For the last five years, Joyce Antler, a Brandeis University historian in her early 50s, has been living what she calls “a terrible nightmare.”
Antler lives in Brookline and is trying to manage the care of her increasingly demented, 84-year-old mother – long distance.
At first, the solution seemed to be to have her mother move up from Florida to live with Antler and her family, but within a month, she says, her mother “found it impossible because we were so busy. She felt like a fifth wheel.”
So Antler’s sister gave up her apartment in New York to move back to Florida with their mother. But this has proved only marginally better, Antler says, because her sister has serious medical problems of her own.
The result is ever more frequent – not to mention expensive – plane trips to Florida, endless telephone calls to help her sister manage crises and “semi-crises” and a lot of guilt.
Antler’s dilemma is the tip of a huge iceberg that, some worry, could come close to sinking the Great Ship Baby Boomer.
In fact, if you’re among America’s 76 million boomers – born between 1946 and 1964 – and you thought finding child care was a colossal hassle, you are about to get smacked between the eyes with an even bigger problem, if you haven’t been already.
Call it the geographic crunch. Suitcase caregiving. Long-distance care management. By whatever name, managing the care of a frail or disabled parent, especially from far away, is, as Antler says, a true nightmare, and one that will almost certainly get worse as boomers and their parents age.
Many older people, of course, are willing to make a final move to assisted living or a nursing home when it looks as though they will no longer be able to manage things at home.
But most want to live out their lives in their own homes, with the right kind of help – nursing services, home health aides and someone to help with errands, housekeeping and yard work.
The trouble with that, however, is that while services are available, especially for those who can pay for them, finding them usually means cutting through miles of red tape.
That is tough enough to do if your parents live next door, and it can be “truly overwhelming” if they don’t, says Scott Bass, dean of the graduate school at the University of Maryland/Baltimore County.
Although most people over 65 live within an hour’s drive of at least one child, an estimated 7 to 9 million aging parents do not, says gerontologist Merril Silverstein of the University of Southern California.
And that gap could get worse.
Currently, 2 million working Americans – most of them women – help older relatives with activities of daily life. But the “greater geographic dispersion of families, smaller family sizes and the large percentage of women who work outside the home are straining the capacity of this care source,” the government’s General Accounting Office noted in 1994.
While hands-on care – bathing, shopping, giving medications – is the most demanding help that children can provide to aging parents, the managerial stuff – the hours on the phone arranging or monitoring help given by others – is no small task.
In fact, lining up care for aging parents is “much more complicated than setting up child care for kids,” says Dorothy Howe, acting manager of health advocacy services for the American Association of Retired Persons in Washington.
For one thing, “you’re not dealing with a dependent,” says gerontologist Bass. “You don’t have the authority, necessarily, to intervene.” Added to that is an often complex family history, sibling disputes over who should help how – and distance.
It adds up to “a very, very stressful, difficult issue,” says Bass, who adds that even “experts in gerontology are absolutely drained by the experience of traveling back and forth” to help manage parents’ care.
“Are you kidding?,” he says. “You call state agencies and you get a recording. Or someone’s not helpful. Or it’s the wrong number. . . . This is probably the hardest thing a family can go through. It defies the complexity of what people experience with children.”
Al Norman, executive director of Mass Home Care, a consumer organization for the elderly, couldn’t agree more: “I found this out personally – and I am in the business.”
When his mother needed help for his father, who had Parkinson’s disease, Norman had “a devil of a time trying to just locate an area agency on aging in Maryland. . . . We never did find the right service for overnight care.”
And John Paul Marosy, a specialist on elder care issues and president of a consulting business, HM Associates in Belmont, tells a similar tale.
“I’ve been in home care for 20 years and nothing in my professional dealings with the elder service system prepared me for the complexity and emotional impact of trying to arrange care for my own father,” says Marosy, who was moving to Massachusetts when his father was diagnosed with cancer in New Jersey.
“I would argue that for baby boomers, the next role for radical activity is making sure the elder service system works for our parents so it will work for us when we get older. This is a real wake-up call.”
And there are signs the system is beginning to wake up.
Business is booming, for instance, at Work Family Directions, Inc. in Boston, the biggest player in the “work-life industry,” which helps employees balance work and family needs.
Work Family serves 2.5 million employees nationwide from companies like Digital, Gillette and Bank of Boston, says regional manager Diane Piktialis, 30 to 40 percent of whom need help with long distance caregiving of parents. Other groups like Elderlink in Somerville and WarmLines in Newton do likewise for employees of organizations like Wellesley and Babson College.
Diana Harrington, for instance, a Babson College professor of finance who is in her fifties, turned to WarmLines to find services for her mother in Virginia and her mother and father-in-law in West Palm Beach, Fla.
Trying to set up care from afar is “horrible, terrible,” she says. “You don’t have a clue where to start. I don’t even have a West Palm Beach phone book.” But WarmLines, which works with West Suburban Elder Services, helped, she says.
Even when a parent is able to find services on her own, it may still be worthwhile to do your own research to offer additional options, says Barbara Levitov, director of special events at WGBH-TV. At the very least, says Levitov, who sought help from Elderlink, having your own suggestions can help you “start having a real conversation” with your parent.
If you don’t work for a company that provides these kinds of services, you can plunge in yourself by calling local or state agencies on aging where your parent lives.
If you’re getting nowhere and can afford it, you can hire a geriatric care manager who should come up with options much faster than you can. So far, there is no national certification for professional care managers, though most are social workers or nurses. It costs $ 200 to $ 350 for an assessment of your parent’s needs, plus $ 40 to $ 150 an hour thereafter.
Whatever you do, be gentle as you plunge into this new role with your parents – with them and yourself – say those who’ve been there. Managing a parent’s housing, medical care and finances can be a burden, especially from afar, but it is also a chance to give back or smooth over decades of troubled history.
Marosy of Belmont found it “a tremendous opportunity for closure for me in my relationship with my father, which was a very hurtful one. I grew in ways I never would have expected.”
And be persuasive, not coercive, even if your parent’s pace toward solving a seemingly messy situation is slower than yours.
In extreme cases, you can get legal guardianship of a parent – if, say, you need to sell property to pay for services. But “legal intervention may not get you what you want – what you probably need is some negotiating skills,” says Nancy Coleman, director of the American Bar Association’s commission on legal problems of the elderly.
And when the going gets tough – as it will – remember what Marosy learned, as a professional and as a son. “Think about this caregiving as an opportunity. It’s almost a dress rehearsal for your own aging.
“In terms of psychological and emotional development, this is the entree to the second half of life. We can either ignore it or embrace it.”
1. Helpful tips to remember
Specialists in aging offer the following tips for people trying to manage the care of aging parents long distance: