Ch.115 Year End Review: A Lewy Body Year of Transition           Dec. 31, 2021. [Note: I've jumped ahead about six blog chapters to share this essay at Read more

Ch.114 Pat has Two Almost Pain Free Hours and Ron Begins to Relax           November 2021           Diane, the nurse at The Refuge, told Read more

Ch. 113 Pat Tells Me How Each Rock (and Person) is Special           My daughter Cindy had a great idea: bring Pat a small box filled with Read more

Ch. 112 Pat Thinks Better Then She Can Speak           October 2021           Pat and I used to talk about politics for hours. We Read more

Ch.111 Pat and I have a Serious Conversation about Death and Loneliness October 2021           “I will be gone…gone.”           Pat was in a somber Read more

Ch.110 A Simple Gesture of Respect           September 2021           Last night I brought our Collie Levi to The Refuge. Before we in, though, Read more

Ch.109 Pat Begins Taking a Strong Pain Reliever           September 2021           Pat has been in significant pain for a long time; she has Read more

Ch.108 I’m Here at The Refuge, Aren’t I, to Stay.           September 2021           This morning I came to The Refuge memory care facility Read more

Ch.107 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 Read more

Ch.106 Tears of Love           Sept. 2021           I thought Pat was sleeping when Dan, her Home Health nurse, and I began talking about Read more

Ch.105 Here’s What We’ve Been Avoiding Telling You           Late August, 2021           Elizabeth Acevedo is the author of a tremendous novel written in Read more

Ch.104 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 Read more

Ch. 103 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 Read more

Ch.102  Pat Reads Nancy Drew to Ron           Aug. 2021           Finding things to do together has become challenging now that Pat has begun Read more

Ch.101 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 Read more

Ch.100 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 Read more

Ch.99 Why Now? Pat has a Flare Up of her Auto-Immune Disease           July 2021.           Pat endured the first attack of bullous pemphigoid Read more

Ch.98 Pat is Transferred to a Rehab Center            July 9, 2021           Pat has finally been transferred to a rehab center, a nursing home Read more

Ch.97 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, Read more

Ch.96 Pat Tells Me How She is Growing           June 2021.           Today I took Pat for a wheelchair walk from Peaceful Life assisted Read more

Ch.95 The Transition to Assisted Living was Going Well – Until the Fire Alarm Went Off              June 13, 2021           Pat has been Read more

Ch.94 Twenty-Four Hours of Chaos           June 8, 2021           10:00 A.M.  Pat and I cuddle quietly in bed. Everything seems ok. A time Read more

Ch.93 We’re Ready to Accept Help.           June 2021           Pat came home today. She’s only partially recovered from her urinary tract infection, though, Read more

Ch.92 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, Read more

Ch.91 Pat Eats Little but Seems Unconcerned           May 2021           One-half piece of cake; four apple slices; about six bites of pork stir Read more

Ch.90 Ron and Don Discuss their Roles with their Wives           May 2021           One of the Greek philosophers thought that humans could be Read more

Ch.89 Ron Reminds Pat of her Accomplishments           May, 2021.           Pat and I were chatting this morning when I mentioned that her contributions Read more

Ch.88 Pat Outwits a Would-be Seducer           April 2021           It’s evening and Pat and I are having a nice talk. “I want to Read more

Ch.87 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 Read more

Ch86 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 Read more

Ch.85 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. Read more

Ch.84 Pat and I Go Shopping Together for the First Time in a Year           March, 2021           Pat and I have finally been Read more

Ch.83 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 Read more

Ch.82 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. Read more

Ch.81 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 Read more

Ch.80 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 Read more

Ch.79 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, Read more

Ch.78 Being Lost is Not a Great Experience           February 2021.           Do you remember the opening scene of On Golden Pond, during which Henry Read more

Ch. 77  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 Read more

Ch.76  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. Read more

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