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Dad’s Legacy
PREFACE: "If a picture is worth one thousand words, a good story is worth many columns of statistics," wrote the editors of Narrative Matters: The Power of the Personal Essay in Health Policy (Johns Hopkins University Press, 2006) in the preface to the anthology of Narrative Matters essays. This sentiment captures the vision of the Narrative Matters section as it has appeared in Health Affairs for the past eight years. To celebrate the journal’s twenty-fifth anniversary, we thought that the Narrative Matters section should take a look at itself. To do that, we asked one of the section’s most successful authors to write a narrative about having written a narrative. Texas geriatrician Jerry Winakur wrote an essay titled "What Are We Going to Do with Dad?" in the July/August 2005 issue of Health Affairs. The Washington Post republished it, talk shows interviewed him, and e-mail poured in nonstop for many weeks. His essay stimulated not only sympathy but considerable debate about the many policy issues raised by his story; as a policy narrative, it became the grist of policy deliberation and the precursor to political action. Winakur’s new essay is a reflection on his literary/policy journey and a tribute to the power of the policy narrative.
NUMBERS NEVER TELL the whole story. Take this particular data set: There are now 4.5 million Americans among the "oldest old"—those over age eighty-five. By 2030 there will be seventy-two million Americans over age sixty-five, and almost ten million of them will be among our "oldest old," the fastest-growing demographic segment of our society. Only one in twenty in this demographic is fully mobile. Half are cognitively impaired. These are, indeed, raw data, harsh statistics. This is the demographic fodder that feeds the legions of think-tankers, that is the grist for the churning mills of policymakers. Perhaps your parents are counted here: one or two tenuous, tremulous voices in this raging sea of numbers. Or your spouse. Or maybe even yourself. When it is your turn to become the care-giver—tomorrow, next month, or ten years from now—these bits of data, painstakingly gathered by actuaries and trumpeted by policymakers, will not mean very much. The loved one you care for will suddenly become the only one, the one for whom you are responsible. You will have a real problem on your hands, and you will wonder where to turn, what to do. Sometimes, in response to a question that comes out of the blue from a mind that was once whole but now is adrift, you will find yourself at a loss to respond, not knowing what to say. These will not be easy times. I know this now from personal experience. In July 2005, when my essay "What Are We Going to Do with Dad?" appeared in the Narrative Matters section of Health Affairs, my family and I were trying to make the best of a difficult situation. My father, then eighty-six, was five years into his Alzheimer’s dementia—this on top of his many other chronic medical conditions: coronary artery disease, congestive heart failure, prostate cancer, arthritis, and progressive frailty. On most days he was uncertain who I was; often he thought I was his brother, or an old friend whose name he couldn’t recall. In his confusion, he sometimes mistook his wife—my mother—for his own mother, gone half a century ago. And yet, at times, my father, who loved the natural world, could share some grand reminiscences with me: the indigo buntings that came into our yard each summer, or our fishing trips out to the mouth of the South River of the Chesa-peake Bay when I was a boy. During those years when he was my father, undiminished, he would occasionally turn to me and say, Do you think you’ll ever amount to anything, Jerry-boy? When I was young, when I had my whole life ahead of me—and my father still had most of his—he asked this rhetorically. Of course I would amount to something; he would see to it. Still, the question always took me aback. What did I know then? I remember, as a boy, mumbling in response: "I guess so," or "I don’t know, Dad," or "Quit asking me that!"
IN MY 2005 NARRATIVE MATTERS PIECE, I described what it was like, from my vantage point as a doctor specializing in geriatrics and the son of an old, old man, to witness my father’s descent into disability and dementia. By writing about my own struggles with my father—issues we will all confront as our spouses, our parents, and we ourselves age—I intended the essay to add to the national conversation Americans must have about how our society will deal with its impending flood of elders. Health Affairs arranged to have an excerpt of that essay appear in the Washington Post’s Outlook section on 2 August 2005, and I awoke that Sunday morning to find 500 e-mail messages waiting for me. Thousands more followed over the ensuing months as this article was syndicated in newspapers across the country and after I was interviewed twice on National Public Radio. I was not prepared for this response. I have spent the past thirty-five years trying to solve my patients’ problems, one at a time, in my office examination and consultation rooms, or at the bedside in hospitals, skilled units, and nursing homes. I am not a research scientist, a medical school professor, a policy person, or a philosopher. I am not a sage or a guru. I am only a doctor, a clinical internist and geriatrician, one who has done his best to listen carefully to each patient in turn and confront every issue with a reasonable fund of knowledge, a modicum of common sense, and a large dose of honesty. Suddenly, however, during the time my essay received such wide attention, I was deluged with problems coming at me every day at an order of magnitude greater than I—in my worst nightmares as a clinician—ever thought I could handle. I brought up my e-mail during these months with a feeling of inadequacy—at times even dread. Here are some of those voices, those stories: My 91-year-old mother has recently been released from the hospital after a heart attack. The three specialists treating her gave her three different dates on which to follow up with her primary care doctor. She needs my help more than she is willing to admit. I work full-time but continue my weekly trips to visit her and I call her daily. I wonder what to do... From a daughter: I was responsible for the decisions—health, financial, and otherwise, for my mother and her sister until their deaths in a nursing home. Both had Alzheimer’s. I have seen the best of the human animal and the worst... A young college professor wrote: Though I am only in my twenties, I have thought a lot about how I will take care of my parents when they are older. (My cultural background is Chinese.) Though China has changed a lot in recent years, the old Confucian tradition...still informs us that elders are to be respected and taken care of... Another daughter wrote: My mother is one of the "old old." [Because] of her multiple health problems, she will never be active again. As my family has dealt with Mom’s declining health, it seems the one thing that no one wants to admit is that anyone is ever going to die... A son wrote: To take my dad back to his apartment would require 24/7 vigilance...$14,200 per month...none of which is covered by Medicare or insurance. What do we do? I am tripping, stumbling, failing, wondering if I will ever have a life again and scared to death of what we will do when the money runs out. A woman wrote: I have often been angry with the "helping community." ...So often these professionals would insist that such and such was the BEST course to take and make us feel guilty.... And then there are those who belittle your anger and frustration... From a gerontologist: Mom was on the edge of a coma for the last two weeks of her life and I was giving her morphine.... Every time I gave her a dose I was tempted to give her too much because it would have been so easy to do it and no one would have questioned it... From a clinical psychologist: For the first time, I was prompted to view myself not as the adult child who dutifully cared for his parent or grandparent, but the parent who will require that care from his own children... I was receiving dozens and dozens of messages like these every day: pleas for help for an elder parent or an ill spouse; heart-breaking stories of neglect and loneliness; disappointing encounters with medical professionals; nightmarish tales of end-of-life suffering; expressions of deep guilt by children living far from home, expiations often years after the fact; requests for appointments by elders living in other states and advice on how to die quickly and painlessly. I did my best to respond to each and every one, even though I had no definitive answers, no pat solutions. I listened. I responded empathically. I dispensed reassurance. Whenever it was appropriate, I tried to understand anger and urge forgiveness, assuage guilt. But who am I to be doing this? I thought. Somewhere in the midst of coping with all this e-mail, trying to say the right thing, balancing my professional training with my own personal grief—over my father, over my increasingly frail and elderly patients I lose now at an accelerating rate it seems as the weeks and months go by, over all the families struggling with loved ones at life’s end—I had a revelation: The people writing to me were, for the most part, not looking for answers. They wanted to tell me their stories, just as I had told them mine. They wanted someone to hear them, someone to listen, to understand their sadness, their frustration, their losses, their suffering. And who better to turn to, they thought after reading my essay, than a doctor who admits he does not have all the answers, the imperfect son of an old, old man?
AMONG THE MANY INQUIRIES THAT I HAVE RECEIVED —invitations to speak at conferences of health providers and advocacy groups, to tell my story at academic medical centers, to write a monthly column on aging—was one from a literary agent who suggested that I write a book. This seemed a daunting task—I am still practicing; I teach bioethics to undergraduates as well as medical humanities to aspiring doctors. But more intimidating than the time constraints was my concern about whether I had something of value to say, enough accumulated wisdom to add to our national conversation on aging. I am not bold or arrogant enough to write a book titled The Ten Things You Must Know to Help Your Parents through Their Old Age...And You through Your Own. Anyone writing such a book might be well meaning but is ultimately deluded. We are all so different, our cultural and religious backgrounds so diverse. Our family dynamics, ill fitting as they may be, fit just our situation alone. And yet my experience has taught me that we all search for answers; we all want to do the "right" thing for our parents, for our life partners and ourselves, and, of course, for the sake of our own children. But what is the "right thing"? I certainly don’t pretend that I know for sure. One of the great lessons I have learned as I worked at my profession over the years is that the "art" of medicine is the honed ability to listen. The practice of medicine—at least the day-to-day, year-in, year-out primary doctoring that I do—involves, in large measure, interpreting stories. Words, not data; nuance, not numbers are the commodities exchanged between my patients and me. I ask a few questions over and over. The answers come in an infinite variety. By listening to our patients’ stories, doctors glean and process most of the information we need not only to treat ailing bodies, but also to care for our fellow humans as unique beings. It is my job to evaluate and formulate from a constellation of symptoms and concerns and worries, from a blizzard of outside data of often questionable validity. Add to this a mix of freighted family and past medical history, a tendency toward superstition and phobia and fears, and a conglomeration of tidbits and details picked up in the mass media or from well-meaning friends. I have also learned that it is not necessarily what patients tell me but what they don’t tell me—what I observe from years of being alert to nonverbal cues—that is often even more important. Those aspiring diagnosticians who are unwilling or incapable of reading this invisible text, who study only a check-marked questionnaire scrawled by the patient while she sat in another room, or who stare remotely into a computer monitor at a robotic encounter, never understand—never begin to hear—the complete story. The art of assembling all of this information—making sense of each patient’s story—is what is now being called "narrative medicine." The name may be new, but it is an ancient art. And like any art, it must be taught and practiced. Narrative medicine is the sound interpretation of story as it unfolds in the course of the doctor-patient relationship. This newly named "medical field" is being actively touted and revived because of the realization that, as writer/physician Rita Charon points out, in a high-tech world, the time allotted for listening, for learning the art of story interpretation, is in danger of being lost. Not only is it important that we recognize the importance of narrative in clinical encounters, it is imperative that those charged to make humane public policy in health care find a way to consider both statistics and story as they go about their deliberations. If the oft-tortured thread of human narrative is absent in the debates of policymakers, they become only number crunchers—just as doctors in our procedure-oriented modern medical world become merely technicians. And our health care system—as we are seeing, as we are creating—will be sterile and unresponsive, bureaucratic, and inflexible and undignified. For all of us. For each one of us. Imagine that you are a policy wonk charged with developing public initiatives to help our nation deal with our rapidly graying population—except that you have an elderly, demented parent with whom you struggle each and every day. When you are unable to find a skilled geriatric professional to team-lead the care for your mother because funding for these fellowship programs has been cut, would you recommend that our government stay this course? When the home care costs for your bed-bound father top several thousand dollars a month, and you could be relieved of this unsustainable burden by sending him into a Medicaid-funded nursing home, something you promised yourself you would never do, would you not think about alternative—and in actuality more economical—means of spending these health care dollars in support of additional in-home services? When your "primary doc"—the one you and your family relied upon to really listen—closes his doors because he can no longer afford the overhead expense, will you send an e-mail to your bosses finally recommending a substantial revision and financial upgrade to physician "Evaluation and Management" codes instead of the same year-in, year-out threatened cuts? Or will you hold out, waiting to be saved by the technology gurus? Once this sad but increasingly common American narrative of aging, disability, and dementia is played out in your family, in your home, when the numbers, the data, the statistics become your loved ones, your spouse, your parents—and then yourself—you will finally understand how wrong-headed so much of current public health care policy is today. After thirty-one years in the trenches, I despair that meaningful change will come in time.
HERE IS WHAT I HAVE LEARNED FROM CARING FOR my father in his last years, from writing about this experience, and from listening to those who have been moved in some way by my words: Every family travels its own path with loved ones at life’s end and discovers that at this destination, what remains is only memory. And when that is gone, we must somehow gather the frayed ends of our old life, weave them into the tangle of our present circumstance, and make some sense of it all. When my father became an old, old man, after he lost his business and his self-esteem, after his bouts with depression, after his wife went back to work to support him, after he lost his health and finally his memory, that question he once posed to me would pop out of him from time to time, although its form had subtly changed. "Do you think we’ll ever amount to anything?" he would sometimes ask. In his last years, I tried to reassure: I spoke of my children—his grandchildren—my medical practice. My father listened, nodded his head, had little to say. I did not understand what he was asking of me then. Three months before my father died, I received a letter from my literary agent confirming that she had sold my book-in-progress to a publishing company. The evening I received this good news, I took the letter over to my parents’ house. My mother was thrilled, kissed both of my cheeks. "You have to tell your father," she said. I knew that I should—and I wanted to. But I feared that he might not understand. I worried that the news might upset him somehow. And, no matter what, in ten minutes he would forget what I had told him anyway. My father was in bed. He had refused dinner once again. I cajoled him up into his walker, as I had done so many times. I followed him down the short hallway from his bedroom and through the living room where my mother sat in front of the TV. I helped him into his seat at the kitchen table, filled a glass with a chocolate nutritional supplement, and set out his evening medications. I encouraged him to drink, to take his pills. I waited until he was finished. "Dad," I said, "I’m writing a book." "Really?" he said. "A whole book all by yourself?" "All by myself," I said. He slumped a bit in his chair, then glanced sideways at me. "It’s not about me, is it?" "As a matter of fact, Dad, you’re the star of the book." "I was afraid of that. No one will read it." "Dad, the book is about our family, growing up together, getting old together, dealing with sickness and aging. People will want to hear about your life story, our story." "I don’t think so," he said. "I’m getting sleepy now. Take me back to bed..." "Dad, see if you can read this letter. Or I’ll read it to you...Please." He took it from my hand and began reading. I watched his lips move and then he stopped, sat up as straight as he could, turned to me, and looked into my eyes. He had a sparkle in his eye, a half-smile on his face. "Are you bullshittin’ me?" he asked. "It’s the truth, Dad." "A book about me?" I wanted to say something, but the words wouldn’t come. I could only nod my head like a child. He called out to my mother. "Mom, is this true?" She hit the mute button on the remote. "It’s true," she called from the living room. In a gesture my father had not extended to me in many years, he held out his right hand. I took it into my own and shook it. It was bony but very warm. "I guess we amounted to something after all," he said. His voice broke and his face was suddenly wet with tears. "Yes, you did." Finally I said the right thing.
Jerald Winakur (jwinakur{at}aol.com) has practiced internal medicine and geriatrics in San Antonio, Texas, for more than thirty years. He is an associate faculty member at the Center for Medical Humanities and Ethics at the University of Texas Health Science Center in San Antonio and has lectured in the humanities at the University of Texas at San Antonio and Trinity University. His Narrative Matters essay, "What Are We Going to Do with Dad?," has been the most frequently read Narrative Matters essay ever published. (It is available without charge from the Health Affairs Web site at http://www.healthaffairs.org.) Winakur’s upcoming book, which he calls a "memoir-manifesto," is titled The Way Home: A Doctor Cares for His Aging Parents, and is to be published by Hyperion Books in 2008. His father, Leonard Winakur, died 28 February 2006 at age eighty-seven.
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Learning To Listen
My Father's Legacy
