by Tom Wade
I
Late on a May afternoon, I got a call from an aunt of mine. She said, “I’m sorry I never call you with good news,” and told me my cousin, her son, had a stroke the day before and was in a hospital intensive care unit. At first, she wasn’t sure if he would live, but he survived. Over the next few weeks he made slow progress, and he was moved to a nursing home about twenty minutes down the road from his mother. When his condition improved, I knew I had to visit my aunt and him.
It’s eight hundred miles to where they live, to where I grew up, to the place I consider home whenever the question of “home” arises. Although it’s where I came from, I know few people there. I left forty-five years ago, and my experiences since then have little in common with those I know—mostly relatives—who still live there. Despite our differences, for reasons I think I understand but don’t, I remain attached to my family, even those I barely know. Evolution, I’ve been taught, has instilled this sense of belonging. When kin are in distress, I will identify with them.
Though there are several relatives from my parents’ generation still alive, I only keep in regular contact with an aunt in the Midwest—the woman who called me about her son’s stroke. She’s getting old, eighty-nine, and uses a walker because of her bad back; yet she remains alert with what I consider to be excellent hearing (a problem I have a feeling I’ll be dealing with in a decade or two), and she’s as compassionate as ever. But as she ages, her worries are increasing. Besides her incapacitated child, her daughter and eldest granddaughter have lost their husbands within the past three years. Although it’s not always evident to an outsider, sadness tinges everything she does. Events are no longer leaving pleasant memories.
My cousin dwells—trapped (not his word, but his feeling)—in a nursing home. His voice has grown gravelly, though it is clear what he’s saying. He’s attentive, can follow a conversation, knows people around him, and is aware of his schedule. Occasionally he gets facts wrong such as not remembering who has come to visit or the times of appointments. These lapses, however, might be as much a result of aging as the stroke; he’s sixty-six. He has limited mobility due to the paralysis on his left side, and needs help getting out of bed, getting dressed and going to the bathroom. Using his right hand and right foot he is able to scoot around in a wheelchair, which allows a modicum of independence. In addition to the brain damage, he has diabetes and arthritis.
He is in a semi-private room with another man, and they are unalike. Much of the day, the roommate is on his computer; my cousin watches TV. The roommate is quiet, almost studious; my cousin is gregarious. “I never thought I’d end up in a place like this,” he told me. When I was eating a meal with him in the dining room, he bemoaned, “Look around, this is the future.” I looked around, and the view was disheartening—old people eating tasteless food, some of them being spoon-fed. My cousin was lost. He couldn’t define himself; he was defined by where he was and how others treated him.
The atmosphere in this facility, whose inhabitants are disabled and dying, is lonely and despairing. Although he doesn’t want to be here, my cousin had witnessed and endured suffering and disappointment—his life had not been easy; he could bear up in this setting. But his situation was worse than he had thought. Unbeknown to him, his medical expenses resulted in the loss of his house (the balance on the mortgage he owed was more than the house was worth), his Silverado pickup, and his Harley-Davidson. A small pension paid for part of his care, but Medicaid, the health insurance for the poor, covered the bulk of his expenses. The social workers suggested to his family that this information be kept from him until his condition improved.
What was critical to him were the thoughts and feelings of other people. He sought and relished being around family and friends. He joked with the staff and teased some of the other residents, but when I, or any visitor, got ready to leave, he cried. A few relatives routinely came—his mother, daughter, sister and niece—but companions and buddies didn’t come by. A friend since childhood excused himself from visiting by claiming he, the so-called friend, had nothing to talk about. While he didn’t bring it up with me, my cousin was sensitive to these slights, wondering out loud to his mother why the people whose company he enjoyed didn’t drop by to see him. Being rejected—not because of who he was but because of where he was and his infirmity—was oppressive. He felt first-hand the stigma of residing in a nursing home.
II
We were only eight months apart in age. Though we lived over twenty miles from each other, as a small child I’d occasionally spend time with his family on their farm, and when older, he would occasionally spend the night with me. He was bold, not hesitant in getting eggs from under angry hens and ignoring charging roosters. At around age ten, he would clamber down twelve feet of rope out a hayloft door; a feat I didn’t have the nerve to do. When in his early teens, he began smoking cigarettes in a ravine (what we called a “holler”) on their property; he was caught a time or two, but his dad’s whippings didn’t deter him. And when he got his driver’s license, he drove fast and skillfully reckless. Notwithstanding the eighty and ninety mile bursts on the Missouri highways and the drag races on isolated blacktop roads, he was never in an accident with another vehicle. In addition to being daring, he was obstinate.
In his senior year of high school, he had met all the graduation requirements except one, passing world history. History requires reading boring books, listening to boring lectures, and he had other, better ways to spend his time. His dad went to the school and was told his son could get credit if he passed a test (he failed the class when he was a sophomore), and was handed a thick book with gray covers for his boy to study. I was working for his dad the summer after my cousin’s senior year and I heard about the test, which he had to pass before the end of the summer if he was to get his diploma. I didn’t see him open the book, and despite his dad’s threats, he didn’t study for the exam and never became a high school graduate. When talking about what he would do, he said he wanted to farm, just like his old man. And he noted his father (and mine, for that matter) didn’t go to high school, and yet he was able to support a family. He married that summer, and I made plans to go to college a year later. For the next forty-five years, we followed divergent paths.
Though elderly, my aunt is self-sufficient and thus, at first blush, I had no reason to feel more than sympathetic; but seeing the painful effects of her back condition on her mobility and seeing the sorrow brought on by the mistakes and misfortunes of some of her family, I understood why her sentiments were hopeless. My sympathy deepened to heartfelt sorrow. And seeing her son, the stroke victim I played with as a small boy and labored with as a teen, had a poignant impact on me, which was as affecting as my feelings about his mother’s circumstances. Although there is pity, I’m also saddened and frustrated by his situation. The pity initially separated me from him: I felt bad because he was unhappy, but I wasn’t feeling his unhappiness. Yet when he said he didn’t want to spend his retirement in a nursing home, I had a sensation of helplessness and the unhappy realization he was living in his last abode. And someday this could happen to me.
Compared to his sister, niece and brother-in-law, my bond with my cousin had a distinct quality. Not only had I known him for as long as I can remember, we had shared experiences. Working for his dad, we hauled hay together, and when I stayed with his parents, we carried out the routine tasks of a farm family, such as feeding the chickens and milking their cow. On warm Friday evenings, we went to the drive-in theater together. I did this over a couple of summers. The normal interactions from being cousins established a conventional connection between us; the adolescent summers created a special connection, one marked by empathy.
III
In the decades between his adolescence and old age, my cousin and his mother had an up-and-down relationship. When her husband died, she moved out of the house she owned and gave it to my cousin because he didn’t own a home. He was living with his third wife, a prescription drug abuser, and at her urging, sold it. For years my aunt and her daughter refused to talk to him. But he eventually divorced, and though in debt, worked hard to bring stability back into his life. The estrangement ended. Whereas she told me about her son’s cashing in on the property she bequeathed, voicing her anger, my aunt was the first to let me know when they reconciled. In that update, she related a simple story that demonstrated his character. A friend had committed suicide and his wife didn’t have the resources to pay for the funeral without going into debt, so to have a decent burial, she tried to sell a pickup truck her late husband had rebuilt. She wasn’t having any luck, until my cousin bought it.
The night before I left, I paid a visit to the nursing home. My cousin was grappling with a problem: The only place for the television in his room was between a window and a corner, but he had difficulty seeing the screen. The best remedy was to buy a bracket that would extend the TV from the wall. Albeit a minor contribution, I wanted to buy it for him so I could help in some way. When I got home, I called his mother and offered to purchase the bracket; but she replied they would pay for it from a small cache of funds he was allowed to maintain. Her tone was gentle, but what she felt was clear: In her mind accepting the gift would be accepting charity. And while occasionally needed, charity is always embarrassing and, in her world, usually demeaning. My intent was altruistic, but my good acts weren’t needed. There are times when being helpful isn’t feasible. I was slowly learning that often our deeds, the ways we treat the vulnerable and weak, can be unproductive; a lesson my aunt was teaching me as she asserted her son’s dignity.
In my visits to the rural, small town Midwest to call on people I’ve known all my life but whom I seldom see, I’m struck by fortune’s caprice and unfairness. In retrospect, I had attributed my circumstances to diligence—implying those less fortunate are responsible for their circumstances—but I now know it wasn’t diligence, it was luck. We place responsibility for others’ plight squarely on their shoulders, lest we bring into question our own good luck. And in making this assertion, we are wrong.
Tom Wade is a retired state government employee. He had been an ombudsman volunteer (advocate for residents) for long term care facilities for over four years.