Ch. 75 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 Read more

Ch. 74   Hoping for a Miracle           Dec. 29, 2020.           Blackie the cat sits on my lap as I consider all that’s Read more

Ch.73 Three in the Morning: Leaving Our Home to Seek Pat’s Home           December, 2020.           It’s 3 a.m. and I awaken to the Read more

Ch.72 An Emotional Roller Coaster Day           November, 2020           It’s become a cliché to say that the Lewy Body experience feels like being Read more

Ch. 71 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.)     Read more

Ch.70 How Can We Keep Pat Involved in the Conversation?           November, 2020.           We’ve had a week of beautiful weather here in Western Read more

Ch.69 I’m Grateful We Can Still Disagree November 2020           I stumbled into a difficult situation a few days ago. It concerned a man I’ll call Sidney, a Read more

Ch.68 “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 Read more

Ch.67 “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 Read more

Ch 66. Something Bad has Happened to Lakota. And Pat has a Fall.           October, 2020.            My horse Lakota and I have established Read more

Ch.65 A Feeling of Helplessness               August 2020.           “Ron, what’s going on in the room above us? There’s crashing sounds and Read more

 Ch.64  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, Read more

Ch.63   Pat has Gumption           My guess is that if you are under 50 years old you have probably never heard the word “gumption.” It truly Read more

Ch.62   Pat Develops a Serious Auto-Immune Disorder           July, 2020.           Pat woke up about a month ago with liquid filled blisters on Read more

Ch.61   Pat has a Second Syncope Episode – but Doesn’t Remember It.  June, 2020. It’s 8 a.m. and Pat has risen to start the day. I hear her exiting the bedroom, Read more

Ch.60   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 Read more

Ch.59 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 Read more

Ch. 58  Care Partner Goals: Safety, Pleasure, Joy           Neuroscientists write that the best thing we can do for a newborn child is to offer that child Read more

Ch.57   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. Read more

Ch.56   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 Read more

Ch.55  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 Read more

Ch.56   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 Read more

Ch.54   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” Read more

Ch.53 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 Read more

Ch. 52 Ending our Book on a Positive Note.. and Starting Another. December, 2019             Pat and I began this dialogue just over a year ago. Many Read more

Ch 51 Many Small Frustrations             Pat has become frustrated with me several times in the last few days. Sometimes she wants me to do something Read more

Ch. 50 Ron Joins the Stand in the Light Memory Choir      January, 2020.        We’ve written before about how living with Lewy Body has provided opportunities for new Read more

Ch.49 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 Read more

Ch. 48   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 Read more

Ch. 47 Our Children Want Us to Move to the City             I’m writing this the day after Christmas, 2019. As my son in law Mark Read more

Ch.46 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 Read more

Ch.45 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 Read more

Ch.44. Two Exhausting Days: Pat Faints on Wednesday but Sings in a Concert on Thursday.             October, 2019.             I had been Read more

Ch.43. Mornings Can be Unpredictable.             I sense the unpredictability caused by Lewy Body disruptions frequently in our mornings together.                Read more

Ch.42. 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 Read more

Ch. 41: 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 Read more

Ch.40. Pat Asks Ron How He has been Affected by Her Lewy Body.             After we discussed our last entry, Pat asked me for more details Read more

Ch.39. “The Apocalypse Arrived and Yet it was Not Apocalyptic.”             This quote comes from the novel Exit West, by Moshin Hamid. The author writes about Read more

Ch.38. What was Supposed to Bring Pride Brings Shame Instead.             Pat belongs to the Stand in the Light memory choir, as explained in chapter 40. Read more

Ch.37. Ron Makes a Serious Mistake – Then So does Pat.             I’ve been going to Eau Claire to exercise at the cardiac rehabilitation center since Read more

Ch.36. Pat Joins a Memory Choir.             August 2019. Several months ago, Pat and I attended a memory care conference in Eau Claire. We walked through Read more

Ch.35. “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 Read more

Ch.34. Pat Realizes She’s been Hallucinating. (Originally written Autumn, 2019. Added Update at End of Essay.)             “Ron, I want the truth. Was anyone here in the Read more

Ch.33. Pat Tells Our Book Club Members She Has Lewy Body.                   Pat and I first addressed the question of whom to tell you Read more

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, Read more

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, Read more

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 Read more

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” Read more

Ch.28. Blackcap Pie, Memory Loss and Confusion.             We had company yesterday morning at breakfast. I made waffles. Then the four of us took a ride Read more

Ch.27. 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 Read more

Ch.26. 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 Read more

Ch.25“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 Read more

Ch.24. 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 Read more

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Ch.23. Adding Structure Challenges Lack of Initiative Caused by Lewy Body.             Q: “Hon, what would you like to do today?”             Read more

Ch.22. Sudden Mood Changes.             When Pat was first diagnosed with Lewy Body I asked several people this question: What is the hallmark of Lewy Body? Read more

Ch. 21    Pat and Ron Confront the Corona Virus           I am writing in early March 2020, about one month after the Corona virus emerged in Read more

Ch.20: 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 Read more

Ch.19. 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 Read more

Ch. 18: Not Driving – A Blow to Your Sense of Self.             Do you remember how proud you were when you passed your driver’s test, Read more

Ch.17. Slightly Unusual Behaviors (SUBs).               Pat has never been a model of conventionality. In fact, she’s sometimes     decidedly unconventional. For example, for years Read more

 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 Read more

Ch.15 First Pat and then Ron Join a Memory Choir   First Pat Joins a Memory Choir.             August 2019. Several months ago, Pat and I attended a memory care Read more

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 Read more

Ch. 13. Mortality.                      Pat and I attend in St. Paul a Lewy Body group for people with Lewy Body and their Read more

Ch.12. We Are Still a Team.                     I’m writing this passage on the coldest day in decades here in rural Western Wisconsin: minus Read more

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 Read more

 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 Read more

Ch.9. Physical Intimacy: Hugs and More.             My friends and family have been a wonderful support for me during these Lewy Body days. Recently I was Read more

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 Read more

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? Read more

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. Read more

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 Read more

Ch.4. Good Days. Coping with LB 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 Read more

 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 Read more

            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 Read more

                        Mornings are interesting in our LB world. Pat frequently awakens in the midst of a dream world in Read more

The Dialogue.       Pat Potter-Efron was diagnosed with Lewy Body dementia in April, 2018. Since October, 2018 we have been keeping a shared journal that we call the Lewy Read more