Ch. 6. Some Days You Just Want to Cry.
Today was one of those days when everything we did was interfered with by Lewy Body. Christmas shopping became a confused muddle as Pat tried to find a small sized woman’s sweatshirt in a store that seemed to have every item of clothing except a small sized woman’s sweatshirt. Then we met an old friend who immediately stated that his wife had Alzheimer’s disease. Pat of course told him about her condition only to feel that she couldn’t get away from her diagnosis even in a department store. So, then we tried to have coffee at a bagel shop, but their latte machine kept screaming so insistently we had to leave (See the chapter on noise).
Where are denial and minimization when you most need them? It is hard, maybe too hard, to face the reality of Lewy Body head on like we did today. Pat put it perfectly: “I can’t get away from it. Everything I do is screwed up. I feel screwed up.”
All we could do was to drive home and head to bed. Naptime. Hoping that when we awakened Lewy Body would still be sleeping, at least for a while. But even that didn’t help much. Pat was up in the middle of the night with vivid hallucinations about gardening with her students. She seemed to realize something was wrong, though, because she talked out loud about how she was “disintegrating.” That term captures her experience, at least as far as I can tell from the outside: when Lewy Body strikes Pat’s mind she cannot integrate what she sees and hears into a coherent picture. Her hallucinations and delusional beliefs partly fill in the mental voids, I think. They provide immediate relief from confusion and chaos. But hallucinations and delusions aren’t real. Eventually they break down in the face of reality – and that’s when Pat’s mind “disintegrates.”
I want to add that normally I take pride in directly facing difficult situations. So does Pat. Also, normally one of us can comfort the other if trouble sets in. But not yesterday or today. Today there was no comfort or relief. Lewy Body was in charge.
Some Days You Just Want to Cry from Pat’s perspective.
[Pat to Ron]: “I can’t get away from it. Everything I do is screwed up. I feel screwed up.”
What now? Most often this kind of feeling comes when I can do nothing to change a given situation and I am sure that I have done something wrong. Sometimes that’s true—others, I just am sure I’ve blown it, and try to cry myself quietly to sleep. I try to believe what Ron says when he’s not mad at me. That helps me.
Sometimes I just go to bed and sleep—or try to.
The hardest times are when I know I’ve got something wrong done, and a hallucination takes over. Those hallucinations scare the heck out of me. Like one hallucination in which I was sure Ron had harmed himself.
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