A Bittersweet Season

Caring for Our Aging Parents — and Ourselves

by Jane Gross

A Bittersweet Season

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Book Summary

In telling the story of her own struggle to learn how to care for her aging and ailing mother, a journalist offers helpful insights and advice to other caregivers who feel overwhelmed.

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For decades, five-time Pulitzer Prize nominee Jane Gross reported on a wide range of issues for The New York Times. Recently, she has turned her attention to America's aging population. In A Bittersweet Season, Gross relates how she and her brother moved their elderly mother from Florida to an assisted living facility in New York as she began to decline. Together, the three navigated Medicare and Medicaid after health care costs whittled away the


Excerpt: A Bittersweet Season

A Bittersweet Season


Finding Our Better Selves



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.


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.


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.





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.


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.






I can tell you how to work out a fair division of labor with siblings whose hearts are in the right place but who are not hardwired to help in certain ways. I can tell you how to appreciate assistance when you get it, how to conserve energy by avoiding unproductive resentment when you don't, and how to relax exacting standards that guarantee nothing anyone else does will be good enough. I can make suggestions about looking aft er yourself so you don't fall apart when someone else needs you, having learned the hard way. And I can ask uncomfortable questions about whether your insistence on doing everything, your way and with less help than is available, is about solving real problems, satisfying your ego, or settling old scores.

I can tell you what various entitlement programs pay for, and what they don't; which situations are covered by long-term care insurance, and which aren't; and why workplace accommodations designed for child care don't help much when you're caring for an elderly parent. I can tell you when it might be wise to avoid specialists, who are trained to cure and consider anything less a failure, and instead search for a primary care doctor with an interest in geriatrics—the biology, physiology, sociology, and psychology of the elderly. Among other things, geriatricians know the difference between quality of life and quantity of life, and can explore with an elderly parent, and with you, where to draw that line.

I can tell you to stay out of emergency rooms and hospitals to the extent possible and never to leave your parents there to fend for themselves. I can tell you that taking an elderly person for a single test—say, an MRI—is generally an all-day aff air, so it's a bad idea to tell your boss you'll be back after lunch. I can tell you to leave a spare pair of glasses in the car; to keep the gas tank full and the driveway shoveled; to always carry your cell phone charger; and to maintain an updated list of your parents' medications. All of this will prepare you best for dealing with inevitable emergencies.

I can tell you not to be impressed by grand marble staircases in assisted living communities, which are too slippery and steep for the elderly ever to use; these decorative flourishes are there to reassure you that you've moved Mom or Dad to a nice place and needn't feel bad about it. Better you should ask if there's anyone with medical training around aft er six at night. And I can tell you that the rude sounds and smells of a nursing home, which assault you the first time you cross the threshold, will likely become less depressing over time, and that they count for less than the number of registered nurses or the turnover among aides; more important, they will be less disturbing to your parents than to you because old people are at a different, more accepting place, or will be soon.

I can tell you all of these things and more. But the most important thing I can tell you is that being clueless—utterly clueless—is the central and unavoidable part of this experience, perhaps the greatest challenge to those of us who pride ourselves on knowing what we're doing, who like being in control. Th at's because every decision—medical, residential, financial, personal—is contingent on the particular trajectory of your parent's decline. I can't tell you how your mother or father will die, how long it will take, how much suff ering it will involve, what it will cost, how you will pay for it, what will happen to your career or your marriage in the meantime, or whether the experience will bring your family together or pull it apart. All of that depends on imponderables, things you can't know or prepare for no matter how smart you are, how organized, or how loving and attentive.

So even more important than seeking and dutifully following prescriptive advice, in my experience, is learning to roll with the punches, to play without a net. To some, improvisation comes naturally. To me, it didn't. I hated it when my elaborate plans went awry. And I beat myself up over "bad" decisions when there really was no such thing, given the situation. Forgive the New Age–speak, but this is all about the journey, not the destination, because we all know the final outcome.

My brother, who flies by the seat of his pants better than anyone I know, found my obsessive strategizing exasperating and a waste of energy, my own and his, when I tried to force his participation. I found what I considered his la-di-da approach infuriating and irresponsible. With the benefit of hindsight, we've come full circle. He says he's grateful for the plans I made that actually worked, and I'm grateful for his nimbleness when they didn't. So consider, if you must, possible if/then scenarios. But try to avoid woulda-coulda-shouldas, except as a guide for the next crisis or as hardwon wisdom to pass along—gently, very gently—to friends.



Sure. Possible? Of course. Typical? Hardly.

No wonder we're so ill prepared.

When my mother, Estelle Gross, became my brother's and my responsibility, we knew nothing about entitlement programs. (What do you mean Medicare doesn't cover the cost of home care or assisted living or a nursing home?) We knew nothing about the advantages and disadvantages of hiring aides through agencies or word of mouth. (What do you mean the agency aide needs permission from a supervisor before picking up my mother from the floor if she falls?)


We knew nothing about Medicaid spend-downs, in-hospital versus outof- hospital "do not resuscitate" orders, Hoyer lift s, motorized wheelchairs, or assistive devices for people who can neither speak nor type. We knew nothing about "pre-need consultants," who handle advance payment for the funerals of people who aren't dead yet, or "feeders," whose job it is to spoon pureed food into the mouths of men and women who can no longer hold a utensil.


My aim here is to give more precise and vivid meaning to the platitude that old age isn't for sissies. I want to try to make sure that adult children, our ranks growing, are not as isolated and ignorant as my brother and I were, lurching from crisis to crisis without enough reflection, information, or support. Maybe I can help other sons and daughters empathize with the growing mountain of loss in their parents' lives, make peace with an unwelcome role reversal, and adjust to the changed architecture of their families. Maybe I can set an example for how to finish unfinished business with parents, find a more peaceful place in relationships with siblings, and lay a foundation for a mature relationship with brothers and sisters once all the "grown-ups" are gone.

Even before I understood how desperate people were for this kind of information, my editors at the Times—many of them entering the time of life when responsibility for their own parents was a daily concern—embraced the line of reporting I'd initiated. The demographics trumped the old notion that nobody would want to read such depressing fare over breakfast. Most of my stories wound up on the front page, the precious real estate usually reserved for war, politics, and natural disasters. The reader response was overwhelming, and the stories invariably rode the top of the "most e-mailed" list.



I am not an only child or a member of a large extended family, so I've called on the experience of others who have walked that path, amateurs and professionals alike. I am childless, as is my brother, so I've turned to those who are themselves parents for stories of the daily choices they made between cheering at a child's Little League game and bringing dinner to an ailing parent. I've compared my own good fortune to the experience of adult children who, unlike my brother and me, have no savings to dip into.

I've distilled advice I've heard and read on taking away a parent's car keys or on begging them to leave a beloved home. I've done the same for guidance on caring for two failing parents in tandem or one right after the other, or moving a frail parent into your home or relocating to theirs. I'll discuss, in a very limited way, the special rigors of Alz heimer's disease and the unenviable task of taking care of someone who no longer knows who you are. And I'll review disputed end-of-life decisions—say, when one sibling wants a feeding tube and the other doesn't—as well as squabbles over inheritances.

My family's story began at a moment of crisis, when my mother's routine medical problems ceased to be routine, her relatively independent life was threatened, and all three of us were reeling at the time when a clear head mattered the most. This is the way it often happens, a before-and-after event, the day when everything changes.




Was this the "after" moment?

Now, nearly a decade later, I see all the mistakes we made. I had never even met her Florida doctor or talked to him on the phone until this diagnosis. What had prompted him to give my mother an MRI? Had she complained to him of some new symptom she had kept from us? I would have known all this if I'd bothered to develop a relationship with the doctor, joined my mother at appointments when I was there, and talked to him on the phone when I wasn't. My mother wouldn't have welcomed my intrusion, but I should have been pushier. I should have paid more attention. But I liked our family's rules of (dis)engagement because they made my life easier.

Thus the diagnosis left me totally unprepared. My heart raced. My stomach was an elevator falling down the shaft . My head was noisy with static. I made fast decisions rather than good decisions, partly because the sooner we could take care of everything, the sooner we'd be done and back to normal. Th is was just another to-do list, and I'd work my way from top to bottom, as would my brother.



It takes a while to learn that some decisions are far more important than others; some things are actually in your hands and some not. What is vital, and well within your control, is being present in a consoling way and respectful enough to bear witness to the inevitable. This, too, is about slowing down. At fi rst it's hard to walk at a snail's pace beside your mother or father when they can no longer keep up, at least without impatiently rolling your eyes. Or to kneel at their level if they're in a wheelchair. But the pace and the vantage become more natural and annoyance soft ens into tenderness, if you let it.

I keep saying that this experience can become something other than desperate and bleak, if you let it. It really is a choice. We all know grown children who have bolted when the moment arrived. You aren't one of those, or you wouldn't be reading this book. But imagining running away doesn't make you a bad person. I fantasized, usually in the hypnagogic space between sleeping and waking, facing another day of ignorance and exhaustion, about pointing the car west and driving, driving, driving. I'm glad that I didn't, because instead I learned what I was made of; I found my better self. I found my mother. I found my brother. But all of that came later.

Excerpted from A Bittersweet Season by Jane Gross. Copyright 2011 by Jane Gross. Excerpted by permission of Knopf.

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