Ch.250 Lewy Body Dialogue Talk

May 2024 

Yesterday my friend Sue, whose husband died from Lewy Body Dementia just over two years ago, and I co-presented a talk on Lewy Body for an audience of about 40 members of the Chippewa Valley Learning in Retirement Society. Sue and I discussed our personal experiences, presented information about Lewy Body utilizing power point slides, and read selections from the early chapters of this blog: “Noise,” “Syncope,” etc. Sue spoke Pat’s part of these chapters as well as relating the topics to her and Jim’s life. She did a great job for which I am thankful.

I could tell the discussion was going well because the audience members sat quietly, nobody pulled out a cell phone, and there were hardly any inpatient squirming movements. We spoke for 1 ¼ hours and took questions for 15 minutes. I teared up twice, once when I remembered getting a call from the memory care nurse telling me to come soon (because Pat was beginning to die) and once when, when asked if I knew my name, Pat called me her “big squeeze.” I don’t think Sue became tearful, although I did notice a couple of slightly long pauses.

This morning, I’m feeling a little blue. I’d been looking ahead to this talk for months: selecting readings, creating power points, rehearsing, getting both anxious and excited. And now it’s done. I doubt I’ll ever do anything like this again. This experience will now be placed in the memory channels of my brain, to be slowly forgotten detail by detail.

On the other hand, giving this talk only once fits in with my path toward ending my career as a widower and just living my life. Pat doesn’t need me any longer to watch over her and I don’t need to be her advocate. And I do feel good that at least a few people have learned about Lewy Body Dementia and how it affects a couple’s life.

I’m meeting with Sue in a few days to discuss our shared adventure. I’m guessing I’ll feel happier then, once this temporary malaise lifts.