We need to honor our introvert more in the future, when this crisis is over. Don’t get caught up in too many events and activities; do leave extra time and space for couple’s time and personal solitude.

 

Pat’s comments on It’s a Good Thing We are Both Introverts:

I’m not as certain that it’s a good thing that we are both introverts.

My experience is more like—even introverts can differ about how they see and feel life events. I thoroughly enjoy Ron’s differences from me, although sometimes I wonder if he is not more morose than I. I like that we can have fun together, although I feel sometimes we forget to laugh and that’s also something good about us. That we can find the places where we laugh together. Overall, I think we do well together.

 

 

Ch.60   Working Together

March 2020

          I’m getting our blog ready to publish as a book. It’s complicated. Today I need to do something a little tricky: is there a perfect match between the table of contents, the alphabetical list of chapters, and the text headings?  Do the chapter numbers match? Are the titles identical in all three places?

Maybe Pat could help. She agrees and we head to the computer, where I hand her the alphabetical list. I call out the name of the first chapter and compare it with the text while Pat is supposed to confirm that the alphabetical list says the same thing.

          However, I soon realize that Pat is having trouble finding the right place. Each time I tell her a title (Example: “Good Days”) she has to search through all three printed pages of titles looking for the correct one. My God, I think, has she forgotten the alphabet? Then I remember that sequencing is especially difficult for people with Lewy Body. I try giving Pat one hint each time (Example: “Good Days begins with the letter G, Honey”). That’s all it takes. Pat immediately goes to the right place in the list each time. By the finish she is ahead of me and able to give me the correct information before I ask for it and she has no need for a hint.

          We wrote in a previous chapter that we are still a team. I feel the same today as when we wrote that essay last year: grateful, relieved, and loving. We also wrote a chapter about the two of us being care partners rather than me being the caregiver and Pat the care receiver. Here my feelings are more celebratory: I want to yell “YES,” we are indeed care partners and that is all that matters.    

 

Pat’s comments on Working Together:

          Sometimes we have to talk together about what we are writing about. Then the results are usually good. We’re often in agreement in various ways. It’s a usual thing and is working fine. I seldom feel misunderstood. This [blog] is different because each example starts out with me not understanding but then going to understanding.

 

 

Ch.61   Short- and Long-Term Memory Loss

April 2020

          I asked Pat what she thought of the movie we’d seen together the day before. “What movie?” she asked. It took several prompts from me – the movie’s name, who was in it, the plot – before she recalled it, and even then, her memory was vague. Unfortunately, this kind of episode has become more frequent over the last couple months, enough so that Pat told me she has become concerned about her short-term memory. Fortunately, her long-term memory is mostly intact with the exception that she sometimes mixes together events that were actually separated in time (but then, so do I, I’m sure).

          Yesterday my caregiver support group had a virtual Zoom meeting (We are still in Covid-19 virus shelter-in-place-land here in Wisconsin). I asked the other participants about memory loss with their spouses or parents who have Lewy Body. The results were interesting and as usual described the great variances among people with that diagnosis. One person reported no memory loss; two said their loved one had short term issues; one member stated that her husband only had long-term memory loss; two people reported that their Lewy Body partner had both short- and long-term memory problems. Let me note that memory loss is usually listed in the professional literature as possible but not a defining characteristic of Lewy Body while of course memory loss is the defining sign of Alzheimer’s Disease. Also, you may know already that short-and long-term memories are stored in separate places in the brain so they can be affected differently by injuries or disease.

          I have observed that occasionally Pat asks a question about a concern such as when we are going driving today that I had answered only a little while before. I don’t know if she didn’t really hear my initial response or if she had heard it but couldn’t retain the information. But she remembers far better than does one of our good friends who suffers from Alzheimer’s Disease and who might ask the same question two or three times during a one-hour discussion. My hope, of course, is that Pat will be able to retain most of her memory capacity, both short- and long-term, even with Lewy Body.

 

Pat’s comments about Short- and long-Term Memory Loss:

          Yeah, I do think I’ll be able to retain my memories. Sometimes I do have memory loss and sometimes I don’t. I think my short-term memory losses are becoming fewer because I’m more aware of it. I just think more and they come back to me.

 

Ch.62   One Year Anniversary of Ron’s Heart Stent Operation

          Today is May 23, 2020, exactly one year after I received my unexpected heart stent operation. I began today by sending my children the following e-mail:

Thank you, Jenny for coming right away to the hospital to stay with Pat while I was taken to the operating room. Thank you, Joshua, for staying with Pat that night when she was so scared. Thank you, Cindy, for staying at the hospital overnight with me and getting help when I was in pain. Today is a good day to be alive.

          My greatest concern that day as I was wheeled into the operating room was what would happen to Pat if I died? Who would take care of her? My greatest concern after the successful operation was almost exactly the identical thought: Who would take care of Pat if I were to die soon? My greatest concern one year later is still the same. This is true even though I know (in my head but not my heart) that Pat can still mostly take care of herself and that our three children would band together to nurture her and meet her needs.

It’s not that I believe I am indispensable; it’s just that we have developed so many patterns basic to our mutual survival: yogurt and toast in the morning; early morning medications; 1-2 hour country drives almost every day for spiritual sustenance; grilled cheese sandwiches for lunch; Pat’s evening insulin shot that I administer, etc. I cannot envision what Pat’s life would be like if I weren’t around to share all these routines.

Obviously, the solution is to stay alive. I’m doing all I can to do exactly that. I exercise regularly. I eat reasonably carefully. Since I’m writing in Covid-19 time, staying home and letting our children shop for us is also part of my and our survival plan.

          Still, I worry. What if…  Who would…?

Pat’s Comments on One Year Anniversary of Ron’s Heart Stent Operation.

          I am so grateful you are alive. What I’m aware of is that you have become more kind since the operation.

I could become more responsible if you would let me. I love you and I would like to take as good care of you as you do of me but it is awfully hard to get out of the other role of being the one being taken care of. I would like to know when and how I could take better care of you, but I don’t think you would tell me.

 

Ch. 63   Care Partner Goals: Safety, Pleasure, Joy

          Neuroscientists write that the best thing we can do for a newborn child is to offer that child safety in the forms of parental reliability, bonding, emotional comfort, and nurturance. Once a deep sense of personal safety is installed, that child and eventually adult will have a heightened capacity to experience pleasure and joy. Here I define “pleasure” as the experience of positive but ephemeral moments such as a tasty meal, casual sex, watching a movie (all without being distracted by fear or insecurity). I define “joy” as something deeper than pleasure, a more spiritual experience that fills someone with a sense of greater meaning. You might feel joy at a church service, walking through nature, or perhaps while making love.

          Lately, I’ve begun thinking about what it means to be Pat’s care partner. I believe that being a good care partner means that I should help Pat gather all three experiences I mentioned above: safety, pleasure, and joy. (She, of course, helps me experience those states.)

          Let’s start with safety. My perception is that Lewy Body has eroded Pat’s sense of safety. She often has scary dreams and wakes up certain that something has gone wrong and bad results will follow. During daytime Pat is less able to understand news reports and cannot as easily follow conversations as once she could. That frequently means she feels confused. I also have noticed that Lewy Body has made Pat less trusting of others, even friends and long-time associates. Her first response to my saying someone has asked us to call is more likely to be “What do they want?” than “Yes, that will be nice.” Pat does trust our family members, though, and that is good.

          The question, then, is how can I help Pat feel a little safer? What seldom works is to tell her she is hallucinating or imagining problems although sometimes she does accept a reality check such as “No, Cindy isn’t here, she’s at her home in Rochester.” Physical touch and holding help; just telling Pat that we are safe right now sometimes allows her to breathe easier. Recently, we’ve begun whole family Zoom sessions every Sunday and that too seems to help Pat feel safe and connected. And, as my first mentor told me, “Ron, it doesn’t help your client if you panic when she is panicking.” In other words, staying calm and feeling safe myself is better than becoming agitated or defensive.

          Now to pleasure. Pat often feels poorly, partly because her immune system has been compromised by Lewy Body. For example, she suffers from skin breakouts and digestive problems. I think Lewy Body also tends to exacerbate Pat’s depressive affect, particularly when the sun is hidden behind clouds during winter and during our Spring rainy season.

          I love cooking and baking foods Pat really likes. Blackcap pies; medium rare cheeseburgers; cookies; sirloin tip steaks. Good food is a wonderful source of pure, unadulterated pleasure. I also try to find entertaining shows we can watch (particularly important during the present Covid-19 shutdown) and jigsaw puzzles we can work on together. Pat likes to read mysteries, another source of pleasure, but lately she’s found plenty of those scattered throughout our house and so she hasn’t needed my help. 

          Joy. I’m sure you know by now that Pat and I take 1-2 hour country drives almost every day. Sometimes, especially when we reach the top of a forested hillside, I’ll call attention to a rocky formation or a cluster of birches and I’ll say they are pretty. “They’re beautiful,” Pat replies, and I sense that she feels a deep connection with nature, a spiritual union. I hear spirituality in her voice and feel it in Pat’s touch during those moments.

Wonderfully, especially caring physical intimacy sometimes feels amazingly significant for both of us, a “super bond” that simultaneously creates safety, pleasure and joy.

          Safety, pleasure, joy. When I can help Pat receive these gifts, I feel gifted in return.

 

Pat’s comments on Care Partner Goals: Safety, Pleasure, Joy.

          I feel that Ron’s last sentence goes both ways. If Ron sees me reading or busy or doing something on my own he’s usually happier. When I don’t know what to do he gets confused, but I don’t know what to do all the time. I find that if I can keep myself busy doing the things I usually do that he feels better, calmer.

         [Ron to Pat: What brings you feelings of safety, pleasure, and joy?]

Pat: Kindness, awareness of what’s going on, reading, other little jobs around the house, and talks between us.

 

 

Ch.64 Ron Becomes Anxious and Irritable

Summer, 2020

          Lately I’ve been anxious and irritable. I’ll talk about my irritability later in this essay, but for now let me focus on my anxiety.

          Fortunately, I attended a virtual support group for caregivers last night that helped me better understand what’s going on. Every care partner there was stressed to some extent. We soon came up with a common denominator for our tension: the sense that, unpredictably, something bad could happen at any moment. The “bad” thing might be one’s partner falling down, or that person suddenly saying something negative and mean when you thought all was well, or perhaps he/she becoming confused, depressed, or scared for no apparent reason, or in even more difficult situations the individual with Lewy Body walking out the door and disappearing or driving away.  We care partners both witness and then must quickly respond to these new conditions. 

          People with Lewy Body experience rapid and unpredictable fluctuations of mood, cognition, physical condition, and behavior. It’s not their fault, of course. That’s just how Lewy Body affects those we love. But this unpredictability does have an effect. It’s easy to become tense, perhaps unconsciously, waiting for the next scene in this Lewy Body Improv theater. One predictable result for care partners, I believe, is chronic low-grade anxiety.

          Chronically anxious is a perfect description of myself over the last week. Jumpy. Suspicious (“What’s she going to say next? Is she angry with me? If so, why?”). Afraid to let down my guard. Tense. And irritable.

Twice now, I’ve suddenly become angry over something Pat said, some small but unexpected criticism. Both times, I’ve yelled and one time I slammed my fist down on a table. But why? Nothing seemed different than usual. And then I realized that something was different in our lives: Pat’s routine has changed and she’s staying up later. Instead of heading to bed at 8-9 p.m., Pat’s been staying awake until 10-11. I don’t know why she’s changed her pattern. I don’t know if it will last.    

So, here’s my problem. That couple hours at the end of the day has been my private time, my opportunity to relax, my time to let go of stress. Without it, my anxiety level has been building up. When Pat calls me during those night hours my internal reaction is more “Yeah, NOW what do you want?” than “How can I help, honey?”

Ok, now what? Pat, like anyone else, will go to bed when she wants to go to bed. I think I need to make sure I have a couple hours of personal time each day. Lately, most days I’ve gone off to paint after the nightly PBS news hour that ends at 7 pm our time. In addition, I could take a walk with our Collie Levi during the day. I could read. I don’t think it matters what I do so long as I do it on my own.

I’ve never thought of myself as a loner. But now, with us basically staying home all the time because of Covid-19, I must accept my need for private time. I hope Pat will understand that I’m not pushing her away.

 

Pat’s comments on Ron Becomes Anxious and Irritable

          I wasn’t aware that the things I said were so important to you. You haven’t told me so.

          Ron, you spend more time away from me than you realize, and I don’t usually see you coming back and saying “hi” in-between the things you are doing. Maybe there’s not as much difference between us as you think, meaning we both want to spend a lot of time with each other.

          I need alone time too. Sometimes I read a book or nap or go out in the yard. But if you wanted to come out there when I’m in the yard I would be fine with that too. 

 

Ch.65   Pat Tells Us about A Major Decision

          Our family has begun weekly zoom sessions to lessen the isolation associated with Covid-19 safety precautions. This week’s session was attended by our daughter Jennifer, her husband Jeff and daughter Elizabeth; our son Joshua and his wife Patty; my cousin Burton; my niece Laura and her partner Glen; and my twin brother Don and his wife Randa.

          Some weeks we choose a theme question to increase interest and variety. Tonight’s question was: What is one major positive decision have you made? Mine was to decide not to pursue a standard academic career and instead teach at an experimental college (Thomas Jefferson College, once part of Grand Valley State Colleges in Allendale, MI).

          After I told the group about this decision, I asked Pat for one of hers. Here is what she said. “I decided after I received my diagnosis of Lewy Body Dementia that I wouldn’t take it too seriously.” After all, Pat stated, I am still myself and not all that much has changed. She added that was why she became angry with me at times when I take her diagnosis too seriously.

          I remember a care partner at one of our support groups once saying that Lewy Body was the worst affliction someone could ever have. Pat’s comment challenges that kind of depressive thinking.

          I suppose you could call Pat’s frame of mind a kind of denial or minimization. But I think she’s doing something positive and healthy. Pat is refusing to give up or sink into despair. She’s treating Lewy Body the same way you might treat a gradually progressing arthritic condition: don’t pay a lot of attention to it and don’t let it stop you from doing what you normally do.

          One of Pat’s questions to me when I mention that she has Lewy Body symptoms is “What do you mean? What symptoms?” She gets a little combative during these conversations; I had better be able to provide a very specific recent example of any particular symptom or else I should keep quiet. Now I understand better why Pat seems so determined. She is challenging not only me but Lewy Body itself to prove anything is wrong with her.

          A diagnosis is not a person. A person has a diagnosis. That’s all it is. You don’t have to take it too seriously.

 

Pat’s comments on Pat Tells Us about A Major Decision.

          My first comment is when I ask why you said I had Lewy Body symptoms your response is that my thinking is all screwed up or I don’t understand what normal thinking is I would have a tendency to dismiss your comment because I do know what normal thinking is and I do know when I’m thinking normally. I don’t think I live in a state where Lewy Body takes over and makes me think differently very often. I do all right and I feel very much like me. For example, now that I have been diagnosed with Lewy Body and I can’t drive although I resist the temptation to take off in my car and look for places I can enjoy nature, I handle that OK. I use the time with others driving to do the same thing and I don’t feel controlled or bad because I’m not allowed to drive the car despite the fact that I have never had a record of having accidents on the roadway.

 

 

Ch. 66 Pat Takes a Drive with One of Her Husbands

          Pat and I went on a two-hour country drive today. We had a wonderful time observing white, pink, purple and yellow summer flowers and Amish farmers gathering hay with antique horse-drawn equipment. But there was something a little unusual about this trip. During the entire drive Pat and I tried to determine exactly who was driving and where were the other Rons. She asked me a few important questions, such as: Where did we first meet? and when did we marry? Still, even though I answered them correctly (Macalester College; July 3, 1965) Pat just didn’t feel certain about my identity. She didn’t dispute that I was her husband, but she thought I had been missing a long time and I wasn’t her most real husband. She did agree, though, that I was one of her husbands and that I resembled the others.

          I used to become distinctly unsettled by these conversations. It’s still a little unnerving, of course. However, I now realize that this kind of conversation is an aspect of Lewy Body. In fact, during the last support group in which I participated, several care partners mentioned that their spouses experience or experienced similar doubts about their caregiver’s identity.  I do feel bad that Pat has to deal with so much uncertainty in her life. But now when we have these conversations, I try to help Pat feel safe with all of us and to know that whomever she may be with loves and protects her. We are her dedicated support system. 

 

Pat’s comments on Pat Takes a Drive with One of Her Husbands.

          Although a man who was unknown to me picked me up to take me for a ride somewhere he immediately started to tell me how long he had known me, my former occupation, and he wound up telling  me he had recently got together with two of Ron’s and my children and that he was familiar with the area he said he’d drive me to. He did go to that area and I was amused because he started from the south end and went north and then turned around. Before we had always gone the opposite way. Albeit he looked pretty young to me, spoke well, but wasn’t what I’d call my type and when an hour after we left we stopped at home he disappeared I was not surprised. He said he had a task to do. If that is all it takes to be one of my husbands, I must be a pretty easy gal to fool. But I wasn’t fooled. Frankly, I didn’t believe him.

 

Ch.67   Pat has a Second Syncope Episode – but Doesn’t Remember It.

          It’s 8 a.m. and Pat has risen to start the day. I hear her exiting the bedroom, but I can sense something’s wrong. I look up just as she begins to sag against the wall. Fortunately, I reach her in time to set her down gently on the floor. Pat’s eyes have rolled up and she’s unconscious. But not for long. Within a minute she opens her eyes and she is able to respond a little to my urgent inquiries. Having lived through a previous episode, I recognize that she’s had a syncope event, fairly common with Lewy Body, in which someone suddenly and dramatically loses consciousness but soon recovers.

          That’s not the end of our misadventure, though. First, because Pat has arthritis, she has difficulty getting off the floor. As always, she soon devises a plan of operation and eventually reaches our bed, gripping the mattress for leverage. But then, thirty minutes later, she falls again although this time she doesn’t lose consciousness. Finally, Pat rests in bed for a couple hours, until I suggest she arise for lunch in the dining area.

          I like to talk over the events of the day, especially when they’ve been stressful. So, as I sit down with Pat to eat lunch, I mention that it certainly has been a tough start to the day. “Why?” Pat asks. Somehow, she has obliterated all this morning’s events, both the syncope episode and her later fall.

          Although Pat’s memory does fail on occasion, she hasn’t been diagnosed with Alzheimer’s Disease and short-term memory loss hasn’t been especially evident. Pat might forget the time we saw the waterfall in the middle of Hong Kong a decade ago but that’s certainly not the same as forgetting this morning’s near disasters. Even when I tried to prompt her memories nothing happened. Pat did remember, though, the first time she fainted like this, several months ago; You may recall from a previous episode of this journal that I called 911 then and we were visited by a rescue squad.

          I don’t know what to make of all this. Given our training as counselors it’s easy to believe that Pat immediately erased these relatively traumatic events, eliminating them before they had a chance to reach long-term memory centers (or repressed them after they did reach those areas). An alternative is that Pat’s Lewy Body symptoms are worsening and reaching deeper into her ability to absorb new information. Maybe both.

          This unexpected development has heightened one awareness of mine. I would really miss the experience of talking things over with my wife if Pat could not respond to our mutually lived memories, recent or long ago. Especially recent memories. I think I will ask my friend Richard, whose wife has Alzheimer’s Disease, how he handles this situation. What does he feel when Judy cannot recall a recent conversation? How does he deal with his need to process their physically shared but mentally no longer shared memories?

 

Pat’s comments on Pat has a Second Syncope Episode – but Doesn’t Remember It.

          “Ron, I have to take your word this happened, but I don’t remember it at all.”

 

 

Ch.68   Pat Develops a Serious Auto-Immune Disorder

          July, 2020.

          Pat woke up about a month ago with liquid filled blisters on her arms and legs. They were both painful and itchy. The blisters quickly became more plentiful. Pat was miserable: unable to sleep, unable to quit scratching, in pain everywhere. Soon she was diagnosed with bullous pemphigoid, an auto-immune disorder. As Pat grew weaker because of this debilitating condition, her thinking deteriorated, and she more easily became confused. And then she fell in the shower and was unable to get back on her feet, necessitating a call for help and a visit to the emergency room.

          BP, as it is nicknamed, occurs when the immune system mistakenly attacks tiny fibers that connect the epidermis with the dermis (the upper two layers of the skin). Although quite rare, its occurrence is associated with dementia and cerebrovascular diseases, according to several research reports.

          Tonight, as I’m writing this essay, Pat is doing better. Her dermatologist, Dr. Galbraith, has put her on prednisone, a strong steroid, that almost immediately began tempering the immune system attack. However, this condition is chronic, often lasting several years with periodic flareups like the one Pat is currently enduring.

          You might be wondering how well we are holding up. Pat seems to be doing a little better now that her medicine is lessening her pain. She has cried a few times, though, which she does rarely. Meanwhile, I am barely keeping myself together, especially now that the immediate crisis has abated, and I have time to think and feel. Watching Pat suffer is terrible; feeling helpless to alleviate her suffering is worse.  Also, it’s particularly intimidating to realize that we’ll probably be dealing with this affliction for many months or years.

          I have reached out for my emotional support system: my brother Don and my children and friends. I need them now, as does Pat.

 

Pat’s comments on Pat Develops a Serious Auto-Immune Disorder

          I don’t recommend that anyone else gets this. This feels like it will last several years but it might just be periodic. Ron is amazing. He’s getting me through this even though it’s obviously painful to him and he has reached out to his emotional support system – his brothers, our children and friends.

          Emotionally, it makes me feel worse about myself and I wonder if it will ever end. On the other hand, I feel with the good care I’m receiving from the doctors and the support of my family and friends it will get better.

          I don’t know how long this will last—outside of the persistent pain I’m in I’m OK.

          I really miss singing in the choir and going to the book club, but I can’t do those things right now. I wish I could.

ADDED NOTE: December, 2020.  With the help of appropriate medicines, Pat has not had any breakouts in the five months since we wrote this essay. However, we can still see the shadows of her disease on her legs which remind us every day of this terrible affliction.

 

Ch.69   Pat has Gumption

          My guess is that if you are under 50 years old you have probably never heard the word “gumption.” It truly is an old-fashioned word, dating to the early 1700’s but not much in use anymore. That’s too bad because “gumption” is one word that helps describe Pat’s personality.

          One good definition of “gumption” is “shrewd or spirited initiative and resourcefulness.” People with gumption possess drive, initiative, common sense, and the energy that makes doing difficult things possible. If you have gumption, you have guts, determination, and willingness to take certain risks. You are not easily deterred by the possibility of failure.

          Pat often displayed gumption in her career as a mental health counselor. She was not afraid to take on “impossible” clients, such as people with borderline disorder or multiple personality disorders. She became a “therapist of last resort” in the Eau Claire region, often helping these “impossible” clients work through their myriad issues with a combination of creative interventions, humor, tremendous empathy, and tenacity. Pat never gave up on clients and she was willing to try new approaches with them even when the results could not be entirely predicted. She had gumption.

          Pat still has gumption. It’s a good thing, too, because now she is facing the double challenge of Lewy Body and this horrible auto-immune disorder, bullous pemphigoid (See Ch.68 for details). Pat hasn’t run away from either misfortune. Regarding Lewy Body, she has co-written this journal, helping others learn about it while refusing to let it define her. Yes, Pat has Lewy Body but that is only a small fragment of her total being. Regarding bullous pemphigoid, Pat is dealing with this malady in several ways: she rests when necessary but does as much as she can during the day; she refuses to pity herself or let others pity her; she insists that eventually she will rid herself of this condition; she maintains deep love and caring for her family and for the state of the world. Once again, Pat has bullous pemphigoid but that does not define her being.

          Pat does not give up in difficult situations. She has too much gumption.

 

Pat’s comments on Pat has Gumption:

          Gumption is having the courage to take a bite out of something. That’s how it was defined for me by my father. I have gumption – the ability to confront something. Sometimes I run away but I come back. I ask myself “Where’s my gumption?”

          It helps when Ron uses that word for me. Gumption is a word that fits me. Ron used that word and it was helpful. It brought that feeling all back to me.

          When I feel like sloughing off and not confronting this disease I say, “Come on.” 

Ch.70   Exhaustion and Relief

August 2020

          These last few weeks have been physically and psychologically exhausting for me as Pat has endured the symptoms of bullous pemphigoid, this strange auto-immune disorder that blisters her skin. It’s been hard to sleep well, in part because Pat frequently cries out in pain during the night. But mostly it’s been a case of nonstop worrying while feeling almost helpless.

          Fortunately, though, Pat has responded well to prednisone treatment. Since she began taking prednisone two weeks ago few new blisters have developed and the older ones are slowly fading away, giving her skin a chance to rebuild itself (The blisters destroy the outer layers of the skin, which is one reason it is so painful). Today Pat was able to take a brief country drive in the car, our first since this disorder developed.

          Today felt almost normal. It’s funny, though, that “normal” now includes Lewy Body. Believe me, when I say that there are things worse than Lewy Body I can now personally attest to that fact. Bullous pemphigoid is far worse.

          I’ve begun to relax a little. However, bodies tend to adapt slowly to changes in the environment. Although intellectually I realize the worst is over, at least for now, I think it will take another few days, or more, before I feel truly safe.

          Pat is slowly tapering her prednisone. Apparently not even her dermatologist, Dr. Galbraith, can predict whether Pat’s symptoms will reappear. That’s another reason I cannot completely relax.

          Meanwhile, Pat still is using her gumption to challenge her pain. Today she told me she’s going past mere survival and finding joy again in her life. Plus, she’s tried to reassure me that she is doing ok. Pat recognizes that right now I’m too tired out to help her much so she’s emotionally helping me instead.

 

 

Pat’s comments on Exhaustion and Relief.

          We’ve always been a team and Ron is part of my joy and I want him to continue to be that.

          I still hurt a lot but I’m helping myself more, so Ron doesn’t have to help me so much and that helps me feel stronger.

          My Dad when he was alive taught me to have gumption. I’m proud of that. My gumption brings me joy when I can do something unexpected. I feel a challenge and that brings me joy when I do it.

          And I love bringing Ron joy too.

 

 

Ch.71 A Feeling of Helplessness              

August 2020.

          “Ron, what’s going on in the room above us? There’s crashing sounds and I don’t know what’s happening.” Pat says this to me on a Wednesday morning just after I step out of the shower. She looks scared.

          The problem is that there is no room above us. Just the roof of our home. I try to tell Pat this, but she becomes angry with me. There is no doubt in her mind that there is a place upstairs from which ominous sounds keep emerging. We sit uncomfortably with each other for half an hour, repeating ourselves. Finally, Pat says “I am not crazy!”

          “I know you’re not crazy, honey,” I reply. “Could this be Lewy Body affecting you?” (I can predict from past experiences that this inquiry will only result in angry denial, but I am feeling desperate). “No, Ron, absolutely not,” Pat insists. Fifteen minutes later we’ve moved out of the bedroom and to our dining room table. In the meantime, Pat has gone outside to look up at the roof. We are at an impasse.

          I am feeling utterly helpless. Pat is suffering emotionally; anything I say only makes things worse. She needs me to believe and support her, to agree that there is an upstairs room where people are throwing things around. I could do that. Rather, I could have done that 45 minutes ago. Pat wouldn’t believe me now if I said it; she’d accuse me correctly of trying to placate her.

          There is only one option I can think of, namely to break the impasse by doing something else. Fortunately, we do need to pick up a book from the library to show to our book club members. The club is meeting later this afternoon. Pat accepts my invitation to ride along. By the time we reach our car I’m feeling better. The ride to the library turns into a country drive just at the start of fall and together we admire the bright red leaves that always emerge first as the woods begin coloring themselves. Our day brightens too. 

          Let me return to the sense of helplessness mentioned above. I am aware from many conversations with care partners that this is an all too common sensation. Helplessness, for me, is a combination of empathy because I feel my loved one’s anguish, frustration because I can’t help the person I love, despair as problems spiral out of control, and shame about not being wise enough to help my partner.

          Acceptance of one’s limits is one antidote for helplessness. However, that kind of self-awareness and self-compassion is difficult to achieve when the person you love is hurting a lot. I’m feeling some acceptance now as I write this passage, in retrospect, but I couldn’t get there in the middle of Pat’s pain.

 

Pat’s comments on A Feeling of Helplessness: Dealing with an issue like this, repeating ourselves and disagreeing and becoming at an impasse I feel utterly helpless as well and I feel anything I say will only make things worse. I don’t want you to placate me. I think the idea of doing something else is a good diversion and our day can brighten that way. I know I feel helpless because I’ve been hearing things that are loud and I can feel your anguish. I feel helpless and shame about not being wise enough to shut up.

          Where is the upstairs noise coming from? Who is causing it? Somebody’s throwing stuff around. It isn’t me or you. It’s an unknown. I can’t come up with any satisfactory explanations so basically I feel awful, you feel awful, we both think the other person is lying although that’s probably not true. I don’t know what to do so I go inside myself to cry quietly – feeling dumb and helpless when I have no idea what to do. Why would I have any idea what to do?

          I don’t want to argue. If you can prove there isn’t another level I’ll believe you. Except there have been people outside our room on this level and they are outside this door on our level. But that happened after I heard all the crumbling. Maybe that’s me crumbling. Sometimes it feels like it is.

ADDED NOTE: January 2021.

          Pat and I always read our essays before placing them on the Lewy Body dialogue website. This time we agreed that the theme of helplessness above is a little too strong and dark. We have decided to add a more positive note.

          There have been no roof episodes like the one mentioned above in the last five months. That’s good. But what is better is that Pat and I can still discuss what’s happening in our lives, including the occasional disruptions caused by Lewy Body. I think the main message in our blog is that we are still a team and nothing, not even Lewy Body, can separate us.

 

Ch 72. Something Bad has Happened to Lakota. And Pat has a Fall.

          October, 2020.

          My horse Lakota and I have established a nice morning ritual. He whinnies at me as soon as I open the door at 7 a.m. and I yell hello before turning away to fill the birdfeeders. Then I walk to the “stable” (our garage) to feed him. But this morning I heard no whinny and I saw no friendly face looking my way. Mildly concerned, I went looking for him. I found Lakota in another field near his hay feeding area. Something was strange, though; Lakota wasn’t moving. He was staring straight ahead into nothing. I ran to him. He was almost non-responsive although he seemed to recognize me. I brought out some hay that he sniffed and then chewed a couple bites in extreme slow motion.

          Lakota is the first and only horse we’ve owned. We rescued him about twenty-five years ago when his previous owners realized he couldn’t be ridden safely because Lakota has a shoulder injury. He’s a “wobbler.” We love him.

          Naturally, this crisis happened on a weekend. I think there is some unwritten tradition that says all serious crises, human or pet, must occur when help is least available. Our veterinary clinic was open, but they couldn’t get someone to our home until 2:30 that afternoon – a seven-hour nerve-wracking wait during which I cried and Pat comforted me. Meanwhile, Lakota remained virtually motionless although he did manage a weak whinny one time when I approached.

          Finally help arrived, first in the form of our friend and horse owner Forrest Nutter and then the veterinarian Dr. Meg Mueller. They agreed that Lakota almost certainly had a tic-related infection (Lyme’s disease runs rampant in Wisconsin), which was a far better diagnosis than the two possibilities I had considered, a seizure or a stroke.

           While Dr. Mueller prepared a concoction of three antibiotics to be administrated intravenously, I hustled indoors to tell Pat the good news. I got there just in time to see her falling backwards and hitting her head on the edge of the brick fireplace. Not good, especially since she already had been suffering neck pain for two days. Thankfully, Pat did get back on her feet in a few minutes, but she is still in pain as I write this essay at 8 p.m.

          I am relieved to report that when I checked on Lakota around 5 p.m. he greeted me heartedly, ran up to the fence where I stood, and followed me back to his stable for a long-delayed breakfast of senior pellets, oats and apples.

          What does all this have to do with Lewy Body? Once again Pat and I had a role reversal – Pat cared for and comforted me today when I started to disintegrate with worry. I think Pat’s instincts to care and comfort are stronger than ever. Lewy Body may have affected some of her cognitive abilities, but it hasn’t taken away her compassion. I also realize that I have become more emotional and, frankly, less stable over time. The space between my handling a difficult situation calmly and falling apart during or after that crisis has narrowed. I attribute this change partly to getting older and partly to continuing stress related to coping on a daily basis with Lewy Body disruptions to our lives.

          One of the features of Lewy Body life is frequent small and occasional serious crises. Today, facing the double calamity of Lakota’s paralysis and Pat’s falling was particularly stressful. I am grateful that Pat could comfort me when I most needed her.

 

Pat’s Comments on Something Bad has Happened to Lakota. And Pat has a Fall.

          When Ron told me that Lakota wasn’t moving, that worried me quite a bit.

          I guess my response to Ron’s anxiety is that it would be interesting to find out what would happen if Ron sat down and thought about it rather than stay anxious, because it’s hard for me when Ron doesn’t choose to do anything about his anxiety or even talk to himself about it.

Pat to Ron: “How anxious are you, Ron, on a regular basis?”

Ron’s answer: “About 4 on a scale of 1-10.”

 

Ch.73 “This is My House”

October, 2020

          Pat makes this remark and then points out several items on our fireplace mantle that are familiar: two paint by number pictures I completed; a picture of her father C. Stanley Potter; a needlepoint celebrating our 35th anniversary created by our daughter Cindy, etc. This is her house, and at this moment it feels like home to Pat.

          Two members of my Lewy Body caregivers support group have described how their spouses (one husband, one wife) keep packing up clothes, tools, and other belongings as they get ready to travel from a place that no longer feels like home to their “real” home. Now it’s Pat’s turn. She has insisted over the previous two days that this place might look like our house, but it isn’t her home. She described her real home as near the river, which implied she might have been mixing up her family homestead on the St. Croix River with our current home of over 30 years in rural Wisconsin. But when I mentioned that possibility, she told me she knew the difference quite clearly.

          My fellow caregivers say this confusing situation tends to get worse over time. What bothers them the most is the emotional pain it causes their partners, a terrible sense that nothing is as it should be; these persons they love no longer experience the stable place of safety and security we call home.

           What does a caregiver do in this difficult situation? 1) Try to convince your partner that here is home? 2) Ignore your partner and hope he or she will let it go or become distracted? 3) Tell your partner that the moving vans have been delayed and won’t get here until tomorrow? Group members have tried all these approaches.

          So far, I’ve only attempted the first two tactics above because of an aversion to deception. After all, my wife deserves the truth. But what if she cannot accept it? How much value is there in truth that cannot be assimilated and only increases pain? I’m certain my fellow caregivers are just as uncomfortable with deceit as I am. Should the fact they’ve used manipulation be judged negatively when they report telling a lie is the only way they can calm the person they love?  I think not because I put truth in the service of love and not vice-versa. Love is greater than truth and sometimes truth must be sacrificed in the name of love for your partner.

 

Pat’s comments on “This is My House.”

          Well, I don’t know what to say about this. It’s confusing. I don’t really remember any of this. What most people around me say is that this is where we live now. This is home. I’ve heard that in a lot of places – here, with you, and I’ve heard it at times when I’ve been living down south. This is our house now. We bought this house. I’ve heard a lot of things like that.

          All the people say “this is your home” so I’ve learned that that my house tends to be where I’m living right now with the person I’m living with. Sometimes this feels right and sometimes it doesn’t.

 

Ch.74 “I think I Did OK but Not Better Than OK”

October, 2020.

          Once a year Pat is scheduled to take a battery of neuropsychology tests that measure her performance on memory, problem-solving, and related cognitive skills. These tests take about 1½ hours to complete and leave Pat exhausted. Then we wait around while they are scored and given to the clinical psychologist, Dr. Michelle Ries. And then we enter her office to discuss the results with her.

          Dr. Ries asked Pat how she thought she had done. Pat’s response: “I think I did OK but not better than OK.” She was correct. Pat’s scores were not as good as they had been the year before (although they were about the same as they had been two years ago – Pat had actually improved her scores last year as a result of better health and taking a generic form of Aricept). Specifically, Pat’s ability to remember has diminished somewhat and I also think it is harder for her to follow directions now than before.

          Dr. Ries did note that Pat is a fighter who doesn’t give up even when things are difficult. I’ve noticed that characteristic on many occasions. One example occurs when we put together jigsaw puzzles. The pieces may not want to cooperate some days, but Pat won’t just give up and quit. She keeps working with them until she makes at least a few connections. And that apparently is what she did today during testing.

          I believe that Pat’s determination applies to much more than solving puzzles and taking tests; Pat is committed to challenging Lewy Body’s attack upon her faculties. Of course, she can’t stop Lewy body completely. It is a progressive condition. But Pat can slow its effects by staying active and accepting cognitive challenges like doing jigsaw puzzles. And that is exactly what she does.

 

Pat’s comments on “I think I Did OK but Not Better Than OK”

          The testing was hard. Many times, I just gave up and quit in the middle of it – I couldn’t do another one. But I am committed, like Ron says, to challenging Lewy Body’s attack on my faculties. I know Lewy Body is a progressive condition, but I do keep trying to combat it.

          My ability to remember and to follow directions has diminished – sometimes they are just so confusing – but that’s probably part of my changes.

 

 

Ch.75 I’m Grateful We Can Still Disagree

November 2021

          I stumbled into a difficult situation a few days ago. It concerned a man I’ll call Sidney, a former client (over 10 years ago) with whom I’ve maintained occasional contact. Unfortunately, Sidney is not a very likable fellow. He has strange mannerisms and a quick temper. Sidney

calls me when he gets into trouble, asking for sympathy and advice. And this time he was in deep trouble.

          Sidney, now homeless and living out of his car, had fallen in love with a woman who supposedly lives in Virginia. He was sending her money and jewelry as he waited for her to come get him and take him there. She was obviously conning him as I and others had told him, but Sidney was terribly lonely, so empty inside that he forced himself to keep believing she was real. He had decided to take a train to Norfolk to find her even though he didn’t have her address. He departed with little cash, no place to stay; his fuel was his desperation.

          Things went poorly for Sidney. He called me when he was almost completely broke and broken. No, he hadn’t found his woman (but he still wanted to believe in her). He was sleeping in a bus station. He was hungry. He needed to get back to Wisconsin. Would I help him by paying for a return ticket to Milwaukee?

          I was inclined to help Sidney, mostly because I feared for his safety. The line from an old folk song kept running through my mind: “Nobody knows you when you’re down and out.” But when I asked Pat her opinion, she was against it. “Just watch,” she said. “He’ll want more money from you.” She argued essentially that Sidney was both a victim of a con job and that he was conning me.

          Having a serious talk was challenging for both of us. Pat correctly accused me, after our first discussion, of trying to avoid the subject because we disagreed. I had to realize that avoidance wasn’t helpful. Meanwhile, Pat’s gut instincts were good, but she sometimes had difficulty saying what she thought. She also referred to several of my relatives who had warned her about Sidney even though I doubt that any of them had met him. We talked about the issue several times over the next couple days until I decided that I would buy Sidney a ticket to Wisconsin. Pat continued to disagree but supported me once my decision was made.

           Sure enough, Pat was right about Sidney asking for more money. The friend he thought would pick him up in Milwaukee never materialized and I ended up spending more money to get him back to his home town in Western Wisconsin. I’ve tried to assure Pat that I won’t give Sidney more money. I will keep Pat’s warnings in mind if and when Sidney calls again.

          I am grateful that Pat and I can disagree. I am more grateful that we can disagree and still have a meaningful conversation about important issues.

          Yes, Pat has Lewy Body. But that doesn’t stop her from having good ideas.

 

Pat’s comments on I’m Grateful We Can Still Disagree.  

          I thought that Sidney was trying to take advantage of Ron. I think Sidney should be directed to look at how he himself can take part if anything restorative can be done and then determine if he’s going to do that again. Sidney has to start making decisions when he can say he’s done all he can do or whether he should keep going whether it’s helpful to him or not.

          Just because I have Lewy Body doesn’t mean I should take advantage of someone else – that’s my baseline. Sidney shouldn’t take advantage of people. If he has a problem dealing with his reality then he has to come up with a solution that helps take a real part in mending the problem.

 

Ch.76 How Can We Keep Pat Involved in the Conversation?

          November, 2020.

          We’ve had a week of beautiful weather here in Western Wisconsin. 70 Degree (Fahrenheit) days this late in the year are almost unheard of, but here they are. Pat and I have taken advantage of this pre-winter break to indulge in a series of porch visits with our children and friends. However, during these visits I noticed that frequently only 3 people were speaking in each foursome. Pat was mostly silent. When I asked her about it, she told me that everybody else was talking too fast and switching subjects too quickly for her to say anything.

          Yesterday we were waking up together around 7 a.m. Pat made a comment about our family and I answered. Then I drifted along in that space between sleep and wakefulness for a minute, only to hear Pat then make a follow-up comment. This happened several times more, each statement following a long pause. Afterwards I thought about a duplicate bridge acquaintance named Carl I met in bridge tournaments and a friend of mine from grad school named Jim. Each talked slowly. They both tended to fade away during group conversations. With Jim, I discovered that I could only converse with him if I were willing to wait several seconds for a reply to any question I might ask. Only then did I discover that this quiet man often had brilliant ideas.

          The one place in which Pat does get a good chance to speak is our book club. Members there know Pat has Lewy Body. They take time to ask for her thoughts and then they wait awhile for her to respond. I think they do so because they’ve discovered that Pat will say something interesting and informative when they give her time.

          Lewy Body has slowed Pat’s conversation rate.  I need to remember to allow time for her to consider and deliver her thoughts when we talk. Also, I think we need to let family and friends know our situation. Otherwise, they might ask Pat a question and then go on to someone else before she has a chance to respond.

                                                                    

Pat’s comments on How Can We Keep Pat Involved in the Conversation?

Ron: How does it feel when you can’t get in a word edgewise?

Pat: I feel there is very little purpose in talking because my words won’t have any real effect. I feel like what I’m saying isn’t making much of a difference to you guys and I need to know what I could say that would make a difference. If nobody takes the time to listen to me then I don’t feel like I matter. It makes me feel unimportant. If I am really a friend of yours then I want to know you can accept what I am saying equally to what you’re saying and not pretend to be doing that when you’re not.

 

 

Ch. 77 Pat Forgets but then She Remembers

November 2020. (Note that we first covered this topic in Ch.62: Short- and Long-Term Memory Loss, that was written in April, 2020.)

          Our family has a Zoom session every week. It’s a chance for family members scattered across the continent to share information about what and how they are doing. Near the end of this most recent session I casually mentioned that Pat and I had watched a great movie the night before: The Quartet, a film directed by Dustin Hoffman that takes place at a retirement home for musicians. Pat appeared startled. “I don’t remember watching a movie last night,” she said. This has been happening occasionally and usually Pat will recall things once I give her a prompt or two. So, I mentioned the plot, the stars (Maggie Smith, Tom Courtenay) and the music. Nothing. No recognition.

          Lewy Body creates many challenges to our daily functioning. Emotional fluctuation; confusion; fainting; slowed movement. And memory loss, although from what I’ve read and heard not everyone diagnosed with Lewy Body suffers from this condition. Unfortunately, sometimes Pat’s brain seems to have difficulty transferring data from short-term into long-term storage. That worries me. I also felt saddened in this situation because I had hoped we’d be able to share later the enjoyment we had felt when we watched that movie. When I shared this thought with my support group other members told me they had the same sense of loss. But, they added, it’s a reminder to appreciate in the present moments of closeness with our partners, even if they don’t produce longer term shared memories.

          The Zoom session ended at 8 p.m. I suggested we try watching The Quartet again to see if Pat would remember it once she saw it. She agreed. At first there were no signs of recognition but eventually Pat did say she was remembering some of the scenes as they were playing out. The next morning Pat was able to recall both the name of the film and its main plot. I felt relief, of course. At least for now we are able to share this small memory of us doing something fun together.

 

Pat’s comments on Pat Forgets but then She Remembers:

          I did remember some of the scenes as the played out, the name of the film and the main plot. I felt relief and it was nice to share the small memory of something fun together.

          Well, I forget more than I used to. I have different things going on in my mind. If they all fit in that’s neat but if they don’t then I miss them.

         

 

Ch.78 An Emotional Roller Coaster Day

          November, 2020

          It’s become a cliché to say that the Lewy Body experience feels like being on a roller coaster. I promised myself I would never use that term in this journal. However, “roller coaster” exactly mirrors my feelings about today.

          8:00 a.m. Pat wakes up feeling sad and tells me she needs to have me take her to her home. When I try to explain that we are in our home she becomes irate and calls me a liar. Frustrated and feeling hopeless, I leave the room for a few minutes but come back to try to come to some resolution. By accident I mention I like one of her necklaces and soon we are absorbed in looking through several jewelry boxes filled with minerals, rings and necklaces. Pat relaxes and doesn’t mention trying to find her home. I relax as well.

          We eat lunch about noon and decide to take a country drive before I watch the Badgers football game. We don’t say much but we enjoy the drive. When we get home, Pat tells me to have fun watching the game and goes off to take a nap. But by halftime she’s up and demands to know when the game will end (Football games do seem to last forever. Three hours is a long time, longer than we usually are apart). Pat feels abandoned; I feel annoyed. We argue a little, I decide to tape the remainder of the game, and we settle on watching the weekend national news. That goes well and then we eat supper. Next on our impromptu agenda is a Netflix movie. Pat becomes irritated when I take too long to find one to watch but we do find a good one (“The Queen”). Then Pat goes to bed and tells me how happy she is with me.

          Now I am alone and have time to reflect on the day. I felt helpless when Pat asked me to take her home, loving as we appreciated her jewelry, calm as we drove around, thankful when she told me to enjoy the game, annoyed when Pat woke up from her nap and complained about the length of the game, and comfortable as watched the movie. I’m sure Pat felt many of these same emotions, probably more intensely than I did. Too many emotional ups and downs for me. Now, at 10 p.m. I feel tired, emotionally spent.

          Maybe we can get off the roller coaster tomorrow.

 

Pat’s comments on: A Roller Coaster Day:

          Ron to Pat: Was that day also an emotional roller coaster day for you?”

          Not on the same day. A day that is an emotional roller coaster day for you and one that is an emotional roller coaster for me aren’t necessarily the same.

          I can’t remember a day I’ve had an emotional roller coaster. It’s not a reaction I usually have. I just have one emotion at a    time and then it’s over.

 

Ch.79 Three in the Morning: Leaving Our Home to Seek Pat’s Home

          December, 2020.

          It’s 3 a.m. and I awaken to the sounds of Pat getting dressed. “You need to drive me to my home,” she tells me. I try to remind her that we are home. “No,” Pat says sternly, “This is your home, not mine.” She insists I take her to her place, wherever that might be. Pat is certain I know where she lives. She is angry with me for “playing games” on her. Pat tells me she’ll go out to the car and drive herself if I won’t help.

          Now what? It’s well below freezing outside so I cannot just let her sit outside. Plus, I’m afraid Pat might fall in the dark and be unable to get up.

          I get dressed and head for the car. We take Levi, our collie, who doesn’t look all that happy about coming along in the wake of our raised voices. We leave Blackie the cat who does want to get in the car (but who gets carsick when it’s in motion).

          Where should we go? “You know,” Pat asserts. I drive around, all the while telling her I don’t know the way to any house other than our own. I happen to state that the only place I know is at W23654 County Road U, our home address. That’s right, Pat says, “Go there.” And so we do. I point out the address by the mailbox and Pat agrees that this is her home. We get out, walk upstairs, and go back to bed.

          I’m not sure if Pat will remember what happened last night. I will.

Pat’s comments on Three in the Morning: Leaving Our Home to Find Pat’s Home.

          “I don’t remember this at all.”

Added Comment: Pat and I did sit down and talk after she made the comment above. We discussed how she just doesn’t feel comfortable in this house. I mentioned that Lewy Body does this to many people. We shared our sadness, Pat’s sense of loss of her homestead and my loss of a sense of a shared life together.

 

Ch. 80   Hoping for a Miracle

          Dec. 29, 2020.

          Blackie the cat sits on my lap as I consider all that’s happened this year and all that didn’t happen. Covid-19 happened. Civic life suffered. Masking happened. Family gatherings withered. Survival happened. Thriving was problematic. Fortunately, Lewy Body support groups are still happening, on Zoom, but seeing our fellow members in person has ended (we hope temporarily).

          Meanwhile, Pat’s Lewy Body symptoms have gradually progressed, especially short-term memory (see Chapter 62). She’s more likely to feel disoriented as well, for example when our home becomes temporarily unfamiliar. I’m grateful, though, that the progression so far seems to be going slowly. Pat is still Pat and it looks like she plans to stick around a long while.

          I asked my family members what they might hope for this coming year during our weekly Zoom family session. Of course, that meant I had to think about my own hopes. I was surprised to find myself wishing for a miracle cure, a little pill that would banish Lewy Body forever. I don’t usually let myself make wishes like that because they force me to confront the reality that no such medicine exists, and none appears to be on the way in the foreseeable future. Wishing for that miracle usually just fills me with sadness. It did this time too. Still, that hope emerged, declining my realist’s attempted veto and despite the pain that followed. It was insistent. It is insistent.

          Who knows? Maybe the isolation forced upon us in 2020 has spurred some scientist to take a new tack, to try a different approach to dementia that will create a cure for Lewy Body. Why not?

          Oh, by the way, the cure would also restore people with Lewy Body to full functioning. Might as well hope for the whole package.

Pat’s comments on Hoping for a Miracle:

          I’m hoping for a miracle too. It doesn’t make me feel sad.

          I think I do have miracles every day. There’s always something happening and if it isn’t bad then it’s probably good. This morning I woke up with thoughts that nothing would change but then those thoughts didn’t stick and I feel better and I’ve thought of some things that help me.

 

 

Ch. 81 Pat and I Watch a Movie whose Main Character has Dementia   

January 2021     

Pat and I just finished watching and discussing the movie Elizabeth is Missing, starring Glenda Jackson as an elderly widow named Maud whose Alzheimer’s symptoms are worsening quickly. During the course of the movie, Maud gradually solves the mystery of her sister’s disappearance some sixty years before, all the while thinking she is searching for her missing friend Elizabeth. Meanwhile, there are several heart-breaking scenes between Maud and her caregiver daughter Helen (played by Helen Behan) as they struggle through situations such as Maud mistaking her granddaughter for a servant girl and the children selling the family home. Her daughter tries to be understanding but occasionally melts down and screams at her mother (as does Maud scream at her daughter).

          I was a little surprised that Pat wanted to see this film. I was ambivalent myself and probably would have passed on it if Pat hadn’t expressed interest. I did find myself identifying with the caregiver daughter, especially when she turns away from her mother to hide the tears that come at moments when she loses her mother to dementia. I know that feeling very well. The last time I felt that way was when Pat insisted in the middle of the night that I take her to her real home (Ch.79). But, just like when Pat disappears for a while into that void, in the movie Maud always returns and rejoins the shared mother/daughter universe.

          Meanwhile, Pat did identify to some extent with Maud. But she maintained a certain distance, noting correctly that her symptoms were not as severe or vivid as Maud’s. Plus, Pat has Lewy Body, not Alzheimer’s, although in many ways the movie character could just as easily been said to have Lewy Body, given her rapid mood changes and delusions. Nor does Pat remember the “take me home” incident. Once Pat’s Lewy Body unreal states finish, they are immediately erased from her memory banks.

          I’m glad Pat and I were able to watch this film together. It was scary to do so but worthwhile.

Pat’s comments on Pat and I Watch a Movie whose Main Character has Dementia:

          I thought the movie was very scary and there were times I didn’t want to watch it, but I did. I wouldn’t want to be that person, ever, and maybe that is what scared me. But in this scenario it wasn‘t me.

          I’m not crazy, by the way.

 

Ch.82 The Gobbler and the Slow Poke: How Lewy Body has Affected our Mealtimes

          I’ve always been a fast eater. Pat has always taken her time. We’ve often kidded each other about this difference: “Are you done already?” vs. “Haven’t you finished yet?” But that was when “fast” meant my eating a full meal about five to ten minutes quicker than Pat.  Lewy Body has gradually increased the gap, to the point now that recently I realized I had finished my dinner before Pat had even begun. And that was with a bowl of beef stew, one of her favorite meals.

          Typically, now, I bring our meals to our tv trays (the tv may or may not be on – that doesn’t seem to make a difference). Pat says thank you but keeps on reading a magazine or doing whatever else she’s been doing. It’s as if she couldn’t care less if she eats or not. In fact, Pat’s appetite has diminished appreciably since she was diagnosed with Lewy Body. It lessened even more when she was put on the diabetic medicine Ozempic a few months ago. Ozempic advertises that weight loss is one of its possible benefits. Pat has lost perhaps twenty pounds in the last year. She likes losing weight, but I worry because I’ve seen Lewy Body patients lose so much weight that they become rail thin.

          If Pat is reading and I say “Pat, your dinner is here” she tells me she knows that, but she keeps reading. Eventually, she takes a bite or two and goes back to her magazine. This frustrates me, Pat’s hard-working chef, wanting my creation to be appreciated. It frustrates our Collie-mix Levi even more as he waits longingly for the last bite.

          People with Lewy Body tend to ignore the usual social conventions (Dinner conventions are just one example). I don’t know why. Maybe life is now too short to bother with society’s unwritten norms and mores or perhaps they have actually forgotten them. I haven’t forgotten them, though, and I struggle to accept these changes. Before I serve a meal, I try to remind myself that Pat is Pat, and she has the right to eat at her own speed. I also attempt to remember that the main point is for her to consume enough calories to stabilize her weight. One hard part is not sneaking peeks to see how much and how fast Pat is eating. The hardest part is keeping my mouth shut.

          There is one saving grace, though. The one meal Pat still eats relatively eagerly and quickly is steak. Medium rare. Life could be worse.

Pat’s comments on The Gobbler and the Slowpoke:

          We do eat at different speeds and what turns you on may not be what turns me on. It doesn’t bother me when you finish your meal ahead of me.

          Ron, you’re not counting your own bites. You are only talking about my bites. You are paying too much attention to me. I am not rail thin. It’s a good thing to lose weight because I’ve always been too heavy in the past, as you’ve pointed out so it doesn’t make sense to criticize me now for losing weight.

 

Ch. 83 The Body Keeps the Score

February 2021

          Bessel Van der Kolk wrote a book with this title in 2014. It was a breakthrough book because it was one of the first to discuss how one’s body may be affected by trauma. Basically, he argued that people may repress the awareness of trauma but that there will often be telltale signs of it in the ways we hold our bodies and move about. An individual may think he is fine but his or her body will hint otherwise. 

          The main message in his book: Listen to your body. It tells the truth.

          I believe that Lewy Body can be traumatic both for the person with Lewy Body and that person’s caregivers. So, it makes sense for us to watch our bodies for signs of discomfort that we aren’t consciously aware of. Here is my personal example.

          I am a “doer” kind of person. I like to stay busy. Taking on the many tasks of a care partner such as cooking, laundry, and shopping keep me going. I tell myself that I am “fine” when I am busy. I also tell myself that I am perfectly healthy and physically quite capable of being a long-term care partner. I’d like to think I could do this forever, virtually without help, especially in this pandemic world we live in. Unfortunately, my stomach and bowels don’t agree.  They have increasingly tried to tell me I am not doing as well as I think I am. “Don’t ignore us,” they seem to say, “or you’ll get really sick soon.”

          Last week I gave in. I made an appointment in the gastroenterology department at Eau Claire’s Mayo Clinic. The receptionist making the appointment told me I would be seeing a nurse practitioner whose first name is Hope (That seemed rather providential). The receptionist also mentioned that I would be seeing Hope again! Apparently, I saw her last year, but I had completely forgotten.  How’s that for repression?  I’m sure my body remembered the past appointment, though, even if I could not.

          I asked my daughter Jenny to stay with Pat while I saw the doctor. This was only the second or third time I’ve sought relief in the eleven months since the Covid shutdown began. Jenny was willing. Pat was happy. They had a good time being with each other and I didn’t have to worry about what might be going wrong while I was away from home.

          Hope and I discussed my symptoms (loose bowels, stomach aches, bloating), ordered some tests, and reassured me that I almost certainly wasn’t going to die from colon cancer. She ordered one medication and rearranged the time of day I take a couple others. Hope also gave me a little praise for taking care of myself by coming in for this appointment.

          My body does keep the score. It sends messages as well. And today’s message is that I need to take care of myself better. I hear it now. But I wouldn’t be surprised if about this time next year, I call the gastroenterology department and make another “first time” appointment with Hope.

Pat’s comments on The Body Keeps the Score.”

Ron to Pat: “Do you think Ron will actually take better care of himself?

          Pat: I don’t know if he will take better care of himself. I’m not doubting it. I just don’t know.

 

Ch.84 Being Lost is Not a Great Experience

          February 2021.

          Do you remember the opening scene of On Golden Pond, during which Henry Fonda stumbles into his cabin looking scared and dumbfounded? “I got lost,“ he says. “I got lost on the same walk I’ve taken for years. What’s happening?” Fonda is experiencing the early stages of dementia. 

          Last night I woke around 4 a.m. because I heard Pat making small, scared sounds. I held her and we stayed touching while she slowly calmed down. I assured her that I would keep her safe. I would protect her. I would never leave her. That is when she said: “Being lost is not a great experience.”

          I remember times I have been lost, once in the woods at an out of state park. I felt my fear mounting from “nervous” to “anxious” to “panicked” in just a few minutes. (I grew up in a city and have never felt at home in the woods). Fortunately, when I yelled for help it turned out I was only a few yards from our campsite. However, it took a long time before I felt comfortable again.

          I was physically lost. I think Pat’s feeling of being lost goes much deeper. Pat becomes lost in her mind. When Lewy Body takes over, especially at night, Pat cannot remember the path of her being, of her soul. She becomes terrified as she searches for the core of herself, for her Patricia Potter-Efron. I believe that at these times Pat loses the continuity of having a core sense of self. No wonder she feels lost and terrified. That’s why I both held her close and reassured her as strongly as I could that I would protect her. I would help preserve her sense of self until she could reclaim it.

          I learned something about myself during this experience. The protector in me felt tenderly male, masculine. It wasn’t a learned role. It was far more primitive and genetic, the male who protects and provides for his woman and children. Perhaps this is the equivalent of many women’s genetic drive to have and succor children. All I know is that I felt something deep inside that made protecting Pat both necessary and wonderful.

Pat’s comments on “Being Lost is Not a Great experience.”

Pat to Ron: “Ron, this is beautiful.”

Ron to Pat: “What would you say about getting lost in your mind?”

          Pat: It doesn’t make sense to me about my core self being lost. I don’t know if it makes sense to write about that. You have to be careful.

Ron to Pat: “What about Ron as your protector?

          Pat: I can see it might feel good to Ron to be my protector. That feels good to me.

 

Ron’s Added Note: I think that “protector” may relate to “possessor” at that same deep genetic level. Perhaps that is one reason I have been reluctant to receive as much help caring for Pat as has been offered.        

Ch.85 Pat’s Younger Brother Kevin Just Died

February, 2021

          I heard the phone ring at 1 a.m. last Sunday night, three days ago. Then a message. Waking, I shuffled to the phone. The message: “Call Terri at [a nursing home] in Hudson, WI for information about a family member.” That had to be about Kevin, Pat’s 70 year old younger brother who had mysteriously disappeared two weeks before.

           Kevin is a loner who hates “mushy” stuff like sisters and brothers-in-law who profess their love for him. Not telling people that he was in trouble to avoid the mushiness was typical Kevin behavior. In the days before this call, the staff at the local restaurant he favors every day, his portable oxygen specialist, and many others had joined the search to locate Kevin and find out what was going on. Together, we gleaned bits of information, concluding that Kevin had called an ambulance, been first driven to a local hospital and then to a larger hospital in St. Paul, MN, received surgery there (But we didn’t know for what), and probably was then released to a recovery center. It was mostly guesswork, though, because Kevin had declined to be officially listed anywhere as a patient. Under current social service rules hospital operators could only say, truthfully enough, that “nobody with that name is on our roster of patients at this hospital.” All that was “Kevin being Kevin” and it would have been understandable, albeit frustrating, if he eventually got well and resumed contact. But he didn’t get well. You don’t receive calls at 1 a.m. to learn that your beloved is doing great. Kevin’s heart had abruptly ceased beating and refused to restart despite the strenuous efforts of a paramedic team.

          Pat and I hadn’t had to grieve for anyone since her diagnosis of Lewy Body. Not knowing how it would affect Pat, fearing she might disintegrate, I was uncertain whether to wake her immediately. But then I asked myself what I would have done if Pat didn’t have Lewy Body; the answer was that I’d wake her right away to share the shock and loss. So that is what I did, because one way not to let Lewy Body control our lives is to assume the best, in this case that Pat could handle this sad news without seriously decompensating.  It took a few minutes for Pat to comprehend the situation, of course, as it would for anyone being awakened so abruptly, but then she understood perfectly what I was telling her about Kevin.

          It’s been three days now since that call. Kevin has been buried after a brief virtual funeral today. I’ve noticed that Pat’s emotional response to Kevin’s death seems a little emotionally muted, not reacting as much as she might have in the past. The people in my caregiver support group tell me they have observed the same lessened emotional response with their partners. Lewy Body doesn’t take away a person’s ability to feel emotions but does seem to reduce the level of intensity.

          Pat and I have been supporting each other through this difficult situation. We both have lost a good man and a good brother.

 

Pat’s comments on Pat’s Younger Brother Kevin Just Died:

           I do think it was the right thing to do, waking me up right away [Ron: as against thinking Pat couldn’t handle the stress because she has Lewy Body].

          I’m not surprised Kevin avoided telling people what was going on with him. This is just another example of his distance from me.

         

Ch.86 Every Caregiver Needs an Overload Specialist

February, 2021.

          Our twice monthly Lewy Body support group met last week, and it was my turn to talk. I mentioned that I was feeling a great amount of stress: my brother in law’s unexpected death had created a rush of uncertainties and responsibilities; my digestive system was acting up; Pat and I seemed to be alternating rapidly between moments of intense caring and moments of frustration and anger. Even my horse’s huge water tank had frozen up in the recent mid-winter freeze (-25 degrees Fahrenheit), becoming a gigantic ice cube and forcing me to bring Lakota water by the bucketful. 

          Group members were concerned, and one person asked me if I had support. “Yes,” I told them. “I have my children, all of whom live close by, and friends. And I also have my overload specialist, my twin brother Don.”

          It turned out that several of the other group members also had an overload specialist, someone they knew they could and would call or see when they were in immediate danger of falling apart. You could say this person was one’s court of last resort. An overload specialist must be a person you trust completely, usually someone who will listen carefully, respond appropriately, give good suggestions when you need them, and stay quiet when all you want is someone to witness your pain.

          Don is my overload specialist. My identical twin. He lives in Canada, precluding regular physical contact, but we email, text or call each other several times a week. Given our genetic link, I feel he can understand me better than anyone; He knows how I feel because he would feel just about the same in similar circumstances. This is true even though he has not lived with Lewy Body. I did call Don after Kevin died. I needed to call Don. He was there for me as I knew he would be.

          Another member of my caregiver group, whom I will call Emily, described her overload specialist (Sarah) as a good friend who she has known since high school. Recently, when Emily’s partner who has Lewy Body became aggressive, Emily called Sarah, not so much for advice as for deep comfort. Emily said that she was Sarah’s overload specialist as well. Perhaps that’s the norm, two persons sharing a mutually trusting relationship. That’s certainly the case with Don and me.

          Pat, too, qualifies as my overload specialist. And I hope I am hers. But there are times when I simply need to talk with my brother, especially those times when dealing with the stress that Lewy Body brings to our marriage.

 

Pat’s comments on Every Caregiver Needs an Overload Specialist

          I’m OK with you needing an overload specialist and Don’s a wonderful person to be that. I know Don loves you, so I really trust him when you talk with him.

          It’s nice when I can be that [an overload specialist], but I can’t always.

          Ron is my overload specialist.

 

Ch.87 Pat Tells Us that She is in Charge

March 2021

          Pat’s brother Kevin died almost two weeks ago. Kevin lived in the old family home that he and Pat co-owned. Now the property belongs to Pat. It’s hers to keep or sell.

          Unfortunately, Kevin was a hoarder. Every room in the house is filled with clutter, mostly junk like dozens of take-home foam coffee cups, thousands of pieces of mail, broken gadgets, etc. There are also kernels of important items like Kevin’s will, an entire set of flooring materials, money, family pictures, and the like scattered amongst the chaff. We’re talking hundreds of hours of house cleaning and repair to make the place presentable, much less salable. We’ve already begun that task; it’s one of those “the more you do the more you realize you need to do” situations.

          One more detail: the house sits on a riverbank high above the beautiful St. Croix River, making it a prized commodity. It would sell quickly, as is, even with all the clutter, to some wealthy person who could tear down the house and rebuild on its “footprint.”

          Last Sunday, we were discussing what to do about the house on our weekly family zoom session when Pat broke in, to state firmly that “I am in charge.” I think she means two things: 1) Pat will make the final decision on whether to sell it immediately or keep it in the family for a few more years; 2) She wants to be consulted before we throw things away or make repairs.

          My first emotional reaction to Pat’s statement was annoyance. We always work as a couple, don’t we? Why now are you saying “I” when you could say “We” will decide what to do? Also, it will slow down the cleaning process significantly if people have to run every “keep or throw” decision by her. It would be better if Pat could just trust each of her family members to make reasonable decisions on their own.

          My second emotional reaction was joy. Over the last three years Lewy Body has stolen some of Pat’s energy and left her listless. Pat has also told me that she frequently feels she isn’t contributing to the world because of her physical limitations. But now she is claiming her right to make a significant decision about keeping or selling the house as well as the right to orchestrate the cleanup process. I can hear Oprah Winfrey in the background chanting “Go for it, girl, go for it.” Don’t let others make decisions for you. Be strong. Stay involved. Take responsibility.

          I can live with that.

 

Pat’s comments on “I’m in Charge.”

          I don’t think everyone in the family can make reasonable decisions about keeping or throwing away things.

          I know the first thing I mentioned was the problem with the curtains in the living room and nobody even looked at them. I have some ideas about how to fix them.

          I say “I” because if I say “we” then everybody thinks they have the main say. If there are important decisions to be made, I should be part of that.

          There are pieces of furniture that people have talked about saving or keeping, and mostly I agree, but they need to run it by me.

 

 

 

Ch.88 Why Is It So Hard for Pat to Make Choices?

March, 2021

          Gee, I thought, we seem to be watching an awful lot of television today. What else could we do? One good possibility seemed to be drawing with colored pencils, an activity we’ve enjoyed in the past. We own many “adult” coloring books with interesting and challenging pictures just waiting to be selected.  Pat agreed that it would be fun to color together. Excited, I rushed to the cupboard to gather supplies.                That’s when I made a big mistake. I Loaded up five coloring books and three packs of pencils.  “OK, hon,” I said, “just pick a picture and we can get started.” Twenty minutes later Pat was still looking through the books. She couldn’t decide which picture to draw. Pat became discouraged and began looking tired, as if the very act of trying to choose was exhausting her. So, instead of drawing Pat took a nap.

           Since Pat developed Lewy Body this diminished ability to decide has become quite noticeable. Frequently she responds to what seem to me to be simple choices (“Which show do you want to watch?” “Would you like hamburgers or pizza for supper?” “Where would you like us to drive today?”) with “I don’t know.” I’m not attributing this behavior entirely to Lewy Body, though. Pat has always been slow to make choices; for instance, when we order food at a drive-through restaurant she wants to study all the possibilities and then decide, and she seldom knows in advance what she wants to order. But Pat’s indecisiveness has definitely increased with Lewy Body. There is a significant difference between her previous “Give me time to decide” and the current “I can’t decide” or “I don’t know.”

          I do worry about this trend. Making choices is a big part of being human. And most choices we make are small ones, just like the examples above. I don’t like the way Lewy Body appears to be diminishing Pat’s choice-making ability.

 

Pat’s Comments on Why Is It So Hard for Pat to Make Choices?

          My first comment is because I have Lewy Body and I may be less decisive, what does that mean? It might be changing how I make choices but diminishing my ability to make choices may not be the best way to express it. Just give me time to decide. Take it slow.

          I don’t think Ron is right. I don’t think it’s harder for me to make decisions than it used to be.

 

 

Ch.89 Frustration! Pat Objects to Taking an Important Medicine

          You probably know, if you are dealing with Lewy Body, that digestive problems are common. In Pat’s case this has meant frequent bouts of diarrhea (This is embarrassing to discuss and that’s probably why I seldom read about it in the Lewy Body literature). We thought these episodes might be connected to her diabetic medicines, or maybe loss of appetite and weight, or perhaps excess coffee drinking, or who knows what? It’s been a struggle.

          But then Pat had an appointment with a gastrointestinal specialist who suggested we try a powder, specifically cholestyramine, that reduces bile production from the gall bladder or improves reabsorption of the bile from the intestines. Bile acid malabsorption could be the source of Pat’s digestive problems, she suggested. Try the cholestyramine for a few days and you’ll find out very quickly if it works. So that’s what we did, and it worked! All I had to do was mix a small scoop of the powder into a glass of orange juice every day and give it to Pat to consume. Incredibly, her digestive issues disappeared. What a relief!

          All went well for a week or so. But then Pat began slowing down

over a period of several days. The orange juice didn’t care. It sat there patiently waiting. I cared. I sat there impatiently waiting. “Aren’t you going to drink your juice?” I asked. “Don’t tell me what to do!” she replied. From Pat’s perspective I was ordering her around again. And Pat does not like taking orders. She is very good at non-compliance. Yesterday she wouldn’t even let me pour the juice, much less drink it.

          So, here’s my problem. This medicine works. If Pat will keep taking it our lives will be better, much better. If the stakes weren’t so high, I would just drop the subject. But this is a significant quality of life issue for both of us.

          If I keep pushing, Pat will become more and more resistant. If I shut up, she will almost certainly suffer more and more bouts of diarrhea. Perhaps the best approach for now is to ask her if she wants to take the medicine/juice today and accept her answer, whatever it might be, without trying to convince her of its value.

 

Pat’s comments on Frustration! Pat Objects to Taking an Important Medicine.

          I don’t think that the compound of things makes my life more viable that I should go through with it.

Ron to Pat: Do you mean it’s not worth the trouble?

Pat: No, I meant that taking it or not taking it didn’t make a difference.

 

Ch.90 Pat and I Go Shopping Together for the First Time in a Year

          March, 2021

          Pat and I have finally been vaccinated against Covid-19. Suddenly, everything is changing. Possibilities that have been closed off for almost a year are re-emerging. Yesterday we went into a grocery store together and filled up an entire cart. Actually, we do it this way: 1) Ron guides Pat into the store in her wheelchair, which she only needs when she would have to walk long distances; 2) Pat places a small shopping box on her lap; 3) we travel down the aisles, putting our choices into that box until it is full of groceries; 4) Ron grabs a regular cart and transfers the groceries into it; 5) Ron pushes Pat into the next aisle, leaving the cart behind; 6) periodically Ron returns to the cart and catches up to Pat; 7) eventually we complete our shopping and Ron goes  through the check-out lane while Pat waits; 8) Ron takes Pat back to the car; 9) Ron retrieves our groceries. (If you think this is complicated, try taking a person in a wheelchair and a couple suitcases through an airport!). And then we celebrate a job well done together.

          Why haven’t we gone grocery shopping like this for a year? Because Pat has several significant health issues and would be considered “fragile” by the medical community, we have chosen to be very cautious during the pandemic. We haven’t gone to any restaurants, not even our beloved Norske Nook; we have only seen our friends when we could meet with them outside last Fall; I’ve done almost all of our shopping in stores by myself. I believe we’ve made the right decision but now I realize it’s come at a huge cost, namely under-stimulation.

          I have noticed Pat’s increasing passivity over this last year. I understand that Lewy Body does this to people, making them less curious and adventurous. Those words never used to describe Pat, though. She has always been more challenge- and risk-taking than me. In fact, her “let’s give it a try” spirit has been one of her great gifts to me in our partnership. But I think the combination of Lewy Body and Covid-19 has gradually eroded Pat’s spirit of adventure. All too often now her answer to “Honey, what would you like to do?” is “I don’t know.” I think part of that response comes from Lewy Body and must be accepted. However, now that we are vaccinated and relatively safe from the plague, I hope that we can begin seeing friends again, shopping together, and going into rather than bypassing places on our daily drives like the Wise Nature Center. And, in doing so, I hope that Pat’s natural curiosity and spirit of adventure resurfaces.

          One thing I am certain of: it was a good idea to go into the store together. Pat told me she enjoyed our shopping, and I could see a little more sparkle in her eyes both during and after our trip.

 

Pat’s comments on Pat and I Go Shopping Together for the First Time in a Year:

          Ron to Pat: What did you like about shopping together?

          Pat: I got to pick out the products I wanted.

        Ron to Pat: Do you still have a spirit of adventure?

           Pat: Not really as much – because it’s just as likely you’ll say no, that’s the wrong way to do it or why don’t you do it the way I want you to do it.

          I see me diminishing the spontaneity of my choices.

          Example: You say you want me to try this orange juice [with medicine] first and then see what works. If I said no, it doesn’t feel or taste right, you’d say it was wrong. It has nothing to do with whether or not it has medicine in the product or not.

 

 

Ch.91 Are We Still on the Same Team?

March 2021

          The Lewy Body journey is a difficult one both for the affected individual and their care partner. However, I have felt all along that at least Pat and I are doing this together: sharing the challenges, communicating well, acting as a team. But lately our teamwork seems to be breaking down. Perhaps the best indicator is that each of us complains that the other is “yelling” at him or her. “Well, you started it.”  “No, you yelled at me first” is hardly the formula for good communication.

          Medication management has become difficult over the last few days. I’ll bring Pat’s morning or evening medications to her only for her to tell me that she’s already taken those medications, that I’d brought them to her earlier in the morning or evening and that she’s already consumed them. I disagree. She reaffirms her position. I tell her she’s wrong, feeling a sense of exasperation and probably showing it in my face and words. She raises her voice because she’s absolutely certain that she is right and is getting angry at my stubbornness. I ask her to take them anyway because when she misses her medications, she sometimes starts acting funny, at least on one occasion becoming delusional. Pat doesn’t remember any such incidents and perhaps she thinks I’m making them up just to trick her into taking the medications again. Sometimes Pat does take the medications, or not. Either way, we both feel rotten by the end of the argument.

          To make things worse, there is one medication that I think is essential for her to take to resolve some serious digestive problems. Unfortunately, Pat believes that same medication actually causes those particular issues. When her symptoms do occur I‘ve made the case for her to try the medication again. No good. It’s not going to happen, Pat says. And that is that. 

          I’m concerned about the medication issues. I’m bothered more, though, by the breakdown of communication between us. We seem to be losing trust in our team and trust in each other.

Pat’s comments on Are We Still on the Same Team?

          We have had more yelling in our arguments recently. Whether or not this is a function of not being on the same team or not I am not sure. I often feel frustrated and misunderstood. On the other hand, if I think about I can usually feel better about it.

 

 

Ch.92 Lewy Body Helps Pat Finds a Way to Honor her Deceased Brother

          Several days after Kevin died (a sudden heart attack) a package came for him in the mail. It was a pair of earrings. Very strange. Kevin was single and had no known girlfriend. But our daughter Cindy did a little research and discovered he did have one good non-intimate female friend, Michelle, who frequently ate lunch with him at Keys restaurant, the place where Kevin dined every noon. Cindy found Michelle’s phone number and we arranged to give Michelle her earrings the next time we went to Kevin’s, the coming Saturday.

          Pat is fully aware that Kevin died on February 21, 2021. And yet, he is still alive to her, in a way I cannot fully understand. She sometimes talks about him in the present tense (“What does Kevin think about us selling the old clothes in his closets?”).  I think Lewy Body blurs the boundaries between alive and dead and also between past and present. That’s not a bad thing, at least not now. It allows Pat to stay deeply connected with Kevin.

          Tonight, the Friday before we meet Michelle, Pat took great care in wrapping Kevin’s present for Michelle. Whereas Kevin would probably just have handed the jewelry box to Michelle, we wrapped, labelled, and put a bow on the box. Now this gift is coming from both Kevin and Pat. I imagine them smiling at each other as they hand the gift to Michelle.

          I’ve heard stories about how painful it can be for caregivers to repeatedly remind the Lewy Body individual that a loved one has passed. But now I wonder if sometimes the caregivers were working too hard at bringing their person back into reality instead of exploring the new kind of reality created by Lewy Body. 

Added Note: Things seldom go as planned. When we got to the store to deliver Kevin’s gift, we discovered that Michelle had taken ill and wasn’t there that day. We were disappointed. But I’m positive that we will make the connection eventually.

 

Comments by Pat about Pat Finds a Way to Honor her Deceased Brother:

          I think Lewy body blurring the boundaries between living and dying is not a bad thing.

          I was disappointed when Michelle became sick and wasn’t there to receive our present. But we will try again.

          [Ron to Pat] “What does it mean to you to give Kevin’s gift to Michelle? 

          [Pat to Ron]: It means I’m happy to include her in our relationship to each other.

 

Ch.93 Spring Colors and the Lewy Body Lifestyle.

April, 2021.

          Spring colors! Silver-green new wisps of leaves sliding down Willow branches; Yellow-green Birch leaflets; red-brown sandstone boulders newly fallen during winter and only visible now that the snow has melted; red and brown leaf buds and coverings from Red Maples and many other trees; bright yellow daffodils by the sides of the roads; dark green evergreen needles and leaves dominating the hillsides; newly turned black soil in farm fields ready for planting; grey, muddy skies bringing badly needed rain to end a long dry spell; white sheets drying in the wind as we drive through an Amish community on Monday washing day. SPRING COLOR EVERYWHERE.

          I have never seen spring colors before, even though I am almost 77 years old. I mean really seen them as against unconsciously driving through them while concentrating on reaching whatever destination seemed important enough to get there as quickly as possible. Even after I retired from our counseling business, I still kept moving too fast to notice the world around me. But now, thanks at least partly to Lewy Body, or more specifically to the changes Lewy Body has created in our shared lifestyle, I have finally noticed, and been awed by, spring colors.

          Simple observation: You have to drive slow to see spring colors. 25 miles per hour slow. Spring colors are subtle and gentle. They don’t demand to be seen like autumn colors. They only invite your attention, as if they were a little shy. 

          Lewy Body has changed the pace of my life, Pat’s life, our life together. We don’t do anything fast anymore. Our new lifestyle centers around the need to take things one at a time, pay attention to small details, be flexible and patient about schedules and goals, and, above all, to be grateful for every day we have together. Our new motto could be when in doubt, do less, but totally engage in whatever you are doing.

So now I drive through the hills at 25 miles per hour and that’s starting to feel a little too fast. I’ve become a 7-days a week Sunday driver. Fortunately, we live in a rural area. On a good day I’ll only have to pull over once or twice to let other drivers speed by. I don’t think many of those drivers notice the spring colors. Perhaps they do slow down on occasion, though. I hope so. 

          I seldom think grateful thoughts about Lewy Body. It’s a nasty affliction. But I do appreciate the positive aspects associated with the new lifestyle Lewy Body has created for us.

 

Pat’s comments on Spring Colors and the Lewy Body Lifestyle:

          Ron, your talking about Spring colors brings them closer to me. I notice them now more than I used to. I like them; it’s a comfortable feeling.

          Ron to Pat: “What do you think about our slowing down due to Lewy Body?

          Pat to Ron: I don’t think about it much. I’m happy with it.

Ch.94 Pat Outwits a Would-be Seducer

          April 2021

          It’s evening and Pat and I are having a nice talk. “I want to tell you something strange that happened this morning,” she tells me. “A man was in my bed and he wanted to make love with me. He said he was Ron, but I didn’t believe him. So, I didn’t respond, and he went away.” “Besides,” she added, “he wasn’t very attractive.” 

          That frustrated and inept suitor was none other than me, the one and only real Ron. But not to Pat. To her, that man was a liar, phony, and cheat. I did sense that something felt wrong when she turned me down in a rather chilly manner. But I did not realize she thought I was an imposter.

          Life with Lewy Body can be complicated. For example, how would you reply to Pat’s portrayal of that morning’s incident? “Hey, that was me!” or “What do you mean he wasn’t attractive?” or maybe “Now that I’m here would you like to make love?” I know from the literature and past experience that it’s not effective to challenge a Lewy Body interpretation since the person with Lewy Body will insist they are right and that they are not having a delusion. Besides, what good would it do? I chose to agree with Pat that she had made a good choice not to make love that morning because it didn’t feel right to her.

          As my son Joshua says, “it’s all good.” 

 

Pat’s comments on Pat Outwits a Seducer:

          I was astounded when I read this [What Ron wrote]. It doesn’t bother me. I’m OK with it. Everybody is a little off sometimes and I’m a little off a lot of times. No damage done.

 

 

Ch.95 Ron Reminds Pat of her Accomplishments

          May, 2021.

          Pat and I were chatting this morning when I mentioned that her contributions to our Lewy Body book (and dialogue) were quite good.  I particularly appreciate how she uses short, pithy statements such as “Everybody is a little off sometimes and I’m a little off a lot of times,” which she said in the last chapter. What an excellent way to state how Lewy Body can mess up a person’s day to day choices and actions but doesn’t necessarily do much damage. I mentioned that she had demonstrated the same skills in the previous books we had written together.

          “What books?” Pat asked.

          Pat had forgotten, at that moment, that she was co-author of Letting Go of Shame and of Letting Go of Anger, both positively reviewed books that have sold well. She is sometimes even a little shaky about her contribution to our Lewy Body Dialogue. A couple days ago she picked it up and began reading it, almost as if it were completely new to her. She understood that she was its co-author, I think, but perhaps it didn’t feel to her like it belonged to her.

          I worry about Pat’s memory loss, of course. Memory loss doesn’t always accompany the other Lewy Body symptoms, but I have seen Pat becoming much more forgetful now than before her diagnosis. But today what bothered me most was that if Pat couldn’t remember she had written these books, then she also couldn’t recognize how helpful they had been to many, many people; nor could she take healthy pride in her accomplishments.

          So let me list a few of her other successes here: Pat is a national Merit Scholar; she has a Master’s Degree in Guidance and Counseling; Pat was an incredibly creative, empathic and daring therapist; and Pat opened my eyes to a whole world beyond academics because of the wide range of her interests. She also raised three wonderful children who now, as middle-age adults, are gladly returning her love and care. 

          And here is my promise: I will always be proud of who you are, Pat, of what you have accomplished in this world we share, and of the caring, loving human being you are.

 

Pat’s comments on Ron Reminds Pat of her Accomplishments:

          I know what those accomplishments are and I think I have accomplished a lot. I haven’t forgotten what I’ve accomplished.

Ron to Pat: What things that you have done are you most proud of?

          Pat: That gets all mixed up.

Ron to Pat: OK, that was too complicated. Can you tell me one thing you are proud of?

          Pat: That I’m a really good therapist.

         

 

 

Ch.96 Ron and Don Discuss their Roles with their Wives

          May 2021

          One of the Greek philosophers thought that humans could be divided into four elemental categories: fire, water, air and earth. Each element had special characteristics; each had its own strengths but also weaknesses.

          My identical twin brother Don and I call each other about once a week. This evening we discussed our roles in our marriages and families. We soon realized that we share a similar characteristic: our central element is definitely earth. That means we stay grounded, especially in crisis situations or during periods of adversity. That makes us good caregivers. I’m uncertain which elements our wives, Pat and Randa, would select as primary for themselves. I’d say that Pat is mostly water (healing) and air (creative), with a little fire thrown in from time to time.

          Right now, Don and I need to stay grounded. Pat, of course, has Lewy Body, and one of the main aspects of Lewy Body is unpredictability. Pat needs me to stay firmly in reality when she becomes confused, and she needs me to keep our daily routines intact. Meanwhile, two of Randa’s children have serious physical or situational concerns, tapping her energy; she needs Don to help steady her when she becomes a little shaky.

          I have often been told that I should get more help, that I should get more rest, that I need to take more breaks from the caregiving role. The trouble is that earth is supposed to stay stable. Ground should not shake. Caving in is strictly forbidden.

          However, occasionally Don or I suffer earthquakes. They may be physical. For instance, Don has had a couple cancer and stroke scares while I had a heart stent two years ago. They also may be mental; small tremors that manifest themselves in the form of brief anxiety attacks and larger ones felt more deeply inside when we find ourselves close to exhaustion (but sometimes hiding that fact from ourselves as well as from others). I am attempting to recognize these tremors and act upon them accordingly by asking for help and taking more breaks. It is not easy, though. I feel that I belong with Pat, giving her support and stability. That’s when I sense that I am doing what I have been put on this planet to do.

 

Pat’s comments on Ron and Don Compare their Roles in their Families:

           I think Ron is right in how he describes me – mostly water and air with a little fire. I think Ron’s description of himself is very real. I don’t know what I’d do without your earth. Your earth helps me hang onto my own earthiness. I am earthy too.

 

Ch.97 Pat Eats Little but Seems Unconcerned

          May 2021

          One-half piece of cake; four apple slices; about six bites of pork stir fry. That is what Pat ate all day yesterday.

          Many people with Lewy Body lose weight. They just don’t care to eat, except for sweets. For example, one woman in my care partners group reported that her 6-foot plus husband was down to 140 pounds. Pat, too, has steadily lost weight; she is at least 50 pounds lighter than before she developed this disease. She is not yet in danger of literal starvation, but she is steadily moving in that direction.

          Pat also has become choosy about what she consumes. Lately she has decided that she doesn’t like meals with tomato in them such as spaghetti. That makes meal preparation more difficult. I want to make things she likes so she will eat a little more. But, except for her all-time favorite, cheeseburgers, I cannot be sure she will eat what I cook.

          I’ve tried giving Pat one of the high protein drinks (like Ensure). She liked them but they increased her digestive problems. I think I will ask Pat if she wants to try them again, though. She certainly could use the calories and vitamins and minerals they contain.

          Pat seems far less concerned than I am about her weight loss. She feels more attractive now at her lower weight. She tells me she eats when she is hungry, that she isn’t starving and that she is generally satisfied with the meals I prepare. She does say she wants to maintain her current weight, although I doubt she can do so unless she eats more.

          Pat has also become physically weaker, making it harder for her to walk around the house or from the car into a restaurant or other places. I suspect her eating so little may be partly the cause for this loss of energy, and that adds to my concern.

          I guess this is another situation in which I, as Pat’s care partner, worries about a problem that Pat, the person with Lewy Body, doesn’t believe is a problem.

 

Pat’s comments on Pat Eats Little but Seems Unconcerned:

          I‘m not concerned. I think I am eating enough. I want to lose weight.

 

         

 

Ch.98 Ron has a Panic Attack and Pat has a Urinary Tract Infection

June, 2021

          Pat began getting weaker about three weeks ago. A little at first, then more. About one week ago I began lifting her out of bed and from the car. She just didn’t have any energy. We were still doing ok, though, until, suddenly, “the center did not hold.”

          First, my lower back began hurting. Then Pat couldn’t get up in the morning for our monthly St.Paul area support group zoom meeting. In fact, she slept 16 hours straight. And then, in the middle of the meeting that I was attending alone, I sensed a panic attack developing. Soon, I was in bed next to Pat, shaking in dread, while she told me she loved me and tried to comfort me even in her weakness. I realized I/we needed immediate assistance, so I called my daughter Jenny; she arrived at our home within a half-hour from her place in Eau Claire. I found it quite astounding that the instant she said she was on her way I felt my panic attack begin to ebb.

          Jenny pretty much took charge. She had me call Pat’s doctor’s nurse, who advised we escort Pat immediately to the Eau Claire Mayo Clinic Hospital Emergency Room. Surprisingly, Pat made no objection, which confirmed that she was really, really sick. Within an hour at the hospital Pat was diagnosed with a urinary tract infection and a “critically low” magnesium level.

          I’m writing this essay the next morning from home. Jenny is staying with Pat this morning while I will visit this afternoon. Pat is doing considerably better already, to the point she’s wanting to get out of the hospital. Probably, though, she will need a few more days in the hospital or a rehabilitation center to recover.

          I have now realized the limit of how long I can continue to maintain our current living arrangement. If Pat were to need me regularly to lift her from bed or the car, I could easily redevelop sciatic pain in my lower back and legs (I had a severe episode several years ago that almost resulted in surgery). Then we would both be in trouble.

           I never thought I was a superhero or impregnable, but I had hoped I wouldn’t need to address these limits for a few more years, until I reached 80 years old. So much for that theory. Now I need to get more serious about checking out ways to protect my body (lifting lessons might be useful for the hopefully occasional situation where Pat would need help) and we need to find better ways for Pat to get in and out of bed and cars. At a deeper level, though, we also need to look at moving into one of our children’s homes and we also need to check out assisted living or memory care centers availability to get on one or more waiting lists. We have both held off on these organizations way too long, but it’s certainly time now to prepare for a worst-case scenario.

          These are painful thoughts. BUT Pat is getting better, I planted our raised bed with flowers early this morning, and we are still a team.

Pat’s comments on Ron has a Panic Attack and Pat has a Urinary Tract Infection.

          I don’t remember Ron having a panic attack.

          I know you can’t keep lifting me forever.

          All in all, I feel pleased. I wasn’t at the time but I am now.

 

Ch.99 We’re Ready to Accept Help.

          June 2021

          Pat came home today. She’s only partially recovered from her urinary tract infection, though, meaning she is still physically weak and a little confused. In the past her coming home would have meant we were now back on our own. Not this time, though. Tomorrow we have an appointment with a home health specialist; she will arrange for a physical therapist, an occupational therapist and possibly a nurse to come here regularly.

          Pat and I might have grudgingly accepted such help before, feeling more invaded and imposed upon than nurtured. However, I think we both realize that we do need this kind of help, as well as active support from our children, to be able to continue living at home. Hopefully, physical therapy will help Pat gain strength and mobility while the occupational therapist might offer some good ways for us to increase home safety. And I will certainly feel less anxious to the extent these goals are realized.

          Up to now I have recognized “logically” we could use help and that we didn’t have to do everything ourselves. But now I feel this need for help. I don’t want help, I need help. This need feels guttural, emotional, physical. The miracle is that help is there; in fact, it’s been available for quite a while if I (or we) would have accepted it.

          I suspect that many Lewy Body individuals, couples and families have gone through this process from resisting help to grudgingly accepting help to gratefully accepting help. It is quite an emotional journey.

 

Pat’s comments on “We’re ready to Accept Help.”

          I am ready to accept help, given that people have indicated that they want to help.

Ch.100 Twenty-Four Hours of Chaos

          June 8, 2021

          10:00 A.M.  Pat and I cuddle quietly in bed. Everything seems ok. A time of gentle connection.

          11:00 A.M. Time to get Pat out of bed. But she is terribly weak. I mostly have to lift her out and steer her to the bathroom.

          11:15 A.M. Pat falls trying to leave the bathroom. I am standing right next to her, but it happens so suddenly I cannot reach to hold her. Pat is uninjured but it takes about 15 minutes for me to be able to lift her back onto her feet and help her to her chair in the living room.

          1:00 P.M. Paul, her new physical therapist, arrives for Pat’s first p.t. session. He asks her to stand with his help only to realize that Pat cannot stand at all on her own. Paul looks amazed and declares clearly that Pat is too weak for physical therapy. He very professionally questions the wisdom of her being discharged to home. By now I am certain Pat should have been sent to a rehab facility. (But later, my daughter Jenny tells me she had seen Pat doing much better at the hospital when she was tested there in a physical therapy session). Paul leaves telling me he will consult with his team about what to do.

2:00 P.M. Pat falls asleep in her chair and continues to rest and nap the rest of the afternoon.

5:00 p.m. I am at the stove preparing dinner when Pat suddenly appears, talking rapidly about something she has to do outside at another house. She is walking well, without even her cane. Then she heads toward the stairs to leave the house. For the first time I have to physically restrain her. Pat becomes furious with me. She retreats to our bedroom, telling me to stay away and not to touch her.

          I understand that rapid fluctuation is the distinctive mark of Lewy Body. But come on! I cannot handle these extremes. How can my wife be too weak to stand at 1 p.m. and dangerously energized a few hours later? What is happening here? I feel lost and scared.

           I can’t keep Pat safe, and neither can she. What will we do?

June 9, 2021.

10:00 A.M. I’ve asked my daughter Jenny to come out in the morning to help assess the situation. Together, we try to help Pat out of bed. It is not possible. Pat is back to being physically helpless and exhausted. Jenny and I decide to call an ambulance.

Three days later.  As I write this passage, Pat is still in the hospital awaiting transfer to a local assisted living and memory care facility. I don’t know what looms ahead. Perhaps Pat will return home in due course, strengthened enough to stand and walk; maybe not and we will have to live apart. I don’t want that to happen, not at all, and neither does Pat. However, we may just have to adjust.

          The words that go through my head are these: We are still a team, wherever we may reside.

Pat’s comments on Twenty-Four Hours of Chaos:  I don’t remember what happened.

Ron to Pat: How do you feel about being physically apart?

Pat: I experience that as a whole as kind of a negative thing – because we both are seeing something that isn’t working right or might not be working right.

 

Ch.101 The Transition to Assisted Living was Going Well – Until the 

           Fire Alarm Went Off  

           June 13, 2021

          Pat has been hospitalized for the last 5 days because she is too weak to come home. She is recovering slowly from a urinary tract infection. Yesterday she transferred to an assisted living facility not too far from our home. I’ll call it Peaceful Life Assisted Living Center. The transition had been going smoothly; The staff seemed friendly and competent, although there weren’t many of them; Pat seemed comfortable in her new room; the place was pretty quiet, except for one woman patient who kept yelling for help. My son Joshua was here to keep us both company. We all felt good about the place.

          And then the fire alarm went off. The decibel level in Pat’s room was rock concert loud. The staff could not shut down the alarm because nobody knew the correct code. Eventually the police were called as well as an electrician. But by then we had loaded Pat into her wheelchair and taken her outside.  We stayed outside for maybe 30 minutes, with Pat occasionally saying things like “I’m not going back in there.”

          A little later, after I went home to feed the animals, I received a call from Joshua. He had just learned that the fire alarm had shut off the kitchen oven, so the staff couldn’t offer Pat a hot meal. I heated up a tv dinner and brought it to her.

          The evening went much better. Pat and I watched the same show on tv that we would have selected at home. The loud lady was taken to a hospital where she could get the help she needed. Finally, after the show, Pat was given her medications and assisted into bed.

          I admire the positive approach Pat has taken to coming to an assisted living facility. She isn’t complaining. She understands why she’s here and she knows that the primary goal is to get her home. Pat has lifted my spirits the last few days, keeping me from becoming overwhelmed with sadness and anxiety.

          I just hope we get her back home.

Pat’s comments on The Transition to Assisted Living was Going Well – Until the Fire Alarm Went Off:

          That’s wonderful, Ron’s hope that he can get me back home. I’m pretty hopeful. I see myself getting better.

 

 

Ch. 102 Signs of Hope: The Second and Third Days at the Assisted Living Center

          Second Day. Nothing went right. Pat usually takes her morning medicines around 11:00 a.m. at home. But the Peaceful Life center staff members had to abide by state regulations stating that morning meds must be completed by 10:00 a.m. or they must be skipped entirely. Pat refused to take them during that time frame. I’ve noticed that the few times Pat didn’t take her meds at home, usually because I forgot to bring them to her, confusion would soon set in. And that’s what happened on this occasion. By 5 p.m. Pat refused supper and then became very angry with me for not taking her home. Irate, she stood up 5 times from her wheelchair. The fifth time Pat fell and had to be helped back to bed.

          Third day. Today everything that went poorly yesterday went well today. Pat did take her medicines on time (and the center Director is switching the time she can take them to a later slot). My daughter Cindy told me that Pat was able to walk farther down the hall than yesterday, and she stayed in a good mood the entire day. Pat is eating better as well.

          I am gaining hope that Pat will be able to come home. Until now I haven’t dared think that way, fearing how disappointed I would be if she could not return. I do expect setbacks, though. Achieving physical recovery from a serious problem is seldom a smooth and linear process. But Pat seems to be regaining both her strength and her thinking ability. I feel cautiously optimistic. That’s a definite upgrade.

 

Pat’s comments on Signs of Hope: The Second and Third Days at the Assisted Living Center:

          I think that’s right [about being more hopeful Pat will return home].

 

Ch.103 Pat Tells Me How She is Growing

          June 2021.

          Today I took Pat for a wheelchair walk from Peaceful Life assisted living facility where she is currently residing to a pavilion at a nearby lake. Pat sat in the sun and I in the shade while our collie Levi wandered about. We were there over two hours, but Pat hardly moved. I wondered what she was thinking (or if Lewy Body was keeping her from thinking at all). We didn’t talk.

          Later that night I returned to the facility to tuck Pat in for the night [Side note: It is not all bad that Pat is away from home. Now I can give her all my love without taking nearly as much responsibility for keeping her well and safe]. I brought her a peach. And then Pat began to talk, speaking clearly and coherently. It was as if Lewy Body had taken the evening off.

          Pat told me that she was still growing as a person. In particular, she was becoming more content. Spending all that time at the lake, just being, was an example. She wasn’t doing anything, but she told me she was acutely aware of the sounds and sights and the feel of the breeze around her. She was simply completely there.

          Several years ago, I wrote a book entitled Being, Belonging and Doing. The idea was to balance one’s awareness of self with connecting with others and with meaningful activity. I’ve always been a doer and I’ve learned over time how to belong, but I’m not very good at simply being. Pat showed me today what it means to be for the sake of being.

 

Pat’s comments on Pat Tells Me How She is Growing:

          I do feel like I am growing. I will say I’m getting more clear on what I’m doing. I’m getting more clear on what I want and do not want. I’m expressing that a little more to Ron. I am growing more content.

 

Ch.104 Pat Returns to the Hospital

June 29, 2021

10:00 a.m. “Ron, Pat fell out of bed and is floating in and out of awareness. We’ve called an ambulance.”

11:00 a.m. Pat, my daughter Cindy, and I are at the emergency room of the Mayo Hospital in Osseo, WI. Pat says she doesn’t hurt anywhere. But she’s very weak. The doctor decides to take a urine sample. Positive. Pat has another urinary tract infection, the second in one month. She needs to be admitted to the hospital, but they have no openings. She may have to be transported many miles from here because every hospital nearby is full.

2:00 p.m.  Surprising news. The discharge people at Osseo have found an opening for Pat at the Mayo Hospital in Eau Claire. That’s as good as we could hope for, since it’s the largest and best staffed hospital in this region.

3:00 p.m.  Pat’s been driven by ambulance to Eau Claire. We meet Dr.           

Barusya, who is a hospitalist, which means he specializes in treating extremely sick people at the hospital. Hospitalists don’t have non-hospitalized patients, so they do not have to split their attention between outpatients and inpatients. I feel relieved, knowing Pat will receive good and consistent care.

          Mayo’s current Covid policy is that only two people are allowed to see Pat. This evening I am joined first by Cindy and then by Joshua. We don’t realize that the two allotted slots cannot be rotated. Fortunately for us, though, nobody intervenes, so both children have a chance to see Pat.

 

June 30, 2021

10:00 a.m.  I ask the staff to allow Jenny, my other daughter, to be substituted for Joshua, who visited Pat last night. That’s when we learn about the “two and only the same two” policy. Fortunately, they allow Jenny to be named the second visitor. Jenny works part time and can come here almost every day, whereas Cindy lives almost 100 miles away and Joshua has a full time and quite demanding job. Jenny gets here around 3 p.m. I could go home now. I should go home. I decide to stay a little longer, though.

          Pat is sleepy in the way really sick people are sleepy: sometimes she doesn’t respond to me at all, while at other times she seems half-awake. Sometimes she seems weary beyond words. I’m starting to feel that way myself. Depression and despair are creeping in.

 

4:00 p.m. Bad news. Dr. Barusya informs us that Pat’s urinary tract infection is caused by treatment resistant bacteria, not e coli but enterobacter cloacae. He’ll know two things by tomorrow: 1) if the infection has gone into Pat’s blood stream (sepsis); 2) which drug or drugs will best attack the bacteria. I ask him if this infection could be fatal. His response, “not yet,” is not reassuring.

7:00 p.m. I’ve written my brothers, children, and friends, telling them what’s happening. I’ve talked with my twin brother Don and his wife Randa (they’ve already searched the internet for Enterobacter cloacae); I’ve had dinner; I’m watching the hockey and basketball playoffs. I’m feeling nothing at all. No emotion. Numb.

 

July 1, 2021

11:00 a.m. Relief! Dr. Barusya informs us that Pat’s bacteria actually is highly responsive to antibiotics and the infection hasn’t reached her bloodstream. Pat looks much better; she’s awake, alert, even a little hungry. Later in the day she responds better to physical therapy, although she still cannot stand on her own.

 

4:00 p.m. I’m home now and Jenny is with Pat. Jenny sends a message saying the plan is to discharge Pat tomorrow. “That’s not right,” I think, as I struggle to contain an immediate burst of anger. Pat is not strong enough to return safely to the assisted living center. I call Mayo and ask to speak with the doctor. In the meantime, I write out my concerns because I can state my case better and less emotionally when I’ve written down my thoughts. Soon Dr. Barusya calls, and we have a good, informative conversation. He seems to think Pat will immediately receive physical therapy at the assisted living center. I doubt that is a possibility, especially since we are approaching the July Fourth holiday. He agrees to wait until tomorrow to make a final decision in my presence.         I feel I’ve done a good job acting as Pat’s advocate. Sometimes I get too angry, acting out my anxiety; at other times I am too complacent and unquestioning. This time I believe I was firm but respectful. It takes discipline to advocate well.

 

July 2, 2021. 11:00 a.m.  Our saga continues. A new physical therapist named Beth arrives. Beth tries to help Pat get from bed to chair. Failing, she calls for another staffer and for a device that safely effects the transfer. Turning to me, she says the obvious: my wife is in no shape to return to the assisted living center. In fact, Beth recommends that Pat go to a rehab facility where she will receive physical and occupational therapy every day. Later, Dr. Barusya agrees. Now the only problem is that it is too late to get anything done on this Friday before the Fourth of July. The earliest we can hope to transfer Pat will be Monday.

          Amazingly, Pat is staying calm and positive throughout all this chaos. She smiles at me, tells me that she loves me, seems to understand what is going on and to agree with the plan. I wish I could say the same for myself. I  feel like I’m on a rowboat in swirling seas.

 

July 3, 2021

          The staff on the third floor discovered that today is our anniversary – We’ve now been married 56 years. The nurses made a “Happy Anniversary” poster, and they all sign their names to it. What a kind and thoughtful idea. We are both deeply appreciative.

          One ominous note: I see one bullous pemphigoid blister on Pat’s armpit. Bullous pemphigoid is a terrible auto-immune disorder that causes its victims to suffer long-lasting itchy and painful liquid-filled blisters. Pat had her first attack of this chronic condition last year. If it returns full blast we will be in serious trouble.

 

July 4, 2021

          The holiday is slowing things down. We can only wait for a referral to a rehab center. Pat’s mood is good, but I think her inactivity is decreasing her strength.

Pat’s comments on Pat Returns to the Hospital.

          Ron: “Pat, what do you think of your stay in the hospital?”

          Pat: “Not very good because I was sick.”

         Ron: “How hopeful are you about getting back home?

         Pat: “I’m fairly hopeful. I’m feeling myself getting stronger.”

Ch. 105 Pat is Transferred to a Rehab Center  

          July 9, 2021

          Pat has finally been transferred to a rehab center, a nursing home certified by medical assistance to provide physical therapy, occupational therapy, speech therapy and other services. She can stay here theoretically for up to 30 days, but Julie the social worker informs us that insurance probably will only pay for about 2-3 weeks. Hopefully, by then Pat will be strong enough to return to assisted living or even to come home. Today, her first day here, Pat has already received physical, occupational and speech therapy. A good start.

          July 16, 2021

          Well, Pat’s stay here didn’t last long. Our “advantage” insurance company decided that one week was quite enough time for Pat at the rehab facility, apparently because she was doing so well that she was ready to return to the assisted living place. This despite the fact that her bullous pemphigoid attack had limited the amount of therapy she could receive and that she still needed assistance to get in and out of bed.

          I am frustrated. Pat’s trying to get stronger but the very organizations that should be helping her are instead blocking her path. When I was counseling, my clients repeatedly told me this happened; I even tried on many occasions to help them extend benefits or be given a proper diagnosis. But now it’s happening to us and now I know how crummy it feels.

          Tomorrow we’re heading back to Peaceful Life. It’s a good place with good people. That’s about the most hopeful thought I can come up with right now.

Pat’s comments on Pat is Transferred to a Rehab Center

          Ron to Pat: “What do you think of this place?”

          Pat: It’s an OK place that I wound up in and I think that part of being here in that ok place was being in a different place first – the hospital.

Ch.106 Why Now? Pat has a Flare Up of her Auto-Immune Disease

          July 2021.

          Pat endured the first attack of bullous pemphigoid almost exactly one year ago. Bullous pemphigoid is an auto-immune disorder in which Pat’s own immune system attacks the cells that connect the upper two layers of the skin, the epidermis and dermis. The result is terribly itchy and painful rashes and fluid filled pouches called “blisters” on her legs and arms. Pat was prescribed the steroid prednisone which did eventually cause the disease to go into remission. Since then, Pat has been taking a weekly medicine to keep the bullous pemphigoid at bay.

          Last week at the hospital I noticed one blister on her armpit. And when I looked, I saw others scattered around her body. I sounded the alarm (This condition is so rare the nurses and attendants could not be expected to identify it). I asked them to apply a steroidal cream that helps dry up the blisters; fortunately, I had kept several tubes of the cream from the previous episode. But more blisters were developing and by the time Pat transferred to the rehab center she was in pain. Then the palms of her hands became red, and she went from being in pain to suffering. The rehab staff quickly arranged a zoom appointment with her dermatologist which took place today. Her weekly medication was increased, and more steroidal cream prescribed. (It would be dangerous at this time to try prednisone because it would make her even more vulnerable to infection and it raises blood sugar levels, so the doctor is holding that in reserve.) But last night she was tortured again by the pain in her hands. All I could do was to hold her and get the nurse to give her a couple Tylenol tablets. Just as the last time, I am feeling helpless to relieve her torment.

          Why now? Why, when Pat is fighting to regain her strength so she can return home, does she also have to face this awful disease? My whole being is screaming IT’S NOT FAIR!

          Rationally, I know that Pat’s urinary tract infections have greatly stressed her body and left her more vulnerable. That’s probably why the bullous pemphigoid has flared at this time. So what? It’s still not fair! I feel like a child hoping some adult will come along and make that bully go away. Just go away. And don’t come back!

          Meanwhile, Pat has mostly kept her composure. She’s still working with the physical therapists. I admire her ability to accept what is happening.

 

Pat’s comments on Why Now? Pat has a Flare Up of her Auto-Immune Disease.

          Ron to Pat: “What’s the worst thing about having bullous pemphigoid?

          Pat: You can’t run away from it. I think I am coping with it better than last time. I’m not sure it will ever be gone.

 

 

Ch.107 Disheartening Morning; Somber Afternoon; Beautiful Evening

July 2021

Disheartening Morning. Pat is back at Peaceful Life Assisted Living. Today she was scheduled to receive an evaluation for physical therapy from her previous provider. Unfortunately, Pat was extremely weak today; she also was not tracking well or able to follow commands. The evaluators did schedule Pat for twice weekly physical therapy sessions, but they told me that people with Pat’s current level of disability may not be able to improve enough to go home safely. They didn’t say never, so I am holding onto hope. But realistically I knew I needed to find a pathway to accept this unanticipated situation.

Somber afternoon. I did find a path this afternoon. It went through grief. I called my brother Don and cried. I talked about what it feels like to be alone in our house; I’m not exactly lonely, since I am spending about 6-7 hours every day with Pat, but when I am home, I have an uncomfortable feeling that something is missing, a sense of incompleteness. Still, by the end of our conversation, and then a little later after a talk with my daughter Cindy, I was less tearful. I felt like I was ready to go on with life.

Beautiful Evening. I spent this evening with Pat. I found her shaking with cold in the dining hall and rushed to bring Pat’s weighted blanket to her. Then we went for a wheelchair walk and admired the tall trees in the neighborhood; we both felt small in their presence. After that I helped Pat eat her first meal of the day: a banana, blueberries, and a piece of white cake with vanilla frosting. And finally, we cuddled and kissed in her small bed, murmuring “I love you” to each other.

          Now, I am alone again, wondering about an awful day that turned wonderful. A Lewy Body day, yes, in its fluctuations, but perhaps the most demanding Lewy Body day we’ve experienced together.

Pat’s comments on Disheartening Morning; Somber Afternoon; Beautiful Evening:  My thought is that this is a difficult change for me – a mixed up way of finding out where we are supposed to be.

Ch.108 Instantaneous Transformation

          July 2021

          I’ve been with Pat for about two hours this morning. It has not been pleasant. Pat says she is in a lot of pain; her hands are still blistering from the bullous pemphigoid attack but also her backside and other areas of her body are red and sore. She is just plain grumpy. Pat summarily rejects any attempt I make to distract her from her pain; I’m tempted to say good-bye and flee the scene. I reach down to pet Levi, our collie/golden retriever mix, if only for a minute’s relief. I look up and…

          Pat smiles at me. Warmly. Her eyes are shining brightly with love, not anger. She is not in pain. I don’t think she even remembers the last couple hours. Pat’s transformation is complete.

          We’ve written several times before about how Lewy Body creates these fluctuations. I’ve watched them happen many times before. But they astonish me every time. I cannot imagine instantly hurtling from totally grumpy to happy and serene, or the other way around. I sure cannot do that. I need minutes, sometimes hours to complete the transition from angry to content or vice versa; Pat routinely takes seconds, in either direction.

          If we were galactic objects, I would be a planet slowly rotating through predictable seasons. Pat would be a comet racing through space along an unpredictable orbit. The Lewy Body orbit.

 

Pat’s comments on Instantaneous Transformation:

Pat: I’m curious about how you know from one minute I’m feeling one way and the next few minutes I’m feeling the other way.

Ron: I can tell by your eyes and voice.

Pat:   I do change my emotions quickly, but not always the way you perceive them.

 

Ch.109  Pat Reads Nancy Drew to Ron

          Aug. 2021

          Finding things to do together has become challenging now that Pat has begun living at an assisted living center. Fortunately, recently we discovered a whole box full of Nancy Drew and Hardy Boys mysteries. Pat’s mother Norma apparently kept them all these years through her childhood, Pat’s childhood, and even our children’s childhoods. They are still in good condition.

          Pat has been considerably weakened by her two urinary tract infections (over now) and the recent, ongoing auto-immune system attack of bullous pemphigoid. Consequently, I offered to read a Nancy Drew mystery to her. She agreed and I read two chapters, realizing that the book was a lot more interesting and that the vocabulary in it was more sophisticated than I had anticipated. Pat closed her eyes and I wondered if she had fallen asleep. No, she assured me; she just wanted to hear the story without distraction.

          I continued to read another couple of chapters the next day, and then another two last night. Pat surprised me, though, this third time. After I concluded, she offered to read out loud. And she did, about five pages. Beautifully. Perfectly.

          I doubt that Pat could have read out loud yesterday. I know she couldn’t have done so two days ago. I hope she will be able to read out loud again tonight. But who knows? It’s always a guessing game with Lewy Body.

          I’ve learned to treasure gifts like these, periods when Pat is functioning at her best. Sometimes they bring me to tears. They are moments of wonder that I will remember forever.

Pat’s comments on Pat Reads Nancy Drew to Ron:

          I think it’s time and when you read something and really read it then you can remember it. I felt good reading Nancy Drew. We can do it again. I can help read it.

 

Ch. 109 Pat is Home with Me in My Heart

          August, 2021

           Yesterday the Home Health evaluator told us that since Pat hadn’t made any progress gaining strength or mobility he would have to discharge her from their physical therapy services. I couldn’t dispute his reasoning, although I don’t think the decision was quite fair. Pat has been sick with bullous pemphigoid the entire time he’s been coming. Still, the reality is that Pat has remained very weak, needing two persons to transfer her from bed to chair.

          I still hope Pat will return home. Maybe not in the next few weeks, but eventually. Meanwhile, I stay over on my side of our bed at night rather than claim the center; I drink coffee only from certain cups and never from her favorites; I feel vaguely guilty consuming Indian food because Pat doesn’t like its smell. Pat’s absence at home continues to feel temporary deep in my heart. I’m pretty sure it always will.

          I hope Pat knows that even though she is living for now at an assisted living center she is still living at home, with me.

Pat’s comments on Pat is Home with Me in My Heart:

     I’m glad I’m still in Ron’s heart at home.

     I’m glad that things are working out on the home front.

     I’m glad that you and he are getting along.

          Ron: Who do you mean when you say “he?” Pat: I don’t know.

 

 

Ch.110 McKenzie Maria McGillicutty: How to Have a Little Fun When It is Hard Finishing Your Sentences.

          Pat has been having more trouble finishing her sentences lately. Short sentences went well with no distortion, but confusion set in half-way through longer sentences and sometimes a word salad followed. I could tell Pat was distressed and frustrated. She wanted so badly to share her thoughts.

          That evening I read a couple chapters from a Hardy Boys mystery. (Reading Nancy Drew and the Hardy Boys seems to be replacing country drives as a daily structured activity). That inspired Pat’s creativity and suddenly we were developing our own story line.

          First the name of the lead character: I suggested McKenzie Brown. Pat said Brown was too short. Stevenson? Nope. McGillicutty? Yes. And let’s add a middle name: Maria.

 So, what does Mckenzie Maria McGillcutty do? I asked Pat.

          She is a performer.

What does she perform?

          With puppets.

For whom?

           Creative children.

Why?

          To find out why this group is exceptionally good at creating cabbages.

          True, that last sentence got a little long and maybe creating cabbages wasn’t exactly what Pat meant, but who cares? We were having fun. Just playing around.

          One common saying in the Lewy body community is that if we weren’t laughing, we would cry. In this situation it is more like laughing is a lot more fun than crying, especially when you are not in control of the universe.

         

Pat’s comments on McKenzie Maria McGillicutty: How to Enjoy a Little Nonsense When It is Hard Finishing One’s Sentences.

          I like what you just read [the essay above].

         Pat, do you think of yourself as a creative person?

                 Yes.

          One example of your creativity is your love of all kinds of rocks. What do find interesting in what most people would call “ordinary” rocks?

          Their beauty.

 

Ch.111 Here’s What We’ve Been Avoiding Telling You

          Late August, 2021

          Elizabeth Acevedo is the author of a tremendous novel written in verse entitled Clap When You Land. About half-way through the story, a teenager named Yahaira Rios talks at length about her lover named Dre. Suddenly, Yahaira speaks directly to her readers, admitting that the reason she’s been telling us all this information about Dre is so she can avoid discussing her father’s recent death in an airplane crash.

          Here are two things we’ve been avoiding sharing with you. They are about Pat’s non-cooperation and combativeness, two issues common to Lewy Body patients but embarrassing to discuss.

          First, Pat has been refusing to take her medications almost half the time at the assisted living center. This concerns the staff, of course, and undermines her treatment for depression and other physical problems. I am especially worried that her refusals will interfere with the prednisone she takes to fight her recent bullous pemphigoid attack. Lately, the staff has been giving her medications in applesauce and that seems to help.

          Second, and even more challenging, Pat’s bottom and backside are so sore from urinary burns that she has taken to fighting the staff when they try to change her underwear. I leave the room and walk far down the hallway when Pat’s attendants show up for this purpose. These women tell me they understand that Pat is scared and that her anger is a defensive reaction. They assure me that they don’t take Pat’s aggression personally. Also, Pat usually calms down immediately after they complete their task, sometimes even thanking them before they leave the room. Still, Pat’s anger and occasional aggression (slapping at the attendants) makes their already difficult job that much less rewarding.

          Pat and I recently had a consultation with the director of a memory care center in Eau Claire. This very experienced individual recommended we begin a two-week trial of a “mood stabilizer” to see if Pat would feel less scared and therefore might be more cooperative with the staff. It wasn’t clear what exactly the director meant by “mood stabilizers,” though. Was she suggesting a true mood stabilizer like lithium or Depakote? An anti-anxiety medication like lorazepam? An anti-psychotic such as clozapine? A sedative? I’ve been told repeatedly in support groups and in Lewy Body Dementia Association materials that these drugs should be avoided by Lewy Body patients, especially anti-psychotics. They shouldn’t be administered unless absolutely necessary.

          Unless absolutely necessary. Is absolutely necessary now?  Are we at that stage in Pat’s journey?

          This seems like a good time to call in all the troops. Fortunately, Dr. Cash, Pat’s regular physician, has an opening next week. In the meantime, I’ve had a good talk with the Director at Pat’s assisted living center, spoken with members of my support groups, and written emails to my children. Perhaps a clear trajectory will emerge. Probably not, though. The Lewy Body journey is seldom that cooperative.

 

Pat’s comments on Here’s What We’ve Avoided Telling You:

          I think it is a very good idea to provide regular in-patient care for anything that represents or somehow is stabilizing what people are going through.

          Ron to Pat: What could be done to ease your combativeness?

          Pat: Those are difficult questions. It’s difficult to talk about what to do when people get combative when they are trying to change her.

 

Aug. 28, 2021. ADDED NOTE: It took some thought, but I believe we have arrived at a reasonable course of action. Pat will begin a thirty-day trial of not taking any “mood stabilizers” once she ends her prednisone regimen on Aug.31. Prednisone is well known to increase a person’s anger, aggression and impulsivity. I believe it is quite likely that she will be considerably less combative as soon as she gets off that medication (which was prescribed to relieve symptoms of bullous pemphigoid).

 

Ch.112 Tears of Love

          Sept. 2021

          I thought Pat was sleeping when Dan, her Home Health nurse, and I began talking about her situation. My main concern, I told Dan, was keeping Pat as safe as possible. I wanted to protect her, to lessen her pain, to find for Pat the best people to help her and the safest place for her to reside.

          Just then Pat started crying. That is unusual. Pat seldom cries even when she is in pain or when she feels strong emotions. Dan guessed correctly that Pat had heard us talking and that she felt deeply touched by my (and Dan’s) caring. And then I cried and told Pat I would protect her the rest of her life. And then we cried together.

          Dan, a tender-hearted giant of a man (who cried a little himself), told Pat her tears weren’t tears of pain but tears of joy because she felt so deeply cared about. But I think Dan was mistaken. I think both of our tears were tears of love. Tears of love emerge when you are overwhelmed by the love you feel toward another and/or by the love someone feels toward you. Tears of love signify that this person, this partner in life, has become interwoven into every cell of your being.

          Pat and my tears of love say that we hold each other in our hearts. For now. For well beyond “til death do us part.” Forever.

 

Pat’s comments on Tears of Love:

          I like it. It touched me.

          I think tears of love happen, but I don’t know if they happen in the same way [to everybody].

 

 

Ch.113 Pat Moves to a Very Good Memory Care Center

September 13, 2021

          Three months ago, I helped Pat apply to a local memory care center that I will name “The Refuge.” (I am using fictional names for people and places to preserve the privacy of the caregivers and the agency). This center has an excellent reputation; several of my support group members have placed their loved ones at The Refuge and been very satisfied with the level of care those individuals received. Above all, this place could provide Pat with a level of safety the assisted living center cannot provide.

          The waiting list for The Refuge was about 10 persons deep when we applied, so I expected we wouldn’t be able to get there for at least a year. But, amazingly, just last week I received a phone call from Betty, the administrator, saying that everybody in front of us had passed on an opening and so we could have a room if we wanted it. YES! Yes, we wanted that room.

          There were a few wrinkles that needed to be addressed, though. The most significant one revolved around the possibility of trying Pat on “mood-stabilizing” medications designed to ease her fears and subsequent defensive bouts of aggression. We wrote about this issue a couple chapters ago “(What We’ve Avoided Telling You”). Fortunately, after a candid conversation with the Director and Head Nurse at The Refuge, we have reached a mutual understanding. Pat will begin without additional medications. There will be a thirty-day evaluation period, after which we will re-examine the situation.

           The transfer was scheduled for the coming Monday. On Friday, though, Pat fell out of bed, bumped her head, and was taken to the hospital for a checkup. Nothing broken. We brought her back to Peaceful Life. And then Pat fell out of bed again, that same day. She returned to the hospital. This time the doctor discovered Pat has a urinary tract infection, her third in about one year. Next morning, Saturday, Pat returned to the assisted living center in a very weakened state. Later that day she could not get out of bed, even with a two person assist team.

          I was scared. If Pat could not get out of bed even with help, shouldn’t we change her destination from The Refuge to the hospital? I recalled how weak Pat became with previous urinary tract infections. She could have died if she hadn’t been hospitalized. However, my daughter Cindy, who has been with Pat, tried to reassure me; she said that this time the uti had been discovered early and that Pat is already taking antibiotics for it. Cindy was certain Pat would be strong enough by Monday to get into her wheelchair with little difficulty. I hoped with all my anxiety-filled heart that she was right. I knew I wouldn’t feel safe until she got there. I wouldn’t feel safe until I knew Pat was safe.

          And now the good news: PAT IS THERE! At The Refuge. As Cindy predicted, she did gain strength over the weekend. Pat had a hard time getting dressed and a tough ride in the van, so she arrived exhausted. However, she was re-energized a little when she was enthusiastically greeted by the Director and the facility nurse. This evening she even had enough energy to get out of bed and eat dinner in a private dining area with my daughter Jenny.

          It may seem strange to be so excited about getting someone to a memory care facility. But that is where Pat needs to be. That is where we, her family, need her to be, so we can all feel she is safe and well- tended.

 

Pat’s Comments on: Pat Moves to a Very Good Memory Care Center:

          I like it here. I like the people. I like the food. I’m not feeling scared here. I feel safe.

 

 

Ch.114 I’m Here at The Refuge, Aren’t I, to Stay.

          September 2021

          This morning I came to The Refuge memory care facility about 11 a.m. to visit Pat. I was just settling in when Pat looked at me and said: “I’m here at The Refuge, aren’t I? I’m here at The Refuge, aren’t I, to stay.” That last sentence wasn’t a question. Pat knew that The Refuge would be a permanent residence – that she would not be coming home. I had to agree, telling her that there was always a chance she would recover her strength once her urinary tract infection was over but that was not likely.

          I cried when I saw the sadness in Pat’s eyes. She cried when she saw the sadness in mine.

          And then Pat comforted me; she told me that it was all right, that she would be ok, that she was ready to stay there. She would have used the word “acceptance” if she had been able to find it. She held my hand and let me cry some more.

          I don’t know where Pat’s courage comes from. Never once has she requested or demanded I take her home. Never, even as she has painfully migrated from hospital to a rehab center to an assisted living facility to memory care. And now she comforts me when it seems that I should be the one comforting her.

          I stayed with Pat until almost 2 p.m. When I mentioned that I needed to go to take care of Levi, our collie, here is what she said: “It’s OK to leave at 2 o’clock. I will be ok.”

          I left Pat, then, at 2 o’clock, alone.

 

Pat’s response to I’m Here at The Refuge, Aren’t I, to Stay?

          This is the place I want to be in.

 

 

Ch.115 Pat Begins Taking a Strong Pain Reliever

          September 2021

          Pat has been in significant pain for a long time; she has two ulcers on her backside and another on her heel. Until today the only medicine she’s taken for the pain has been Tylenol, only because I have insisted that the well-known risks for people with Lewy Body taking opioids (mainly a rapid, irreversible drop in cognitive skill) made it too risky to try. But two days ago, the Director at The Refuge, a woman I’ll call Carol, talked with me about sparing Pat needless pain. Carol said that in her experience, which is extensive, these “black box” symptoms associated with opioids were rare. She said they had never had someone suffer cognitive loss from taking pain medicines while in their care. She recommended, for the second time since our arrival, that we try them, with the understanding they’d stop them immediately if problems occurred.

          By the end of that conversation, I felt trapped between my resolve to protect Pat from danger and my desire to comfort her by lessening her pain. I couldn’t do both. I had to choose. I felt sad, worried, scared, confused. Lost.

          Here’s where it helps to have knowledgeable friends and resources. In the next few hours, I contacted Paula, my support group facilitator in St. Paul; Janelle, my support group co-facilitator in Eau Claire; and a social worker at the Lewy Body Dementia Association. Paula, who has a vast store of Lewy Body knowledge, recommended going ahead with an opioid trial; Janelle gave me specific information about which meds might work best; and the social worker told me to “Go low and slow,” meaning to start with a low dose of a relatively weaker medicine.

          I was still conflicted. But then an image appeared in my head. I saw myself standing between Pat, who was in a lot of pain, and a group of people wanting to help her. And that felt wrong. I felt arrogant; I had given myself the exclusive right to decide what would be best for my wife. I hadn’t even asked Pat what she wanted. I realized that I needed to let Pat tell us what she desired (which was pain relief despite the risks) and I needed to let the professionals at The Refuge do their job.

          This morning Pat began a trial of an opioid pain reliever. Tonight, she was her usual self, but with more of a smile.

 

Pat’s comments on Pat Begins taking a Strong Pain Reliever:

          I want to feel less pain.

          I feel better [with the pain medication].

 

Follow Up Note:

October 2021

          About three weeks ago Pat began taking an opioid pain reliever, a Fentanyl patch to be specific.  The nurse at the Refuge, whom I will call Diane, recommended that medication because Pat would not have to take more pills and Pat has had some trouble swallowing pills lately. I hesitated because the advisor at the Lewy Body Dementia Association with whom I consulted said that going from Tylenol to Fentanyl was “a big step up” and violated the “go low, go slow” format she advised.

          Sure enough, Pat went into sleep mode once she began the Fentanyl. Either she was sleeping or in a fog when “awake.” Pat’s pain abated, but at a terrible cost.

          I then spoke with her nurse practitioner Barbara, the person in charge of Pat’s care, and she suggested a different medication, called Butran, also available in patch form. Butran is still an opioid, but the strength of the dosage is considerably weaker than Fentanyl’s. Pat agreed to the switch. Thankfully, Pat now appears to be getting reasonable pain control without cognitive inhibition. She is Pat again.

Ch.116 A Simple Gesture of Respect

          September 2021

          Last night I brought our Collie Levi to The Refuge. Before we in, though, I led him to some bushes in the hope he would pee. Just as we got there a door opened and Walter, the facility’s technician came out to walk from one building to another. “Walter,” I said, “the tv in room 28 isn’t working right yet. Could you look at it?”

          Walter looked at me with a hint of anger “It’s not room 28, it’s Pat’s room,” he declared. And then he told me about interesting conversations he’s had with Pat and how much he liked her.

          Afterwards, I thought of all the times I’ve spoken with technicians, maintenance people, nurses and doctors and others, their only concern being to fix whatever problem there was in the equivalent of room 28. I considered  how often I’ve felt in those situations like a body being manipulated or a cog in a machine rather than a whole human being, how often I’ve felt as if I were looked upon as more an object than a person. And, to be fair, how frequently I’ve treated those same technicians, maintenance people, and others as anonymous objects, my only concern being to receive some service. 

          Walter saw Pat as a real, whole individual, not just a body occupying a room. For that I am grateful.

          Walter is not alone at The Refuge. Pat has consistently been treated respectfully by the entire staff. For that I am even more grateful.

 

Pat’s comments on A Simple Gesture of Respect:

          Ron to Pat: Do you feel respected here?

          Pat: Yes.

          Ron to Pat: Could you give an example?

          Pat That when they change me they are respectful.

 

Ch.117 The Story of Blackberry the Steer: How Pat Saved a Life and Gained a Large Friend

          Every family has its stories that get passed down from one generation to the next. One of ours tells how one day Pat came home with a calf. I’ve heard her tell this story many times. I want to get it into print now so others can hear it too. I’m writing in first person, as if Pat were here telling you the story.

         

          It was a very cold day in mid-winter Wisconsin, about minus 25 degrees Fahrenheit. I was driving from home to an appointment I had with a naturopathic healer, and I was about half-way there when I spotted a small black shape at the next intersection. As I got closer, I realized it was a Holstein calf, no more than a couple weeks old. I could see it violently shivering so I stopped the car, went to him, and wrapped my arms around him. I noticed a piece of twine around his neck, and I guessed that he fell off a truck as he was being taken to an auction house. He was probably being taken there to be auctioned off for meat. Male cattle often are killed in our dairy land state since most males aren’t needed for insemination purposes. I decided that wasn’t going to happen to this guy.

          A few minutes later a car stopped, and two guys got out. They asked me what I was doing and if they could help. One man even volunteered to go to the auction house to see if anyone would claim the beast. He did go there, but there were no takers. “Well, lady, now what are you going to do?” one of the men asked me. I told them to put him in the back seat of my car. And they did. He sat there motionless, right in the middle of the seat. So, I drove him to my appointment, had a 30-minute therapy session, and came back out. He hadn’t moved a muscle.

          Now it was time to head home. On the way I stopped at a farm supply store and bought a gallon-size milk bottle and several gallons of milk.

          When I got home, I didn’t know what to do with the little guy, but I knew I had to keep him warm. Fortunately, our attached garage was mostly empty. In he went, willingly; I offered him the bottle and he drank down a whole gallon of milk in about two minutes. I’d say he hadn’t eaten for quite some time. Then I took the phonograph downstairs and played classical music to sooth him (and, later, to stimulate his brain).

          After that I decided I better call Ron. He was at work, but I got through to him right away. He asked how I was, and I told him I was fine but there was something he should know. “There’s a cow in our garage,” I said. There was a pause at the other end, and then Ron asked one question: “Honey, how did that happen?” When I told him what had occurred, he made no objection, except to tell me not to name him because once you name an animal you become responsible for it. “Too late,” I told Ron, “His name is Blackberry.”

          Well, Blackberry was warm now, too warm to just put outside. We kept him in the garage all winter, bottle feeding him as he grew bigger and bigger. That spring Ron hired two of our Scandinavian neighbors, Chip and Orlen, to put up fences around our property. We own about seven acres. Blackberry resided in 3 of them, with plenty of grass. We also turned our shed into a shelter and Ron had Blackberry castrated after we were warned that male bulls were far too dangerous for us to handle.

          Blackberry became a good friend. The only problem was he was becoming huge. Our neighbor farmers warned Ron to be careful. Not that Blackberry would want to harm him but because Ron could get crushed by accident. Finally, not entirely with my approval, Blackberry was taken to our neighbor Jeff’s feedlot, where he lived many years as the Big Boss of the heifers. Some days he would even walk through a creek bed to visit us. One time he brought along a heifer, so I called Jeff to tell him Blackberry and his girlfriend were having an overnight with us.

          One spring the farmer came to me and apologetically told me that Blackberry had slipped on an icy path and rolled down a hill. He was now lying beside a bush. He told me that Blackberry would surely die there because an animal his size would never be able to stand up in that situation. I ran to him and once again I wrapped my arms around Blackberry and this time I sang to him. After ½ hour I told him it was time to get up – and he did. The farmer and his men were amazed; their mouths opened in astonishment. They helped me lead Blackberry back to a safe area.

          Blackberry grew to over 3,000 pounds. He lived 17 1/2 years, not bad for a doomed two-week old calf.

          I loved Blackberry. I still do.         

Ron's comments on The Story of Blackberry the Steer: How Pat Saved a Life and Gained a Large Friend

  This is a true story. I think Pat was about 50 years old at the time, just recovering from her heart attack. I thought this would be a good time to share it with you, since several of the recent chapters of our blog have been disheartening as Pat's health has plummeted. I needed a reminder that Pat has led a rich and interesting life full of love and generosity. And she is still adventuring, albeit in the strange Lewy Body universe. 

 

 

Ch.118 Pat and I have a Serious Conversation about Death and Loneliness

October 2021

          “I will be gone…gone.”

          Pat was in a somber mood this afternoon as we visited. She made the above comment without preamble, so I had to guess at her meaning.

          “Are you talking about dying?” I asked.

          “Yes.”

          “Do you want to die?

          “No.”

          “Are you ready to die?

          “Yes.”

           I sensed that Pat was concerned about something else, though, in addition to death. Something more immediate. I had to guess again, but I had a hunch what was bothering her.

          “Honey, does it hurt you to have to stay here at The Refuge?”

          “Yes.”

          “It hurts me too. I wish we could be together.”

          “So do I.”

          This was the second time we’ve had a serious conversation in the last few weeks (See Ch. 114 to review the first discussion). Pat was admitting she felt lonely living apart. I am feeling lonely as well, even though I’ve seen Pat for 2-6 hours every day since she left home to go to the hospital several months ago. 

          My Collie dog Levi cries when he cannot go somewhere with me. Anywhere, he doesn’t care. He just needs to stay by my side. If he could speak, he’d probably argue that we are a two-person pack and that pack mates always stay together. For safety. For companionship. For love.

          Pat and I are a two-person pack. We are supposed to stay together for safety, companionship, and love. We ache for each other when we are apart. And today we cried when we reunited, knowing that we would soon have to part, knowing that we would never again live together.

 

Pat’s comments on: Pat and I have a Serious Conversation about Death and Loneliness:       

          I think it’s very thoughtful but may not be totally true [about being a two-person pack].

          One thing I find is being over here is a different place. Anyone can come in and it changes everything in our relationship fairly easily. It’s not at all like home. Every day we both wish we could be together, but...

 

Ch 119 Pat Thinks Better Then She Can Speak

          October 2021

          Pat and I used to talk about politics for hours. We also discussed local activities. But then Lewy Body came along, and we mostly quit thinking about these things. Life has become more narrowly focused; now we spend our time just being with each other, attending to the details of living. Enjoying eating dinner together at the memory care center is usually enough, as are holding each other’s hands and listening to classical music records.

          But this evening was different. First, I read a headline about Covid-19 from our local newspaper, the Eau Claire Leader-Telegram. Pat understood what I read and became interested in the topic. We spent perhaps 30 minutes talking, discovering that we had both received booster shots earlier that day at precisely 11 a.m., albeit at different places and without knowledge of the other. Pat needed reassurance that we were as safe from the virus as possible. We even discussed the reasons some people declined to get vaccinated or to wear masks.

          That wasn’t the end to our conversation, though. We shared thoughts about our children and grandchildren’s activities (our grandchild David was a member of a wedding party that weekend), how the coming winter storms might limit my ability to visit Pat, etc. Not politics, however. We are leaving those concerns to the rest of humanity for now.

          One thing that surprised me during our discussion was the clarity of Pat’s thoughts. Not that she could express her ideas as clearly as she thought them; Pat’s words still tended to trail off or become disorganized after 6-10 words. But there is a difference between knowing what you want to say and being able to say it.

           I found I could track Pat’s thoughts so long as I paid careful attention. Here is an example. Pat might start a sentence as follows: “David is handsome. He is going…to…an orange.” Putting her sentence in context, I could guess that she might be referring to David attending the wedding. Then I would ask Pat if she was talking about David going to the wedding? “Yes,” she would confirm if I had understood her content. If I was wrong, she would try again, and so would I.

          Most importantly, I realized that Pat was still thinking well and understanding what was going on around her better than she could tell us. (I suspect that may be true for many people afflicted with Lewy Body.) My goal now is to listen for Pat’s thoughts, not just to her words.

Pat’s comments on Pat Thinks Better Then She Can Speak:

          I agree [that I have thoughts that I have difficulty expressing].

 

 

Ch. 120 Pat Tells Me How Each Rock is Special

          My daughter Cindy had a great idea: bring Pat a small box filled with selections from our mineral collection. I had taken over a few small ones already but this way she would have many to appreciate. I selected about a dozen, trying to gather “rocks” with varying shapes, looks, and textures.

          Pat began by holding a piece of amber in her palm, feeling its warmth and admiring its warm orange glow. “I see what’s inside it,” she said; “its depth.”

          Next an ammonite (a spiraling fossil that lived millions of years ago). Pat, turning it over and over, said that “This form was special, like no other.”

          Then an amethyst, purple and pointy: “This goes on forever and ever any way you want to turn it. A very strong rock. It could live forever.”

          Tiger Eye (yellow shimmering parallel lines against a black background). Pat: “Absolutely my favorite. The lining. The way the lining makes it move.”

          Ocean Jasper (pastel expanding circles set against a plain background, originally found near the ocean). Pat: “Quite special because it is a part of itself. It doesn’t fall apart into pieces and never will.”

          Mica (flat, silvery sheets that can easily be pulled apart). Pat: “Probably the most fragile but everlasting.”

          Pat could relate individually to each stone (Technically, they aren’t all minerals because a mineral must crystallize). Now I realize better why Pat collected plain, “common” rocks, the kind most rockhounds called “leaverites” (as in “leave ‘er right there”). When every rock has its own distinct personality there can be no such thing as a leaverite.

          I guess that’s why Pat was such an excellent counselor. She never accepted the idea that any human being could be a leaverite, either.

Pat’s comments on: Pat Tells me How Each Rock is Special:

          Ron: “Pat, do you think anyone is a “leaverite?”    

          Pat: “No.”

 

 

Ch.121 Pat has Two Almost Pain Free Hours

          November 2021

          Diane, the nurse at The Refuge, told me a few days ago that the staff there think I am a very anxious individual. I have to agree; Basically, since Pat began her quick decline from walking with a cane at home to needing two people to lift her at The Refuge, I’ve been worrying excessively, feeling helpless, and perhaps paying too much attention to Pat’s hurts and not enough to her resilience. But there’s another side to this story: Pat has almost never been pain-free during this entire six-month transition. She’s had skin breakdown from urinary burns, a wound on her heel necessitating debridement, and a continuing attack from her auto-immune skin disorder called bullous pemphigoid. This week alone Pat had to be taken twice to the local Mayo clinic building via wheelchair transport, first to see her wound doctor and then her dermatologist. Every time I visit Pat, I worry that I will find her suffering.

          Things have been getting better, though. Pat’s urinary burns have healed, thanks to the excellent care she has received from the staff at The Refuge; Pat’s heel is almost completely repaired; and the bullous pemphigoid has at least been contained due to Pat being placed on a strong prednisone regimen.

          Here’s what I’ve been longing for: just one visit with Pat in which she reports no pain, not in her bottom, not in her hands, not in her foot, not anywhere. And that almost happened last night. We talked, read together, listened to music, ate a snack. When I asked Pat how she felt she told me she felt fine and was not in any pain. I was ready to dance in the street with joy, when, ten minutes before I was going to leave, I passed her a book with an interesting picture, and, wham, it hit her hand funny, and Pat said “ouch.”  One little ouch. I suppose you could argue that one little accidental ouch was nothing like the “ows” I dread, but still, it felt to me like losing a no-hitter in the bottom of the ninth.

          Fortunately, I can see that Pat is healing both physically and emotionally. I have reason to hope she will pitch a true no-hitter soon. And that will help both of us relax.

 

Pat’s comments on Pat Has Two Almost Pain Free Hours and Ron Begins to Relax:

          I do feel I’m becoming free from pain.

          I’m not feeling any pain right now.

 

 

Ch.122 Pat Still Gets to Choose

          Pat and I were talking after lunch. I mentioned how nice it was just for us to be together. Her response: “Sometimes people who are together don’t need to be together.” I asked her if she meant that she wanted me to leave. The answer was a definite “yes.” And off I went, slightly shaken by her abrupt dismissal. But as I think about it, I feel glad that Pat can still make decisions and that she can communicate her wishes reasonably clearly.

          I believe that the ability to make choices is a hallmark of our basic human desire for autonomy. We define ourselves by the choices we made and make. I am Ron the chooser of marriage, quiet places, fiction, cinnamon raisin toast, etc. Pat is the chooser of rocks, abandoned calves, counseling, and interest in others. We are both defined by our choices past and present. Take away our ability to choose and you take away our personalities.

          Pat has Lewy Body Dementia, a disease that slowly eats away at a person’s ability to choose. However, Pat is not about to let Lewy Body destroy her autonomy. She insists upon her right to keep making choices. That’s why her telling me to leave felt good to me. Pat is still Pat.

          I have noticed one pattern, though, where Pat has difficulty making choices. Here’s an example. Tonight, I asked Pat if she would like me to read a chapter from a book tonight or tomorrow. I received no response. When I switched to a simpler format (“Pat, do you want me to read a chapter now?”) she immediately replied with a clear “Yes, I do.” So now I try to keep my questions immediate and clear.

          One thing I particularly appreciate about The Refuge is the effort of the staff to honor their residents’ right to choose. For example, recently one attendant I’ll call Margaret said this to Pat: “OK, on the count of three I will raise you higher on the bed, OK?” “No,” Pat replied. Margaret paused, took the time to explain what she wanted to do and why, and once again asked Pat’s permission. This time Pat said “ok.” Simple, yes, but in many institutions the question would not even have been asked and at others Pat’s response wouldn’t have mattered because they would already have raised her.

          So, tomorrow, if Pat once again tells me to leave, I shall. But I must admit I like it more when she chooses to want me to stay. After all, we’ve chosen each other most every day for the last 56 years. That’s over 20,000 times when we’ve each said yes, I want you in my life.

Pat’s comments on: Pat Still Gets to Choose.

          Ron to Pat: Do you think you still have the ability to make lots of choices around here?

          Pat: “Yes.”

          Ron to Pat: Do you still love me?

          Pat: “Yes, I will always love you. You’re my choice and I will always love you.”

Ch.123 Hospice

November 29, 2021.

          Pat has been receiving palliative care from a local agency for about a month. But I’ve been encouraged to engage that agency’s Hospice team because they could offer many services and, more importantly, hospice would concentrate upon maximizing Pat’s comfort. I was assured that it was not necessary for Pat to be facing imminent death for her to qualify for hospice.

          Today Pat and I met with Alexandra, a hospice representative. She discussed the benefits we will receive from hospice, most immediately a Broda wheelchair designed to maximize comfort. Hospice will also provide many medications and sanitary supplies and they will designate a care team including a nurse, social worker, spiritual counselor, and even a music therapist.

          And then came the critical question: “Is Pat on DNR (Do Not Resuscitate) status?

          What a sobering question! Pat and I had discussed this topic a couple of years ago, when we made advanced directives, but it was only theory then. Now it is real. Alexandra suggested I meet with Jim, a hospice social worker, and I agreed. I dug out Pat’s advanced directive and showed it to him. The directive includes the following three passages:

  • Pat agrees that I, as her agent, can make the decision to refuse or stop tube feedings and/or IV fluids.
  • Pat does want to receive all treatments to keep her alive, unless her doctor determines those treatments would harm Pat more than they would help her.
  • Pat does want CPR (cardiopulmonary resuscitation) unless a doctor determines she has a medical condition and no reasonable chance of survival with CPR or that CPR would harm Pat more than help her.

          Jim told me that these terms were acceptable. Pat could join hospice without full DNR status. Also, I am free to temporarily remove Pat from hospice if we opt to treat a potentially fatal condition, and then we could rejoin hospice when that condition has been favorably resolved.

          I tried to double-check Pat’s directives with her, but Pat had trouble understanding them at this time; Pat told me she trusted me to make the decision for her.

          As of now, Pat is on a limited form of DNR, as noted in #2 and #3 above. I think this is the best possible resolution, maximizing Pat’s comfort while maintaining some flexibility in the future.     

          Later, at lunch, Pat looked sad, and I felt sad. We quietly held hands, sharing our grief.

 

Pat’s comments: No additional comments from Pat on this chapter.

Ch.124 Pat Cannot Say Ron’s Name

          December 2021

          Today at lunchtime we met Cathy, our hospice nurse. She will be seeing Pat once a week. Cathy is a small, energetic woman with a calm center. Cathy asked Pat if she knew my name. “Yes,” Pat answered, but she was unable to say “Ron.”

          I was surprised, stunned. I had never considered this possibility. Better said, intellectually I knew Pat might forget my name, but I had not accepted that concept emotionally.

          Then Cathy asked another question: “Do you know what relationship you have with Ron?” Silence. And then: “He’s my big squeeze.” Here was another laugh or cry moment, one of many we’ve faced in our Lewy Body journey. This time I laughed.

          Later, in Pat’s room, I told Pat I was her husband, and my name was Ron. “I’m not going to forget you,” she replied, holding my hand. “We’ll be together,” Pat added, “forever.”

Three days later: I probably shouldn’t have asked, but I still hoped Pat would be able to say “Ron.” So, in private, I asked her if she could say my name. Once again, Pat said “yes” but no more, and once again she called me her big squeeze. “You are my big squeeze forever and ever. And I will be with you forever.”

          Perhaps, tomorrow, Pat may be able to say my name. That would not be surprising, given Lewy Body’s fluctuations. But Pat is right when she says we will always be together, forever, long after we’ve both forgotten our names.

 

Pat’s comments on Pat Cannot Say Ron’s Name.

          I’m ok with that.

 

 

Ch.125 Good News: Pat Lodges a Complaint and Makes Two Requests

          December 2021

Part One: The Complaint.

          I entered The Refuge at the usual time, about 11:15 a.m. Pat was in her chair just ahead of me. Pat looks angry, I told myself as I approached. Indeed, Pat’s jaw was tight, and she was grimly staring straight ahead. “How are you doing?” I asked. “So, so” Pat replied. “Are you angry?” I tried. “Yes, I am” was the response. Pat was angry because the staff had gotten her out of bed and dressed just before I had arrived, against her wishes. Pat then declared “and if you don’t take a stand…,” meaning that she wanted me to do something on her behalf. I needed to be Pat’s advocate. My hope was to find a way to advocate for Pat without antagonizing the staff.

          I decided to tell Diane, the memory care nurse, that Pat was angry, and to ask her to speak directly with Pat. Diane agreed. She immediately walked over to Pat’s wheelchair. Diane explained to Pat that they had gotten her up because she had a doctor’s appointment today and she was going to be picked up by a transport van at 12:30. Pat wouldn’t have had time for lunch if they hadn’t awakened her. Pat heard Diane’s explanation; I could see her relaxing a little, although she was still upset. Let me add that normally the staff would have let Pat stay in bed if she so desired. They usually honor the resident’s wants, which is as it should be. Pat did have time to eat a good lunch which she finished just before the transport van arrived at The Refuge.

          Pat had felt disrespected and certainly had the right to complain. She needed to be heard.

Part Two: Two Requests.

          Our Sunday family zoom session was scheduled the next day after Pat made her complaint. Pat listened attentively during the zoom session, and she was able to make two requests: 1) she asked our daughter Jenny to bake her a brownie; 2) she asked for help so Pat could see her granddaughter Elizabeth play the French horn during a senior high school concert. I believe these requests, like yesterday’s complaint, were definite signs that Pat has been feeling and thinking better recently. I attribute this positive change to Pat being out of pain and therefore having more physical energy and mental alertness.

 

Pat’s comments on: Good News: Pat Lodges a Complaint and Makes Two Requests.

          Ron: “Pat, do you think they heard you when you complained?”

          Pat: “It’s hard to evaluate. I do think they do things I want them to.”

          Ron: “What about the two requests you made at our zoom session. Did that feel good?”

          Pat: “Yeah, although it was hard to say what had all occurred” [translation: “It was hard to tell them what I wanted.”]

 

Ch.126 Pat is Taken Off Opioid Pain Medicine and Immediately Functions Better

          December 2021

          Just a few weeks ago I wrote about Pat going almost two hours without pain. Fortunately, Pat is currently generally pain free: the wounds on her bottom have healed and her bullous pemphigoid has finally retreated, at least for now. However, Pat was still being treated with a one time a week opioid patch until she developed a skin reaction to it. Diane, the Refuge nurse, and I agreed that this would be a good time to try eliminating pain killers completely. Pat agreed to a trial period without them.

          The results became obvious immediately. Pat was more “here” than before. She became more observant, noticing stuff in her room that she had never mentioned previously; more communicative, joining conversations and sometimes initiating discussions; Pat smiled frequently and laughed out loud; she also became angrier faster, occasionally making negative comments about how she was being treated.

          There was one other important change: Pat told me on three consecutive mornings that the staff wasn’t listening to her wishes, that her choices weren’t being taken into consideration. I consulted with Diane, who told me she had helped get Pat up that morning and the routine was no different than in the past. I believe that, but I also think the “new” Pat wants considerably more say in her life than the opioid affected Pat. I don’t have any solution to this problem, but I did ask Diane to ask the staff to maximize Pat’s choices whenever possible.

          I have no complaint about Pat’s weeks on the opioid medication. She was in a lot of pain and the staff at The Refuge wanted to alleviate her suffering. I am glad, though, to welcome my “real” Pat back. She’s back just in time for Christmas. I am gifted by her presence.

 

Pat’s comments on: Pat is Taken Off Opioid Pain Medicine and Immediately Functions Better.

Ron to Pat: Does it seem different to you now that you are off those meds?

Pat (who has just taken the lid off a yogurt container): Well, yes. I could tell from the lid and licking it off that things were really different. I could hold it up and look at it once and test it once and then let it go. It went into my memory bank.

 

Ch.127 Taste and Touch

          December 2021

           I usually come to The Refuge twice a day to “visit” Pat, once from about 11 a.m.–2 p.m. and again from 6-8 at night. That word “visit” is a weak word, though. I come to be with my wife, my care partner. I’m not visiting Pat. I’m reconnecting with her, reaffirming our love. We belong together.

          These two loving times are quite different. Pat eats lunch in the dining area during the daytime session. I sit beside her, mask on, listening to the staff members chat with each other while they feed a few of the neediest residents. Lately, Pat has been eating faster and better, especially since she no longer takes opioid medication. Fortunately, the food quality is excellent here. Meals are tasty, lightly herbed and spiced, and the menu is nicely varied with a strong Mid-Western preference.

          The residents don’t talk much during meals. There are few side conversations. Instead, people concentrate upon the challenging task of eating. Forks are lifted slowly to mouths. Spoons are carefully inserted into soups and puddings, occasionally spilling their contents before reaching their destination. There are no knives at the table.

          Meanwhile, Pat does well. She has developed a wonderful habit of saying “hmmm” when she enjoys a bite, which occurs frequently. I love listening and watching Pat enjoy her dinner.

          The evening session takes place in Pat’s room, where she has just been helped into bed after finishing supper. Her low-rise mechanical bed is lowered almost to the floor (Pat has fallen out a few times) and a 4” protective cushion is laid next to the bed. That’s where our collie Levi and I sit so we can be as close as possible to Pat.

          While taste is central to the daytime session, touch rules in the evening. Pat and I hold hands, kiss, caress, and cuddle. We also tell each other how much we love each other, repeatedly, but those words simply embellish our touches. These nights are when we truly feel our love.

          Then, usually around 7 p.m., we return to taste. I offer Pat a “midnight” snack, something like a cup of yogurt with berries. I raise the head of her bed so she can consume her treat. “Hmmm,” Pat says as she takes the first spoonful. “Hmmm” I feel in my heart.

          Finally, it’s time to separate. That’s the hard part. I cannot stay indefinitely, so out I go, promising to return tomorrow. Promising to belong, together, again.

Pat’s comments on Back to Basics: Taste and Touch

          I like it that I know I’m caring about and being cared about [when Ron is here].        

 

Ch.128 Year End Review: A Lewy Body Year of Transition

          Dec. 31, 2021.

          I’ve just reread the essay I wrote at the end of 2020 (Ch.80). I was hoping for a miracle, some magic pill that would both stop Lewy Body and return Pat to full functioning. I guess the beginning of a new year is a good time to fantasize. No magic elixir appeared, unfortunately, and Lewy Body continued its attack on Pat’s thoughts, emotions, movement, and physical health.

          Here’s one example: Pat and I took our country drives through the beautiful Wisconsin hills almost every day during the first half of the year. However, they gradually became briefer as Pat’s pain increased. Slowly, almost imperceptibly, Pat was weakening. Neither of us realized that her physical distress might be caused by her first urinary tract infection. By the time we did understand what was occurring Pat was in the hospital and then a rehab facility. Just when she was looking like she would recover (her physical therapist said “You’ll be walking and going home in a couple weeks”) Pat suffered two more uti’s, resulting in physical incapacitation, which continues into the present. Unable to support her weight, by June Pat was residing in an assisted living center and by September at The Refuge, a memory care center. She has also journeyed through home health care, palliative care, and now hospice services.

          Lewy Body, however, is capricious in its progression. Last night Pat suddenly began reading the captions from a Birds and Blooms magazine. Pat spoke perfectly and she clearly understood what she read. Equally important, Pat displayed a level of interest and enthusiasm for the written word that I haven’t observed lately. Pat was full of life and for that half hour as we read together Lewy Body was just a background figure.

          Pat and I now spend about five hours together every day, in two segments: 11 a.m. – 2 p.m. and 6 p.m. – 8 p.m. The first period revolves around lunch time; I’m glad to report that Pat eats well at The Refuge and has pretty much retained her weight over the last half year. The evening period is for us alone in Pat’s room. That’s our time to hold hands, share feelings of love, and support each other emotionally (Pat often is the support person, propping me up at times when I feel lonely or lost). We don’t try to hide from reality, though. We acknowledge the fact that it’s tough on both of us that we cannot live together.

          Here is what has surprised me about this transition year: I believe that right now Pat and I are closer than we have ever been. Why? Because when we are together, especially when we are alone in her room, there are no distractions. We come together for only one purpose, to share our deepest love for each other. I’m not watching football; Pat’s not involved in one of her projects; the cat’s not meowing (all right, our collie Levi is in the room, but he stays quiet, content to lay nearby); no attendant is trying to convince Pat to take her medicines. We are present with and for each other.

          We cannot know what Lewy Body will do in 2022. My hope is that it will slow its progression so we can continue to share our new life. I am certain, however, that Pat and I will treasure every day, together.

 

Pat’s comments on Year End Review: A Lewy Body Year of Transition

          Pat (pointing): What I think I hope for is that I can have my feet in that chair and I don’t know if I can [get strong enough to get out of her wheelchair and sit in a normal chair].

 

Ch.129 A Sad Day at The Refuge

          January 2022

          The Refuge is not large; about 20 persons reside there at any time. Only one individual had passed away in the five months Pat has lived there, and that was a woman who died just a couple days after we arrived. I had begun to think of this group as a long-term community, although it was evident that a few persons were becoming weaker over time.

          And then, within one hour on the first Sunday in January, two residents died.

          Pat became quiet when I told her who had died. She didn’t know one of them at all, Thomas, as he was a new arrival who had never been integrated into the group. But she liked and appreciated the other resident, whom I’ll call Harold. This tall man was a gentle soul as he shuffled through the halls, politely murmuring to himself; He always thanked the attendants who guided him to his chair at the dining table. I imagined him as the maître d of a fine restaurant, graciously welcoming every diner. Pat said she felt sad that Harold had died.

          One other resident, Sarah, told me she missed Harold. Nobody else said much, including the staff. I didn’t sense a “no talk” rule, though. People were free to say something or express feelings. They did not do so, however. Nor did I witness any grief. Just quiet.

          I don’t have any good understanding of this lack of visible emotion. As a former mental health counselor used to encouraging people to fully express their grief, I was surprised by this low-key response. Perhaps several of the residents can no longer understand what is happening to others and therefore don’t react. Perhaps others understand the eventuality and inevitability of death and so don’t need to address the topic.

          The Refuge is a place where twenty residents meet at dinner tables and seldom speak; it is a place where people never say things like “please tell me about your life.” And now I realize that The Refuge is also a place where peoples’ lives end quietly, certainly noticed but not openly grieved.

Pat’s comments on “A Sad Day at The Refuge:

          I feel awful about Harold’s death. I wish he would come back.

 

ADDED NOTE: Yesterday a caregiver at The Refuge told me that she and another caregiver have attended the funerals of every resident who died there. I know now that Pat will be long remembered by the staff and that thought is comforting.

 

Ch.130 A Sudden Setback for Pat and a Big Decision for Ron

          January 2022

          Pat had been doing well. She was pain free, thinking better, smiling more, and in a good frame of mind for about three weeks. And then…

          Disaster. Another attack of the auto-immune disorder (bullous pemphigoid) that attacks her skin, the third episode of this terrible affliction. And this time it came on faster and stronger than before. Within two days Pat’s groin, legs, hands, and even her mouth were covered with painful, itchy blisters. She was miserable.

          I sent a note to Diane, the Refuge nurse, telling her I would authorize them placing Pat on continuous doses of morphine and alprazolam if they thought it would help. They agreed and, essentially, we “snowed” Pat for two days. I knew this entailed considerable risk: Pat might not ever return to her “premorbid” level of functioning. But watching her suffer was too much.

          Now, four days later, Pat is entirely off morphine. So far, she is still very sleepy; however, she has managed to eat a little and to stay awake for short periods of time. Pat isn’t complaining of pain, and she isn’t scratching, so apparently her prednisone treatment is working. It is too early to tell, though, if or when Pat will recover her physical, mental and emotional capacities.

          A note about care partner responsibility: Sometimes people tell me that since Pat is now at The Refuge I should just relax and be her loving husband. Let the staff make all the decisions. In my opinion these well-intending individuals don’t understand the actual situation: when major decisions must be made, like the one above, much of the weight falls on the care partner. The staff needed my permission to “snow” Pat. They told me they agreed with my decision, but it was still my decision. And, if things go poorly and Pat does not return to her previous level of functioning, I will have to deal with feelings of guilt and sadness. Still, it is good to know I am part of Pat’s health care team; it allows me to feel empowered, combatting the sense of powerlessness I often feel in the face of Pat’s Lewy Body and bullous pemphigoid diseases.

 

Added Note, two days later: Pat showed signs of emerging from her semi-comatose state the day after I wrote the above essay. Today I’m relieved to say that she is almost back to normal, except for her still being excessively sleepy. But Pat has her smile back as well as her appetite, both of which I delight in observing. Also, the bullous pemphigoid seems to be in check as the staff begins slowly tapering Pat’s prednisone. One more crisis has been resolved, at least for now.

          Pat’s comments on A Sudden Setback and a Big Decision for Ron:

I think it was the wrong decision because it continued [too long].

Ch.131 The Everyday Club: Why We Come Daily to See Our Loved Ones

January 2022

          There are approximately twenty residents at The Refuge. Some of them, sadly, hardly ever have visitors; a few only see their families on special occasions; many see their people about once or twice a week; and three residents have someone come every day to see them. I am one of those continuous “visitors,” although “regulars” seems like a better term to describe us. The other two regulars I’ll name Hector, who comes twice daily to help feed his mother, and Lorna, here to spend time with her husband. We’ve informally christened ourselves The Everyday Club.

          Not everyone understands why we come so often. “Why don’t you take a break?” they ask. “Don’t you need to take care of yourself sometimes?” So, I began this essay by asking Hector and Lorna why they come to The Refuge so often.

          Lorna: “My husband tells me things he won’t tell the staff. I come here to ensure that he receives the best care possible.”

          Hector: “I love her. She’s my mother. She raised me and now I want to give back for all she did for me when I was growing up. She was there for me when I needed her and now, I’m here for her.”

          I share Lorna’s desire to stay in the loop as part of her husband’s care team. And, although Pat is my wife, not mother, I am grateful for all she has given me, and I too want to take care of her as she has taken care of me over the 56 years of our union.

          I have many more reasons to travel to The Refuge every day.

  • It just feels right. I’m doing what I want to do.
  • I’m not ready to begin a new life. I’m in no hurry to develop new activities, new friends, etc. I’ll have more than enough time later if Pat dies before I die.
  • I want to be with Pat for as long as she needs me. I feel an obligation to sit at Pat’s side, a duty that is also an honor.
  • I like routine and predictability. Consistency and predictability are my friends.
  • I have a strong need for Pat’s touch, hugs, and kisses. I never realized before how much my body craves physical contact. Holding hands, massaging Pat’s forehead, kissing: these physical actions are comforting and healing.
  • I get an endorphin boost when Pat smiles at my entrance. Pat has a beautiful smile that tells me I am special. I feel her smile at the center of my being.
  • I have plenty of time since I am retired.
  • Coming to see Pat is a joy and not a chore, duty, or obligation.

I am grateful I have this time with Pat every day. I know that many care partners don’t have that opportunity. I am not saying that my way is the best way for everybody. Each relationship is different. But, for Lorna, Hector, and myself, it is a blessing to be able to be a member of the Everyday Club.

 

Pat’s comments on “The Everyday Club.”

Ron: Pat, how important is it that I come every day:

Pat: Pretty damn important! It means he’s still there.

Ron: Anything else?

Pat:  I love you to bits.

 

Added note: Ironically, I became ill the week before publishing this note and I’ve now spent three days in bed, tired and dizzy. Every time I think I am well enough to see Pat my daughter Cindy warns me against going too soon; she wants me to rest longer, and she doesn’t want to risk transmitting whatever I have to Pat.  I know she’s right, but I am definitely not enjoying this “break.” Pat and I have done Facetime on our phones to stay connected, but that link only lasts a few minutes at a time.

          I’d rather be dizzy in love than dizzy in bed.

 

Ch.132 “Ron, You Used to be Funnier.”

January 2022

      I was having a conversation with Jackie, a woman I’ve known for over twenty years. She’s been reading our blog, so we began talking about it. That’s when she told me that I seemed to have lost much of my sense of humor.  Of course, just reading the blog chapters is a relatively small sample size of my entire life, but I do agree with Jackie; not only was I more humorous in the past but I was also more carefree. I’ve traded in some of my humor and positive feelings for a portion of sadness and grief. I attribute these changes to living with Lewy Body dementia for the last several years.

                I’m not depressed. My appetite is excellent. I’m sleeping as well as my prostate allows. I’m still generally optimistic about life. But I do regularly feel waves of sadness that occur when I think about what Pat is going through, or when Pat smiles at me, or when I write in the blog, or … anytime. They usually don’t last long, though, at least not consciously. If I am with Pat when a sadness wave hits, I try to let it pass through me, as if I were acknowledging an old acquaintance of whom I’m not especially fond.

          I’ve seen similar moments of sadness on Pat’s face. There are times when she breaks our connection, her eyes drift away from me, and her face and body seem to collapse a little, as if she were enveloped in grief. Sometimes we talk about these feelings; more often we just hold hands.

          My sadness (and, I believe, Pat’s) reflects all that Pat and I have lost to Lewy Body. Rock collecting. Political conversations. Walks. Travel. Professional collaboration. Sleeping in the same bed. Gone.     

          Let me say this to Jackie. Thank you for reminding me of the more joyous individual I was before the Lewy Body onslaught. Perhaps I will watch a few comedies on Netflix to remember how it feels to laugh freely. But please try to accept me as I am today, less humorous, and sadder. That is who I am.

Pat’s comments on “Ron, You Used to be Funnier.”        

Ron: Do you think I am sadder now than I used to be?

Pat: No

Ron: Are you sadder?

Pat: No. I feel more fulfilled. Maybe what’s going on with us will never end.

 

Ch.133 Pat’s Protectors Work Together to Help Her Heal

          Feb. 2022

          The first warning signs came from Pat’s attendants at The Refuge. Two days in a row, when I asked them how Pat was doing, they told me that she had open wounds on her buttocks and groin. That hadn’t happened before; instead, the staff here healed the wounds she came with from the assisted living facility.

          Pat began complaining of pain, especially when she was sitting in her wheelchair. It was steadily becoming worse. Pat was progressing from discomfort to suffering.

          Something needed to be done quickly. I called Cathy, her hospice nurse; I spoke with Betty, the nurse practitioner who is Pat’s primary medical person, when she came to The Refuge that day; I talked with her dermatologist’s call nurse; I consulted with Diane, the Refuge nurse; I asked them all to look at Pat’s body directly rather than just read staff reports; and, when I texted my children, my daughters Jenny and Cindy both got involved by asking relevant questions.

          This time the medical caregivers were prepared to combat the effects of Pat’s auto immune disorder. Within hours Pat had a catheter emplaced to lessen urinary burning, her dose of prednisone (which stops the disorder at high enough levels) was increased and Pat was sedated just enough with morphine to relieve her pain. By the next morning her caregivers observed her wounds already beginning to heal. Pat stayed sleepy but coherent. Most importantly, she was no longer hurting.

          It’s not often that medical people from four different organizations (hospice, memory care center, doctor’s office, and specialist clinic) and concerned family members all work together both seamlessly and effectively. This time we did so, along with the staff at The Refuge who administered the medications and monitored the situation.

          Three days ago, I cried at home (getting needed emotional support from Levi the collie and Blackie the cat); my daughter Cindy said she also cried. Today as I write this essay, I feel greatly relieved. I also feel grateful for all the people who together provide such timely and competent care for my wife.

Pat’s comments on Pat’s Protectors Work Together to Help Her Heal:

Ron to Pat: “Do you feel like you’ve received good care?”

Pat: “Yeah. No complaints”

Ron to Pat: “Are you in any pain? “

Pat: “No. I’m getting too tired to answer any more questions.”

 

Ch.134 “I’m Ready to be Gone.”

          February 2022

          I’ve been feeling lonely this week. I look around our house and see nobody here but myself. I feel an emptiness deep inside me. But I didn’t know why I was feeling that way until last night, when Pat told me and my daughter Jenny that “I’m ready to be gone.” I realized I’ve been picking up that signal from Pat the last few days, at a preconscious level, without accepting it consciously.

          It’s the middle of winter here in western Wisconsin and Pat has a history of seasonal affective disorder that might be contributing to her desire to leave this world. Additionally, all the pain she’s been in because of urinary burns and her auto-immune disorder is another contributor. Tonight, for example, Pat hurt as soon as soon as she was placed in her wheelchair. But those two factors are probably only adding to a deeper sense that life no longer has enough meaning for Pat to merit staying alive. She didn’t add much to her statement, but Jenny and I could see great sadness in Pat’s eyes. I believe at that moment Pat couldn’t see any reason to exist. Her life felt purposeless and joyless, filled with more pain than pleasure.

          Jenny and I didn’t try to talk Pat out of her wish to die. Instead, we reminded her that she is on DNR (do not resuscitate) status and that we would carry out her wishes at the proper time. We told her how much we love her and how much we value her presence in our lives. We held back our tears.

          This morning, I woke up around 7 a.m. and scanned the weather report. The prediction was for a major snowstorm to begin at 10 a.m. So, I did something unusual for me: I broke routine and rushed my collie Levi and myself into town. We joined Pat for her breakfast, talked for an hour, and then headed home (20 miles), just beating the start of the snowfall. Levi was delighted to help Pat eat breakfast; I was relieved to find Pat her normal self; and neither of us mentioned last night’s conversation. I felt connected rather than lonely, at least for that moment, and now that I am home, I feel sad but neither empty nor lonely.

          I doubt Pat will quit thinking about dying. But I hope that in the future she will only occasionally want her life to end. I want Pat to have more good days than bad, and I want her regularly to feel glad to be alive.

Pat’s comments on “I’m ready to be gone.”:

Ron to Pat (several days later): “Are you still ready to die?”

Pat: “Yes.”

Ron to Pat (another few days later): “Are you ready to die?”

Pat: “My choice.”

 

 

 

Ch.135 “Go For It” – Pat Makes a Choice

          February 2022

          I’m talking with Betty, the nurse practitioner who acts as Pat’s primary physician, about a difficult dilemma we’re facing. Pat can receive strong enough medications to ease her continuing pain but will cause cognitive decline, or she can stay cognitively aware but remain in considerable pain.

          Suddenly, we hear Pat saying loudly, “GO FOR IT.” Betty and I freeze, not knowing if Pat is talking to us. Betty checks and, indisputably, Pat is requesting pain medication, understanding (we think) that she will be less alert. Pat has made a clear choice and that makes my choice, as her healthcare power of attorney, equally clear. Pat will receive either long-acting morphine or the week-long Butran Patch she tried previously (and gave her a skin reaction). Meanwhile, Pat will also get strong doses of prednisone in the hope that eventually her wounds from the Bullous Pemphigoid breakout (which refuses to diminish despite aggressive treatment) will heal. So maybe, maybe, Pat will return to normal at some time in the future. I hope so: I need my wife back.

          I’m uncertain about whether Pat will be able to comment on this or future essays. But I will try to keep her in contact with the dialogue in any way I can.

 

Ch. 136 Time is Running Out

          February 2022

          This morning Pat was pretty much nonresponsive even though she hadn’t had any morphine for several hours. Pat also showed no interest in eating or drinking. I was concerned but unprepared for what our hospice nurse Chris told me: “I suggest we stop all Pat’s medications except for pain control.” Chris said that Pat’s body is shutting down and she is getting ready to die. It was time to simplify, time just to be with Pat as she drifted away.

          I stayed with Pat most of the day, during which she occasionally opened her eyes and twice told me she loved me. The next day was the same.

          This morning I heard myself screaming in the shower. An odd sound, not so much a scream as a cross between that and a groan. I’m sure I have never sounded like that before. 56 ½ years of marriage. 58 years of love. NO! DO NOT LEAVE ME. But she will. I can’t stop her. Pat can’t stop. We have maybe a week left, maybe a month, perhaps more. I don’t understand.

          But later this morning brought relief. Pat was back part-way, more alert, able to converse a little, sharing feelings, even drinking a root beer float. By evening, though, Pat was exhausted and hurting, ready for morphine and sleep.

          Apparently, Pat has recovered enough to keep her on her medicines, but with more of an emphasis on Pat having the option to take or refuse. I believe what she chooses will tell us how much she still wants to live.

          I have no idea what tomorrow will bring. Maybe screams in the shower. Maybe a living partner rather than a dying one.

Pat’s comments on Time Is Running Out:

          Caregiver to Pat: “Here is your pudding” [her crushed medications in chocolate pudding.]

          Pat: No response.

         Caregiver: “Pat, please take them. They’ll help you feel better.”

         Pat: OK.

       

 

         

 

Ch.137 Pat Rallies and Says Something Beautiful

March 2022

          Three days ago, Pat was barely conscious, heavily sedated with morphine but unable to communicate even when less sedated. I expected her to die soon.

          Two days ago, her pain subsided, and she quit taking morphine, instead being put on a less powerful opioid patch. She could only drink a little water.

          Yesterday, Pat was able to be fed some applesauce and a little pureed food. She could speak in partial sentences.

          Today, I asked Pat if she was hungry. “Yes, very hungry,” she said. I brought out a small cup of chocolate pudding which she ate without help and then she quickly consumed a whole plateful of chicken, peas, and pears (all pureed separately).

          Pat smiled. She said she was happy. Her eyes sparkled. She spoke in complete sentences, something that has become increasingly rare. We began discussing these last few years together – the Lewy Body years – and then she said: “Being in love is what the last few years has been about.”

           It’s been almost four years since Pat was diagnosed with Lewy Body. Because of Covid, we’d been mostly isolated the last two years until Pat went to the assisted living center. It’s been Pat and Ron, together, almost all the time. I suppose we could have ended up wanting to kill each other. But, instead, we are better connected and deeper in love than ever before. I’m sure that’s what Pat meant when she made that statement.

          I wish I knew what Pat will be like in the next few days. Will this rally continue, or will she slide back toward dying? Or will we go back and forth between these two states, as people with Lewy Body are well-known to do? I feel emotionally exhausted right now, teetering between hope and dread.

Pat’s comments on Pat Rallies and Says Something Beautiful:

          As noted above, it is now rare for Pat to speak in full sentences. But today, one week after I wrote the above note, when one of my daughters was saying good-bye and offering to kiss her, Pat paused, smiled, and asked “What would it take to get a hug and a kiss?”

 

Ch.138 Keeping “Victories” and “Defeats” in Perspective

          March 2022

          Yesterday Pat ate “real” food: A ham and cheese sandwich, a bowl of chicken rice soup, and a cookie.

          Today Pat was able to eat by herself as against one of us holding her spoon or fork. Additionally, Pat was able to sit in her wheelchair again after being bedbound for over a week.

          I practically broke into tears with each of these “small” victories. Curious about that, my daughter Jenny asked me why. I told her I considered these steps as benchmarks in Pat’s Lewy Body journey. Moving up through them meant, to me, that Pat was truly recovering and hopefully would live longer. Going the other way, back toward immobility and inability, marked a journey toward the end.

          Jenny offered a different perspective. She reminded me that people with Lewy Body have many ups and downs. Pat might have bad days where she can’t hold a fork, only for her to have no trouble doing so the next day. Jenny counseled me not to make too much of a trip in either direction.

          I know Jenny is right, and I am trying to take her advice. But it is difficult. I tend to see each downward drift as disastrous and each upward move as miraculous. I need to find a place inside myself where small victories and defeats are just that and nothing more.

          Jenny’s comments are already helping me, though. Tonight, at supper Pat began eating by herself but then tired and needed my assistance to finish her meal. I was able to accept that change as just a fact, not as a harbinger of the future.

Pat’s comments on Keeping “Victories” and “Defeats” in Perspective:

      Ron to Pat, picking up her fork: “Pat, may I help you eat your lunch?”

     Pat says nothing but takes the fork from Ron’s hand, slowly stabs a piece of meat, and brings it to her mouth.

Ch.139 A Good Day to Remember

          March 24, 2022

          Unplanned, I arrive early at The Refuge, at 10:45 instead of my usual 11:15. I have no idea why, but I get there in time to learn that two caregivers are getting Pat up for the day. I hear angry shouts from Pat’s room: she is objecting strenuously to something they are doing. Soon, though, the door opens, and I am presented with an unhappy wife. Nonetheless, we kiss, and I take her to a quiet room where we can converse with another resident and his partner. Pat still seems displeased.

          Jim, Pat’s hospice social worker, appears about 11:15. He asks Pat how she likes residing at The Refuge, fully expecting her to say she loves it. Instead, Pat shrugs her shoulders and says “ehhh!” That concerns me. I guess, wrongly, that Pat was gotten out of bed against her wishes. I ask Jackie, the lead aide, to check, and she assures me that Pat was asked and agreed to arise. 

          Now it’s time for lunch and things turn better quickly. First, Pat eats by herself, only needing occasional help getting her food onto her fork or spoon. Meanwhile, she begins conversing in complete sentences. We discuss our children’s activities, our granddaughter Elizabeth’s current high school band trip to Disneyworld, family stuff. I realize that Pat’s anger this morning was a sign that she had surplus energy available, energy that hasn’t been around for several weeks.

          I leave Pat for my afternoon break. By the time I get home I hear the phone ring. It’s Cathy, the hospice nurse. She’s calling me excitedly because Pat is talking with her, actually talking, and Cathy wants me to hear. I tell Cathy that, yes, yes, Pat was doing the same at lunch. Cathy and I rejoice.

          And now it’s supper time at The Refuge. My daughter Jennifer and her husband Jeff bring Chinese food and we eat with Pat in a private dining room. SHRIMP! Pat hasn’t tasted shrimp for months, maybe a year. She loves it. Pat continues speaking cogently during supper.

          Today Pat is back. Really back. I am trying to enjoy this day without expecting another one like it tomorrow. I don’t want to ask too much from Lewy Body.

          Good night, honey. Thank you for a wonderful day.

 

Pat’s comments on A Good Day to Remember:

Ron to Pat: “Do you feel any different today than before?”

Pat: “No, I feel the same. I’m just the same.”

Pat (After hearing me read this essay): “Yeah, wonderful.”

 

Ch.140 A Lesson in Humility: Ron the Caregiver Needs Care

          I had become arrogant: Ron the caregiver had only missed seeing Pat for one day all winter, I boasted to several people, as if I had set a “personal best” athletic record. I ignored the fact that Midwest Wisconsin had just finished a surprisingly mild winter with only one heavy snow and virtually no icy road days. I could have been grateful for nature’s gift to Pat and my relationship. Instead, I attributed my success mostly to my tremendous dedication to Pat and to our special bond.

          And then I became ill. I woke up Friday morning dizzy, the room spinning vertically whenever I opened my eyes. At least it’s spinning slowly, I said to myself, comparing this incident with previous episodes. I was confident the dizziness would soon dissipate as it had before. Unfortunately, I was mistaken. I stayed dizzy. And, as I retreated from bathroom back to bed, I noticed that I had slept ten hours straight but that I still felt absolutely fatigued. Finally, I realized that I was sick, and I wasn’t going anywhere soon.

          My daughter Cindy stays at our house when she drives up from Rochester, MN to visit Pat at The Refuge. She quickly realized I wasn’t my usual self when I stumbled down the hallway (“One step forward, one step sideways” was her comment on my progress) to speak with her. Cindy insisted I see a doctor and took me to the Mayo Clinic Urgent Care facility in Eau Claire where a doctor confirmed that I was ill, that I didn’t have Covid, and that I wasn’t having a stroke or heart attack. It was essentially an “I don’t know what you have but here is want it isn’t” message that was intended, I think, to be reassuring. Instead of being reassured, though, I was worried. Who would be there with Pat to help her at mealtimes and remind her that she is deeply loved?

          The answer to this question was that all three of my children (plus my granddaughter Elizabeth) would pitch in. Cindy, Jenny, and Joshua took extra turns, ensuring that at least one family member would be present with Pat twice daily. They also arranged FaceTime calls, a few minutes when Pat and I could talk with each other. They reminded me whenever I needed to hear it that I must not bring this illness to Pat, so therefore I had to stay away longer rather than the least amount of time possible. Basically, I couldn’t return until I could walk straight and stay awake.

          I think it was about day three of my illness when I began considering my arrogance. I hadn’t only missed one day because of any great effort on my part. Yes, I was committed to be with Pat as much as I could, but it was that and a combination of mild weather and good health that made it possible. So, now that I am well, having missed seeing Pat for four days, I will try to appreciate the miracle of being able to be with the woman I love any day I am with her.

          I am also deeply grateful for another miracle: having all three of my children living nearby and participating actively in Pat’s life. It’s unusual enough these days to have your children stay close to home and perhaps just as unlikely to have every one of them actively involved in the caregiving process. Thank you, Cindy, Jenny, Joshua for loving us both --- and for caring for me when I needed you.

 

Pat’s comments on: A Lesson in Humility: Ron the Caregiver Needs Care

        Pat (sensing something amiss)to Jenny: What’s wrong? What’s going on?

        Pat to Ron on phone call:  I love you. Get well soon.

        Ron to Pat: Did you feel cared for by the family when I was gone?

                   Pat: Yes

 

 

         

 

Ch.141 Creative Dining the Lewy Body Way

April 2022

          Mealtimes with Pat can be intriguing adventures. Today, for example, Pat decided to push her luncheon of peas and macaroni with ham off her plate. She wouldn’t or couldn’t tell me why. It wasn’t that Pat disliked her meal and she said she was hungry. Nevertheless, Pat was determined to push the food off her plate.

          Now what am I going to do, I asked myself. How could I help Pat eat her lunch? My first try was to explain to her that it was not a good idea to push her food off the plate – it would mean she would miss her meal and be hungry later. You can guess how well that “logical” approach worked.

          My second theory was to race Pat; I would gather food with her spoon and bring it to her mouth to eat before most of it was wasted. That worked a little better but Pat eats slowly. She was winning the race.

          And then I had a moment of clarity. I remembered a story my brother Don told me years ago. Don was an early practitioner of strategic therapy. Here is one example he shared with me many years ago. Imagine that you have a cat who keeps pissing in one corner of the bathroom. No matter what you do with punishment or reward that stupid cat won’t stop pissing in the corner. So, what can you do? Answer: move the kitty litter box to that corner!

          That’s when I realized I needed to accept Pat’s actions rather than argue with her or try to circumvent them. I placed my spoon beside her plate and caught the macaroni with ham and the peas as Pat pushed them over the side. Then I either fed her or replaced the food on Pat’s plate. To my amazement I realized I was now enjoying our interaction. We had mutually created a new approach to dining together. Of course, this may be a one-off, meaning Pat won’t keep pushing food around and/or this solution won’t work next time. But today in this moment we were smiling together.

          People with Lewy Body don’t play by conventional rules. It’s my job as Pat’s care partner to try to match her creativity with my own. When that happens, we can turn a minor crisis into a positive experience.

 

Pat’s comments on: Creative Dining the Lewy Body Way

          Ron to Pat, “Do you know why you keep pushing the food off your plate?”  Pat: “No.”

         Pat, angrily, after Ron takes her glass of juice away from her just before she tries to pour it on the floor: “Why did you do that?”

 

Ch.142 “I Wonder What I’ve Missed”

           April 2022

          The last few days with Pat have been exciting because she’s been healthy, happy, and alert. Thanks to aggressively treating her auto-immune disorder Pat is currently wound-free and consequently pain-free. No morphine. She’s speaking in complete sentences and smiling.

          Tonight, my son Joshua and his wife Patty brought one of their dogs, a black mongrel mistakenly named Serenity, to Pat’s room. Pat petted Serenity and enjoyed her presence. She also petted our collie Levi, actively reaching out to him as well. Pat told Patty and Joshua that she was doing well. Additionally, Pat was clearly moved when I showed her a locket I’d found today, one that opens to show pictures of her parents and baby Patricia.

          After Joshua and Patty departed, I mentioned that Joshua had been coming to see her frequently despite his busy teaching schedule. Pat looked surprised, so I tried to remind her that Joshua had come just yesterday and stayed. But Pat wasn’t reminded; she had no memory of his previous visit.

          I noticed Pat looking wistful a couple minutes later. I asked her what she was thinking about. “I wonder what I’ve missed?” was her reply.

          Pat and I have a long-made commitment to honesty, so I didn’t try to minimize her concern. We talked together about how Lewy Body has robbed Pat of her memories and how alleviating her pain from bullous pemphigoid with morphine has sometimes kept her from perceiving reality. We cried a little. Here was another bittersweet situation: at this moment in time Pat was alert enough cognitively and emotionally to be aware that she has missed a lot in previous moments. We’ve had many similar bittersweet experiences in the four years we’ve been dealing with Lewy Body.

          Tomorrow I’m bringing a restaurant meal to The Refuge; Pat and I will have a private lunch in her/our room. It will be something to remember.

Pat’s comments on “I Wonder What I’ve Missed.”

          Ron to Pat: “Do you still wonder what you’ve missed?”

          Pat: [No response]

          Ron to Pat: “Do you remember eating together last night?”

          Pat: “No, I don’t.”

 

Ch.143 A Covid Breakout at The Refuge Includes Pat and Then Ron

         April 2022.

         Saturday

          I noticed that Jeff, a kind and gentle former teacher, wasn’t feeling well during dinner. The staff took him to his room. Thirty minutes later Sheila, the medication caregiver, whispered in my ear that one of the residents had just tested positive for Covid. She couldn’t tell me whom it was because of HPAA regulations, though. Soon all the residents and staff were tested. Me too. Ten of the twenty residents and one staff person tested positive. One of those ten was Pat. My test came out negative. Suddenly, without warning, we were in the midst of a runaway outbreak. I went home shaken and scared.

          Diane, The Refuge’s nurse, called me an hour later. I thought she would counsel me not to come to see Pat; instead, she reasoned that since I come to see Pat every day, I already might have been exposed to Covid. It was likely that my immunization shots were doing their job and I wouldn’t catch it. I was relieved because I don’t want Pat to go through this siege alone. But truthfully, I was also scared about being around all these sick individuals, as much as I care about them.

          I contacted Jenny, Cindy, and Joshua. They all agreed to be my backup; they would stay away from The Refuge until it is safe. That way, if I did contract Covid, they would be able to help take care of both of us.

          I was told that I’d need to wear a mask, goggles, and a gown when I came to see Pat, but that Pat would need to wear a mask only when she was out of her room.

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Monday

          I didn’t sleep well last night. I woke up tired and feeling sickly. I thought I might have Covid so when I arrived at The Refuge, I immediately asked for a test. Ten minutes later a bright pink band appeared exactly where I didn’t want it to be: Yes, I had Covid. The staff shooed me out of Pat’s room and told me I couldn’t come back for ten days. Before I left, I did get a chance to say goodbye to Pat but she looked too sleepy to comprehend. I went home and contacted my primary provider at Mayo Clinic. I took a two-hour nap and then went right back to bed for another nap. Now I understand why Pat has been so sleepy the last few days. My “mild” to “moderate” symptoms are plenty enough to knock me out of the game.

          Meanwhile, my “backup” team sprang into action. Jenny dropped off a special meal tonight for Pat and the night staff at The Refuge; Joshua offered to get me anything I need, and his wife Patty brought me a cannister of homemade chicken soup; Cindy called The Refuge to discuss Pat’s pain medications. They won’t go in the building, though. Now there are fifteen residents with positive Covid diagnoses and at least three staff sidelined by the virus.

          It is ironic that The Refuge had no residents test positive the entire first year of the Covid outbreak, when we as a nation were so ill-prepared for it, but now they are facing a huge outbreak. I am grateful that all the residents have had two or three vaccination shots and so most of the residents, including Pat, are suffering only modest symptoms. This is true despite the reality that few of the residents can comply with masking and isolating guidelines. At one point the staff tried to convince the residents who did not have Covid to stay in their rooms to stay safe. That didn’t work, either. Basically, the whole place is infected, staff and residents; They will all have to get through it together.

          Pat’s comments on: A Covid Breakout at The Refuge Includes Pat and Then Ron

          Ron to Pat: “Did you miss me?”

         Pat: “Yes, of course.”

        Ron: “The staff connected us every day on FaceTime. Do you remember that?”

        Pat: “No.”

Ch. 144: Ron’s Covid Fatigue Helps Him Understand Pat Better

          My bout with Covid has given me insight about Pat’s Lewy Body fatigue. Right now, I simply don’t have enough energy to think well, to care much about anything, or to do things. I lack enthusiasm even to call Pat (which entails asking one of the staff at The Refuge to help set up FaceTime on Pat’s phone). I am too tired to seek connection. For me, this situation is unusual. For Pat, it has become the norm.

          Pat has trouble waking up in the morning and staying alert during the day. Sometimes she can barely finish lunch or supper before her eyes begin closing. And, after supper, when I ask Pat if she would like to watch a movie or listen to music or look at the birds in the windowpane bird feeder, she frequently can only shrug. “Just let me lie down and hold my hand,” she seems to say, “I don’t have the energy for anything else.”

          Pat’s Lewy Body symptoms were mostly cognitive at first: hallucinations, confusion, sentence completion difficulty, delusions. Over time, though, more physical symptoms have become increasingly common: physical weakness, excessive sleepiness, and, above all, tremendous fatigue. Apparently, Lewy Body has reached her motor areas, the regions commonly associated with Parkinson’s Disease. Both Lewy Body and Parkinson’s occur when a particular brain substance, alpha synuclein, fails to be cleared from affected brain cells. In essence Pat now has both Lewy Body and Parkinsons, really two manifestations of the same disease.

          From now on, I will try to be more grateful for any energy Pat sends my way, knowing how little she has to spare.

Pat’s comments: Ron’s Covid Fatigue Helps Him Understand Pat Better: 

          Ron to Pat: “Do you feel like you have energy today?”

         Pat: [no answer]. [My question is too abstract].

         Ron: “Are you sleepy?”

         Pat: “I’m not sleepy right now.”

Ch.145 Pat Was Diagnosed with Lewy Body Dementia Exactly Four Years Ago Today

          April 12, 2022

          This day marks the fourth-year anniversary of the day Pat was formally diagnosed with Lewy Body Dementia by Dr. Donn Dexter at Mayo Clinic in Eau Claire, WI. I began today by rereading the first several chapters of our Lewy Body Dialogue book (which reprints the original 56 chapters of the blog). Some topics covered in these chapters include hallucinations, noise, good days, the need for support, “showtime,” “some days you want to cry,” and my being a “helicopter husband.” Most of these topics are still relevant although Pat doesn’t seem to hallucinate any longer.

          Our lives have changed a lot during these four years. When we began Pat was still living at home; we took daily country drives; I was solely responsible for Pat’s care and safety; we could drive 85 miles to St. Paul to attend a support group. Now Pat resides at The Refuge memory care center, and I drive those 85 miles visiting her twice a day.

          The greatest change I noticed, though, is in the length of Pat’s responses. For example, Pat’s first comment (on hallucinations) was over one page, which she typed herself. But gradually Pat’s comments became shorter, so that her response to Ch. 56, “Ending on a Positive Note,” was only five lines. And, more recently, Pat’s comments have become quite short, sometimes consisting only of a “yes” or “no” response to a question I’d ask. Lewy Body has gradually deprived Pat of some of her ability to create longer (and more abstract) comments.

          I feel sad, of course, about this decline. On the other hand, I am grateful that Pat can still understand at least some of what I write even if she cannot reply as fluidly as before. I know she understands because she listens attentively, smiles at appropriate moments, and occasionally adds a comment or two as I read out loud. I still have a working partner on the blog.

          We are blessed in that we still get to see each other twice a day. True, contact now is more through holding hands than talking and more through my helping Pat eat her meals than us eating together. But we remain care partners in life, supporting each other in all the ways we can. And that is enough.

Pat’s comments on Pat Was Diagnosed with Lewy Body Dementia Exactly Four Years Ago Today

          Ron to Pat: “Honey, it’s been four years since you were first diagnosed with Lewy Body.”

          Pat: Looks up at the sky, sighs, seems sad, says nothing.

 

Ch.146 Ron Refuses to Give Up Hope  

          May 2022

          “I hope Pat lives at least to the end of this year,” I told my daughter Cindy. “You may be a little too optimistic, Dad,” she gently replied.

          I know, intellectually, that Cindy is telling me something I need to hear: my wonderful wife is nearing the end of her life. Pat’s ability to speak has declined quickly in the last couple months. It is rare, now, for her to be able to complete a full sentence and all too often I cannot successfully interpret Pat’s statements enough to decipher her intent. Nor can Pat feed herself without help any longer. Her hands cannot grasp the utensils and when she does get a forkful of food, she often doesn’t remember how to get it to her mouth. Pat also struggles to understand or respond to my comments; I’m not sure how much of these blog pieces Pat comprehends, although she seems to be paying attention when I read them to her. And, lastly, Pat sleeps more and more, often only waking now at mealtimes.

          Physically, though, Pat has stabilized; her auto-immune disorder, bullous pemphigoid, has been repressed by a continuous prednisone regimen. With that one exception, Pat’s steady decline is evident. Six months ago, her body was fading faster than her mind; now it is just the opposite. 

          I have a sinking feeling as I re-read these paragraphs. And I can sense a battle taking place within my mind. Part of me accepts objective reality, including that Pat’s failing rapidly and probably won’t live until 2023, but another part of me refuses to give up hope. Not only do I want her to live, I’m still waiting for a miracle cure to be discovered that will bring Pat back, fully restored. I suspect that hopeful part of me

Is holding back more grief and emptiness than I can handle. It’s my life raft in the middle of an ocean of despair.

          Perhaps there is a middle space between my fully accepting painful reality or living in ungrounded fantasy. I’ve located that safe place before, but I can’t seem to stay there for long. For now, the best I can do is to acknowledge both parts of my being.

No Comment from Pat on this essay.

 

 

 

Ch.147 Good Day/Bad Day: the Lewy Body Roller Coaster is Still Operating

          May 2022

          Here’s how Pat was diagnosed with Lewy Body: Dr. Donn Dexter, her neurologist, told us that he wasn’t certain about what was causing Pat’s memory and behavioral problems until I mentioned how erratic they were. “Some days she is perfectly fine but then all of a sudden, she gets caught up in a delusion or a memory failure,” I said. These periods of rapid fluctuation are the signature symptom of Lewy Body Dementia, the Lewy Body Roller Coaster described in every account of the disease. Having never heard of Lewy Body, we left that meeting with Dr. Dexter scared and confused. We didn’t know then what we do now, that with Lewy Body you never get off the roller coaster.

          That discussion with Dr. Dexter took place four years ago. Yesterday, when I arrived at The Refuge at 11:30 a.m. I located Pat at the large dining table right next to Betty Ann, the activities coordinator. Pat was smiling and laughing along with several other residents. Then she ate a good lunch. Meanwhile, her hospice nurse Amanda reported that Pat was doing very well physically, with no visible trace of her auto-immune disease named bullous pemphigoid. After lunch I took Pat into the courtyard – celebrating the first warm day of spring. Pat was still happy at supper, and she ended our time together with a warm smile and a pleasant good night.

          Would Pat still be smiling and happy today? I asked myself that question on my way to The Refuge the next day. No. The Lewy Body roller coaster had moved ahead, and this time Pat was so sleepy she could barely be aroused. She ate little at lunchtime, responded only with yes or no answers if at all, and complained that she wasn’t feeling well. Pat’s dysphoria lasted all day. Yesterday’s good mood was only a memory, something to remind me that just as bad times follow good, so will we have another good day soon.

          Pat’s comments on: Good Day/Bad Day: the Lewy Body Roller Coaster is Still Operating: “You know what? I am still happy.”

 

Ch. 148   A Death in the Family   

          May 2022

          “My mom is dying.”

          Hector, my good friend at The Refuge, sent me this message about 9 p.m. and followed it with “My mother died” at 2 a.m. Hector’s mother Marlene was Pat’s usual dining partner because both sit in special Broda wheelchairs for comfort. These chairs place the rider too high for the main dining table; instead, Pat and Marlene were placed at a table that could be raised a couple inches higher than usual. Since Hector came to The Refuge every day to help feed his mother and I came at the same time for Pat, we shared a lot. When I had to stay away for ten days with Covid, Hector texted me each day to update me on Pat’s health. When Hector became very anxious, I reassured him that he was doing everything right regarding taking care of his mother.

          I arrived at The Refuge by 9 a.m. I met my son Joshua in the driveway and my daughter Cindy inside the building. My daughter Jenny also arrived later in the day as soon as she could get out of work. We came to comfort Hector, who had stayed at The Refuge to begin packing his mother’s things. We hugged and cried. I also wanted to tell Pat what happened and to share feelings with her. She was sleepy, however, and I don’t think she understood my words. But Cindy stayed with Pat to tell her again when she awakened.

          If family members are those who share powerful life experiences, then Hector certainly qualifies as a member of our family. May he find peace as he continues his journey.

          Pat’s comments on A Death in the Family:

Ron to Pat: “Do you ever think of Marlene and Hector?”

Pat: “Yes, recently.”

Ron to Pat three days later: “Do you remember them?”

Pat: “Yes, vaguely.”

Ron to Pat: “Do you miss them?”

Pat: “No.”

          Note that neurons in the amygdala, where emotions are processed; in the hippocampus, where short term memories are transferred to long term storage centers; and in higher cortical areas where feelings are integrated with thoughts to create empathy, are all damaged during Lewy Body Dementia. Hence, Pat has difficulty connecting at a feelings level concerning Marlene’s death, trouble remembering Marlene and Hector even a few days after they are no longer present, and she has lost much of her ability to feel empathy toward them. The saddest reality here is that Pat was a tremendously empathic person before Lewy Body took over her life. I can think of one recent situation in which Pat tried to comfort another resident who was in pain, so she still has the capacity to feel empathy in the immediate present. I am thankful for that because it allows me to retain my belief/illusion/conviction that Pat is still Pat, albeit a diminished version of herself.

 

 

Ch.149 “I Love You, Sometimes”

          May 2022

          It took me forty-five seconds to walk speedily from the dining room to the kitchen, open the cupboard, select a wide but short glass, and return to Pat’s table.

          Simultaneously, it took Pat 30 seconds to reach for a tall, thin glass of “drink,” tilt it, and pour most of the liquid onto the table.

          “Damn,” I muttered, as I pulled the glass from Pat’s resisting hands before she could finish the job. I was angry, partly at Pat for spilling the drink and more at myself for forgetting to have that second glass ready beforehand. If it had been there when needed I would have helped Pat pour the drink from the tall, thin glass into the short, wide glass, repeating the classic children’s lesson that the same volume of liquid could fill two completely different containers. I never did believe that lesson when I was a kid; I still think someone, probably my dad, is trying to trick me.

          Pat couldn’t care less about my disbelief. But she has let me pour her drink from one glass to the other rather than onto the table on several occasions. I’ve been trying to have an extra glass ready preventively at every meal. Unfortunately, this time I had forgotten.

          A minute went by. I tried to make peace, telling Pat I loved her. “I love you too, sometimes,” she replied.

          I asked Pat if she was angry with me for taking her glass away. She certainly was, she affirmed. Belatedly, I realized Pat was expressing her autonomy, her sense of control over the environment, when she poured her drink from the glass. I also recognized supporting Pat’s autonomy is more important than preventing a few spills, given the damage Lewy Body has done to Pat’s control over her world. However, doing so didn’t mean I should stand by and let her make a huge mess that I or the staff would have to clean up. The two-glass maneuver was a good way to honor her power while keeping the dining room sanitary.

           I apologized for acting hastily and for being upset with her. I offered to help her pour the rest of her drink into the second glass. Pat agreed to the compromise. We poured liquid back and forth a couple times. The argument was over, and I was forgiven (I hope).

Pat’s comments on “I Love You, Sometimes”:

[No Comment]

 

 

Ch.150 Looking into the Void: Pat’s Blank Stare Scares Ron

          May 2022

          It’s lunchtime at The Refuge. Pat eats a few bites; I look down to pick up another forkful for her but when I return it’s as if Pat isn’t there anymore. She is staring straight ahead, unblinking. I ask Pat if she’s ready for another bite but get no response. I try asking her what she is seeing; again, no response. It’s impossible to know what, if anything, is going on inside her head. Finally, Pat opens her mouth and takes another taste, but almost immediately she drifts back into nowhere. Into the void.

          And then, a minute later, Pat returns to my world, smiling, reconnected. Thank God, she’s back, I have time to think, before she departs once again into her private space, into Pat’s private emptiness.

          These blank stares scare me. I keep trying to get her out of them. Pat is like a car stuck in neutral while I search for a way to get her into drive. Or worse, Pat’s engine has been turned off and I’m desperately searching for the restart key. One day, I know, that key will be lost forever.

          Sadly, Pat is drifting away like this frequently, spending less and less time in our shared reality. Lewy Body is claiming her, moment by moment, preparing each of us for her death.

Pat’s comments on Looking into the Void: Pat’s Blank Stare Scares Ron:

         Pat is unable to respond.

 

 

Ch. 151 Pat No Longer Has the Ability to Help Write This Dialogue.

          June 2022

          I have feared this moment, the instant when I must type the following message: Pat can no longer contribute her words to our dialogue.

Now, often Pat’s speech is too impaired for me to understand her; her thoughts seem jumbled when she can speak; her ability to comprehend what I write is limited by her cognitive deficits and short attention span. The best I can hope for is a “yes” or “no” answer to any question I ask.

Perhaps “no longer contribute” is too strong a phrase because Lewy Body is such a fluctuating disease. With luck, on occasion, I may be able to converse with her for a little while about one of the blog pieces. However, I must begin treating the blog as more a monologue than a dialog. That takes pressure off Pat to say something meaningful each episode and off me attempting to make that happen.

“No longer contribute” is overstated in another way. This blog will always be about the two of us traversing Lewy Body’s hills and valleys. True, Pat may no longer have many words to share, but she still makes meaningful sounds, movements, and gestures. Yesterday, for instance, for the first time in weeks Pat slowly caressed my arm. I felt her love in that touch and it felt wonderful.

Ron’s words; Pat’s sounds, movements, gestures. We are still a team.

 

Ch.152 Pat Keeps Losing Weight Even Though She Eats Well.

120.8 pounds. That’s Pat’s most recent weight. This from a woman who weighed over 200 pounds before Lewy Body began its attack on her brain and body. True, Pat is a small person, only five feet tall, but it is sad and scary to see her steadily melting away.

I asked Diane, the nurse at The Refuge, if weight loss is generally the best predictor of mortality risk. She didn’t want to generalize, of course, but the answer was mostly affirmative. Our conversation began when Diane asked me if I would agree to placing Pat’s Libre 14-day blood sugar sensor in Pat’s thigh instead of her arm because her arms were now so thin that they bruised each time the staff replaced the sensor.

Pat still has a good appetite. Last night she polished off a sloppy joe sandwich and her dessert, mostly managing to feed herself. But I think her body isn’t processing her meals efficiently; calories consumed are not being fully converted into calories used. I plan to speak with Diane about trying Pat on a supplement like Ensure, but the last time she drank a bottle it caused digestive problems.

I help Pat both at her lunch and supper meals. I try not to push her too hard to eat. It really won’t matter whether she eats one or two more bites. Pat will keep losing weight because her body is gradually shutting down.

I feel sad and scared, as mentioned above. But I also realize I’m being prepared in this way for Pat’s death. Her body is leaving me, one pound at a time.

 

Ch.153 Getting Stuck in the Courtyard Brings Back a Sad Memory

June 21, 2022

The Refuge, Pat’s memory care facility, has a small but attractive courtyard in which residents can sit, take short walks, and visit. I take Pat there every day I can, a partial replacement for the long summer drives in the country that we took when Pat lived at home. Today, on the longest and warmest day of the year (about 90 degrees Fahrenheit), we sat in the shade at sunset. Pat and I listened to robins singing, watched the sun lighting just the tops of trees lining the hill above the courtyard, and felt the soft breeze on our cheeks. Three other residents spoke quietly at a table a few feet away. Levi, our collie mix, strolled around the courtyard, delighted that he could be let off his leash.

Just then a resident I’ll name Cherie appeared in the doorway. Cherie is always pleasant and talkative; unfortunately, she cannot understand people very well and she cannot speak in meaningful sentences. We invited Cherie into the courtyard, and she gave us a beatific smile, said “sure,” and walked the other way, unintentionally closing the door and locking us out of the main building as she departed. The only way back inside was to gain the staff’s attention. Naturally, there were no staff people in sight. I could see that one of the residents was becoming anxious, although Pat seemed unconcerned. I was becoming anxious, I realized. I began thinking about what it would be like to be stuck here, not in the courtyard per se but at The Refuge, knowing that you would be living there the rest of your life. I remembered the time several months ago when Pat looked at me and said, “I’m here at The Refuge, aren’t I, to stay.” We cried together that day. Not wanting to linger in that sad place, I pulled out my phone and called the main line; eventually a staff person picked up and opened the door.

By now Pat’s eyes were shut. She wasn’t sleeping, though. Lately Pat has been spending much time awake with her eyes closed. I’m not sure why she does this. I don’t think she has an infection and tonight she turned down my offer of sunglasses, so glare doesn’t seem to be an issue.

 Relaxed, I returned to the birds calling, the sun setting, and the breeze blowing against our cheeks, hoping that Pat could feel content here at The Refuge, at least tonight.

 

 

Ch.154 I Look at Pat and See Her Death

          June 2022

          I came to see Pat as usual today, a little before noon. There she was, in her wheelchair, napping. I went to kiss her. And at that moment I saw that she was dying. And yet nothing had changed. It wasn’t like she was paler than normal, or odd appearing. But something I still can’t name told me with absolute clarity that Pat would die very soon.

          Shaken, I sought out Diane, The Refuge’s nurse. I asked her if family members ever told her they could foretell their loved one’s death. “Oh, yes,” she replied, “often they do.” “And are they right when they say that?” I asked. “Yes, they usually are. Family members can often tell better than we can when the person they love is near death.”

          I told Diane what I had just seen, hoping she would say I was probably mistaken, that Pat appeared stable to them. But no. She told me the staff had seen that Pat was beginning to fail. Diane thought Pat might live another month but that was just an informed guess. She hugged me as I cried. And then I went back to Pat, just to be near her as long as possible.

         

 

 

Ch.155 Pat Quietly Passes Away

June 30 and July 1,2022

          I answered the phone just as I was about to leave my house to drive to The Refuge. “Will you get here soon?” asked Diane, the nurse, “We don’t think Pat has much longer to live.” By the time I arrived my children Jenny and Joshua were there. Cindy, having to drive 100 miles, arrived two hours later. Within another two hours our entire family convened: one husband(me), three children, two son in-laws, one daughter in-law, four grandchildren and one fiancée of a grandchild. Plus, Levi, our Collie because I wanted him to have a chance to say good-bye. Plus, Anne Marie, a friend and former Hospice chaplain, who will direct our funeral service. Plus, Hector, my good friend whose mother had passed away at The Refuge less than month before. Fifteen witnesses.

          And thus began our vigil.

          Pat was unconscious, mostly on her own but assisted by timely doses of morphine and an anti-anxiety agent. She was breathing with difficulty but regularly. Phlegm was accumulating in her throat, causing a rattling sound, very distressing for us to hear (though not painful for Pat), but even that was minimized with medications. By evening Pat was still steady enough for most of us to catch a little sleep, until I received a call from Cindy, at Pat’s bedside, around 3:00 a.m., asking me to call the others and come quickly. Pat’s pulse rate had dropped, her skin had a yellowish tint, and her breath was strained. Nevertheless, she hung on to life until perhaps 11 a.m., when within five minutes Pat’s breath slowed and then abruptly stopped. Her 77-year and 10-month journey through life had ended. Our marriage of 56 years and 363 days was complete.

          One source of great comfort was that several of the staff at The Refuge came to tell us how much they loved Pat. These seasoned professional caregivers said they had cherished Pat’s smile, appreciated her feistiness, and learned lessons about life from Pat even as her own life was gradually diminishing.

          I cried more these two days than ever before, each burst of tears providing a few minutes of relief. My children and grandchildren held me, rubbed my back as I cried, and matched my loud sobs with their gentle tears.

          My greatest hope during Pat’s five-year ordeal with Lewy Body Dementia and Bullous Pemphigoid was that I would stay healthy enough to support her journey to its finish. Fortunately, that wish was fulfilled. During the last two years, as Pat became increasingly incapacitated, I was with my partner every day during that period except for one bout with Covid and one brief illness. I will always be grateful that I, like the staff at The Refuge, could see her radiant smile and learn lessons about life from Pat during those years. She was an excellent teacher even when she could no longer speak complete sentences. Let me add that I never heard Pat complain about her fate; not once did she ask why she, such an intelligent and creative woman, had been singled out to endure dementia and disease; nor did she ever complain when she had to spend the last months in institutional care. “I’m here to stay, aren’t I” was all she said.

Pat Potter-Efron was and is no more. I will miss her every day. I will remember her every day. And I will love her the rest of my life. 

                                                    LIVING ALONE AFTER LEWY BODY: Ch. 156- END

Ch. 156 Unprepared for Life After Lewy Body: My Fear of Boredom

July 9, 2022

          Today, eight days after my wife Pat died from the effects of Lewy Body Dementia, I read about 100 pages of an entertaining book called The Lincoln Highway;  I picked tasty blackcaps (tiny blackberries) with my good friend Judy; I clipped nettles so that the next time we pick blackcaps we won’t get stung; I made my own breakfast, lunch and supper; I watched an entire 3 1/2 hour Milwaukee Brewers baseball game (they lost); I thought seriously about what I might do with our Lewy Body Dialogue site now that Pat has died; I was lucky enough to spot and photograph a red headed woodpecker at my bird feeder; I threw a basket of clothes into the washing machine and then into the drier; I responded to dozens of consolation notes from the kind members of the four Facebook Lewy Body groups I belong to; I even watched a ½ hour dvd on biochemistry in order to challenge my neurons to form new connections.

          AND IT’S ONLY SEVEN P.M.

          Pat lived at an inadequate assisted living unit and then at an excellent memory care center the last year of her life. Twice a day, most days, I drove 21 miles each way to help feed Pat lunch, went back home another 21 miles, and repeated the process for supper. All in all, I spent approximately 6 hours each day either with Pat or commuting. It felt like a full-time job. When I was not with Pat I mostly wrote for our blog or rested. Basically, being my wife’s care giver and care partner was the center of my being, both a commitment and a passion.

          I could never have done all those tasks mentioned above in one day before Pat passed away. I had neither the time, energy, nor inclination. But now, without the weight of responsibility and without the anxiety that comes from watching the person I love diminish day after day, I do have more energy (except when caught in the throes of my grief).

My problem is that I keep running out of things to do. Six hours a day is a lot of time to fill, especially when I haven’t had time or energy to develop hobbies and friendships over the last half-decade. I sense a ghost-like presence lingering outside the door of my consciousness: boredom. I’m scared to let him in, afraid he will be accompanied by his pal depression.

I have an identical twin, Don, who has been retired several years. He tells me that boredom is not to be feared. A little boredom is normal. There will be times when you have nothing to do. That’s life. Boredom doesn’t have to turn into depression. I’m sure he’s right. But I still am scared. I remember a chance encounter at a grocery store with an acquaintance named Bill who had been retired (involuntarily) from his school counseling job a year earlier. He looked awful. Bill told me he was bored out of his mind, so much so that he was grocery shopping today just to pass time even though he hated grocery shopping. I don’t want to become another Bill.

There is a particular Lewy Body component to my fear of boredom, I think. Being my wife’s care partner has felt like being a cast member of a Shakespearean tragedy, except that it was for real. Our time was filled with uncertainty, crises, and decline leading to the inevitable tragic conclusion. Whatever Lewy Body is, it isn’t boring. Exhausting, yes, but never boring. So, I haven’t been bored for a long time and I can’t imagine how to deal with it when it comes.

I plan to ask other more experienced singles how they cope with

boredom. Not how to avoid it but how to live with it. I need to gather

some wisdom from my peers.

 

 

Ch.157 Beautiful Service, Somber Burial, and Unending Grief

Monday, July 25, 2022

            Pat was honored on Saturday with a combination funeral and celebration of her life. Everything went well. First, people came for her visitation, and then Pat’s long-time friend and chaplain AnneMarie Swanson led the service with grace and exceptional calmness. All three of my children spoke of their memories of Pat. We gave out a “Gift from Pat” to each person who attended the service, a kit containing:

                        One Common Rock

            Because Pat loved all rocks and saw each one as special, just as she saw each person as special.

                         One grandfather stone or a small geode.

            Pat collected grandfather stones around Lake Superior (with permission from a Native American elder). They are part of Pat’s spiritual being.

              Pat used small geodes in counseling, helping clients accept both their rugged exteriors and their inner beauty.

                      One Apache Tear. Pat and Ron collected these bits of volcanic glass in the Arizona desert.  

                     One seashell.  Pat purchased or found these shells whenever we went to the ocean.

                     One Lake Superior agate (polished). A reminder of Pat’s love of beauty.

                     One pinecone. Symbolizing the potential for growth in each of us.

            And then, on Sunday, we drove to Hudson, WI to the cemetery where Pat’s parents and brother are buried, to add Pat’s body to the family plot. The day was perfect, about 70 degrees with a gentle breeze, but naturally our mood was somber.

            Pat was there, in my mind, through the service and burial. But not today. Monday, July 25, 2022, marks my first day of truly living alone. Yes, Pat will always be present but now she is also in my past.

            Here’s how I know that I have entered a new realm. As I was showering, I began crying, as I have been doing regularly. But this time I sensed a presence, as if a creature were rising from the depths of the ocean, many tentacled, floating upward, wanting to enfold me. Mesmerizing. Patient. Unyielding. If these ocean depths are emerging from my subconscious, then surely this figure represents my grief.

            It makes sense to me to say that up to now I’ve been mourning – an active, busy state consisting of discrete bouts of tearfulness and actions involving seeking comfort from others. The word grieving, to me, hints at a more continuous inner state, always present, an emptiness that cannot be filled.

Grieving is an uncertain process. For most people it lasts several months, perhaps a year. For others it seems endless, leading to a state called “complex grief.” Personally, I believe I will grieve the rest of my life. However, by that I mean I will always carry a “good” emptiness inside me, the place at the center of my being where Pat and I resided as a couple. Perhaps grief isn’t the correct word for that feeling. But whatever the right word may be, I want to keep feeling it.

 

Ch. 158 Heartache

          July 28, 2022.

Several weeks ago, I agreed to a request from Marian, a social worker at Mayo Clinic in Eau Claire, to speak at an ethics workshop for social workers. The topic was “ethical issues with dementia care.” She also invited my friend Richard Fuhrer, a retired psychologist whose wife Judy has Alzheimer’s disease. Marian wanted social workers to hear from us, both retired human services professionals, about the care our partners were receiving. I could have begged off, but I decided to show up even though Pat’s service and burial had been just a few days before. I thought I could handle it.

Richard and I both struggled to get through our talk. We each briefly cried several times, with Richard taking over for me and vice versa when one of us couldn’t continue. The attendees were kind and respectful, which helped.

That evening I became very anxious. I couldn’t stop shivering inside. And then, the next morning, I felt pure anguish. My stomach hurt; my lungs felt heavy; my heart ached. This must be the real thing, I thought, the moment when deep grief pushes past the excitement generated by all the activity during the period between Pat’s death and her service/burial. I felt great pain, almost as much as at the moment Pat died, and perhaps an even more profound despair. Now my body finally realized that Pat was gone forever, and it was sending that message to my brain.

Not knowing what to do with this pain, I turned to the words of Viktor Frankl, Nazi death camp survivor and author of Man’s Search for Meaning.  Frankl described how he vividly envisioned his wife encouraging him to live through torture and starvation. He believed that she helped him survive, saying: “The salvation of love is through love and in love. I understood how a man who has nothing left in this world may still know bliss, be it only for a brief moment, in the contemplation of his beloved.”

And so, I turned to a picture of Pat and asked her to help me survive the pain of losing her. I tried to listen to her voice, soft and musical, letting her comfort me. I wasn’t completely successful, though. It was as if I wanted to feel her presence so badly that I partly blocked the feeling of that presence. Still, Pat did comfort me; she told me she’d always be with me, in my heart and soul. And that was just enough… just enough to trade hope for despair, “be it only for a brief moment.”

 

Ch.159 Transitions

 

August 3, 2022

 

          I made a promise to myself not to make any significant decisions during my first month of grieving for Pat. I had heard many stories about how people made bad choices during that time. I had also seen my brother-in-law Kevin spend foolishly, purchasing thousands of dollars’ worth of stones and trees shortly after his mother died. But I have been thinking seriously about what is and isn’t important to me now that I am living alone. I’ve been trying to think about what really matters most to me now, even as my tears still come unbidden every few hours. And I keep asking Pat for her counsel and comfort, for help continuing my life with her only in my heart.

          This morning I called my good friend Rich Pfeiffer, the owner of the National Anger Management Association, to tell him I was resigning as Director of his Domestic Violence Offender Treatment Certification Program. Pat and I had developed that program; together we videotaped a training program for certificate seekers; I continued to supervise students all during Pat’s Lewy Body years. But focusing upon Pat’s needs left me without energy to research new developments in domestic violence treatment. I realize I simply don’t have the will, even now that Pat had passed away, to get up to speed. Fortunately, last year I recruited an excellent person to take my place, Charisa Richardson, and by now she is ready to assume all necessary duties. I felt particularly bad telling Rich because he had flown from his home in South Carolina to Eau Claire for Pat’s funeral. However, I was certain he’d understand, and he did; we agreed to keep up our friendship and I hope to visit him soon.

          My second major decision is to keep writing the Lewy Body Dialogue blog. This isn’t an easy choice. I will be writing without Pat’s contributions. I’m unsure how I can keep writing a “dialogue” with only one person. But I feel a need to write. Writing is how I gain perspective on my experience. It helps me understand better what I am thinking and feeling. And, paradoxically, writing alone at my computer connects me to others, allowing me to share myself more openly than I usually do in person. So, I have begun a new section of the blog, entitled “Living Alone After Lewy Body.” I’ve written an introduction to the section already as well as a few chapters that I had composed on a tentative basis.

          I believe these two decisions are good ones. It’s hard to be sure, given that I am still grieving. I have never felt the kind of emotional pain I’ve felt this last month, not even as Pat neared her death. Perhaps continuing the journal will ease my pain eventually; perhaps it will do just the opposite, trapping me in my sadness indefinitely. At any rate, these two decisions feel right and that’s about the best I can do right now.

 

Ch.160 Now What Will Give Meaning to My Life?

 

          August 5, 2022

I wrote in a previous essay about my fear of boredom, of having to find things to replace the roughly six hours a day I spent with Pat at her memory care center. Last week, walking with my collie Levi, I realized I have another, closely related concern. What will make my life feel meaningful?

I have mixed thoughts about the supposed need to find meaningful things to do with one’s life. Certainly Viktor Frankl, in his famous book Man’s Search for Meaning, believes that humankind seeks something deeper than just living. He suggests that now, in my grief, that this would be a good time to explore that need: “If there is meaning in life at all, then there must be a meaning in suffering…The way a man accepts his fate and all the suffering it entails…gives him ample opportunity…to add a deeper meaning to his life.”

On the other hand, part of me wants to say to Dr. Frankl: “Look, doc, I’ve had 78 years of meaningful existence; I’ve been a professional counselor, I’ve written books, and I’ve spent the last four or five years ministering to the needs of my Lewy Body afflicted wife. How about letting me just relax, fall asleep watching baseball every night, and chill? As a friend of mine, Mary Anne, an excellent therapist who had just resigned from her position as lead therapist at a major university clinic, told me one day: “I’ve spent the first half of my life taking care of others. Now I’m going to take care of myself the second half.”

I think I’ve found a compromise position. 1) Relax as best I can as I grieve; 2) Let opportunities for meaningful activities come to me as against searching for them; 3) Be patient: don’t agree to do anything in the name of meaningfulness unless it feels absolutely right; 4) Keep grieving and don’t take on any activity that would interfere with that most essential activity.

Amazingly, I think I have found something that meets all the criteria above. I was back at Pat’s memory care center, (which I previously called The Refuge, but which is correctly identified as Azura in Pat’s obituary) for, of all things, a pretend luau that came complete with an Elvis impersonator. It was silly and fun for the residents. Suddenly a thought came to me: “They could use a family contact person here.” Someone to contact the residents’ family members regularly, maybe run a support group and/or a social gathering group, act as a bridge between staff and families, be available to tell potential residents and their families what it felt like to have my wife living there. Someone to do the family contact work that the heavily burdened staff simply don’t have time for. Hesitatingly, I asked Nicole, the director at Azura, what she thought of the idea. Her eyes lit up. She thought it was a great idea. We made an appointment to discuss the matter. I presented a list of goals and possible tasks. Her bosses enthusiastically agreed to the idea.

Wow! Or is it “Oh, my God, what have I done?” But this opportunity meets all four criteria above. 1) I was relaxing when the idea struck me and I know I can create this “job” at my own comfortable pace; 2) I wasn’t looking for this possibility – it just came into my brain fully formed; 3) the idea feels absolutely right, keeping me connected with a place I like and people I love; 4) being there at Azura may help me grieve; I will be there with all my memories of Pat, happy and sad, hopefully integrating my past and present lives.

I did tell Nicole that I wouldn’t begin until September, though, giving me the rest of this month to focus exclusively upon my bereavement issues.

Viktor Frankl wins this round.

 

Ch.161 A Fisherman Named Grief Reels Me In

          August 6, 2022

Showering has become a dangerous time for me. This morning, as has occurred frequently, I was soaping up when, without warning, I began sniffling, then crying, then sobbing. “I miss you so much, honey,” was all I could think and say out loud. “I miss you so much.” And then it was over; another grief spasm, unbidden, had overtaken me.

How can these sudden, uncontrollable episodes be happening to me, a man who usually manages to exert at least a little control over his thoughts and feelings? I keep thinking that this can’t be happening. This can’t be real.

I remember my dad taking my brother Don and me fishing when we were boys. He demonstrated how to gently reel in a fish on the line. The goal, he told us, was to bring in the fish so quietly that it didn’t even realize it was caught. That way it would fight less and therefore be less likely to slip off the hook.

My grief is an excellent fisherman. He keeps reeling me in. Quietly, subliminally, he baits the hook with a loving memory; he casts the line into my river of sadness; when I take the bait and begin to feel Pat’s presence, he hauls me into his boat before I realize I’ve been caught. And then, suddenly, I cry for a few minutes, before he releases the hook and throws me back into the river of sadness.

 

Ch.162 I Watch a Loving Couple Holding Hands – and I Remember

Aug 11, 2022.

About two years ago my son Joshua and his wife Patty asked us if they could make a mold of the two of us holding hands. We agreed, not really understanding the significance of this action. Today, as I write, I am looking at the mold, remembering the feel of Pat’s hand in mine. And now, with only this small token remaining of the thousands of hours Pat and I held each other’s’ hands, now I understand.

Last night, I attended a forum given by the Azura Memory Care staff for the families of their residents. Halfway through one of the residents, a tall, lanky man in his late 70’s, wandered in looking for his wife Cheryl, who was there. The staff guided Henry to Cheryl and sat him next to her. Henry doesn’t speak any longer but soon I saw Cheryl reach over and take Henry’s hand. And there they sat, holding hands, for the next thirty minutes. I watched them, remembering.

          Remembering the softness of Pat’s hand in mine. Remembering the sense of calm; remembering the warmth; remembering the deep connection uniting us at a far more basic level than words could express.

          I never understood before why people often told me how wonderful it was to see the two of us holding hands. But now I realize that holding hands is a palpable way of showing love, indisputable and evident. Holding hands is like smiling; it tells everyone who sees it that happiness exists in this world, hopefully enough happiness for everyone. Happiness and love. I did feel happy, for Henry and Cheryl, but watching them also brought me to tears. Sadness had snuck up on me again, but at least this time it was mixed with a more joyful feeling.

          I was envious, too. A childish “No fair” call whispered in my mind’s ear. I wanted MY Pat here holding MY hand. But, of course, that cannot be. She is gone.

However, just for a little while I did feel Pat’s hand in mine, for only a few seconds. Pat was there, comforting me, warming my heart as well as my hands. And that is what I will remember.

 

 

Ch.163 A Good Sign: I Realize I Am Not Alone in Grieving

August 21, 2022

My twin brother Don flew in from Canada last week to spend time with me. Don hadn’t been able to attend Pat’s funeral service in person, although he had watched it virtually. Once home, I asked Don to watch the service again and we did, side by side. I cried in his arms.

Three days later we visited Pat’s grave. Don told me he needed to go to the gravesite so he could say goodbye to Pat. This time it was Don who cried. And that’s when I realized I’ve been so consumed in my grief that I hadn’t thought much about all the other people who are also grieving Pat. True, I had been moved deeply when I read the many cards of condolence friends and relatives sent, often mentioning how they had been touched by Pat’s love and how they would miss her dearly. But since the funeral I hadn’t asked my children or grandchildren how they were coping with their pain. Nor had I called or texted most of the other grievers.

I realize that I’m not expected to take care of others right now. Nobody is accusing me of being uncaring. But giving Don a hug, holding him when he was in pain, pulled me a little way out of my inner focus and back into the world.

And then, just a few days later, I attended my first grief group, one that meets face to face two Mondays a month at a local hospital. There were seven attendees, including two facilitators. All the participants had lost their spouses within the last few months, to a variety of causes: cancer, an auto immune disease, sudden kidney malfunction, Covid, and Pat’s Lewy Body Dementia. Several grievers’ spouses had suffered great and continuous pain, leaving their partners traumatized; at least one person was here because no one in her family would talk about her loved one’s death. I left grateful that Pat had died peacefully with her pain well-controlled and that I had the active support of my entire nuclear and extended family. I also left with two thoughts: 1) my path of grief was only beginning and would in some ways never end; 2) I have many fellow travelers on this journey, including my family, friends, and these new friends, with whom to share thoughts and feelings.   

I do plan to return to this grief group. I can’t say I felt better after it ended; actually, I felt a little chest-heavy, but I did feel emotionally connected and supported by the other grievers and the facilitators.

In the past few days, I have been reminded first, that many others are feeling their own pain because Pat died and secondly, that this world is full of grieving people, each searching for ways to survive the loss of their loved one. All in all, I believe these reminders are a positive indicator that I am moving through the obscuring clouds of death and grief back into a world full of life.

 

Ch.163 Happy Memories Don’t Have to Make Me Sad

August 29, 2022

          There are several ways I can drive the 100 miles to my daughter Cindy’s home in Rochester, MN, but the one Pat and I usually took is the most scenic, weaving alongside the Buffalo River for 25 miles until we reached the Mississippi River, then alongside the river cliffs for another 10 miles. Today I drove it alone, for the first time since Pat was institutionalized over one year ago.

          There were several places on the drive I remembered my calling Pat’s attention to natural beauty: a flowered hillside, an intimidating snapping turtle, clouds casting fleeting shadows on the fields, sandhill cranes standing stoically on alert for unwary fish, a mysterious cave in the cliffs, muddy muskrat mounds. Pat would look up from the book she was reading, say something like “Oh, yes, beautiful,” and perhaps reach over and touch my hand.

          I had awakened feeling sad today: Pat’s birthday is September 1, just a few days from now, our first special event since her passing. Maybe Cindy sensed something; she called and invited me to drive down, with Levi (my Collie dog). I’ve committed myself to saying “yes” to social opportunities even when I’m feeling blue. Half an hour later we were on the road.

          I became tearful as soon as I began driving alongside the river. And again, when I passed the place where the river lapped up almost to the road. And again, when I drove by the sideroad we sometimes took that climbed to the top of a high hill. And again… Each positive memory was making me sad. It felt like sadness was the appropriate emotion to feel, a way to honor Pat’s absence.

          And then a thought emerged, unbidden. “Hey, I don’t have to feel sad just because Pat has died. I can feel good about having these memories. It’s not disloyal to feel good.”

          That’s when I decided to place Pat in the passenger seat and talk with her as I drove. “Do you remember this, honey? Here is where we saw the mute swans one winter.” I only needed to do this for a few minutes, and I started to feel better.

          I’m ok with sadness. Indeed, it’s an old friend of mine. It’s easy for me to make sadness my default emotion when I think about Pat. But this voice in my head giving me permission to feel good, even joyful, in Pat’s presence, relieved my immediate sadness and gave me hope for the future.

 

Ch.165 I Visit Pat’s Grave on Her Birthday

Sept.1 and 2, 2022

          Pat would have been 78 years old on Sept.1, exactly two months after her death on the first of July. Unsurprisingly, I decided to visit her grave on her birthday. I rode with my son Joshua and his wife Patty 70 miles to Hudson, WI, where Pat is buried alongside her parents and brother. We walked the short distance to her grave, bringing with us two sets of artificial flowers I had selected for the urns on the family marker. Blue was Pat’s favorite color and so blue dominated the sets. It took several minutes for us to shorten and equalize the stems of the flowers and arrange them properly. Hopefully they will survive our blustery Wisconsin winters.

          We stood quietly before Pat’s grave for perhaps ten minutes. I thought about how much I missed her; I cried a little. I’m sure Joshua and Patty did the same. We hugged and cried together. And then we walked back to the car and went into Hudson for a meal. I felt warmed by Joshua and Patty’s love; I knew they came to Hudson both to honor Pat and to comfort me; they didn’t want me to be there alone in my sorrow.

          It wasn’t until the next morning that I realized something was missing; I could have asked for some time alone with Pat, a request that would certainly have been granted graciously. The fact that I hadn’t thought of that told me I was reluctant to let go at the cemetery. I wasn’t sure why I was so hesitant, and it didn’t really matter. What was important, I realized, was to have that personal conversation now. I walked over to my favorite picture of Pat, one in which she is looking up from a newspaper she was reading and smiling. She appeared to be carefree and relaxed, joyful. I told her everything I could think of that has happened to me since July: my commitment to say “yes” to social opportunities instead of my habitual “no;” the easygoing visit with my brother Don; my decision to volunteer at Azura, Pat’s memory care center; my upcoming trip to the quilt show in Madison (Pat was a quilter and we went to the show together once before); taking my dog Levi everywhere with me; waking up alone every morning; missing her so much; missing her so much; missing her, missing her, missing her.

 I must have repeated the phrase “I miss you so much” thirty times. It seems to have become my personal mantra, guaranteed to be accompanied by tears. I feel I’m connecting with Pat when I say I miss her so much, as if she hears my words and knows I will never forget her. I’m reassuring myself as well, that I will remember Pat the rest of my life, remembering her as a living, vibrant human being.

 

Ch.166 Ron Goes to a Quilting Show with a Friend and With Pat.

Sept. 7-8, 2022

 

          Several years ago, Pat and I travelled to Madison, WI just as she was beginning to be affected by Lewy Body. We had a good time exploring the mineral collection at the University of Wisconsin’s geography building and then “wheelchairing” through the narrow corridors of amazing quilts at the annual Madison Quilt Show. Pat was a quilter and needlepoint stitcher; I was happy that I could help her savor a visual feast at a time when her ability to enjoy life was beginning to diminish. Not incidentally, I too feasted on the array of hundreds of beautifully and creatively fashioned quilts.

          I received an advertisement for this year’s show. I knew I wanted to go, and I knew I wanted to be there with Pat. But I also knew I couldn’t go only with Pat, not unless I wanted to sob my way through.

          Sometimes everything falls into place when you most need it. My friend AnneMarie, the very same person who organized Pat’s ceremony and spoke so beautifully at Pat’s funeral/celebration of life, lives in Madison and is an accomplished quilter. I called her; AnneMarie accepted my invitation to attend the show together. And, as a bonus, I was able to arrange supper the evening before the show with AnneMarie, long-time friend Lisa and her husband Mike, and our former clinic colleague Carla. When we arrived at the restaurant, I noticed that the table was set for six people even though only five of us were physically present. I remembered the Alcoholics Anonymous’ tradition of leaving one chair empty at every meeting for those who couldn’t be there, including those who had died from the disease. I quietly placed Pat in that empty chair.

          I picked up AnneMarie the next morning and off we went. The quilt show was tremendous, better than I remembered. There were hundreds of quilts, each one seemingly more amazing than the last. AnneMarie taught me about metallic threads, trapunto techniques, traditional vs. “art” patterns, hand sewn vs. machine sewn quilting, computerized patterns, etc. I was engrossed. Even so, I found time to speak with Pat several times – and to cry a few times as I envisioned wheeling her to a particular quilt I thought she would have enjoyed.

          I feel grateful now, as I remember and write, that my first two out of town experiences since Pat died have been first to St. Paul with my twin brother Don and then to Madison with my good friends AnneMarie, Lisa, Mike, and Carla. Both times I took Pat along, in my heart and mind, but I wasn’t overwhelmed with the sense of loss that I would have experienced if I had gone by myself.  

          I am sure I will eventually be able to travel alone. Eventually.

 

Ch.167 Good Signs I am Returning to Life

 

          Sept.21, 2022

          I have been feeling lately that I am gradually emerging from the fog created by death and grief. Its like I’m walking out of a patch of deep fog and into a stretch where there is still some cloudiness around me but at least I can see sunlight in the distance. I am coming back to life – to all the good feelings and experiences that await.

          The first “living” part of me to return has been a strong desire to be around friends and family. At first, I needed people to comfort me, but now I want people with whom I can share thoughts and feelings.    

          Next to evolve has been a strong desire to do things, to be active – not just to escape my grief but to enjoy life. Last week I went on a little adventure, my first activity created by the local “Learning in Retirement” organization. I went to the Eau Claire Water Treatment facility alongside about 50 other retirees. I learned that our local drinking water would be colored brown from magnesium if that substance weren’t filtered out in the plant. Who knew? Today I’m going on my second Learning in Retirement trip, this time to an apple orchard.

          And here’s another good sign. Yesterday my daughter Jenny and I began to put together a 1,000-piece jigsaw puzzle, a colorful and imaginative rendering of our solar system. Pat and I often worked together on jigsaw puzzles; her gradual mental deterioration was marked first by her pace of finding pieces slowing, then by her frustration as she tried to force pieces into the wrong places, and finally by her loss of interest in the entire undertaking. One of my sad memories is rising out of bed after Pat was sleeping to take out the pieces Pat had misplaced earlier that evening. But yesterday, as I worked on the edge pieces while Jenny worked on colors (Pat never worked on edge pieces, by the way. They were boring. She too preferred working on colors or shapes), as we joked with each other about our different approaches, I felt myself walking a little further out of the fog.

 

Ch.168 Chasing After My Horse and Wondering About my Future.

 

          Sept. 24, 2022

          6:30 a.m. I’m waking up in my bed. I hear “Bump. Clop. Bump. Bump.” Something’s making noise just outside my bedroom. Probably Levi got out and wants me to let him back in. But no, I see him asleep on the floor. And Blackie the cat is resting on my leg. Hmm.

          I get up, open the door, and there he is: my beautiful, brown, 1200-pound Quarter Horse Lakota. He’s escaped from his field. “Escaped” isn’t exactly the correct term, though. I forgot to secure the gate yesterday when I mucked out his stall. All he needed to do was nudge the gate a bit and it politely opened and bade him safe journey.

          Lakota’s browsing around the yard, sampling sunflower seeds and other treats while I hurriedly dress. Now my problem is how to get him back in his field or stable. I know he won’t stand still long enough for me to get his bridle on. My best hope is to lure Lakota back with food. So off I go with a bucket full of senior horse food, one of his favorites. And it works, right up to within a few feet of the gate, at which point Lakota remembers that he is now a FREE horse, turns around, and marches off toward the County Road U. That puts him and any hapless person driving down the road in danger, so, against better judgement, I grab a rope, put it around Lakota’s neck, and attempt to guide him home. Twenty seconds later he’s FREE again and I’m flat on my face.  

          Fortunately, my FREE horse is still a hungry horse and just then he envisions all the goodies in the garage, where I keep them just next to the gate into his stall. Lakota quickly assaults a bag of apple wafers but while he consumes them, I drag all his other food away – except for another couple handfuls of apple wafers I show him as I walk into his stall. He knows very well what lies ahead – his adventure as a FREE animal is coming to an end – but the temptation is too great. He returns to his stall, I sneak out, and this time I make sure both gates are securely locked. And then I gather up several handfuls of grass which he graciously accepts as we return to our respective sides of the fence.

          I hate to admit it, but I’m beginning to wonder if living alone out here in the country is perhaps a little too much. It’s becoming a physical challenge, as Lakota has so kindly helped me realize. It’s also an emotional challenge now that I cannot share this life with Pat.

         I love the quiet, the sunsets, the peacefulness, and the slowness of country life. Love of country was a gift that Pat gave me; she grew up on the banks of the St. Croix River, far from the city, while I grew up in the heart of a city, namely St. Paul, MN. I never thought I would live anywhere else. But Pat was insistent we try the country. So here I am, in some ways still a stranger in a strange land. Now that Pat is gone a part of me is ready to return to my urban roots. Mostly I’d like to stay here, but without Pat the quiet is quieter, the slowness is slower, and my aloneness has become lonelier.

Note: This is the second time I’ve written about corralling Lakota. If you go to Chapter 26 (“Caregiver Meltdown.”) you can read the first.

 

Ch.169 Ron Begins to Recover his Sense of Humor

          Sept.30, 2022

          Nicole, the Director at Azura Memory Care, asked me to be the Master of Ceremonies (the “MC”) at a function Azura was giving in appreciation of all the people who participated in the recent Walk to End Alzheimer’s event. The audience would consist of residents, staff, family members of the residents, and walk volunteers. I nervously accepted, never having taken on that role. I was anxious for another reason as well: MC’s are supposed to be humorous, but I had mostly lost my sense of humor during the five years Pat and I encountered Lewy Body. As one of friends said, “Ron, you aren’t as funny as you used to be.”

          I dutifully went online and found three good short jokes. Here they are:

  • Two cows are having a conversation. “Mooooo,” says the first cow. “Darn,” the second cow thinks, “that’s just what I was going to say.”
  • How are Nobel prize winners and farmers alike? They are both out standing in their fields.
  • Two slices of bread were getting married. All went well until someone called for a toast.

These jokes were sure winners. However, in the pre-Lewy Body days I was good at making my own jokes, albeit mostly bad puns. I decided to try again. I set my goal at creating a gentle dementia story, the kind that mixes humor with a tinge of sadness. Here’s what I came up with:

 

Dick and Jane are in their 70’s. Recently Jane has started having memory problems. So, one day when Dick comes home and asks for a cup of coffee, he wonders if Jane will remember to bring it. She soon comes out of the kitchen with a perfect cup of coffee, to Dick’s relief. However, Jane also brings a large chocolate cake still warm from the oven. Please have a piece, Jane says to Dick. He tastes it and says: “Honey, this is delicious. But you wrote on the cake “Happy Birthday, Dick, and it’s not my birthday.”

Jane smiles a little and says: “Maybe not, but it might have been.”

[Now the story can end there, or you could add this line from Jane: “Eat it all, Dick. Tomorrow also might be your birthday, so I’ll bake another cake.”]

          Why this story? Because I remember times when Pat tried to do something nice for me only to get it a little off, such as sewing a shirt button back on but at the wrong hole or cutting my hair haphazardly. I remember how awkward these situations became. I always tried to thank Pat for her effort; I never knew whether to encourage her to do more, on the theory that any activity that made Pat feel useful was good, or whether to gently discourage her from future attempts. I think in these two cases, I encouraged her sewing but discouraged hair cutting.

          And now, as I grieve, I wish Pat were here baking my birthday cake.

 

Ch.170 Empathy for A Couple Dealing with Dementia

Oct.2022

          Pat had only recently been diagnosed with Lewy Body when we happened upon a former colleague of ours, a psychologist named Richard. Pat mentioned she had dementia; Richard replied that his wife Judy had been diagnosed with Alzheimer’s Disease a couple years before. We met together a few times before the Covid epidemic isolated everybody. By the time contact was possible Pat had deteriorated badly and was at a memory care facility. And then Pat passed away.

          I was astonished over this four-year period by how slowly dementia seemed to progress for Judy (and, for that matter, in the last year, among the other residents with Alzheimer’s Disease at the memory care place). It felt like Pat and I were in a canoe racing through rough currents on a fast-plummeting stream while Judy and Richard were taking a more leisurely, though certainly unfortunate, cruise on an ocean liner.

          Since Pat died, I have begun dropping in almost every week at Richard and Judy’s home. I thoroughly enjoy sharing cups of coffee or tea with the two of them and playing with Lacy, their deliriously happy little dog. My role is completely different now: I am not a care partner of someone dying from Lewy Body Dementia; I am simply a friend watching a wonderful couple making the best of a difficult situation.

          It’s been a slow passage, but Judy has now reached the point where she has difficulty conversing meaningfully. Just like Pat, she begins to say something, falters, becomes confused, shrugs, and stops in the middle of her thought. Richard and I listen for hints of what she intended to say and then we respond: (“…yes, Judy, the trees are turning colors now”). We may not get it right every time but that doesn’t matter. The idea is to let Judy know we value her thoughts and feelings, that she is still contributing to the conversation.

Richard and Judy are a strong team. Richard is amazingly patient with his wife’s confusion and with her repetition of questions and comments. Judy has a love of life, and she is still playful at times. I feel sad watching Judy’s decline and nostalgic seeing them play out the same kind of loving scenes Pat and I enacted. I am honored to share their experience.

 

Ch.171 A Rainbow Appears Just When I Need It

Oct. 2022

          If nights are the loneliest times for a widower, then weekends come in a close second. Today, a Sunday, home alone, I was feeling blue. I had watched enough sports already this weekend to last a lifetime – baseball, football, more baseball… I was bored, and boredom makes me anxious. The weather was gloomy. A brief rain had just concluded but the temperature was heading toward freezing and a strong wind was blowing.

          That’s when my collie Levi showed up; he was also wanting to do something. For Levi, doing something these days means doing something with me, his only remaining human. I figured a brief walk outside couldn’t do me much harm so off we went, Levi galloping tail up into the wind while I bent over and slouched ahead. Physically I felt heavy, my feet hurt (I have plantar fasciitis), and I was ready to cry.

          That’s when I looked up and saw the rainbow. The sun was shining through the leftover droplets from the recent rain, scattering light into its component colors. There they were in their required order: violet – blue — green — yellow — orange — red. Vivid. A complete rainbow in that I could see both ends where it appeared to touch the ground. I began crying; Partly I was sad, remembering the many times I called: “Pat, come see the rainbow.” Pat would emerge from the house, and we would hold each other, silently watching. Partly I was crying with rapture; nature in all its greatness had gifted me.

          And then it was gone. I looked down and back up, but it had disappeared. I don’t think that rainbow lasted more than a few minutes since the rain that birthed it had ceased just before Levi and I left home.

          I needed that rainbow. It gave me a minute of joy, enough to hold back my sadness. So, I started home, there to be summoned by Lakota, my Quarter Horse, hoping for a treat. Dog, horse, cat (sleeping on a nearby chair as I write), rainbow. My life now feels more full than it did an hour ago.

 

 

Ch.172   Looking Ahead to an Uncertain Future

Oct.2022

          “Not me! I’m never going through this again!”

          I was speaking with a group of friends about how lonely I have been, when Elaine, a recent widow, made the above declaration. I had just mentioned that in a year or two I might start looking for a new mate, someone with whom I could share my life. That’s when Elaine spoke up. She was referring to the possibility if she remarried that she might have to go through a second grieving period; Elaine didn’t think she could survive it.

          Certainly, the risks of re-bonding are significant. For example, Lou, a man I met at Azura, had remarried at age 80 only to have his second wife develop Alzheimer’s disease within a couple years. And yet, I sense that he has no regrets.

          I’ve just had a vision of my father, Miles, reading the sports section of the St. Paul Pioneer Press, with his third wife, Minnie, close by, as he neared the end of his life. Dad’s first wife died from a heart condition in her thirties; he remarried, to my mother Esther, who died from cancer in her forties. Dad married a third time, to Minnie, my stepmother, who was herself a widow. I remember Minnie wailing “Oh, no, not again” when my father suddenly succumbed to a heart attack.

 I was only nine years old when my mother died, too young to sense my father’s second period of grieving. I wish now I had asked him whether the second round was different from the first (among many other questions I would ask if he were still living).

          And, for me, if going through another round of grief would be the price I’d have to pay, to find someone to love, as my father did, I believe I would have no regrets.

 

Ch.173 Pat’s Last Gift

Nov. 2022

 

          “Ron, you’re doing better than I thought.”

I’d just spent several hours with Jackie, a friend whom I hadn’t seen or talked with since Pat died four months ago. “I think I am doing pretty well,” I replied, “and that’s because of Pat’s last gift to me.”

That last gift was Pat’s allowing me to grieve each small step in her gradual decline. The first recognition that something was wrong – helping Pat with her paperwork, I realized she wasn’t writing treatment plans anymore because she couldn’t think abstractly enough to create a treatment plan; and then, the hallucinations that made me recognize Pat was losing her foundation in reality; later, Pat becoming lost in Palo Alto for over eight hours, which told me she could not drive any longer and I would have to keep her safe; and then, her need to be physically transferred by two persons from bed to wheelchair, informing me that her body was disintegrating quickly; nearing the end, Pat’s smiling when I came into her room but her inability to say my name; and, finally, watching Pat take her last breath on July 1, 2022, her gentle good bye to myself and her family. 

I grieved each of these losses, as well as many, many more, first denying each loss, then minimizing, and finally accepting each loss in its finality; No, these weren’t temporary losses that maybe a medicine might correct; rather, each loss was permanent and must be accepted. Pat would never think like Pat again; Pat would never walk; Pat would never be able to say my name.

And so, when Pat passed away, five months ago, she had prepared me for this inevitability. Still, of course, Pat’s death wasn’t just another small step. It was more than the equivalent of all those other losses put together. However, I believe our sharing each of those previous losses has helped me accept Pat’s passing and is allowing me to go more fluidly into the next chapter of my life.

         

Ch.174 Reading “Still Alice.”

Nov.2022 

          “Well, this could be interesting,” I thought, as I read an announcement for a “tough book” book club that meets monthly at the Eau Claire Public library. I signed up for it and then received a note announcing that this month’s book selection was “Still Alice,” by Lisa Genova. This is a story about a woman named Alice, a brilliant Harvard University professor, who develops early Alzheimer’s Disease in her late forties. In the next two years Alice becomes increasingly forgetful, loses her ability to think abstractly, gets physically lost several times, cannot identify her children, loses her employment, etc. I’d started the book once before and tried to watch the movie but both times I had quickly retreated. It was too painful considering Pat’s Lewy Body struggles.

          This time I did get through it. In fact, I started and finished it this morning in one manic four-hour stint. So many episodes in Alice’s fictional life paralleled the all too realistic events in Pat’s life. Alice getting lost a few blocks from her home equated with Pat calling me to help her find her way home from our office; Alice forgetting her children’s names reminded me of Pat’s inability to say even my name; Alice resigning her job compared and contrasted with Pat’s being forced to resign because she couldn’t do her job any longer; Alice’s husband John’s denial and minimization followed by anguish and finally a measure of acceptance was a journey I travelled.

          Reading this book helped me see better what was happening to Pat from the perspective of the “patient” rather than from that of husband and care partner. Alice recognizes what is happening to her as it happens. She counts her losses and understands that these losses are permanent and that there be many more ahead. And, just as with Pat, Alice seems to be able to accept her fate even as the people who love her struggle to do the same.

The “Tough Book” club meets in two days. I plan to attend, hoping I won’t break down in tears.

Ch.175 Remembering Pat During the Holiday Season

Nov.24, 2022         

I’m writing this chapter on Thanksgiving Day, between visits from first Cindy and then Joshua and Jenny. I’ve heard frequently that holiday season is especially hard for mourners; so far, though, I’ve enjoyed seeing the people I love.  I have had a few tearful moments but no more than most days.

I have just re-read the passage I wrote (and Jenny read) for Pat’s funeral. I’d like to share that here now.

                Like all couples, Pat and I had personality characteristics that were both matched and unmatched. Two shared traits were a tremendous love of learning and a desire to live meaningful lives by helping others. But we also had our differences. Here is an example. One day we were sitting in the living room. I noticed that Pat had put a new picture of our beloved dog Franklin on the wall. But something seemed wrong. I turned to Pat and said: “Honey, that picture you just hung up is tilted. I’ll fix it.” I started to rise when she intercepted me: “No,” Pat said, “I like it that way. That’s how I hung it.”

            Did you know that highly creative people like Pat prefer asymmetry to symmetry? That’s what the research says. To use a baseball analogy, they prefer “crooked numbers” to straight ones. I myself instinctively prefer symmetry and straight lines. But over the years Pat taught me to value crooked numbers, tilted pictures and even driving down unmarked dirt roads to get a little lost.

            Pat’s asymmetrical impulse did occasionally create problems.  At home Pat could be unpredictable, compulsive, and disorganized. At work Pat sometimes had difficulty sticking to mundane tasks such as billing and writing case notes. However, it was exactly those things that made Pat harder to live with that also made her unique and special.

            At home, Pat was the emotional center of our family. She brought us joy, curiosity, and creativity. At work, Pat helped us remember that serving our clients was what we were there for, and that making a good living was secondary.

            There are many individuals, including her clients, who say that Pat changed their lives, helping them heal at the core of their being. I would add my name to that list. Early in our relationship Pat sensed a level of compassion inside me that I didn’t know existed, and then she gradually helped me connect with it. She helped convert me from a cynical and rigid person into a more emotionally open and caring one. Meanwhile, my self-appointed job was to keep Pat’s feet on the ground, to complement her airiness with my steadiness. We worked as a team to make both our lives better.

            I am thankful on this Thanksgiving Day that I was able to share the greater portion of my life with Pat.

 

Dec. 14: Added Note: I now know it’s not the day of a holiday that hurts the most: it’s the day after the holiday.

 

Ch.176 Walking to the Creek to Talk with Pat

Nov. 2022

            Today is the day after Thanksgiving. I’ve heard many warnings that the first holiday season is particularly difficult for grievers. But I wasn’t expecting to wake up this morning with a crushing heaviness in my chest.

Yesterday, Thanksgiving Day, went well. My daughter Cindy dropped in with her family in the morning, and then I spent the afternoon and evening with my son Josh and daughter Jenny and their families. Josh’s wife Patty and her family are from El Salvador; I was treated to special Salvadoran turkey sandwiches and a lively mix of Spanish and English conversations.

This morning, alone, was different, though. I woke up feeling odd, realizing something unusual was happening. And that’s when I began feeling as if someone were sitting on my chest. It's hard to express this feeling, although I’m sure you’ll recognize it if you’ve gone through intense grief. Crushing; heavy; painful; unyielding; demanding. “Stop everything else,” it says to me; “You must face your loneliness.”

I texted Sue, my fellow Lewy Body griever, who was also going alone through her first holiday season; she too was feeling the post-Thanksgiving Day impact. That’s when I realized I needed to talk with Pat. So, Levi and I set out for a little bridge over a little creek named Big Creek about a quarter mile from our house. Pat and I had talked frequently on that bridge, in addition to throwing pebbles over the railing where our big black dog Merle waited below to catch them.  

            I told Pat how much I missed her. I filled her in on recent events, such as Levi catching Kennel Cough. I doubt the words mattered. Nothing magical happened. I didn’t sense Pat’s spiritual presence. And yet, the heaviness in my chest did lessen, enough for me to continue our conversation as I walked home. Right now, I feel just as lonely as I did before my walk, but, paradoxically, I feel less alone.

 

 

Ch.177 The Universality of Grief

Dec. 2022

            I attended a program on grief recently during which RoseAnn, a hospice chaplain, read a beautiful passage that emphasized how each person’s grief was unique. “No two people experience grief in exactly the same way,” she read. RoseAnn’s point was that since each person’s grief was distinct from all others, nobody has a right to tell that individual what he or she should do or feel. “There is no right way or wrong way to grieve, just your way,” she said. RoseAnn was making a good point, and in doing so encouraging each of us to ignore people trying to tell us how, when and where we should grieve.

But something felt a little off. The image that came to me at that moment was of Frank Sinatra belting out “I did it my way.” “I did grief my way.” But, if that is the case, then why am I attending a grief group, sharing my pain with others as they share theirs with me?

It wasn’t that RoseAnn was mistaken, I felt. But I believed the author she was quoting was over-emphasizing the individual, particular aspects of grief at the expense of the universal, shared components. The heaviness in my chest; the emptiness in my gut; the loneliness in my heart; the “This can’t be true” disbelief in my mind --- when I mention these experiences to my fellow grievers, they don’t just nod their heads in sympathy. Instead, they say they feel those same sensations in their chest, gut, heart, and mind. I believe them because I feel those sensations when they share their thoughts and feelings with me.

When I was counseling, I studied what is known as the attachment model of human connection. The word “attachment” initially refers to the way mothers and their newborns bond. Normally, the message they share is far deeper than words; the closest we can approach is “You are part of me, and I am part of you. I will never leave you. You will never leave me. We are one, forever.” Fortunately, this bond isn’t limited to mother and child. I certainly felt it and still feel it with all three of my children. And, crucially, I felt this deep loving attachment bond with my wife. Not immediately, of course, but over time we found a place in each other’s souls. Forever.

But there is another part of attachment that is relevant to grief. Think of the infant firmly attached to mom and dad. And then mom and dad try to go away for a while, maybe to a movie. And what does that baby do? She protests. She screams, she gasps for air, she cannot be comforted. She feels utterly abandoned. And that’s perfectly normal. She’s doing what she’s supposed to do, to bring her mom and dad back. Maybe she can convince them not to leave her. Pat and I succumbed, the first time we tried to get away for a break. We paid the babysitter and took our baby with us to the nearby pancake parlor.

Mother and child cannot stay physically together indefinitely, of course. Parents do leave their child; the child protests, then despairs, and then rejoices when her parents return. Unfortunately, my wife will never return. I know that. But still, I protest and despair. “No, don’t leave me.  Come back. I need you. I am incomplete. I am broken without you.”

The attachment bond has genetic, biochemical roots. The conviction that “I can’t live without you” is a normal feeling upon separation. I believe this attachment crisis is the universal element that all grievers hold in common.

 

Ch.178 First Christmas Without Pat

December 26, 2022

            Today is the day after Christmas, but many stores will be closed since Christmas fell on a Sunday this year. Although I certainly missed Pat throughout the weekend, I am grateful that my weekend was filled with loving and caring people.

            On Saturday I had planned to drive 100 miles to Rochester, MN to spend Christmas Eve Day with my daughter Cindy and her family. The Gods of Winter had other ideas, I guess, because a big winter storm brought a minus 30 Fahrenheit wind chill with 25 mph winds and blowing snow to Wisconsin. Instead, I got a surprise phone call from my neighbors Bobbie and Mark, inviting me to share dinner with them, their two sons and their partners, plus Bobbie’s brother and sister-in-law. Mark and Bobbie have been wonderfully supportive of Pat and my Lewy Body journey; during dinner I knew I could mention Pat’s name without bringing the conversation to a halt. They too could speak easily about some of the painful issues they are facing as a family. I am blessed to have these good people as neighbors.

            Then yesterday, Christmas day, I was able to drive to Eau Claire to have dinner with my daughter Jenny and her husband Jeff and daughter Beth (just back from her first semester in college). We ate and watched the Packers play football. Only once did I become tearful, and Jenny was right there with a comforting touch when that happened.

            I even received a visit from Chastity, my colleague for several years at First Things First (our counseling clinic), and her family. She thoughtfully brought me a small grilling stone, a useful implement for a single cook. Another surprise that helped me feel especially cared about on this first Christmas without Pat.

            I know I wrote a little while ago that the day after a holiday is harder than that day itself. That was just after Thanksgiving. But so far today has been ok. Also, by chance, my grief group is scheduled to meet this evening and Wendy, its facilitator, has kindly offered to run it even on her day off. I’ll meet with Sue, another group member, to share a meal just before the group, so today won’t be spent entirely alone.

            Next up is New Year’s Day, which is the six-month anniversary of Pat’s death.  We’ll see how that goes.

 

Ch.179 I Still Cannot Separate “Alone” from “Lonely”

Dec. 2022

            Pat passed away on July 1, 2022. That means her six-month anniversary will be New Year’s Day: Jan.1, 2023. When I mentioned this to my friend Earl, I told him the time seemed to have passed quickly, much to my surprise, despite slow periods when I feel sad and lonely. Earl quoted a friend of his who had spent several years in prison: “It lasted forever but it was no time at all.”

            There have been many slow times, especially the periods when I am alone at home: little to do, not enough energy to do anything anyhow, watching too many sports programs, grazing on sweets, crying in spurts. But then there are faster times: visiting friends, practicing colored pencil drawing, making a tasty salad, taking Levi to his doggie day care appointment, putting together jigsaw puzzles with Jenny, playing board games with Joshua, texting and talking with Cindy, attending support groups.

Just looking at these two lists tells me that I am still adjusting to living alone. I have yet to break the bond between “alone” and “lonely.” Maybe I never will.

When we lived together, especially after Pat developed Lewy Body Dementia and I became her care partner, I often felt exhilarated when I had time alone. “Now I can do whatever I want,” I’d think. For a little while I could set aside my worries about Pat’s health and my sadness over her cognitive decline. I would read the newspaper at the local bookstore or eat lunch at a nearby sub shop. The words that came with alone were “relaxed,” “free,” and “relieved.”

But now the words I associate with alone are “anxious,” “empty,” and “depleted.” Not always, thankfully. Sometimes I enjoy being alone. But when I face the prospect of “enduring” a relatively long period by myself, sometimes I become panicky. Today, for example, a winter blizzard is beginning to envelop western Wisconsin. The roads will soon be closed or too dangerous to drive. My usual Thursday social engagements, namely lunch with a friend and coffee with my son, have been cancelled. So, just before the blizzard was predicted to strike, I rushed my dog Levi into the car and drove us to the nearest McDonalds Restaurant (15 miles each way) to share a couple cheeseburgers. I was doing something, and doing things keeps the loneliness away. Then on the return trip I bought a cherry pie from my favorite pie place (The Norske Nook). When I got home, I made a list of all the things I could do in the next few days. But the only items on the list that attracted me were the interactive ones: calling my brother and writing this blog (When I write I feel connected with my readers). The others, such as pencil drawing, are more at the “Yeah, I could do that, I suppose I’d like it” level of enthusiasm.

Anyway, writing has helped me feel better. And the blizzard is now two hours done – only 46 hours to go!

 

 

Ch.180 Pat’s Been Gone Exactly Six Months Today

          Jan.1, 2023

 

“Not all who wander are lost. Some of us are just out looking for magic and rocks to add to our collection.” *

(* Jasmine L@CrystalLoversTribe)

Today, Jan.1, 2023, happens to be the exact six-month anniversary of Pat’s death on July 1, 2022. Happy New Year indeed.

I knew I didn’t want to face this day entirely alone. So, I invoked my three-child support system in preparation for what I thought might be a difficult day. First, I took some time talking with Jenny about the upcoming date; then, I arranged to visit Cindy and her family in Rochester yesterday; and then, today, I met over breakfast with Joshua and Patty.

Half-way through breakfast, Joshua showed me a text he’d in turn received from a colleague in the social work department. It included the phrases I copied at the beginning of this essay. That saying perfectly captures Pat’s spirit. She always wandered around, hoping to get a little lost, and she usually emerged from these journeys with a rock (or six) to add to her collection. I suspect she found plenty of magic along the way, although she didn’t share much of that with me due to my inherent skepticism (which I now regret).         

I live alone. And I am lonely. That is an unavoidable aspect of loving and losing my wife of 56 years. But I still have many of Pat’s rocks to honor my beautiful wanderer.

In some ways, today is just another day – but it isn’t. It’s an important marker because calendar dates and passages have always been significant to me. Six months isn’t very much time, certainly not enough to feel that my grief work is anywhere near completed (as if it will ever be completed). I still find myself tearing up every day, albeit for shorter periods than before. I do laugh more than at first, mostly chuckles at clever writing from the fiction authors I read. People tell me they are surprised by how well I seem to be doing, by which I think they mean they didn’t realize I’d be able so soon to develop and maintain friendships, volunteer at Azura (Pat’s memory care facility), and work to become more proficient at my hobby, colored pencil drawing. I have mostly kept my depressive tendencies at bay, although I do sense they linger nearby.

After breakfast with Joshua and Patty, I went shopping and almost immediately ran into Betty, a friend of mine from my dementia support group. Betty shared her dismay at finding her 80-year-old husband placidly coloring in a children’s coloring book; that triggered a strong memory I have of Pat happily holding two dolls in her arms. Pat was smiling, content, and looking a little lost.

Pat loved to wander. Maybe Lewy Body created another path in which Pat could explore, get a little lost, and discover some magic. Perhaps that’s why Pat never seemed scared of her dementia.

 

Ch.181 The Shape of My New Life Is Emerging

Jan.2023

          Something important has happened over the last two days: I can clearly see the outline of a new, highly satisfying life coming into shape. It consists of four parts:

  • An active social life. Today I spent several hours just talking about meaningful events in our lives with two good friends, one of whom I’ve been seeing for years (AnneMarie) and another whom I’ve known but not well until today (Kathy). I already have more friends than I’ve ever had before in my life. Some of these friendships are from my married life and are with couples (Ed and Judy, for instance, friends for at least 30 years); some are “singles” from Azura (John, whose mother resided at Azura the same time Pat was there) or my Lewy Body community (Sue, whose husband died from Lewy Body) ; I’ve connected with others because of my membership in the Eleva-Strum Lions Club (Forrest and Jeannie). I’m realizing that I have a great desire for emotionally relevant conversation and that many others have that same need.
  • Enjoyment of my time alone in the country. This morning I fed my horse Lakota and later set out some hay for him. Walking over to his hay bin, I called to him, and he enthusiastically neighed back. My cat Blackie laid on my lap while I read in bed. My dog Levi followed me around the rest of the morning, until I dropped him off at his day care center while I went into Eau Claire. I love my animals and am amazed that our four species have forged a good life together. I know the lifestyle we’ve created cannot continue forever; after all, I am 78 years of age and gradually (or, possibly suddenly, because of some illness or accident) there will come a time when I will be unable to manage my household duties and responsibilities. But right now, I can manage things just fine.
  • Volunteer activities. I’ve begun my role as a volunteer “family-staff liaison” person at Azura, Pat’s memory care center. I may look for other volunteer engagements as well, much as my daughter Jenny has found several places where she can help people in ways that feel good to her. Volunteering offers a chance to do “meaningful” work but, frankly, I do it just as much because I like talking with the family members and learning more about the twenty individuals who shared their lives with Pat.
  • Family. I have spent far more time with my children now than before Pat became ill. We contact each other at least once a week (in person or on the phone), often to discuss our shared grief but also just to enjoy each other. They are the people I send my colored pencil sketches to review, in lieu of being able to show them to Pat. My three brothers and their wives are also important to me; we connect regularly via Zoom and I know they are supporting my new journey.

     I’m feeling alive as I write these thoughts. Excited. Energized. I also can guess what Pat would say about now: “I’m happy for you, honey; just don’t ever forget me.” And I won’t.

 

Ch.182 Watching My Name is Otto. Don’t Go Alone

January 2023

             I mentioned to my daughter Jenny that I was interested in seeing Tom Hanks’ new movie My Name is Otto.  She warned me that there was a scene at the cemetery and asked if I was prepared for that. I told her I believed I was ready (I had read the book –a Man Called Uve- which was light-hearted with a touch of sadness). I anticipated watching a “Night at the Museum” style movie starring Ben Stiller. I forgot that Tom Hanks is not Ben Stiller. I did decide to attend the movie with others, so I went with my friends Judy, Ed, and AnneMarie.

          I don’t want to give the plot of the movie away for those of you who haven’t seen it. But, if you are in a grieving process, be aware there are several scenes that focus upon grief and grieving, both well- and poorly handled. These scenes are handled artfully, not overblown, but that only makes them feel more familiar and realistic. And, as Ed noted, really the entire film is about the grieving process.

          Frankly, the movie was painful to watch. I teared up on several occasions, both when scenes reminded me of good times I had with Pat and when they triggered feelings of emptiness in my life since Pat died. It helped that I was tucked in beside my good friends. I knew they would be concerned for me and ready to support me both during and after the movie.

Based on my experience I would say that “A Man Named Otto” is a “Don’t do this alone” experience for anyone in early grief. I am glad I decided to see it, though. I certainly don’t want to avoid situations that make me feel sad. There are too many of them. I think I’d end up totally isolated and seriously depressed if I did. My personal hope is to fold my grief into my new life. I am a widower; I will always be a widower; But I am also a whole human being ready to experience the world.

 

 

Ch.183 I Am a Witness Who Can’t Witness

January 2023

Two years ago, my good friend Howard told me he’d been diagnosed with an extremely rare and possibly lethal form of blood cancer. However, he was almost completely symptom free for one year because he’d been treated with a new cancer-delaying medicine. Unfortunately, the medicine quit working a few months ago, which led to chemotherapy treatment that again helped hold off the worst symptoms. But now the chemotherapy seems to be failing and his cancer has metastasized to other parts of his body. Howard’s current symptoms include overwhelming fatigue, weakness, and neuropathy in his hands and feet, necessitating a stay in the hospital. The next step in his treatment will be radiation therapy, beginning soon. Hospice, too, has been called into service.

I was Pat’s primary care partner for most of the five years she endured Lewy Body Dementia. I seldom had time or energy to consider how Pat’s illness might be affecting so many other people who cared about her: my children, of course, and my brothers, but also friends, former clients, professional contacts, and other relatives. But now I am in that position with Howard. And it feels strange because there are significant differences in this experience.

First is the matter of physical contact. I was with Pat almost every day. But I cannot even visit Howard because of the hospital’s strict visitation rules. Only selected family members can attend, which of course is necessary in this era of Covid, flu, and respiratory infections. But, boy, I sure would like to see him right now. I miss Howard. Seeing him might be comforting for him; but, greedily, I have to admit it might be reassuring to me. At least then I would know more exactly how he is doing whereas now all I can do is wonder as I wait for his wife Kay to call me, when she can find the time and energy.

Second is my feeling of helplessness. I was Pat’s advocate. As such, I was in constant communication with her doctors, nurses, hospice staff, and memory care people. I even had the last word on which medicines and treatments Pat could have, although I certainly deferred to those more knowledgeable authorities most of the time. This time, as only a friend, I am powerless to influence his life. Again, that is as it should be. I’m not making a claim. It’s just painful not to be able to fill my emptiness with action.

Third is the realization that others will suffer far more than I when Howard passes away. I will be losing a friend, albeit a very good one. How can that compare to losing a husband or father?

Right now I feel like a witness who can’t be present to witness and a doer who can do nothing at all. I can only hold Howard, and his family, in my heart, and that must be enough.

 

Ch.184 Time Is In My Hands

Jan.2023

I woke up a couple days ago, looked at my calendar, and discovered no activities scheduled for the day. No friends to visit; no volunteer activities to participate in at Azura Memory Care Center; no colored pencil exercises to practice; no family gatherings to anticipate; no book club meeting (for that matter, no book – I had just completed the month’s reading assignment). No blog piece to write or publish. And, of course, nobody to care for since Pat had died six months ago.

“I sure have a lot of time on my hands,” I thought, immediately becoming anxious.

         And then, a new thought. What if I said: “I have a lot of time in my hands?” Instead of time weighing heavily on top of my hands I could instead be cupping time in my palms; instead of being controlled I could take control; instead of being frightened I could be excited. As my son Joshua explained to me, I had created a paradigm shift in my thinking.                Paradigm shifts are rare occurrences; they offer a person a chance to relate to the world in an entirely new manner. In this case I can embrace free time instead of dreading it. I can choose to envision a wealth of opportunities within my free time: cooking and baking; reading; walking; napping; visiting; playing with my animals; watching sports; drawing; volunteering; meditating; learning; blogging… The list of possibilities is virtually endless.

So, now let me get realistic. I can’t just shift paradigms by snapping my fingers. It isn’t that simple. I need to consciously choose to take time into my hands whenever I don’t have anything specific planned. “Time on my hands” only becomes “Time in my hands” with an act of will. However, this act of reframing my situation should become easier the more times I make that choice. Hopefully, my new paradigm will gradually become a strong habit, in which case I will have more joy and less fear in my life. 

Added note, February 2023. In the last few weeks, I have been practicing imagining time being in my hands on those occasions when I’ve had unplanned blocks of hours to fill. I’ve noticed I’m less anxious than previously in these situations. I’ve also discovered that I can better handle the idea of having “nothing” to do. For someone who has always seen myself as a “doer,” this is quite amazing.

 

Ch.185 Spreading Out My Need for Affirmation

          After Pat died, I took up a new hobby: colored pencil drawing. That was somewhat of a stretch, given that I lack any native artistic ability. I can’t draw a decent circle by hand, and understanding one-and two-point perspective, much less using them, is perplexing. I did start with one asset, however. My years of painting adult paint-by-number pictures had greatly improved my hand-eye coordination. So, surprisingly, I’ve gotten off to a pretty good start. I’m taking lessons through a Great Courses dvd class, going along slowly and painstakingly.

          A week ago, I created, with much help from the teacher, a nice picture of two cherries, complete with shadows, boldness (each is about 5” across), depth, and a mixture of red shades (My teacher forbids her students to ever use just one color. Every portion of the picture, even the background should be a blend of at least three or four colors.)

          There are some people in this world who could create an object of beauty, say something to themselves like “yup, that’s pretty good”, and go on to their next challenge without showing the piece to anyone and without needing any sort of external validation. I am not one of them. I need to show my creations to relevant people, hoping and expecting to receive some form of “Ron, that’s really nice. Good job!” I don’t know if my need is excessive; maybe I suffered from “affirmation negligence” growing up. I do know that hearing words of praise makes me feel affirmed not only for what I’ve done but also for who I am. Those generous words are the ultimate antidote for shame.

          But I have a problem. Pat used to be the person I could go to for immediate affirmation. For example, just about every night, after I spent an hour on my paint by numbers piece, I would take the painting to her, point out the new parts I had just completed, and bask in her praise. I could count on her to attend to the work in detail, so I would receive not a “Yeah, good job, babe” but a “That light brown really fits in nicely with the dark green in the leaves and you painted that thin blade of grass perfectly.” Occasionally, Pat would notice something that needed correction and she didn’t hesitate to tell me so, although she was always tactful in her criticism.

Now there is no Pat. She is gone, forever.

I have two options. First, I could recruit someone to be my #1 affirmer almost all the time. That person would be called my wife. Unlikely, at least for now.

The second option is to spread my need for affirmation around, getting portions from my children, friends, brothers, acquaintances, and extended family. That’s what I’ve been doing, with good results. It’s not the same, though: no single person can replace the warm feelings that came with Pat’s praise. Oddly, not even receiving cumulative affirmations from many people is as powerful as were Pat’s words of praise or criticism. For one thing, much of the praise comes from a distance, such as when I send them a picture via smart phone, and they respond similarly. Mostly, though, Pat’s praise (and criticism) came folded into five decades of togetherness. But now I’m sounding unappreciative. And that’s a mistake. Frankly, I don’t know what I’d do without the loving and kind affirmations (and occasional criticisms) of the people in my life.

By the way, I try to affirm others a lot. The other day I kept telling my daughter Jenny she was doing a good job every time she placed a puzzle piece into the puzzle. After about the tenth “Good job” she laughed. And then she started saying “Good job” to me. I felt truly loved and understood.

 

Ch.186 A Joyful Musical Memory

January 2023

          Last night I watched a PBS special show about the singer and pianist Roberta Flack. Her breakthrough song was entitled “The First Time I Saw Your Face.” I went to YouTube to listen to it. The first two lines are: “The first time ever I saw your face, I thought the sun rose in your eyes.” Those lines brought me back to the first time I ever saw Pat’s face, when I was 18 years old. Sixty years ago. We had each won National Merit Scholarships to Macalester College in St. Paul, and Time Magazine was doing a photo shoot on Macalester’s success in getting Merit Scholars to come there. I still recall the moment I saw her. I can’t say I thought the sun rose in her eyes, though, nothing that romantic. But I sensed that she was special when she smiled. Two years later we began dating (In between, she dated another Merit Scholar from the same photo shoot).

          After listening to Roberta Flack, I gravitated to Allison Krause as she sang “You Say It Best When You Say Nothing at All,” a song that triggered memories of Pat’s last days, when all we could do was hold hands, when that was how we could still share our love. That memory was bittersweet, of course, and I was overcome by a wave of sadness. By then it was almost midnight, and I faced the prospect of going to bed lonely.

          Fortunately, I noticed on the YouTube option list a piece played by a fiddler named Natalie McMaster, an exceptionally talented individual who plays music that originates in her Cape Breton (Newfoundland) homeland. McMaster had appeared once in Eau Claire, at least fifteen or twenty years ago, and Pat and I had gone to see her perform along with three other fiddlers from different regions of the world. Cape Breton fiddling is fast, playful, and captivating. Last night I watched McMaster and another fiddler play together for at least fifteen minutes straight while their audience laughed and kept time with their hands and feet. As they played, I remembered Pat and I laughing and smiling when McMaster began fiddling that night in Eau Claire. And soon I was smiling and keeping time to the music again.

          If you want to hear some joyful fiddling, search You Tube for Natalie McMaster and Mary Frances Leahy at Red Shoe Pub.

 

Ch.187 A Note to Judy

Judith

 

This morning you woke up not feeling well.

 

I asked if I could help.

 

You said yes; I said come over.

 

You moved to my side,

 

laid your head against my chest

 

letting my arms encircle you,

 

my hand holding your head to my chest.

 

I felt you breathe deep and relax.

 

I know you could feel my breathing,

 

 feel my heart beating,

 

feel the warmth of my body.

 

I asked how your tummy felt;

 

you said “better”.

 

I think you could feel my tears

 

as I wondered who will hold you

 

when you wake up with pain.

 

Who will hold you so you know you’re safe

 

and your tummy feels better.

 

Ch.188 I Can No Longer Keep Lakota Safe.

February 2023

          My horse is named Lakota. He’s a “quarter horse,” a type bred to run exactly one-quarter mile in races. Lakota cannot be ridden because he has an injury causing him to stumble occasionally. That’s how he became a member of our family, as a rescue from a family that wouldn’t keep a “useless” horse. Lakota came our way about twenty years ago.

          Lakota has lived all these years on about five acres enclosed by a four-layered wire fence. No problem. He escaped only once or twice during that period, due to human carelessness. But then, this December, we had a massive snow fall. The snow was so deep that Lakota one day simply stepped over the fence. Apparently, Lakota had an epiphany right then. “Hey, this fence is an illusion. I can jump over it or walk through it any time I want to.” And that’s exactly what’s he’s been doing ever since. Once in the first week. Once again, the next. Twice last week. Three times in the next two days. I’d been able to lure him back to his enclosure each time, with treats, but with increasing difficulty. During the last incident he balked at going into his stall, veered off several times, and only resignedly entered when I put all his treats inside the stall.

          That afternoon I realized, painfully, I could no longer keep Lakota safe. Up to now he had headed to my bird seed containers, but soon the snow would melt and he might start eating grass anywhere. He might wander into the road where he could get hit by a car, endangering its occupants. And I might get hurt trying to “muscle” a 1,200-pound beast into his stall. My conclusion was I needed to find Lakota a new home, immediately.

          Finding an elderly horse a safe haven isn’t all that easy, but the Gods were kind. I called the Osseo veterinary clinic; they recommended a woman named Samantha; Samantha has a special area reserved for older horses (a senior paddock) and she had an immediate opening; within hours I found someone to transport Lakota to her farm. The whole process took less than 48 hours. Lakota is, as I write, working out his place in the equine hierarchy of about a dozen animals. This will take a few days, according to Samantha (I think maybe more since Lakota hasn’t lived with other horses for two decades), and then I believe he will be happier than he was in our little family.

          Here’s what I am already missing:

# How Lakota kisses my hand softly as he takes a piece of apple or carrot.

# Seeing Lakota race my dog Levi, each on opposite sides of the fence, as I walk to Lakota’s feeding place.

#The good physical feeling of carrying a 50-pound bale of hay to his feeder.

#Lakota’s loud whinnies as he responds to my calling for him and when he sees me drive into my driveway.

#The sense I was leading a more meaningful life by caring for this beautiful, vulnerable animal. Nurturing my horse, cat and dog has been especially important for me since Pat died.

          I do feel a great sense of relief, though. I have protected Lakota the best way I could by finding him a safe place to live out his remaining years. And Levi and I can visit Lakota – he only lives about 10 miles away - a nice country drive.         

 Lakota is like a child who has grown up now, an adult ready to join a new family. Now it’s up to him to make a good life. And I’m the empty-nester parent waving good-bye and hoping he’ll remember me.

 

Ch.189 Things Fall Apart.

February 2023

          “Things fall apart. The center cannot hold.” This famous phrase, the beginning of a poem written by William Butler Yeats, perfectly reflects my current state. Way too much has happened during the last two weeks. I feel a deep sadness at the center of my being. I woke up wordlessly crying this morning, feeling overwhelmed.

          My friend Howard died last Thursday. My friend Richard was given 24 hours to decide whether to place his wife in memory care. My horse Lakota wasn’t adjusting well to his new placement in a senior paddock (an enclosure for older horses), mostly because one other horse kept bullying him. I’ll discuss these three situations in reverse order.

          Lakota. I was assured that Lakota would adjust within a week to his new situation. But each time I visited he was obviously terrified of the dominant horse in the paddock, a small but fierce female. Remember, Lakota hadn’t been around other horses for most of the last twenty years. He didn’t know what to do to protect himself. All  week I woke up in the middle of the night worrying about Lakota. Finally, I called Samantha, the ranch owner, to schedule a talk. But when I visited just yesterday the bully horse was gone. Samantha had seen what was going on and had solved the problem by moving that horse. Lakota looked more comfortable; he came up to me immediately, looking for apples, just like he did at home. Now I could relax – if I could.

          Richard and Judy. I’ve been visiting Richard and Judy every week for at least a year, driving to their home where I could enjoy the company of Richard, his wife Judy (who has advanced Alzheimer’s Disease), and their small dog named Lacey. During this time, I’ve observed Judy’s progressive mental deterioration and Richard’s progressive exhaustion. Judy’s name had been on the waiting list at Azura for a while, but each time a space was available Richard chose to keep her home. This time, though, he realized it was time to say yes. But rational awareness is not the same as emotional preparedness. Watching Richard’s indecisiveness was painful, knowing that only he could make the choice he needed to make.

          Howard. As Howard’s cancer progressed, I began visiting him twice weekly. But now he had come home from the hospital to die, and his many friends and family members were rushing to see him one last time. My final visit was last Tuesday. I had made a key lime pie, our favorite treat, and he was able to eat a few bites. We debated whether the pie was tart enough, as usual. And then Howard needed to rest. He died two days later. His wife Kay and her family invited me to join them for breakfast the next day, an honor I gratefully accepted.

          As I write this essay, I’m realizing why my “center” isn’t holding. It’s mostly grief, but also that my basic routines in life have been disrupted. Howard, Richard and Judy, Lakota: I had established patterns with each of them. Twice a week visiting with Howard; once a week visiting with Richard and Judy; twice a day with Lakota (morning feeding and afternoon treating). I’ve always been a person who likes/needs routines. Regularities like morning cinnamon toast shared with Levi, my collie; Sunday mornings at the pie place with Ed and Judy; going into town every Tuesday and Thursday. These established patterns help me feel grounded. They’ve been particularly crucial for me in this first year of grieving Pat, as well. I may not know what the future holds in this transitional period but at least I’ve had these routines I could count on to help me feel safe.

          Right now, I feel sad and lost. Empty. Missing my friend. Missing my routines. Missing Pat even more than usual. I know this feeling will not endure. Soon my sense of hopefulness and my capacity for joy will return. But, for now, things have indeed fallen apart.

         

 

Ch.190 Doing OK But a Little Empty

March 2023

 

          By chance, I saw Pat’s cousin Cheryl as I entered the church where a concert raising money for Feed My People was taking place. Instead of asking how I am doing (A question I never know how to answer) Cheryl just made a statement: “I imagine you’re doing OK but feeling a little empty.” That’s about the best summary of where I am now, eight months after Pat’s death, as I could ever say. Except for one word: “little.” Because the level of emptiness I feel varies on a daily, hourly, even minute by minute basis. The emptiness gauge fluctuated several times during the concert, rapidly climbing from low to high when some particular lyrics hit a nerve (Such as “I’m going home”), then receding back toward “little.”

          I find this situation ironic because fluctuation is the hallmark of Lewy Body Dementia. During those five years of affliction, Pat’s physical, mental, and emotional states varied erratically. Now it’s my turn, except this time it’s that feeling of emptiness – loneliness – that varies erratically, often without a specific reason. Suddenly, without warning, here comes a hollow sensation in my gut, or a heavy feeling in my chest, or an endless sigh, or a trickle of tears. Or all four. It’s dangerous to think about Pat in public, much less talk about her, because I can’t contain these emotional cascades. True, most of the people I spend time with know what I’m been dealing with; they are not afraid of my feelings. It’s me who is afraid of those feelings, not them. Not the feelings themselves, though, but my lack of control of them. It would be easier if I could just schedule a good fifteen minute cry, in private, once a day. First breakfast, then walk the dog and cat, check e-mail, break down crying, read a book…

          Emptiness is just one part of grief but in my experience nothing about grief runs on schedule. As you may know, I really like schedules and routines. It doesn’t matter, though. I’m not in charge.

 

Ch.191 Three Acts of Generosity Help Me Feel Hopeful

          March 2023

          Yesterday began with worry. Two days ago, Levi, my elderly collie, temporarily lost the ability to jump. He wandered around looking confused, trying to convince his back end to leap onto the couch or bed. But nothing happened. He looked at me for help but growled when I tried to lift him. Confused, in pain, he told me to stay away. He’s been diagnosed with hip dysplasia, and his condition had suddenly worsened.

[Added note: Levi regained his jumping ability a few days later. Ironically, now I’m the one who can’t jump – I’m having a round of hip bursitis.]

          I went to breakfast with friends after feeding Levi a meatball with a pain pill inside it (Levi loves meatballs. I love making them for him). That went well, but when I came home, I discovered a message from my friend Marie asking where I might be, as opposed to meeting her at another restaurant. I had forgotten our meeting. And that’s when the day’s first act of generosity occurred.

Just as I tried to reach her, Marie knocked on my door. She had become concerned I might be in trouble as I now live alone. Marie drove several miles out of her way to make sure I was ok, and then she stayed to talk as if that had been the plan all along. Marie’s graciousness was truly a generous action, helping me remember that everybody screws up from time to time and kind people accept that reality and move on.

Marie and I talked about our pets, both living and deceased. Then we discussed my hobby, colored pencil drawing. Marie mentioned that she had once drawn a lot and that she would like to get back to it. That gave me a chance to do something nice, namely give her a handful of colored pencils to encourage her to start drawing again. That was a small act of generosity on my part, the second act of the day.

Later that day, I dropped Levi off at his day care place (we struggled to get him in the car, but he did allow me to lift him). Then I drove to Azura, Pat’s memory care center where I have been volunteering. After saying hello to several residents, I mentioned to John, the center’s technician, that Levi was hurting. He immediately offered me a staircase he had built for his dog with hip dysplasia, now passed away. I’m going there today to pick it up. If I could train Levi to use it, he would once again be able to get off the floor. And that was the day’s third act of generosity.

There is a lot of research indicating that performing acts of generosity helps people feel better about themselves (and, I’m guessing, more optimistic about the world). And, for me, receiving someone’s generosity (behaviors or words) also creates positive feelings, including a sense of connection with the world. Generosity builds trust, too. So, I’m about to head off, with Levi, to pick up his new stairs, full of hope and gratitude.

Ch.192 I Have a Pretty Good Life

March 2023

          I awakened yesterday, said good morning to Pat as usual, and began contemplating the day. Morning: drinking tea and reading my latest novel in bed; sharing breakfast with Levi; showering; checking emails. Afternoon: Walking Levi; visiting Lakota at his senior horse paddock if the weather allows; texting or phoning one or two friends; lunch with my son Joshua. Evening: Finishing a pork loin I cooked two days ago; baking brownies; reading the newspaper and trying to solve the word puzzles; watching the Milwaukee Bucks basketball team (currently winners of 19 of their last 21 games). Maybe drawing, either another colored pencil lesson or on my own. Maybe writing in my blog if the spirit so moves me (obviously it did because that’s what I’m doing now). Maybe exercising on my new stationary bicycle. No face-to-face visit with a friend today, but only because Richard isn’t feeling well. Certainly, there will be several “stop what I’m doing and sigh moments” as I experience brief waves of sadness from missing Pat.

          It’s been over 8 months since Pat died July 1, 2022. In retrospect I think much of this time has been spent in missing Pat and missing the life we had together. Eight months have passed in which my reality has been infiltrated by magical thinking: somehow, I can get Pat back or at least replace her with another “almost” Pat. That way I could keep living just like I had lived before she passed.

          Thankfully, magical thinking hasn’t completely kept me from facing reality. I’ve become far more active socially than ever before, taking the initiative to fill my time with friends, family, pets, drawing, volunteering, and activities. Additionally, I’m finding myself less anxious about spending time alone. A few days ago, I realized I had nothing at all on my schedule. I remembered to say to myself that I had time in my hands, not on my hands, and relaxed.

          I have a pretty good life. I know I can’t get Pat back. Nor can I replace her with a clone. My life must go forward with only her memory. I am transitioning toward a new life, a good enough life, for which I am grateful.

 

 

Ch.193 Letting Go of a Great Resentment

          March 2023

 

          Before Pat closed out her life at Azura Memory Care she spent a few months at a place we named “Peaceful Life” Assisted Living Center. Located fairly near our rural Wisconsin home, Pat was placed there after her stay at a rehabilitation center only because they were one of the few sites that had an opening and claimed they could deal with Pat’s relatively great physical needs. Pat was recovering from a urinary tract infection (UTI) and was very weak. Furthermore, her diagnosis of Lewy Body Dementia probably scared off some potential placements because LBD has a reputation for creating difficult patients.

          Unfortunately, Peaceful Life was a new establishment; the owners had never run an assisted living center, the staff were mostly untrained and undermanned, and nobody there had any experience with Lewy Body Dementia. Things went badly quickly. Poorly trained, the staff failed to recognize that Pat’s diarrhea was actually caused by constipation. Her uncontrolled diarrhea created skin problems and that in turn meant Pat was in constant pain, especially when the caregivers tried to change her underwear. Pat became combative; the staff avoided changing her as long as possible, and everything got worse, until, predictably, Pat suffered her third UTI and had to be re-hospitalized. She returned to Peaceful Life for a while, only until we could find another place for her.

          I thought Peaceful Life had done a decent job with Pat until I saw how much better she was treated at Azura. Instead of one caregiver wrestling with Pat while trying to change her (and eventually giving up, saying “I did the best I could”), three persons now came into the room at a time, one to hold Pat’s hands and ease her fears and two to quickly and expertly clean and change her. Pat’s badly wounded buttocks were healed within two or three weeks from the time Pat arrived at Azura.

          Pat’s care at Peaceful Life was so inadequate that one of my children lodged a complaint with the state Department of Health. The facility did receive citations and was ordered to improve their services in the future.

          I’ve carried a great resentment against Peaceful Life since those days. I’ve blamed them for helping create the conditions that led to Pat becoming so physically weak that she could no longer support her own weight. When asked about Peaceful Life, I regularly badmouthed them and recommended that people take their loved ones anywhere else than there.

          However, nothing stays the same and sometimes things change for the better. A couple months ago I had breakfast with a fellow Lion club member, “Dwayne,” whose wife was at Peaceful Life. Dwayne told me he went every day to see her, and he was happy with the service she was receiving. “Well, maybe,” I thought to myself, but maybe Dwayne just doesn’t know the real situation. And then, my neighbor Bobbi Jo recently placed her father at Peaceful Life. She and her husband Mark, a particularly knowledgeable social worker, both told me that Bobbi Jo’s dad had adjusted quickly and that they were very satisfied with his care.

          I could certainly argue that I have every right to remain resentful even if the place has changed so convincingly. After all, nothing they do now can alter the inadequate care Pat received and the damage it did. But what good would that do? I’d rather feel good about how they have improved their program, providing a safe place for local residents as well as jobs greatly needed in our rural community.

          Holding on to a resentment mostly hurts the person holding on. I don’t want or need to do that.

          So here’s the big question: If someone told me today that she was considering placing her husband at Peaceful Life and asked my opinion, what would I say? I would, of course, be tempted to tell them about Pat’s terrible treatment. I’m human. However, I think what I’d do is to mention briefly that Pat’s experience didn’t go well there but that I had heard from several individuals that their loved ones are being well-treated at Peaceful Life. I’d suggest they should go there to take a good look for themselves.

          People in Alcoholics Anonymous have a saying “Don’t let someone have free rent in your brain.” I guess that applies to institutions as well.

 

Ch.194 My Friend Howard’s Joyful End of Life

April 2023

          Howard was dying from a rare form of cancer. He knew it. I knew it. So, I increased my visits to his home from once a week to twice weekly. We continued watching educational DVDs, the last one on “The History of Capitalism” at his request. We shared conversations with Howard’s wife Kay. We kept life as close to normal as we could, even when that meant Howard literally crawling from his chair to the television to change the DVD when I could have more easily done that task. Meanwhile, probably fifty of Howard’s many friends and relations came to visit, so many that Kay had to organize their visits on a flow chart. For weeks I avoided asking the question I figured everybody else was asking. But finally, I succumbed. “Howard, how are you doing?” I asked. “How do you feel?”

          “I feel joyful.”

          “What?”

          “I feel joyful,” said Howard, with a smile. Joyful? I hadn’t expected that answer, but I could tell Howard meant exactly that. His smile was sincere (Technically, a Duchenne smile, named after the researcher of that name—the kind of full-faced, twinkly-eyed smile even professional actors can’t fake.) He went on to explain that he was joyful to still be alive, to have his many friends dropping by to say their last hellos and goodbyes, to hear the birds outside, to feel his family’s love and caring. A gregarious person, Howard in his hospital bed was in his natural element, hosting the people that had made his life meaningful: childhood friends he’d kept for six or seven decades; “mushers” who shared his love for Huskies and sled dog travel (Howard’s retirement “hobby” was raising and training about 30 dogs that gave rides all winter to paying guests); neighbors; caregivers from the time he administered the nursing program at the local hospital; Kay and all three of their children and their families; and me, his “intellectual” buddy, his word for what he and I shared, a love of learning.

          Howard’s joyful end of life has made me rethink my future demise. I’m more introverted than Howard and I’ve always imagined dying quietly, privately, like a rock thrown into a lake, sinking with barely a splash. Maybe instead I could become a flat rock happily skipping along the surface for a while as my friends and family smile and laugh at my joyful parting.

 

 

Ch.195 Reminiscences: “Tripping” with Pat

April 2023

          Searching for some Lewy Body books, I happened across three journals I kept between 1997 and 2015 in which I documented the dozens of trips Pat and I took together, mostly working trips that left time for adventuring. Typically, we’d do three-city tours: fly to city “A” on a Wednesday; I’d present workshops on anger management on Thursday and Friday while Pat took care of registrations and book sales (sometimes Pat co-presented but she didn’t much like doing that); driving and exploring on Saturday and Sunday as we headed to city “B”; presenting on Monday and Tuesday; driving to city “C” on Wednesday; presenting on Thursday and Friday; exploring on Saturday and flying home Sunday. But I also journaled about larger occasions including the times we travelled to make co-presentations in Panama, Italy and Hong Kong and on a five-city tour of Australia.

          One thing stood out as I read: we had a lot of fun working and travelling together. We spent many hours rockhounding, sometimes in deserts and sometimes at roadside rock-cuts. (We found chocolate agate at a Texas road cut; black volcanic “Apache tears” in an Arizona desert; turquoise and variscite around Tonopah, Nevada; fossil fish by Kemmerer, WY).We visited countless museums; we went to movies and watched television; we met friends on several continents; we seriously discussed our presentations in an effort to improve them; we learned a lot both about the world and each other. And sometimes we argued, like most couples do, going to bed still angry only to wake up feeling ridiculous.

          Pat kept coming alive as I read. There she was calling me over to carry a beautiful (and heavy) rock she’d found. Pat gently smiling as she magnetically attracted people wanting to tell her the stories of their lives. Pat and I excitedly walking through a Dale Chihuly glass exhibition at a Texas park. Pat insisting we should ship another 100 pounds of rocks home from Arizona. Pat smiling as I took her picture reading a newspaper in bed. Pat just being Pat. We took some of these trips even after Pat was diagnosed with Lewy Body, until she was physically unable to travel. My memories of those later trips are quiet ones; we spent a lot of time together, doing little, just one short outing a day, and those were some of the trips I remember most fondly.

The more I read the more real she became. Three-dimensional. Vibrant. Pat became so vivid in my memory that I almost felt her physical presence.

          Like many other times I’ve contacted Pat in this way, I had a bittersweet experience. I kept reading those journals for over an hour, feeling Pat’s presence while at the same time intensely missing her. Pat was present and absent both, alive and deceased, here and gone. Sometimes I found myself smiling through my sadness, sometimes crying through my laughter.

          I’d sure like to take another trip with Pat. Just one more.       

Ch.196 Watching Pat’s Memory Choir Brings Sadness and Joy

          April 2023

          This morning I attended the final rehearsal for the evening’s Springtime Performance by the Stand in the Light Memory Choir. This is the same choir that Pat sang in after she was diagnosed with Lewy Body Dementia (read Ch.40 of this blog). Back then, during late 2019, a million years ago, I would sit in the second row at rehearsals, just watching Pat smile; I was so happy for her and grateful she could still sing with her beautiful soprano voice. I was proud of her and for her. I basked in the light of her joy. (All that pleasure came after we got there – you try waking up someone with Lewy Body Dementia at 8 a.m. to get them to rehearsal by 9:30.) I was a cheerleader, rooting for my wife and for the entire team.

          April 2020 was when Pat’s choir gave its spring performance. My family was there, scattered through the auditorium, with Joshua beside me. The choir walked in; they tuned up with a simple piece; and then they sang, beautifully, and Pat sang, just loud enough that I convinced myself I could single out her voice occasionally. Our eyes met and we smiled. I fell in love again. And then we all meandered downstairs for snacks and congratulations.

          So, yesterday, I was here, April 2023, sitting alone, seeing some familiar faces: the two women who “coached” Pat during rehearsals; Iva, the small lady who writes and reads a new poem every year; Cathy Reitz, still conducting with joy and optimism; a couple men I sang with after I joined the choir in 2020 (just before Covid so I never got to participate in a concert); and two memory care residents from Azura, Pat’s final home. Many new people, too, reminding me that Pat wasn’t the only one with memory loss who had passed away in these last few years.

          I began tearing up as soon as the choir began singing the same tune that Pat sang at the beginning of every rehearsal. And again, when they practiced “Sing,” a piece that Pat’s choir had practiced, and a last time when they sang their signature song, “Stand in the Light.” [“…stand in the light and be seen as we are.”]

          If I had known in advance how powerfully I would be affected, I’d have asked one of my children to come with me. Still, it was good, watching the current members of the choir sing, guessing that they were feeling happy and proud just as Pat felt four years ago.    

 

Ch.197 “Get Me Through December.”

April 2023

          Alison Krause is a blue grass singer with a beautiful soprano voice. This afternoon I listened to several of her songs, ending with a heart-rending ballad entitled “Get Me Through December.” The key phrase of the melody is “Get me through December…so I can start again.” To me, “December” here is metaphorical, referring to somehow surviving any particularly difficult time to find hope or meaning or joy again, or at least a chance for any of the above.

          I guess I’m going through December now in this first year of grieving. My head faces two ways, one part of me looking back to my life as a married man and the other trying to peer through the fog to get a glimpse of my future life. My new life, not necessarily a better life or a worse one, but certainly a different way of living and being. One question I have been pondering is how much Pat will remain in that new life? Will I continue thinking of her several times a day, or telling Pat good-morning and summarizing my day for her before bed, or randomly and spontaneously bubbling into tears of sadness? Will I ever feel more full than empty?

          I mentioned a few essays ago that I am leading a pretty good life. That is still true. Friends, family, animals, support groups, colored pencil drawing, organizing my minerals (into 110 containers), having reasonable health – all this is part of getting through December.

 It’s the “so I can start again” that confuses me.

 

 

Ch.198 Don’t Leave a Mess Behind

May 2023

          I have been cleaning, sorting, keeping, and throwing things since Pat was transferred to assisted living. I began with hundreds of bags of Pat’s clutter, scores of mystery books, thousands of common rocks – you name it, Pat had it, and usually several versions of whatever it was. This process took over a year.

          Now I’ve been sorting through our collection of minerals, organizing them, putting them into containers (110 and counting), charting them by name and by bin, and, with my daughter Jennifer’s help, creating labels for the bins (Sample: Bin 102: orange calcite, dogtooth calcite, manganite). Yesterday I stopped to ask myself one question: Why am I doing this so compulsively?

          My first answer is that Pat and her brother Kevin were “professional” gatherers, to the level of hoarding for Kevin and close to that with Pat. When Kevin died, we sold his home “as is.” It would have taken months to make it habitable; the property was valuable, overlooking the St. Croix River, and it sold quickly anyhow. As for our home, I could finally create order out of chaos. I like order. Symmetry. Space. Now I can have that environment, although I am keeping many special reminders of Pat – photos, jewelry, her brightly colored walking cane, etc.

          But as I thought more, I realized I have a second motivator for my action. I have taken an internal vow that I will not leave a mess for my kids to clean up when I die. I say the same thing to myself every time I take another load to the dump or to Goodwill: “This is one load of stuff Cindy, Jenny, and Joshua won’t have to handle.” I suppose this is part of my generation’s American dream of living independently until the end of life and never becoming a burden to your children. At least that was the hope/goal when I was growing up. It’s still my goal, although my son Joshua has invited me to live with him and Patty whenever I am ready to do so.

          It’s a little different with our minerals. I hope to give many of them to my children. Now they will be able to know the names of the minerals and a little about each of them.

          I am anticipating my death with each book I give away and with every mineral I sort and label. Leave no mess behind or, at least, leave as few messes as I can.

 

NOTE: Ironically, two days after I wrote this note I was informed by a doctor at the Mayo Clinic that I needed to take several tests because one test I had just taken for a general checkup indicated I might have cancer.

 

Ch.199 First Airplane Trip After Pat’s Death

May 22, 2023

          I’m flying tomorrow from Minneapolis to Toronto to spend a week with my brothers Art and Don, their spouses Ruth and Randa, and Don’s daughter Sarah (with husband Sebastian and their son Cedric).

          I’ve taken at least one hundred plane rides during my career as a workshop presenter, but none since Covid began. I decided to retire about then, mostly to take care of Pat as her dementia increased. Of course, many people suggested I should take time off from caregiving, that it would do me good to get away occasionally. I’m sure they were right, but, if you are a caregiver reading this essay, you know how hard it is to take that advice. “I don’t want to leave Pat” morphed into “I can’t leave Pat, what if something happens?” Now, almost one year after Pat’s death, I’ve finally committed to travel again. But…

          I feel GUILTY about leaving my collie Levi and my cat Blackie. Especially Levi. He’s almost 13 years old. Since Pat had to be institutionalized, he’s followed me everywhere, constantly retrieving me whenever I’ve strayed from the pack. And now as his “reward” I’m leaving him alone for a week, albeit with excellent care provided by my neighbor Mark. What if something happens to Levi? What if he’s dying and I’m not there to comfort him? Levi is my best friend, my constant companion. How could I leave him?

          Yesterday I mentioned my discomfort to my human friend Rich Pfeiffer. Rich owns an older dog too, and his response was to say he also has become reluctant to leave his buddy. I was grateful for his response; I had been anticipating an “Oh, Levi will be fine, don’t worry” dismissal and instead I felt affirmed in my distress. Rich understood. Rich cared both about me and Levi.

          It’s occurred to me that I have transferred some of my caregiving instincts from Pat to Levi now that Pat no longer needs me. True. But at a deeper level I’d say that caregiving is part of my core personality. I love taking care of people and animals. My life feels more meaningful when I can care for others. And so, I need Levi in my life; I need him in my pack just as much as he needs me. I cannot imagine how lonely I would feel without him.

 

 

         

         

Ch.200 An Unpleasant Surprise: I May Have Cancer

May 3, 2023

          I’ve been concerned about having increased memory and other cognitive problems, so I scheduled an appointment with a neurologist at Mayo Clinic here in Eau Claire. Dr. Nye scheduled some tests, telling me after the tests they’d schedule the next appointment. I didn’t expect the next call to come from Mayo’s cancer center, though.  Still, minimizing the risk, I told myself the tests might indicate some potential issues that will need to be monitored. No big deal.

          Wrong. Big deal. I’ve just seen the results of the first tests that have been posted. I am low on two types of immunoglobulins (A, G) and high on another (M). Immunoglobulins are created by white blood cells in bone marrow.  They are antibodies that help the body fight off infections. I don’t know yet if they are definitive for cancer, but they make me more vulnerable to frequent and severe infections.

          I’m writing right now as a way of handling my fear. Not anxiety. Fear. I am scared of cancer – my mother died from liver cancer at 47 years of age. I know I should wait for further test results; I have an appointment set for a week from yesterday where I’ll get more information and perhaps a diagnosis and treatment plan (Maybe “I’m so sorry, Mr. Potter-Efron, we mixed up your labs with someone else’s. Your tests all came back normal.”)

          Here’s where being a widower and living alone is tough. I really could use hugs right now and the only volunteers are my dog Levi (willingly) and my cat Blackie (on his terms, of course). I am blessed with wonderful friends and family, but they can’t be here every minute to ease my fears. Fortunately, I will see my son Joshua and my friend John in a couple of hours, and another friend, Richard, later today. I’ve already asked Jenny to come to my doctor’s appointment next week. I’ve talked for an hour with my twin brother Don. I just wish each of them were here.

     I’m angry with Pat right now. “Damn it,” I want to tell her, “Why aren’t you here when I need you?” I want a real, physical hug, a long tender hug. Knowing Pat would be with me if she could be doesn’t help.

     Nothing like resenting the dead for being dead.

 

ADDED NOTE: After many tests including a bone marrow biopsy (much less painful than rumored, thank goodness), my current diagnosis is “monoclonal gammapathy of uncertain significance” which translates to “Yes, you have cancer cells in your blood but not very many.” No treatment right now, just monitoring, and it may never develop into anything serious. Quite a relief.

Also, I want to thank my family and friends and many readers of this blog who reached out to comfort me and to share my fears during the last few weeks. It’s wonderful to know you care.

 

Ch.201 Everything Goes Wrong: Cancer Danger, Flat Tire, Disabled Lawn Mower, Downspout Problems, and a Horse with Loose Teeth.

          May 2023

          In the past three days I’ve lost any illusion of having control over my world.  Here’s what happened:

  • I plowed my riding lawn mower into a hidden rock, disabling it and causing it to stop so suddenly the seat of the rider upon which I was sitting collapsed.
  • A perfectly new tire went from 35 pounds of pressure to 0 pounds in ten seconds when punctured. Fortunately, I was able to crawl the car home and call for help.
  • Hoping for a definitive diagnosis, my cancer doctor instead scheduled a bone marrow biopsy (reputedly painful). The good news is that whatever the result, it doesn’t look like I’m in any immediate peril. [Added note: I have a “little” cancer” which only needs monitoring].
  • Yesterday I took apart two sections of my brand-new gutter downspout so I could mow past them. Today I discovered I couldn’t put them together again.
  • Samantha, the stable owner where my old horse resides, informed me that Lakota is quickly losing his teeth and needs to be fed mash to keep him from starving.

 

So, when’s the tornado going to smash into my house?

Obviously, those five troubles listed above are not equal in significance. My cancer uncertainty comes first, Lakota second, the rest far behind. However, all five happening within a couple days has had a cumulative effect. I’m like a storm-phobic dog whose ears are still twitching and turning even after the sun has come out.

I mentioned last week that I was mad at Pat for not being able to hug me. Now I am missing her kindness and her optimism. Pat would hold me and comfort me. She’d tell me not to panic, that things would soon improve, and I’d believe her. But if I did panic, she’d accept that, too. Just Ron being Ron. That’s what I need to accept. I don’t have to be strong right now, trying to regain my illusion of control.

Life might get better, soon.

 It’s time for a cup of cocoa.

 

 

Ch.202 Mother’s Day Memories

May 2023

          I didn’t expect to awaken tearfully on Mother’s Day. After all, Pat and I hadn’t made big deals out of Mother’s or Father’s Day since the children moved away. But this was my first Mother’s Day without her. First came tears and then my usual mantra: “Honey, I miss you so much.” And then came a series of Pat as Mom memories, both good and bad: Pat making dramatic Halloween witch costumes; Pat and I hustling the kids out of the house after she fell asleep smoking and set the couch on fire; Pat making pizza from scratch; Pat reading my son Joshua’s poetry book he made for her; Pat buying used clothes with spots on them and not understanding why the kids didn’t want to wear them. Memories jumping out from their secret hiding places in my brain, each one complete with an attendant emotion, be it joy, fear, or anger, but now with an added layer of sadness, as if someone had sprayed a thin layer of grey paint over each scene.

          Pat’s mothering actions were just as complex as everything else about her. As always, she was unpredictable. At her worst, during her alcoholic years, she was sometimes missing in action but never physically abusive, and she was always full of love for her children. At her best, Pat seemed to understand what made each child special: Cindy’s outgoingness, Jenny’s quiet tenaciousness, Joshua’s artistic soul. I think she was better at encouraging each child to be herself or himself than I was.

          I am thankful for all these Pat as Mother memories, even as I cry through them. They help me remember just how important the two decades we parented were in defining our marriage. I’d forgotten that reality over the almost forty years since our children created their own lives in their own spaces.       

 

Ch.203 Feeling “Normal” Feels Great

          May 2023

          I have just returned from my first airplane travel trip in over four years. I spent eight days in London Ontario, Buffalo NY, and Toronto with my twin brother Don. I also saw Randa, Don’s wife; my brother Art and wife Ruth; Randa’s children and grandchildren; and Don’s daughter Sarah and her husband Sebastian and son Cedric.

          The trip went well. I did have a couple sudden crying episodes, once when Matt, Randa’s son in law, asked what I’ve been doing lately. “Grieving,” was what I immediately thought, and unbidden tears followed. But I stayed in the moment most of the time, and near the end of the trip I told Don that I was feeling “normal.” I think “normal” meant “not lonely” but also “whole.”

          A big part of feeling normal was spending time with Don. We are identical twins and over the years “identical” has referred to far more than looking alike. We have always walked at the same pace, worked at the same type of job (social work), cared equally and deeply for the people we love, held similar political views, and found purpose in life in our relationships with others. Spending this time together helped me feel connected and bonded again, helped me feel whole in a way I haven’t since Pat died. I felt safe.

          I thought this warm feeling might disappear as soon as I got back home to my widower lifestyle. But so far it has not vanished. Partly that’s because my daughter Jenny picked me up at the shuttle, reminding me that I am loved by her and my other children; and, because I was greeted when I got home by my wonderful collie Levi and by Blackie the cat; and because I had lunch the next day with friends happy to see me again; and because I spent an hour at Azura, Pat’s memory care center, putting together the outer frame of a puzzle with Kathy, one of the long-term residents there; and because I facilitated a memory loss group yesterday afternoon, helping other caregivers and people with memory loss deal with their issues.

          Yes, there is a great void in my life that will never be filled. But, paradoxically, perhaps I can still feel whole instead of empty by taking in the opportunities I have to do meaningful things and by feeling the caring and love I give and receive. If that is what “normal” means, I will gladly accept feeling that way.

 

 

Ch.204 One Year Anniversary of Pat’s Death

July 1, 2023

          I thought I’d wait to get home from the cemetery today before writing, but this morning I find myself sitting at my computer in tears, needing to “compose” myself.

Yesterday I watched the recording of Pat’s funeral/celebration of life for the first time. I saw and heard much more than I did at the actual event, where mostly I was just trying to hold myself together. AnneMarie seemed confident, insightful, and connected with Pat at a spiritual level as she led the service. Cindy spoke powerfully, a natural storyteller relating scenes from Pat’s life. Joshua lovingly evoked Pat’s gentleness with prose and poetry. Jenny kindly spoke for me, voicing the thoughts I was unable to share at that moment. My friend John’s brief comment near the end of the service reminded me how Pat cared deeply for all the people in her life. After the service I watched the photo show, complete with the music I had selected (Three pieces from our time: “You’ve Got a Friend,” “Longer,” and “Bridge Over Troubled Waters”). Unexpectedly, I cried more watching those photos of Pat and listening to the songs than when I watched the service. Maybe it happened because each photo represented a specific scene from Pat’s life and, together, they spoke of her entire being here on earth.

This morning I sit and write, Levi laying on the floor beside me. I’ll take him for a walk, soon, before I leave for the cemetery. I know he remembers Pat, but I don’t think he’s perpetually waiting for his human to come home like the dog in the movie. Levi focuses upon the living, meaning he is my constant companion. But when I mention Pat to Levi, he listens, and sometimes I see his eyes soften.          

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          I’m back home after going to the cemetery with Joshua and AnneMarie and meeting Cindy, Mark and Chris there. Oddly, I felt more connected with my friend and family today than with Pat; I guess I’ll have to go to the cemetery myself, alone, to fully connect. But I was able to comfort and be comforted, and that was healing.

          Then, around 6 p.m. Cindy called. At the cemetery I had given her an onyx bowl filled with polished rocks (Jenny and Joshua had previously received similar gifts). Cindy was looking through the stones, piece by piece, even as we talked. Each rock was different, beautiful, unique. Pat had collected them all at dozens of rock shops. And right then I felt that Pat was present, joining in the conversation, admiring each stone, pointing out their secrets so Cindy and I could witness their mysteries. Pat the magician, loved and irreplaceable.

 

 

Ch.205 Three Grieving Men

June 2023

          I, like many men, have usually preferred talking with women, especially if the topic involved sharing emotions as against opinions. However, there have been several exceptions to this generalization, men with whom I could “emote” comfortably. My twin brother Don, of course, always, my brothers Art and Brad occasionally and more so since Pat died, my recently deceased friend Howard, my long-time friend and business partner Ed, my anger management colleague Rich (with whom I share “friendlies” since we both like soccer).

          Lately, though, I have developed a particularly meaningful relationship with two men, Richard and Jerry. All three of us have had or still have trusted our dementia-afflicted wives to the caregivers at Azura Memory Care Center. Richard’s wife Judy still resides there; Jerry’s wife Betty died at Azura just last week; as you know, my wife Pat passed away last July, almost a year ago, after living at Azura about a year.

          At 79, I’m the youngest of our group; Richard is 80, Jerry 92. Richard and Jerry are retired psychologists; I am a retired social work counselor. Richard had consulted at our mental health clinic several years ago; Pat and I ran into him at a department store just after Pat had been diagnosed with Lewy Body Dementia. Pat told Richard of her diagnosis. “My wife Judy has Alzheimer’s,” he responded, and called her over to say hello. We began getting together as a foursome, and then a threesome, and now a twosome, as Pat and then Judy finally needed more care than we could provide at home.

          In the meantime, Richard introduced me to Jerry and Betty just as Betty was weakening to the point she needed institutional care. Jerry placed her in Azura and the three us of began meeting for a weekly lunch. Our discussions are wide-ranging, covering politics, sports, apple orchards (Jerry still prunes his hundreds of trees) and, most importantly, grief. Until last week I was the only one of us whose spouse had died, while Richard and Jerry still suffered through watching their partners steady declines. We have been each other’s witnesses, sharing our individual pains while embracing the universality of loss.

          Yesterday, four days after Betty died, the three of us met for breakfast. Not knowing if Jerry needed to focus upon his grief or have some relief from it, Richard and I let Jerry set the tone; he told us that he would take Betty’s ashes back to her Kansas homeland, that one of his children was with him and other family members would soon arrive; he teared up a couple times. Once again, we discussed politics, sports, apple orchards and, just enough, grief and loss.

          Let me return to the concept of being witnesses for each other’s grief. At one level each person’s grief is individual and can never be fully shared. But grief has a universal aspect to it as well, the gut pain that accompanies the breaking of a loving bond created and reinforced over decades of marriage. Jerry, Richard, and I have been married for over 150 years collectively, but now we live alone. That shared loneliness has created a deep bond, one for which the word “friendship” is too weak.

 

Ch.206 Levi Hasn’t Eaten in Three Days

June 2023

          Four mornings ago, my 13-year-old collie Levi began coughing lightly and panting frequently. He began walking more slowly than usual and having some trouble jumping into the car.

          Three mornings ago, Levi declined to eat his morning meatball (with a pain pill “hidden” inside). But he remained reasonably active and came with me when we visited my quarter-horse Lakota at his stable.

Two mornings ago, Levi collapsed. His eyes seemed dim; he laid on the floor without movement; he barely responded to my petting him; he only drank water when I brought the bowl to him. I was grateful, however, that he did drink at all. It was my only sign he wasn’t dying.

          Yesterday I brought Levi into his veterinarian for an emergency visit. Dr. Jeffries informed me that Levi tested positive for three separate types of tic-borne disease.  I wasn’t completely surprised, even though I have been giving him an anti-Lyme’s disease pill every month, given that we live in a state highly contaminated with tic-bearing insects. Dr. Jeffries shoveled an antibiotic pill down Levi’s throat and told me to do the same thing for the next thirty days. She predicted Levi would begin feeling better in a few days.

          This morning Levi still declined to eat. I did manage to get him to swallow his antibiotic on my third try (He spat out the pill on my initial effort and sailed it like a discus across the room the second). I’m trying to convince myself Levi’s looking better because he’s lifting his head more and walking a little. I keep reminding myself that Dr.Jeffries said he'd need a few days before he started recovering.

And I’m telling Levi something I never said to Pat: “I NEED you to stay alive.” I didn’t say that to Pat because it wouldn’t have been fair. She was going to die no matter how much I needed her. The last thing I wanted to do was to make her feel guilty about leaving me. But Levi is different. He doesn’t understand my words. He may understand my tears, though, but I trust he takes those into his being without any sense of obligation.

Levi has been my constant companion since Pat died. Before that he was Pat’s companion, sharing her bed at home and later visiting Pat with me every night at Azura. But after she passed away, we’ve become much closer, taking walks together, sharing meals, visiting Lakota, and supervising the cat (I can ask Levi to go find Blackie and he usually comes home with him in just a few minutes.) Levi hasn’t made me feel whole, because that isn’t possible, but he has insulated me from my loneliness, warming me against its cold. If Levi dies soon, I will face a new, deeper emptiness than I have yet to endure. That’s why I need him – I am afraid to face that vacuum of despair.

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          July follow up: Levi is doing much better now that his antibiotics have kicked in. He’s taking his medications easily, too, since I discovered that adding a little barbecue sauce on his meatball seems to hide the medicine smell.

 

Ch.207 Hanging On or Getting Through My Loss?

June 2023

          “I choosy with the pain I feel,” Sarah said. “Some people pain is eternal. Some people worship they pain. Don’t know who they are without it. Hold on to it like they gon’ die if they let it go. I reckon some people want their pain to end, true. But most? It’s the thing that makes their heart work. And they want you to feel it beat.”

          This passage is from The Prophets, by Robert Jones, Jr. The speaker is a slave woman named Sarah, as she participates in a women’s healing circle ritual for two men who have been whipped and beaten almost to death by the plantation owner’s men.

          This passage has left me with a question. Which am I, someone hanging on to my pain and relishing the attention I receive when I “share” it with others, or do I truly want my pain to end? Specifically, am I working through my grief – emerging ready to fully live my new single lifestyle – or am I hanging on to it from self-pity and the desire to get sympathy?

My response to this question is “both.” I certainly have shared a lot of my anguish with others, including on this blog, and occasionally I have probably over-dramatized my sadness to gather physical, verbal, and online support. Plus, I go every two weeks to a grief group that in some ways allows me to focus upon my misery rather than upon my journey (Hanging on to pain is certainly not the intent of the group; it is the responsibility of each member to use the group to grow).

          On the other hand, I do see myself gradually emerging from the fog of grief. It’s been almost a year since Pat died, a year I’ve filled with people and home improvement to combat my loneliness. I took my first trip away from home just last month, to visit two of my brothers. The journey went well and left me feeling more full than empty. My anxiety level is down, and even a cancer scare hasn’t brought on depressive thinking.

          One thing I’m sure of: staying perpetually sad is not the best way to honor Pat. She’d want me to live with my memories of her, not die with them. That’s why I keep several pictures of her smiling; when I look at those pictures I start to smile too.

 

Ch.208 Our 58th Anniversary

July 3, 2023

          Pat and I were married on July 3, 1965. That means every July I will commemorate almost simultaneously both Pat’s death (July1, 2022) and our anniversary (July 3).

          This July 3, I decided to visit Pat at her gravesite. I took my collie Levi, and a folding chair, rather than going with other people. Once there, I took turns walking Levi around the cemetery, an old-fashioned one with many beautiful trees for Levi to sniff around, and sitting on my chair so I could talk with Pat. The walking breaks helped buffer my time with Pat; I felt connected without being overwhelmed.

          Something bothered me, though. I kept thinking that this would have been our 58th anniversary today. But here I was talking with Pat. Indeed, I had traveled the 1 ½ hours driving here specifically for that purpose. I certainly felt that Pat was with me right then, very much in the present. It took me a while to realize that this is our 58th anniversary. True, Pat died, but our marriage didn’t die with her. I needed to reprogram my thoughts: It wasn’t that July 3, 2023, would have been our 58th anniversary. July 3, 2023, is our 58th anniversary.

          That small change in my thoughts has had an immediate impact on my life. I had been thinking of removing my fire agate ring from my ring finger now that a year had passed since Pat’s death. Maybe, I reasoned, it was time to move on. But Pat and I bought matching fire agate rings many years ago to celebrate our 30 or 35th anniversary. Keeping mine on right now feels like a good way to honor our marriage.

          I had always hoped Pat and I would make it to our 70th anniversary. Maybe we still can.

 

Ch.209 I Give Away 150 Bales of Hay

July 2023

          Two weeks ago, I placed an ad in a local paper called the Ad Delight. “Free outdated hay. Approximately 150 bales. Eleva, WI….” I didn’t need that hay anymore since my horse Lakota is now stabled at a farm ten miles away.

The first person to respond was a man named Menno. I suggested he call me before he came over, but he told me he didn’t have a phone. I suggested that Menno drive to my house to look at the hay, but he didn’t have a car. That’s when I asked if by any chance Menno was Amish; he was indeed. I offered to drive to his place near Augusta (only 30 minutes away) so I could bring him to my home. After a short pause Menno agreed. Next morning, we met, and on the drive, Menno told me he had ten children; the first six were girls, the next four boys. He would use the hay to mulch around his crops. He told me he would hire a non-Amish man to bring over a truck to load the hay.

          Last night I came home from my grief group to watch as Menno and his four sons (and the hired man) efficiently loaded all 150 bales onto a flat bed trailer. Menno is tall, thin, and handsome. His four sons are tall, thin, and handsome. And, of course, they were all dressed exactly alike in blue shirts and pants. Finally, Menno sighed, shook my hand, thanked me, and off they went.

I will probably never see Menno and his sons again. But I enjoyed our brief connection. My life is nearing conclusion while his is mid-life vibrant, and his children are learning from Dad how to grow and, presumably, prosper. Gathering my hay and using it for mulch fits Menno’s mid-age task of providing for his family. Menno is investing; I am divesting. Letting go of stuff I don’t need any more fits my time of life. It’s all part of an ageless schema, one in which I feel destined (and willing) to play my part.

Ch. 210 Walking My Cat

July 2023

          I was taking a walk on the road by my home the day after Pat died, my collie Levi twenty feet ahead and my cat Blackie twenty feet behind. My neighbor Andy drove by, stopped, and joked about me being the only person in the neighborhood who walked cats. I told him Pat had just passed away, watching as his casual smile disappeared, replaced by a look combining startle, sadness, and embarrassment. Since Andy is well-known and active in our 1,000-person farm/small town community, I asked him to let others in the area know what happened and he agreed. I told him I appreciated that because right then I wasn’t up to talking with anyone.

          Now, just over one year since Pat’s death, I’m still walking Levi and Blackie on that same road. Levi, getting old, is only a few feet ahead or behind me, panting in his determination to keep up. Blackie, still young, walks more steadily but turns frequently to ensure that nothing is sneaking up on him. Blackie is terrified of moving vehicles; walking with us he is no longer the stalker but the stalked. It amazes me that he keeps following Levi and me despite his fear. But sometimes it's too much and he meows weakly; Then I walk back, pick him up, and take him home.

By the way, Blackie only walks in one direction, toward our neighbors’ homes. That’s his familiar territory. Kent and Linda, whose house sits past my first neighbor’s home, a farm field, and a feed mill, told me they often see Blackie hunting rodents in their front yard. “I guess he follows Levi,” I said. “No,” Kent replied, “He comes by himself.”

          I used to worry every day about Pat. How was she feeling? Was she getting worse? How much longer would she live? Now I have shifted my anxiety onto Blackie and Levi. Levi is my daytime worry. Will he recover from Lyme’s disease? Is his hip dysplasia getting worse? Is he becoming incontinent? How will I survive without him?

          Blackie is my nighttime worry. Where is he? Has something happened to him? What if those howling coyotes catch him? He’s the creature for whom I wake up at midnight to switch on the outside light and open the door, hopefully to watch him slowly and almost defiantly amble in. Or not, in which case I’ll try again at two a.m.

          I wonder how often Blackie and Levi worry about me. It’s easy to imagine Levi’s concerns. “When is he coming home?” “What if it storms and he’s still out there?” We are a two-person pack and pack animals look out (and worry about) each other. But I don’t want to underestimate Blackie. I think cats are far more affectionate and bonded with their humans than they are given credit. Perhaps the difference is that when my car pulls in the driveway Levi thinks the equivalent of “Thank God, you’re home” as Blackie thinks “Well, it’s about time.” It’s each their way of saying I matter to them.

          I suppose I’d be less anxious if I didn’t have Blackie and Levi. But I’d feel less love as well. And, now, without Pat, I accept my anxiety as the price to pay for being part of a loving family.

 

Ch.211 Critical Decisions: Pat and Levi

Aug. 2023 

          For almost a decade my collie Levi has carried a fluid-filled sac that hangs from his mid-section. Every time a veterinarian examined it the advice was always the same: just leave it alone. Sensible advice, even though the sac kept enlarging, until four days ago, when clear liquid began seeping through the thinly stretched skin on the underside of the sac. This time the veterinarian told me that if we didn’t act the sac would soon split, creating a huge mess but more critically opening Levi to repeated infections.

          My choice was to wait for the split and hope the veterinarians could stich Levi up to ease the threat of infection, or to approve surgery to remove the sac, at the risk that my 13-year-old dog wouldn’t survive the necessary anesthesia.

          I remember facing decisions like that near the end of Pat’s life. Two difficult choices in particular: Strong pain relievers or not, trying to balance lessening suffering against risking permanently increased cognitive impairment; Accepting hospice or fighting to keep Pat alive as long as possible. I decided to say yes to pain meds and hospice. I’ll never know if they were the “right” choices, of course, since in these situations there really are no right selections. My belief is that Pat would have agreed with my choices if she had been able to concur.

          There is another parallel here, I believe. When I looked up the actual risk of an older dog dying from anesthesia, it turned out to be minute. I remember reading and hearing all the time about how dangerous certain medications could be for people with Lewy Body Dementia, but never being told that the actual risk of a negative reaction was very small. If I had known that there was little danger, I would have approved Pat’s pain medications much sooner and she would have had fewer moments of suffering. (I am not medically trained so I am offering my own personal thoughts and not medical advice here).

          I had a little help this time around. I remembered my brother-in-law Kevin ministering to his dog Buddy, who had several similar sacs that had opened. Kevin was incredible as he wrestled with Buddy’s recurrent infections, pain relief pills, and near-death episodes. Kevin and Buddy lasted almost two years, until Buddy passed away.

          As much as I admire and respect Kevin’s effort, I realize I cannot do the same, not after my five-year journey with Pat. I can’t envision the two of us slogging through Kevin and Buddy’s ordeal. Nor can I foresee myself having enough psychological margin to handle that situation. I’d likely end up severely depressed or anxious, or both. I recognize that I am not making a heroic statement here. But sometimes knowing and admitting one’s limitations is necessary. I cannot devote two more years of my life to extreme caregiving, at least not now and maybe never again.

ADDED NOTE: Levi survived the operation and, after two weeks of leash walks and antibiotics, he’s back to his old self and we’re back to our usual routines.

          One time, in my grief group, we were discussing getting involved with a new partner. “Oh, I could never go through this again,” one woman blurted out. At the time I didn’t understand why. Now I do.

          I had been thinking about my choices for four days, so when the veterinarian informed me that Levi’s newly labeled “tumorous” sac could indeed be surgically removed, I told him to go ahead and that I fully understood Levi might not survive the operation.

          Levi’s operation is scheduled one week from today. I have seven days to walk Levi, feed him, play with him, take him to Barks and Recreation so he can socialize, watch for deer, and chase squirrels and bunnies with him. Seven days to love him as deeply as I can, to sneak him extra treats. Seven days to hold him in my heart. That I can do.

 

Ch.212 Am I Abandoning Pat?

August 2023

          It was about 4 p.m. I’d been busy all day with chores, visiting my horse, walking my dog and my cat, socializing with humans, reading, drawing, dining…

And then: “Oh God, I haven’t thought about Pat all day.” Immediately I felt a wave of guilt. Here I was, having a perfectly normal day, a good day, and I hadn’t shared one iota of happiness or sadness; I hadn’t talked with Pat; I hadn’t even pictured her in my mind.

          I guess you could call this feeling “survivor guilt.” At least that’s what one person in the Beyond Lewy support group named it when I asked the members of that forum if they ever felt this way. Interestingly, about half the respondents said they did have periods of guilt about abandoning their deceased mate, while the other half denied having them. I noticed that a few of the non-guilty parties had been alone for several years while others had remarried.

          I know Pat would want me to go ahead with my life. I’m certain she wouldn’t want me to be paralyzed by the fear of losing her. But I am also pretty sure Pat would want me to remember her every day, at least once or twice. Favorably. Indefinitely. Forever. I’m OK with that idea. It’s what I would have hoped for from Pat if I had been the first to die. Yes, love is generous and kind, etc., but love is also a little greedy and true love even more so.

          When I sat down to write this essay, I thought would conclude that I had no need to feel guilty. But that’s how it’s turning out. For now, I’ll accept my survivor guilt, my abandonment guilt, as a reminder to keep thinking about Pat every day.

 

 

Ch.213 My Two Worlds

Aug 2023

          I attended a two-day workshop on grief recently. My goal, when I attend seminars, no matter how long, is a modest one: to gather one idea, concept, guideline, or model that I will remember and make use of. Here’s the one I came away with: the Two World Model, more officially called the Dual Process Model.

          FIRST WORLD: Coping with Loss. When I’m in this world I’m thinking about Pat a lot, feeling sad and crying, remembering our times together, sitting beside her grave, visiting the place where I surrounded three trees with the thousands of rocks Pat collected, looking at photos of what we did together, reminiscing with my children or friends, and smiling when I recall something joyful we shared. I’m here, in the present, but oriented toward the past.

         SECOND WORLD: Restoration. When I’m in this world I’m signing up for Learning in Retirement talks, meeting old and new friends, developing new interests and activities such as colored pencil drawing, finding meaningful activities to pursue (facilitating support groups, including one for dementia that Pat and I previously attended as participants), trying to convince Levi to swallow his antibiotics, thinking less about Pat, and crying less often. I’m in the present but more oriented toward the future than the past.

          It’s not like I camp out in one or the other of these worlds. Rather, I seem to flow from one to the other, sometimes gracefully, for example when taking Levi for a walk reminds me how he was Pat’s constant companion, and sometimes jarringly, as when I am suddenly interrupted by a wave of grief while seemingly doing nothing to precipitate it.

I’ve never quite understood or felt comfortable with the meaning of the phrase “getting on with life.” I thought it meant leaving the First World forever. But now I realize it doesn’t have to be that way. I can and certainly will spend time in that world for the rest of my life. But in the meantime, I can also meander through the Second World. I don’t want to get stuck in the first world of unending sorrow, nor do I intend to forget Pat as if she were a forgotten chapter in a misplaced book.

 

 

Ch.214 An Unexpected Invitation

August 2023

There is an organization of volunteers in the Eau Claire/Chippewa Falls area who run an open-ended support group for grieving individuals, mostly for spouses of loved ones who died from cancer or dementia. I have been attending the group and respect the facilitators greatly. I was surprised, though, when Wendy, the leader of that organization, called to ask if I’d be interested in joining them.

The first question I had was this: Am I ready to support others in their grief when I have only spent just over one year processing my own? “No,” I decided, not if it would mean abandoning my group. I still feel the need for support from the facilitators and group members. But it turned out that I would co-facilitate a different group, a six-week closed group, the kind where people sign up and stay in the group the entire time, with no new entries during that period.

My second question: Do I need to be “finished” processing my grief before offering to help others with theirs? That answer came quickly: “No,” because from what I have learned nobody ever totally completes grieving. Rather, over time one’s grief usually mellows, with episodes becoming less intense and less enduring over time. That is true in my situation; when I think about how much I miss Pat I have mostly exchanged sobs for sighs and minutes for seconds.

My third question: Do I have the skills to help other grievers? “Yes and no.” Yes, because I have both training and experience facilitating groups in many areas: anger management, domestic violence, Lewy Body Dementia, Huntington’s Disease, Hemophilia, and memory loss. No, because I don’t have the specific knowledge base in grief that I would need. For example, I couldn’t immediately tell people the difference between “normal” grief and “complicated” or “prolonged” grief. I shared this concern with Wendy. “Well,” she said, “That’s why I’m calling you now. There’s a two-day training beginning next week, and they still have openings. It’s an excellent training program that all of us attended before we began our group.”

I decided to give the training a try. That way I would get the knowledge base I needed. Additionally, though, I believed it would provide an important test. If I felt emotionally overwhelmed during those two days, crying a lot, becoming angry, or just excessively distracted, I would back off because it wouldn’t do others any good if I were to fall apart or project my emotional needs onto them.

       Fortunately, the training was indeed excellent. Some parts were difficult, namely the ones that reminded me of Pat’s suffering as well as my own, but that was ok. I did realize I am not prepared to help people who have survived their loved one’s suicide or a child’s death. That would take a lot more training, especially in trauma work. Such training might come later, but for now I do feel prepared to co-facilitate the six-week group described above.

          That doesn’t mean I’m not scared, though. I feel a strong sense of responsibility when I facilitate a group. People trust me with their secrets, their emotions, and even their lives in these groups. Although I’ve facilitated hundreds of support and personal growth sessions, I become anxious every time before I start, remembering my responsibilities, as I think I should. I know I’ll be doubly anxious beginning the grief group; thankfully, I’ll be Wendy’s co-facilitator and I can follow her lead.

          So, please hold me in your heart or pray for me that I can help those who grieve to feel safe and comforted in my presence.

          Thank you.

 

 

Ch.215 Griever’s Nightmare: Weekends

August 2023

I was sitting beside a woman I’ll name Betty during our grief group meeting when she began shouting. “I hate weekends,” she yelled, “I hate them.” She talked about how lonely she felt on weekends: alone, abandoned, empty. There were never enough things to do or people to see on Saturday and Sunday. Her friends were busy with their families; Her children didn’t call; Her volunteer activities took place during the week. All she had on weekends were her television and her loneliness.

Betty wasn’t alone. Every participant, including me, nodded our heads in agreement. Weekends are the enemy, a black-clothed shadowy villain constantly reminding us that our lives are empty of activities and meaning. Lives that had been purposeful now felt useless – on weekends.

We grievers are not like lifelong singles, many of whom cherish weekends as time for themselves. And, probably not accidentally, all my fellow group members used to be 24-hour care partners; Betty, for example, was her husband’s primary caregiver for the last 10 years of his life; I was Pat’s for 5 years. We didn’t exactly have weekends, at least not these lonely times. We were blessed with the gift of constant companionship. Apparently, we got used to it (we “became habituated,” my psychology friends would say). And then, in a moment, that life ended with the death of our partner.

I wrote about this concern once before (Ch.184, “Time is In My Hands”) in which I described how changing the saying “Time is on my hands” to “Time is in my hands” helped me feel less passive and more in control of my life. That small change has helped me every day. However, weekends are still weekends. It takes more energy and effort to stay active; in particular, meeting my need for social interaction is much more challenging on weekends than weekdays. Sure, I could go to a movie to kill an afternoon, but I would be going to that movie by myself. Alone. That’s not as enjoyable as being there with friends and it’s definitely not as meaningful as going with Pat, wheeling her through the theater until we found a place where she could see the film.

I did have a thought near the end of our group session: why don’t we call each other on weekends or perhaps schedule a weekly lunch together? I plan to make that suggestion next time. That could help at least a little, although I’m sure we’ll still be shouting “WE HATE WEEKENDS” indefinitely into the future.

 

 Ch.216 Feeling Empty on Pat's Birthday

Sept.1, 2023

          Something felt wrong the moment I awakened, about 6 a.m. today. I felt hollow, an emptiness in my belly. Blackie, my cat, was his usual self, though, purring for attention; I petted him for five minutes, feeling a little comforted in the process. Even so, that hollowness remained.

          And then I remembered: today was Pat’s birthday, her 79th and the second birthday she’s had after she died 14 months ago.

          Since I got out of bed I’ve read 50 pages of a novel, fed my collie Levi, eaten breakfast and lunch, washed dishes, vacuumed, visited my horse Lakota at his senior paddock, watched a science video with my daughter Jenny, read the newspaper, solved a word puzzle, walked with Levi to the creek, looked at my daughter Cindy’s text, spoken with my son Joshua, conversed with my friend AnneMarie, and received an email from Pat’s cousin Peg. I’ve cried. I’ve told Pat how much I missed her. And I’ve continued to feel hollow inside.

          My emptiness reminds me that Pat has died and will never return. it insists I acknowledge that reality. There is no denying the truth. Pat is gone.

 My emptiness strolls with Levi and me on our walk to the creek, dimming the fall colors; it is there as I hand a piece of apple to Lakota, making me wish that Pat were here giving him that treat; as I write, my emptiness flows into my fingers, onto the page.

Levi rests, as usual, at my feet. I imagine how ecstatic he’d be if Pat were to walk in the door, greeting him after a brief absence. I cannot imagine what I’d do, though, because I know it will not, cannot happen.

My emptiness isn’t an enemy. It is a presence. Tomorrow it might fade a little, maybe go into hiding for a while, but I doubt it will ever leave. 


Ch.216 Feeling Empty on Pat’s Birthday

Sept.1, 2023

          Something felt wrong the moment I awakened, about 6 a.m. today. I felt hollow, an emptiness in my belly. Blackie, my cat, was his usual self, though, purring for attention; I petted him for five minutes, feeling a little comforted in the process. Even so, that hollowness remained.

          And then I remembered: today was Pat’s birthday, her 79th and the second birthday she’s had after she died 14 months ago.

          Since I got out of bed I’ve read 50 pages of a novel, fed my collie Levi, eaten breakfast and lunch, washed dishes, vacuumed, visited my horse Lakota at his senior paddock, watched a science video with my daughter Jenny, read the newspaper, solved a word puzzle, walked with Levi to the creek, looked at my daughter Cindy’s text, spoken with my son Joshua, conversed with my friend AnneMarie, and received an email from Pat’s cousin Peg. I’ve cried. I’ve told Pat how much I missed her. And I’ve continued to feel hollow inside.

          My emptiness reminds me that Pat has died and will never return. it insists I acknowledge that reality. There is no denying the truth. Pat is gone.

 My emptiness strolls with Levi and me on our walk to the creek, dimming the fall colors; it is there as I hand a piece of apple to Lakota, making me wish that Pat were here giving him that treat; as I write, my emptiness flows into my fingers, onto the page.

Levi rests, as usual, at my feet. I imagine how ecstatic he’d be if Pat were to walk in the door, greeting him after a brief absence. I cannot imagine what I’d do, though, because I know it will not, cannot happen.

My emptiness isn’t an enemy. It is a presence. Tomorrow it might fade a little, maybe go into hiding for a while, but I doubt it will ever leave. 

Ch.218 What Happened to “Us” When Pat Died?

Oct. 2023

                The day Pat died, I felt as if I was being split in two. Why was that?

       Last week I wrote how our brains keep searching for our missing partner long after that individual has died. In fact, that search process seems to be the essence of grief, its reason for being. However, I need to ask one more question before I can better understand why my grieving has been such an intense experience. That question is this: What happened to our “us” when my partner died?

          I think American society is not very good at discussing the word “us.” For one thing, my generation grew up idealizing the word “me,” as in “I can do it myself.” I doubt Frank Sinatra would have had a huge hit if he had sung “We did it our way” instead of “I did it my way.” Men, especially, were given kudos for not needing anybody and even more so for not having messy feelings.

          However, the word “me” seems irrelevant when it comes to grief. It wasn’t “me” that ruptured when Pat died, it was “us.”  Over 57 years Pat and I gradually merged, certainly not 100%, but enough that it would have been hard for me to say who I was as a separate entity. Over time, as we comforted each other, made love, put on a workshop, even had an argument, we created a mutuality, an “us.” A beautiful “us.” A sacred bond.

          Pat’s death shattered that union. It wasn’t her fault. Her smile warmed my entire being until the day before she passed away. But then she died, and no matter how often I try to tell myself we are still together or that I hold her in my heart, the truth is I have only “me” now – and that feels like a consolation prize.

          I do feel traces of our “us,” though, thankfully. I glance up and see Pat laughing with me on a picture someone took of us together. Sometimes I remember and even feel in my body the comfort of holding her. Our “us” is like a phantom, a ghost faintly illuminated by my memories.

          I’m doing decently now, 15 months after Pat died. My “me” is functioning adequately, sometimes better than adequately. I walk my dog, warm my cat. I have kept previous “couples” friends and made new single friends. I have three loving and supportive children and their families. I can honestly say that life is good. I am accepting my new reality. Still, my honest answer to the question I asked earlier, what happened to our “us” when my partner died? is that our “us” died when Pat died. As much as I loved Pat, and still love her, I feel that I must accept that reality so I can continue my own life’s journey. 

Ch.219 I Feel Too Full of Feelings

Sept. 2023

          Do you remember the phrase from a John Denver ballad (“Annie’s Song): “You fill up my senses”?

          I don’t know why, but so far this morning I have had the feeling that my senses are full, meaning I am especially sensitive to sights, sounds, touches, smells, tastes. Every sensation immediately links with my emotions, so watching my cat Blackie checking for cars on our walk fills me with fear; seeing six little sunflowers sprouting from the last sunflower of the season makes me laugh with joy; waving hello to the driver of the car passing by makes me feel communally bonded to a total stranger; and even a momentary thought of Pat produces tears.

 Writing helps me get through days like this, keeps me from feeling overwhelmed.

I began today reading the novel “Klara and the Sun” by Kazuo Ishiguro, the author of “Remains of the Day.” Klara is an AF – an Artificial Friend –of a sickly and possibly dying girl named Josie. Klara senses all the nuances of her humans’ feelings, how Josie or her mother may simultaneously feel happy, angry, and a little sad. Through Klara, the author paints a picture of a family wounded by tragedy, past and (possibly) future. I don’t know how it will end. I do know that Ishiguro is a master of the dramatic pause, followed by silence. This might not have been the best day for me to read Klara. I felt dread creeping into my body, that “this is not going to end well” feeling like in an Alfred Hitchcock thriller.

By then my old collie Levi had awakened and joined me on the couch. We sat for a while and then I fed him. After that, we went for a walk with Blackie the cat, to the bridge over the little stream named Big Creek. When Blackie joins us, I walk slowly so he can keep up, or, more accurately, he can keep behind but not too far. Blackie needs continuing reassurance that all is well. He checks behind him about every thirty seconds to ensure that nothing evil is following him. Today I felt his fear better than in the past. It is ancient, the terror of a predator about to become prey. He and I were greatly relieved when we reached the safety of our home. We congratulated each other on our mutual courage, though, as if we were soldiers who had survived another scouting foray behind enemy lines.

          As for my grief, I’m acting like Blackie, checking behind me to see if it’s catching up with me. I know if I glance at Pat’s picture I will cry because I just did glance and I did cry. The problem is that when I am full of feelings, I am like a dam already filled to capacity. One more rainstorm, and I will overflow and flood the land.

          What a mixed blessing, to feel undefended against pain and love.

Ch.220 Please Worry Just a Little

Sept. 2023

          There is a special look reserved for people talking to someone in mourning: closely attentive with sad but searching eyes. This look’s verbal translation is something like “I feel so sad for you, and I’m worried about you too. I’m checking to see if you’re falling apart.”

          Early on, I greatly appreciated that look, which I received from my children, siblings, friends, even casual associates. I needed to know that they were there. As Allison Krause sings in one of her ballads (“You say it best when you say nothing at all”) I know you will be there for me “if ever I fall.” I’ve noticed, too, that this look has gradations. As I’ve gradually recovered from the shock of losing Pat people still are sad and attentive, but only if we are speaking about Pat and with less intensity than before. Now it’s less like they are immediately ready to catch me when I fall and more on standby duty.

          My three brothers, their wives and I share a monthly zoom “brothers” session. We met last week when I happened to be feeling particularly positive and robust. I decided I could let them know they didn’t need to worry about me anymore, that I no longer needed their mourning watchfulness. I told my siblings that I know they’ve been worried about me a lot and that I was doing much better now, so they didn’t need to worry about me any longer.

          But then I thought about what I’d just said and decided to backtrack. “You can still worry about me a little,” I told them. I admit that I still stumble from time to time as I learn how to live life as a single person. I might fall, albeit more like from a first-floor balcony than the top of a skyscraper. I’m grateful that I have many caring people in my life ready with a net.


Ch.221 Evidence of Healing: A Tale of Two Vacations

Oct.2023

          Last May I flew to Canada to visit my brothers Don and Art, eleven months after Pat’s death. Last week I flew to California to visit my brother Brad and his wife Donna, fourteen months after Pat’s passing. Only after I returned home from California and had time to think did I realize that I had unknowingly crossed a border sometime during the three months between visits. If that border had a name, it could be called Ron’s New Life.

          I spontaneously burst into tears twice when I was with Don and Art, once at a dinner party when the host simply asked what I was doing for fun lately. “Grieving,” was my first thought. I was still preoccupied with Pat’s death and my suffering, to the point that having fun was out of the question. I did enjoy my visit, but it was as if I were camping on a foggy day, wishing the mist would clear so I could see the beautiful scenery around me.

          My time with Brad and Donna felt different. I had fun, for instance, when we went to watch a 1980’s film of a Talking Heads concert. I laughed without a follow up sigh. No sudden sobs. We went for a walk in a redwood forest, and it was as if the fog had cleared, literally and figuratively. Even when Donna and I “reminisced” about a terrible episode the last time we saw them, when Pat went missing for eight hours (Pat had taken our car to meet Brad and Donna for breakfast, got lost and couldn’t find her way back, until she could and did – my first realization that our old life was ending and the Lewy Body chapter was beginning) I didn’t cry, although I certainly did feel plenty of emotion.

          Healing my grief is something I don’t have a lot of control over. Some control, yes. It’s up to me to establish new relationships, find interesting things to do, and create meaning. But my brain and body possess the wisdom of thousands of generations of individuals who have mourned the loss of their loved ones. Evolution has crafted an effective healing process, one that takes time and allows for a gradual transition from living as a couple, an “us,” to living alone as a “me.” This process has taken me from “Losing Pat is unendurable” to “Losing Pat is awful but survivable” to “Losing Pat is painful, but I can envision new paths to happiness” to “I will always remember Pat as I live a new, good, meaningful life.”           The dual process model of healing tells me that I won’t stay continuously on this side of the border. Rather, I expect to travel back and forth frequently between the one land in which my primary occupations are remembering and mourning and the other in which I am living my new life. But now I hope to spend most of my time in my new country, the one labelled “Ron’s new life.”


Ch.222 Wailing on the Day Pat Died

Oct.2023

          The new six-week grief group that I am co-facilitating met for the first time on Tuesday. Halfway through the group, Wendy, my fellow facilitator, asked people to “share a little more about your experience.” And then she turned to me and asked me to start.

          All right, I considered, should I play it safe? For instance, I could talk about where I am now, 15 months into healing, maybe tell the others how my sobs have gradually become sighs. But if I play it safe, I’ll be communicating that message to the group: You, too, shouldn’t take any chances right now. And so, I decided to tell people about the day my wife lay dying. Specifically, I recalled the five-ten minutes I “wailed” at Pat’s bedside. Later, I realized I had never mentioned that episode in my own grief group, the one I’ve been attending for months. Nor do I remember writing about it here. Perhaps I needed to wait over a year before feeling safe enough to remember.

          “Wailing” is defined as “To express sorrow audibly,” a lament, to give a cry of pain or grief, to howl, bawl, keen, sob.

          I sat beside Pat, holding her hand, with my family, watching Pat’s steady journey toward death. Holding it together as best I could. But then I couldn’t any longer. I began sobbing, not crying, sobbing, loudly, louder than I’d ever cried before. Howling.

 I have a part of me that stands apart from my emotions; that part of me was dumbfounded. “What the Hell are you doing, Ron?” it asked, “This is embarrassing.” Meanwhile, the rest of me wailed, sobbed, snorted, gasped, and bawled. Endlessly. And then, my daughter Jenny spoke gently, asking me if I needed some time alone with Pat. “Yes,” was all I could manage. They departed and then I was alone with my dying wife. And I could tell her I loved her, whispering. But not good-bye. My wailing wasn’t an acknowledgement of her dying. It was a desperate plea to come back; Don’t leave me here, alone, I was begging. I need you here, with me, forever.

Pat made no response. She didn’t open her eyes, smile, and tell me she loved me too and would stick around a little longer. Nor did she take one last breath and pass away in my arms. She was too busy finishing her journey to be able to attend to my plea.

It was unfair for me to ask the impossible from Pat. She couldn’t respond no matter how desperately I wailed. But I had to ask because right then it was hard for me to believe I could live without her. In some ways, it still amazes me that I can.

Ch.223 My Grieving Brain

          Oct.2023

          About eight months ago I made an appointment with a neurologist at Mayo Clinic in Eau Claire, WI, asking for neuropsychiatric testing. I did this because I was pretty sure my brain wasn’t operating efficiently or effectively. I felt “foggy,” meaning that I was thinking slower than usual, and nothing seemed clear. Imagine trying to work on a jigsaw puzzle in a dim light with half the pieces turned upside down. That’s what going to the store to buy groceries felt like, as did trying to comprehend my Great Courses dvds on WW1. Something was wrong and, having seen what dementia did to Pat, I feared I was heading in that direction.

          I met with Dr. Nye, my neurologist, in May. He had me take tests to ensure I wasn’t thinking poorly due to diabetes, vitamin deficiency, or some other primary problem. The next step was to be a thorough set of neuropsychology tests, which Dr. Nye explained, I would receive asap, meaning in about 6 months. And, finally, that date, Nov. 13, is approaching.

          Today, though, I no longer believe I have a thinking problem. My jigsaw skills are good again (though not nearly as good as my daughter Jenny’s) and I find myself eager and able to learn new information. I even offered to cede my appointment to someone who might need it more, although I was told it would be good to establish a mental baseline for me that might help in coming years. So, I’m going, unless I forget, of course.

          Today I googled “Grief Brain.” I found a well-researched study indicating that men going through spousal grief have a “significant but moderate” deficit in speed of processing and perhaps working memory, while women undergoing spousal grief have a deficit in working memory. The authors summarized their results with this sentence: “Overall…on average the bereavement has a negative, but modest, effect upon cognition, and the rate of cognitive decline is greater for men than women.”

          But why this decline? Tensie Holland, LSW, explains what’s going on: “Your brain is focused on the feelings of grief which leaves little room for your everyday tasks.” She says that “grief brain” affects one’s memory, concentration, and cognition. To me, that’s like my brain saying: “Don’t bother me with the details of life right now, I’m too busy dealing with this terrible loss.”

          Early on after Pat died, I took an online pencil drawing class. I began drawing and all went well, until I plunged for a set of 110 pencils, at which point I quit! Now, in retrospect, I believe that purchase represented a transition from unserious hobby to serious “I can get good at this if I really work at it.” And my brain simply wasn’t ready to work that hard on something other than grieving. My brain shut down my interest without an explanation, though, and I’ve been confused about it until now. Perhaps that’s a good example of grief brain in action.

          I’m going ahead with the tests in two weeks. I am a little concerned because my memory, always bad, is probably worsening gradually. But memory aside, I hope I will be informed that I have a pretty well-functioning brain for someone my age.

LATER NOTE: I went, I tested, I passed. No cognitive deficits (But still a lousy memory).


Ch.224 Walking at Daybreak

Nov.2023

7:15 a.m. 27 degrees Fahrenheit. Just a hint of light in the sky.

Time for a walk.

          Blackie, my cat, has been awake a while, looking out my bedroom window. Levi, my beautiful collie, just came out of his bedroom, yawning. They are ready to go out with me now. We’ll head toward the creek, just one-half mile away. And I’ll walk slowly so that Blackie can keep up, since he gets a little scared moving in this direction, away from our neighbors.

          I’m walking northeast, in the general direction the sun rises at this time of year. Officially it won’t rise until 7:47 a.m. But it seems as if every step I take coincides with another sliver of daylight shimmering through the trees. Black to grey, grey to pumice white, pumice to silver, silver to icy blue.

          No cars this time of day. Quiet, except for a morning cry from a pheasant.  Not even a breeze. Silent, except when I hear Levi’s feet hitting the ground as he jogs to catch up with me. The creek is silent, too, now that it is no longer swollen from recent rains. I walk onto the bridge over the creek, studying how the water is deep and narrow on the north side of the bridge but wide and shallow on the south. And I remember, now as I write, how Pat taught our grandchildren to play “pooh sticks” on that bridge, each child tossing a stick onto the north side and then dashing over to the south side to see which stick floated through first. And I remember Pat and I throwing pebbles off the bridge to Merle, our 100+ pound Blue Merle shepherd, standing in the creek, as he barked furiously and tried to catch them.

          It’s light enough to notice a little fog around the nearby woods. It won’t linger long as the sky looks cloudless. Some of the trees are leafless now, while the rest stubbornly cling to their brown and desiccated memories of summer. Some, surprisingly this late in the year, still have green leaves. I’d like to be like those trees, keeping my leaves green as I age into the winter of my life.

          We turn around to head home from the creek. Often, we walk further, but this time I want to get home just as the sun rises at 7:47. On the way there Levi spots a deer and bounds after it, not to catch the deer (he never has and never will) but just so he can keep his hunting skills intact, his wolf instincts alive. Go, go, go, I think, a loving parent proudly admiring his child’s competence.

          We’ll walk again later today. Sunset is at 5:50 p.m. 

Ch.225 Pat and Judy’s Radiant Smiles

Nov. 2023

          Most Wednesdays at noon I eat lunch with my friends Richard and Jerry. Jerry, like me, is a widower; Richard’s wife, Judy, is a resident at Azura, the same memory care place where Pat lived until she died. During lunch today, Jerry mentioned that he was going to visit Judy right after our meal. I asked if I could meet him at Azura, to see Judy. I hadn’t seen her for a couple weeks because Judy’s room is in a separate building from the one at which I volunteer. Richard agreed and I met him again just as he was about to enter the building.

          Richard and I walked in. Judy was sitting with others, watching a tv program. Richard tapped her on the shoulder, she glanced up, and Judy smiled –a radiant, light up the room smile. A “You are here, my love, and everything is perfect” smile, the kind of smile that makes everyone who witnesses it also smile. A smile that makes you agree that life, at this moment, is good.

          Sometimes, when I entered Pat’s room, she would smile at me just the way Judy smiled at Richard. She might not be able to say my name or specify our relationship (one time, when asked who I was, she called me her “big squeeze”). But that special smile, the one she reserved for me, was wonderful to receive. Pat’s radiant smile told me she felt safe, comforted, connected, complete, and loved. It didn’t matter at that moment that we now lived apart or that she was close to dying. What mattered was that we were together, forever.

When Pat smiled like that, time stood still, just for a moment, so I could record her smile into my long-term memory. Sitting here as I write, I can close my eyes and see her, laying in bed, glancing up, beaming with joy. I can feel myself smiling back, absorbing her love.

ADDED NOTE. A week after I wrote the essay above, I witnessed a beautiful moment between Richard and Judy. Judy had written an article in 2018 about the Stand in the Light Memory Choir, a memory loss choir of which she was and still is a member. Last night, at Azura Memory Care, Richard helped Judy recite that article, just after a performance by Judy, other Azura memory choir residents, and several guest members of that choir. Judy began in monotone but soon warmed up, finding her speaking cadence and proper inflections. Richard was there to pronounce a difficult word or two, and, even more importantly, to give Judy a boost of confidence.

          I love watching how people in love ease each other’s paths through life, just as Richard did tonight, and I loved watching Judy emerge from the shadow of Alzheimer’s, briefly, to show the world the vibrant woman she is. 


Ch.226 Ron the Extrovert.

Nov.2023

          Last night I attended a “Gala” at Azura Memory Care, in celebration of their record-setting pace in collecting donations for the annual Alzheimer’s walk. I walked in, immediately conversed with a resident and his daughter, hugged another resident, sat at a table with six others and spoke with them all, held a resident’s hand, hugged another volunteer, and happily roamed through the crowd.

          I have always considered myself an introvert. I have always been an introvert, avoiding crowds like this one, or, if I had to attend (being “dragged along” by Pat), hiding at the fringe of the gathering and trying to convince Pat to leave asap. Then I’d find a nice corner at home where I could “unwind” from such a strenuous outing.

          Not anymore.

Today I attended a performance by a theater group sponsored by our local Learning in Retirement chapter. I marched in, assessed the situation, and immediately headed to a table with an open chair, not even once wishing I had stayed home. And then I engaged the three women at that table, sharing names, hometowns, cookie recipes, and dementia tales (At my age everybody has dementia tales).

The other day I mentioned I was an introvert to an acquaintance. “Gee,” she said, “I don’t think you are. You are so active and involved with people.”

So? What’s happening to me? Have I been transferred to an alternative universe in which I’ve always been an extrovert? Probably not. I think the long process of losing Pat has changed me. When Pat was healthy, I could afford to let her be the active one, knowing I could ride into social life on her coattails. Pat did have long periods of depression, though, and as her disease worsened, she became less able or interested in social engagement. Gradually I filled that vacuum; in effect we exchanged roles, although, especially during the two years of Covid, we were mostly isolated. And then, at Azura, I took over, wheeling her in her wheelchair to meals, befriending the other residents, consulting with the staff. And, finally, when Pat died, I realized that I simply could no longer be an introvert. I needed people and I alone would have to find them and keep them.

I used to believe that people were one or the other, introvert or extrovert. Now I have learned the opposite, namely that those two roles can be interchangeable, at least for some people and certainly for me.


Ch.227 I’m Grateful for All Those Who Care About Me

 Nov.2023

          I’ve had three interactions this week that helped me feel connected and cared about by many people.

First, my wonderful neighbors Bobbie Jo and Mark invited me to share Thanksgiving with them and their children. “You are family,” Bobbie Jo told me, and I felt cherished.

          Next, I attended a “Gala” at Azura, the memory care center where Pat resided, at which I am a volunteer liaison. Nicole, the Director, mentioned to the entire group that she and the staff greatly valued my presence there. I felt treasured.

          And, today, I told Wendy, my grief support group co-facilitator, that I was just getting a CT scan; she texted me after the procedure to ask how I was doing and if something serious was going on. I felt supported.

          I started to make a list of many of the people I know who care about me. I was going to write them here. But the list kept growing: friends, grief and memory loss group members, blog readers, family, Lions Clubbers, Azura staff and residents, neighbors, “gestalt group” trainees from programs Pat and I ran in the 2000’s, Pat’s family members who stay connected, and more. I feel blessed.

          When Pat was living you could describe my mental life by drawing a circle with Pat and me in it, enclosed in a circle representing family, and a third outer circle representing all the other people who cared about me. Then Pat became ill, and I devoted my life to being her caregiver; our inner circle took up practically all my mental space. And when Pat died for a while mostly there was just an empty space, an unfilled circle at the center of my being.

          I never realized just how much people cared for me and about me when Pat was living, and I was care-partnering. But now I am far more open to sensing that caring. And, in parallel, I am beginning to recognize how much people mean to me.

          The visual model of my life has changed. Now I am at the center of a vast network of caring people, many of whom are also connected with each other. Each of these individuals is at the center of their own circle, and I am part of their circle of care. I may be the “sun” at the center of my solar system, but also I am part of a much larger galaxy of stars, all of us bound to a common center of gravity.      

     Thank you for being part of my life. For caring. Thank you for letting me be part of your life. For letting me care for you.

Ch.228 I Can See Pat Better Now

Dec.2023

          C.S. Lewis, in A Grief Observed, writes something that caught me completely by surprise: “…passionate grief does not link us with the dead but cuts us off from them… It is just in those moments of least sorrow…that H. rushes upon my mind in her full reality, her otherness.”

Similarly, he states that “And suddenly, at the very moment when, so far, I mourned H. least, I remembered her best.”

          Here’s what Lewis means. When he, engulfed in the agony of earliest grief, thought of H. he couldn’t see her as she was, as a real person. Instead, he idealized her, made her into a God, convinced himself that he could never get over her loss, desperately wanted her to return to him so she could comfort him and heal his wounds. Lewis needed her for his sake, not hers.

          Later, though, as he recovered his balance, Lewis believed he could see H. as a real individual, not as his missing guardian angel but as his actual long-time lover, as someone put on earth with her own reasons to exist. H. lived not as a figment of Lewis’ imagination, then, but as a separate and distinct person. And now H. had departed. Never to return.

          I cannot entirely agree with Lewis that I see Pat better now than when my grief was most intense. Rather, I think I perceive her differently after 17 months of widowhood than before. Early on she was lightning and thunder; now she is a quiet rain and sometimes a sudden shower. Before I could see her all too clearly as I continually replayed watching her take her last breath; now she is fading in my memory -- I need to look at her picture to fully remember her features. But I do agree with Lewis about one thing; now I can sense Pat more as a separate being, more of an “I” and less of an “us,” as I am learning to see myself.

          Pat lived and I am grateful to have met her, fallen in love with her, married her, and raised three children with her. In many ways I became one with her. And now I am grateful that I can say goodbye to this marvelous person, not needing her to return to diminish my loss. 

Ch.229 My Twin Brother and My New Life

Dec.2023

          My twin brother Don was coming for a visit, his first here since shortly after Pat died. Eight days, including travel time. What to do? It’s not like rural Wisconsin in winter is full of possibilities, at least not since neither of us hunt, fish, snowmobile, or cross-country ski. And, of course, Pat wouldn’t be here to make suggestions.

I did find a film festival in nearby Eau Claire and planned a visit to St. Paul to see our friends Paula and Erik from the Lewy Body community, and then to visit the excellent Russian Art Museum in Minneapolis. And we would spend time with my children: Cindy in Rochester; Jenny, Jeff, Joshua and Patty at my home. That still left a lot of open time on my calendar. And so, I did what I would have done if Don wasn’t coming – I arranged visits with my friends: John, Richard, Jerry, Jeannie, Forrest, Ed and Judy, Cathy. If there had been more time, I would have scheduled several other visits.

Don and I had time to talk, too. And that’s when I realized how much my life has changed over the last 17 months. Before, my life focused upon Pat. As you probably know, I visited her almost every day at Azura, her memory care residence, usually twice daily to help her with meals and just to be there with her as her brain and body faded away. If Don had visited a year and one-half ago, we would have spent much of our time at Azura; I would have hesitated to leave her, even with my children readily available to give me some time to do things with Don.

          But that’s in the past. Pat is gone. And I have a new life.

 

          So, I took (dragged?) brother Don to breakfasts and lunches and coffees with my friends, hoping he’d like my friends as much as I do.

          I’m starting to see that sharing my life with family and friends is what feels meaningful now. In the past friendships complemented my life with Pat; It was as if they were a dinner salad, but our love was the main course. Now friends and family have become the entree. They give purpose to my days. If I had to make a choice between keeping my friends and family vs. continuing to do “important” tasks like facilitating my memory loss and Huntington’s Disease support groups, I would choose my friends and family. I would even make the same choice if I were deciding between just my friends and my important tasks.           It does feel strange to have become so friends- and family- centered now. I’m not used to these people being pivotal in my life. My priorities were always Pat first, then work, then friends and family. Now it’s friends and family first and work is a distant second. Both bring joy. But, at the end of a day, friends and family sustain me. 

Ch.230 Pat Guides Me Through the Desert

Dec 2023

          Last night I participated in my monthly “Brothers and Wives” Zoom session. We had a good time together, sharing jokes, political concerns, and a discussion about spirituality.  My brother Art is 92, Brad is 85, Don and I are 79. Afterwards, I thought about how fortunate we have been to stay alive all these years, especially since all three of our parents died young (Art is my half-brother). 

          I awakened this morning remembering a dream: Pat and I are in a car and I’m trying to go somewhere west, through a desert and on to a coast. But it’s dark and getting darker. It’s the middle of the darkest night I’ve ever witnessed. And I don’t know the way. We seem to be at a crossroads; there is a small gas station nearby, not the big, lighted variety but an older style service station.

          “Pat,” I ask, “will you go into that station and get a map?” She nods her head, opens the door, and starts to get out of the car.

          That’s when I wake up.

          My death is approaching, probably not immediately, but nonetheless approaching. Carl Sandberg writes that, “The fog comes on little cat feet.” I suspect my death will come on little cat feet as well. Perhaps I’ll hear that kitty approaching my bed, perhaps I’ll see it before it lies on my belly. Possibly not.

          Apparently Pat will be my guide for that last journey. That’s kind of her. Makes me feel safe. Well, safer. It’s interesting that she might need a map, though. Perhaps each of us takes a slightly different route through that darkest desert.

          I’m not traditionally religious but I am curious. What happens when I reach the coast? Many years ago, I read about a man named Tom who was dying from AIDS. As he approached his end, his final words were “Well, this should be interesting.”        

    I hope Pat and that kitty aren’t in too much of a hurry. But I agree with Tom. It should be interesting when they arrive

Ch.231 Loneliness Panic Attack

Dec.2023

          It’s 9 a.m. on the Friday before Christmas. I’ve taken my morning walk with Levi. Eaten toast and yogurt with a cup of tea. Begun reading another segment of Remarkably Bright Creatures, this month’s book club selection. So far, I’ve been introduced by the author to one lonely giant octopus and four lonely people as well as to the disappearance of a teenager and the deaths of a husband and brother. The octopus, Marcellus by name, is brilliant but growing old. I doubt he’ll survive the book’s conclusion. All but one of the humans are older and fragile.

          My daughter Jenny would usually come visit today, Friday, but she’s off gathering up her daughter Elizabeth from her dorm room in Madison. My son Joshua will be in Marshfield all weekend with his wife and daughter Tatiany, who is about to move from that city to St.Paul. I have nothing scheduled today and nobody to see. Same tomorrow. Only breakfast with Ed and Judy Sunday, done by 9 a.m. An invitation to drop by on Christmas day from Jenny, to stay for a few hours if I like. And I can’t take Levi to his closed day care center on Tuesday, so that limits my opportunities.

          This is exactly what people in my grief group complain about a lot. Nobody to see, nothing to do. Boredom. Emptiness. Loneliness. So how will I handle it?

          With a panic attack. Or at least the start of one, creeping into my body as I try to concentrate on the book. Panic is something I understand --- my belly tightening, shallow breathing, quickening thoughts, sense of desperation, the child-like need to be saved by a comforting adult. Help me, help me, help me.

 I’m converting loneliness into fear. Why? Because loneliness hurts more. I may shiver with fear, but my loneliness/emptiness makes me want to whimper. To moan at the universe, with no expectation of rescue. Panic attacks always end; loneliness, at least this griever’s loneliness, is eternal. At its core is one single statement: “I will never get Pat back.” Pat will never return.

I’m calming down now. Writing helps. Communicating. I know you cannot heal my loneliness, but you allow me to share it, and I know many of you who are reading this passage endure a similar void. We are alone together. 

Ch.232 Second Christmas Without Pat

Dec. 2023

          I just re-read my blog from Dec.26, 2022, exactly one year ago today. Very positive. Optimistic. Full of caring people. Neighbors. My wonderful children. Even a call from a friend/former colleague. I felt loved. I suspect, as part of their caring, these people were all probably thinking the same thing: “Oh, gosh, it’s Dad’s/Ron’s first Christmas without Pat; I hope he’ll be ok.” I was thinking the same thing: “I hope I’ll be OK.” Christmas was Pat’s special day. She reveled in distributing multiple gifts to each family member; she liked getting gifts as well, especially those with emotional resonance. So naturally we all were thinking of her and feeling our loss that day. We supported each other.

          This Christmas felt different. Clearly my daughter Jenny was still concerned. She invited me to her home on Christmas day, telling me that she didn’t want me to go through it all alone. Jenny asked me how I was doing when I arrived; I told her I was “so-so” and I’m sure she understood. That was the extent of our sharing feelings, which felt right. I spent a few hours there sharing a meal and watching her family, plus Joshua and Patty, and one of Elizabeth’s friends, play a card game. We didn’t talk about Pat.

          I just looked up the differences between bereavement, grief, and mourning. According to Google, bereavement is “the state of having lost a significant other to death;” grief is “the personal response to the loss;” while mourning represents “the public expression of that loss.”

          I’m guessing that my period of mourning is coming to an end. I feel less of a need to talk about my loss to others and less need for their comfort than I did last Christmas. I’ve even begun considering ending this blog, although right now I plan to keep writing it for another six months, through my first two years alone.      

     My grief has changed, too. It’s no longer intense. Remembering Pat brings sighs instead of sobs. Again, I’m guessing, but I think this quieter grief will last my lifetime. I welcome it as a steady reminder of the love Pat and I shared for 57 years.

Ch.233 Eighteen Months A Widower

Jan.1, 2024

          I didn’t anticipate that this anniversary would hit so painfully. I expected 2’s and 3’s on the emotional pain scale, not 7’s and 8’s.

          Sometimes I make the mistake of believing my grief is a linear process. I imagine it steadily receding like a sunset on a partly cloudy evening, colorful but predictable. But that’s not reality. Just as Pat had Lewy Body Dementia, a notoriously unpredictable fluctuating disease, I have grief, another fluctuating “dis-ease.” And this week has been hard. Pat died July 1, 2022; exactly 18 months ago. Happy New Year it’s not. (I accidentally typed “Happy New Tear.” Apparently, my unconscious has an ironic sense of humor).

          I’m back to sudden spasms of tearfulness. They only last a few seconds, but they come on so suddenly and unpredictably they scare me. I cling to the illusion of control, the small human being trying to direct his destiny; these cloudbursts of tears destroy that illusion. If I had been in control, Pat wouldn’t have gotten Lewy Body; she wouldn’t have died, either. She’d be here with me now, sharing our hopes for the new year. But die she did. Eighteen months ago.

          I feel alone today, not lonely. Alone in the universe. When I feel lonely, I miss the presence of other living people. When I feel alone, I yearn for the presence of someone no longer living. Someone gone forever.

Ch.234 Thirteen Pounds of Salt

Jan.2024

          This morning I was cleaning out the closet in our computer room, yet another place where Pat had placed mysterious objects, mysterious in the sense that they seemed to have no useful function. Pieces of rope; a handful of miniature clamps; five thick roles of plastic sheeting. I thought I had finished the job when I noticed one more box hidden in the corner of the closet. That box held 15 containers labelled “large spice jars.” Each was filled to the brim with some white powdery substance. I opened one container and tasted the substance. It was salt, plain table salt. Dried to brick hardness. I decided to carve out the salt to recycle the containers. Then I weighed the salt. 13 Pounds.

I have no idea why Pat “needed” 13 pounds of salt. Knowing Pat, she probably saw the salt, had a brilliant idea (“I could use salt to make ____”), bought the salt, bought the containers, packed the salt into the containers, placed them in the closet, and forgot about them within a couple days. Pat was better at creative inspiration than follow through, a lot better.

I was often critical of Pat when she did stuff like this. “You’re wasting money,” I’d tell her. “All this stuff is taking up space.” “Couldn’t you finish something just once?” Sometimes Pat would feel hurt. Other times she’d say I just didn’t understand her. Frequently she’d insist she would get around very soon to whatever project it was we were arguing about. Pat seldom apologized and she never promised not to do it again. Creative inspiration was just too central to Pat’s being. That’s who she was, and now I wish I had both accepted and appreciated that part of her more than I did. I wonder, each time I find another of Pat’s caches, if this is the last one. I hope not, because every time I discover a new one, I think of her, remembering Pat as the complex, unpredictable, creative, and complicated person I lived with for 57 years. 

Ch.235 Pre-Arranging My Funeral

Jan. 2024

          There are some things one should not attempt to discuss via texting. I found that out when I texted a message to my daughter Cindy that I was meeting with the director at Pat’s funeral home to arrange my funeral. A long silence followed as I imagined her response to this unexpected development. I felt her tears. After a minute Cindy did reply, trying to write the appropriate things, but I knew I had erred. I picked up the phone and called her so we could, and did, have a nice talk.

          I have three good reasons to “pre-arrange” (as the director called it) my funeral. First, if I were to become ill with a long-term and expensive disease (cancer, dementia, etc.) I might use up all my funds before my demise. Then my kids would have to pay for my last rites, which doesn’t seem right. Secondly, I had to make a series of difficult decisions just after Pat died: what casket to purchase, what songs to play, what to write in her obituary, which newspapers to place that obituary. I didn’t want my kids to have to make as many decisions. A third reason, less compelling but important, was that I’ve seen during my counseling career how families can become embroiled in conflict after the death of a loved one. What if my children did have to decide whether to buy a good casket or a better one? What if one says “good” and another says “better?”

          I must admit there is a fourth, less noble reason for my decision. I want to be in control of what happens at my funeral. This way I get to choose, for example, what songs to play in the background as people arrive. Also, since I am agnostic, I prefer that no religious hymns or prayers are part of the ceremony. I won’t tell my children what to say, though, if they choose to offer their thoughts during the ceremony. I know they will speak from their hearts.

          My daughter Jenny and I met with the funeral director a few days ago. I purchased a life insurance policy that hopefully will keep pace with inflation. We chose a casket, the same as Pat’s. In fact, I want my funeral to play out much like Pat’s.

          When I called the mortuary to begin this process, the answering service woman asked me if I was in hospice. I am not in hospice and hopefully won’t be there for another decade, but pre-arranging my funeral has forced me to think about my mortality. Somehow, even witnessing Pat’s journey, I’ve never really considered my death. Intellectually, of course, I know I will die. I could say I’m not scared by the prospect; more honestly, emotionally, I’m still numb to the idea. Perhaps now I am ready to feel death at a deeper level. And that is scary.

Ch.237 Night Out with the Guys

Jan. 2024

          Like many widowers, I hesitate to go many places alone where most people go as couples: restaurants, theaters, vacation journeys, etc. So, when I noticed an ad for a production of The Importance of Being Earnest,” one of my favorite plays, I asked myself who might be interested in going with me. I thought of a couple male friends, and then a couple female friends, and then family. I chose family, the least daunting alternative. I texted Jenny and Joshua, asking if they and their partners would be interested. It developed that only Jeff (Jenny’s husband) and Joshua could attend; Jenny needed some alone time and Patty was working.

          Off we went. The performance was a little disappointing, we agreed. Instead of the actual play, which takes little time, the performance was lengthened by adding a character named Oscar Wilde (the actual author). However, I did enjoy going out and especially having guy time with Jeff and Joshua.

          But here is what struck me the most. Looking around, I saw dozens of couples come into the theater, find their seats, and ever so casually sit next to each other. I wondered if any of them realized how fortunate they are to have a living partner with whom to share their life; someone with whom they could discuss the play later that evening before they went to bed; someone who they already knew what that person would think about the play before they even spoke. Until Pat developed Lewy Body Dementia, I seldom was grateful in that manner. By the time I did recognize the gift of partnership, I had already begun to lose it.

          I have made a conscious choice to appreciate watching other couples being couples. It’s that or envy, feeling angry at their happiness and wanting bad things to happen to them so they’d be lonely like me. Watching other couples reminds me to be grateful for the 57 years Pat and I shared. To recall things we did together, trips we took, working together, sleeping together, waking to the comfort of having someone at my side.

          I just glanced up and noticed two pictures of Venice Pat took on our visit there (We were invited to train military counselors at a NATO base nearby). I wonder, if I received that invitation now, if I would go there alone? 


Ch.238 Ron, the Lions Club Member

Feb. 2024

          I was at my Lions Club meeting last night where Bill, a long-time member of the club, suggested we make a donation to Vickie’s son Joey: “He needs a special lift so he can get in their car.” There was a pause and then the inevitable follow-up discussion: “Who is Vicky?” “What’s her last name?”; “You know, she’s Jerry’s son.”; “Jerry Jorgenson?”; “Yep.” “Oh, I know who you mean. That Joey, he’s a good kid.”; “And they could use some help. Those lifts are expensive.”; “Let’s’ give him a couple hundred dollars.”; “Oh, maybe a little more.” “$250?” “OK.” “Do we need to make a motion?”; “No, but we’ll put it in minutes.”

          No vote necessary. Unanimity reigns. Everybody knows everybody in Strum, WI.

          When I was in graduate school in sociology at Purdue university, 50 years ago, the scholar Robert K. Merton published a theory that people could be divided into two groups, the “cosmopolites” and the “localites.” Cosmopolites considered themselves world citizens and believed that humans were developing world-wide values and ethics. Localites, by contrast, treasured the unique aspects of individual communities. At a more personal level, cosmopolites tended to develop friendships over a wide geographical area; their best friends might live on another continent. Localites stuck to their communities for friendships; their best bud might live next door.

          Back then, I thought of myself as a cosmopolite. I was a little disdainful of what people called “small town life,” which to me smacked of provincialism (I know, I was arrogant, but’s I was young).

          Then we moved to rural Wisconsin about 30 years ago, settling in on 7 acres near the small cities of Strum and Eleva, with a combined population of 1,600. And slowly, I became a localite. Joining the Lions was the ultimate step. Ice fishing contests. Delivering eye tissue from the local hospitals to the big city. Just last week I designed a “Citizen of the Year” contest so we Lions could honor particularly generous community people.

          My participation in the Lions dropped to zero as Pat deteriorated. Even so, when she died, several members came for her funeral. I realized then that I would be welcomed back if I so chose. It took almost a year of occasional attendance before I was ready to dive back in, but now I get to every meeting. Last night’s session focused upon our upcoming Ice Fishing contest on Crystal Lake. Unfortunately, the lake currently has almost no ice on it, due to this winter’s unusually warm and dry weather. Cancellation, though, was out of the question. The contest is an important community event. Anyhow, we still could stock up the indoor tank for kids to fish and we could serve food and, of course, beer (Only 5 brands this year, though).

          In some ways I’ll never be a real citizen of Strum, WI. I’d have to have been born here to qualify. I’d have to be Christian, not raised in the Jewish faith. I’d have to work with my hands and tools, not with fingers and keyboards. Oh, well. I’ll settle for partial membership. It means a lot to me to have a place in this network of people who all know each other and, most importantly, care for one another. It’s especially important to me since Pat’s death, that sense of belonging to something greater than myself.

Ch.239. Pat’s Lewy Body Brain

Feb.2024 

I have been watching a series of lectures on the relationship between science and religion with a wonderful couple named Lou and Ann. They are scientists who are deeply religious while I am scientifically oriented and agnostic. We’ve had stimulating conversations during and after each lecture as we try to better grasp each other’s worlds.

That’s background. What’s foreground is that in the last class the lecturer, a neuroscientist, showed photos displaying the electrical patterns of two brains, one of a baby or very young child and the other of someone with advanced dementia. They looked identical. As compared with a nonaffected adult, their brains showed little differentiation and little activity in the frontal lobes, where conceptual thinking occurs. I was stunned. Those photos indisputably revealed what happened to my wife’s brain over the course of her last five years. And then an image came to me: Pat smiling, holding her favorite doll. And then another image, this time of a resident at Azura, my wife’s memory care facility, contentedly cradling a doll just as if it were her baby, this image from just last week when I visited there.

I didn’t like it when people brought dolls to Pat. I didn’t want to admit her brain was child-like. I even told myself, against the evidence before me, that Pat was just holding the dolls to pacify her guests. Because, if Pat really liked hanging onto that doll, then she was no longer an adult, no longer my wife. That was a big mistake on my part. It would have been better to accept that right then Pat was indeed holding the doll, smiling, and content. Holding her baby. Still my wife. Still Pat.

One question I’ve asked myself is this: did Pat understand what was happening to her? I think the answer is yes, to the cognitive level she could think at any time during the progression of her disease. As her brain simplified perhaps her sense of her disease did as well. Certainly, our talks simplified over time. Pat didn’t discuss her losses much at the beginning of her illness and never later. She didn’t complain or bewail her fate.

          So now I have two images. First, that awful photo of a brain after dementia strikes and the other of Pat smiling contentedly while holding her favorite doll. I want to focus on the latter. I hope I can.


Ch.239 Two Surprise Visits from Pat

Feb.2024 

          First Visit. Last night I had a dream that involved Pat. Unpleasant. Pat and a shadowy figure drove me to a strange city and dropped me off. They left without waving. I was supposed to get some papers, I thought, but didn’t know what or why. I went into a building to carry out this task; it looked like the place I would go to renew my driver’s license. I reached to my back pocket for my wallet, expecting I’d have to pay a fee. It wasn’t there. No wallet. Oh, damn, I thought, I better call Pat to come back. That’s when I realized my phone was missing too. “I guess I’ll have to ask for help,” I thought. Two men tried to assist me, pulling out ancient cell phones that failed to connect with anybody. At that moment I envisioned Pat and the stranger driving away, oblivious to my distress. I began to panic – and awakened.

          Here’s my interpretation: Pat is gone, forever. I cannot reach her; I cannot call her back; nobody can help me get her back. Unless, of course, I should discover a magic wallet with a ticket to her place or a phone with her call back number. The question is whether I should keep searching for them/her.

          Second Visit. I was cleaning out some old greeting cards from a drawer in my bedroom. Pat collected cards and left most of them empty or written but undelivered. I was about to throw them out when I discovered one that said:

                                                   PUT THIS SOMEPLACE YOU’LL FORGET,

                                                                                  THEN

                                                   WHEN YOU  HAPPEN UPON IT LATER

                                                                     JUST REMEMBER…

                                                                           

                                                                           I LOVE YOU

Pat signed it “Your Pat” and drew a heart.

Pat is gone forever and she’s right here with me. Simultaneously. My poor rational brain can’t make sense of that. 


Ch.240 Grief is Like Three Trees

Feb. 2024

Recently I’ve been struck by the way people talk about the grief process. I’ve been thinking about how these phrases might apply to a tree, say a medium sized red pine tree like we have all over Wisconsin.

Healing. This pine has been struck by a mighty lightning bolt. It’s still alive, though, and over time it binds its wounds and repairs itself.

Growth. This pine is suffering through a drought. For a couple years it has barely survived. But now, gradually, the rains have returned; the pine is beginning to grow again.

Change. This pine was doing OK until another tree grew quickly and blocked it from the sun. It took time but gradually the pine bent its trunk sideways until it got back in sunlight.

Each of these analogies applies to my experience of grief.

Healing. The lightning bolt represents Pat’s death, of course. To the extent you could say that grief is a wound to the soul, one that strikes suddenly and brutally no matter how well you feel prepared, then I was indeed badly wounded by Pat’s passing. And I’ve been healing ever since. To use a medical analogy, it’s as if my broken legs have mended and now I can walk –and enjoy walking –again. Still, that tree will always bear scars from its wounds, as will I.

Growth. The drought is my sense of hopelessness and despair that began after Pat’s death, the feeling that life will never be joyful again. It’s as if one’s soul has been dried out –desiccated. No single shower or storm can renew the urge to grow; rather, it takes a longer period of gentle rains. But gradually my natural sense of optimism has returned, the love of and for life.

Change. Pat’s death is like a tree blocking the light. It ended forever my life as I knew it for 57 years. I’ve had to grow sideways, traveling on new roads to receive nourishment at new destinations. My friends and family have provided many of these paths, for which I am grateful. So has the grief support group I attend. I’m still that same pine tree but with a definite new bent. My greatest change is that I have become far more outgoing and extroverted than before. My life isn’t better or worse; it’s different.

          I like my three pines. They each speak about one aspect of grieving. Together, they show how complicated the grief process can be.

Ch.241 More Losses Coming

March 2024

          My grieving for Pat has shown me I can survive a great heartache. After facing Pat’s demise and death, I figured I could handle just about any future losses. But now I’m not so sure. I’m realizing that instead of my grief inoculating me against future suffering, it has done just the opposite, making me more sensitive to loss. My gratitude for what exists is tempered by my awareness of its ephemeral quality. What is here will soon be gone, “in a moment” as Joan Didion writes in A Year of Magical Thinking.

I’m also aware that it is impossible completely to prepare for future losses. That’s because each significant loss is both universal and unique. The universal aspect comes from deep inside us, the desperate, overwhelming feeling people get when their attachment bonds are severed. But at the same time each loss comes with its own history, its own particularities, its own intimacies. Each loss is special, so my grieving Pat only hints at what I might feel over future losses.

          Right now, I’m looking toward two future losses. The first is that my wonderful neighbors, Bobbie Jo and Mark, are planning to retire and move away in several months. They intend to go nomad for a while, they tell me, driving around the continent as they desire. I’m happy for them because they get to live the future of their choice, something few people, much less couples, achieve.

          Bobbie Jo and Mark are special neighbors. These two have watched my animals when I’ve travelled, grieved with me the deaths of their pets and mine, helped me figure out what to do with the mountain of stuff Pat left behind, and, most importantly, they have been with me before, during, and after Pat’s dementia journey. They feel like family. They are family.

          My second future loss is that of my 92-year-old brother Art. He’s in the hospital as I write, fighting Covid and pneumonia. Art lives in Buffalo, NY, so I can’t easily visit, but his daughter Sonia is keeping me informed. Art’s a complex individual, a retired literature professor who speaks knowingly about both academic and practical topics. He stays quiet during most of our monthly Four Brothers (and wives) zoom sessions, until asked for his thoughts. Then he usually places whatever topic we are discussing in a historical context, adding depth to our conversations.

          My mother died in her 40’s and my father at 60. Art’s mother died even earlier; I think in her 30’s. It’s remarkable that we four brothers have lived long lives: 79, 79, 85 and 92. I’m grateful for that, but I still feel unprepared for Art’s death, whenever it arrives.

          I don’t know how I will react to my neighbor’s departure or to Art’s eventual passing. I won’t know until they happen. I am aware that right now, as I write, I feel shaken, adrift, prematurely empty. It’s as if I am arguing with the universe, telling it that I’ve already lost Pat and that should be enough.

Ch.242 My Horse is in Trouble!

March 2024

          My oldest brother Art is still hospitalized as I write today. But now I’m facing a new emergency. My 25-year-old Quarter Horse Lakota injured his front left leg a couple weeks ago by getting tangled in a fence. It was healing well until a few days ago when he reinjured it; his leg is twice as wide as it should be, and he cannot put weight on it; Lakota can just slowly take a few steps to get to his food or water. Samantha, the owner of the farm where he’s stabled, managed to walk him into a separate stall where Lakota can wait safely until the veterinarian sees him this morning.

          I’ve written before about how much comfort I’ve received since Pat died from my cat Blackie and my collie Levi. But I haven’t said much about going three times a week to see Lakota, bringing him and his senior paddock co-inhabitants treats. Just last week, before Lakota’s reinjury, I lined up five horses in a row by the fence, convincing them each to stay where they were rather than chasing after me, so I could feed them all. That is harder than you might think because doing so means getting them temporarily to quit trying to dominate each other. Essentially you must keep them at a one-horse neck distance from each other; that means I walk down the line from one end to the other, a little like Chinese acrobats used to perform their “Keep about 50 plates spinning” trick on TV when I was growing up. If I go too slow the animals grow restless; go too fast and confusion reigns. Meanwhile, my collie Levi and Dixie, Samantha’s ravenous black dog, are following closely, rightfully expecting that if I’m feeding horses then certainly I should be feeding them too. So, I’ve added dog biscuits to my treat bag, which now contains apples for Lakota and three others (One horse, Annie, spits them out; I’ve been told she only eats apples if you peel them), hard pellets for every horse but Lakota, and soft treats for him (because he’s missing half his teeth).

          I cried when I saw Lakota yesterday. He’s obviously in pain. Worse, I’m not seeing any sign that the swelling is lessening. But I’m planning on seeing him later today and maybe he’ll look better.

          It’s funny how our attachment system works. A person just goes along day to day, more or less assuming that the connections with those he or she loves will last forever, until suddenly something happens that threatens one of those bonds. And then we are flooded with despair, sadness, anticipatory grief, misery, and longing. Lakota and I have been together almost 25 years, since we acquired him from his previous owner after it was determined that a shoulder injury made it too dangerous for people to ride him. I’ve slung thousands of bales of hay in his direction; he’s neighed at me hundreds of times as I return home and get out of my car, both of us jogging to the fence line to say hello. He’s become my friend, my 1,500-hundred-pound pal. But I didn’t realize how much I loved him until now, knowing that I might lose him. Added note: Lakota’s on the mend, still in a one-horse stall, eating well, and his next-door buddy, Shiney, loves apples and biscuits too; so now I’m feeding six horses plus the dogs. 

Ch.243 Life is Good

March 2024

          I was reading a novel by Irish storyteller Niall Williams entitled This is Happiness, when I came across a passage in which Ganga, the husband of Doady, hires a woman housecleaner as his way of both helping his wife recover from depression and alleviating the housecleaner’s poverty.

          “I [Noel, Ganga’s grandson] learned that Mrs. Moore was my grandfather’s surprise and understood she was the least likely emissary of love, and company would be a balm. Knowing that Doady would refuse any such, he had presented it [to Doady]as charity. Knowing that Mrs. Moore would not accept charity, he had presented it to her as an act of kindness to his wife.”

          I laughed a small laugh, the kind you do when reading a 400-page book full of such passages. I laughed aloud. And that felt strange. Laughing is usually a social event; I hear something humorous to me, then I turn to see if others agree, and then I laugh. It all happens quickly and automatically. It’s usually a flawless routine; however, I do have a tendency to see humor in situations others don’t, so not infrequently I’ve been embarrassed by being the only person laughing. But this was different. This was a private laugh, not a social one. I just felt good enjoying my book and my life.

          Then, yesterday, I met my friend Joan, whom I hadn’t seen in almost a year. One of the first things she said to me was that she could immediately tell I was doing a lot better than the year before, when Pat had only passed away about six months earlier. (Joan looked a lot better as well, having recently recovered from a serious medical condition.)  

          Let me say it: Life is good. Not life is survivable without Pat. Not life’s ok living alone. Life is good. I am happy to be alive now: walking my dog in the cold, visiting friends, petting my cat, watching sports on television, facilitating support groups, visiting my children, feeding my horse and his pals, reading, putting together a 1,000-piece jigsaw puzzle one slow discovery at a time.

          Today on my walk I met a neighbor family watching the field across our creek. They’d seen a bear there a minute before, by the edge of the woods. Amazing. Life is full of wonders. I’ve made a commitment on my twice daily walks to look for whatever I haven’t seen before; there is always something new to see, or something old to see in a new way.

          Life is good.

Ch.244 Goodbye to Geezer and Crone

March 2024

          Pat and I were nearing full retirement, but we still had a few income-producing activities: book sales, anger management training, etc. One day I suggested we set up an LLC (a limited liability company) to organize our cash flow trickle. Laughingly, I suggested we name it Geezer and Crone. I was surprised when Pat instantly agreed. And so, we became Geezer and Crone, LLC.

          Most older folks know that a “geezer” is an “odd or eccentric elderly man” while a “crone” is either “a disagreeable old woman” or “an archetypal figure of a wise woman.” Not that I’m odd or eccentric, of course, nor was Pat ever disagreeable, although she certainly was wise. Interestingly, many younger persons have never heard the terms. It has been enjoyable watching the puzzled looks of bank tellers when I tell them I want to withdraw funds from our Geezer and Crone account.

          I’d been thinking for some time that I was ready to close our LLC. There wasn’t any real financial reason to keep it. But, more significantly, that account’s name belonged to us; it was our ironic recognition of (and protest against) the aging process. Recently, every time I went to the bank, I felt a mixture of sadness and pleasure, sadness encountering Pat’s absence and pleasure at memories of her presence. Too much emotion for a trip to the bank.

          Yesterday I closed the account, except I was told I must bring a copy of Pat’s death certificate to the bank to finalize the transaction. An unexpected and painful surprise.

          Goodbye, Geezer and Crone LLC. Goodbye to our protest against aging. That title meant a lot to us but is no longer relevant to me without my partner. 


Ch.245 Lakota, My Horse, Just Died

April 14, 2024

          I visited Lakota early yesterday morning. He greeted me with a full-throated neigh and heartedly ate my treats, apple slices and soft biscuits, both good signs. But after three weeks he still couldn’t put any weight on his injured left front leg, and he had lost a lot of weight. Not good. The antibiotics he had been taking since the injury didn’t seem to be working. I waited until afternoon and then sent Samantha a text sharing my concerns. She immediately called me. Lakota had just fallen and couldn’t get back on his feet. They were giving him a shot of cortisol to energize him, but things didn’t look good. Then, 15 minutes later: “Ron, could you come now? We think it would be a comfort to Lakota.” Lakota was dying.

          I got there in time to pet Lakota and help him get ready to pass. Samantha told me that Lakota calmed down once he heard my voice. I cried, as did Samantha and a woman named Crystal who had been caring a lot for Lakota. They told me that everyone at the stable loved Lakota and I could hear the truth in their voices. Samatha said she had been able to help Lakota hobble out to nuzzle noses with his stablemates yesterday and he had a chance to eat a little grass a couple days ago. Acts of kindness that I’m positive he appreciated.

          It took about thirty minutes for the veterinarian to arrive. She administered three shots, the first to calm Lakota, the second to render him unconscious, and the third to help him quit breathing. It was over in minutes; my friend for 25 years was gone.

          Levi’s been comforting me the best he can, licking my hands when I cry. After I finish writing this piece we’re going to visit Pat’s grave. I was going there anyhow on this beautiful 70-degree spring day. Together we’ll sit for a while, then take a turn walking around the cemetery, and sit again. I’ll buy him lunch on the way home. 

Ch. 246 A Chance to Help Others

April 2024

          Azura Memory Care has rooms for 40 people. Usually, only 4-6 residents have living partners; the other 35 or so residents are older women (and a few men) whose children act as their power of attorneys and who come to visit with their families. Recently, though, the census has changed: there are currently 10 residents with spouses at Azura.

          The situation for spouses of residents is complex. I didn’t realize it at the time, when Pat stayed at Azura and I came there almost every day to see her, but I was going through a transition period not of my choosing. I was being transformed, slowly but inevitably, from a married into a single man, from someone whose core identity was that of a husband, with requisite duties and rewards, to a person with responsibility only to myself; from together to alone. I did talk with other Azura spouses from time to time (and to my friend John, coming daily to help feed his mother). I remember wishing I had a better way of connecting with the other people facing that same transition.

          I was surprised a couple weeks ago when Patty, Azura’s activity coordinator, contacted me, asking if I would facilitate a spouse support group, now that the census was high enough to run a group. I volunteer there every week anyhow, so it was easy to agree. And we now have a spousal support group, consisting of about 6 or 7 persons, which met for the first-time last Monday.     

          I need to be a little careful here. It would be easy to project my Azura experiences and emotional reactions to everybody in the group. You could call that the “I’ve been there, and I know all about it” syndrome. Each couple is different, and each spouse’s experiences are unique. Still, there are commonalities: watching our beloveds fade away; staying in love anyhow; trusting the staff but always being ready to advocate; befriending other residents, etc. If I can help the group center on these commonalities, they may be able to help each other get through this difficult time.

          Rereading what I’ve written, I notice I sound a little distant. I think that’s because volunteering at Azura is bittersweet. I love the people, residents, and staff; I deeply appreciate the good quality of care Pat received that I still see current residents getting. But sometimes I have sad memories, such as when I went to visit a new resident’s room at her request, only to realize it had been Pat’s. It’s possible facilitating this spouse group will bring up many of those memories and feelings. I need also to recall that every day I came there, to Azura, was a blessing, an opportunity to forestall that transition to single life.

Ch.247 Ending My “Widower” Identity

April 2024

          “What brings you here?” asked Fran, the lady sitting beside me at a script reading performance put on by a 6 woman play writing group for the Chippewa Valley Learning in Retirement organization. “Well, I’m a widower…” I began, as if that fact alone would explain how I happened to be one of three men sitting here among 250 women. “Oh, yes,” her knowing nod seemed to imply, “You’re lonely and desperate and sad and needy, poor fellow.” She might have added, as I’ve often heard, how it’s much harder for men than women to lose their partner, apparently because men don’t know how to cook or make friends very well.

          Yes, at times I’ve been lonely and desperate and sad and needy during my almost two years of being a widower. But I can cook (I did all the meals while Pat was in early-stage Lewy Body at home) and I have many friends. Most importantly, all those negative feelings only occur occasionally now, 21 months after Pat’s death. More often I feel connected (with family and friends), comfortable, happy, and increasingly self-sufficient. 

          I didn’t plan it this way, but I can look back and see how my grief is becoming less; grief no longer fills every chasm of my being. I understand from fellow grievers that I’ll never completely fill the void caused by Pat’s death. Nor would I want to. But I have a life to live, a complex life not defined solely by loss.

          If grief is a feeling, then being a widower is a role and ultimately an identity. I could stay in that role and identity forever. Some people do – that’s part of what is called complex or complicated grief. But lately I’ve grown increasingly tired of playing the role of widower. Even a little bored. I think I’m getting ready to leave it behind.

          Practically speaking, what would that mean? First, quitting my grief group no later than July 1, the second anniversary of Pat’s death. Second, either ending this blog or perhaps starting a new page maybe called “Ron’s New Life.” My current title, “Living Alone after Lewy Body,” is not intrinsically about grief, but that’s what almost all of the last hundred chapters have been about. I would still volunteer at Azura, though, since going there brings me joy, with memories of Pat when she was living, before I became a widower.

          Quitting the grief group and changing my blog would alter my role. But changing my identity implies something deeper. I want to stop focusing upon my losses and instead look at my gains – time for myself, caring for others, self-care, love for my animals, family, and friends. Being loved by many, liked by more, hated by no one (I think). Gratitude not for all I still have (implying loss) but for all I do have.  

Ch.248 Ron’s Good Deed

May 2024

          Levi, my collie mix, and I walk on the country roads by our home every day. Recently, I’ve reminded myself to notice what’s around me, as against thinking, thinking, thinking, and to notice new things or old things in new ways.

          This morning’s walk took place around 6 a.m., not very long after a night-long steady rain had saturated the fields. That’s when water drives worms out of the ground before they suffocate. And that’s when I find them all over the road, presumably because the roads are drier than the fields.

          Now usually by the time I walk the sun would have emerged and baked all the worms. But this morning several were still alive, covered with gravel and determinedly slithering over the road. Some were heading in the right direction, back towards the fields, but others were moving the wrong way, into the center of the road.

          I never had a chance to help little old ladies cross the road when I was a kid. Fact is my brother Don and I got lost trying to find our Cub Scout troop on what would have been our third meeting. That was enough to convince us that scouting would not be our destiny. Still, my heart went out to these misdirected worms. How were they any different than a lost dog, or cat, or little old lady?

          There was one, large, rounder than most worms, the kind children dig up to sell to fishermen. I could have let him die, of course, without a second thought. But not today. This time I picked up the fellow, not without resistance (he curled up into a ball, which actually made my job easier), and carried him across the road. But then I saw another. And another… Five in all.  I felt good, especially because I had done something helpful and seen something old in a new way.

          Moral of the story: Who needs to be a scout when you can help little old wormies cross the road all by yourself?


Ch.249 A Woman on My Arm 

May 2024

          I am a 79-year-old heterosexual male. I live alone. I’d like to explore doing some new things in life, in particular going to plays and performances at local theaters. And I don’t want to go alone. Put that all together and it comes out: “I wonder if I could find a woman to attend these performances with me?”

          One thing I’ve learned since Pat died is that if I want companionship, I need to take the steps to find companions. Consequently, I’ve stepped forward on several occasions to ask people to meet for coffee, watch dvd’s on “Science and Spirituality” and “Russian Culture” with me, have supper before going to our grief group, etc. Most of these activities have been with men or couples. But that’s not what I wanted for the theater. I wanted to go “with a woman on my arm,” metaphorically or literally.

          Fortunately, I’ve found a perfect companion. Kay is a member of my book club and the widow of my great friend Howard. At the conclusion of our last club meeting, I asked her if she’d like to go to movies and plays with me, not dating but companioning. She agreed and we’ve now attended two performances, the most recent a play entitled “Other Desert Cities” that centers on a family torn apart by political differences and the suicide of one child. It was a play that needed to be talked down afterwards; I was very glad I had someone with whom I could share my reactions and receive hers.

          We talked about the theater on the way home; we described how we had met our spouses, how we had fallen in love. Not tearfully, though. Just as history, a way of filling in the blanks so we could get to know each other better.           Our last book club selection was called “This is Happiness.” The author equated the word “happiness” with the word “life.” So, this is life and having a new companion is happiness.