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Living on Human Time
When I tell friends and acquaintances that my eighty-nine-year-old mother will be moving in with my husband and me, I get two kinds of stares. One kind is grave, respectful, and curious. These people congratulate me, as if I’ve passed some difficult test. The other stare is skeptical, maybe indignant. “I could never do that,” these people say. “My mother and I would kill each other inside a week.” I don’t feel comfortable with the praise, and I don’t feel angry at the indignation. What I feel, mainly, is alone. I’m not doing anything exceptional, only what families have done for hundreds, thousands of years. My Uncle Manuele, born in Italy, boasted about taking care of his parents.
“Look,” he’d crow, when we visited, “my mother and my father are with me today. Living in my house. I’m a happy man.”
But today, for many people, my choice to take care of my mother seems mystifying. I long to be with other caregivers, people willing to talk about soaping a parent’s back or folding up a walker and whipping it into the trunk of a car. I’m scared, not sure what’s required. Before my mother moves in with me, I sign up for a caregivers class held at a local Catholic church. On the first day, I park my car and meet up with another participant, Sandy Grohman, about my age. I’m instantly drawn to her, partly because we get lost together in the church complex, a network of cement buildings around a parking lot. When we straggle into the parish conference room, late, twelve people are sitting around a rectangular table. The chairs are hard plastic. There’s a thermos of bitter coffee, tiny Styrofoam cups, and a plate of cookies. We go around the table and introduce ourselves. I expect the caretakers to be cheerful, full of wisecracks and good advice, like the mothers I used to hang out with at the playground when my son was young. I am wrong. The people at the caregivers class are desperate. They’ve been driven here by hard facts, unrelenting demands.
I’m the only one with the luxury of discussing caregiving before I start. The others are in the thick of it. There’s Muriel, a slender African-American woman whose husband used to be a school principal. Now she can’t get him into the shower to clean himself. Once he’s in it, she can’t get him out. Getting him dressed is a commitment that takes hours. There’s Carlos, a devout man who brings his wife to mass every Sunday. She no longer talks to him, trapped in a world with no words. Sandy’s mother suffers from vascular dementia and a residue of anger. She has all the words she needs, and more besides. Always, she says. You’re always so clumsy. Never,she says. You never listen to me. She remembers grudges and betrayals, going back decades. She has forgotten only the good memories.
After we introduce ourselves, the two group leaders speak. Their names are Nancy and June. Nancy says that we caregivers play an important role in the social fabric. Without us, our disabled parents, spouses, and children would be institutionalized, costing society—or us—thousands of dollars per year. We do the labor that nurses would be paid to do. . .
While Nancy talks, my mind wanders. I notice that her hair is thinning, like my mother’s, even though she’s fifty at most. The parting of her hair has widened, a river of smooth, white flesh. She wears jeans and a sweatshirt, the sleeves neatly rolled up to her elbows. She looks like someone who has spent a lot of time taking care of others. She writes three words on the whiteboard with an erasable marker: Reflect. Assess. Strategize. The words form a triangle connected by curved arrows, suggesting that we will cycle through these stages again and again.
June takes over next. She’s tall and thin, with pronounced cheekbones and straight, black hair. “Over the next few weeks,” she promises, “we’re going to be sharing and learning a lot.”
Afterward, Sandy and I walk to our cars, parked at the wrong end of the lot.
“I don’t know if I’ll learn anything new,” Sandy says. “I just need someone to talk to.”
I have an hour to get to work, and I work across town. I pull out of the parking lot and head for Harris Boulevard, a high-speed road. The most important thing I have learned on the first day of the caregivers class was not on the official agenda: I have learned that I am wildly, fantastically lucky.
My mother is deaf, she suffers from anemia, she has lost a finger on her right hand, and her body is gnarled by arthritis. The arthritis medication has weakened her bones, leeching out calcium, triggering osteopenia. For weeks, she’s been in a hospital, and now she has three more weeks of physical therapy in a nursing home and rehabilitation center. Still, she has memory, language, and conversation. She is brimming with stories about her childhood. She will talk for hours about growing up in the North Carolina Sandhills, about the skinny pines and the red clay, about her grandmother dipping snuff and wringing the necks of chickens for Sunday dinner.
I’ve looked up osteopenia on the internet. I’ve seen pictures. Bone tissue isn’t solid. It’s more like a honeycomb, a living labyrinth, with negative spaces like tiny pores, as if the bone needs to breathe. But the spaces, the gaps, can grow. Darkness spreads and thrives within the thinned-out bone. Staring at the gray highway, blurred by speed, I think of the gaps in the lacework of bone. I know that if my mother loses her stories, my life will be riddled with holes.
* * *
It’s a month later, and my mother and I are making our way across the gleaming linoleum tiles of the gigantic South Park Mall. She presses down hard on the arms of her walker, feet shuffling, inching forward. I match my steps to hers. It’s like walking with rubber bands looped around both ankles. I’m taking tiny, half-steps, mincing along, my body curved in her direction like a drooping plant. I have to bend over so she can hear my words. She’s planning to buy a new bed. It must have a firm mattress, she says, and a headboard of cherry wood.
Every thirty yards or so, at the transepts where the mall’s corridors connect, couches and chairs cluster around square fountains and potted ficus trees. They are oases in the desert of marbleized linoleum. Whenever we hit a couch, my mother and I sit down. The fountain water arcs upward, splashes into the basin, then rises again. Circular lights shine up through the water, magnified on the surface. I think of the days when my son Joe was a baby. I spent hours with a friend, also a new mother, in a timeless haze. We pushed baby carriages around the mall in winter, stopping sometimes for an Orange Julius or a milkshake, buying Pampers and baby clothes.
In the months after Joe was born, clocks no longer mattered. I could spend a whole day moving between two rooms, the kitchen and the living room, the baby tucked into the crook of my arm. Vegetable soup bubbled on the stove. Black and white movies cycled through their repetitive plots on the television. Sometimes I lay on the couch with Joe on my stomach, reading. Sometimes I cantered around the room, lifting him into the air to hear him crow with joy. Sometimes I slept away a whole afternoon. And yet, I felt physically alive in a new way. When Joe’s tiny, curled fingers touched my cheek, I felt the silky slide of skin on skin. I was alive to the minute, thunderous, and varied sounds of Joe: snuffling, burping, belching, cooing, crooning shrieking.
Now, sitting by the mall fountain, my mother splays and stretches her fingers, as if she’s stroking the air. She is relieving the pressure on her swollen, arthritic knuckles. Watching her, I feel peace and sadness. I’ve taken a leave of absence from work to get her settled in my house. We have all day to search for the perfect bed, all day to wander from Bed, Bath and Beyondto Sharp’s Furnitureto the Container Store, all evenly spaced throughout the mall. We are not on the clock. We are living on human time, the time it takes one human being to put one foot in front of the other and cross so many yards of floor. Like our ancient ancestors, we are hunters and gatherers, even if we’re only hunting a bed and gathering up storage boxes and good bargains
My mother has achieved what I used to hope for: ninety years of life. When friends ask me about her, when I tell them her age, they congratulate me, as if her achievement is mine too—as if living so many years is unmitigated luck. Now, to be honest, I’m not so sure. My mother’s skin has withered and shrunk around her bones. Each movement of her legs, of her fingers, can be painful, and must be calculated in advance. She’s losing her hearing. We keep upgrading her hearing-aid, but I worry that she’ll someday be muffled in the isolation of silence.
Since my mother moved in with us, I’ve realized that there is no single right way to approach the care of an ailing parent. I respect those people who decide that they cannot care for a parent at home. I understand why my sister can’t share caretaking with me. The conditions of her life just don’t fit. She travels a lot. She’s often away from home.
And yet, I also feel that I am the lucky one. For my sister, our mother has become a new person, caught in her present moment: a lady who repeats herself, who likes to wear tweed skirts and tell the same stories over and over. Let’s face it: our society tends to quarantine our elders, whether in retirement communities, nursing homes, or assisted living. Sometimes this is a necessary thing, but it does limit us. It separates us from our present, and can render us blind to our future. I’ve had the privilege of getting to know my mother through time, as a rich multidimensional person: a series of faces, a series of selves, superimposed on each other like reflections on water. The hands that lifted me up as a small child now struggle to lift a coffee cup. The same determination is still there, in her shaky fingers. Once her ambition was to buy and refinish old furniture, giving it a new life. That ambition survives in her desire to find the the perfect furnishings for the bedroom that is now the center of her increasingly small and concentrated world.
The teachers in our care-givers’ class talked about finding a good adult daycare center, about taking time to exercise, about patience, about repeating clear directions and giving positive feedback: Turn the knob to the right. That’s it. Good job!They didn’t talk about what I’m feeling now, maybe because it’s so hard to put into words. I know that, at this moment, I’m in touch with something important, even urgent. Maybe I’m seeing myself as I’ll be decades from now. Maybe I’m seeing something larger than myself, a glimpse of what it means to be human, from our earliest moments to our last.
Elizabeth Gargano is an associate professor of English at the University of North Carolina at Charlotte.
Copyright 2018 Elizabeth Gargano