Ch.23. 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 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.