Learning to ride, falling down, getting back on
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My trailer shudders in the relentless prairie wind. Despite insulating tape on the pipes that run beneath it and the space heater I’ve put down the well pit, the water has been frozen solid for five days. Drafts force their way past the sheets of plastic I stretched over the windows back in October. When the furnace runs, the trailer is warm enough, but as soon as it shuts off, cold creeps out from the walls to take over the center of my rooms. Somehow I endure, crawling out from under my pile of quilts to start my truck every few hours so that the oil doesn’t freeze, or to carry buckets of water up the hill from the hydrant by the shed.
The paralegal calls to list for me the documents I’ll need to bring to her office in order to transfer my guardianship over my elderly father from Arizona, his former home, to South Dakota. I should have done this two years ago when I moved him to a nursing home here in Rapid City, but I didn’t know it was necessary. Now the Arizona court is demanding that I act immediately. Living trust, letters of trust, medical power of attorney, living will — I promise to bring them all in today.
When I hang up, the phone rings again: it’s my brother, who has been my main emotional support during Dad’s three-year descent into dementia and advancing prostate cancer, calling from New Mexico. He has a head cold and is so congested I can barely make out his words, but the desperation in his voice is all too clear. He hates New Mexico, he says, and never should have moved there. He’s never been more depressed in his entire life. For two days, he has been compiling a list of ways to kill himself, finally settling on a Saturday-night special. He needs my help — fast. He begs me to start out for Albuquerque today.
Feeling as if I’m abandoning my brother, I explain to him that I can’t leave with the pipes frozen, and besides, Dad is drawing inward and growing weaker. He’s lost ten pounds over the past month and is completely incontinent. He no longer takes part in the exercise program, reality orientation, or prayer services at the nursing home. Instead, he sits in his wheelchair, alone in his room, staring at the small television on his bureau. It’s obvious he doesn’t actually follow the football games or movies, but is mesmerized instead by the lights and colors that move across the screen, which has become his only window on the world.
I remind my brother that the drive to New Mexico would take me two days. I talk him into getting out of bed, taking a shower, and, if he still feels bad, going to see a doctor. I also extract a promise to call me later.
After pulling on an extra pair of long johns, I go out to start the truck and call the dogs in from the barn. Once they are safe inside the trailer and the engine has warmed up sufficiently, I gather the legal papers and a clean change of clothes, so that I can take a shower at the truck stop on my way to town.
By the time I get to the nursing home, the late-afternoon sun casts long shadows over the parking lot. I push open the heavy glass doors, dreading what I will find inside the overheated building. My father is what his caretakers call a “sundowner.” In the morning, he is at his most lucid, but throughout the day his thinking clouds until, by evening, he has become irrational and belligerent.
When I enter the room, he is slumped awkwardly in his wheelchair. He does not look up when I say hello. He seems smaller and weaker than he was yesterday and shows no interest in the Christmas cookies I bought for him at the truck stop. Usually, when I talk to him, he at least attempts to respond. At those moments, it seems as if I am his last remaining connection to his old life. It’s a heavy burden to bear, but today I miss its weight. Today I am not certain he is even aware that I am in the room.
I take his hand, which is limp and cold. Standing there beside him, I think how those hands used to be able to fix anything. When one of my doll’s legs fell off, he performed surgery with his drill and a piece of copper wire, then told me she’d had polio and needed a leg brace, just like Franklin D. Roosevelt. I remember those hands in their huge leather gloves as he knelt before the welding machine, fixing broken plow points and piecing together scraps of metal to make tools for use on our farm. And I recall the times when he instructed me to hit him on the head with a rock and put him out of his misery if he ever got so old he was unable to take care of himself.
On my way out, I mention my father’s listlessness to one of the nursing assistants. She tells me she has been worried about him, too, and that she has put in a call to his physician. If he does not improve, he will be sent to the hospital.
When my brother calls back that evening, his voice is shaky, but he says he is feeling better and was able to cook and eat a bag of Tater Tots. He tells me he feels strong enough to drive to my son’s house in Denver for Christmas, which is four days from now. If I meet him there, he suggests, I can help him think through his crisis. I have never known my brother to be this vulnerable. Feeling torn between the needs of the suicidal and the dying, I promise I will see him at Christmas.
Throughout the night, the Arctic Express continues to shriek around the corners of my trailer, rattling the tin roof so fiercely that I seriously wonder if it will hold. The next morning, when I try to crank my pickup, the engine grinds in protest. I pray, and it turns over. At the nursing home, Dad recognizes me but is not happy to see me. He looks gaunt and grayish, with dark circles beneath his eyes. He glowers at me. “Why don’t you just go away?” he says. His tongue is thick, and the left corner of his mouth droops noticeably.
I leave the room thinking, Stroke. When I tell the head nurse my suspicions, she assures me my concerns are unfounded. “He continues to eat and take his medications,” she says. “He’s alert. Don’t let your imagination run away with you. You go home and wrap your Christmas presents.”
By now, it has started to snow. The flakes, whipped by the wind, drift across the gravel road as I creep the fourteen miles home. One of my back teeth has started to throb, and my dental appointment isn’t for another week, but at least the trailer still has a roof. Once inside, I survey the sticky kitchen counter, the stack of dirty dishes, the laundry piled high in the corners of my bedroom. I consider feeling sorry for myself, but decide that self-pity is a luxury I can’t afford. I turn my thoughts toward Christmas presents, instead.
Wrapped in a quilt, I drag a cardboard box of family memorabilia over to my computer. My plan is to type up some of the letters and old recipes and bind them into booklets as makeshift presents for my brother and my son. Digging through the family archives in search of an elusive banana-bread recipe, I find my father’s old suicide note: “Ready to Die” penciled in his familiar hand on a scrap of blue-lined paper. Beneath the heading is scrawled, “Things to give up: son and daughter, three sisters, one brother, house, tools, Jeep, church friends, senior groups, close friends.”
Three years ago, when I found the note on his bureau after the stroke had disabled him, I did what I thought best: I sold his gun. At the time, I felt perfectly certain I’d done the right thing. Now I’m not so sure.
The next morning, despite the prospect of breaking a trail through wind-hardened drifts to haul the required water, I have the urge to cook. Outside, the snowstorm persists. The plow won’t come to clear the road until it stops. I have no choice but to stay put and take care of myself for a change. I put carols on the CD player and call a friend to invite him, his daughter, and her little boy to dinner the next day. “I can’t do it on Christmas,” I tell him. “It’s tomorrow or never.” He says they will be here.
Calmed by the thought of something pleasant to look forward to, I set the frozen turkey out to thaw and spend the day boiling water and cleaning the kitchen. Then I begin chopping and bagging celery and onions, baking pies, and making cornbread. In the midst of my domestic therapy, the snow stops and the wind dies down. I sort my laundry and start to feel better. When the night nurse calls to ask if I am aware of my father’s deteriorating condition, my mood plummets. If he does not improve, she says, they will definitely send him to the emergency room in the morning.
After a fitful night, during which I hear the snowplow rumble past, I call the nursing home to ask about Dad’s condition. The aide who answers is surprised by my concern. “He’s at breakfast,” she says. “When I saw him, he seemed fine to me.” Relieved, I stuff the turkey and slide it into the oven. I play the Christmas carols again, singing along and peeling potatoes while the cranberries boil and pop on the stove. For the first time in days, I have a vague sense of hope.
Ten minutes before my friends are scheduled to arrive, the nursing home calls again. Dad is dehydrated and has a fever. The ambulance is on its way.
My hands shake as I start the truck to warm up the engine. By the time my guests pull up in my driveway, I’m ready to leave. I meet them at the door and quickly instruct them on how to finish making dinner. “Just go ahead and eat without me,” I say.
In the emergency room, Dad lies on a gurney in a curtained cubicle — the same one where he was examined two years ago after he fell and hit his head. The next day, he decided he would no longer walk. “It’s too dangerous,” he told me. True to his word, he never took another step.
This time, Dad is connected to an IV bag. He lies perfectly still except for his cloudy eyes, which study the ceiling tiles. His skin is grayer than it was two days ago, and his white hair sticks out in all directions, like a nimbus. He does not answer my questions, but when I squeeze his free hand, he attempts to squeeze mine. We stay like this for a good two hours, our silence interrupted only by medical personnel wheeling in portable x-ray equipment and an EKG machine.
When Dad falls asleep, I sneak off to the lobby to call my brother and tell him I won’t be able to make it to Denver tomorrow. His phone rings and rings: he’s probably already on the road.
Back in the emergency room, I talk with the doctor who examined Dad. She is substituting for his gerontologist, who is out of town. Although his pulse and blood pressure are fine, his heart has an arrhythmia, and his sodium level is dangerously high. “Obviously, he has stopped eating and drinking,” she says, and then leaves to check on another patient.
I suspect that my father’s refusal of food and fluids is a purposeful act. When I ask him if this is his choice, he nods in confirmation, then closes his eyes and smiles peacefully.
As soon as the doctor returns, I inform her of my dad’s living will, with its “no force-feeding” and “do not resuscitate” clauses. Regarding me suspiciously, she tells me it is in his file and that she has already read it. Then she shows me the results of his CAT scan: no evidence of a recent stroke, but so much atrophy that, in her opinion, he is incapable of intentionally refusing food. She warns me against ascribing to him motives that he may not have.
“We need to get him rehydrated and find out what’s going on,” she tells me. “We need to be on the safe side until his doctor gets back.” She writes orders to admit him and continue the IVs. “He’ll be just fine,” she says.
I tell her about my brother’s crisis and my urgent need to get to Denver. She advises me to go ahead with my plans. Dad’s vital signs are strong, she says, and if there is a change in his condition, the hospital will call me at my son’s house. In the meantime, they will rehydrate him slowly, which requires hospitalization for several days. To rush the process would risk a seizure.
Once Dad is settled into his room, I kiss his cheek, tell him I love him, and then drive back to my trailer. The windows are steamed over from all the cooking. My friends, who have waited for me to arrive before eating, begin covering the kitchen table with bowls of mashed potatoes, stuffing, and corn. As we eat, I look over the living will and power of attorney. I’m so busy reading, I do not taste the forkfuls of turkey I automatically chew and swallow.
The words that seemed so precise eight years ago, when such circumstances were hypothetical, now seem as hazy as my father’s mind. The living will states that, if Dad is diagnosed as “terminal” (which he has not been) and if life-sustaining procedures would only artificially prolong the dying process, then I am to insist they be withdrawn or withheld and that he be allowed to die naturally. He is to receive only the medication, food, and fluid deemed necessary to make him comfortable.
The medical durable power of attorney does not require a terminal diagnosis. According to it, once the quality of my father’s life has deteriorated to such a point that he “cannot function interactively with other people, whether mentally or physically or both,” I have not only the right, but the duty to stop or withhold feeding and fluid.
After we finish eating, my friend’s daughter does the dishes. I am bad company, I know, but I cannot help it. As my guests leave, they offer to feed my dogs while I am away. I pack a suitcase of dirty clothes to wash at my son’s house and go to bed early so that I will be rested for tomorrow’s eight-hour drive.
I dream that my father is an empty sack of gray skin lying on the floor. Only his head retains life. He pleads with me to let him die, but I ignore his wishes and clamp my mouth over his to give him CPR. His limp body inflates with each breath. My mother, who has been dead for fourteen years, stands behind the door, silently watching us. I know she is waiting for me to give up on him, but I persist. He is almost back to normal by the time the alarm wakes me.
On Christmas Day, I fire up the truck and head to the hospital before sunrise. Dad is propped up in a lounge chair when I enter. I take this as a good sign. I ask him how he is doing, and his mouth moves, but no words emerge. I do my best to lift his spirits and explain to him that I will be back tomorrow. When I take his hand, the flesh is warm and his grip is tight.
The roads are dry until Wyoming, where wind and the weight of tires have polished the packed snow to a treacherous shine. Interstate 25 is lined with abandoned cars and a few overturned semis. My foot on the accelerator, I pay them little heed. Instead, I remember how I named my first rubber baby doll after Dad. Now he is as passive as that doll. He, too, has to be fed and wets himself. Every once in a while, his eyelids open, and he stares at some fixed point. Sometimes I suspect he might be as hollow as that doll, too. Perhaps he will eventually rise up and float away, like a balloon. For now, he is tethered to the earth by a few feet of clear plastic IV tubing — because of me.
By the time I reach my son’s house, my brother has already arrived. His cold is on the wane, and he blames the illness for his mental turmoil of three days ago. When I question his miraculous recovery, he says that he is fine now, thank you. He has decided to move away from Albuquerque. Case closed.
My son and his wife offer me leftovers from Christmas dinner at her sister’s, and after I’ve eaten, I pull the living will and the power of attorney from my suitcase. A coward at heart, I insist that we need to establish a consensus on the meaning of “comfort,” “feeding,” and “quality of life.” The others read the papers carefully, then shrug. “You know how he felt about getting old,” my brother says. “I think you should pull the plug.”
“Just do what’s best, like you’ve always done,” my son advises.
Later, swaddled in blankets on the sofa, I close my eyes against the Christmas-tree lights and dream that Dad and I are walking hand in hand toward a church on a hill in the distance. Unlike when I was a child and had to take two steps to match one of his giant strides, now I must slow down, taking tiny steps to accommodate his excruciatingly slow pace. As we approach the entrance, my father lets go of my hand and continues walking. I stand there, knowing that I cannot follow him, not yet. He turns and waves to me, then continues forward alone.
The next morning, I leave for South Dakota while the others are still asleep. Upon returning, my first stop is the hospital, where the nurses tell me that my father’s sodium level has come down, but is still terribly high. Dad doesn’t seem to recognize me and refuses to talk. I sit by his bedside and hold his blue-veined hand for a while, surprised at how much his hands have shrunk in the past two years. They are the same size as my own.
That night, just in case, I search through his papers for the phone number of the funeral home back in Michigan, where Dad wants to be buried next to my mother. I rummage through my closets to find his suit, so I can take it to the cleaners. He is so tiny now that he will be swimming in it — but then, I imagine the funeral-home directors must be used to making alterations. It is a ghoulish thought.
I call my aunt in Michigan to tell her of his condition. She advises me to write his obituary. “Even if he pulls out of this, you’ll be glad to have it done,” she says. After I hang up, I write a rough draft and then page through Dad’s worn Bible, selecting some of the verses he marked. I make a list of his favorite hymns, for a hastily planned memorial service.
The next morning, Dad’s regular doctor is back. Optimistic about my father’s condition, he orders up a chest X-ray and more blood work. “He’ll pull through,” he tells me. I know he expects me to be comforted by this. I am not.
I explain to him about the wishes Dad has expressed throughout his life. I tell him that the whole family agrees that, if Dad were in his right mind, he would want to slip away peacefully and without intervention.
The doctor looks at me through narrowed eyes. “We’ll get him rehydrated and see if there’s anything going on that we can cure,” he says firmly. “Now isn’t the time to give up.”
I spend the next three days by my father’s bedside. His complexion turns from gray to white, and then to pink. He still refuses food and moves very little. He rarely speaks except to say, “Goddamn, shit, son of a bitch,” glaring at the IV in the back of his hand and then eyeing me with contempt. He need say no more. I am his Judas. His condition is improving against his will, and he hates me for it.
When the nurses come into the room, he smiles at them. “He’s such a sweet-natured person,” one says. I chew my lip and nod in agreement. As soon as they leave, his eyes shoot daggers at me once more.
“I know what you’re doing,” I say to him, “but for now we’re stuck. You just have to play the game until you get out of here.”
The doctor says he will remove the IV if Dad begins eating and drinking. Dad swallows a few spoonfuls of soup and drinks half a cup of water, and the nurses unhook him.
Later, when Dad and I are alone in the room, I open the can of nutritional supplement on his table and offer him a sip. “I don’t want any of that shit,” he tells me, his capacity for speech returning. So I feed him soup and fruit cocktail instead. After four bites, he tells me it is all crap. “Bullshit,” he says. “Just plain bullshit!” Silently, I agree.
His hands are folded around a paper napkin, and when I try to remove it from his grasp, his fingers won’t budge. His mouth works for a few seconds, and then the words spill out like bile. “Just rip the damned thing away,” he says. “I can’t let go.”
The day he discharges my father, the doctor tells me that, contrary to the findings of the CAT scan, he believes Dad has had another stroke. “We’ll put him on physical therapy and see if we can get him back to himself again,” he says. I wonder if he is aware of the dark irony in his words.
Three nurses are required to transfer Dad to his wheelchair, rather than the usual two. Once settled into the chair, he slumps to the side, his feet resting on the ground. One of the nurses tries to lift his foot onto the chair’s footrest, but it won’t budge. “Lift your leg,” she orders.
“I can’t,” he hollers at her, his face a study in shame.
Finally, she manages to hoist his leg, then struggles without success to wrestle his coat over his shoulders, which have refused to bend even half an inch for years. We give up and bundle him in a quilt I’ve brought, then pull his ski hat down over his ears. The man from the wheelchair-transport company takes over, pushing my father to the elevator, then across the lobby and outside to the van, where Dad, strapped in his chair, is loaded aboard like so much cargo.
After I’ve tucked him into his familiar bed at the nursing home, I am too tired to stay. At home, I e-mail my brother, then turn up the heat and burrow beneath a stack of blankets, feeling as though an arctic wind has invaded me. My interior landscape is filled with drifts. The tears I know I should be crying are frozen solid.
The next day, Dad and I watch television for a while before the aides come to get him for dinner. When it is time for me to go, I hug him. For the first time in many months, he hugs me in return, firmly patting my back with his good hand. “Don’t worry,” he says. “I’ll be able to . . .” He stops speaking in midsentence but continues to pat.
“You’ll be able to what, Dad?”
He thinks for a moment. “I’ll be able to take over on it,” he says in a firm voice.
I’m not sure precisely what he means, but I understand that, for now, at least, I have been forgiven.
Kay Marie Porterfield
I read Kay Marie Porterfield’s essay “Extraordinary Measures” [December 2001] with an aching sense of familiarity. I had found myself in much the same situation during my mother’s long decline, and the similarities hit me like a fist in the heart.
You occasionally print letters from readers threatening to cancel their subscriptions because some issues of The Sun are too emotionally difficult. I want to thank you for being willing to publish the stories that beg to be told.
Tonight is New Year’s Eve. My mother died last night and will not see 2002. In spite of her age, she was so tenacious and determined that I never expected her just to close her eyes and leave. I didn’t get to wish her a happy New Year and tell her that I loved her. Now I would give anything just to whisper, “I love you,” one more time. I’m writing this letter instead.