This Weeks Early Stage Lewy Body Dialogue Chapter

         The "Early Stage" mentioned here represents the first 50 plus chapters of the Lewy Body Dialogue blog. 

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 did as she has progressed into the later stages of Lewy Body, please go to  the page entitled  "This Week's Later Stage Lewy Body Dialogue Chapter."  

Pat passed away on July 1, 2022. Ron has now begun a new series entitled "Living Alone After Lewy Body."  You may go to that page to read the introduction and new chapters as they are written. 

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.

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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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