Prologue
Finding Our Better Selves
The day I started writing this book, I spent hours commiserating by telephone with three friends who were being turned upside down by the needs of their aging parents.
One lived a short distance from her mother, who was in precarious health, bouncing back and forth between home and hospital, unwilling to consider a retirement community or nursing home. For months, without time to rest and regroup, my friend, herself nearing the end of a fatal illness and keeping it from her mother, had managed a series of medical and home care emergencies. She was running on empty.
The second friend, rocked by the financial strains and childrearing conflicts that often follow divorce, had largely abdicated to his siblings the demands of long-distance supervision of two increasingly disabled parents, one lost in the fog of Alzheimer’s disease and the other plagued by stress pain and the broken bones of osteoporosis. When my friend tried to do his fair share of the work, he was overwhelmed. When he didn’t try, he was conscience-stricken.
The third friend was considering making a cross-country move to be closer to his mother, who was then past ninety and losing her customary verve. Driving had become risky, and her once-daily walks to the store or the library were just too much sometimes, now that simply dressing or preparing meals took so much energy. My friend knew his mother needed more from him than three-times-a-day phone calls. And he wanted more from her as their time together dwindled.
Before that day was over, I had also spoken to each friend’s mother, as I do regularly, since all of them are dear to me. What they had to say, unbidden, was the flip side of my earlier conversations with their children. These three strong-willed old women were grateful for their children’s devotion but resistant to giving up the reins. They were embarrassed by their own diminished capacity and frightened of what lay ahead, but nothing was worse, they said, than being a burden. Like my mother, who died in 2003, they fought dependence, even as it became inevitable.
All of my conversations served as a fitting reminder that we stand at an unprecedented demographic crossroads. Never before have there been so many Americans over the age of eighty-five. Never before have there been so many Americans in late middle age, the huge baby boom cohort, responsible for their parents’ health and well-being. Most often, neither the aged parents nor the adult children are prepared for this long, oft en tortured, time in life, or for these role reversals, which are unanticipated, unwelcome, and unfamiliar. How do we become our parents’ parents without robbing them of their dignity? How do they let us? How do we collaborate with our siblings, leaving behind any baggage we may have with them, or manage on our own if we are only children?
The task is to get through it with grace, mindfulness, and good sense: to do the very best we can for our parents without sacrificing the lives we’ve built for ourselves—our families, our jobs, and our own fi nancial future, which is the last thing they’d want us to do. But how do we know when it’s still appropriate to aggressively pursue medical care, try to fix everything that’s broken, and restore our parents to a measure of health, vitality, and dignity? How do we know when, logistically and financially, we must break a solemn promise not to “put them away” (and how do we forgive ourselves for doing it, if we must)? How do we know when the time for heroics has passed? Our parents may have escaped earlier threats to their health—strokes, cardiac events, cancer—and lived longer than any generation before them, but eventually some things are just going to wear out. Their death certificates will say they died of heart failure or diabetic complications or respiratory failure, because the government has decreed that “old age” is not an acceptable cause of death. I beg to differ. At a certain point, the wheels simply fall off the bicycle.
So here we are, not just with a herculean job but with a front-row seat for this long, slow dying. We want to do all we realistically can to ease the suff ering, smooth the passing, of our loved ones. But we also have the opportunity to watch what happens to our parents, listen to what they have to say to us, and use that information to look squarely at our own mortality and prepare as best we can for the end of our own lives. In fact, we have the opportunity to become better people, wiser and stronger, not simply older and grayer. We can make something of this crisis, or we can endure the experience until it’s over and then escape back into the daily buzz of our lives until suddenly it’s our turn.
That is what this book is about: how we get through this time, no matter how long it lasts. It is written from the far shore of caregiving, an allconsuming and life-altering experience that wrings you out, uses you up, and then sends you back into the world with your heart full and your eyes open, if you let it. First and foremost it is my own story—mine, my mother’s, and my brother’s—the one I know best. But it will be amplified and enriched, at every turn, by the people I’ve interviewed on this subject over the years as part of my job for
The New York Times—the elderly, their adult children, professionals in the fi eld—and more recently by the hundreds of thousands of monthly readers of the blog I launched for the Times, called
The New Old Age, the first such forum for two intersecting generations finding their way through a timeless challenge but never before experienced in these daunting new ways or in these numbers.
Although my caregiving days are behind me, they are vivid still. In the space of three years, between 2000 and 2003, my mother’s ferocious independence gave way to utter reliance on her two adult children. Garden-variety aches and pains became major health problems; halfh earted attention no longer sufficed, and managing her needs from afar became impossible. The time had come for my mother’s reverse migration, from a retirement community in Florida to another in New York, and in short order to a nursing home. By the end of her life, at eighty-eight, she was paralyzed, incontinent, could not speak, was losing the ability to swallow, and wanted nothing so much as a dignifi ed way to die.
Those are the bare-bones facts. Missing is the panic of being in charge; and the shock to my brother, Michael, and me when our competence and resources proved all but useless in the face of America’s incoherent and inadequate safety net for the frail elderly. We were flattened by the enormous demands on our time, energy, and bank accounts; the disruption to our professional and personal lives; the fear that our time in this parallel universe would never end and the guilt for wishing that it would. I can tell you now that it was worth every dreadful minute, a transformative experience. But at the time, living in the eternal present tense, all we could manage was muddling from one day to the next.
My brother and I were late children, so we reached this juncture before our friends and colleagues, who, innocent of experience, telegraphed the belief, painful to us, that we were exaggerating how awful it was. Only occasionally did they say it out loud, but in the silence between sentences I could hear judgment:
This can’t be as hard as you’re making it sound. Old people get sick and die all the time. This isn’t your child, or your spouse, or yourself. It’s inevitable.It was a lonely time. I was too tired and too sad for socially appropriate chitchat; I emptied the room at cocktail parties with gloom-and-doom stories nobody wanted to hear and quickly found it easier to just stay home. My brother, luckily, seemed to cross more easily between these disparate worlds in which we found ourselves.
At work, I tried to keep pace with my job while fi elding my mother’s incessant phone calls, chasing down doctors, phoning in prescriptions, hiring geriatric care managers and aides, arguing with my brother, fighting back tears, and dashing out of the newsroom for emergencies. Had I been a parent, I might have been just as stressed, but part of my energies would have been invested in a child’s bright future. Old people may have good days, and it was my job to maximize those for my mother, but they don’t have bright futures.
Among my somewhat younger friends and colleagues, the fear and confusion I remember has now become commonplace. I hear it from behind the partitioned cubicles at work, in weary discussions on the train platform or in the supermarket checkout line, at business meetings with people I barely know. A total stranger confides his feelings of guilt at letting his sister do all the heavy lift ing. Another, ashamed, says he recoiled when shaving his father for the fi rst time. A third is at her wit’s end because her parents, usually frugal coupon clippers, have for months been paying rent at an assisted living facility but still refuse to leave their home. A fourth cannot aff ord home care for his mother and wants her to end her days in his house but wonders at the eff ect on his children.
The same day that I tried to console my three friends, and their mothers, I had an appointment with my internist, who spent half the visit telling me about her mother’s ups and downs since her move to a continuing care retirement community. When I spoke to my literary agent, whose father was in failing health and would die within months, she was passing the caregiver’s baton to her brother on the eve of an overseas vacation. Colleagues wanted to know the cost of a home health aide, an explanation as to why adult diapers fit women better than men, and product reviews for medical alert pendants and staircase chair-lifts. I also bumped into a neighbor w...
“A forthright story and trenchant advice . . . Gross’s chronicle of her mother’s decline is intimate and affecting, and her advice to readers is insightful . . . A Bittersweet Season manages to send its voice aloft, its two parts harmonizing in sorrowful, haunting song.”
-Annie Murphy Hall, The New York Times Book Review
“[Gross is] an incisive reporter with a fine eye for detail . . . A Bittersweet Season is sure to become required reading for anyone with an elderly parent who depends on long-term care.”
-Associated Press
“This is tough stuff, and Gross writes movingly about the toll it takes on her and other caregivers. Although her tone is often darkly humorous, she’s serious about documenting the often hidden workload borne by middle-aged daughters and sons.”
-Kate Tuttle, Boston Globe
“Nothing can fully prepare you for the overwhelming experience of caring for your elderly parents, but Jane Gross’s new book, A Bittersweet Season, comes awfully close . . . Gross is an incisive critic of our systems and institutions.”
-David Takami, The Seattle Times
“An invaluable guide . . . One thing is for certain: Individuals, families, medical professionals, and our society’s institutions have a pressing moral duty to reform our failing systems of care for the fragile old and dying. Jane Gross’s excellent book can help us do better on all these fronts. Middle-aged adult children can read with their parents and help prepare themselves and each other for the inevitable. Families can be encouraged to have those difficult conversations. Jane Gross has taken her own painful experiences and worked hard to give needed help to us all.”
-Sidney Callahan, Commonweal
“A Bittersweet Season is sure to become required reading for anyone with an elderly parent who depends on long-term care . . . The time to read the book is before the crises begin to mount.”
-Winston-Salem Journal
“Accessible and always compassionate . . . Readers may pick up this very well-written book to learn about taking care of their own ailing parents, but will soon realize that it’s also a wake-up call to become educated in order to make informed decisions about their own inevitable aging.”
-Sandee Brawarsky, The New York Jewish Week
“Poignant . . . Both heartwarming and heartrending.”
-Edith Paller, Haaretz
“Smart and highly detailed.”
-Meredith Resnick, Psychology Today
“In A Bittersweet Season, Jane Gross combines her unique perspectives as a health journalist, daughter and caregiver to unflinchingly explore the last phases of her mother’s life and death. Interwoven with this inspiring personal narrative are practical, hard to access, vitally useful lessons and information she learned along the way. One way or another the issues and circumstances vividly portrayed in this book will be faced by us all, so we would do well to use it to help us contemplate the inevitable and prepare as best we can.”
-Timothy Quill, M.D., author of Caring for Patients at the End of Life
“Jane Gross deftly weaves the story of her mother’s final days with a moving account of the toll that takes on her life and the life of her brother and the lessons learned along the way. Hers is an indispensable handbook for anyone facing the prospect of caring for an aged parent.”
-John Darnton, author of Almost a Family
“Few of us were raised, much less educated, to care for our parents at the end of life. Now that need has become commonplace, opening the door to a demanding and complex duty. Jane Gross tells us the story of the struggle she had in caring for her dying mother. It is moving and at times wrenching, but as a resourceful and probing journalist she puts her story in the larger context of how we organize health care in this country, what science is coming to know about aging, and how as individuals and institutions we can meet the challenge in ways both wise and loving. It is a book equally touching and informative, a rare combination.”
-Daniel Callahan, author of Taming the Beloved Beast
“A Bittersweet Season is a brave and compelling book by a masterful storyteller.”
-Carol Levine, director, Families and Health Care Project, United Hospital Fund
“In A Bittersweet Season Jane Gross has produced a deeply felt and beautifully written account of a journey to the emotional center of caregiving—one backed by thousands of readers’ confirming details from her New York Times New Old Age blog and her outstanding capacity as a journalist to distill experts’ knowledge of aging and late life caring.”
-Dennis McCullough, M.D., author of My Mother, Your Mother
"Hugely informative, and a gripping read."
-Betty Rollin, author of Last Wish
“Jane Gross’s book tells us that taking care of our aging parents will be emotionally demanding and potentially very expensive. In a time of financial crisis, Washington is telling us not to count on it for help. This book is an invaluable and comprehensive primer on what most Americans will face soon. Its honest and loving message is to prepare yourself now.”
-Jeff Madrick, author of Age of Greed
"With great insight and empathy, Jane Gross guides us through one of the most difficult of all life transitions—the decline and death of our parents. Not only does she provide a wonderfully helpful guide for how and what to do, and when. She also enables us to understand what our parents need, and what we ourselves need, during this passage. When the old roles reverse—as we take care of them instead of them taking care of us—we're likely to face deep challenges, as well as final opportunities for love.”
-Robert B. Reich, author of Aftershock
“Jane Gross’s journey as child of an aging and ill parent is one that too many of us will be making. How wonderful to have her mix of sage advice, pithy insights and practical discoveries at hand when and if that time comes. A Bittersweet Season is a unique and lovely book.”
-Abraham Verghese, author of Cutting for Stone
“A Bittersweet Season deals with a sobering topic. But the narrative is so lively and informative that readers will come away feeling more prepared than pessimistic . . . An intelligent guide to handling the onset of old age with sagacity and sensitivity.”
-John Slania, BookPage
“Old folks—the fastest-growing demographic of all—are indeed a problem, particularly for their Boomer kids . . . Problems like [ours] need a good, big, authoritative book, and here it is: A Bittersweet Season.”
-Ann La Farge, Hudson Valley News
“This remarkable book tackles difficult subjects with aplomb . . . A Bittersweet Season could be called a love story. While Ms. Gross freely admits the flaws in her family’s relationships, she also chronicles how a previously loosely woven connection becomes strengthened by time and trial. Reading this book and applying its lessons affords the reader an opportunity to better know and understand their parents and to prepare for the inevitable aging process.”
-Phyllis Hanlon, TOS50.com
“I raced through A Bittersweet Season in three days . . . I couldn’t put it down. Every page held valuable, practical, unexpected information.”
-Pamela Kelley, Alzheimer’s Reading Room
“Gross’s tone is straightforward, but not cold or clinical, when she shares the heartbreaking story of her aging mother, who died in a nursing home. With well-written and researched prose, Gross debunks misconceptions about assisted-living facilities and offers eye-opening anecdotes about Medicare and Medicaid, including how her own upper-middle-class mother ended up on Medicaid and virtually penniless due to health-care costs. The author also gives gentle guidance for understanding the biology and psychology of aging and ways the adult child can best help the parent . . . With a poignant, honest voice, the author recalls her mother's suffering. This book will remind readers that quality-of-life issues are important, and will hopefully prompt those types of discussions. There are no easy answers here, because there are none. A thought-provoking reso...