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

Published November 26, 2011 8:00PM (EST)

    (<a href=''>Kuzma</a> via <a href=''>Shutterstock</a>)
(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.”

By Lillian Rubin

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