Friday, May 9, 2008

Writing about life with Alzheimer's

Mom is keeping what she calls a journal of her symptoms. She's writing about what it feels like to have Alzheimer's. I'm glad she's still writing and reading, even though both are hard for her.

She struggles with spelling and also, as she wrote in the diary, with the "nooances" of what she reads. That's the amazing paradox of this disease--that she can still understand the idea of nuances, even though she's losing the capacity to capture them and to spell the word.

When I was with her the other night and she was emailing a friend, she asked me how to spell "Lois," "once" and "couldn't." This from woman who has written (and published) books. She knows when she has spelled something wrong, but she doesn't know how to fix it. It gets very frustrating for her, but we both try not to dwell on the surreal quality and sadness of what can't be healed.

We went out to dinner the other night she told me that the last thing a person says before a pause in discussion echoes over and over in her mind. I told her that I'd better make sure the last thing I say to her is always something nice, like "Mom, you look so thin!" or "Mom, I love you."

Alzheimer's manifests differently in different people. "Forgetting" isn't just about forgetting events; it can involve forgetting how to function, how to achieve operational tasks, like how to spell a word or how to--as happened to Mom the other day--open a car door. These things are like burps in cognition, things that are almost indetectable for people who aren't looking closely or who don't know her very well.

Mom lives in an assisted living community where every day she is involved in numerous activities, such as walking, excercise classes, outings, movies, communal meals. She loves to laugh. She enjoys being with her daughters, grandkids, other family and friends. She likes to keep an eagle eye out for problems at the place where she lives; she keeps a list that she shares at the resident's council meeting. Before this, I'd thought of Alzheimer's Disease as a death sentence. It's not, really. People can still have a good quality of life even as their brains change. Many people are living with Alzheimer's Disease, not just dying from it. That is the "last stage"--but there's a lot of life to live before that happens.

The fact is, Mom is a very bright, educated person. She can "cover" or "cope" very well--and so what I see when I'm with her, I know, is just a little bit of what it feels like to be inside her mind. That's why I'm glad she's getting it all down, as best as she can, in the journal. She told me I can do whatever I like with her journal. She likes the idea of my sharing the story from both of our perspectives. She has always been a supporter of my writing. And I of hers.
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