ETHICAL CAREGIVING IN AGING AMERICA
I am the son of an old, old man. If my father heard me refer to him this way, his feelings would be hurt. In his head he is still young—he cannot remember from one minute to the next that he can’t lift himself from a chair and needs the assistance of a strong arm and a walker to get from the living room to his bedroom. Once up and balanced on his unsteady legs, he will say: What happened? What’s wrong with me?
He wouldn’t understand that when I refer to him as one of the “oldest old” I am using a gerontological term, a term of art that designates the fastest-growing demographic segment of American society, those over eighty-five. Caring for people like my father is my art, and I have spent my life—the last thirty-plus plus years of it—in the service of my patients as an internist and geriatrician.
This is a book about my life as a doctor, as the son of an “old, old” man, and as the surrogate son for many of my patients over the years. I think of this book as part memoir, part manifesto. It is about my life in medicine, my evolution as a doctor of the oldest old and the changes I have witnessed in my profession. At the center of this story is my family–my parents, especially my father. I am who I am today in good measure because of him.
In 2005 I wrote an essay titled, “What Are We Going To Do With Dad?” This piece described what it is like, from my vantage point as a doctor specializing in geriatrics, to witness my father’s descent into disability and dementia, my mother by his side. The piece was first published in Health Affairs, a health policy journal. An excerpt appeared in the Washington Post and from there it was syndicated in papers across the country. I had intended this essay to add to the national conversation Americans must have about how we will deal with our impending flood of elders as my generation ages. I was not expecting the response: calls for my appearance on NPR’s The Diane Rehm Show and Terry Gross’ Fresh Air, interviews on local radio and television shows in my hometown, invitations to speak at national gatherings of healthcare providers, to present grand rounds at academic medical centers, to author a column on aging and elder care.
But most of all, I was not prepared for the e-mails and letters—thousands of them–I have received from around the country and the world. I have spent my years as a doctor solving problems—social as well as medical–that arise in my patients, one at a time, in my office examination and consultation rooms, or at their bedsides in hospitals and nursing homes. Suddenly I was receiving hundreds of messages a day: pleas for help and advice for an elder parent or an ill spouse; heartbreaking stories of neglect and loneliness; disappointing encounters with medical professionals; nightmarish tales of end-of-life suffering; deep expressions of guilt by children living far from home; requests for appointments by elders living in other states; and advice on how to die quickly and painlessly. I brought up my e-mail each day with a feeling of inadequacy and sometimes even dread.
I am not a research scientist, a policy wonk, 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 problem with a reasonable fund of knowledge, a modicum of common sense, and a large dose of honesty.
Today there are 4.5 million people in our country among the “oldest old.” Only one in twenty is fully mobile. Fifty percent are cognitively impaired. Perhaps your parents are among these. Or your spouse. Or maybe even you yourself.
By 2030 there will be seventy-two million people in America over sixty-five and almost ten million of them will be among our “oldest old.” By 2050 this fastest growing demographic segment of our society—those over 85–will quadruple today’s numbers.
I wish I were bold enough or smart enough to write a book titled: The Ten Things You Must Know to Help Your Parents Through Old Age and You Through Your Own. This is not that book. Anyone writing such a book may 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 our situation alone.
We all search for answers; we all want to do the “right thing” for our parents, for the sake of our life partners and ourselves, and, of course, for the sake of our own children. And yet we often don’t know what that “right thing” is. I certainly don’t pretend to have all the answers.
Every family travels its own path with loved ones at their life’s end and discovers that at this destination what remains is only memory. When that is gone, as it is with my father, it falls to me, the son, to gather the threads of our old life, weave them into the tangle of our present circumstances, and make some sense of it all. It is my hope that this book, my family’s story, my patients’ stories, will enlighten this journey.
So I find that I am writing this book for two reasons. I am searching my past—as a son and as a doctor–in an attempt to come to terms with my father’s and my mother’s aging process and impending demise, knowing full well that I am next in line. And while I say that this is not an instruction manual for aging, I am also writing it in the hope that these stories will, in the end, resonate with you and your loved ones. Perhaps you will glimpse in the splintered light of these words, filtered through my personal prism, a glimmer of your own truth.