than it does a one-year-old. We sat by the fireplace and, out of unthinking, wretched habit, took pictures of a man who, if he knew nothing else, seemed full of unhappy knowledge of how dismal a subject for photographs he was. The images are awful to me now: my father listing in his wheelchair like an unstrung marionette, eyes mad and staring, mouth sagging, glasses smeared with strobe light and nearly falling off his nose; my mother’s face a mask of reasonably well-contained despair; and my wife and I flashing grotesquely strained smiles as we reach to touch my father. At the dinner table my mother spread a bath towel over my father and cut his turkey into little bites. She kept asking him if he was happy to be having Thanksgiving dinner at home. He responded with silence, shifting eyes, sometimes a faint shrug. My brothers called to wish him a happy holiday; and here, out of the blue, he mustered a smile and a hearty voice, he was able to answer simple questions, he thanked them both for calling.
This much of the evening was typically Alzheimer’s. Because children learn social skills very early, a capacity for gestures of courtesy and phrases of vague graciousness survives in many Alzheimer’s patients long after their memories are shot. It wasn’t so remarkable that my father was able to handle (sort of) my brothers’ holiday calls. But consider what happened next, after dinner, outside the nursing home. While my wife ran inside for a geri chair, my father sat beside me and studied the institutional portal that he was about to reenter. “Better not to leave,” he told me in a clear, strong voice, “than to have to come back.” This was not a vague phrase; it pertained directly to the situation at hand, and it strongly suggested an awareness of his larger plight and his connection to the past and future. He was requesting that he be spared the pain of being dragged back toward consciousness and memory. And, sure enough, on the morning after Thanksgiving, and for the remainder of our visit, he was as crazy as I ever saw him, his words a hash of random syllables, his body a big flail of agitation.
For David Shenk, the most important of the “windows onto meaning” afforded by Alzheimer’s is its slowing down of death. Shenk likens the disease to a prism that refracts death into a spectrum of its otherwise tightly conjoined parts—death of autonomy, death of memory, death of self-consciousness, death of personality, death of body—and he subscribes to the most common trope of Alzheimer’s: that its particular sadness and horror stem from the sufferer’s loss of his or her “self” long before the body dies.
This seems mostly right to me. By the time my father’s heart stopped, I’d been mourning him for years. And yet, when I consider his story, I wonder whether the various deaths can ever really be so separated, and whether memory and consciousness have such secure title, after all, to the seat of selfhood. I can’t stop looking for meaning in the two years that followed his loss of his supposed “self,” and I can’t stop finding it.
I’m struck, above all, by the apparent persistence of his will . I’m powerless not to believe that he was exerting some bodily remnant of his self-discipline, some reserve of strength in the sinews beneath both consciousness and memory, when he pulled himself together for the request he made to me outside the nursing home. I’m powerless as well not to believe that his crash on the following morning, like his crash on his first night alone in a hospital, amounted to a relinquishment of that will, a letting-go, an embrace of madness in the face of unbearable emotion. Although we can fix the starting point of his decline (full consciousness and sanity) and the end point (oblivion and death), his brain wasn’t simply a computational device running gradually and inexorably amok. Where the subtractive progress of Alzheimer’s might predict a steady downward trend