• Blog >
  • Ch.115 Year End Review: A Lewy Body Year of Transition
RSS Feed

Ch.115 Year End Review: A Lewy Body Year of Transition

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 the beginning of the year. We will return to late 2021 next week.]

          I’ve just reread the essay I wrote at the end of 2020 (Ch.80). I was hoping for a miracle, some magic pill that would both stop Lewy Body and return Pat to full functioning. I guess the beginning of a new year is a good time to fantasize. No magic elixir appeared, unfortunately, and Lewy Body continued its attack on Pat’s thoughts, emotions, movement, and physical health.

          Here’s one example: Pat and I took our country drives through the beautiful Wisconsin hills almost every day during the first half of the year. However, they gradually became briefer as Pat’s pain increased. Slowly, almost imperceptibly, Pat was weakening. Neither of us realized that her physical distress might be caused by her first urinary tract infection. By the time we did understand what was occurring Pat was in the hospital and then a rehab facility. Just when she was looking like she would recover (her physical therapist said “You’ll be walking and going home in a couple weeks”) Pat suffered two more uti’s, resulting in physical incapacitation, which continues into the present. Unable to support her weight, by June Pat was residing in an assisted living center and by September at The Refuge, a memory care center. She has also journeyed through home health care, palliative care, and now hospice services.

          Lewy Body, however, is capricious in its progression. Last night Pat suddenly began reading the captions from a Birds and Blooms magazine. Pat spoke perfectly and she clearly understood what she read. Equally important, Pat displayed a level of interest and enthusiasm for the written word that I haven’t observed lately. Pat was full of life and for that half hour as we read together Lewy Body was just a background figure.

          Pat and I now spend about five hours together every day, in two segments: 11 a.m. – 2 p.m. and 6 p.m. – 8 p.m. The first period revolves around lunch time; I’m glad to report that Pat eats well at The Refuge and has pretty much retained her weight over the last half year. The evening period is for us alone in Pat’s room. That’s our time to hold hands, share feelings of love, and support each other emotionally (Pat often is the support person, propping me up at times when I feel lonely or lost). We don’t try to hide from reality, though. We acknowledge the fact that it’s tough on both of us that we cannot live together.

          Here is what has surprised me about this transition year: I believe that right now Pat and I are closer than we have ever been. Why? Because when we are together, especially when we are alone in her room, there are no distractions. We come together for only one purpose, to share our deepest love for each other. I’m not watching football; Pat’s not involved in one of her projects; the cat’s not meowing (all right, our collie Levi is in the room, but he stays quiet, content to lay nearby); no attendant is trying to convince Pat to take her medicines. We are present with and for each other.

          We cannot know what Lewy Body will do in 2022. My hope is that it will slow its progression so we can continue to share our new life. I am certain, however, that Pat and I will treasure every day, together.

 Pat’s comments on Year End Review: A Lewy Body Year of Transition

          Pat (pointing): What I think I hope for is that I can have my feet in that chair and I don’t know if I can [get strong enough to get out of her wheelchair and sit in a normal chair].