Ch.137 Pat Was Diagnosed with Lewy Body Dementia Exactly Four Years Ago Today
April 12, 2022
This day marks the fourth-year anniversary of the day Pat was formally diagnosed with Lewy Body Dementia by Dr. Donn Dexter at Mayo Clinic in Eau Claire, WI. I began today by rereading the first several chapters of our Lewy Body Dialogue book (which reprints the original 56 chapters of the blog). Some topics covered in these chapters include hallucinations, noise, good days, the need for support, “showtime,” “some days you want to cry,” and my being a “helicopter husband.” Most of these topics are still relevant although Pat doesn’t seem to hallucinate any longer.
Our lives have changed a lot during these four years. When we began Pat was still living at home; we took daily country drives; I was solely responsible for Pat’s care and safety; we could drive 85 miles to St. Paul to attend a couples support group. Now Pat resides at The Refuge memory care center, and I drive those 85 miles visiting her twice a day.
The greatest change I noticed, though, is in the length of Pat’s responses. For example, Pat’s first comment (on hallucinations) was over one page, which she typed herself. But gradually Pat’s comments became shorter, so that her response to Ch. 56, “Ending on a Positive Note,” was only five lines. And, more recently, Pat’s comments have become quite short, sometimes consisting only of a “yes” or “no” response to a question I’d ask. Lewy Body has gradually deprived Pat of some of her ability to create longer (and more abstract) comments.
I feel sad, of course, about this decline. On the other hand, I am grateful that Pat can still understand at least some of what I write even if she cannot reply as fluidly as before. I know she understands because she listens attentively, smiles at appropriate moments, and occasionally adds a comment or two as I read out loud. I still have a working partner on the blog.
We are blessed in that we still get to see each other twice a day. True, contact now is more through holding hands than talking and more through my helping Pat eat her meals than us eating together. But we remain care partners in life, supporting each other in all the ways we can. And that is enough.
Pat’s comments on Pat Was Diagnosed with Lewy Body Dementia Exactly Four Years Ago Today
Ron to Pat: “Honey, it’s been four years since you were first diagnosed with Lewy Body.”
Pat: Looks up at the sky, sighs, seems sad, says nothing.