The chapters presented on this page were originally written between 2018-2020, representing the first two years after Pat was diagnosed with Lewy Body Dementia and perhaps 3-4 years after Pat's Lewy Body symptoms began altering our lives. This page is intended to help people new to the Lewy Body experience -- "patients," care partners, professional caregivers, concerned friends and family members. Although everyone with Lewy Body develops their own unique set of experiences, we've tried to focus upon issues that a large number of people with Lewy Body confront.
If you also wish to follow how Pat and I are doing as she has progressed into the later stages of Lewy Body, please read our pages entitled "This Week's Lewy Body Dialogue" chapter and "Last week's Lewy Body Dialogue" chapter.
THIS WEEK'S EARLY STAGE CHAPTER:
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.
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WOULD YOU LIKE TO WRITE A RESPONSE TO THIS EPISODE OF OUR JOURNEY? How has it affected you? Have you had similar experiences? If so, go to the "Write us and/or join our new chapter mailing list" page to send a private note to Pat and myself. You may also contact us at [email protected].
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