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Article Excerpt
I have put off writing this for some time, largely because it was too painful for me to write about my parents, and largely, too, because I was worried that my experience--which is purely that, my experience--might cause others undue consternation. In all honesty, the first reason is the most telling: Alzheimer's disease is a horrendous ailment--it takes someone away, before the body is gone, and it diminishes that person in very small but codifiable ways. First, the loved one loses some of her vocabulary or seems stuck in the interstices of life, as if the film of one's daily happenings were cut, and one was living in a few frames, with the rest of the narrative unfolding in the next theater, which, somehow, one can readily see. For a powerful second, the two theatres are showing the same frame, but then things devolve, the correspondences unhinge, and both theatres grow shadowy--the film is still playing, there's even a show of delight on the loved one's face, but it is a private, peculiar delight, as hard to imagine as the joy of a snake cut in halves, its two severed pieces struggling for a rapprochement.
The disease, most centrally, is about loss and love, both so tightly entwined, that I am reminded of a wonderful Chinese painting of a brilliant long-stemmed lily that I confronted a few years ago at the Johnson Art Museum at Cornell. Initially, the overwhelming flower seemed merely vibrant, resplendent, and triumphant. Its color was vital; its presence, incontestable. But then if one was attentive, one noticed a slight sliver of decay, like a small finger, at the bottom of the stem--one realized, that is, that beauty and destruction share the same root, that one undergirds the other. Alzheimer's sadly, God knows, presents the decimation and even, at times, the possibility of a flower; but there is no balance, no artifice. There is no suitable metaphor.
Still, this is a far too romantic vision of Alzheimer's, though it does convey some of my experience, even as it suggests how I was able to cope with it, putting to good use my literary skills. My father and mother both died of Alzheimer's, and both of them, in different ways, confronted the disease. My mother succumbed first. Indeed, my mother was a perfect Alzheimer's patient, if one can say that, since she presented all the neurological signs of the illness. At the time of my mother's diagnosis in the 1980s, the disease could be confirmed only by an autopsy, which, of course, was of little help. There were, however, six warning signs--one was if the patient obsessively turned her thumbs in a counter-clockwise motion, another was if the patient splayed her feet outward, as if chronically pigeon-toed. As we used to joke, of the six indices, my mother exhibited seven. And please understand how important macabre humor became for my family, and for others with the illness, too. Before the disease we used to laugh a great deal: it was lifeblood to us; after the disease, we laughed less, but we still found moments of utter hilarity. When your father, who was usually a bit tight with money, suddenly throws all of his twenties out the window--which happened to a friend of mine--what else are you to do?
If this seems rather clinical, I am writing this after ten years. When my mother first entered the nursing home, after we had exhausted every in-home possibility, she was her usual elegant self. My mother was quite beautiful--she had lovely hair, an olive complexion, and was quite svelte for someone in her eighties. In her earlier years she had a 50s-movie-star figure--"full-figured" was the term then, I believe. In those days, my mother loved doughnuts and pies; she always had a sweet tooth, and I recall how she would always pester me to get her a jelly doughnut, especially if it came right out of the baker's oven. Her new slim weight was largely a response to the disease, and one could see her ribs, poking out like small tubers. She wouldn't eat, or she would forget to eat; and when she was told to eat, because she needed the caloric content, she couldn't understand the concept.
Interestingly, in temperament, my mother remained largely the person she had been throughout the ravages of the disease. When someone came to visit, she would immediately tell her how beautiful she looked and how happy she was that she had come to see her. This was her characteristic gentility--she had been born in Boston, she had attended the famous Boston Girl's Latin School, and she was, in truth, a Black Boston aristocrat. Where she evidenced a profound departure from her strict Yankee upbringing was in her love for outlandish clothes and color, which corresponded, ultimately, to her not small success as a painter. My mother would wear wild green pants and always wanted her husband and children to jazz up their sedate clothing palette--something that my father often did, God knows, to alarming effect. In her artwork, there was always a rhapsody of invention, involving boisterous, even hysterical colors that would have astonished Hieronymus Bosch. If she was reserved in manner, her inner soul was irrepressible.
With her wonderful manners, my mother also evolved incredible coping skills. As she realized that her faculties were diminishing, she employed a brilliant ruse to keep up pretenses. When I came to visit her one day, I asked her, rather self-servingly, if she knew what my name was. Now, this is a question that almost all Alzheimer's family members employ as an essential calculus: if the loved ones remember your name, they are still present; they still share a reality to which you can attest. But this, sadly, involves a misspent logic. Why is your mother's inability to recall your name any more horrific than her inability to paint any longer? Or to open a carton of milk? It is all a great rupture from the previous: the person you knew before is not the person confronting you now. And yet all of us create these portentous...
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