Читать книгу On Vanishing - Lynn Casteel Harper - Страница 10
ОглавлениеIN EARLY 2013, MY GRANDFATHER JACK MOVED TO THE Veterans Home in Mexico, Missouri. He was joining the ranks of the 1.4 million older adults who reside in nursing homes across the United States.
The facility was set on the edge of a remote town in the plains of north central Missouri. It was not an easy place to find. I had never been to that part of the state before Jack was moved there, and I doubt he had either. He would not get out of the car when he and my mother arrived. My mom had to walk away—racked with sadness and guilt, exhausted by the four-hour drive—while a nurse’s aide coaxed him out. This was the third move he had made in three years; it would be his last.
My grandparents moved to Bonne Terre, Missouri, in 1953 after my grandfather had finished his medical residency. At the northern edge of the Ozarks, sixty miles south of St. Louis, Bonne Terre was a mining town, in a region known for having the richest lead ore in the world. During peak years of production in the early decades of the twentieth century, the mines employed thousands of people. A network of more than three hundred miles of underground haulage tracks brought the ore—a total of 8.5 million tons—to the surface. Once the profiteers exhausted the region’s galena deposit—the largest in the world—they vacated the area. The Bonne Terre Mine closed in 1962. Within a decade, mining operations had ceased in St. Francois County and the surrounding area—what had constituted the Lead Belt—and had moved to the underexploited western side of the St. Francois Mountains, the New Lead Belt. After my mother finished college in the mid-’70s, she did not return to live in her depressed hometown. My parents settled in Cape Girardeau, about ninety miles southeast of Bonne Terre. Stretches of windy, two-lane highway with blind turns made the trip between them a particularly long, treacherous drive.
During one of my visits to Bonne Terre when I was in high school, my grandmother Edna showed me a painting on a dim wall in the guest bedroom. A farmer’s wife had painted a pastoral scene of Bonne Terre’s Big River and gave it to Jack for saving her husband’s life. The farmer, who was half-blind, had picked up baby copperheads, mistaking them for big worms. That painting—its sparkling stream knifing through springtime bluffs, rolling along groves of weeping willows and fields of wildflowers—suggested resonance with the early French settlers’ designation of the area as la bonne terre, “the good earth.” The landscape of the town I knew was marked by littered highways, run-down trailer parks, and an eroding chat dump—a large mound of lead-flecked sand, left over from mining operations. I once scaled this chat dump with my cousins on a hot day during our summer vacation; my mom remembers sledding down it in the winters of her childhood.
In 1992, the EPA identified the Old Lead Belt as one of the nation’s most contaminated areas, designating it a National Priorities List Superfund Site; it remains on the list. In 2003, the Eastern Reception, Diagnostic and Correctional Center—the facility where the state executes all its capital offenders—opened in Bonne Terre. This cluster of nineteen metal-roofed buildings, located on a barren 213 acres, inspires one to think neither of good nor of the earth.
After Edna’s sudden death in 2009, my mom knew her dad could not live alone. He had trouble thinking and had relied on his wife to keep their household running. My mom left her job and home in Cape and moved in with her father in Bonne Terre, until she could figure out a more sustainable arrangement. Four months later, my mom moved Jack into an assisted living facility near Bonne Terre. He had lived in St. Francois County for nearly six decades; it was home to his church, beloved Rotary club, and former medical practice. It seemed worth a try to see if he could situate himself there.
Soon after the move, it became obvious that there was no compelling reason for him to remain local. The trip proved too far for my mother to drive regularly, which left her navigating, from a distance, new complications regarding Jack’s care, such as his resistance to bathing. No one from Bonne Terre visited him anyway—no one from Rotary or the church—or, if they did, they did not communicate these visits to my mom. Within the year, my mom moved him to a memory care facility in Cape Girardeau, near my parents’ house. Even if Cape had never been Jack’s home, it had been home to his daughter and her four children—and our sense of place felt somewhat transferrable to him. Even though I had moved from Cape by the time he had relocated, I could still situate him there. There had history for me; I knew the borders, the landmarks, and the people.
Long before Jack’s move to Cape, my parents had decided that eventually they would uproot to be near their most rooted kids—my two siblings who lived in Columbia, a town four hours northwest of Cape. They were in no rush to relocate, wishing to spare Jack another upheaval. However, through an unexpected series of events, my parents received an offer on their house, before it was for sale. With the housing market still tenuous after 2008, they accepted the offer. Two years after settling in Cape, Jack would need to be moved again.
Jack’s new home was not to be in Columbia, however. He was moved forty miles northeast of Columbia into the Missouri Veterans Home in Mexico. He was a proud WWII veteran, and the facility was known for providing good, affordable care (and Jack liked nothing more than a good deal). A bed had just become available. These factors outweighed the fact that Mexico was a place distant from and unknown to my family, a place in which Jack likely had never set foot.
I had no stories of Mexico, Missouri—no memories in it, no mental or emotional anchors—which made Mexico hard to map onto the geography of my mind. It felt vacant, empty. In some ways, Mexico, Missouri, felt as distant to me as Mexico the country, also a place I had never visited. But I could at least conjure some images of the country, however partial, based on media depictions and the photos and stories my friends from Mexico had shared. I drew a total blank when it came to Missouri’s Mexico.
I often had trouble remembering that Jack lived there. I had to remind myself he was there somewhere, in a little room, in a small town, in a part of the state unfamiliar to me. I could never remember how to get there exactly. Even though I regularly sent him cards, I always had to look up his address, his precise Mexico residence never imprinting upon my memory. He was not entirely gone from me as long as I could write to him, I thought. I imagined my notes, a row of triangles erected on his dresser, forming a little fence against isolation. I longed for attachment to the place, to him.
I saw Jack in Mexico only a few times. I lived in New Jersey and visited Missouri infrequently. The second to last time I visited him, I thought it would be the last. It was a beautiful fall afternoon. The floor nurse, who kept her little dog on a leash by the medication cart, told me Jack was still in bed. When I entered the room, he did not seem to register my presence. In the weeks prior to my visit, my mom had noticed his flat affect and increasing remoteness, but I had hoped I could inspire a different response. I had brought him M&M’s, which had been his favorite, but he refused to open his mouth. I played big band music on a little CD player by his bed and held up old photos for him to see—all activities that had seemed to resonate with him in previous visits. He closed his eyes or stared straight ahead, his body motionless. I assumed he was tired of this world and ready to take his leave before too long, so I shut off the music and put the albums away. I sobbed quietly and said goodbye and prayed near his ear and kissed his head and had trouble walking out the door. It took the fifty-minute drive back to Columbia for my puffy, red face to lighten.
The last time I saw Jack was on Memorial Day weekend. I did not permit myself goodbyes or tears, now convinced that his fundamental hardiness would sustain him beyond all reasoning. This time, he was dressed and in the television room. It was another beautiful day. Flags lined the driveway up to the facility. I pushed his wheelchair outside on a concrete walking path and stopped at a bench with a small canopy for shade. I told him it was Memorial Day. I sat facing him and gestured toward the flags, but he peered past me to the magnificent pin oak in the open field. I told him I remembered the big trees in his yard in Bonne Terre and how he had dubbed his house “Oak Pointe” and had engraved a wooden OAK POINTE sign, affixing it to a tree at the end of his driveway. (How strangely domestic the French “e” had become in that most unpretentious region.) I told him he made incredible things out of oak, cherry, and walnut in his woodshed. I lightly touched his hand. He made no visible response to any of my overtures—the pin oak drew his whole attention. I stopped talking.
We had never before sat together in silence. When I was a child, he was forever in motion: playing his trombone for me, teaching me a new computer program, working in the yard. I was forever trying to find some entry point into his activity—some way to connect beyond his showing me something, making me something, teaching me something. Here we were now at rest—and I was squirming. I had trouble knowing what the stillness meant: depression, apathy, serenity, emptiness, resentment, peace? The small awning offered no cover; the relentless sun, coming at a late afternoon angle, struck us entirely.
When I brought Jack back inside, the nurse with the dog asked him if he had a headache. He made no motion. “Oh, yes, your head hurts. Here is some Tylenol.” She gave him the pill and he took it. I wondered if she saw a response that I could not. I knelt beside him at the table, looking him in the eye. I did not know what to do or say, but I wanted a sweet sign—a smile or word from him I could report to my mother to make her feel better, to make myself feel better—to believe nothing was hurting. Instead, he narrowed his eyes and frowned. He scrunched his nose and forehead and shook his head, making a little mocking face back at me. This smirk was the first visible reaction he had made to my presence during the visit—a retort I read as possibly playful but mostly bitter, even sarcastic. I don’t need your pity. I took the sneer as a sign to leave. I gave him a peck on the cheek, told him I loved him, and slipped out of his view for the last time.
Here is one way I read our final visits: Jack was tired of trying to find and refind his social footing, and was no longer trying. I don’t mean he consciously decided to become apathetic, but perhaps he sensed how difficult it was to relate and how close failure was at every attempt. I think it became easier, less painful and exhausting, to be docile. The speech pathologist Rosemary Lubinski notes that when individuals with dementia “perceive that their responses are futile, they stop responding.” Tom Kitwood makes a similar point, warning that if the person’s need for inclusion is not met, he or she “is likely to decline and retreat, until life is lived almost entirely within the bubble of isolation.” By this view, Jack’s withdrawal was not due to his disease process alone. Rather, it was a response to an entire social environment unable to support him.
It was not that Jack’s caregivers were particularly negligent, or that, had he been surrounded by more solicitous conversation partners, he would have been able to communicate proficiently. But it seems that when little is expected from persons with advanced dementia, little is given to or received from them. The sneer Jack gave me was an expression of unnamable anger—not so much with me personally, I like to think, but with the forces that had brought him to this place of exile, a bubble of isolation, cut off from anything and anyone who had ever signified even a semblance of home.
Mexico was the site of dislocation: Jack’s final removal from his former life. In Mexico, he was not the man who stitched up bleeding heads and treated snakebites, nor was he the decorated pilot. Although he was surrounded by veterans, he no longer recalled his war stories—or, at least, no longer told them. He was not the jazz musician, or the Rotarian ambassador, or the philanthropic donor. He was Jack who didn’t say much, who liked his morning coffee, and who sang on occasion. He was Jack with glowing skin and a full head of soft, white hair, who was a “Total Assist,” requiring help with every daily activity from dressing to bathing. Once he had delivered babies, now he was diapered. Once he had traveled the world, now he shared a room, divided by a retractable curtain, with another slight, contracted man.
In this more pessimistic light, I saw Jack’s successive moves, farther and farther away from anyone or anything familiar, as stripping him of any grounding in who or where he was. The insidious extraction of his life unfolded in sequence: his own home (fifty-seven years), assisted living near his hometown (nine months), assisted living near his daughter’s home (two years), a nursing home in unknown Mexico (two years). He lived his final days in a place detached from any place he had known, cared for by strangers. His emotional distance should come as no surprise—what handle had he to grasp, what anchor served to hold his rocking vessel?
Each move was not intended to do any harm; inertia simply took over. While my grandfather may have had the financial resources to allow him to stay in his home by hiring round-the-clock caregivers, the prospect of relying on strangers to live with him in a semirural setting, with no close neighbors and my mother two hours away, would create a particularly vulnerable setup for him. Perhaps he could have lived with my parents. But they would have struggled to offer the continuous care my grandfather needed while managing their own lives. Not to mention that he and my grandmother had never so much as stayed overnight at our house when I was growing up, balking at the idea of “imposing” on my parents for even one night, let alone for an indefinite period. In the wake of my grandmother’s unexpected death, coordinating Jack’s care fell to my mom, who had some help from her sister who lived in Florida. Like most family caregivers, they did the best they could amid few viable alternatives.
I felt the weight of Jack’s distance each time I took the spur off I-70 at Kingdom City and headed due north, past farm fields and blank plains sky, to an unfamiliar exit. I sang James Taylor’s “Mexico”; the song’s carefree scenario and wistful longing for the country of Mexico’s sweet sun and bright moon soothed the sting I felt for my token visits to this remote place, to a man I had trouble locating. However, even Taylor’s Mexico contains a reality check—a paradise lost—sad letters from home, financial ruin, hard times. Not even Mexico’s hot sun and bright nights could protect against life’s inevitable blows. And Jack’s Mexico—the one in Missouri—was not a vacation destination, a make-everything-all-right utopia. Mexico, for him, spelled separation.
“Oh, Mexico!” I sang in full voice, windows down, my face toward the horizon’s vanishing point. “I guess I’ll have to go now!”
•
Jack’s story, while personal for me, is not particularly unique: an old person, frail of mind or body or both, lives out his final years in a nursing institution, under the watch of paid staff, segregated from the wider community. Given that nearly a million and a half people in the United States live in nursing homes, institutionalization of elders is not a private, isolated phenomenon. There are nearly 16,000 nursing homes and another 30,000 assisted living facilities in America. Senior housing is big business. Long-term nursing care costs $6,844 per month, on average, for a semiprivate room. An average assisted living apartment costs $3,628 per month. Medicare covers neither. According to the CDC, 50.4 percent of residents in nursing homes have a diagnosis of Alzheimer’s or some other form of dementia. As the ratio of adults under sixty-five to adults over sixty-five continues to drop, staffing these facilities will become increasingly difficult. Mexico is not Jack’s problem or my family’s problem alone—it is a public problem.
As I reflected on my grandfather’s moves, as well as those endured by the residents I came to know in the Gardens, I began to question this arrangement—one that makes it so hard for so many old people to remain situated in their neighborhoods and communities, requiring them to exchange the rhythms of home for the regimentation of clinical care. At times, the ubiquity of elder care facilities can seem to me to be emblematic of malignant social psychology—a form of banishment and exclusion, physical or emotional.
“Banishment” in the context of care homes is often interpreted in narrow ways: disallowing a person to participate in a group activity, or placing a person in her room without access to others. At this micro level, I have no reason to believe Jack suffered banishment at the Veterans Home. However, from the vantage point of the larger movements of his life and the lives of others like him, I can’t help but see the marks of banishment. In Jack’s case, he was sent away from his home of fifty-seven years; he was sent away from the region he knew; he was excluded even from Columbia, the new epicenter of his daughter’s family. He ended up on a landlocked island—physically out of sight and psychologically out of mind. He became a foreigner in the middle of his own home state. It is unlikely he knew his coordinates or could have located Mexico on a map. But my sense is that he possessed some awareness of being cut loose, adrift in no-man’s-land—and his utterly subdued affect, I believe, may have had something to do with this awareness.
It is not that all nursing institutions are abysmal or that nothing of value can or does go on within them. They are often the only alternative elders have to languishing—physically, emotionally, spiritually—in their own homes or in the homes of overextended relatives, without the help they need. Perhaps the only thing worse than having nursing homes is not having them. It is what they represent that troubles me: the movement of frail old people to the fringes, out of common life, and into “the kingdom of the sick”—to borrow Sontag’s illustrative phrase. They represent the readily available, readily agreed-upon societal solution to elder care, which involves relocation—more accurately, dislocation. That these institutions provide communities of care otherwise denied to elders, I can’t help but feel, indicates a larger societal failure to welcome, integrate, and support them in neighborhoods and the greater community.
Like the insane asylums of the nineteenth century, might the presence of separate homes for elders in the United States reflect the prejudices of a dominant culture—a culture that finds institutionalization a viable remedy to the problems represented by certain populations?
The geriatrician Bill Thomas, a self-proclaimed nursing home “abolitionist,” contends that traditional nursing homes represent the “declinist” view of aging—that is, the notion widely held in our society that older people are broken human beings who are less than they used to be. Rather than whole persons who continue to develop through their lifespan, old people are assumed to be in universal decline. This decline, so the declinist logic goes, rightly constitutes the elder’s primary identity as “patient” and determines her living environment as increasingly estranged from normal life and ruled by medical structures. Rejecting a declinist orientation, Thomas maintains that while growing old entails elements of decline, “the larger truth is that aging is a complex, multifaceted, and poorly understood component of normal human development.”
While the facility where I served as a chaplain was well run, the staff most often warm and caring, with an atmosphere of community spirit often emerging among the residents, it was ultimately still a clinical regime. I observed the residents anxiously line up (or, lined up) for their medication before each meal; residents were interrupted no matter their present activity to be given their pills; residents had little privacy, ever under the watchful eye of the clinical imperative to prevent falls. There were nurses’ stations, medication carts, long corridors, noisy common areas, and few small cozy spaces. Residents’ rooms had ceramic industrial-grade floors and harsh overhead lighting. Floor staff wore scrubs. There were dining hours and showering schedules. A four-digit code punched into a metal keypad unlocked the doors of the dementia unit.
The events that precipitate this mass displacement of elders from their homes are not highly visible communal catastrophes. No disaster—no war, flooding, famine—initiates the everyday expulsion of elders in modern America. The processes are slower, more covert, and less openly violent than other forms of banishment, and perhaps that accounts for why we have been slow to name the injustice. Old persons in the United States are not deported at the hands of conquering nation-states, but rather they are moved, more often than not, by loving caregivers. They are not going to places called Fort Lincoln Internment Camp or Willard Asylum for the Chronic Insane, but rather they move to places with names like Sunnyside Gardens or Seaside Manor.
