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

by Jonathan G. Silin

  Distracted by Bob’s death, my ability to care for my parents is severely compromised. That first December my brother and I decide to move m y fat h e r ’ s k e e p e r n 157

  my mother from the large apartment where we grew up and which she has lived in for nearly fifty years into her sister’s even larger apartment. There is no other choice but a nursing home. Neither alternative is acceptable to my mother. Unfortunately, my parents have long ago run out of money and there are limits to my brother’s resources, which have sustained them for several years. My mother is in a state of despair. Life as she knows it is coming to end. Her grief is deep and all too real.

  Although I try to encourage my mother’s participation in select-ing the furniture and few small objects she will take with her, she is paralyzed. I insist that the apartment remain completely intact until she walks out the front door. The chaos on the inside is not to be mirrored by disorder on the outside. Here I am undoubtedly speaking for myself as well. I cannot tolerate yet another disruption in the world I have known. I am ready to reconstruct a new home for my mother but not to dismantle the old. I leave that task to other family members.

  Having heard endless accounts from friends of ugly family squab-bles about the division of property, I arrange to go through my parents’

  apartment with my niece on an afternoon when my mother is at the nursing home. Anne and I have always worked well together and she is empowered to speak for her parents. I understand that the vase that stood for so long on the entryway table and filled weekly with fresh flowers, the set of china handed down from a favorite grandmother and only used on special occasions, and even the jewelry that made my mother appear so elegant on rare nights out, will soon end up out of sight, stored away in boxes. With this knowledge in mind, dividing up the furniture and other objects of monetary or sentimental value proceeds easily. We alternate choices, make concessions, note our sometimes different, sometimes similar sense of aesthetics, all while sharing stories elicited by the task at hand.

  Fortunately, when my mother sees her familiar possessions assembled in her new room she is genuinely pleased. It is an auspicious beginning for what turns out to be the best possible compromise for all concerned. My aunt, at ninety-two, two years older than my mother, 158 n jonathan g. silin

  is in the early stages of Alzheimer’s. Her initial worries about the loss of privacy that could happen with the new living arrangements do not materialize. Her own life is becoming increasingly circumscribed and self-absorbed. The sisters, each with her own caregiver, seem to genuinely enjoy each other’s company, and benefit from the distractions provided by the other’s visitors. My aunt, more outgoing, more able to confront life’s vicissitudes, more willing to see the positive, shares with my mother not only a ninety-year history but also a propensity for critique of the caregivers to whom they are both in reality closely attached. It is as if this dinnertime ritual of criticism draws them together for a few minutes each night, an act of resistance to their dependency as well as an evocation of an era gone by.

  While not her choice, my mother’s move was fortunate in other ways that could not have been predicted at the time. In March, after several bouts of pneumonia, my father suddenly dies. Already ensconced in her sister’s apartment, my mother has ready-made company and cannot sink into complete despair. I do not think she would have tolerated the death of my father and the loss of familiar surroundings had one followed immediately upon the other.

  I am not with my father when he dies. I visit him several days before, prompted by a call from the nursing home. Going through the giant blue binder that contains his most recent medical history, the floor nurse cannot find a “do not resuscitate” (DNR) order on file.

  Would I please fill one out or speak with my father about it?

  In the late morning of a fine March day I walk from my office to my father’s room in the nursing home. He is most alert and at his best before lunch, and my mother will not yet have arrived, a potentially complicating factor. I find him surprisingly calm and relaxed. It seems as if the bouts of pneumonia that he suffered from all winter have drained him of the dementia and extreme mood swings. I stand close by his bedside so he can see me with his good eye and hear me clearly.

  After two pairs of hearing aids disappear, we do not bother with a third. They are simply too small or too valuable to be tracked by the nursing home staff. I explain the reason for my visit. My father looks m y fat h e r ’ s k e e p e r n 159

  at me with understanding and replies in his increasingly weak but still legible print, “Of course I want a DNR order. I’ve always wanted one.”

  His tone is almost indignant. How could his wishes have not been known and carried out? “OK, Dad,” I reply with great relief, no longer put off by his minor assertions of authority. “Do you want to sign it yourself or should I?” His response, “You sign it,” is both a dismissive command and an indication of trust. Nothing is ever simple.

  After I take care of the paperwork, I return to spend an unusually easy hour with my father. One topic leads comfortably into the next.

  As I walk back to my office I am thankful for the satisfying interview.

  The clarity and crispness of the day echoes the mood in my father’s room. I know it’s been a special time but not exactly how special until several days later.

  Again it is the floor nurse who calls in late afternoon to say that the nursing home is sending my father to the hospital emergency room. They have been trying unsuccessfully over the past week to get him an appointment with a pulmonologist and have determined on the emergency room strategy as the fastest way to get him evaluated.

  I know this unhappy strategy only too well and that my father might be stranded in a hospital corridor for many hours waiting to be seen.

  Partially blind, his writing now deteriorated so that it is almost impossible for strangers to read, he may be forced to lie on a gurney unable to communicate. The nurse assures me that of course they will send his chart with him, but it is against policy to send a human being. It is not a life-threatening situation. Then why not wait until the morning, when it is more feasible for him to be accompanied by a family member? Is the situation more serious than she is willing to let on?

  How hard has the home really tried for the pulmonologist’s assessment in the preceding weeks? Is this simply bad timing, or a lack of forethought?

  I have just returned to Amagansett from New York and immediately call my brother, who happens to be in the city. He is reluctant to leave his business meeting. I explain in graphic detail what my father’s experience is likely to be in the emergency room. Within the hour my 160 n jonathan g. silin

  brother calls from the hospital, where he has been able to locate my father. No doctor has examined him yet. An hour later there is another call. A doctor has just seen my father and diagnosed him with sepsis, a severe and often fatal infection. My brother reports that even though they have started him on massive doses of antibiotics, in the doctor’s words, “the prognosis isn’t good.” I am in shock. From a pul-monary assessment to a deadly infection? When did it begin? Before he got to the hospital? In the emergency room itself, a function of a severely compromised immune system? Of course my brother can’t answer these questions, nor can I convince him to stay any longer.

  It’s close to 7 pm. I get the doctor’s phone number and am surprised to reach her immediately. Yes, she has seen my father. I push for a definitive statement about the “bad prognosis.” She is friendly and professional but resists my prodding. Finally hearing my insistence, she uses guarded, carefully chosen words to tell me that “in cases like your father’s, if he doesn’t respond to the drugs within two or three hours, he may not last the night.”

  By now I’ve missed the last bus to New York and I don’t trust myself alone on the long drive. Perhaps more to the point, I am not impelled to be with my father. I believe that our “final” moment has occurred earlier in the week, when he directed me to sign the DNR

/>   order. He was calm, in charge, almost heroic during that encounter and there is part of me that wants to remember him that way. There is part of me too that is exhausted by the years filled with all of the unheroic moments when his needs took precedence over everyone else’s. In what turns out to be this final night of my father’s life, I am paralyzed by the inevitability of another loss only eight months after Bob’s death. I keep my physical distance because I need to sustain an emotional barrier. In this way I am selfish and self-protective. These are hardly admirable emotions, hardly the thoughts of an ideal caregiver, but all too real nonetheless.

  I want someone to be with my father and in my eyes that person should be my brother. I call my brother at home and tell him what the m y fat h e r ’ s k e e p e r n 161

  doctor has said. He does not believe that my father recognizes him any longer and sees no reason to go back to the hospital. The one thing we agree upon is not to call my mother, who seems too frail to withstand an all-night bedside vigil. At 11:00 pm my brother calls from my father’s room. He has enlisted Anne to accompany him. The drugs have not taken effect and my father mostly sleeps. Why stay?

  The next day I learn that my brother and Anne wait for a while longer and then, when asked to leave the room for a few minutes while the nurses try to make my father more comfortable, leave. My father dies alone somewhere between 3 and 4 am. I am not surprised by the 5 am call with the news. It’s not like the call about Bob’s death.

  I experience no disbelief and very little emotion at all other than relief that his interminable suffering has ended and that we have managed a successful final interview. I do wonder, why now? Why not two years ago or two weeks from now? The moment of death is completely arbitrary.

  In the months to follow I forgive myself as I know my father would have forgiven me for being an imperfect caregiver, for not rushing to his beside in the middle of the night. More disquieting is the unexpected guilt that I experience when thinking about my father’s death at all. I am torn between two losses and believe that all my emotional attention rightfully belongs to Bob. Yet images of my father periodi-cally intrude into the carefully measured spaces that I have created to contemplate my life with and now without Bob. It’s an awkward, unsettling internal competition, one that neither Bob nor my father would approve, one that I hope is ended in these pages, in this attempt to make sense of the final years of my father’s life.

  I am not a spiritual person, but I am convinced that my father knew in his last weeks that the end was near and that he was prepared as best he could be. He did not leave us money and property, as he had dreamed in his younger days. Nor did he leave a public record of accomplishments that can be recognized by others, something that he hoped his children might achieve. In the last months of his life, how-162 n jonathan g. silin

  ever, my father did give me rare, profoundly moving moments of recognition. These moments, many mediated by Bob’s death, do not make up for his demanding and controlling ways that permeated much of my life. They do offer a sense of a circle completed, a life well lived, and a final set of instructions on what it means to be a caregiver to the very end.

  Acknowledgments

  Nineteenth-century images of Romantic authors writing alone in their rooms, channeling the artistic muse, still cast their long shadow over the twenty-first century. Most books more accurately reflect the complex ways that our lives are bound up with others. They are the products of socially constructed worlds as much as, if not more than, solitary, interior reflection. The acknowledgments that follow—and I apologize in advance to those whom I may have inadvertently failed to mention—attest to the collaborative nature of authorship, even of memoir.

  Many members of my chosen family helped to make life tolerable in the face of intolerable losses and understood that for better or worse, my life and my work were inextricably tied together. Thank you—Chelsea Bailey and Marshall Weber, Gail Boldt, Muriel Dimen, Allen Ellenzweig, James and John Haigney, Michael Hampton and Carlos Sandoval, Cindy Jurow, Dolores Klaich, Barry and Arlene Klingman, Michael Piore and Rodney Yoder, Eric Rofes, Erika Shank, Glenn Stancroff, Toba Tucker, and Karen Weiss. I gratefully acknowledge too the support of my Bank Street family, past and present

  —Nancy Balaban, Virginia Casper, Harriet Cuffaro, Lia Gelb, Nancy Gropper, Judy Leipzig, Carol Lippman, Mimi Rosenberg, and Edna Shapiro.

  Members of my given family have contributed each in his or her own way to sustaining my parents. My brother, Robert, generously 163

  164 n jonathan g. silin

  provided the resources necessary to keep my father out of an institution for as long as was possible and insured that my mother never entered one. Anne, my niece and coconspirator in the work of eldercare, always kept me on my toes, asking questions that reminded me of the multiple perspectives that our lives may be viewed from. I am deeply indebted as well to the emotional and practical generosity of my cousins—Jill Prosky and James Posner—without whom my mother’s final years would have been very different indeed. I am thankful too for my mother’s rare moments of laughter and good humor, which punctuated the hard times, and my aunt’s courage and wisdom in the face of adversity, which I can only hope to emulate.

  I will never forget the professional caregivers—Yvonne Calvin, Marlene Eubanks, and Sandra Mundy—who so conscientiously looked after my father at home. Despite the many trying moments, they all appreciated his humor, determination to control as much of his life as possible, and ultimate will to survive.

  A minigrant from Bank Street College of Education supported initial work on this project. The East End Writers’ Group offered sage critique of the early essays. Other colleagues willingly and insightfully read drafts of the manuscript—Wendy Fairey, Judith Levine, Jo Anne Pagano, Fran Schwartz, and Peter Taubman. My thanks as well to Bill Ayers, who always remembers and isn’t shy. Without the astute and caring stewardship of Helene Atwan, director of Beacon Press, the book would not have seen the light of day.

  In the end it was Bob Giard, my partner of thirty years, who made work on this project possible. For it was Bob who taught me how to love and how to forgive, when to fight fiercely and when to let go.

  Above all he understood that it is in the smallest acts of human kindness that we often reveal our deepest feelings and our profoundest respect for human life. It is hard to imagine entering the country of the frail elderly without him.