Ch.33. Pat Tells Our Book Club Members She Has Lewy Body.
Pat and I first addressed the question of whom to tell you have Lewy Body in Ch.7. We discussed the concepts of acceptance, shame, embarrassment and trust. Here is a recent example of how Pat handled one particularly interesting situation.
We belong to a small (9 person) book club that meets once a month at the Strum Public Library. This month’s selection was Before We Were Yours, by Lisa Wingate. Two of the central characters are elderly sisters, one of whom has advanced dementia (never labelled as to what type) and one who has been similarly diagnosed but actually is still quite competent. Group members began discussing people they know with dementia. It became evident that only one person there besides us knew Pat had Lewy Body (Pat had told her so a few months before but asked her to keep that knowledge private, and to her credit, she had done so).
Pat took the leap. She mentioned that she had Lewy Body Dementia. The startled response from several people was “What’s That?” It’s amazing how few people, even highly educated and well-informed persons like those in our book club, have never heard of Lewy Body Dementia. But, to be honest, I was one of those people until Pat was diagnosed.
Pat and I took turns talking about Lewy Body. Mostly, we differentiated Lewy Body from Alzheimer’s Disease. But Pat also revealed a little about how this disease has affected her memory, health, self-esteem, and spirit. Everyone there was caring, kind and curious. Afterwards, Pat told me she felt good about telling the group and receiving a positive response. It helped her feel better about herself. I’m sure the opposite would have happened if she had kept silent.
I’ve reviewed in my mind Pat’s functioning in the book club. I don’t think she’s ever said or done anything that would appear dysfunctional. Instead, her comments have often been thoughtful and insightful. It doesn’t hurt that she was a literature major in college and grad school. I think anyone observing her at the club might only perceive that her reactions and responses are a little slower than others.
Personally, I’m grateful Pat chose to speak to the group. On one hand it’s a relief not keeping hidden this important part of our life together; on the other hand, her revelation adds to the people we know care about and support us.
Pat’s comments on Pat Tells Our Book Club Members She Has Lewy Body.
I have a belated reaction to what Ron has written here. My belated reaction is that Ron had mentioned Lewy Body Dementia and yet now he is behaving as if what he said is something perfectly normal. He is still saying that I have indicated I have been diagnosed with something called a dementia. I doubt that people understand what a dementia is. Having a dementia means that that person may or may not think of themselves as being demented and yet still have quite complicated reactions to people who think they have dementia or are demented. It seems we have to discuss what it means to have a dementia and what it means to be demented.
Frankly, I recognize that I have certain limitations that do not leave me to apply the word “demented” to myself unless I am doing something specific that leads me to think I am acting in some very odd way. When I talk about Lewy Body and when I discuss changes in my perception of life that relate to having Lewy Body, I do not experience myself as behaving in a demented manner. My experience tells me that other people think differently, and I wish they would become more precise. They might say “Oh, sure, you have a dementia” but they do not talk about how that dementia works, or sounds, or how I sound different because I am “demented” and affected by dementia.
Dementia or demented is not something about who I am.
I don’t believe that I hardly ever sound demented in the sense that I am saying things other people can’t or won’t understand. I do believe that because they can say “Oh, she’s got dementia” that gives them a lot of right to look at what’s wrong in what I’m saying. It’s a label; it’s not a respectable label and I don’t own it unless I am specifically behaving in a way that people say is not understandable.