Being Mortal / Быть смертным (by Atul Gawande, 2014) - аудиокнига на английском

I see it now—this world is swiftly passing. —the warrior Karna, in the Mahabharata They come to rest at any kerb: All streets in time are visited. —Philip Larkin, “Ambulances” Introduction I learned about a lot of things in medical school, but mortality wasn’t one of them. Although I was given a dry, leathery corpse to dissect in my first term, that was solely a way to learn about human anatomy. Our textbooks had almost nothing on aging or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise. The one time I remember discussing mortality was during an hour we spent on The Death of Ivan Ilyich, Tolstoy’s classic novella. It was in a weekly seminar called Patient-Doctor—part of the school’s effort to make us more rounded and humane physicians. Some weeks we would practice our physical examination etiquette; other weeks we’d learn about the effects of socioeconomics and race on health. And one afternoon we contemplated the suffering of Ivan Ilyich as he lay ill and worsening from some unnamed, untreatable disease. In the story, Ivan Ilyich is forty-five years old, a midlevel Saint Petersburg magistrate whose life revolves mostly around petty concerns of social status. One day, he falls off a stepladder and develops a pain in his side. Instead of abating, the pain gets worse, and he becomes unable to work. Formerly an “intelligent, polished, lively and agreeable man,” he grows depressed and enfeebled. Friends and colleagues avoid him. His wife calls in a series of ever more expensive doctors. None of them can agree on a diagnosis, and the remedies they give him accomplish nothing. For Ilyich, it is all torture, and he simmers and rages at his situation. “What tormented Ivan Ilyich most,” Tolstoy writes, “was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and he only need keep quiet and undergo a treatment and then something very good would result.” Ivan Ilyich has flashes of hope that maybe things will turn around, but as he grows weaker and more emaciated he knows what is happening. He lives in mounting anguish and fear of death. But death is not a subject that his doctors, friends, or family can countenance. That is what causes him his most profound pain. “No one pitied him as he wished to be pitied,” writes Tolstoy. “At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted. He knew he was an important functionary, that he had a beard turning grey, and that therefore what he longed for was impossible, but still he longed for it.” As we medical students saw it, the failure of those around Ivan Ilyich to offer comfort or to acknowledge what is happening to him was a failure of character and culture. The late-nineteenth-century Russia of Tolstoy’s story seemed harsh and almost primitive to us. Just as we believed that modern medicine could probably have cured Ivan Ilyich of whatever disease he had, so too we took for granted that honesty and kindness were basic responsibilities of a modern doctor. We were confident that in such a situation we would act compassionately. What worried us was knowledge. While we knew how to sympathize, we weren’t at all certain we would know how to properly diagnose and treat. We paid our medical tuition to learn about the inner process of the body, the intricate mechanisms of its pathologies, and the vast trove of discoveries and technologies that have accumulated to stop them. We didn’t imagine we needed to think about much else. So we put Ivan Ilyich out of our heads. Yet within a few years, when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them. * * * I BEGAN WRITING when I was a junior surgical resident, and in one of my very first essays, I told the story of a man whom I called Joseph Lazaroff. He was a city administrator who’d lost his wife to lung cancer a few years earlier. Now, he was in his sixties and suffering from an incurable cancer himself—a widely metastatic prostate cancer. He had lost more than fifty pounds. His abdomen, scrotum, and legs had filled with fluid. One day, he woke up unable to move his right leg or control his bowels. He was admitted to the hospital, where I met him as an intern on the neurosurgical team. We found that the cancer had spread to his thoracic spine, where it was compressing his spinal cord. The cancer couldn’t be cured, but we hoped it could be treated. Emergency radiation, however, failed to shrink the cancer, and so the neurosurgeon offered him two options: comfort care or surgery to remove the growing tumor mass from his spine. Lazaroff chose surgery. My job, as the intern on the neurosurgery service, was to get his written confirmation that he understood the risks of the operation and wished to proceed. I’d stood outside his room, his chart in my damp hand, trying to figure out how to even broach the subject with him. The hope was that the operation would halt the progression of his spinal cord damage. It wouldn’t cure him, or reverse his paralysis, or get him back to the life he had led. No matter what we did he had at most a few months to live, and the procedure was inherently dangerous. It required opening his chest, removing a rib, and collapsing a lung to get at his spine. Blood loss would be high. Recovery would be difficult. In his weakened state, he faced considerable risks of debilitating complications afterward. The operation posed a threat of both worsening and shortening his life. But the neurosurgeon had gone over these dangers, and Lazaroff had been clear that he wanted the operation. All I had to do was go in and take care of the paperwork. Lying in his bed, Lazaroff looked gray and emaciated. I said that I was an intern and that I’d come to get his consent for surgery, which required confirming that he was aware of the risks. I said that the operation could remove the tumor but leave him with serious complications, such as paralysis or a stroke, and that it could even prove fatal. I tried to sound clear without being harsh, but my discussion put his back up. Likewise when his son, who was in the room, questioned whether heroic measures were a good idea. Lazaroff didn’t like that at all. “Don’t you give up on me,” he said. “You give me every chance I’ve got.” Outside the room, after he signed the form, the son took me aside. His mother had died on a ventilator in intensive care, and at the time his father had said he did not want anything like that to happen to him. But now he was adamant about doing “everything.” I believed then that Mr. Lazaroff had chosen badly, and I still believe this. He chose badly not because of all the dangers but because the operation didn’t stand a chance of giving him what he really wanted: his continence, his strength, the life he had previously known. He was pursuing little more than a fantasy at the risk of a prolonged and terrible death—which was precisely what he got. The operation was a technical success. Over eight and a half hours, the surgical team removed the mass invading his spine and rebuilt the vertebral body with acrylic cement. The pressure on his spinal cord was gone. But he never recovered from the procedure. In intensive care, he developed respiratory failure, a systemic infection, blood clots from his immobility, then bleeding from the blood thinners to treat them. Each day we fell further behind. We finally had to admit he was dying. On the fourteenth day, his son told the team that we should stop. It fell to me to take Lazaroff off the artificial ventilator that was keeping him alive. I checked to make sure that his morphine drip was turned up high, so he wouldn’t suffer from air hunger. I leaned close and, in case he could hear me, said I was going to take the breathing tube out of his mouth. He coughed a couple of times when I pulled it out, opened his eyes briefly, and closed them. His breathing grew labored, then stopped. I put my stethoscope on his chest and heard his heart fade away. Now, more than a decade after I first told Mr. Lazaroff’s story, what strikes me most is not how bad his decision was but how much we all avoided talking honestly about the choice before him. We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons, and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result. We did little better than Ivan Ilyich’s primitive nineteenth-century doctors—worse, actually, given the new forms of physical torture we’d inflicted on our patient. It is enough to make you wonder, who are the primitive ones. * * * MODERN SCIENTIFIC CAPABILITY has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it. This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital—say, from a massive heart attack, stroke, or violent injury—or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes. When I became a doctor, I crossed over to the other side of the hospital doors and, although I had grown up with two doctors for parents, everything I saw was new to me. I had certainly never seen anyone die before and when I did it came as a shock. That wasn’t because it made me think of my own mortality. Somehow the concept didn’t occur to me, even when I saw people my own age die. I had a white coat on; they had a hospital gown. I couldn’t quite picture it the other way round. I could, however, picture my family in their places. I’d seen multiple family members—my wife, my parents, and my children—go through serious, life-threatening illnesses. Even under dire circumstances, medicine had always pulled them through. The shock to me therefore was seeing medicine not pull people through. I knew theoretically that my patients could die, of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken. I don’t know what game I thought this was, but in it we always won. Dying and death confront every new doctor and nurse. The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house—in my own bed. “How did he get here?” I’d wonder in panic. I knew I would be in huge trouble, maybe criminal trouble, if I didn’t get the body back to the hospital without getting caught. I’d try to lift it into the back of my car, but it would be too heavy. Or I’d get it in, only to find blood seeping out like black oil until it overflowed the trunk. Or I’d actually get the corpse to the hospital and onto a gurney, and I’d push it down hall after hall, trying and failing to find the room where the person used to be. “Hey!” someone would shout and start chasing me. I’d wake up next to my wife in the dark, clammy and tachycardic. I felt that I’d killed these people. I’d failed. Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely—that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for. The late surgeon Sherwin Nuland, in his classic book How We Die, lamented, “The necessity of nature’s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them.” But as I ride down the runway of the twenty-first century, trained in the deployment of our awesome arsenal of technology, I wonder exactly what being less arrogant really means. You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems. Your competence gives you a secure sense of identity. For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve. There’s no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don’t haunt my dreams anymore. But that’s not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering. This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing. * * * THIS IS A book about the modern experience of mortality—about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong. As I pass a decade in surgical practice and become middle-aged myself, I find that neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible. I have the writer’s and scientist’s faith, however, that by pulling back the veil and peering in close, a person can make sense of what is most confusing or strange or disturbing. You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers. I wrote this book in the hope of understanding what has happened. Mortality can be a treacherous subject. Some will be alarmed by the prospect of a doctor’s writing about the inevitability of decline and death. For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed—victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognized? 1 • The Independent Self Growing up, I never witnessed serious illness or the difficulties of old age. My parents, both doctors, were fit and healthy. They were immigrants from India, raising me and my sister in the small college town of Athens, Ohio, so my grandparents were far away. The one elderly person I regularly encountered was a woman down the street who gave me piano lessons when I was in middle school. Later she got sick and had to move away, but it didn’t occur to me to wonder where she went and what happened to her. The experience of a modern old age was entirely outside my perception. In college, however, I began dating a girl in my dorm named Kathleen, and in 1985, on a Christmas visit to her home in Alexandria, Virginia, I met her grandmother Alice Hobson, who was seventy-seven at the time. She struck me as spirited and independent minded. She never tried to disguise her age. Her undyed white hair was brushed straight and parted on one side, Bette Davis–style. Her hands were speckled with age spots, and her skin was crinkled. She wore simple, neatly pressed blouses and dresses, a bit of lipstick, and heels long past when others would have considered it advisable. As I came to learn over the years—for I would eventually marry Kathleen—Alice grew up in a rural Pennsylvania town known for its flower and mushroom farms. Her father was a flower farmer, growing carnations, marigolds, and dahlias, in acres of greenhouses. Alice and her siblings were the first members of their family to attend college. At the University of Delaware, Alice met Richmond Hobson, a civil engineering student. Thanks to the Great Depression, it wasn’t until six years after their graduation that they could afford to get married. In the early years, Alice and Rich moved often for his work. They had two children, Jim, my future father-in-law, and then Chuck. Rich was hired by the Army Corps of Engineers and became an expert in large dam and bridge construction. A decade later, he was promoted to a job working with the corps’s chief engineer at headquarters outside Washington, DC, where he remained for the rest of his career. He and Alice settled in Arlington. They bought a car, took road trips far and wide, and put away some money, too. They were able to upgrade to a bigger house and send their brainy kids off to college without need of loans. Then, on a business trip to Seattle, Rich had a sudden heart attack. He’d had a history of angina and took nitroglycerin tablets to relieve the occasional bouts of chest pain, but this was 1965, and back then doctors didn’t have much they could do about heart disease. He died in the hospital before Alice could get there. He was just sixty years old. Alice was fifty-six. With her pension from the Army Corps of Engineers, she was able to keep her Arlington home. When I met her, she’d been living on her own in that house on Greencastle Street for twenty years. My in-laws, Jim and Nan, were nearby, but Alice lived completely independently. She mowed her own lawn and knew how to fix the plumbing. She went to the gym with her friend Polly. She liked to sew and knit and made clothes, scarves, and elaborate red-and-green Christmas stockings for everyone in the family, complete with a button-nosed Santa and their names across the top. She organized a group that took an annual subscription to attend performances at the Kennedy Center for the Performing Arts. She drove a big V8 Chevrolet Impala, sitting on a cushion to see over the dashboard. She ran errands, visited family, gave friends rides, and delivered meals-on-wheels for those with more frailties than herself. As time went on, it became hard not to wonder how much longer she’d be able to manage. She was a petite woman, five feet tall at most, and although she bristled when anyone suggested it, she lost some height and strength with each passing year. When I married her granddaughter, Alice beamed and held me close and told me how happy the wedding made her, but she’d become too arthritic to share a dance with me. And still she remained in her home, managing on her own. When my father met her, he was surprised to learn she lived by herself. He was a urologist, which meant he saw many elderly patients, and it always bothered him to find them living alone. The way he saw it, if they didn’t already have serious needs, they were bound to develop them, and coming from India he felt it was the family’s responsibility to take the aged in, give them company, and look after them. Since arriving in New York City in 1963 for his residency training, my father had embraced virtually every aspect of American culture. He gave up vegetarianism and discovered dating. He got a girlfriend, a pediatrics resident from a part of India where they didn’t speak his language. When he married her, instead of letting my grandfather arrange his marriage, the family was scandalized. He became a tennis enthusiast, president of the local Rotary Club, and teller of bawdy jokes. One of his proudest days was July 4, 1976, the country’s bicentennial, when he was made an American citizen in front of hundreds of cheering people in the grandstand at the Athens County Fair between the hog auction and the demolition derby. But one thing he could never get used to was how we treat our old and frail—leaving them to a life alone or isolating them in a series of anonymous facilities, their last conscious moments spent with nurses and doctors who barely knew their names. Nothing could have been more different from the world he had grown up in. * * * MY FATHER’S FATHER had the kind of traditional old age that, from a Western perspective, seems idyllic. Sitaram Gawande was a farmer in a village called Uti, some three hundred miles inland from Mumbai, where our ancestors had cultivated land for centuries. I remember visiting him with my parents and sister around the same time I met Alice, when he was more than a hundred years old. He was, by far, the oldest person I’d ever known. He walked with a cane, stooped like a bent stalk of wheat. He was so hard of hearing that people had to shout in his ear through a rubber tube. He was weak and sometimes needed help getting up from sitting. But he was a dignified man, with a tightly wrapped white turban, a pressed, brown argyle cardigan, and a pair of old-fashioned, thick-lensed, Malcolm X–style spectacles. He was surrounded and supported by family at all times, and he was revered—not in spite of his age but because of it. He was consulted on all important matters—marriages, land disputes, business decisions—and occupied a place of high honor in the family. When we ate, we served him first. When young people came into his home, they bowed and touched his feet in supplication. In America, he would almost certainly have been placed in a nursing home. Health professionals have a formal classification system for the level of function a person has. If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own. My grandfather could perform only some of the basic measures of independence, and few of the more complex ones. But in India, this was not of any dire consequence. His situation prompted no family crisis meeting, no anguished debates over what to do with him. It was clear that the family would ensure my grandfather could continue to live as he desired. One of my uncles and his family lived with him, and with a small herd of children, grandchildren, nieces, and nephews nearby, he never lacked for help. The arrangement allowed him to maintain a way of life that few elderly people in modern societies can count on. The family made it possible, for instance, for him to continue to own and manage his farm, which he had built up from nothing—indeed, from worse than nothing. His father had lost all but two mortgaged acres and two emaciated bulls to a moneylender when the harvest failed one year. He then died, leaving Sitaram, his eldest son, with the debts. Just eighteen years old and newly married, Sitaram was forced to enter into indentured labor on the family’s two remaining acres. At one point, the only food he and his bride could afford was bread and salt. They were starving to death. But he prayed and stayed at the plow, and his prayers were answered. The harvest was spectacular. He was able to not only put food on the table but also pay off his debts. In subsequent years, he expanded his two acres to more than two hundred. He became one of the richest landowners in the village and a moneylender himself. He had three wives, all of whom he outlived, and thirteen children. He emphasized education, hard work, frugality, earning your own way, staying true to your word, and holding others strictly accountable for doing the same. Throughout his life, he awoke before sunrise and did not go to bed until he’d done a nighttime inspection of every acre of his fields by horse. Even when he was a hundred he would insist on doing this. My uncles were worried he’d fall—he was weak and unsteady—but they knew it was important to him. So they got him a smaller horse and made sure that someone always accompanied him. He made the rounds of his fields right up to the year he died. Had he lived in the West, this would have seemed absurd. It isn’t safe, his doctor would say. If he persisted, then fell, and went to an emergency room with a broken hip, the hospital would not let him return home. They’d insist that he go to a nursing home. But in my grandfather’s premodern world, how he wanted to live was his choice, and the family’s role was to make it possible. My grandfather finally died at the age of almost a hundred and ten. It happened after he hit his head falling off a bus. He was going to the courthouse in a nearby town on business, which itself seems crazy, but it was a priority to him. The bus began to move while he was getting off and, although he was accompanied by family, he fell. Most probably, he developed a subdural hematoma—bleeding inside his skull. My uncle got him home, and over the next couple of days he faded away. He got to live the way he wished and with his family around him right to the end. * * * FOR MOST OF human history, for those few people who actually survived to old age, Sitaram Gawande’s experience was the norm. Elders were cared for in multigenerational systems, often with three generations living under one roof. Even when the nuclear family replaced the extended family (as it did in northern Europe several centuries ago), the elderly were not left to cope with the infirmities of age on their own. Children typically left home as soon as they were old enough to start families of their own. But one child usually remained, often the youngest daughter, if the parents survived into senescence. This was the lot of the poet Emily Dickinson, in Amherst, Massachusetts, in the mid-nineteenth century. Her elder brother left home, married, and started a family, but she and her younger sister stayed with their parents until they died. As it happened, Emily’s father lived to the age of seventy-one, by which time she was in her forties, and her mother lived even longer. She and her sister ended up spending their entire lives in the parental home. As different as Emily Dickinson’s parents’ life in America seems from that of Sitaram Gawande’s in India, both relied on systems that shared the advantage of easily resolving the question of care for the elderly. There was no need to save up for a spot in a nursing home or arrange for meals-on-wheels. It was understood that parents would just keep living in their home, assisted by one or more of the children they’d raised. In contemporary societies, by contrast, old age and infirmity have gone from being a shared, multigenerational responsibility to a more or less private state—something experienced largely alone or with the aid of doctors and institutions. How did this happen? How did we go from Sitaram Gawande’s life to Alice Hobson’s? One answer is that old age itself has changed. In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history. They tended to maintain their status and authority as heads of the household until death. In many societies, elders not only commanded respect and obedience but also led sacred rites and wielded political power. So much respect accrued to the elderly that people used to pretend to be older than they were, not younger, when giving their age. People have always lied about how old they are. Demographers call the phenomenon “age heaping” and have devised complex quantitative contortions to correct for all the lying in censuses. They have also noticed that, during the eighteenth century, in the United States and Europe, the direction of our lies changed. Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired. But age no longer has the value of rarity. In America, in 1790, people aged sixty-five or older constituted less than 2 percent of the population; today, they are 14 percent. In Germany, Italy, and Japan, they exceed 20 percent. China is now the first country on earth with more than 100 million elderly people. As for the exclusive hold that elders once had on knowledge and wisdom, that, too, has eroded, thanks to technologies of communication—starting with writing itself and extending to the Internet and beyond. New technology also creates new occupations and requires new expertise, which further undermines the value of long experience and seasoned judgment. At one time, we might have turned to an old-timer to explain the world. Now we consult Google, and if we have any trouble with the computer we ask a teenager. Perhaps most important of all, increased longevity has brought about a shift in the relationship between the young and the old. Traditionally, surviving parents provided a source of much-needed stability, advice, and economic protection for young families seeking pathways to security. And because landowners also tended to hold on to their property until death, the child who sacrificed everything to care for the parents could expect to inherit the whole homestead, or at least a larger portion than a child who moved away. But once parents were living markedly longer lives, tension emerged. For young people, the traditional family system became less a source of security than a struggle for control—over property, finances, and even the most basic decisions about how they could live. And indeed, in my grandfather Sitaram’s traditional household, generational tension was never far away. You can imagine how my uncles felt as their father turned a hundred and they entered old age themselves, still waiting to inherit land and gain economic independence. I learned of bitter battles in village families between elders and adult children over land and money. In the final year of my grandfather’s life, an angry dispute erupted between him and my uncle with whom he lived. The original cause was unclear: perhaps my uncle had made a business decision without my grandfather; maybe my grandfather wanted to go out and no one in the family would go with him; maybe he liked to sleep with the window open and they liked to sleep with the window closed. Whatever the reason, the argument culminated (depending on who told the story) in Sitaram’s either storming out of the house in the dead of night or being locked out. He somehow made it miles away to another relative’s house and refused to return for two months. Global economic development has changed opportunities for the young dramatically. The prosperity of whole countries depends on their willingness to escape the shackles of family expectation and follow their own path—to seek out jobs wherever they might be, do whatever work they want, marry whom they desire. So it was with my father’s path from Uti to Athens, Ohio. He left the village first for university in Nagpur and then for professional opportunity in the States. As he became successful, he sent ever larger amounts of money home, helping to build new houses for his father and siblings, bring clean water and telephones to the village, and install irrigation systems that ensured harvests when the rainy seasons were bad. He even built a rural college nearby that he named for his mother. But there was no denying that he had left, and he wasn’t going back. Disturbed though my father was by the way America treated its elderly, the more traditional old age that my grandfather was able to maintain was possible only because my father’s siblings had not left home as he had. We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it. The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone. * * * THE FASCINATING THING is that, over time, it doesn’t seem that the elderly have been especially sorry to see the children go. Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own. Instead, with growing economies, a shift in the pattern of property ownership occurred. As children departed home for opportunities elsewhere, parents who lived long lives found they could rent or even sell their land instead of handing it down. Rising incomes, and then pension systems, enabled more and more people to accumulate savings and property, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability. The radical concept of “retirement” started to take shape. Life expectancy, which was under fifty in 1900, climbed to more than sixty by the 1930s, as improvements in nutrition, sanitation, and medical care took hold. Family sizes fell from an average of seven children in the mid-1800s to just over three after 1900. The average age at which a mother had her last child fell too—from menopause to thirty or younger. As a result, vastly more people lived to see their children reach adulthood. In the early twentieth century, a woman would have been fifty when her last child turned twenty-one, instead of in her sixties a century before. Parents had many years, easily a decade or more, before they or their children had to worry about old age. So what they did was move on, just like their children. Given the opportunity, both parents and children saw separation as a form of freedom. Whenever the elderly have had the financial means, they have chosen what social scientists have called “intimacy at a distance.” Whereas in early-twentieth-century America 60 percent of those over age sixty-five resided with a child, by the 1960s the proportion had dropped to 25 percent. By 1975 it was below 15 percent. The pattern is a worldwide one. Just 10 percent of Europeans over age eighty live with their children, and almost half live completely alone, without a spouse. In Asia, where the idea of an elderly parent being left to live alone has traditionally been regarded as shameful—the way my father saw it—the same radical shift is taking place. In China, Japan, and Korea, national statistics show the percentage of elderly living alone rising rapidly. This is actually a sign of enormous progress. Choices for the elderly have proliferated. Del Webb, an Arizona real estate developer, popularized the term “retirement community” in 1960 when he launched Sun City, a community in Phoenix that was among the first to limit its residents to retirees. It was a controversial idea at the time. Most developers believed the elderly wanted more contact with other generations. Webb disagreed. He believed people in the last phase of their lives didn’t want to live the way my grandfather did, with the family underfoot. He built Sun City as a place with an alternate vision of how people would spend what he called “their leisure years.” It had a golf course, a shopping arcade, and a recreation center, and it offered the prospect of an active retirement of recreation and dining out with others like them to share it with. Webb’s vision proved massively popular, and in Europe, the Americas, and even Asia, retirement communities have become a normal presence. For those who had no interest in moving into such places—Alice Hobson, for instance—it became acceptable and feasible to remain in their own homes, living as they wanted to live, autonomously. That fact remains something to celebrate. There is arguably no better time in history to be old. The lines of power between the generations have been renegotiated, and not in the way it is sometimes believed. The aged did not lose status and control so much as share it. Modernization did not demote the elderly. It demoted the family. It gave people—the young and the old—a way of life with more liberty and control, including the liberty to be less beholden to other generations. The veneration of elders may be gone, but not because it has been replaced by veneration of youth. It’s been replaced by veneration of the independent self. * * * THERE REMAINS ONE problem with this way of living. Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained? In 1992, Alice turned eighty-four. She was in striking health. She’d had to make a transition to false teeth and undergo removal of cataracts in both eyes. That was all. She’d had no major illnesses or hospitalizations. She still went to the gym with her friend Polly and did her own shopping and took care of her house. Jim and Nan offered her the option of turning their basement into an apartment for her. She might find it easier to be there, they said. She wouldn’t hear of it. She had no intention of not living on her own. But things began to change. On a mountain vacation with the family, Alice didn’t turn up for lunch. She was found sitting in the wrong cabin, wondering where everyone was. We’d never seen her confused like that before. The family kept a close eye on her for the next few days, but nothing else untoward happened. We all let the matter drop. Then Nan, visiting Alice at home one afternoon, noticed black-and-blue bruises up and down her leg. Had she fallen? No, Alice said at first. But later she admitted that she’d taken a spill going down the wooden basement stairs. It was just a slip, she insisted. It could have happened to anyone. She’d be more careful next time. Soon, however, she had more falls, several of them. No broken bones, but the family was getting worried. So Jim did what all families naturally do nowadays. He had her see a doctor. The doctor did some tests. He found that she had thinning bones and recommended calcium. He fiddled with her medications and gave her some new prescriptions. But the truth was he didn’t know what to do. We were not bringing him a fixable problem. Alice was unsteady. Her memory was slipping. The problems were only going to increase. Her independence would not be sustainable for long now. But he had no answers or direction or guidance. He could not even describe what to expect would happen. 2 • Things Fall Apart Medicine and public health have transformed the trajectory of our lives. For all but our most recent history, death was a common, ever-present possibility. It didn’t matter whether you were five or fifty. Every day was a roll of the dice. If you plotted the typical course of a person’s health, it would look like this: Life and health would putter along nicely, not a problem in the world. Then illness would hit and the bottom would drop out like a trap door—the way it did for my grandmother Gopikabai Gawande, who’d been perfectly well until the day she was struck by a fatal case of malaria, not even thirty years old, or for Rich Hobson, who had a heart attack on a business trip and then was gone. Over the years, with medical progress, the bottom has tended to drop out later and later. The advent of sanitation and other public health measures sharply reduced the likelihood of death from infectious disease, especially in early childhood, and clinical advances dramatically reduced the mortality of childbirth and traumatic injuries. By the middle of the twentieth century, just four out of every hundred people in industrialized countries died before the age of thirty. And in the decades since, medicine found ways to cut the mortality of heart attacks, respiratory illnesses, stroke, and numerous other conditions that threaten in adult life. Eventually, of course, we all die of something. But even then, medicine has pushed the fatal moment of many diseases further outward. People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis. They undergo treatment. Symptoms come under control. They resume regular life. They don’t feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses. Eventually, it makes itself known, turning up in the lungs, or in the brain, or in the spine, as it did with Joseph Lazaroff. From there, the decline is often relatively rapid, much as in the past. Death occurs later, but the trajectory remains the same. In a matter of months or weeks, the body becomes overwhelmed. That is why, although the diagnosis may have been present for years, death can still come as a surprise. The road that seemed so straight and steady can still disappear, putting a person on a fast and steep slide down. The pattern of decline has changed, however, for many chronic illnesses—emphysema, liver disease, and congestive heart failure, for example. Instead of just delaying the moment of the downward drop, our treatments can stretch the descent out until it ends up looking less like a cliff and more like a hilly road down the mountain: The road can have vertiginous drops but also long patches of recovered ground: we may not be able to stave off the damage, but we can stave off the death. We have drugs, fluids, surgery, intensive care units to get people through. They enter the hospital looking terrible, and some of what we do can make them look worse. But just when it looks like they’ve breathed their last, they rally. We make it possible for them to make it home—weaker and more impaired, though. They never return to their previous baseline. As illness progresses and organ damage worsens, a person becomes less able to withstand even minor problems. A simple cold can be fatal. The ultimate course is still downward until there finally comes a time when there is no recovery at all. The trajectory that medical progress has made possible for many people, though, follows neither of these two patterns. Instead, increasingly large numbers of us get to live out a full life span and die of old age. Old age is not a diagnosis. There is always some final proximate cause that gets written down on the death certificate—respiratory failure, cardiac arrest. But in truth no single disease leads to the end; the culprit is just the accumulated crumbling of one’s bodily systems while medicine carries out its maintenance measures and patch jobs. We reduce the blood pressure here, beat back the osteoporosis there, control this disease, track that one, replace a failed joint, valve, piston, watch the central processing unit gradually give out. The curve of life becomes a long, slow fade: The progress of medicine and public health has been an incredible boon—people get to live longer, healthier, more productive lives than ever before. Yet traveling along these altered paths, we regard living in the downhill stretches with a kind of embarrassment. We need help, often for long periods of time, and regard that as a weakness rather than as the new normal and expected state of affairs. We’re always trotting out some story of a ninety-seven-year-old who runs marathons, as if such cases were not miracles of biological luck but reasonable expectations for all. Then, when our bodies fail to live up to this fantasy, we feel as if we somehow have something to apologize for. Those of us in medicine don’t help, for we often regard the patient on the downhill as uninteresting unless he or she has a discrete problem we can fix. In a sense, the advances of modern medicine have given us two revolutions: we’ve undergone a biological transformation of the course of our lives and also a cultural transformation of how we think about that course. * * * THE STORY OF aging is the story of our parts. Consider the teeth. The hardest substance in the human body is the white enamel of the teeth. With age, it nonetheless wears away, allowing the softer, darker layers underneath to show through. Meanwhile, the blood supply to the pulp and the roots of the teeth atrophies, and the flow of saliva diminishes; the gums tend to become inflamed and pull away from the teeth, exposing the base, making them unstable and elongating their appearance, especially the lower ones. Experts say they can gauge a person’s age to within five years from the examination of a single tooth—if the person has any teeth left to examine. Scrupulous dental care can help avert tooth loss, but growing old gets in the way. Arthritis, tremors, and small strokes, for example, make it difficult to brush and floss, and because nerves become less sensitive with age, people may not realize that they have cavity and gum problems until it’s too late. In the course of a normal lifetime, the muscles of the jaw lose about 40 percent of their mass and the bones of the mandible lose about 20 percent, becoming porous and weak. The ability to chew declines, and people shift to softer foods, which are generally higher in fermentable carbohydrates and more likely to cause cavities. By the age of sixty, people in an industrialized country like the United States have lost, on average, a third of their teeth. After eighty-five, almost 40 percent have no teeth at all. Even as our bones and teeth soften, the rest of our body hardens. Blood vessels, joints, the muscle and valves of the heart, and even the lungs pick up substantial deposits of calcium and turn stiff. Under a microscope, the vessels and soft tissues display the same form of calcium that you find in bone. When you reach inside an elderly patient during surgery, the aorta and other major vessels can feel crunchy under your fingers. Research has found that loss of bone density may be an even better predictor of death from atherosclerotic disease than cholesterol levels. As we age, it’s as if the calcium seeps out of our skeletons and into our tissues. To maintain the same volume of blood flow through our narrowed and stiffened blood vessels, the heart has to generate increased pressure. As a result, more than half of us develop hypertension by the age of sixty-five. The heart becomes thicker-walled from having to pump against the pressure, and less able to respond to the demands of exertion. The peak output of the heart therefore decreases steadily from the age of thirty. People become gradually less able to run as far or as fast as they used to or to climb a flight of stairs without becoming short of breath. As the heart muscle thickens, muscle elsewhere thins. Around age forty, one begins to lose muscle mass and power. By age eighty, one has lost between a quarter and a half of one’s muscle weight. You can see all these processes play out just in the hand: 40 percent of the muscle mass of the hand is in the thenar muscles, the muscles of the thumb, and if you look carefully at the palm of an older person, at the base of the thumb, you will notice that the musculature is not bulging but flat. In a plain X-ray, you will see speckles of calcification in the arteries and translucency of the bones, which, from age fifty, lose their density at a rate of nearly 1 percent per year. The hand has twenty-nine joints, each of which is prone to destruction from osteoarthritis, and this will give the joint surfaces a ragged, worn appearance. The joint space collapses. You can see bone touching bone. What the person feels is swelling around the joints, reduced range of motion of the wrist, diminished grip, and pain. The hand also has forty-eight named nerve branches. Deterioration of the cutaneous mechanoreceptors in the pads of the fingers produces loss of sensitivity to touch. Loss of motor neurons produces loss of dexterity. Handwriting degrades. Hand speed and vibration sense decline. Using a standard mobile phone, with its tiny buttons and touch screen display, becomes increasingly unmanageable. This is normal. Although the processes can be slowed—diet and physical activity can make a difference—they cannot be stopped. Our functional lung capacity decreases. Our bowels slow down. Our glands stop functioning. Even our brains shrink: at the age of thirty, the brain is a three-pound organ that barely fits inside the skull; by our seventies, gray-matter loss leaves almost an inch of spare room. That’s why elderly people like my grandfather are so much more prone to cerebral bleeding after a blow to the head—the brain actually rattles around inside. The earliest portions to shrink are generally the frontal lobes, which govern judgment and planning, and the hippocampus, where memory is organized. As a consequence, memory and the ability to gather and weigh multiple ideas—to multitask—peaks in midlife and then gradually declines. Processing speeds start decreasing well before age forty (which may be why mathematicians and physicists commonly do their best work in their youth). By age eighty-five, working memory and judgment are sufficiently impaired that 40 percent of us have textbook dementia. * * * WHY WE AGE is the subject of vigorous debate. The classical view is that aging happens because of random wear and tear. The newest view holds that aging is more orderly and genetically programmed. Proponents of this view point out that animals of similar species and exposure to wear and tear have markedly different life spans. The Canada goose has a longevity of 23.5 years; the emperor goose only 6.3 years. Perhaps animals are like plants, with lives that are, to a large extent, internally governed. Certain species of bamboo, for instance, form a dense stand that grows and flourishes for a hundred years, flowers all at once, and then dies. The idea that living things shut down instead of wearing down has received substantial support in recent years. Researchers working with the now famous worm C. elegans (twice in one decade, Nobel Prizes went to scientists doing work on the little nematode) were able, by altering a single gene, to produce worms that live more than twice as long and age more slowly. Scientists have since come up with single-gene alterations that increase the life spans of fruit flies, mice, and yeast. These findings notwithstanding, the preponderance of the evidence is against the idea that our life spans are programmed into us. Remember that for most of our hundred-thousand-year existence—all but the past couple of hundred years—the average life span of human beings has been thirty years or less. (Research suggests that subjects of the Roman Empire had an average life expectancy of twenty-eight years.) The natural course was to die before old age. Indeed, for most of history, death was a risk at every age of life and had no obvious connection with aging, at all. As Montaigne wrote, observing late-sixteenth-century life, “To die of age is a rare, singular, and extraordinary death, and so much less natural than others: it is the last and extremest kind of dying.” So today, with our average life span in much of the world climbing past eighty years, we are already oddities living well beyond our appointed time. When we study aging what we are trying to understand is not so much a natural process as an unnatural one. It turns out that inheritance has surprisingly little influence on longevity. James Vaupel, of the Max Planck Institute for Demographic Research, in Rostock, Germany, notes that only 3 percent of how long you’ll live, compared with the average, is explained by your parents’ longevity; by contrast, up to 90 percent of how tall you are is explained by your parents’ height. Even genetically identical twins vary widely in life span: the typical gap is more than fifteen years. If our genes explain less than we imagined, the classical wear-and-tear model may explain more than we knew. Leonid Gavrilov, a researcher at the University of Chicago, argues that human beings fail the way all complex systems fail: randomly and gradually. As engineers have long recognized, simple devices typically do not age. They function reliably until a critical component fails, and the whole thing dies in an instant. A windup toy, for example, works smoothly until a gear rusts or a spring breaks, and then it doesn’t work at all. But complex systems—power plants, say—have to survive and function despite having thousands of critical, potentially fragile components. Engineers therefore design these machines with multiple layers of redundancy: with backup systems, and backup systems for the backup systems. The backups may not be as efficient as the first-line components, but they allow the machine to keep going even as damage accumulates. Gavrilov argues that, within the parameters established by our genes, that’s exactly how human beings appear to work. We have an extra kidney, an extra lung, an extra gonad, extra teeth. The DNA in our cells is frequently damaged under routine conditions, but our cells have a number of DNA repair systems. If a key gene is permanently damaged, there are usually extra copies of the gene nearby. And, if the entire cell dies, other cells can fill in. Nonetheless, as the defects in a complex system increase, the time comes when just one more defect is enough to impair the whole, resulting in the condition known as frailty. It happens to power plants, cars, and large organizations. And it happens to us: eventually, one too many joints are damaged, one too many arteries calcify. There are no more backups. We wear down until we can’t wear down anymore. It happens in a bewildering array of ways. Hair grows gray, for instance, simply because we run out of the pigment cells that give hair its color. The natural life cycle of the scalp’s pigment cells is just a few years. We rely on stem cells under the surface to migrate in and replace them. Gradually, however, the stem-cell reservoir is used up. By the age of fifty, as a result, half of the average person’s hairs have gone gray. Inside skin cells, the mechanisms that clear out waste products slowly break down and the residue coalesces into a clot of gooey yellow-brown pigment known as lipofuscin. These are the age spots we see in skin. When lipofuscin accumulates in sweat glands, the sweat glands cannot function, which helps explain why we become so susceptible to heat stroke and heat exhaustion in old age. The eyes go for different reasons. The lens is made of crystallin proteins that are tremendously durable, but they change chemically in ways that diminish their elasticity over time—hence the farsightedness that most people develop beginning in their fourth decade. The process also gradually yellows the lens. Even without cataracts (the whitish clouding of the lens that occurs with age, excessive ultraviolet exposure, high cholesterol, diabetes, and cigarette smoking), the amount of light reaching the retina of a healthy sixty-year-old is one-third that of a twenty-year-old. I spoke to Felix Silverstone, who for twenty-four years was the senior geriatrician at the Parker Jewish Institute, in New York, and who has published more than a hundred studies on aging. There is, he told me, “no single, common cellular mechanism to the aging process.” Our bodies accumulate lipofuscin and oxygen free-radical damage and random DNA mutations and numerous other microcellular problems. The process is gradual and unrelenting. I asked Silverstone whether gerontologists have discerned any particular, reproducible pathway to aging. “No,” he said. “We just fall apart.” * * * THIS IS NOT, to say the least, an appealing prospect. People naturally prefer to avoid the subject of their decrepitude. There have been dozens of bestselling books on aging, but they tend to have titles such as Younger Next Year, The Fountain of Age, Ageless, or—my favorite—The Sexy Years. Still, there are costs to averting our eyes from the realities. We put off dealing with the adaptations that we need to make as a society. And we blind ourselves to the opportunities that exist to change the individual experience of aging for the better. As medical progress has extended our lives, the result has been what’s called the “rectangularization” of survival. Throughout most of human history, a society’s population formed a sort of pyramid: young children represented the largest portion—the base—and each successively older cohort represented a smaller and smaller group. In 1950, children under the age of five were 11 percent of the US population, adults aged forty-five to forty-nine were 6 percent, and those over eighty were 1 percent. Today, we have as many fifty-year-olds as five-year-olds. In thirty years, there will be as many people over eighty as there are under five. The same pattern is emerging throughout the industrialized world. Few societies have come to grips with the new demography. We cling to the notion of retirement at sixty-five—a reasonable notion when those over sixty-five were a tiny percentage of the population but increasingly untenable as they approach 20 percent. People are putting aside less in savings for old age now than they have at any time since the Great Depression. More than half of the very old now live without a spouse and we have fewer children than ever before, yet we give virtually no thought to how we will live out our later years alone. Equally worrying, and far less recognized, medicine has been slow to confront the very changes that it has been responsible for—or to apply the knowledge we have about how to make old age better. Although the elderly population is growing rapidly, the number of certified geriatricians the medical profession has put in practice has actually fallen in the United States by 25 percent between 1996 and 2010. Applications to training programs in adult primary care medicine have plummeted, while fields like plastic surgery and radiology receive applications in record numbers. Partly, this has to do with money—incomes in geriatrics and adult primary care are among the lowest in medicine. And partly, whether we admit it or not, a lot of doctors don’t like taking care of the elderly. “Mainstream doctors are turned off by geriatrics, and that’s because they do not have the faculties to cope with the Old Crock,” Felix Silverstone, the geriatrician, explained to me. “The Old Crock is deaf. The Old Crock has poor vision. The Old Crock’s memory might be somewhat impaired. With the Old Crock, you have to slow down, because he asks you to repeat what you are saying or asking. And the Old Crock doesn’t just have a chief complaint—the Old Crock has fifteen chief complaints. How in the world are you going to cope with all of them? You’re overwhelmed. Besides, he’s had a number of these things for fifty years or so. You’re not going to cure something he’s had for fifty years. He has high blood pressure. He has diabetes. He has arthritis. There’s nothing glamorous about taking care of any of those things.” There is, however, a skill to it, a developed body of professional expertise. One may not be able to fix such problems, but one can manage them. And until I visited my hospital’s geriatrics clinic and saw the work that the clinicians there do, I did not fully grasp the nature of the expertise involved, or how important it could be for all of us. * * * THE GERIATRICS CLINIC—OR, as my hospital calls it, the Center for Older Adult Health (even in a clinic geared to people eighty years or older, patients view words like “geriatrics” or just “elderly” askance)—is only one floor below my surgery clinic. I passed by it almost every day for years, and I can’t remember ever giving it a moment’s thought. One morning, however, I wandered downstairs and, with the permission of the patients, sat in on a few visits with Juergen Bludau, the chief geriatrician. “What brings you here today?” the doctor asked Jean Gavrilles, his first patient of the morning. She was eighty-five years old, with short, frizzy white hair, oval glasses, a lavender knit shirt, and a sweet, ready smile. Small but sturdy in appearance, she had come in walking steadily, her purse and coat clutched under one arm, her daughter trailing behind her, no support required beyond her mauve orthopedic shoes. She said that her internist had recommended that she come. About anything in particular? the doctor asked. The answer, it seemed, was yes and no. The first thing she mentioned was a lower-back pain that she’d had for months, which shot down her leg and sometimes made it difficult to get out of bed or up from a chair. She also had bad arthritis, and she showed us her fingers, which were swollen at the knuckles and bent out to the sides with what’s called a swan-neck deformity. She’d had both knees replaced a decade earlier. She had high blood pressure, “from stress,” she said, before handing Bludau her list of medications. She had glaucoma and needed to have eye exams every four months. She never used to have “bathroom problems,” but lately, she admitted, she’d started wearing a pad. She’d also had surgery for colon cancer and, by the way, she now had a lung nodule that the radiology report said could be a metastasis—a biopsy was recommended. Bludau asked her to tell him about her life, and it reminded me of the life Alice lived when I first met her at my in-laws’. Gavrilles said that she lived alone, except for her Yorkshire terrier, in a single-family house in the West Roxbury section of Boston. Her husband died of lung cancer twenty-three years ago. She did not drive. She had a son living in the area who did her shopping once a week and checked on her each day—“just to see if I’m still alive,” she joked. Another son and two daughters lived farther away, but they helped as well. Otherwise, she took care of herself quite capably. She did her own cooking and cleaning. She managed her medicines and her bills. “I have a system,” she said. She had a high school education, and during World War II she’d worked as a riveter at the Charlestown Navy Yard. She also worked for a time at the Jordan Marsh department store in downtown Boston. But that was a long time ago. She stuck to home now, with her yard and her terrier and her family when they visited. The doctor asked her about her day in great detail. She usually woke around five or six o’clock, she said—she didn’t seem to need much sleep anymore. She would get out of bed as the back pain allowed, take a shower, and get dressed. Downstairs, she’d take her medicines, feed the dog, and eat breakfast. Bludau asked what she had for breakfast that day. Cereal and a banana, she said. She hated bananas, but she’d heard they were good for her potassium, so she was afraid to stop. After breakfast, she’d take her dog for a little walk in the yard. She did chores—laundry, cleaning, and the like. In the late morning, she took a break to watch The Price Is Right. At lunchtime, she had a sandwich and orange juice. If the weather was nice, she’d sit out in the yard afterward. She’d loved working in her garden, but she could no longer do that. The afternoons were slow. She might do some more chores. She might nap or talk on the phone. Eventually, she would make dinner—a salad and maybe a baked potato or a scrambled egg. At night, she watched the Red Sox or the Patriots or college basketball—she loved sports. She usually went to bed at about midnight. Bludau asked her to sit on the examining table. As she struggled to climb up, her balance teetering on the step, the doctor held her arm. He checked her blood pressure, which was normal. He examined her eyes and ears and had her open her mouth. He listened to her heart and lungs briskly, with his stethoscope. He began to slow down only when he looked at her hands. The nails were neatly trimmed. “Who cuts your nails?” he asked. “I do,” Gavrilles replied. I tried to think what could be accomplished in this visit. She was in good condition for her age, but she faced everything from advancing arthritis and incontinence to what might be metastatic colon cancer. It seemed to me that, with just a forty-minute visit, Bludau needed to triage by zeroing in on either the most potentially life-threatening problem (the possible metastasis) or the problem that bothered her the most (the back pain). But this was evidently not what he thought. He asked almost nothing about either issue. Instead, he spent much of the exam looking at her feet. “Is that really necessary?” she asked, when he instructed her to take off her shoes and socks. “Yes,” he said. After she’d left, he told me, “You must always examine the feet.” He described a bow-tied gentleman who seemed dapper and fit, until his feet revealed the truth: he couldn’t bend down to reach them, and they turned out not to have been cleaned in weeks, suggesting neglect and real danger. Gavrilles had difficulty taking her shoes off, and, after watching her struggle a bit, Bludau leaned in to help. When he got her socks off, he took her feet in his hands, one at a time. He inspected them inch by inch—the soles, the toes, the web spaces. Then he helped her get her socks and shoes back on and gave her and her daughter his assessment. She was doing impressively well, he said. She was mentally sharp and physically strong. The danger for her was losing what she had. The single most serious threat she faced was not the lung nodule or the back pain. It was falling. Each year, about 350,000 Americans fall and break a hip. Of those, 40 percent end up in a nursing home, and 20 percent are never able to walk again. The three primary risk factors for falling are poor balance, taking more than four prescription medications, and muscle weakness. Elderly people without these risk factors have a 12 percent chance of falling in a year. Those with all three risk factors have almost a 100 percent chance. Jean Gavrilles had at least two. Her balance was poor. Though she didn’t need a walker, he had noticed her splay-footed gait as she came in. Her feet were swollen. The toenails were unclipped. There were sores between the toes. And the balls of her feet had thick, rounded calluses. She was also on five medications. Each was undoubtedly useful, but together the usual side effects would include dizziness. In addition, one of the blood pressure medications was a diuretic, and she seemed to drink few liquids, risking dehydration and a worsening of the dizziness. Her tongue was bone-dry when Bludau examined it. She did not have significant muscle weakness, and that was good. When she got out of her chair, he said, he noted that she had not used her arms to push herself up. She simply stood up—a sign of well-preserved muscle strength. From the details of the day she described, however, she did not seem to be eating nearly enough calories to maintain that strength. Bludau asked her whether her weight had changed recently. She admitted that she had lost about seven pounds in the previous six months. The job of any doctor, Bludau later told me, is to support quality of life, by which he meant two things: as much freedom from the ravages of disease as possible and the retention of enough function for active engagement in the world. Most doctors treat disease and figure that the rest will take care of itself. And if it doesn’t—if a patient is becoming infirm and heading toward a nursing home—well, that isn’t really a medical problem, is it? To a geriatrician, though, it is a medical problem. People can’t stop the aging of their bodies and minds, but there are ways to make it more manageable and to avert at least some of the worst effects. So Bludau referred Gavrilles to a podiatrist, whom he wanted her to visit once every four weeks, for better care of her feet. He didn’t see medications that he could eliminate, but he switched her diuretic to a blood pressure medicine that wouldn’t cause dehydration. He recommended that she eat a snack during the day, get all the low-calorie and low-cholesterol food out of the house, and see whether family or friends could join her for more meals. “Eating alone is not very stimulating,” he said. And he asked her to see him again in three months, so that he could make sure the plan was working. Almost a year later, I checked in with Gavrilles and her daughter. She’d turned eighty-six. She was eating better and had even gained a pound or two. She still lived comfortably and independently in her own home. And she had not had a single fall. * * * ALICE BEGAN FALLING long before I met Juergen Bludau or Jean Gavrilles and grasped the possibilities that might have been. Neither I nor anyone else in the family understood that her falls were a loud alarm bell or that a few simple changes might have preserved, for at least some time longer, her independence and the life she wanted. Her doctors never understood this either. Matters just kept getting worse. Next came not a fall but a car accident. Backing her Chevy Impala out of her driveway, she shot across the street, over the curb, and through a yard, and could not stop the car until it ended up in some bushes against her neighbor’s house. The family speculated that she’d stomped on the accelerator instead of the brake. Alice insisted the accelerator had got stuck. She thought of herself as a good driver and hated the idea that anyone would think that the problem was her age. The body’s decline creeps like a vine. Day to day, the changes can be imperceptible. You adapt. Then something happens that finally makes it clear that things are no longer the same. The falls didn’t do it. The car accident didn’t do it. Instead, it was a scam that did. Not long after the car accident, Alice hired two men to perform tree and yard work. They set a reasonable price with her but clearly saw her as a mark. When they finished the job, they told her that she owed nearly a thousand dollars. She balked. She was very careful and organized about money. But they got angry and threatening, and, cornered, she wrote the check. She was shaken but also embarrassed and told no one about it, hoping she could put it behind her. A day later, the men returned late in the evening and demanded she pay more. She argued with them, but in the end she wrote that check, too. The ultimate total was more than seven thousand dollars. Again, she wasn’t going to say anything. Neighbors, however, heard the raised voices at Alice’s doorstep and called the police. The men were gone by the time the police arrived. A policeman took a statement from Alice and promised to investigate further. She still didn’t want to tell the family about what had happened. But she knew this was trouble and after a while finally told my father-in-law, Jim. He spoke to the neighbors who’d reported the crime. They mentioned that they had become worried for her. She no longer seemed safe living on her own. There was this incident and the Impala in the bushes. There was also what they observed of how difficult managing matters as ordinary as getting her trash to the curb had become. The police caught the scam artists and arrested them for grand larceny. The men were convicted and sentenced to prison, which should have been satisfying for Alice. But instead the whole process kept the events, and the reminders of her growing vulnerability, alive and lingering when she would have dearly loved to have set them behind her. Soon after the scammers were caught, Jim suggested that he and Alice go together to look at retirement homes. It was just to see what they were like, he said. But they both knew where this was going. * * * DECLINE REMAINS OUR fate; death will someday come. But until that last backup system inside each of us fails, medical care can influence whether the path is steep and precipitate or more gradual, allowing longer preservation of the abilities that matter most in your life. Most of us in medicine don’t think about this. We’re good at addressing specific, individual problems: colon cancer, high blood pressure, arthritic knees. Give us a disease, and we can do something about it. But give us an elderly woman with high blood pressure, arthritic knees, and various other ailments besides—an elderly woman at risk of losing the life she enjoys—and we hardly know what to do and often only make matters worse. Several years ago, researchers at the University of Minnesota identified 568 men and women over the age of seventy who were living independently but were at high risk of becoming disabled because of chronic health problems, recent illness, or cognitive changes. With their permission, the researchers randomly assigned half of them to see a team of geriatric nurses and doctors—a team dedicated to the art and science of managing old age. The others were asked to see their usual physician, who was notified of their high-risk status. Within eighteen months, 10 percent of the patients in both groups had died. But the patients who had seen a geriatrics team were a quarter less likely to become disabled and half as likely to develop depression. They were 40 percent less likely to require home health services. These were stunning results. If scientists came up with a device—call it an automatic defrailer—that wouldn’t extend your life but would slash the likelihood you’d end up in a nursing home or miserable with depression, we’d be clamoring for it. We wouldn’t care if doctors had to open up your chest and plug the thing into your heart. We’d have pink-ribbon campaigns to get one for every person over seventy-five. Congress would be holding hearings demanding to know why forty-year-olds couldn’t get them installed. Medical students would be jockeying to become defrailulation specialists, and Wall Street would be bidding up company stock prices. Instead, it was just geriatrics. The geriatric teams weren’t doing lung biopsies or back surgery or insertion of automatic defrailers. What they did was to simplify medications. They saw that arthritis was controlled. They made sure toenails were trimmed and meals were square. They looked for worrisome signs of isolation and had a social worker check that the patient’s home was safe. How do we reward this kind of work? Chad Boult, the geriatrician who was the lead investigator of the University of Minnesota study, can tell you. A few months after he published the results, demonstrating how much better people’s lives were with specialized geriatric care, the university closed the division of geriatrics. “The university said that it simply could not sustain the financial losses,” Boult said from Baltimore, where he had moved to join the Johns Hopkins Bloomberg School of Public Health. On average, in Boult’s study, the geriatric services cost the hospital $1,350 more per person than the savings they produced, and Medicare, the insurer for the elderly, does not cover that cost. It’s a strange double standard. No one insists that a $25,000 pacemaker or a coronary-artery stent save money for insurers. It just has to maybe do people some good. Meanwhile, the twenty-plus members of the proven geriatrics team at the University of Minnesota had to find new jobs. Scores of medical centers across the country have shrunk or closed their geriatrics units. Many of Boult’s colleagues no longer advertise their geriatric training for fear that they’ll get too many elderly patients. “Economically, it has become too difficult,” Boult said. But the dismal finances of geriatrics are only a symptom of a deeper reality: people have not insisted on a change in priorities. We all like new medical gizmos and demand that policy makers ensure they are paid for. We want doctors who promise to fix things. But geriatricians? Who clamors for geriatricians? What geriatricians do—bolster our resilience in old age, our capacity to weather what comes—is both difficult and unappealingly limited. It requires attention to the body and its alterations. It requires vigilance over nutrition, medications, and living situations. And it requires each of us to contemplate the unfixables in our life, the decline we will unavoidably face, in order to make the small changes necessary to reshape it. When the prevailing fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not. * * * FOR FELIX SILVERSTONE, managing aging and its distressing realities was the work of a lifetime. He was a national leader in geriatrics for five decades. But when I met him he was himself eighty-seven years old. He could feel his own mind and body wearing down, and much of what he spent his career studying was no longer at a remove from him. Felix had been fortunate. He didn’t have to stop working, even after he suffered a heart attack in his sixties that cost him half his heart function; nor was he stopped by a near cardiac arrest at the age of seventy-nine. “One evening, sitting at home, I suddenly became aware of palpitations,” he told me. “I was just reading, and a few minutes later I became short of breath. A little bit after that, I began to feel heavy in the chest. I took my pulse, and it was over two hundred.” He is the sort of person who, in the midst of chest pain, would take the opportunity to examine his own pulse. “My wife and I had a little discussion about whether or not to call an ambulance. We decided to call.” When Felix got to the hospital, the doctors had to shock him to bring his heart back. He’d had ventricular tachycardia, and an automatic defibrillator was implanted in his chest. Within a few weeks, he felt well again, and his doctor cleared him to return to work full time. He stayed in medical practice after the attack, multiple hernia repairs, gallbladder surgery, arthritis that all but ended his avid piano playing, compression fractures of his aging spine that stole three full inches of his five-foot-seven-inch height, and hearing loss. “I switched to an electronic stethoscope,” he said. “They’re a nuisance, but they’re very good.” Finally, at eighty-two, he had to retire. The problem wasn’t his health; it was that of his wife, Bella. They’d been married for more than sixty years. Felix had met Bella when he was an intern and she was a dietitian at Kings County Hospital, in Brooklyn. They brought up two sons in Flatbush. When the boys left home, Bella got her teaching certificate and began working with children who had learning disabilities. In her seventies, however, retinal disease diminished her vision, and she had to stop working. A decade later, she’d become almost completely blind. Felix no longer felt safe leaving her at home alone, and in 2001 he gave up his practice. They moved to Orchard Cove, a retirement community in Canton, Massachusetts, outside Boston, where they could be closer to their sons. “I didn’t think I would survive the change,” Felix said. He’d observed in his patients how difficult the transitions of age were. Examining his last patient, packing up his home, he felt that he was about to die. “I was taking apart my life as well as the house,” he recalled. “It was terrible.” We were sitting in a library off Orchard Cove’s main lobby. There was light streaming through a picture window, tasteful art on the walls, white upholstered Federal-style armchairs. It was like a nice hotel, only with no one under seventy-five walking around. Felix and Bella had a two-bedroom apartment with forest views and plenty of space. In the living room, Felix had a grand piano and, at his desk, piles of medical journals that he still subscribed to—“for my soul,” he said. Theirs was an independent-living unit. It came with housekeeping, linen changes, and dinner each evening. When they needed to, they could upgrade to assisted living, which provides three prepared meals and up to an hour with a personal-care assistant each day. This was not the average retirement community, but even in an average one rent runs $32,000 a year. Entry fees are typically $60,000 to $120,000 on top of that. Meanwhile, the median income of people eighty and older is only about $15,000. More than half of the elderly living in long-term-care facilities run through their entire savings and have to go on government assistance—welfare—in order to afford it. Ultimately, the average American spends a year or more of old age disabled and living in a nursing home (at more than five times the yearly cost of independent living), which is a destination Felix was desperately hoping to avoid. He was trying to note the changes he experienced objectively, like the geriatrician he is. He noticed that his skin had dried out. His sense of smell was diminished. His night vision had become poor, and he tired easily. He had begun to lose teeth. But he took what measures he could. He used lotion to avoid skin cracks; he protected himself from the heat; he got on an exercise bike three times a week; he saw a dentist twice a year. He was most concerned about the changes in his brain. “I can’t think as clearly as I used to,” he said. “I used to be able to read the New York Times in half an hour. Now it takes me an hour and a half.” Even then, he wasn’t sure that he understood as much as he did before, and his memory gave him trouble. “If I go back and look at what I’ve read, I recognize that I went through it, but sometimes I don’t really remember it,” he said. “It’s a matter of short-term registration. It’s hard to get the signal in and have it stay put.” He made use of methods that he once taught his patients. “I try to deliberately focus on what I’m doing, rather than do it automatically,” he told me. “I haven’t lost the automaticity of action, but I can’t rely on it the way I used to. For example, I can’t think about something else and get dressed and be sure I’ve gotten all the way dressed.” He recognized that the strategy of trying to be more deliberate didn’t always work, and he sometimes told me the same story twice in a conversation. The lines of thought in his mind would fall into well-worn grooves and, however hard he tried to put them onto a new path, sometimes they resisted. Felix’s knowledge as a geriatrician forced him to recognize his decline, but it didn’t make it easier to accept. “I get blue occasionally,” he said. “I think I have recurring episodes of depression. They are not enough to disable me, but they are…” He paused to find the right word. “They are uncomfortable.” What buoyed him, despite his limitations, was having a purpose. It was the same purpose, he said, that sustained him in medicine: to be of service, in some way, to those around him. He had been in Orchard Cove for only a few months before he was helping to steer a committee to improve the health care services there. He formed a journal-reading club for retired physicians. He even guided a young geriatrician through her first independent research study—a survey of the residents’ attitudes toward Do Not Resuscitate orders. More important was the responsibility that he felt for his children and grandchildren—and most of all for Bella. Her blindness and memory troubles had made her deeply dependent. Without him, she would have been in a nursing home. He helped her dress and administered her medicines. He made her breakfast and lunch. He took her on walks and to doctor’s appointments. “She is my purpose now,” he said. Bella didn’t always like his way of doing things. “We argue constantly—we’re at each other about a lot of things,” Felix said. “But we’re also very forgiving.” He did not feel this responsibility to be a burden. With the narrowing of his own life, his ability to look after Bella had become his main source of self-worth. “I am exclusively her caregiver,” he said. “I am glad to be.” And this role had heightened his sense that he must be attentive to the changes in his own capabilities; he would be no good to her if he wasn’t honest with himself about his own limitations. One evening, Felix invited me to dinner. The formal dining hall was restaurant-like, with reserved seating, table service, and jackets required. I was wearing my white hospital coat and had to borrow a navy blazer from the ma?tre d’ in order to be seated. Felix, in a brown suit and a stone-colored oxford shirt, gave his arm to Bella, who wore a blue-flowered knee-length dress that he’d picked out for her, and guided her to the table. She was amiable and chatty and had youthful-seeming eyes. But once she’d been seated, she couldn’t find the plate in front of her, let alone the menu. Felix ordered for her: wild-rice soup, an omelette, mashed potatoes, and mashed cauliflower. “No salt,” he instructed the waiter; she had high blood pressure. He ordered salmon and mashed potatoes for himself. I had the soup and a London broil. When the food arrived, Felix told Bella where she could find the different items on her plate by the hands of a clock. He put a fork in her hand. Then he turned to his own meal. Both made a point of chewing slowly. She was the first to choke. It was the omelette. Her eyes watered. She began to cough. Felix guided her water glass to her mouth. She took a drink and managed to get the omelette down. “As you get older, the lordosis of your spine tips your head forward,” he said to me. “So when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up: you’ll choke once in a while. The problem is common in the elderly. Listen.” I realized that I could hear someone in the dining room choking on his food every minute or so. Felix turned to Bella. “You have to eat looking down, sweetie,” he said. A couple of bites later, though, he himself was choking. It was the salmon. He began coughing. He turned red. Finally, he was able to cough up the bite. It took a minute for him to catch his breath. “Didn’t follow my own advice,” he said. Felix Silverstone was, without question, up against the debilities of his years. Once, it would have been remarkable simply to have lived to see eighty-seven. Now the remarkable thing was the control he’d maintained over his life. When he started in geriatric practice, it was almost inconceivable that an eighty-seven-year-old with his history of health problems could live independently, care for his disabled wife, and continue to contribute to research. Partly, he had been lucky. His memory, for example, had not deteriorated badly. But he had also managed his old age well. His goal has been modest: to have as decent a life as medical knowledge and the limits of his body would allow. So he saved and did not retire early and was therefore not in financial straits. He kept his social contacts and avoided isolation. He monitored his bones and teeth and weight. And he made sure to find a doctor who had the geriatric skills to help him hold on to an independent life. * * * I ASKED CHAD Boult, the geriatrics professor, what could be done to ensure that there are enough geriatricians for the surging elderly population. “Nothing,” he said. “It’s too late.” Creating geriatric specialists takes time, and we already have far too few. In a year, fewer than three hundred doctors will complete geriatrics training in the United States, not nearly enough to replace the geriatricians going into retirement, let alone meet the needs of the next decade. Geriatric psychiatrists, nurses, and social workers are equally needed, and in no better supply. The situation in countries outside the United States appears to be little different. In many, it is worse. Yet Boult believes that we still have time for another strategy: he would direct geriatricians toward training all primary care doctors and nurses in caring for the very old, instead of providing the care themselves. Even this is a tall order—97 percent of medical students take no course in geriatrics, and the strategy requires that the nation pay geriatric specialists to teach rather than to provide patient care. But if the will is there, Boult estimates that it would be possible to establish courses in every medical school, nursing school, school of social work, and internal-medicine training program within a decade. “We’ve got to do something,” he said. “Life for older people can be better than it is today.” * * * “I CAN STILL drive, you know,” Felix Silverstone said to me after our dinner together. “I’m a very good driver.” He had to run an errand to refill Bella’s prescriptions in Stoughton, a few miles away, and I asked if I could come along. He had a ten-year-old gold Toyota Camry with automatic transmission and 39,000 miles on the odometer. It was pristine, inside and out. He backed out of a narrow parking space and zipped out of the garage. His hands did not shake. Taking the streets of Canton at dusk on a new-moon night, he brought the car to an even stop at the red lights, signaled when he was supposed to, took turns without a hitch. I was, I admit, braced for disaster. The risk of a fatal car crash with a driver who’s eighty-five or older is more than three times higher than it is with a teenage driver. The very old are the highest-risk drivers on the road. I thought of Alice’s wreck and considered how lucky she was that no child had been in her neighbor’s yard. A few months earlier, in Los Angeles, George Weller was convicted of manslaughter after he confused the accelerator with the brake pedal and plowed his Buick into a crowd of shoppers at the Santa Monica Farmers Market. Ten people were killed, and more than sixty were injured. He was eighty-six. But Felix showed no difficulties. At one point during our drive, poorly marked road construction at an intersection channeled our line of cars almost directly into oncoming traffic. Felix corrected course swiftly, pulling over into the proper lane. There was no saying how much longer he would be able to count on his driving ability. Someday, the hour would come when he would have to give up his keys. At that moment, though, he wasn’t concerned; he was glad simply to be on the road. The evening traffic was thin as he turned onto Route 138. He brought the Camry to a tick over the 45-mile-per-hour speed limit. He had his window rolled down and his elbow on the sash. The air was clear and cool, and we listened to the sound of the wheels on the pavement. “The night is lovely, isn’t it?” he said. 3 • Dependence It is not death that the very old tell me they fear. It is what happens short of death—losing their hearing, their memory, their best friends, their way of life. As Felix put it to me, “Old age is a continuous series of losses.” Philip Roth put it more bitterly in his novel Everyman: “Old age is not a battle. Old age is a massacre.” With luck and fastidiousness—eating well, exercising, keeping our blood pressure under control, getting medical help when we need it—people can often live and manage a very long time. But eventually the losses accumulate to the point where life’s daily requirements become more than we can physically or mentally manage on our own. As fewer of us are struck dead out of the blue, most of us will spend significant periods of our lives too reduced and debilitated to live independently. We do not like to think about this eventuality. As a result, most of us are unprepared for it. We rarely pay more than glancing attention to how we will live when we need help until it’s too late to do much about it. When Felix came to this crossroads, the orthopedic shoe to drop wasn’t his. It was Bella’s. Year by year, I witnessed the progression in her difficulties. Felix remained in astonishingly good health right into his nineties. He had no medical crises and maintained his weekly exercise regimen. He continued to teach chaplaincy students about geriatrics and to serve on Orchard Cove’s health committee. He didn’t even have to stop driving. But Bella was fading. She lost her vision completely. Her hearing became poor. Her memory became markedly impaired. When we had dinner, she had to be reminded more than once that I was sitting across from her. She and Felix felt the sorrows of their losses but also the pleasures of what they still had. Although she might not have been able to remember me or others she didn’t know too well, she enjoyed company and conversation and sought both out. Moreover, she and Felix still had their own, private, decades-long conversation that had never stopped. He found great purpose in caring for her, and she, likewise, found great meaning in being there for him. The physical presence of each other gave them comfort. He dressed her, bathed her, helped feed her. When they walked, they held hands. At night, they lay in bed in each other’s arms, awake and nestling for a while, before finally drifting off to sleep. Those moments, Felix said, remained among their most cherished. He felt they knew each other, and loved each other, more than at any time in their nearly seventy years together. One day, however, they had an experience that revealed just how fragile their life had become. Bella developed a cold, causing fluid to accumulate in her ears. An eardrum ruptured. And with that she became totally deaf. That was all it took to sever the thread between them. With her blindness and memory problems, the hearing loss made it impossible for Felix to achieve any kind of communication with her. He tried drawing out letters on the palm of her hand but she couldn’t make them out. Even the simplest matters—getting her dressed, for instance—became a nightmare of confusion for her. Without sensory grounding, she lost track of time of day. She grew severely confused, at times delusional and agitated. He couldn’t take care of her. He became exhausted from stress and lack of sleep. He didn’t know what to do, but there was a system for such situations. The people at the residence proposed transferring her to a skilled nursing unit—a nursing home floor. He couldn’t bear the thought of it. No, he said. She needed to stay at home with him. Before the issue was forced, they got a reprieve. Two and a half weeks into the ordeal, Bella’s right eardrum mended and, although the hearing in her left ear was lost permanently, the hearing in her right ear came back. “Our communication is more difficult,” Felix said. “But at least it is possible.” I asked what he would do if the hearing in her right ear went again or if there were some other such catastrophe, and he told me he didn’t know. “I’m in dread of what would happen if she becomes too hard for me to care for,” he said. “I try not to think too far ahead. I don’t think about next year. It’s too depressing. I just think about next week.” It’s the route people the world over take, and that is understandable. But it tends to backfire. Eventually, the crisis they dreaded arrived. They were walking together when, suddenly, Bella fell. He wasn’t sure what had happened. They’d been walking slowly. The ground was flat. He’d had her by the arm. But she went down in a heap and snapped the fibula in both her legs—the long, thin outer bone that runs from knee to ankle. The emergency room doctors had to cast each of her limbs to above the knee. What Felix feared most had happened. Her needs became massively more than he could handle. Bella was forced to move to the nursing home floor, where she could have round-the-clock aides and nurses looking after her. You might think that this would have been a relief for both Bella and Felix, lifting all kinds of burdens of physical care from them. But the experience was more complicated than that. On the one hand, the staff members were nothing but professional. They took over most of the tasks Felix had long managed so laboriously—the bathing, toileting, dressing, and all the other routine needs of a person who has become severely disabled. They freed him to spend his time as he wished, whether with Bella or on his own. But for all the staff members’ efforts, Felix and Bella could find their presence exasperating. Some tended to Bella more as a patient than as a person. She had a certain way she liked her hair brushed, for instance, but no one asked or figured it out. Felix had worked out the best method to cut up her food so she could swallow it without difficulty, how to position her so she was most comfortable, how to dress her the way she preferred. But no matter how much he tried to show the staff, many of them did not see the point. Sometimes, in exasperation, he’d give up and simply redo whatever they had done, causing conflict and resentment. “We were getting in each other’s way,” Felix said. He worried too that the unfamiliar surroundings were making Bella confused. After a few days, he decided to move her back home. He’d just have to figure out how to deal with her. Their apartment was only a floor away. But somehow that made all the difference. Exactly why can be hard to pinpoint. Felix still ended up hiring an around-the-clock staff of nurses and aides. And the remaining six weeks until the casts could come off were physically exhausting for him. Yet he was relieved. He and Bella felt more control over her life. She was in her own place, in her own bed, with him beside her. And that mattered tremendously to him. Because four days after the casts came off, four days after she’d begun walking again, she died. They’d sat down to lunch. She turned to him and said, “I don’t feel well.” Then she collapsed. An ambulance whisked her to the local hospital. He didn’t want to slow the medics down. So he let them go and followed after in his car. She died in the short time between her arrival and his. When I saw him three months later, he was still despondent. “I feel as if a part of my body is missing. I feel as if I have been dismembered,” he told me. His voice cracked and his eyes were rimmed red. He had one great solace, however: that she hadn’t suffered, that she’d got to spend her last few weeks in peace at home in the warmth of their long love, instead of up on a nursing floor, a lost and disoriented patient. * * * ALICE HOBSON HAD something very much like the same dread of leaving her home. It was the one place where she felt she belonged and remained in charge of her life. But after the incident with the men who had victimized her, it was apparent that she wasn’t safe living on her own anymore. My father-in-law organized a few visits to senior living residences for her. “She didn’t care for this process,” Jim said, but she reconciled herself to it. He was determined to find a place she would like and thrive in. But it was not to be. As I watched the aftermath, I gradually began to understand the reasons why—and they were reasons that bring into question our entire system of care for the dependent and debilitated. Jim looked for a place that was within a reasonable driving distance for the family and within a price range she could afford with the proceeds of selling her house. He also wanted a community that offered a “continuum of care”—much like Orchard Cove, where I visited Felix and Bella—with apartments for independent living and a floor with the around-the-clock nursing capabilities that she might someday need. He came up with a variety of places for them to visit—nearer ones and farther ones, for-profit and not-for-profit. The place Alice ultimately chose was a high-rise senior-living complex that I will call Longwood House, a nonprofit facility affiliated with the Episcopal Church. Some of her friends from church lived there. The drive to and from Jim’s home was barely ten minutes. The community was active and thriving. To Alice and the family, it had by far the greatest appeal. “Most of the others were too commercial,” Jim said. She moved in during the fall of 1992. Her one-bedroom independent-living apartment was more spacious than I’d expected. It had a full kitchen, enough room for her dining set, and plenty of light. My mother-in law, Nan, made sure it got a fresh coat of paint and arranged for a decorator Alice had used before to help place furniture and hang pictures. “It means something when you can move in and see all your things in their own places—your own silver in your kitchen drawer,” Nan said. But when I saw Alice a few weeks after her move, she didn’t seem at all happy or adjusted. Never one to complain, she didn’t say anything angry or sad or bitter, but she was withdrawn in a way I hadn’t seen before. She remained recognizably herself, but the light had gone out from behind her eyes. At first I thought that this had to do with the loss of her car and the freedom that came with it. When she moved into Longwood House, she’d brought her Chevy Impala and fully intended to keep driving. But on her very first day there, when she went to take the car out for some errands, it was gone. She called the police and reported it stolen. An officer arrived, took a description, and promised an investigation. A while later, Jim arrived, and, on a hunch, looked in the Giant Food store parking lot next door. There it was. She had got confused and parked in the wrong lot without realizing it. Mortified, she gave up driving for good. In one day, she lost her car as well as her home. But there seemed to be more to her sense of loss and unhappiness. She had a kitchen but stopped cooking. She took her meals in the Longwood House dining room with everyone else but ate little, lost weight, and didn’t seem to like having the company. She avoided organized group activities, even the ones she might have enjoyed—a sewing circle like the one she’d had at her church, a book group, gym and fitness classes, trips to the Kennedy Center. The community offered opportunities to organize activities of your own if you didn’t like what was on offer. But she stuck to herself. We thought she was depressed. Jim and Nan took her to see a doctor, who put her on medication. It didn’t help. Somewhere along the seven-mile drive between the house she’d given up on Greencastle Street and Longwood House, her life fundamentally changed in ways she did not want but could do nothing about. * * * THE IDEA OF being unhappy in a place as comfortable as Longwood House would have seemed laughable at one time. In 1913, Mabel Nassau, a Columbia University graduate student, conducted a neighborhood study of the living conditions of one hundred elderly people in Greenwich Village—sixty-five women and thirty-five men. In this era before pensions and Social Security, all were poor. Only twenty-seven were able to support themselves—living off savings, taking in lodgers, or doing odd jobs like selling newspapers, cleaning homes, mending umbrellas. Most were too ill or debilitated to work. One woman, for instance, whom Nassau called Mrs. C., was a sixty-two-year-old widow who’d made just enough as a domestic servant to afford a small back room with an oil stove in a rooming house. Illness had recently ended her work, however, and she now had severe leg swelling with varicose veins that left her bedbound. Miss S. was “unusually sick” and had a seventy-two-year-old brother with diabetes who, in this era before insulin treatment, was fast becoming crippled and emaciated as the disease killed him. Mr. M. was a sixty-seven-year-old Irish former longshoreman who’d been left disabled by a paralytic stroke. A large number had become simply “feeble,” by which Nassau seemed to mean that they were too senile to manage for themselves. Unless family could take such people in, they had virtually no options left except a poorhouse, or almshouse, as it was often called. These institutions went back centuries in Europe and the United States. If you were elderly and in need of help but did not have a child or independent wealth to fall back on, a poorhouse was your only source of shelter. Poorhouses were grim, odious places to be incarcerated—and that was the telling term used at the time. They housed poor of all types—elderly paupers, out-of-luck immigrants, young drunks, the mentally ill—and their function was to put the “inmates” to work for their presumed intemperance and moral turpitude. Supervisors usually treated elderly paupers leniently in work assignments, but they were inmates like the rest. Husbands and wives were separated. Basic physical care was lacking. Filth and dilapidation were the norm. A 1912 report from the Illinois State Charities Commission described one county’s poorhouse as “unfit to decently house animals.” The men and women lived without any attempt at classification by age or needs in bare ten-by-twelve-foot rooms infested with bedbugs. “Rats and mice overrun the place.… Flies swarm [the] food.… There are no bathtubs.” A 1909 Virginia report described elderly people dying untended, receiving inadequate nutrition and care, and contracting tuberculosis from uncontrolled contagion. Funds were chronically inadequate for disabled care. In one case, the report noted, a warden, faced with a woman who tended to wander off and no staff to mind her, made her carry a twenty-eight-pound ball and chain. Nothing provoked greater terror for the aged than the prospect of such institutions. Nonetheless, by the 1920s and 1930s, when Alice and Richmond Hobson were young, two-thirds of poorhouse residents were elderly. Gilded Age prosperity had sparked embarrassment about these conditions. Then the Great Depression sparked a nationwide protest movement. Elderly middle-class people who’d worked and saved all their lives found their savings wiped out. In 1935, with the passage of Social Security, the United States joined Europe in creating a system of national pensions. Suddenly a widow’s future was secure, and retirement, once the exclusive provenance of the rich, became a mass phenomenon. In time, poorhouses passed from memory in the industrialized world, but they persist elsewhere. In developing countries, they have become common, because economic growth is breaking up the extended family without yet producing the affluence to protect the elderly from poverty and neglect. In India, I have noticed that the existence of such places is often unacknowledged, but on a recent visit to New Delhi I readily found examples. Their appearance seemed straight out of Dickens—or those old state reports. The Guru Vishram Vridh ashram, for instance, is a charity-run old age home in a slum on the south edge of New Delhi, where open sewage ran in the streets and emaciated dogs rummaged in piles of trash. The home is a converted warehouse—a vast, open room with scores of disabled elderly people on cots and floor mattresses pushed up against one another like a large sheet of postage stamps. The proprietor, G. P. Bhagat, who appeared to be in his forties, was clean-cut and professional looking, with a cell phone that rang every two minutes. He said he’d been called by God to open the place eight years before and subsisted on donations. He said he never turned anyone away as long as he had an open bed. About half of the residents were deposited there by retirement homes and hospitals if they couldn’t pay their bills. The other half were found in the streets and parks by volunteers or the police. All suffered from a combination of debility and poverty. The place had more than a hundred people when I visited. The youngest was sixty and the oldest past a century. Those on the first floor had only “moderate” needs. Among them, I met a Sikh man crawling awkwardly along the ground, in a squat, like a slow-moving frog—hands-feet, hands-feet, hands-feet. He said he used to own an electrical shop in an upscale section of New Delhi. His daughter became an accountant, his son a software engineer. Two years ago something happened to him—he described chest pain and what sounded like a series of strokes. He spent two and a half months in the hospital, paralyzed. The bills rose. His family stopped visiting. Eventually the hospital dropped him off here. Bhagat said he sent a message to the family through the police saying the man would like to come home. They denied knowing him. Up a narrow staircase was the second-floor ward for patients with dementia and other severe disabilities. An old man stood by a wall wailing out-of-tune songs at the top of his lungs. Next to him a woman with white, cataractal eyes muttered to herself. Several staff members worked their way through the residents, feeding them and keeping them clean the best they could. The din and the smell of urine were overpowering. I tried to talk to a couple of the residents through my translator, but they were too confused to answer questions. A deaf and blind woman lying on a mattress nearby was shouting a few words over and over again. I asked the translator what she was saying. The translator shook her head—the words made no sense—and then she bolted down the stairs. It was too much for her. It was as close to a vision of hell as I’ve ever experienced. “These people are on the last stage of their journey,” Bhagat said, looking out upon the mass of bodies. “But I can’t provide the kind of facility they really require.” In the course of Alice’s lifetime, the industrialized world’s elderly have escaped the threat of such a fate. Prosperity has enabled even the poor to expect nursing homes with square meals, professional health services, physical therapy, and bingo. They’ve eased debility and old age for millions and made proper care and safety a norm to an extent that the inmates of poorhouses could not imagine. Yet still, most consider modern old age homes frightening, desolate, even odious places to spend the last phase of one’s life. We need and desire something more. * * * LONGWOOD HOUSE SEEMINGLY had everything going for it. The facility was up to date, with top ratings for safety and care. Alice’s quarters enabled her to have the comforts of her old home in a safer, more manageable situation. The arrangements were tremendously reassuring for her children and extended family. But they weren’t for Alice. She never got used to being there or accepted it. No matter what the staff or our family did for her, she grew only more miserable. I asked her about this. But she couldn’t put her finger on what made her unhappy. The most common complaint she made is one I’ve heard often from nursing home residents I’ve met: “It just isn’t home.” To Alice, Longwood House was a mere facsimile of home. And having a place that genuinely feels like your home can seem as essential to a person as water to a fish. A few years ago, I read about the case of Harry Truman, an eighty-three-year-old man who, in March 1980, refused to budge from his home at the foot of Mount Saint Helens near Olympia, Washington, when the volcano began to steam and rumble. A former World War I pilot and Prohibition-era bootlegger, he’d owned his lodge on Spirit Lake for more than half a century. Five years earlier, he’d been widowed. So now it was just him and his sixteen cats on his fifty-four acres of property beneath the mountain. Three years earlier, he’d fallen off the lodge roof shoveling snow and broken his leg. The doctor told him he was “a damn fool” to be working up there at his age. “Damn it!” Truman shot back. “I’m eighty years old and at eighty, I have the right to make up my mind and do what I want to do.” As eruption threatened, the authorities told everyone living in the vicinity to clear out. But Truman wasn’t going anywhere. For more than two months, the volcano smoldered. Authorities extended the evacuation zone to ten miles around the mountain. Truman stubbornly remained. He didn’t believe the scientists, with their uncertain and sometimes conflicting reports. He worried his lodge would be looted and vandalized, as another lodge on Spirit Lake was. And regardless, this home was his life. “If this place is gonna go, I want to go with it,” he said. “’Cause if I lost it, it would kill me in a week anyway.” He attracted reporters with his straight-talking, curmudgeonly way, holding forth with a green John Deere cap on his head and a tall glass of bourbon and Coke in his hand. The local police thought about arresting him for his own good but decided not to, given his age and the bad publicity they’d have to endure. They offered to bring him out every chance they got. He steadfastly refused. He told a friend, “If I die tomorrow, I’ve had a damn good life. I’ve done everything I could do, and I’ve done everything I ever wanted to do.” The blast came at 8:40 a.m. on May 18, 1980, with the force of an atomic bomb. The entire lake disappeared under the massive lava flow, burying Truman and his cats and his home with it. In the aftermath, he became an icon—the old man who had stayed in his house, taken his chances, and lived life on his own terms in an era when that possibility seemed to have all but disappeared. The people of nearby Castlerock constructed a memorial to him at the town’s entrance that still stands, and there was a television movie starring Art Carney. Alice wasn’t facing a volcano, but she might as well have been. Giving up her home on Greencastle Street meant giving up the life she had built for herself over decades. The things that made Longwood House so much safer and more manageable than the house were precisely what made it hard for her to endure. Her apartment might have been called “independent living,” but it involved the imposition of more structure and supervision than she’d ever had to deal with before. Aides watched her diet. Nurses monitored her health. They observed her growing unsteadiness and made her use a walker. This was reassuring for Alice’s children, but she didn’t like being nannied or controlled. And the regulation of her life only increased with time. When the staff became concerned that she was missing doses of her medications, they informed her that unless she kept her medications with the nurses and came down to their station twice a day to take them under direct supervision, she would have to move out of independent living to the nursing home wing. Jim and Nan hired a part-time aide named Mary to help Alice comply, to give her some company, and to stave off the day she would have to transfer. She liked Mary. But having her hanging around the apartment for hours on end, often with little to do, only made the situation more depressing. For Alice, it must have felt as if she had crossed into an alien land that she would never be allowed to leave. The border guards were friendly and cheerful enough. They promised her a nice place to live where she’d be well taken care of. But she didn’t really want anyone to take care of her; she just wanted to live a life of her own. And those cheerful border guards had taken her keys and her passport. With her home went her control. People saw Harry Truman as a hero. There was never going to be a Longwood House for Harry Truman of Spirit Lake, and Alice Hobson of Arlington, Virginia, didn’t want there to be one for her either. * * * HOW DID WE wind up in a world where the only choices for the very old seem to be either going down with the volcano or yielding all control over our lives? To understand what happened, you have to trace the story of how we replaced the poorhouse with the kinds of places we have today—and it turns out to be a medical story. Our old age homes didn’t develop out of a desire to give the frail elderly better lives than they’d had in those dismal places. We didn’t look around and say to ourselves, “You know, there’s this phase of people’s lives in which they can’t really cope on their own, and we ought to find a way to make it manageable.” No, instead we said, “This looks like a medical problem. Let’s put these people in the hospital. Maybe the doctors can figure something out.” The modern nursing home developed from there, more or less by accident. In the middle part of the twentieth century, medicine was undergoing a rapid and historic transformation. Before that time, if you fell seriously ill, doctors usually tended to you in your own bed. The function of hospitals was mainly custodial. As the great physician-writer Lewis Thomas observed, describing his internship at Boston City Hospital in 1937, “If being in a hospital bed made a difference, it was mostly the difference produced by warmth, shelter, and food, and attentive, friendly care, and the matchless skill of the nurses in providing these things. Whether you survived or not depended on the natural history of the disease itself. Medicine made little or no difference.” From World War II onward, the picture shifted radically. Sulfa, penicillin, and then numerous other antibiotics became available for treating infections. Drugs to control blood pressure and treat hormonal imbalances were discovered. Breakthroughs in everything from heart surgery to artificial respirators to kidney transplantation became commonplace. Doctors became heroes, and the hospital transformed from a symbol of sickness and despondency to a place of hope and cure. Communities could not build hospitals fast enough. In America, in 1946, Congress passed the Hill-Burton Act, which provided massive amounts of government funds for hospital construction. Two decades later the program had financed more than nine thousand new medical facilities across the country. For the first time, most people had a hospital nearby, and this became true across the industrialized world. The magnitude of this transformation is impossible to overstate. For most of our species’ existence, people were fundamentally on their own with the sufferings of their body. They depended on nature and chance and the ministry of family and religion. Medicine was just another a tool you could try, no different from a healing ritual or a family remedy and no more effective. But as medicine became more powerful, the modern hospital brought a different idea. Here was a place where you could go saying, “Cure me.” You checked in and gave over every part of your life to doctors and nurses: what you wore, what you ate, what went into the different parts of your body and when. It wasn’t always pleasant, but, for a rapidly expanding range of problems, it produced unprecedented results. Hospitals learned how to eliminate infections, remove cancerous tumors, reconstruct shattered bones. They could fix hernias and heart valves and hemorrhaging stomach ulcers. They became the normal place for people to go with their bodily troubles, including the elderly. Meanwhile, policy planners had assumed that establishing a pension system would end poorhouses, but the problem did not go away. In America, in the years following the passage of the Social Security Act of 1935, the number of elderly in poorhouses refused to drop. States moved to close them but found they could not. The reason old people wound up in poorhouses, it turned out, was not just that they didn’t have money to pay for a home. They were there because they’d become too frail, sick, feeble, senile, or broken down to take care of themselves anymore, and they had nowhere else to turn for help. Pensions provided a way of allowing the elderly to manage independently as long as possible in their retirement years. But pensions hadn’t provided a plan for that final, infirm stage of mortal life. As hospitals sprang up, they became a comparatively more attractive place to put the infirm. That was finally what brought the poorhouses to empty out. One by one through the 1950s, the poorhouses closed, responsibility for those who’d been classified as elderly “paupers” was transferred to departments of welfare, and the sick and disabled were put in hospitals. But hospitals couldn’t solve the debilities of chronic illness and advancing age, and they began to fill up with people who had nowhere to go. The hospitals lobbied the government for help, and in 1954 lawmakers provided funding to enable them to build separate custodial units for patients needing an extended period of “recovery.” That was the beginning of the modern nursing home. They were never created to help people facing dependency in old age. They were created to clear out hospital beds—which is why they were called “nursing” homes. This has been the persistent pattern of how modern society has dealt with old age. The systems we’ve devised were almost always designed to solve some other problem. As one scholar put it, describing the history of nursing homes from the perspective of the elderly “is like describing the opening of the American West from the perspective of the mules; they were certainly there, and the epochal events were certainly critical to the mules, but hardly anyone was paying very much attention to them at the time.” The next major spur to American nursing home growth was similarly unintentional. When Medicare, America’s health insurance system for the aged and disabled, passed in 1965, the law specified that it would pay only for care in facilities that met basic health and safety standards. A significant number of hospitals, especially in the South, couldn’t meet those standards. Policy makers feared a major backlash from elderly patients with Medicare cards being turned away from their local hospital. So the Bureau of Health Insurance invented the concept of “substantial compliance”—if the hospital came “close” to meeting the standards and aimed to improve, it would be approved. The category was a complete fabrication with no legal basis, though it solved a problem without major harm—virtually all of the hospitals did improve. But the bureau’s ruling gave an opening to nursing homes, few of which met even minimum federal standards such as having a nurse on-site or fire protections in place. Thousands of them, asserting that they were in “substantial compliance,” were approved, and the number of nursing homes exploded—by 1970, some thirteen thousand of them had been built—and so did reports of neglect and mistreatment. That year in Marietta, Ohio, the next county over from my hometown, a nursing home fire trapped and killed thirty-two residents. In Baltimore, a Salmonella epidemic in a nursing home claimed thirty-six lives. With time, regulations were tightened. The health and safety problems were finally addressed. Nursing homes are no longer firetraps. But the core problem persists. This place where half of us will typically spend a year or more of our lives was never truly made for us. * * * ONE MORNING IN late 1993, Alice had a fall while alone in her apartment. She wasn’t found until many hours later when Nan, who was puzzled at not being able to reach her by phone, sent Jim to investigate. He discovered Alice laid out beside the living room couch, nearly unconscious. At the hospital, the medical team gave her intravenous fluids and a series of tests and X-rays. They found no broken bones or head injury. Everything seemed okay. But they also found no explanation for her fall beyond general frailty. When she returned to Longwood House, she was encouraged to move to the skilled nursing floor. She resisted vehemently. She did not want to go. The staff relented. They checked her more frequently. Mary increased the hours she spent looking after her. But before long, Jim got a call that Alice had fallen again. It was a bad fall, they said. She’d been taken by ambulance to a hospital. By the time he got there, she had already been wheeled into surgery. X-rays showed she’d broken her hip—the top of her femur had snapped like a glass stem. The orthopedic surgeons repaired the fracture with a couple of long metal nails. This time, she came back to Longwood House in a wheelchair and needed help with virtually all of her everyday activities—using the toilet, bathing, dressing. Alice was left with no choice but to move into the skilled nursing unit. The hope, they told her, was that, with physical therapy, she’d learn to walk again and return to her apartment. But she never did. From then on, she was confined to a wheelchair and the rigidity of nursing home life. All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lived with whomever they said she had to. There was a succession of roommates, never chosen with her input and all with cognitive impairments. Some were quiet. One kept her up at night. She felt incarcerated, like she was in prison for being old. The sociologist Erving Goffman noted the likeness between prisons and nursing homes half a century ago in his book Asylums. They were, along with military training camps, orphanages, and mental hospitals, “total institutions”—places largely cut off from wider society. “A basic social arrangement in modern society is that the individual tends to sleep, play, and work in different places, with different co-participants, under different authorities, and without an over-all rational plan,” he wrote. By contrast, total institutions break down the barriers separating our spheres of life in specific ways that he enumerated: First, all aspects of life are conducted in the same place and under the same central authority. Second, each phase of the member’s daily activity is carried on in the immediate company of a large batch of others, all of whom are treated alike and required to do the same thing together. Third, all phases of the day’s activities are tightly scheduled, with one activity leading at a prearranged time into the next, the whole sequence of activities being imposed from above by a system of explicit formal rulings and a body of officials. Finally, the various enforced activities are brought together into a single plan purportedly designed to fulfill the official aims of the institution. In a nursing home, the official aim of the institution is caring, but the idea of caring that had evolved didn’t bear any meaningful resemblance to what Alice would call living. She was hardly alone in feeling this way. I once met an eighty-nine-year-old woman who had, of her own volition, checked herself into a Boston nursing home. Usually, it’s the children who push for a change, but in this case she was the one who did. She had congestive heart failure, disabling arthritis, and after a series of falls she felt she had little choice but to leave her condominium in Delray Beach, Florida. “I fell twice in one week, and I told my daughter I don’t belong at home anymore,” she said. She picked the facility herself. It had excellent ratings and nice staff, and her daughter lived nearby. She had moved in the month before I met her. She told me she was glad to be in a safe place—if there’s anything a decent nursing home is built for, it is safety. But she was wretchedly unhappy. The trouble was that she expected more from life than safety. “I know I can’t do what I used to,” she said, “but this feels like a hospital, not a home.” It is a near-universal reality. Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight—important medical goals, to be sure, but they are means, not ends. The woman had left an airy apartment she furnished herself for a small beige hospital-like room with a stranger for a roommate. Her belongings were stripped down to what she could fit into the one cupboard and shelf they gave her. Basic matters, like when she went to bed, woke up, dressed, and ate, were subject to the rigid schedule of institutional life. She couldn’t have her own furniture or a cocktail before dinner, because it wasn’t safe. There was so much more she felt she could do in her life. “I want to be helpful, play a role,” she said. She used to make her own jewelry, volunteer at the library. Now, her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days. Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that, once you lose your physical independence, a life of worth and freedom is simply not possible. The elderly themselves have not completely succumbed, however. Many resist. In every nursing home and assisted living facility, battles rage over the priorities and values people are supposed to live by. Some, like Alice, resist mainly through noncooperation—refusing the scheduled activities or medications. They are the ones we call “feisty.” It’s a favorite word for the aged. Outside a nursing home, we usually apply the adjective with a degree of admiration. We like the tenacious, sometimes cantankerous ways in which the Harry Trumans of the world assert themselves. But inside, when we say someone is feisty, we mean it in a less complimentary way. Nursing home staff like, and approve of, residents who are “fighters” and show “dignity and self-esteem”—until these traits interfere with the staff’s priorities for them. Then they are “feisty.” Talk to the staff members and you will hear about the daily skirmishes. A woman calls for help to the bathroom “every five minutes.” So they put her on a set schedule, taking her to the bathroom once every couple hours, when it fits into their rounds. But she doesn’t go according to schedule, instead wetting her bed ten minutes after a bathroom trip. So now they put her in a diaper. Another resident refuses to use his walker and takes unauthorized, unaccompanied walks. A third sneaks cigarettes and alcohol. Food is the Hundred Years’ War. A woman with severe Parkinson’s disease keeps violating her pureed diet restriction, stealing food from other residents that could cause her to choke. A man with Alzheimer’s disease hoards snacks in his room, violating house rules. A diabetic is found eating clandestine sugar cookies and pudding, knocking his blood sugar levels off his target. Who knew you could rebel just by eating a cookie? In the horrible places, the battle for control escalates until you get tied down or locked into your Geri-chair or chemically subdued with psychotropic medications. In the nice ones, a staff member cracks a joke, wags an affectionate finger, and takes your brownie stash away. In almost none does anyone sit down with you and try to figure out what living a life really means to you under the circumstances, let alone help you make a home where that life becomes possible. This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves anymore. * * * ONE DAY WHEN Jim visited Alice, she whispered something in his ear. It was winter 1994, a few weeks after her hip fracture and admission to the skilled nursing unit and two years since she’d begun living at Longwood House. He’d wheeled her from her room for a stroll around the complex. They found a comfortable place in the lobby and stopped to sit for a while. They were both quiet people, and they’d been content to sit there silently, watching people come and go. That was when she leaned toward him in her wheelchair. She whispered just two words. “I’m ready,” she said. He looked at her. She looked at him. And he understood. She was ready to die. “Okay, Mom,” Jim said. It saddened him. He wasn’t sure what to do about it. But not long afterward, the two of them arranged for a Do Not Resuscitate order to be put on record at the nursing home. If her heart or her breathing stopped, they would not attempt to rescue her from death. They would not do chest compressions or shock her or put a breathing tube down her throat. They would let her go. Months passed. She waited and endured. One April night, she developed abdominal pains. She mentioned them briefly to a nurse, then decided to say nothing more. Later, she vomited blood. She alerted no one. She didn’t press the call button or say anything to her roommate. She stayed in bed, silent. The next morning, when the aides came to wake the residents on her floor, they found she was gone. 4 • Assistance You’d think people would have rebelled. You’d think we would have burned the nursing homes to the ground. We haven’t, though, because we find it hard to believe that anything better is possible for when we are so weakened and frail that managing without help is no longer feasible. We haven’t had the imagination for it. In the main, the family has remained the primary alternative. Your chances of avoiding the nursing home are directly related to the number of children you have, and, according to what little research has been done, having at least one daughter seems to be crucial to the amount of help you will receive. But our greater longevity has coincided with the increased dependence of families on dual incomes, with results that are painful and unhappy for all involved. Lou Sanders was eighty-eight years old when he and his daughter, Shelley, were confronted with a difficult decision about the future. Up to that point he had managed well. He’d never demanded much from life beyond a few modest pleasures and the company of family and friends. The son of Russian-speaking Jewish immigrants from Ukraine, he’d grown up in Dorchester, a working-class neighborhood in Boston. In World War II, he served in the air force in the South Pacific, and after returning he married and settled in Lawrence, an industrial town outside Boston. He and his wife, Ruth, had a son and a daughter, and he went into the appliance business with a brother-in-law. Lou was able to buy the family a three-bedroom house in a nice neighborhood and give his children college educations. He and Ruth encountered their share of life’s troubles. Their son, for instance, had serious problems with drugs, alcohol, and money and proved to have bipolar disorder. In his forties, he committed suicide. And the appliance business, which had done well for years, went belly-up when the chain stores came along. At fifty years old, Lou found himself having to start over. Nonetheless, despite his age, lack of experience, and lack of a college education, he was given a new chance as an electronic technician at Raytheon and ended up spending the remainder of his career there. He retired at sixty-seven, having worked the additional two years to get 3 percent extra on his Raytheon pension. Meanwhile, Ruth developed health issues. A lifelong smoker, she was diagnosed with lung cancer, survived it, and kept smoking (which Lou couldn’t understand). Three years after Lou retired, she had a stroke that she never wholly recovered from. She became increasingly dependent on him—for transportation, for shopping, for managing the house, for everything. Then she developed a lump under her arm, and a biopsy revealed metastatic cancer. She died in October 1994, at the age of seventy-three. Lou, at seventy-six, became a widower. Shelley worried for him. She didn’t know how he would get along without Ruth. Caring for Ruth through her decline, however, had forced him to learn to fend for himself, and, although he mourned, he gradually found that he didn’t mind being on his own. For the next decade, he led a happy, satisfying life. He had a simple routine. He rose early in the morning, fixed himself breakfast, and read the newspaper. He’d take a walk, buy his groceries for the day at the supermarket, and come home to make his lunch. Later in the afternoon, he would go to the town library. It was pretty, light-filled, and quiet, and he’d spend a couple hours reading his favorite magazines and newspapers or burrowing into a thriller. Returning home, he’d read a book he’d checked out or watch a movie or listen to music. A couple of nights a week, he’d play cribbage with one of his neighbors in the building. “My father developed really interesting friendships,” Shelley said. “He could make friends with anyone.” One of Lou’s new companions was an Iranian clerk at a video store in town where Lou often stopped in. The clerk, named Bob, was in his twenties. Lou would perch on a bar stool that Bob set up by the counter for him, and the two of them—the young Iranian and the old Jew—could hang out for hours. They became such good pals that they even traveled to Las Vegas together once. Lou loved going to casinos and made trips with an assortment of friends. Then, in 2003, at the age of eighty-five, he had a heart attack. He proved lucky. An ambulance sped him to the hospital, and the doctors were able to stent open his blocked coronary artery in time. After a couple weeks in a cardiac rehabilitation center, it was as if nothing had happened at all. Three years later, however, he had his first fall—that harbinger of unstoppable trouble. Shelley noticed that he had developed a tremor, and a neurologist diagnosed him with Parkinson’s disease. Medications controlled the symptoms, but he also began having trouble with his memory. Shelley observed that when he told a long story he sometimes lost the thread of what he was saying. Other times, he seemed confused about something they’d just spoken about. Most of the time he seemed fine, even exceptional for a man of eighty-eight years. He still drove. He still beat everyone at cribbage. He still looked after his home and managed his finances by himself. But then he had another bad fall, and it scared him. He suddenly felt the weight of all the changes that had been accumulating. He told Shelley he was afraid he might fall one day, hit his head, and die. It wasn’t dying that scared him, he said, but the possibility of dying alone. She asked him what he would think about looking at retirement homes. He wanted no part of it. He’d seen friends in those sorts of places. “They’re full of old people,” he said. It was not the way he wanted to live. He made Shelley promise to never put him in such a place. Still, he could no longer manage on his own. The only choice left for him was to move in with her and her family. So that’s what Shelley arranged for him to do. I asked her and her husband, Tom, how they had felt about this. Good, they both said. “I didn’t feel comfortable with him living independently anymore,” Shelley said, and Tom agreed. Lou’d had a heart attack. He was going on ninety. This was the least they could do for him. And, they admitted thinking, how long were they really going to have with him, anyway? * * * TOM AND SHELLEY lived comfortably in a modest colonial in North Reading, a Boston suburb, but never completely so. Shelley worked as a personal assistant. Tom had just spent a year and half unemployed after a layoff. Now he worked for a travel company for less than he used to earn. With two teenage children in the house, there was no obvious space for Lou. But Shelley and Tom converted their living room into a bedroom, moving in a bed, an easy chair, Lou’s armoire, and a flat-screen television. The rest of his furniture was sold off or put in storage. Cohabitation required adjustment. Everyone soon discovered the reasons that generations prefer living apart. Parent and child traded roles, and Lou didn’t like not being the master of his home. He also found himself lonelier than he expected. On their suburban cul-de-sac, he had no company for long stretches of the day and nowhere nearby to walk to—no library or video store or supermarket. Shelley tried to get him involved in a day program for senior citizens. She took him to a breakfast they had. He didn’t like it one bit. She discovered they made occasional trips to Foxwoods, a casino two hours from Boston. It wasn’t his favorite, but he agreed to go. She was thrilled. She hoped he’d make friends. She told me, “It felt like I was putting my child on the bus”—which was probably exactly what he disliked about it. “I remember saying, ‘Hi, everyone. This is Lou. This is his first time so I hope you will all be friends with him.’” When he came back, she asked him if he’d made any friends. No, he said. He just gambled by himself. Gradually, though, he found ways to adapt. Shelley and Tom had a Chinese Shar-Pei named Beijing, and Lou and the dog became devoted companions. She slept on his bed with him at night and sat with him when he read or watched TV. He took her on walks. If she was in his recliner, he’d go get another chair from the kitchen rather than disturb her. He found human companions, too. He took to greeting the mailman each day, and they became friends. The mailman played cribbage, and he started coming over every Monday to play on his lunch hour. Shelley hired a young man named Dave to spend time with Lou, as well. It was the sort of preengineered playdate that is always doomed to failure, but—go figure—they hit it off. Lou played cribbage with Dave, too, and he came over a couple afternoons a week to hang out. Lou settled in and imagined that this would be how he’d live out the rest of his days. But while he managed to adjust, Shelley found the situation steadily more impossible. She was working, looking after the home, and worrying about her kids, who had their own struggles as they made their way through high school. And then she had to look after her dear but frighteningly frail and dependent father. It was an enormous burden. The falls, for example, never stopped. He’d be in his room or in the bathroom or getting up from the kitchen table, when he’d suddenly pitch off his feet like a tree falling. In one year, he had four ambulance rides to the emergency room. The doctors stopped his Parkinson’s medication, thinking that might be the culprit. But that only worsened his tremors and made him yet more unsteady on his feet. Eventually, he was diagnosed with postural hypotension—a condition of old age in which the body loses its ability to maintain adequate blood pressure for brain function during changes in position like standing up from sitting. The only thing the doctors could do was to tell Shelley to be more careful with him. At night, she discovered, Lou had night terrors. He dreamt of war. He’d never been in hand-to-hand combat, but in his dreams an enemy would be attacking him with a sword, stabbing him or chopping his arm off. They were vivid and terrifying. He’d thrash and shout and hit the wall next to him. The family could hear him across the house: “Nooo!” “What do you mean?” “You son of a bitch!” “We’d never heard him say anything like that before,” Shelley said. He kept the family up many nights. The demands on Shelley only mounted. At ninety, Lou no longer had the balance and dexterity required to bathe himself. On the advice of a senior services program, Shelley installed bathroom grab bars, a sitting-height toilet, and a shower chair, but they weren’t enough, so she arranged for a home health aide to help with washing and other tasks. But Lou didn’t want showers in the daytime when an aide could help. He wanted baths in the nighttime, which required Shelley’s help. So every day, this became her job, too. It was the same with changing his clothes when he had wet himself. He had prostate issues, and, although the urologist gave him medicines for it, he still had problems with dribbles and leaks and not making it to the bathroom in time. Shelley tried to get him to wear protective disposable underwear, but he wouldn’t do it. “They’re diapers,” he said. The burdens were large and small. He didn’t like the food she made for the rest of her family. He never complained. He just wouldn’t eat. So she had to start making separate meals for him. He was hard of hearing and would blast the television in his room at brain-broiling volume. They’d shut his door, but he didn’t like that—the dog couldn’t get in and out. Shelley was ready to throttle him. Eventually, she found wireless earbuds called “TV ears.” Lou hated them, but she made him use them. “They were a lifesaver,” Shelley said. I wasn’t sure if she meant that it was her life that they saved or his. Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial. Lou was on numerous medications, which had to be tracked and sorted and refilled. He had a small platoon of specialists he had to visit—at times, nearly weekly—and they were forever scheduling laboratory tests, imaging studies, and visits to other specialists. He had an electronic alert system for falls, which had to be tested monthly. And there was almost no help for Shelley. The burdens for today’s caregiver have actually increased from what they would have been a century ago. Shelley had become a round-the-clock concierge/chauffeur/schedule manager/medication-and-technology troubleshooter, in addition to cook/maid/attendant, not to mention income earner. Last-minute cancellations by health aides and changes in medical appointments played havoc with her performance at work, and everything played havoc with her emotions at home. Just to take an overnight trip with her family, she had to hire someone to stay with Lou, and even then a crisis would scuttle the plans. One time, she went on a Caribbean vacation with her husband and kids but had to return after just three days. Lou needed her. She felt her sanity slipping. She wanted to be a good daughter. She wanted her father to be safe, and she wanted him to be happy. But she wanted a manageable life, too. One night she asked her husband, should we find a place for him? She felt ashamed just voicing the thought. It’d break her promise to her father. Tom wasn’t much help. “You’ll manage,” he told her. “How much more time is there?” Lots, it would turn out. “I was being insensitive to her,” Tom told me, looking back three years later. Shelley was reaching the breaking point. She had a cousin who ran an elder care organization. He recommended a nurse to come out to assess Lou and talk to him, so that Shelley didn’t have to be the bad guy. The nurse told Lou that given his increased needs, he needed more help than he could get at home. He shouldn’t be so alone through the day, she said. He looked at Shelley imploringly, and she knew what he was thinking. Couldn’t she just stop working and be there for him? The question felt like a dagger in her chest. Shelley teared up and told him that she couldn’t provide the care he needed—not emotionally and not financially. Reluctantly, he agreed to let her take him to look for a place. It seemed as if, once aging led to debility, it was impossible for anyone to be happy. * * * THE PLACE THEY decided to visit wasn’t a nursing home but an assisted living facility. Today, assisted living is regarded as something of an intermediate station between independent living and life in a nursing home. But when Keren Brown Wilson, one of the originators of the concept, built her first assisted living home for the aged in Oregon in the 1980s, she was trying to create a place that would eliminate the need for nursing homes altogether. She’d wanted to build an alternative, not a halfway station. Wilson believed she could create a place where people like Lou Sanders could live with freedom and autonomy no matter how physically limited they became. She thought that just because you are old and frail, you shouldn’t have to submit to life in an asylum. In her head she had a vision of how to make a better life achievable. And that vision had been formed by the same experiences—of reluctant dependency and agonized responsibility—that Lou and Shelley were grappling with. The bookish daughter of a West Virginia coal miner and a washerwoman, neither of whom were schooled past eighth grade, Wilson was an unlikely radical. When she was in grade school, her father died. Then, when she was nineteen years old, her mother, Jessie, suffered a devastating stroke. Jessie was just fifty-five years old. The stroke left her permanently paralyzed down one side of her body. She could no longer walk or stand. She couldn’t lift her arm. Her face sagged. Her speech slurred. Although her intelligence and perception were unaffected, she couldn’t bathe herself, cook a meal, manage the toilet, or do her own laundry—let alone any kind of paid work. She needed help. But Wilson was just a college student. She had no income, a tiny apartment she shared with a roommate, and no way to take care of her mother. She had siblings but they were little better equipped. There was nowhere for Jessie but a nursing home. Wilson arranged for one near where she was in college. It seemed a safe and friendly place. But Jessie never stopped asking her daughter to “Take me home.” “Get me out of here,” she said over and over again. Wilson became interested in policy for the aged. When she graduated, she got a job working in senior services for the state of Washington. As the years passed, Jessie shifted through a series of nursing homes, near one or another of her children. She didn’t like a single one of those places. Meanwhile, Wilson got married, and her husband, a sociologist, encouraged her to continue with her schooling. She was accepted as a PhD student in gerontology at Portland State University in Oregon. When she told her mother she would be studying the science of aging, Jessie asked her a question that Wilson says changed her life: “Why don’t you do something to help people like me?” “Her vision was simple,” Wilson wrote later. She wanted a small place with a little kitchen and a bathroom. It would have her favorite things in it, including her cat, her unfinished projects, her Vicks VapoRub, a coffeepot, and cigarettes. There would be people to help her with the things she couldn’t do without help. In the imaginary place, she would be able to lock her door, control her heat, and have her own furniture. No one would make her get up, turn off her favorite soaps, or ruin her clothes. Nor could anyone throw out her “collection” of back issues and magazines and Goodwill treasures because they were a safety hazard. She could have privacy whenever she wanted, and no one could make her get dressed, take her medicine, or go to activities she did not like. She would be Jessie again, a person living in an apartment instead of a patient in a bed. Wilson didn’t know what to do when her mother told her these things. Her mother’s desires seemed both reasonable and—according to the rules of the places she’d lived—impossible. Wilson felt badly for the nursing home staff, who worked hard taking care of her mother and were just doing what they were expected to do, and she felt guilty that she couldn’t do more herself. In graduate school, her mother’s uncomfortable question nagged at her. The more she studied and probed, the more convinced she became that nursing homes would not accept anything like what Jessie envisioned. The institutions were designed in every detail for the control of their residents. The fact that this design was supposed to be for their health and safety—for their benefit—made the places only that much more benighted and impervious to change. Wilson decided to try spelling out on paper an alternative that would let frail elderly people maintain as much control over their care as possible, instead of having to let their care control them. The key word in her mind was home. Home is the one place where your own priorities hold sway. At home, you decide how you spend your time, how you share your space, and how you manage your possessions. Away from home, you don’t. This loss of freedom was what people like Lou Sanders and Wilson’s mother, Jessie, dreaded. Wilson and her husband sat at their dining table and began sketching out the features of a new kind of home for the elderly, a place like the one her mother had pined for. Then they tried to get someone to build it and test whether it would work. They approached retirement communities and builders. None were interested. The ideas seemed impractical and absurd. So the couple decided to build the place on their own. They were two academics who had never attempted anything of the sort. But they learned one step at a time. They worked with an architect to lay out the plans in detail. They went to bank after bank to get a loan. When that did not succeed, they found a private investor who backed them but required them to give up majority ownership and to accept personal liability for failure. They signed the deal. Then the state of Oregon threatened to withhold licensing as senior housing because the plans stipulated that people with disabilities would be living there. Wilson spent several days camped out in one government office after another until she had secured an exemption. Unbelievably, she and her husband cleared every obstacle. And in 1983, their new “living center with assistance” for the elderly—named Park Place—opened in Portland. By the time it opened, Park Place had become far more than an academic pilot project. It was a major real estate development with 112 units, and they filled up almost immediately. The concept was as appealing as it was radical. Although some of the residents had profound disabilities, none were called patients. They were all simply tenants and were treated as such. They had private apartments with a full bath, kitchen, and a front door that locked (a touch many found particularly hard to imagine). They were allowed to have pets and to choose their own carpeting and furniture. They were given control over temperature settings, food, who came into their home and when. They were just people living in an apartment, Wilson insisted over and over again. But, as elders with advancing disabilities, they were also provided with the sorts of help that my grandfather found so readily with his family all around. There was help with the basics—food, personal care, medications. There was a nurse on-site and tenants had a button for summoning urgent assistance at any time of day or night. There was also help with maintaining a decent quality of life—having company, keeping up their connections in the outside world, continuing the activities they valued most. The services were, in most ways, identical to the services that nursing homes provide. But here the care providers understood they were entering someone else’s home, and that changed the power relations fundamentally. The residents had control over the schedule, the ground rules, the risks they did and didn’t want to take. If they wanted to stay up all night and sleep all day, if they wanted to have a gentleman or lady friend stay over, if they wanted not to take certain medications that made them feel groggy; if they wanted to eat pizza and M