Lillian Rubin

The dilemma of taking care of elderly parents

Aging boomers are agonizing over how to help Mom and Dad. I should know -- my daughter is one of them

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The dilemma of taking care of elderly parents (Credit: Kuzma via Shutterstock)

It has become the baby boom generation’s latest and, in some ways, most agonizing life crisis: what to do when the parents who once took care of you can no longer take care of themselves. Raise your hand if you’re one of the 60-year-olds reading this who has one or more living 80-year-old parents.

Listen in on a group of middle-aged children of the elderly, and you’ll hear that even the most casual mention of aging parents is likely to open up a Pandora’s box of anxieties. These are stories told with tears, with exasperation, and sometimes, when they can take a step back, with laughter. Not funny ha-ha mirth, but more like the hysterical laughter we all experience at those moments when we’re forced to come to grips with the absurdity of life and our own helplessness.

Even if their parents are still doing fine, middle-aged children need only look around at friends and neighbors to be reminded that these anxieties will become theirs one day. Indeed, most of the children I spoke with in the research for my book, “60 On Up: The Truth About Aging in America,” actively worry about their aging parents, often well before their parents need any help.

I see it with my own 63-year-old daughter, who wants me — her 87-year-old mother — to be in touch when I leave town, even if only for a few days or a week, who calls when she’s traveling though she never did before, whose anxiety announces itself over the phone lines when we haven’t talked for a while: “Are you OK?” I tell her I’m fine, ask her to stop worrying. “It’s my turn to worry,” she replies.

She and her husband have regularly spent some weeks each year in adventurous travel abroad. Now, she’s reluctant to go away for so long and resists going anyplace where she’ll be out of reach for more than a day or two. When I tell her that her anxieties are overblown, that her fears are unfounded, that I want her to go and enjoy herself, she looks at me and says, “It has nothing to do with what you want. It’s what I need.”

It’s a response that moves me to tears, while a little corner of my brain thinks, “Yes, I know, but that’s your problem. It has nothing to do with what I need right now.”

When she read these words in an earlier draft of this article, she called. “I think you left something out here, Mom.” I’m quiet, puzzled, waiting for the rest, until she goes on to remind me that when she phoned to say they were back after their last overseas trip, my immediate response was one of great relief — “as if,” she says, “you were holding your breath the whole time we were gone. You actually told me that you were relieved and that you didn’t really like it anymore when I’m so far away for so long.”

I resist at first, wanting to tell her she’s making more of it than I meant. Then I remember the rush of unshed tears when I heard her cheery, “We’re home!” at the other end of the phone line, remember, too, how comforted I felt to know she was nearby again, relieved of an anxiety I hadn’t even fully known was there.

“But I also meant it when I said I don’t want my feelings about this to determine how you live your life,” I say.

“I know,” she says, “but that’s only because you think you always have to be the mom. I love you for it, but it can be a pain when I feel like I’m getting mixed signals and when you try to protect me when I don’t need your protection.”

Another reader — the adult child of another mother — to whom I sent an earlier version of this article, sends an email pointing to this passage and says, “It would be nice if you’d expand on what you do need. Parents tend not to say what they need, and we children are left to try to figure it out, which leads to problems when we make mistakes.”

These issues between parents and children, the mixed messages on both sides — children who say they want to help but who already have too many demands on their time and energy, parents who say they don’t need anything but clearly do — are an old story. It’s not news either that adult children have always worried about their parents, that they’ve always cared for them in their old age, and that the role reversal is inevitably a wrenching emotional experience for all concerned.

But the demographic and cultural context in which this takes place is vastly different now than it was a century ago. Then, few women worked outside the home, so someone was available to care for an ailing parent. Today, a changed culture combined with economic need has put most women in the labor force alongside their men, which means that there’s no one at home to take care of Mom or Dad when they need it. Then, life expectancy at birth was just over 48 years; today, it’s close to 80. Then, so few lived to 65 that there is no record of life expectancy at that age. Today, if we make it to 65, we can expect to live another 20 years. And one-third of those over 65 need some help in managing their daily lives; by the time they reach 85 (the fastest-growing segment of our population today), that number jumps to well over one-half.

The result: Middle-aged adults may well spend more years caring for a parent than they did for their children.

Those in their 60s and 70s, who looked forward to these years with their promise of freedom from the responsibilities that bound them before, are now asking: “When do I get to live my life for myself?” The younger ones, who at middle age are already stretched thin by their own financial problems — worried about how they’ll provide for their children’s education, whether they’ll ever have enough for their own retirement, how they’ll live the rest of their lives — are asking: “How can I do it all?”

No one wants to ignore parental needs, but unless there are financial resources well beyond what most families can dream about, how to meet those needs is a problem with no easy solution. For the children, it can mean bringing their parents into their homes and, among other things, dealing with a spouse’s grumblings about the intrusion in their lives, teenagers’ complaints about giving up the privacy of their rooms and coming home to Grandma or Grandpa after school – a tempest that sometimes strains marriages to the breaking point.

If there’s one word to describe the dominant feeling on both sides of the bridge that connects the generations at this stage of life, it’s “ambivalence.” “I love my parents, but…” That’s a line I hear spoken repeatedly as women and men struggle with the duality of their feelings — their love for their parents; their sense of obligation; their guilt that, no matter how much they do, it never seems to be enough; their difficulty in coping with their own needs, with their jobs, their families, their fears about their future and, not least, the inability to see an end in sight. The parents’ stories are the mirror image of their children’s. “I love my children, I know they want to help, but…” The words say they appreciate their children’s concern while they feel it as an infringement on their autonomy.

Children grumble about how hard it is to reason with their parents, about how they resist any change even when it seems clearly necessary. Parents complain about unwelcome intrusions, about being talked to as if they were incompetent children. “It’s what happens when you’re old. You lose all credibility, and people treat you as if you’re half brain-dead,” observes an 86-year-old father heatedly. “It’s damn insulting, and I don’t like it any better when my children do it. Worst part of it is, they don’t get it. They just write you off as being difficult.”

His 79-year-old wife agrees but speaks with more understanding of the difficult situation in which they all find themselves, welcoming her daughter’s caring while also resenting her interference. “I know she doesn’t agree with our decision to stay in our house, but that’s only because she wants us someplace she thinks is safe, so she doesn’t have to worry.” She hesitates a moment as if considering whether to go on or not, then adds, “I don’t know exactly how to say this, but sometimes I think the kids are selfish, too. I mean, I know they love us and want the best for us, but is it an accident that what they think is best is what will relieve them, whether it’s really good for us or not?”

An accusation that’s not without some merit, but one also that doesn’t take account of the complex and conflicting feelings both generations juggle. Looked at from the parents’ side, there may, in fact, be something self-serving in the way children push parents to give up their home, their cars, their lives, so that they can stop worrying about them. Some even acknowledge it. But step into the children’s shoes, and you wonder: Who’s selfish? Is it selfish of parents to insist on maintaining their lives and the home of a past they can no longer live easily without considering the price children pay?

True, parents didn’t count the cost, whether financial or emotional, when they gave themselves over to caring for their children. But parents chose that life. It wasn’t forced on them by circumstances outside their control, and the legitimacy of their authority to do so was unquestioned. But taking care of Mom and Dad profoundly interrupts the lives of adult children who have no authority to control or manage the situation unless their parents willingly hand it over. “I feel like I’m being torn to pieces,” cries a 48-year-old woman as she struggles to balance her care and concern for her 70-something parents who need help and don’t have the financial resources to pay for it.

Her parents’ response: “We just want her to stop nagging us and let us live our lives the way we want to.” I remind them that their daughter says they can’t afford to continue to live their lives as they have.

“That’s our problem,” her mother replies, hotly. “We’ve managed until now. We’ll manage again.”

It’s a no-win situation. Parents commonly resist their children’s attempts to intervene, but they are often in denial about the depth of their decline and can’t or won’t see what’s plain to others: They need help. If children back off from the conflict, their parents can fall through the cracks. If they don’t, parents are often resentful and difficult. “They think because their father died, I need them to tell me how to run my life — where to live, how to spend my money. It’s ridiculous. I love them and I don’t want to get upset and argue with them, so I finally just stopped listening when they talk. Sometimes when I know it’s one of them calling, I don’t answer the phone.”

It’s an upside-down version of the familiar passive-aggressive drama between parent and adolescent child: “Where are you going?” “Out.” “Who are you going with?” “Nobody.” “What are you going to do?” “Nothing.” Just as parents must decide when to intervene and demand answers, so adult children sometimes have no choice but to take control.

“My mother is furious with me because I insisted on moving her into an assisted-living place,” says a 70-year-old man mournfully. Then, his sadness turning to anger, “For God’s sake, she’s 89 years old and has arthritis so bad she can hardly move. I don’t think she’ll ever forgive me, but when I found her on the floor because she fell and couldn’t get up, there was nothing else to do.”

There is no right and wrong here, no black and white; there are only shades of gray in situations so murky that it’s nearly impossible for either parents or children to know just when it’s the right time to take a step, make a move. Children, who think they see the line more clearly, push their parents to a decision, mostly out of loving concern but also because they need some relief from the worry and the burden. Parents fight more tenaciously to hold on to what’s left, as each step of their decline poses another threat to their sense of self. They tell themselves they’ll know when the time has come; then one day they slip, fall and can’t get up. Or at some unseen, unfelt moment, they slide past the time when they were mentally capable of making a reasoned choice. For a disease of the mind doesn’t arrive with the drama of a broken hip; it travels stealthily, taking little bits and pieces as it moves through the brain, each one seeming inconsequential in itself until one day the person has slipped over the edge.

What to do? I have no easy answers. What I do know is that one of the great challenges facing both the nation and its families is how to take care of our parents and grandparents — a problem that is increasing exponentially as 78 million baby boomers have begun to move into the ranks of the elderly. In an article last month in the New York Times about the failures of Medicare — what it does that it shouldn’t do, what it doesn’t do that it should — Jane Gross tallies some of the social cost: “Right now, there are 47 million Medicare beneficiaries, costing a half trillion dollars a year, or one-fifth of the nation’s health spending. In 2050, the population on Medicare will number 89 million. How scary is that?”

Scary enough to push us to lift our voices for some radical change in the way healthcare is delivered in our nation. I know, I know. We’re living in a moment when the rise of the political right, and the consequent gridlock in Washington, has even made it socially and politically acceptable to propose the abolition of Medicare and Social Security as we’ve known them. But that doesn’t mean we must suffer in silence. Rather, we — both parents and children — have to make ourselves heard on behalf of the kinds of changes that will lift some of the strain from the backs of both generations. At minimum, a change in Medicare policy that would allow for long-term care, whether outside or inside the home, without requiring that the recipient be impoverished — a policy shift that would ease the financial anxieties of both generations and surely assuage some of their psychological anxieties as well. At best, a national universal healthcare system that, like those in every other Western democracy, would ensure healthcare for all Americans and wouldn’t break the bank, as our present for-profit system threatens to do.

Meanwhile, take a deep breath and come to terms with the reality that our new longevity is both a blessing and a curse — a blessing because we live longer, healthier lives than we ever dreamed possible, a curse because old age sucks. It always has, and it always will, because it is, by definition, a period of decline that takes a toll on those who are old and those who love them. The only difference now is that, because we live so long, our children suffer it right alongside us.

“This was supposed to be my time,” says a 75-year-old retired widower whose 94-year-old mother has been living with him for 13 years. “It’s hard not to think, What about me? I’ve had some heart problems, and I think about that and know that, well, you know, I could die anytime and I’ll never have had the chance to live these years like I wanted to.”

The day I became a widow

After my husband died, I couldn't shake my guilt -- or a feeling that I'd lost a crucial part of myself

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The day I became a widowThe author and her late husband.

Yesterday I was a wife; today I’m a widow. A 4 a.m. phone call, a voice penetrating the fog of sleep, and just like that, I’m a widow.

I sit on the edge of the bed, shivering; the window is open and the night chill has invaded the bedroom. I pull the comforter around me as I try to make sense of what I just heard. “Are you there, ma’am?” the voice asks. “Yes,” I reply. But I am, and I’m not. Instead, I retreat to another place, a familiar one — my therapist mode where I’ve spent decades as the one who listens, interprets, analyzes, comforts, cajoles — and I ask myself: Is it really so cold in this room, or is this what shock feels like? I’ve read about it, heard patients and friends describe it, offered words I thought were wise, comforting, helpful. But until the moment I sat in that dark room, teeth chattering uncontrollably, unable to bring mind and tongue together to speak coherently, I had no idea what shock really feels like.

The voice on the phone intrudes, pulling me back to his message: Hank, my husband, is dead. I saw him just a few hours ago: living, breathing, holding my hand, kissing it as if trying to take me into himself. Did he know he was dying? Was he saying goodbye? “Ma’am, I need to know you understand what I said.” But all I can think is, It’s too early to call Marci to tell her that her father is dead. He’s patient, my caller, he waits awhile, then asks, “Ma’am, Dr. Rubin, what do you want us to do? We have his instructions, we can call the mortuary and have them pick up the body.”

The sound of my name jolts me back to attention for a moment. Years ago we made arrangements for cremation but now, faced with the idea, I balk. “No,” I shout into the phone, “don’t do anything until I get there.” I can’t just let him go like that; I have to see him, feel him, hold him one more time. I have to say goodbye and I’m sorry.

Sorry for what? I didn’t know then, maybe still don’t fully know. But in that moment I was overwhelmed with what Joan Didion calls “magical thinking,” and what I might call “survivor guilt” — the “what ifs” and “if onlys” that come to us when we survive and others don’t, the belief that we could have/should have done something to prevent the catastrophe.

I’ve read about survivor guilt, treated patients suffering it, and know that the symptoms match the feelings that course through me now. But the heart doesn’t always grant what the mind knows. So the guilt I feel seems to be mine alone, built on the knowledge that I would sometimes get irrationally angry at him, at life, when the burden of caring for him seemed heavier than I could bear, on the vigilance with which I watched over his care after he no longer lived at home that suggests I was motivated as much by my need to appear the good and loving wife as by my love for him, and maybe worst of all, that I sent him away to be cared for by others when I know, with absolute conviction, that he would never have done that to me.

Could I have prevented the fall that broke a couple of his ribs and ultimately caused his death if I had kept him home? My mind says magical thinking. It’s precisely that scenario — the one where my 6 foot, 190 pound husband fell in the night, and his 5-foot-4, 120-pound wife couldn’t lift him without help — that pushed me into the decision to put him into care. Still, despite some time spent analyzing my feelings with a wise and thoughtful therapist, my heart can’t resolve the conflict and guilt. Nor can I, even now, let go of the question: Would his ashes be lying in a peaceful arbor in the University of California at Berkeley Botanical Gardens if I had kept him home?

It was only a few short months ago that I wrote about the problems of living alongside dementia on Salon.com. I recounted there a meeting with a man who wept as he talked about his wife’s recent death and his awkward attempts at coping with his new life as a widower and single man. “I left our conversation,” I wrote, “feeling sad for him – and also envious. At least, I thought, he knows what’s ahead; he knows the meaning of the word ‘widower.’ But I’m a widow with a husband who’s alive; I’m a single woman with the responsibilities of a wife; I have a future, but I have no idea what it will be or how to get there.”

What is it they say: Be careful what you wish for?

Hank died eight days before our 49th anniversary wedding anniversary. It’s hard enough to comprehend any death, to grasp the reality that we can go from life to death in the space of a breath. But when it’s a mate who dies, a partner with whom you’ve shared so many years, it shatters a whole life. One 4 a.m. phone call and it’s all over — my marriage, my role in it, a whole world of social and personal life transformed. How do I wrap my mind around it?

True, we hadn’t lived together for nearly a year, and I was already living a life quite different from the one we had before dementia intruded. But I could still say “my husband” and could still be his “wife.” I had a role to play, and while the responsibilities that went with it may have felt heavy then, they also framed my daily life — sometimes foreground, sometimes background, but always there. That’s gone now, wiped out in that instant when death claimed him and I became a widow.

I say the word, roll it around on my tongue, but I don’t know what to make of it, how to live it. What does one do as a widow? What are the rules and norms that govern a widow’s behavior? As I live these months and notice the sensitivity with which friends treat me — the permission they give to my self-involvement, to go over it again and again, to cancel a dinner date with no excuse, no white lie, only the words, “Sorry, I can’t” — I sometimes think that the only legitimate social role left for me is that of grieving widow.

I tell myself it’s just a word, but it’s not that simple. A word is more than “just a word.” It embodies ideas that frame our thoughts, tells us what to expect, even sometimes who we are. Hear the word “wife,” and we think of life, husband, family, connection. Just so, “widow” tells its own story, this one a tale of death, aloneness, loss. Not just the loss of a loved other, but of a role we inhabited, a valued part of ourselves and our place in the social world. Wife has expectations, social and personal, present and future. Widow is now, the future unreal, undefined, with no rules, no guides for how to live it.

I sit at my desk filling out one of the many forms that accompany life or death in the modern age, and there’s not even a box to check in the “Marital Status” section. Married or single? they ask. I’m not married, single doesn’t feel right, but there’s no other option. Not that I’m eager to take on the definition of widow. Quite the opposite! I want to stamp my foot like a 2-year-old in a temper tantrum; I want to shout to the world, “I don’t want to be a widow, some poor status-less creature who has no role to inhabit except as the bereaved. I want my life back!”

A friend asks me, “Do you really wish Hank, as he was in the last years, were still here?” The question brings back to me a line in a song I heard recently, a lament about life and change, about holding on and letting go, “It’s everything you wanted; it’s everything you don’t” — words that speak to the complications of heart and mind. So one part of me answers, “No, I don’t.” I don’t want to live with the daily drama of dementia again; I don’t want to watch the man I loved for half a century slip away piece-by-piece until there’s almost nothing left him, only the body with a mind that’s forgotten who he is.

But the mind is a wily creature, and both death and dementia are tailor-made for denial. True, the process is different and more prominent in one than in the other. Dementia tiptoes in, takes its time to make itself fully at home, moves in and out erratically for years, and leaves confusion in its wake. It’s the perfect script for a cycle of despair and denial, with brief moments of acceptance along the way. On the bad days, despair reigns; on the good ones, denial takes over, and you turn away the memory of yesterday’s confusion and disorientation and hang on to today’s moment of coherence.

Death, although unequivocal in its finality, brings its own confusion, and the mind doesn’t accept the reality easily. You wake in the middle of the night, reach out to the other side of the bed, and no one is there; you read the newspaper at the breakfast table, begin to share something, and there’s no one tell it to; you go to the market, buy food for two, and there’s no one to eat it all. As these moments pile up, denial fades, to be replaced by myth-making and idealization of the dead and the shared past. There’s nothing and no one to contradict the new construction — no new experience, no person to push you to know what you know but want to forget, no one to say, “Yes, but …” And even when someone — a child, an old friend who was there through the years — reminds you that it wasn’t all as rosy as the story you tell yourself now, it’s no trick at all to shut out their meaning.

It isn’t that I’ve totally left reality behind. I can tell myself the stories; I just can’t feel them. My head knows that these memories of the before-dementia years are idealized in some ways, that there’s a screen or a veil over the difficult and complicated issues that are part of any half-century of living. But my heart cries out, So what? Why do you always have to know? I like these memories just as they are. Leave it alone?

Nothing wrong with that; there’s no right way to live with the aftermath of death. But I know that until I can claim the whole of our life together — before and after, good and bad, joys and tears — I’ll be stuck in the constructed myth of the idyllic before-dementia years and unable to step into whatever the future holds.

We live in a time when it’s trendy to be searching for the self, for some core being that reflects the real self, the one that’s not filtered through the set of roles, norms and expectations that any society imposes. “Maybe it’s time to just be,” a friend counsels. “Maybe this is your time to let go, give up all the rest, and just be authentically you.” But it’s a false god we seek, for there is no self outside of society.

What does it mean to just be? I try to make sense of the words, but it’s as if we’re speaking from two different worlds. How can I just be something when I can’t understand what that means? Who am I without the various roles I’ve lived all these years: wife, mother, friend, psychologist, sociologist, writer — each new one opening up a part of the self, each sometimes enhancing, sometimes limiting other parts. Sure, depending on the demands of the moment, one is foreground, the others background. But no matter what their position, they are all crucial parts of the self that has defined me, not just to the world but to myself as well. What do I do now with the me that was Hank’s wife for the last 49 years of my life? Was that not an authentic part of me? Was I just playing a role?

In his famous book, “The Presentation of Self in Everyday Life,” the sociologist Erving Goffman uses the metaphor of the theater to limn what he calls the “front stage” and “backstage” arenas of the roles we play in our own lives. It’s a great metaphor, and we know intuitively that it’s true — that there are front stage (think: job, cocktail party, grocery store) and backstage (think: home, family, friends, alone-time) parts of our lives. We know that we show a different face at a parent-teacher conference than we do at home later that day when we’re tired and irritable and the kids won’t go to bed. We know, too, that a different part of our self comes to the fore when we’re sharing a glass of wine with a close friend than with a colleague who may sit in judgment at our next promotion review.

But it’s only a metaphor, not the story. For life is more than theater, our roles more than performances. They are also deeply rooted parts of ourselves that can be very difficult to sever, even when we choose to do so. We may, for example, think about retirement for years, construct fantasies of “the good life” when we don’t have to go to work every day. But it’s a different story when we face the reality of losing the role that identified us to ourselves and in the world for so long. In the research for a book I published a few years ago, “Sixty On Up: The Truth About Aging in the 21st Century,” I spoke with dozens of retired men and women who were struggling to adapt to the new role and the definition of self that flows from that. As one man said to me then, “I thought if I could play golf three-four times a week, I would feel as if I’d died and gone to heaven. But turns out I miss the job, the guys I worked with — the whole thing, like who I was then. I mean, I love golf, but c’mon, there’s got to be more to life than that.”

And this was a role change they sought and that also does have some rewards.  Think about how much harder it is when death chooses for you, when you’re torn from a cherished role to one without reward — from wife to widow — in the blink of an eye.

But what have I done here? Have I retreated to the intellect, the mind, because I can’t tolerate the emptiness of the heart? Perhaps. But in putting these thoughts on paper, maybe I’m also closer to bringing together mind and heart, past and present — and with it the way to the unknown future that lies before me.

Is there a lesson for others here? I don’t know. For while becoming a widow — the shock, the disorientation, the shaken sense of self, the unknown future — is much the same for a 50-year-old as it is for someone like me who has ascended to the ranks of what the gerontologists call “the old-old,” being a widow at midlife is very different from the experience in old age. Not easier, just different — different problems in the present, different possibilities for a future.

What I do know is that there are times in a life when, no matter how many loved ones surround us, we must walk alone. Becoming a widow is one of those times. And the path to being a widow, the ability to find a future and live it well, lies inside me. It’s true, as I’ve said, that widow is more than just a word. But it’s equally true that it is also just a word. It has no magic qualities to force itself upon me; I have choices to make. A door closed on a part of my life, and if there’s another waiting to open, my mind and heart both tell me that I’ll only find my way to it by mobilizing the parts that are left. 

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