There ensued some months of relative optimism. The cancer was eradicated, my mother’s knee finally improved, and her native hopefulness returned to her letters. She reported that my father had taken first place in a game of bridge: “With his confusion cleared up & his less conservative approach to the game he is doing remarkably well & it’s about the only thing he enjoys (& can stay awake for!).” But my father’s anxiety about his health did not abate; he had stomach pains that he was convinced were caused by cancer. Gradually, the import of the story my mother was telling me migrated from the personal and the moral toward the psychiatric. “The past six months we have lost so many friends it is very unsettling—part of Dad’s nervousness & depression I’m sure,” she wrote in February 1992. The letter continued:
Dad’s internist, Dr. Rouse, has about concluded what I have felt all a long regarding Dad’s stomach discomfort (he’s ruled out all clinical possibilities). Dad is (1) terribly nervous, (2) terribly depressed & I hope Dr. Rouse will put him on an anti-depressant. I know there has to be help for this … There have been disturbing, distressing things in our lives the past year, I know that very well, but Dad’s mental condition is hurting him physically & if he won’t go for counseling (suggested by Dr. Weiss) perhaps he now will accept pills or whatever it takes for nervousness & depression.
For a while, the phrase “nervousness & depression” was a fixture of her letters. Prozac briefly seemed to lift my father’s spirits, but the effects were short-lived. Finally, in July 1992, to my surprise, he agreed to see a psychiatrist.
My father had always been supremely suspicious of psychiatry. He viewed therapy as an invasion of privacy, mental health as a matter of self-discipline, and my mother’s increasingly pointed suggestions that he “talk to someone” as acts of aggression—little lobbed grenades of blame for their unhappiness as a couple. It was a measure of his desperation that he voluntarily set foot in a psychiatrist’s office.
In October, when I stopped in St. Louis on my way to Italy, I asked him about his sessions with the doctor. He made a hopeless gesture with his hands. “He’s extremely able,” he said. “But I’m afraid he’s written me off.”
The idea of anybody writing my father off was more than I could stand. From Italy I sent the psychiatrist a three-page appeal for reconsideration, but even as I was writing it the roof was caving in at home. “Much as I dislike telling you,” my mother wrote in a letter faxed to Italy, “Dad has regressed terribly. Medicine for the urinary problem a urologist is treating in combination with medication for depression and nervousness blew his mind again and the hallucinating, etc. was terrible.” There had been a weekend with my Uncle Erv in Indiana, where my father, removed from his familiar surroundings, unleashed a night of madness that culminated in my uncle’s shouting into his face, “Earl, my God, it’s your brother, Erv, we slept in the same bed!” Back in St. Louis, my father had begun to rage against the retired lady, Mrs. Pryble, whom my mother had engaged to sit with him two mornings a week while she ran errands. He didn’t see why he needed sitting, and, even assuming that he did need sitting, he didn’t see why a stranger, rather than his wife, should be doing it. He’d become a classic “sundowner,” dozing through the day and rampaging in the wee hours.
There followed a dismal holiday visit during which my wife and I finally intervened on my mother’s behalf and put her in touch with a geriatric social worker, and my mother urged my wife and me to tire my father out so that he would sleep through the night without psychotic incident, and my father sat stone-faced by the fireplace or told grim stories of his childhood while my mother fretted about the expense, the prohibitive expense, of sessions with a social worker. But even then, as far as I can remember, nobody ever said “dementia.” In all my mother’s letters to me, the word “Alzheimer’s” appears exactly once, in reference to an old German woman I worked for as a teenager.
I REMEMBER my suspicion and annoyance, fifteen years ago, when the term “Alzheimer’s disease” was first achieving currency. It seemed to me another instance of the medicalization of human experience, the latest entry in the ever-expanding nomenclature of victimhood. To my mother’s news about my old employer I replied: “What you describe sounds like the same old Erika, only quite a bit worse, and that’s not how Alzheimer’s is supposed to work, is it? I spend a few minutes every month fretting about ordinary mental illness being trendily misdiagnosed as Alzheimer’s.”
From my current vantage, where I spend a few minutes every month fretting about what a self-righteous thirty-year-old I was, I can see my reluctance to apply the term “Alzheimer’s” to my father as a way of protecting the specificity of Earl Franzen from the generality of a nameable condition. Conditions have symptoms; symptoms point to the organic basis of everything we are. They point to the brain as meat. And, where I ought to recognize that, yes, the brain is meat, I seem instead to maintain a blind spot across which I then interpolate stories that emphasize the more soul-like aspects of the self. Seeing my afflicted father as a set of organic symptoms would invite me to understand the healthy Earl Franzen (and the healthy me) in symptomatic terms as well—to reduce our beloved personalities to finite sets of neurochemical coordinates. Who wants a story of life like that?
Even now, I feel uneasy when I gather facts about Alzheimer’s. Reading, for example, David Shenk’s book The Forgetting: Alzheimer’s: Portrait of an Epidemic, I’m reminded that when my father got lost in his own neighborhood, or forgot to flush the toilet, he was exhibiting symptoms identical to those of millions of other afflicted people. There can be comfort in having company like this, but I’m sorry to see the personal significance drained from certain mistakes of my father’s, like his confusion of my mother with her mother, which struck me at the time as singular and orphic, and from which I gleaned all manner of important new insights into my parents’ marriage. My sense of private selfhood turns out to have been illusory.
Senile dementia has been around for as long as people have had the means of recording it. While the average human life span remained short and old age was a comparative rarity, senility was considered a natural by-product of aging—perhaps the result of sclerotic cerebral arteries. The young German neuropathologist Alois Alzheimer believed he was witnessing an entirely new variety of mental illness when, in 1901, he admitted to his clinic a fifty-one-year-old woman, Auguste D., who was suffering from bizarre mood swings and severe memory loss and who, in Alzheimer’s initial examination of her, gave problematic answers to his questions:
“What is your name?”
“Auguste.”
“Last name?”
“Auguste.”
“What is your husband’s name?”
“Auguste, I think.”
When Auguste D. died in an institution, four years later, Alzheimer availed himself of recent advances in microscopy and tissue-staining and was able to discern, in slides of her brain tissue, the striking dual pathology of her disease: countless sticky-looking globs of “plaque” and countless neurons engulfed by “tangles” of neuronal fibrils. Alzheimer’s findings greatly interested his patron Emil Kraepelin, then the dean of German psychiatry, who was engaged in a fierce scientific battle with Sigmund Freud and Freud’s psycholiterary theories of mental illness. To Kraepelin, Alzheimer’s plaques and tangles provided welcome clinical support for his contention that mental illness was fundamentally organic. In his Handbook of Psychiatry he dubbed Auguste D.’s condition Morbus Alzheimer.
For six decades after Alois Alzheimer’s autopsy of Auguste D., even as breakthroughs in disease prevention and treatment were adding fifteen years to life expectancy in developed nations, Alzheimer’s continued to be viewed as a medical rarity à la Huntington’s disease. David Shenk tells the story of an American neuropathologist named Meta Naumann who, in the early fifties, autopsied the brains of 210 victims of senile dementia and found sclerotic arteries in few of them, plaques and tangles in the majority. Here was ironclad evidence that Alzheimer’s was far more common than anyone had guessed; but Naumann’s work appears to have persuaded no one. “They felt that Meta was talking nonsense,” her husband recalled.
The scientific community simply wasn’t ready to consider that senile dementia might be more than a natural consequence of aging. In the early fifties there was no self-conscious category of “seniors,” no explosion of Sun Belt retirement communities, no AARP, no Early Bird tradition at low-end restaurants; and scientific thinking reflected these social realities. Not until the seventies did conditions become ripe for a reinterpretation of senile dementia. By then, as Shenk says, “so many people were living so long that senility didn’t feel so normal or acceptable anymore.” Congress passed the Research on Aging Act in 1974, and established the National Institute on Aging, for which funding soon mushroomed. By the end of the eighties, at the crest of my annoyance with the clinical term and its sudden ubiquity, Alzheimer’s had achieved the same social and medical standing as heart disease or cancer—and had the research funding levels to show for it.
What happened with Alzheimer’s in the seventies and eighties wasn’t simply a diagnostic paradigm shift. The number of new cases really is soaring. As fewer and fewer people drop dead of heart attacks or die of infections, more and more survive to become demented. Alzheimer’s patients in nursing homes live much longer than other patients, at a cost of at least forty thousand dollars annually per patient; until they’re institutionalized, they increasingly derange the lives of family members charged with caring for them. Already, five million Americans have the disease, and the number could rise to fifteen million by 2050.
Because there’s so much money in chronic illness, drug companies are investing feverishly in proprietary Alzheimer’s research while publicly funded scientists file for patents on the side. But because the science of the disease remains cloudy (a functioning brain is not a lot more accessible than the center of the earth or the edge of the universe), nobody can be sure which avenues of research will lead to effective treatments. Overall, the feeling in the field seems to be that if you’re under fifty you can reasonably expect to be offered effective drugs for Alzheimer’s by the time you need them. Then again, twenty years ago, many cancer researchers were predicting a cure within twenty years.
David Shenk, who is comfortably under fifty, makes the case in The Forgetting that a cure for senile dementia might not be an entirely unmitigated blessing. He notes, for example, that one striking peculiarity of the disease is that its “sufferers” often suffer less and less as it progresses. Caring for an Alzheimer’s patient is gruelingly repetitious precisely because the patient himself has lost the cerebral equipment to experience anything as a repetition. Shenk quotes patients who speak of “something delicious in oblivion” and who report an enhancement of their sensory pleasures as they come to dwell in an eternal, pastless Now. If your short-term memory is shot, you don’t remember, when you stoop to smell a rose, that you’ve been stooping to smell the same rose all morning.
As the psychiatrist Barry Reisberg first observed twenty years ago, the decline of an Alzheimer’s patient mirrors in reverse the neurological development of a child. The earliest capacities a child develops—raising the head (at one to three months), smiling (two to four months), sitting up unassisted (six to ten months)—are the last capacities an Alzheimer’s patient loses. Brain development in a growing child is consolidated through a process called myelinization, wherein the axonal connections among neurons are gradually strengthened by sheathings of the fatty substance myelin. Apparently, since the last regions of the child’s brain to mature remain the least myelinated, they’re the regions most vulnerable to the insult of Alzheimer’s. The hippocampus, which processes short-term memories into long-term, is very slow to myelinize. This is why we’re unable to form permanent episodic memories before the age of three or four, and why the hippocampus is where the plaques and tangles of Alzheimer’s first appear. Hence the ghostly apparition of the middle-stage patient who continues to be able to walk and feed herself even as she remembers nothing from hour to hour. The inner child isn’t inner anymore. Neurologically speaking, we’re looking at a one-year-old.
Although Shenk tries valiantly to see a boon in the Alzheimer’s patient’s childish relief from responsibility and childlike focus on the Now, I’m mindful that becoming a baby again was the last thing my father wanted. The stories he told from his childhood in northern Minnesota were mainly (as befits a depressive’s recollections) horrible: brutal father, unfair mother, endless chores, backwoods poverty, family betrayals, hideous accidents. He told me more than once, after his retirement, that his greatest pleasure in life had been going to work as an adult in the company of other men who valued his abilities. My father was an intensely private person, and privacy for him had the connotation of keeping the shameful content of one’s interior life out of public sight. Could there have been a worse disease for him than Alzheimer’s? In its early stages, it worked to dissolve the personal connections that had saved him from the worst of his depressive isolation. In its later stages it robbed him of the sheathing of adulthood, the means to hide the child inside him. I wish he’d had a heart attack instead.
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.
