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The New Wisdom on Caregiving and Aging – An Interview With Paula Span

Here at LifeCycles, we’ve been talking to increasing numbers of people in their middle years dealing with the challenges of aging parents. We realize there is a need to offer additional information and support to members of this growing community. Join us as we launch our interview series, The New Wisdom on Caregiving and Aging.

When we decided to gather insights from the pioneers in this growing cultural frontier, the first person who came to mind was veteran journalist, Paula Span. Author of the 2009 book, “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions,” she currently writes about aging and caregiving for the New York Times New Old Age blog. A former Washington Post staff writer, Paula now prepares the next generation of journalists at the Columbia University Graduate School of Journalism, where she has taught since 1999.

We’re pleased to share with you our conversation with writer, Paula Span.

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LifeCycles:  Given the extensive research and variety of topics covered in The New Old Age Blog, I’m interested in your perspective on our culture as a whole. What can we do as American baby boomers to encourage more dialogue around the elderly/aging population in our country?

Paula Span: Today’s situation reminds me of what happened 40-plus years ago, when women were flooding into the workplace and confronted the issue of child care.  It became clear – not that we’ve solved that problem, either – that forcing every individual American household, in every suburban house or city apartment or rural community, to grapple independently with how to combine employment and parenting was unfair and unworkable.

We’re at that point with eldercare, I think.  Our seniors are living longer, which can be a marvelous thing, a happy result of improved medical care.  But most of them – two-thirds – will at some point in their lives need help with the so-called activities of daily living, like bathing and dressing.  Most of them will develop chronic diseases, not the kind that carry you off swiftly but the kind that need managing over years and that can bring disability.  Caring for them is far more complex, expensive and open-ended than eldercare was for our parents and grandparents.

This is a common predicament, a question tens of millions of families are dealing with.  And it requires common solutions.  Simply to begin talking about this, rather than shrugging it off as a purely private family matter, is important.  Families do still care for their elders, as they always have, and most of them want to take on that role. But we shouldn’t ask them to shoulder it alone.

LC: It seems that there are many places around the world that are doing a better job of taking care of their elderly than we are here in the US. What can we learn from these other cultures?

PS: Actually, I think many countries are in the same boat, because a big part of what’s bringing these issues to the foreground is demographic change – aging populations. Lots of countries are trying to figure out how to respond.

Look at China.  There’s a culture that supposedly includes reverence for the aged and has a strong tradition of families caring for their parents.  But China is industrializing, which means workers leaving their home villages and regions and heading for the cities where the jobs are.  It also means more women in the workforce.  So private developers are building nursing homes in major Chinese cities at a rapid clip, Brown University researchers have been reporting.  Sound familiar? It’s happening later there than it happened here, but the switch from an agrarian to an industrial society, the accompanying geographic mobility, the influx of women into the workforce are causing similar dilemmas.

And I don’t decry those changes, by the way.  I want the freedom to be a working woman.  I want to be able to move from my hometown if I decide to.  We’re never going to turn back the clock.  We’re not the Waltons. (Obligatory boomer pop culture reference.)

So we need to figure out how to accommodate the needs of our elders – not just their care if they’re ill or frail, but their need for vital, vibrant lives that last years longer than they used to – and still be able to work and live and raise our own families.

This is a global issue, not just an American one.

LC: You’ve written about a generation gap between how we as adult children see our parents as they decline, and how they perceive themselves. Often, they look at other older people and think, “Compared to them, I’m doing pretty well.”  At the same time we just see our parents as getting older, more feeble and less able to care for themselves. What can we do as a society to mitigate that disconnect or that generation gap?

PS: It was a hypothesis of mine, not something I can really document.  But the single most common and frustrating question that arises in comments on the New Old Age blog, or when I speak to caregiver groups, is this matter of trying to get parents to accept help.  That also means their coming to accept their limitations.  It’s enormously difficult in many families (but, blessedly, not my own).

Adult children complain that their parents won’t stop driving, even if their diminished skills seem to endanger them and others on the road.  That they won’t accept even minimal paid assistance at home, like a housekeeper or an aide to help with bathing and meals.   That they won’t accept help with managing finances.   That they won’t spring for hearing aids.

It’s hard to know how much of this resistance is economic, a case of Depression-era reluctance to spend money for fear of not having enough, and how much is denial of the less pleasant effects of aging or of failing health (which are not synonymous).  In some cases, dementia – recognized or not – is clouding the older people’s judgment.

And in some cases, of course, adult children may actually be misjudging the situation or over-stepping their bounds.  It’s common to hear them refer to “role reversal,” in which the parents become the children and vice versa – but it’s a poor analogy.  Parents are not children, and unless we’re talking about significant dementia they can make their own decisions, even if they’re not the decisions their children wish they would make.

But a study of patients with heart failure, and the way older versus younger people react to their diagnoses, made me think about the ways parents and adult children may simply see the same set of facts through different lenses.   The parents, the study found, weren’t comparing their current conditions to their more-vital pasts. They were looking at other seniors who were in worse shape and saying, “This isn’t so bad.”

I wish I knew how to narrow those differences.  Some families have literally called in a mediator.  Many geriatric care managers are also licensed clinical social workers and can help people get beyond conflict and reach consensus.

LC: There is a very real division of labor in the US when it comes to caring for our aging family. Women are the primary caregivers. This has a profound effect on our progress in the workplace, our advancing careers and our ability to shatter the glass ceiling. What kind of policies should we be encouraging our elected officials to write and enact that will cause a realignment of this imbalance? And if we cannot realign, what can our representatives do to support the female caregiver?

PS: It also has an effect on women’s own economic security when they are elderly themselves.  About two-thirds of caregivers are women.  If they cut back their hours, shift from full-time to part-time work, turn down promotions or leave the workforce altogether to care for their relatives – and research shows that they do, in fact, use all those strategies – then they may have lower pension and Social Security benefits for the rest of their lives.  They may not be able to save enough for their own retirement.

Employers need to recognize that both men and women become caregivers for the elderly, that they need the same kind of flexible hours, job-sharing programs, part-time benefits and family leaves as people with young children.  Both federal and state legislators need to address this.  I’d also love to see workplaces open onsite day programs for older adults, just as a few have child care centers.

Family caregivers actually save government a great deal of money by keeping elderly loved ones at home, which is where they overwhelmingly prefer to be.  Every year that an older person stays at home or in assisted living, delaying entry into an expensive nursing home where Medicaid eventually picks up most of the cost, reduces government expense.  The least the government could do in return is make it simpler to have a job and be a caregiver.

LC: How can we retrain, re-educate our young people and our society to look at growing older with a different vision? How can our education system help us bring a new way to look at growing older and caring for elderly people?

PS: I wish I had a good answer.  One factor that may help reduce the age segregation of our society is that this is where a lot of future jobs are going to be, in health care and services for older adults.  Young people might overcome their ageism more rapidly if they know that’s where the work is.

Another source of change may be simple longevity.  The longer life spans of today’s elders mean that they are more likely to have relationships with their adult grandchildren.  If the grandparent who read you stories when you were five is still around when you turn 25, you may develop a different perspective on aging.

LC: One topic I have not seen as much focus on is the special circumstances that gay/lesbian older Americans contend with when they need help. From your perspective, what is the status of the discussion about the gay community’s elder population and the special needs they might have?

PS: I am hearing and reading more about this, as the activists who were on the front lines of the gay liberation movement, the organizers who mobilized against AIDS, the people who came out 40 years ago are now aging and need help.

LGBT older adults express uneasiness about turning for help to facilities and programs that assume their clients and patients are heterosexual.  They’re worried that they’ll be vulnerable to homophobic staff members. They’re concerned about cultural isolation.  They’re unsure their health needs will be met.  I’ve heard about older people re-closeting themselves, not being open about their orientation in assisted living facilities or nursing homes, out of fear. Plus, they’re less likely to have children to help oversee their care.

One response has been to try to develop senior communities specifically meant for the LGBT community. An affordable housing complex opened in Philadelphia just recently, for instance. The financial crisis shut down funding for new developments for a while, but perhaps as lending loosens and the economy improves, that will change.

But it’s also necessary to educate staffs and administrators in every kind of senior program and facility about the particular needs and values of gay and lesbian patients and clients.  The price of receiving care cannot be hiding who you are.

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You can read Paula’s regular columns at the New York Times New Old Age blog.

Her website is www.paulaspan.com. You can also visit her on Twitter or Facebook.

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