My Father's Keeper: The Story of a Gay Son and His Aging Parents (7 page)

The popular media are quick to reinforce this message about the critical role of the early years when they erroneously imply that the results of neuroscientific research on early brain stimulation can be directly translated into the design of educational environments. More toys and activities, more specialists and highly fragmented days, do not necessarily make for smarter, happier, or more engaged learners.

It’s just not that simple.

The demand for simplicity, however, goes to the heart of the problem. Adults want to believe that they inhabit a logical cause-and-effect world. After all, it’s easier to live with certainty and determin-ism than with contingency and possibility. We are reluctant to acknowledge that our connections to the past and to the children before us are messy, multidimensional, and continuously shifting.

In 1968, when I entered the early childhood classroom, I vividly recall telling people who questioned my career choice that educators can have a critical impact on children when they are very young. My best friend had taught with great enthusiasm in the initial summer of Head Start, and like him, I understood social change as a grassroots process and those roots as best nurtured in the early years.

Today, my graduate students continue to believe in the foundational nature of the early years that will set the pattern for later development. They tell me that they want to teach because they have always loved children and have never had a vocational doubt. Or, like m y fat h e r ’ s k e e p e r n 37

myself at their age, they want to change the world through education, often a more recently acquired desire. Perhaps because of the need to create a distance between past and present, and to experience themselves as responsible adults, capable of being caregivers, they emphasize the differences between children and adults. Despite the subtleties of some developmental theory and the messiness of their lived experience, students portray the road from childhood to adulthood as orderly and well marked. They have read the seminal thinkers—Erikson, Freud, Piaget—and come away with a simplified template.

While each of these theorists writes about different if overlapping domains of development—emotional, cognitive, psychosocial—they all document universal stages of development through which everyone passes, albeit at varying speeds. Change is linear, sequential, and progressive. On the way to graduate school, for example, many of my students have come to believe that the basic struggle between parent and child over attachment and separation is concluded by age three.

Caring for my parents, however, I am realizing something quite to the contrary. After all, we are still striving to understand how we are alike and how we are different. We grapple with the changing responsibilities and gifts that result from our close connection. And most importantly, I continue to learn and to know through the body, not just through words. A renewed intimacy occurs as I help my father to navigate from bed to bathroom, shamelessly discuss the daily difficulties of a bladder and bowel gone awry, or simply run my hand across the brittleness of his malnourished shoulders.

Most developmentalists would have us believe that adulthood is a time of new and therefore better powers. Theirs is a story of progress and enlightenment. But perhaps adulthood is a time in which we have expanded but not necessarily improved our tools for making sense of our experience, and when we all benefit by staying in touch with childhood ways of being in the world. It is the context that elicits and shapes our current responses, and in the context of parental care, I am almost always both child and adult.

38 n jonathan g. silin

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When I arrive at my parents’ house late that August night, my father is still refusing to go to the hospital. He is waiting up for me along with my mother, the aide, Marlene, and Anne, my twenty-three-year-old niece. He is seated in a wheelchair, barely able to hold his head up, eyes closing midsentence as his words trail off. Called to attention, he asks for yet another glass of cold water, and has sufficient strength to complain that it is neither cold enough nor full enough. In truth, he is unable to swallow at all; the smallest sip of water precipitates a coughing crisis in which everything is returned.

My father claims to follow me as I lay out the two possible scenarios—voluntary and immediate hospitalization or imminent collapse that will force us to take him to the emergency room against his will.

At this moment I cannot imagine leaving him to die at home, nor do I think he is in a condition to make such a decision.

As he nods off yet again, I remember prior conversations, not so far distant in time, that contrast dramatically with our present failed attempt at communication.

We were standing at the bathroom sink in the spring of 1997 as my father indulged in an hour-long bedtime ritual. I was leaving for an extended speaking tour in Australia in a few weeks and worried that he might have a potentially life-threatening fall by getting out of bed unassisted in the middle of the night. Neither my concerns nor his reluctance to accept help were new. But now I summoned a fresh determination to get to the heart of the matter before my trip. I asked if the debilitation caused by so many illnesses had made him want to end his life. I told him that, if he had had enough suffering, we would find a way for him to die quickly and peacefully. I didn’t know where these cool, confident words were coming from. Despite having seen recent newspaper articles, TV documentaries, and films on the subject, I had no idea how such a carefully planned death would be accomplished.

But I needn’t have worried. His slow and thoughtful reply reassured me that “No, it’s not
that
bad yet.” Reluctantly submitting to my logic, he agreed to call for help in the future.

m y fat h e r ’ s k e e p e r n 39

Now I long for the brevity and directness of this earlier conversation and feel the frustration of my protracted attempts to gain and hold my father’s attention. Neither of us is able to say the right thing.

I decide to put off further efforts till the morning.

Anne, who has waited in the living room with my mother during this private bedroom interview, wants to know what will happen if my father won’t go to the hospital in the morning. Hers is a youthful question that assumes an inevitable drama of opposing wills that can only be resolved by a unilateral decision or the use of force. I feel boxed in by the “what if” nature of her question, which poses life as a matter of stark blacks and whites rather than muted grays and partial compromises. I have no answer for her. She asks questions that I am unready for. I am only prepared to stay rooted in the present.

Despite Anne’s prodding questions that push me forward in time, her presence is welcome in an unexpected way. As I slip and slide between my roles as loving child and responsible adult, she reminds me that sometimes my years of accumulated experience can make a difference. Caring for people with HIV/AIDS has helped me to curb my natural impatience and to tolerate uncertainty and indecision. In moments of crisis, I try to stay in the present and to move cautiously; de-ferral holds open possibilities that we cannot yet calculate. Anxious talk of tomorrow draws us away from the pain of today. It functions as a distraction from suffering we cannot alleviate, wrongs we cannot right.

In the morning when I return to my father’s side, there appears to be very little change in his condition. He tries to force food and water down his throat without success, and I continue to try to reason with him. We are both getting nowhere. Then suddenly my mother, who has been silently watching and senses our stalemate, gets up from her chair, walks slowly and painfully across the room, bends over my father and, looking straight into his face, implores, “I want you to go to the hospital. Do it for me. Do it now.” I am exasperated and embarrassed by this unabashed begging. But after all my carefully worded statements about choices and control, she speaks directly from the 40 n jonathan g. silin

heart. I check my irritation, knowing that this moment is as much, if not more, hers than mine. She is learning, in her eighty-seventh year, to make a demand for herself, to cash in on their sixty-year-old marriage ticket to purchase a few more weeks, months, perhaps years of life together. She has earned the right to speak and soon earns his reluctantly proffered words, “All right, I’ll go.”

I am more sad than relieved to hear his final consent. I feel that together, my mother and I have broken his will. I tell myself that, given his severely weakened condition, my father’s refusal to go to the hospital is neither rational nor reflective of his “true” desires. I tell myself that hydration and the gastronomy tube for direct feeding into the stomach do not constitute radical interventions, though they will prolong his life. Yet confidence that we are doing the right thing seems to slip from my grasp because I keep forgetting that my father is not in possession of his faculties and that we are no longer adolescent son and middle-aged parent fighting over a curfew hour. In concert with my mother, I have helped to orchestrate a Pyrrhic victory in a tortuous battle of wills rather than the kind of collaborative healthcare decision I had hoped would be possible.

In the hours to come I am consoled by the way my father becomes calm, relaxed, and patient. Perhaps he is relieved, but I don’t ask.

While he is lying on a gurney in the emergency room hallway, an orderly offers him a cup of water. For the first time in weeks he speaks the truth, “Thank you, but no. You see, I can’t swallow anything.” My father gives himself over to the care of others. There is no dissembling in the hospital. Throughout the following week there is never a moment of recrimination, never a note of anger in his voice. He shows more consistent good humor, even his long silenced sense of humor, than he has in the preceding two years.

Later that first night, reviewing the events of the day, my niece accuses my mother and me of having forced my father into the hospital against his will. I am stung by her words, primarily because they resonate with my own doubts. I have tried to imagine myself in his body at this time. I am not terribly successful, but the exercise tells me that m y fat h e r ’ s k e e p e r n 41

there is much that I don’t know, enough so that I don’t feel comfortable making an end-of-life decision for him.

Anne can’t understand why my father goes on, given the extreme limitations of his life, but, when pressed, she is reluctant to imagine an alternative scenario to the one that has taken place: my father collapsing in our unprepared midst. She confides that she and her boyfriend have decided on permanent DNR (do not resuscitate) tattoos so that there will be no mistaking their desires. And therein lies the nub of the problem: what are the desires of my father, eighty-seven, frail and frightened?

Over the preceding days I have tried to listen to his behavior as well as his words in my attempt to assess his intentions. While he was refusing to go to the hospital, he feverishly persisted in attempts to eat, drink, and swallow medications. He even said he would go into the hospital if his cancer surgeon, halfway around the world and un-reachable just then, ordered him to go. He did not want to accept responsibility for prolonging his own life. Once in the hospital, he is an active participant in his recovery, taking pride in the total hours he manages to sit in a chair, an important element in recovery from the pneumonia with which he will ultimately be diagnosed, and volun-tarily initiates small exercises geared to improve his circulation.

While I once thought my father would not want to suffer unduly or to live with severely diminished capacities, I am learning something different. As life narrows, it becomes that much more precious.

My niece has a very different perspective. Despite the periodic career anxieties and personal identity crises that I imagine may cause her to doubt the future, she does have a lifetime ahead of her. Ripping out a few tattered, barely legible pages at the end of the book of life may seem reasonable. Most of the preceding pages have not yet been written anyway, and it is impossible to imagine the subtleties of plot that will knit together the beginning and the end of the text. At fifty-four, having passed life’s midpoint, I have begun to experience some of the inevitable failings of the body that may foreshadow the final chapters.

I have learned to live with physical limitations that would have been 42 n jonathan g. silin

unacceptable a scant ten years ago. Besides, I have known too many people with HIV/AIDS to think that we can predict the future or that death always comes at the end of a full life.

My father wants to live at all costs. He also wants to live on his own terms. When the terms are no longer his to make—if they ever were—he feels caught in a vise of unacceptable choices. He wants the feeding tube, which he sees as a sign of further medicalization and loss of control, only if additional surgery on his throat fails. At the same time, he knows that he will not live to have the surgery unless he agrees to the feeding tube. He wants the tube and doesn’t want it.

He tells me that these opposing desires are not contradictory, and he is right. Paralyzed by what he sees as untenable choices, he forces me to decide for him. I give primacy to his overriding commitment to go forward and momentarily set aside the feelings of defeat elicited by the compromises that this entails.

In the end, the story of this hospitalization turned out not to be a dramatic one of choosing life or death but a far murkier tale about my father’s further loss of physical and mental control. The underlying subtext is my assumption of responsibility for deciphering his desires.

There will be no philosophically considered, carefully modulated, Kevorkian death for my father. He will want all the interventions and fight at every turn to have his way.

I am honored by my father’s trust and the intimacy that has grown between us. At the same time, I am angered by the new burdens he has placed on me and unnerved by his refusal to make critical decisions for himself. Perhaps my head is filled with too many film and television images of people in midlife who, when faced with a terminal illness, choose to die peacefully surrounded by family and friends.