This morning was my monthly dementia support group. I didn't have any concerns or anything really to talk about this time, but I always get a big lift from being there with people who have gone through it (two of the today had buried their loved ones with Alzheimers) or are going through it. One of the things I picked up today was this moving poem which, I think, says a lot.
Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand.
I'm confused beyond your concept
I am sad and sick and lost
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting,
Can't be different 'though I try.
Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me,
Love me 'til my life is done.
It says so much. I think I'm going to drop it off on the dining room table at her apartment. She'll find it some day and not know who put it there (even if I tell her I'm bringing it to her), but maybe it will help her...a little. It helps me to read it over and over again and try to feel what she is feeling. The line I'm confused beyond your concept in particular gets to me because when I get frustrated it's because I expect her to make connections in a certain way and I have to remember that she can't. Like even though I remind her that if she wants to know what the air is like outside, she just has to move her hand 6" and open the door. Whenever I say that her face has a bland expression on it as if that was the most ridiculous thing in the world for me to suggest, and, of course, she does not do it, but waits for me to give her a weather report.
In this whole process I am getting a different picture of the mother I've always known. I have done some reshuffling around here and have moved some books from my overstuffed office onto the shelves in the living room. It involved moving my mother's diaries. She has kept a diary all of her life, hardbound books that she would record her day in every day. When she left my father, she threw away the books she had kept for 37 years because she didn't want to remember any of it. So what is left is everything from after she left my father.
She wanted to throw those away, but I kept them, with the idea in mind that I would read through them and find out what was really going on with her all these years. But I have found that it is like reading something from a court reporter. Totally devoid of emotion, just recording her day. The diaries stop before Paul died, but David's death gets two pages, because we were with her for two days. Other than saying she can't believe he's gone, it is a clinical description of what happened and because she happened to have guests from Holland staying with her at the time, the next several days (up to the funeral) were filled with the places they went, how she entertained them, what she cooked, etc. It was as if Dave's death was just a blip on her radar.
When I read over these books, I realize that this is what has frustrated me my whole life. She does not relate emotionally to most things. Even before the dementia, I tried to let her know how frustrated I was at always being put second behind her husband's family, about being excluded from family photos at her wedding, about the times I begged her to come and see the kids in performance, but she had something to do with his family, about the holidays when we had to be "fit in" whenever they had a free day,but never ON the holiday. This has consistently washed over her like water over a bridge. It has never once penetrated her brain that I was hurting for so many years at being always "second." When she married I thought it would become a blended family, not a "yours" and "mine" with "yours" taking precedence.
So a lot of what is frustrating to me in her dementia is just an extension of how she has been acting, I guess my whole life. I remember having one emotional conversation with her, many years after my typing teacher Sister Anne died. She broke down in tears and told me how it had hurt her that I preferred to spend time with Sister Anne than with the family. At that time my father made life at home so unpleasant, and Sister Anne was a safe haven, and I had zero notion of how my mother was feeling, because we never discussed feelings in our house. The few times feelings erupted were so disastrous that it made you hide them even deeper.
I don't know if this descent into dementia is a learning experience for her, if she is learning anything about her continuing loss of memory, but trying so hard to be with her and support her and make things easier for her is very definitely a learning experience for me.