At the End of Life

“You can’t deny the Godot-like absurdities of the nursing home. It’s a vast diorama of waiting,” writes Howard Mansfield. “You walk through lives, walk down the hall past centuries of experience, left unspoken.”

The woman in the wheelchair has been left in the hall next to the busy nurses’ station. She’s slumped forward, wearing a bright red sweater, a merry color that throws her sorrow into deep contrast. Her skin is smooth, youthful for someone in her eighties. There is a pile of mashed up tissues in front of her; it’s a clock marking her day, tissue by tissue.

At my mother’s table there are only two other residents. They are beyond conversation. Sinatra plays on a cheap portable stereo. Songs of love forever and forever, love when you’re seventeen, devotion night and day. The music is loud. No one is listening. Or maybe no one is hearing. Directly across from us a woman with waxy smooth skin leans back in her wheelchair, head thrown toward the ceiling, mouth open, asleep. At the head of the table a bald guy droops to one side, the eye closest to us opening and closing, looking toward us, and closing again. The eye is like a deep-sea creature peering out from a cave. And then there’s my mother. It’s a shock to see her. She looks so old. This is what everyone thinks when, after a month or two, they visit their parents, relatives, neighbors, and friends in a nursing home. These people look so old.

In that moment we are saying they are old and we are not. We don’t intend it this way, but we feel them pulling us over the edge into old age and death, so we pull back. They’re leaving us; they’ve left. We have come to say: you haven’t left us. We sit around, but as time congeals, the small talk gets smaller until it vanishes, confirming that they have indeed left.

Out in the hall I hear a family talking as they walk by. “She’s eighty-two. She was a vibrant woman—up to now. Did you see her?” A voice replies, “She’ll bounce back.” He might as well have said, “She’ll beat this rap. We’ll get her out of this joint. She’s not eighty-two—not really.”

Hours pass. Then more hours pass. Nothing happens. Nothing. My wife and I sit and look at my mother as Sinatra sings, the same songs repeating. Night and day . . . My mother is deaf, so conversation is constrained to a game of Western Union—a few words telegraphed repeatedly. Night and day . . .

Each time I visit I’m hit with the enforced lethargy of the nursing home. Sea View, this place is called. There’s no sea, no view—no surprise. It’s a three-story brick bunker with foul, murky fluorescent light. Row after row of wall lights segment the narrow halls into one dun, dusky, frame after another. Everything has a tannish hue.

I see a woman at the hall’s end, collapsing into herself the way the aged do when they’re wheelchair bound, taking on the shape of a soft, deflating ball. She pulls herself forward with her feet, walking her chair along, slowly, frame by frame.

Wheelchair-bound patients are lined up to the right and left, parked like cars, bumper to bumper along the wall. The patients—inmates? wards?—sit there waiting to go to lunch. No one talks. No one moves. A few sit with their heads fallen down. One or two stare right at you, but it seems they see nothing. No expression registers, no smile, no eye movement. Just a hundred-yard stare. They are like marionettes on a shelf. They seem to be partly filleted.

The bulletin boards add to the cheer: 10:30 Word games. 11:30 Bingo. Enjoy your day! Next to this are a dozen coloring pages by the residents. Two scenes have been colored in—one of dolphins arcing out of the water and the other showing two kittens sitting under a rainbow.

I’m just visiting. What would it be like if I had to live here today? Kristen Murphy, a healthy thirty-eight-year-old, wanted to find out. As part of her medical education, Murphy lived in a nursing home for ten days. She was assigned a condition—a mild stroke, difficulty swallowing, and chronic lung disease—and she was treated like any other resident. Murphy was confined to her wheelchair, hoisted out of bed with a lift, subjected to regular checks for bed sores, given pureed foods, and had to be helped in the bathroom. When she got her wheelchair stuck in a corner and couldn’t move, she cried. “All I wanted to do was shut my door and stay in here,” she told the New York Times. But she knew she had to get out.

She went to bingo, hung out by the nurses’ station with other residents, and made some friends. “At times I felt really lonely and got depressed,” Murphy said. “Sometimes it was an emotional roller coaster, up and down, up and down.” Many residents cry, she learned. They miss their family, their old life. They cry because they won’t be going home.

One room, one scene: Two doors are open—the room’s door, which is always open anyway, and the bathroom door. A nurse in the hall is almost laughing: “What do you want me to do with him?” she says to another nurse. A sudden view: a man in the bathroom, standing up, no pants, facing the wall. His ass is pink. The view, the waiting helplessness of the man, is like those photos of the prisoners at Abu Ghraib.

In the hall by the entrance, a fragile couple sit in their wheelchairs facing each other with an arm extended, fingertips touching, heads bowed, unmoving. The final bow of a pas de deux. You walk through lives, walk down the hall past centuries of experience, left unspoken.

We are meeting my mother for lunch. My dad stakes out a table in a small room with five or six tables and a few patients—one man with a pink face that looks as if it’s been sandblasted. He has a long regular face, a banker’s or an insurance broker’s face; he must have been handsome in his day. Another man has bloodlike stains down his front. He speaks like a zombie, slow and guttural: Take . . . me . . . out . . . of . . . here. The words are forced up with great effort from the depths, each word breaking on the surface like a bubble. He thinks I work here. I shake my head “no.” He looks at me with rage. Finally a nurse comes by, and he repeats his slurred request. She takes him out, saying, “Did you have chocolate today?” That’s what’s on his shirt.

Another inmate tells us that everyone has assigned seats in this room. We have already claimed a table—set out roses in a Styrofoam cup “vase,” a deli lunch, and my dad’s hat, jacket, and cane. We move. The nursing home is high school with dementia.

A dozen times I pass the door marked SOILED UTILITY. A key hangs from a cord taped to the door. The key is in the lock. Have they had thefts of soiled utility? If people are stealing dirty sheets, then we have a big problem. A sign on the door says: leave this key in the lock. So: why have the lock and the key? There is probably a skein of regulations, memos, and meetings behind that sign. We are in the grip of institutional craziness—not the “crazies” who are “institutionalized,” but rather the craziness of our institutions.

They stumble along over this until the first man finally explains that Harpo could talk but didn’t as part of his act. Then he says, “There were five Marx Brothers.” He starts to name them—Groucho, Harpo, Chico . . . and after a while he comes up with Zeppo. But the fifth? They start the list over and are stumped.

I’m sitting across the room with my dad. He’s in this nursing home—a different one from my mother’s—after a bad fall for a few weeks of physical therapy. We’re paying his bills. The two men are still trying to name the fifth Marx Brother. I call over, “Gummo.”

“Gummo? I don’t remember him,” and he waves his hand to the side—the classic New York gesture: eh, take it away. Having an answer has disappointed them. I feel like I have taken a bone from a dog. Who knows how long they could have pursued the mystery of the forgotten Marx Brother? They have all day, and the next.

Our late years are the story of the dwelling we take for granted, the body—leaving. We are doubly dispossessed, losing our homes and our bodies. Late in life, with our abilities eroding and many of our friends dead, we are forced on an arduous journey. No one wants to go to a nursing home. “People go to a hospital to get fixed up and then return home. But people generally go to a nursing home fully expecting to get worse and die,” says a former nursing home worker, Thomas Edward Gass, in Nobody’s Home. I read his book when I was thinking about the qualities of home. The mystery that holds my attention is that some houses have life—are home, are dwellings—and others don’t. Dwelling is an old-fashioned word we’ve misplaced. When we live heart and soul, we dwell. When we belong to a place, we dwell. A true home shelters the soul.

Gass started out as a nurse’s aide and worked his way up to be the director of social services at a nursing home in the Midwest. On his first day he “gagged at the pungent aroma of fresh diarrhea.” The director of nursing had tried to discourage him from applying for the job. Gass bravely and with an amazing grace faced the stench and doddering of nursing-home life. His job became a pilgrimage. He loved the residents and learned to accept the “cascade of lives in free fall.” The body breaking down, functions ceasing, language shredded into “word salad,” personality devolving into complaint, compliance, or stiff-backed pride in a soft body, and shit shit shit—hard, soft, loose, liquid. The stink of it. Cleaning it up. On his way home at the end of the day, still wearing his scrubs, people would ask him if he was a doctor. “No, I’m a butt-wipe in a nursing home,” he would answer. And he’d remind himself of the Buddhist monasteries in Tibet and Nepal “headed by lamas who reserve the dirtiest toilets for themselves to clean.”

“In the beginning I saw these people as human aliens, a sweet harmless subspecies. But now I feel their sad seeds sprouting within me. I know that I am becoming one of these odd beings I lift and roll and wipe every day,” Gass writes. “We are all infirm. We all have cancer and dementia, and we are all dying,” he says. “We all start out the same and we end up the same.” Nearly half of those of us who will live to age eighty-five may end up here, he notes. Gass spent years in Catholic seminary and in Buddhist meditation. He has the poise and the spiritual depth to face decay and not despair of it. “The nature of things dictates that we must leave those dear to us. Everything born contains its own cessation,” he quotes the Buddha on his deathbed.

He is attuned to the suffering around him, and comforts the residents—touching them, looking them right in the eye—even as he realizes he doesn’t have the time to “help even a quarter of the folks who plead for it. . . . Our residents have nothing to do but focus on their pain. At times our halls become a veritable sea of moaning, crying, begging, and whimpering. It is simply not possible to alleviate the waves of pain, anger, anxiety, boredom, despair, and loneliness.”

A nursing home is a laboratory for cultivating suffering. “The great pain, the gut-wrenching void of nursing-home life has little to do with old age or infection or dementia. The dominant reality in our nursing home is ubiquitous separation,” he writes. “Everyone here is torn away from home and families.” They have surrendered “all pride and privacy. In the end, they’re left possessing nothing but their thoughts.”

Of one patient he says, we treat his body and crush his spirit. Health is defined as a lack of illness. But good health, Gass says, is joy. Recall those times when you felt great—you’d fallen in love, gotten a good job, won a race, he says. That’s more than not being sick, “but since we can’t measure wholeness, boundless expansion, peak experiences, or contentment, we simply act as though they don’t exist.”

Reading Nobody’s Home makes you feel like an old tree—new skin around a dead core. You feel the death inside of you. And you fear in the end you will become your own worst self—your petty fears, complaints, arguments. A petty ball of fear in the dying fortress of the body. After all you’ve done, suffered, achieved, you end up with strangers wiping your ass, cleaning your body, forcing mush into you, telling you what to do and when to do it. It’s a horrific double prison: a dying body in a cinderblock nursing home, cut off from the life you’ve made—or at least, the best part of it—and living as a symptom of the worst of it, as if you had become all scar tissue, all injury.

But Gass has compassion. It’s his hard-worn laurel. He quotes the Vietnamese Buddhist monk Thich Nhat Hahn. Life is flowers and garbage. Hold reverence for garbage; transform it into compost. A gardener can see compost in flowers and flowers in the compost. Buddhas and the enlightened suffer too, says Nhat Hahn, but they know how to transform their suffering into joy. They are good gardeners.

“Fighting life’s displeasures only solidifies our suffering. It’s like wanting to have a magnet with only the positive pole,” says Gass. “Only through a fearless comprehension of our own mortality can we achieve a clear view of reality. In the profound realization that we cannot hold on to health, nor to possession, nor to relationships, comes spiritual maturity.”

The saddest place at Sea View is the third floor. Here the self is broken; time is broken. Here they put those with dementia. My mother and many others have landed here for a few months because their floor is closed during a renovation.

The ward hits you with the smell of shit and piss—the odors rising and falling as you pass the twisted, crazy, and sometimes moaning patients. Their moaning hits you full on, too, mixing with the shit and piss. One woman cries out, “Oh! Oh! They’re coming for me!” And another woman answers with a parrotlike shriek. Call and response, back and forth. The Preacher, as he’s known, leads his private service: “Sing with me, Jesus!” He’s a tall man, withdrawn into his world. He looks within and booms out in a beautiful bass voice, “Sing with me, Jesus!” over and over, the needle stuck on an old record. The oldtime-oldtime-oldtime religion.

A man endlessly shakes maracas: Cha-ka-ka. Cha-ka-ka. Another woman says, “Telmpt” or something, and says it again and again. She doesn’t know why no one can understand her. You can see that in her eyes. Nearby a woman lying on her side in a chair plays with the same piece of string over and over. Once the Preacher quiets down, a woman with long gray hair cries out, “My teeth! My teeth!”

This is the day on the third floor: Oh! Oh! They’re coming for me! Sing with me, Jesus! Telmpt. Telmpt. Sing with me, Jesus! Cha-ka-ka. Cha-ka-ka. Telmpt. Telmpt. My teeth! My teeth! Sing with me, Jesus! Sing with me, Jesus!

On this day a circle of wheelchairs is pushed up to a large screen TV, like cars at the drive-in. They are watching West Side Story. It’s instantly identifiable. The colors are smudged on this TV, like thick makeup. Tony and the Puerto Ricans look like Valley Girls just out of the tanning booths. In this room the movie seems to be pitched at an impossible heart rate—blood couldn’t possibly move that fast; life couldn’t be that dramatic.

I have also been in hospitals a lot lately, visiting family. My mother has had two close calls with death, and my father has fallen twice, breaking bones. Hospitals are another rung on the ladder of dispossession. We are unsheltered here, as we wait with our illness and worries. In the waiting rooms and hallways we are dwelling in anxiety.

The fluorescent light, the antiseptic smell pushes at us, pushes us farther from home, upends the hearth. We curl tighter into ourselves. We walk and sit in a nimbus of worry. We’ve left the earth—we feel ourselves and our loved ones exiting. Good-bye to all that. The doctors and nurses, the white coats and forms and hard edges, the noise of televisions and coded announcements, all of it pushes us on. Hospitals are supposed to be an Olympus of technology and knowledge, but they are partly vast bumbling Victorian institution, partly twenty-first century, and partly River Styx. What parts? The ratio is constantly changing. This throws us again and again.

Hospitals are the machine arrayed against us. Hospitals deny all qualities that can’t be quantified. In the body’s darkest hour, the body is cut off from home, from the stories that bind us to a place on earth. Body and place are orphaned by the modern hospital. The body needs place—calls out for it. “We might say, in sum, that body and place are congruent counterparts. Each needs the other. Each suits the other. Put otherwise, place is where the body is. It is certainly nowhere else,” writes philosopher Edward S. Casey. We are most ourselves, most “ecstatic” when in place, says Casey.

We won’t die, dust to dust, ashes to ashes, but rather we will just be drained away—our fluids, our life, love, and memories, all draining out different tubes, all monitored by green flashing lights, by the machine’s stock market report of our mortality, by the nurses stopping by to check on our signs, some with evident care, others as if we were a pot roast and they were running late.

Hospitals abduct us from the earth. They insert us into a medical machine. We are like the “Borg” in Star Trek, a human being overtaken by the machine. We are tied to hoses, prodded, monitored, injected. In the hospital we leave the earth. Those stories of alien abductions sound to me like surgery and postop recovery.

What would I do for the ill in hospitals, nursing homes, and hospices? I’d give them the sun, moon, and stars. I’d give them daylight and trees and flowers. I’d give them the sound and view of running water. I would open all the paths to peace, to the childhood memories of roaming, to the person’s love of the earth. We will still die, but at least we will die on earth.

The woman in the hall wants to go home—to her place, her routine, her cat, Oprah at four, her friends over to play cards. But no one goes home from here. Maybe they go on to another nursing home; likely they go to the hospital, fail, weaken, and die.

Home is no more. The home she first knew, the home of her crib, of mom and dad, brothers, sisters, dogs and cats. The home she ran to at twilight from play. The home after school, after dates, first jobs, first year away, wedding, first child. That home—whether it was ideal or a tyrant’s kingdom—is gone. The home of her first apartment, of the first place she lived when married. Gone.

You could write your autobiography by listing all the doors you’ve opened, said the philosopher-poet of dwelling, Gaston Bachelard, in The Poetics of Space. Once you’ve arrived in the nursing home, there are no more doors to open.

Howard Mansfield is the author of six books about preservation and history, including The Bones of the Earth; In the Memory House; and The Same Ax, Twice. His latest book is Turn and Jump: How Time and Place Fell Apart (Down East, 2010).