How to Be Alone (3 page)

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 a 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.