More Than Caregiving

The new truth about life with aging parents.

Am I Doing Enough?

People do their best, hoping it’s good enough, fearing it isn’t.

We live in an age of Twitter, of 140 characters, of quick comebacks and pithy replies. Of looking like we know what we are doing, where we are going, where we ought to be by now. Online, we see what everyone else is doing. Comparisons follow. And so does the craving for something unbiased, thoughtful, reliable.

Regarding the topic of caring for aging parents, I consistently find this kind of "comfort" and community at the New Old Age blog at The New York Times.

When it comes to caring for a loved one, there is no one way to any one thing. However, there does seem to be a universal issue that lingers. That theme circles back to feeling in--and out--of control.

"This question of what grown children feel obliged to do, what they actually can manage to do, what parents who want their independence will allow them to do - it bedevils just about everyone." This is what author and columnist for The New York Times New Old Age blog said when I asked her about trending issues for those who care for aging parents or other older adults. 

Journalist Paula Span, who is also the author of When the Time Comes, shared her thoughts about eldercare and aging parents, and the worry many have about sustaining levels of care in the long term.

Meredith: Is there a certain trending issue that dominates an adult child's concerns for an aging parent? Does your mailbag (or inbox) give any clues?

PAULA: Certainly everyone is immensely worried about the cost of long-term care, when that becomes necessary. Few families have prepared to confront those frightening numbers. Adult children also work hard at trying to grasp the implications of complicated medical decisions and at helping their parents to figure out the best approach.

But even more universal, I think, is the challenge of trying to balance care and concern for parents with the need to respect their autonomy.  This is uncharted territory: Parents living years longer but often with disabling conditions, daughters and daughters-in-law (the traditional caregivers) in the workforce, adult children who may be at or past retirement age themselves, others who still have younger children at home themselves.  That's why founding blogger Jane Gross called the blog The New Old Age, emphasis on new. (Read "Please Take Perfectionism Out of Caregiving" and my interview with Jane Gross about her bestselling book about caring for her mother, A Bittersweet Season.  

This question of what grown children feel obliged to do, what they actually can manage to do, what parents who want their independence will allow them to do - it bedevils just about everyone.  And the high proportion of dementia in the very old, a direct consequence of those extended lifespans, makes every part of the equation more difficult to solve.

Moreover, families feel very alone with these decisions and negotiations.  They don't know where to turn for help. 

My working hypothesis, as I have written, is that the boomer generation watched too many episodes of "The Waltons."  Now they see it as an impossibly daunting gold standard - the whole family, so loving and interdependent, up there together on the mountaintop - that we berate ourselves when we fall short of that supposed ideal.  And we all fall short.  And it wasn't so ideal.)

Meredith: Most adult children try to help their parents navigate old age, or that they are more interested in controlling what a parent does? I ask this because I think many individuals do not see a difference, just as many parents do not see how they micromanage their children. Can you comment?

PAULA SPAN: I'm sure that in some cases, long-standing family dynamics cause struggles for control.  But more commonly, I think, adult children don't really want to take over their parents' decisions.  They do so reluctantly, and often guiltily, and they tend to wait until events almost force them to act.

Of course, some families work well together with little rancor or self-doubt.  I tend to hear from the other sort, in which parents resist virtually any kind of help or intervention and children don't want to impose their values and siblings tussle over who does what, or doesn't.  But when they think their parents are endangering themselves (by living in clearly unsafe conditions) or others (by driving when they're clearly no longer competent drivers), they take a deep breath and wade in.  

I don't get the sense that it's a role they embrace joyfully.  There aren't a lot of guideposts and there's a lot of head-scratching.  People do the best they can, hoping it's good enough and fearing that it isn't.

Meredith: As a journalist, what policy topic/social issue are you most interested/concerned about in these two ways: as a policy issue in and of itself (for example, healthcare, assisted suicide, baby boomers growing older but not having the money to afford care, etc) as an issue that the public (adult child/aging parents) doesn't seem interested in or fully understand, and therefore will be unprepared for the possible effects on their health/lives/long-term livelihood.

PAULA:  At the New Old Age, we devoted a lot of attention to the CLASS Act, which was tucked into President Obama's health care act and which was a legacy of the late Sen. Ted Kennedy.  It represented a rare attempt to grapple with providing long-term care for an unprecedentedly large number of old people and with financing it.  Then we covered the CLASS Act's demise over many months, too.  

So that approach seems off the table, but of course the need is as urgent as ever.  Very few families can afford to pay out of pocket for years of hands-on care for frail and disabled elders.  States are slashing their budgets for social services and Medicaid.  Private long-term care insurance has never really caught on.  So I'm ready to cover some other rational suggestion, should someone propose one.  So far, I'm still waiting.

On a more personal level, I find the question of end-of-life care compelling -- and it's clear that our readers, both adult children and older people themselves, have strong opinions about it.  I think my own mother had that elusive "good death," at home with hospice care.  Yet it's disturbing how rarely that happens, how often patients and families don't get honest assessments from medical personnel, how many people are still subjected to uncomfortable and futile hospitalizations and interventions, how few die at home as they prefer.  This is an instance where what we have learned just doesn't seem to translate into what actually takes place, where medical guidelines are routinely ignored and families don't get the support and information they need to make responsible and compassionate decisions.  Yet there's also a tide of fascinating research that may, slowly, reshape attitudes and I try to pass it along.

 



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Meredith Resnick, L.C.S.W., is a health writer and licensed social worker. She is also the mother of two adopted daughters.

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