Alzheimer's disease · Caregiver · Writing

What am I doing? / March 22, 2006

Is this okay to do? Write publicly about my mother’s difficulties? I’m doing it primarily for myself, in all honesty. Writing this gives the enormous, unwieldy, raggedy struggle some focus. Putting the broken bits back together at the end of the day helps me. I am forced to look for the poetry in this cruel illness. Reflection, then writing, give me the courage to go to sleep.

They also help me as I learn to keep my own counsel. I’m discovering that the deeper into the caregiver’s world I go, the tougher I have to be. I have professionals telling me that I CANNOT leave my mother alone if the least bit of safety is compromised. Well, what does that mean? I must work, and I believe that she should stay in her home for as long as possible. This isn’t a choice everyone can make–I don’t have a husband or children to take care of, so I can do it. I know the day will come when I will no longer be able to handle the caregiving myself, but I’m in a psychological foxhole right now. I peep out at the future, just long enough to get a broad view, then pull back into the trench. It’s the only way I can soldier on. I set my priorities and tuck them away–non-negotiable, right now. You’re telling me I’ve got to move her to assisted living right now? Take a hike.

I wonder how Alzheimer’s will be for Baby Boomers to handle? My mother’s generation is not as comfortable with self-examination as we are. They don’t, as a rule, question authority. My mother is the daughter of a tough Irish immigrant who came to this country as a teenager (without his parents) and worked. There were no eccentricities or luxuries–he did what he had to do, even if it meant two fulltime jobs. My mother always did what she had to do, too, but I think WW2 was her generation’s crucible. The nation buckled down, but it also learned how to have some fun for the war effort. She loved to dance at the canteens and write letters to as many servicemen as she could. Her generation handles illness and death with a mixture of tough hides and euphemisms. Oddly enough, I find myself dealing this way with her illness. As much as I wish she could sit down with me and discuss the Alzheimer’s and all its implications, sometimes it’s better to use the code words. I have a dear friend who tells me: It’s not going to get any better. Sometimes this irritates me, not because I think it’s false (I don’t), but because–well, what is the point of the brutal honesty? Aren’t I allowed to throw my own light on this situation? Is it going to kill me or harm my mother if I use a euphemism here and there?

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