This week's Lewy Body Dialogue Chapter

Ch.100 Disheartening Morning; Somber Afternoon; Beautiful Evening

July 2021

Disheartening Morning. Pat is back at Peaceful Life Assisted Living. Today she was scheduled to receive an evaluation for physical therapy from her previous provider. Unfortunately, Pat was extremely weak today; she also was not tracking well or able to follow commands. The evaluators did schedule Pat for twice weekly physical therapy sessions, but they told me that people with Pat’s current level of disability may not be able to improve enough to go home safely. They didn’t say never, so I am holding onto hope. But realistically I knew I needed to find a pathway to accept this unanticipated situation.

Somber afternoon. I did find a path this afternoon. It went through grief. I called my brother Don and cried. I talked about what it feels like to be alone in our house; I’m not exactly lonely, since I am spending about 6-7 hours every day with Pat, but when I am home, I have an uncomfortable feeling that something is missing, a sense of incompleteness. Still, by the end of our conversation, and then a little later after a talk with my daughter Cindy, I was less tearful. I felt like I was ready to go on with life.

Beautiful Evening. I spent this evening with Pat. I found her shaking with cold in the dining hall and rushed to bring Pat’s weighted blanket to her. Then we went for a wheelchair walk and admired the tall trees in the neighborhood; we both felt small in their presence. After that I helped Pat eat her first meal of the day: a banana, blueberries, and a piece of white cake with vanilla frosting. And finally, we cuddled and kissed in her small bed, murmuring “I love you” to each other.

          Now, I am alone again, wondering about an awful day that turned wonderful. A Lewy Body day, yes, in its fluctuations, but perhaps the most demanding Lewy Body day we’ve experienced together. 

 Pat’s comments on Disheartening Morning; Somber Afternoon; Beautiful Evening:  My thought is that this is a difficult change for me – a mixed up way of finding out where we are supposed to be.

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