Still, shaky though Shenk’s arguments for the brighter side of Alzheimer’s may be, his core contention is harder to dismiss: senility is not merely an erasure of meaning but a source of meaning. For my mother, the losses of Alzheimer’s both amplified and reversed long-standing patterns in her marriage. My father had always refused to open himself to her, and now, increasingly, he couldn’t open himself. To my mother, he remained the same Earl Franzen napping in the den and failing to hear. She, paradoxically, was the one who slowly and surely lost her self, living with a man who mistook her for her mother, forgot every fact he’d ever known about her, and finally ceased to speak her name. He, who had always insisted on being the boss in the marriage, the maker of decisions, the adult protector of the childlike wife, now couldn’t help behaving like the child. Now the unseemly outbursts were his, not my mother’s. Now she ferried him around town the way she’d once ferried me and my brothers. Task by task, she took charge of their life. And so, although my father’s “long illness” was a crushing strain and disappointment to her, it was also an opportunity to grow slowly into an autonomy she’d never been allowed: to settle some very old scores.
As for me, once I accepted the scope of the disaster, the sheer duration of Alzheimer’s forced me into unexpectedly welcome closer contact with my mother. I learned, as I might not have otherwise, that I could seriously rely on my brothers and that they could rely on me. And, strangely, although I’d always prized my intelligence and sanity and self-consciousness, I found that watching my father lose all three made me less afraid of losing them myself. I became a little less afraid in general. A bad door opened, and I found I was able to walk through it.
THE DOOR IN QUESTION was on the fourth floor of Barnes Hospital, in St. Louis. About six weeks after my wife and I had put my mother in touch with the social worker and gone back east, my oldest brother and my father’s doctors persuaded him to enter the hospital for testing. The idea was to get all the medications out of his bloodstream and see what we were dealing with underneath. My mother helped him check in and spent the afternoon settling him into his room. He was still his usual, semipresent self when she left for dinner, but that evening, at home, she began to get calls from the hospital, first from my father, who demanded that she come and remove him from “this hotel,” and then from nurses who reported that he’d become belligerent. When she returned to the hospital in the morning, she found him altogether gone—raving mad, profoundly disoriented.
I flew back to St. Louis a week later. My mother took me straight from the airport to the hospital. While she spoke to the nurses, I went to my father’s room and found him in bed, wide awake. I said hello. He made frantic shushing gestures and beckoned me to his pillow. I leaned over him and he asked me, in a husky whisper, to keep my voice down because “they” were “listening.” I asked him who “they” were. He couldn’t tell me, but his eyes rolled fearfully to scan the room, as if he’d lately seen “them” everywhere and were puzzled by “their” disappearance. When my mother appeared in the doorway, he confided to me, in an even lower whisper, “I think they’ve gotten to your mother.”
My memories of the week that followed are mainly a blur, punctuated by a couple of life-changing scenes. I went to the hospital every day and sat with my father for as many hours as I could stand. At no point did he string together two coherent sentences. The memory that appears to me most significant in hindsight is a very peculiar one. It’s lit by a dreamlike indoor twilight, it’s set in a hospital room whose orientation and cramped layout are unfamiliar from any of my other memories, and it returns to me now without any of the chronological markers that usually characterize my memories. I’m not sure it even dates from that first week I saw my father in the hospital. And yet I’m sure that I’m not remembering a dream. All memories, the neuroscientists say, are actually memories of memory, but usually they don’t feel that way. Here’s one that does. I remember remembering: my father in bed, my mother sitting beside it, me standing near the door. We’ve been having an anguished family conversation, possibly about where to move my father after his discharge from the hospital. It’s a conversation that my father, to the slight extent that he can follow it, is hating. Finally he cries out with passionate emphasis, as if he’s had enough of all the nonsense, “I have always loved your mother. Always.” And my mother buries her face in her hands and sobs.
This was the only time I ever heard my father say he loved her. I’m certain the memory is legitimate because the scene seemed to me immensely significant even at the time, and I then described it to my wife and brothers and incorporated it into the story I was telling myself about my parents. In later years, when my mother insisted that my father had never said he loved her, not even once, I asked if she remembered that time in the hospital. I repeated what he’d said, and she shook her head uncertainly. “Maybe,” she said. “Maybe he did. I don’t remember that.”
My brothers and I took turns going to St. Louis every few months. My father never failed to recognize me as someone he was happy to see. His life in a nursing home appeared to be an endless troubled dream populated by figments from his past and by his deformed and brain-damaged fellow inmates; his nurses were less like actors in the dream than like unwelcome intruders on it. Unlike many of the female inmates, who at one moment were wailing like babies and at the next moment glowing with pleasure while someone fed them ice cream, I never saw my father cry, and the pleasure he took in ice cream never ceased to look like an adult’s. He gave me significant nods and wistful smiles as he confided to me fragments of nonsense to which I nodded as if I understood. His most consistently near-coherent theme was his wish to be removed from “this hotel” and his inability to understand why he couldn’t live in a little apartment and let my mother take care of him.
For Thanksgiving that year, my mother and my wife and I checked him out of the nursing home and brought him home with a wheelchair in my Volvo station wagon. He hadn’t been in the house since he’d last been living there, ten months earlier. If my mother had been hoping for a gratifying show of pleasure from him, she was disappointed; by then, a change of venue no more impressed my father 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 like this—
what I saw of my father’s fall looked more like this:
He held himself together longer, I suspect, than it might have seemed he had the neuronal wherewithal to do. Then he collapsed and fell lower than his pathology may have strictly dictated, and he chose to stay low, ninety-nine percent of the time. What he wanted (in the early years, to stay clear; in the later years, to let go) was integral to what he was. And what I want (stories of my father’s brain that are not about meat) is integral to what I choose to remember and retell.
One of the stories I’ve come to tell, then, as I try to forgive myself for my long blindness to his condition, is that he was bent on concealing that condition and, for a remarkably long time, retained the strength of character to bring it off. My mother used to swear that this was so. He couldn’t fool the woman he lived with, no matter how he bullied her, but he could pull himself together as long he had sons in town or guests in the house. The true solution of the conundrum of my stay with him during my mother’s operation probably has less to do with my blindness than with the additional will he was exerting.
After the bad Thanksgiving, when we knew he was never coming home again, I helped my mother sort through his desk. (It’s the kind of liberty you take with the desk of a child or a dead person.) In one of his drawers we found evidence of small, covert endeavors not to forget. There was a sheaf of papers on which he’d written the addresses of his children, one address per slip, the same address on several. On another slip he’d written the birth dates of his older sons—“Bob 1-13-48” and “TOM 10-15-50”—and then, in trying to recall mine (August 17, 1959), he had erased the month and day and made a guess on the basis of my brothers’ dates: “JON 10-13-49.”
Consider, too, what I believe are the last words he ever spoke to me, three months before he died. For a couple of days, I’d been visiting the nursing home for a dutiful ninety minutes and listening to his mutterings about my mother and to his affable speculations about certain tiny objects that he persisted in seeing on the sleeves of his sweater and the knees of his pants. He was no different when I dropped by on my last morning, no different when I wheeled him back to his room and told him I was heading out of town. But then he raised his face toward mine and—again, out of nowhere, his voice was clear and strong—he said: “Thank you for coming. I appreciate your taking the time to see me.”
Set phrases of courtesy? A window on his fundamental self? I seem to have little choice about which version to believe.
IN RELYING ON MY MOTHER’S LETTERS to reconstruct my father’s disintegration, I feel the shadow of the undocumented years after 1992, when she and I talked on the phone at greater length and ceased to write all but the briefest notes. Plato’s description of writing, in the Phaedrus, as a “crutch of memory” seems to me fully accurate: I couldn’t tell a clear story of my father without those letters. But, where Plato laments the decline of the oral tradition and the atrophy of memory which writing induces, I at the other end of the Age of the Written Word am impressed by the sturdiness and reliability of words on paper. My mother’s letters are truer and more complete than my self-absorbed and biased memories; she’s more alive to me in the written phrase “he needs distractions!” than in hours of videotape or stacks of pictures of her.
The will to record indelibly, to set down stories in permanent words, seems to me akin to the conviction that we are larger than our biologies. I wonder if our current cultural susceptibility to the charms of materialism—our increasing willingness to see psychology as chemical, identity as genetic, and behavior as the product of bygone exigencies of human evolution—isn’t intimately related to the postmodern resurgence of the oral and the eclipse of the written: our incessant telephoning, our ephemeral e-mailing, our steadfast devotion to the flickering tube.
Have I mentioned that my father, too, wrote letters? Usually typewritten, usually prefaced with an apology for misspellings, they came much less frequently than my mother’s. One of the last is from December 1987:
This time of the year is always difficult for me. I’m ill at ease with all the gift-giving, as I would love to get things for people but lack the imagination to get the right things. I dread the shopping for things that are the wrong size or the wrong color or something not needed, and anticipate the problems of returning or exchanging. I like to buy tools, but Bob pointed out a problem with this category, when for some occasion I gave him a nice little hammer with good balance, and his comment was that this was the second or third hammer and I don’t need any more, thank you. And then there is the problem of gifts for your mother. She is so sentimental that it hurts me not to get her something nice, but she has access to my checking account with no restrictions. I have told her to buy something for herself, and say it is from me, so she can compete with the after-Christmas comment: “See what I got from my husband!” But she won’t participate in that fraud. So I suffer through the season.
In 1989, as his powers of concentration waned with his growing “nervousness & depression,” my father stopped writing letters altogether. My mother and I were therefore amazed to find, in the same drawer in which he’d left those addresses and birth dates, an unsent letter dated January 22, 1993—unimaginably late, a matter of weeks before his final breakdown. The letter was in an envelope addressed to my nephew Nick, who, at age six, had just begun to write letters himself. Possibly my father was ashamed to send a letter that he knew wasn’t fully coherent; more likely, given the state of his hippocampal health, he simply forgot. The letter, which for me has become an emblem of invisibly heroic exertions of the will, is written in a tiny penciled script that keeps veering away from the horizontal:
Dear Nick,
We got your letter a couple days ago and were pleased to see how well you were doing in school, particularly in math. It is important to write well, as the ability to exchange ideas will govern the use that one country can make of another country’s ideas.
Most of your nearest relatives are good writers, and thereby took the load off me. I should have learned better how to write, but it is so easy to say, Let Mom do it.
I know that my writing will not be easy to read, but I have a problem with the nerves in my legs and tremo
rs in my hands. In looking at what I have written, I expect you will have difficulty to understand, but with a little luck, I may keep up with you.
We have had a change in the weather from cold and wet to dry with fair blue skies. I hope it stays this way. Keep up the good work.
Love, Grandpa
P.S. Thank you for the gifts.
MY FATHER’S HEART and lungs were very strong, and my mother was bracing herself for two or three more years of endgame when, one day in April 1995, he stopped eating. Maybe he was having trouble swallowing, or maybe, with his remaining shreds of will, he’d resolved to put an end to his unwanted second childhood.
His blood pressure was seventy over palpable when I flew into town. Again, my mother took me straight to the nursing home from the airport. I found him curled up on his side under a thin sheet, breathing shallowly, his eyes shut loosely. His muscle had wasted away, but his face was smooth and calm and almost entirely free of wrinkles, and his hands, which had changed not at all, seemed curiously large in comparison to the rest of him. There’s no way to know if he recognized my voice, but within minutes of my arrival his blood pressure climbed to 120/90. I worried then, worry even now, that I made things harder for him by arriving: that he’d reached the point of being ready to die but was ashamed to perform such a private or disappointing act in front of one of his sons.
My mother and I settled into a rhythm of watching and waiting, one of us sleeping while the other sat in vigil. Hour after hour, my father lay unmoving and worked his way toward death; but when he yawned, the yawn was his. And his body, wasted though it was, was likewise still radiantly his. Even as the surviving parts of his self grew ever smaller and more fragmented, I persisted in seeing a whole. I still loved, specifically and individually, the man who was yawning in that bed. And how could I not fashion stories out of that love—stories of a man whose will remained intact enough to avert his face when I tried to clear his mouth out with a moist foam swab? I’ll go to my own grave insisting that my father was determined to die and to die, as best he could, on his own terms.