Synopsis
A Bittersweet Season In telling the warmhearted story of caring for her own aged and ailing mother, "New York Times" journalist Gross offers indispensable advice on virtually every aspect of elder care--an essential guide for anyone navigating this unfamiliar, psychologically demanding, powerfully emotional, and often redemptive territory. Full description
Extrait
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...
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