Caregiving from afar is not easy

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.”

SIDEBAR 1

Helpful tips to remember

– Plan ahead. Don’t wait for a crisis — your mother’s broken hip or your father’s empty refrigerator — to get involved. And remember: As hospital stays get shorter, you may have only a few days to line up care before your parent is discharged.

– Get to know your parents’ informal network. Write down the names and phone numbers of their doctors, lawyer, minister, neighbors and friends who might be willing to help in a crunch.

– Ask your parents to spell out for you what kind of health insurance they have, including for long-term care.

– Ask if your parents would put you on their bank accounts and give you durable power of attorney so you can pay bills and contract for services if a crisis occurs.

– Ask your parents what care they want if they become disabled, especially where they want to live. Don’t assume they should move in with you or that nursing homes and assisted living are the only options. Many people can get the care they need at home — once you cut through the red tape.

– Help them write a living will or health care proxy and ask them to tell you about any other important legal matters.

– As you start to help them sort out options, don’t try to settle everything at once. It usually takes many conversations, over many visits and phone calls.

– Know your limits. Be honest about what you can and can’t do and divide tasks as fairly as possible among siblings. At a minimum, keep other close family members informed.

– As long as possible, respect your parents’ autonomy and don’t fall into the role reversal trap.

– If you get stuck trying to sort out options with your parents, bring in an outsider — a minister, doctor or family friend.

– Find out what resources and referrals are offered by your employer or your parents’ church or synagogue.

– Call the capital in the state where your parents live and ask for the state office on aging. You can also call the area agency on aging in the city or town where they live.

– Set up appointments with visiting nurses, nursing home administrators, home health aides, etc. by phone in advance to make the most of your time when you get there.

– If your parent has a specific disease, say Parkinson’s, contact the local support group. Such groups can often make referrals to helpful doctors and other services.

– Keep a logbook or a computer notebook on your parent’s status, including medical information, discussions with visiting nurses or home health aides about care at home.

Specialists in aging offer the following tips for people trying to manage the care of aging parents long distance:

SIDEBAR 2

Where to learn more

– Elder Care Locator, 1-800-677-1116 begin_of_the_skype_highlighting 1-800-677-1116 end_of_the_skype_highlighting.

– ElderLine, 1-800-AGE-INFO begin_of_the_skype_highlighting 1-800-AGE-INFO end_of_the_skype_highlighting (hotline run by Mass. Home Care Corp.)

– Elderlink Inc. 617-629-0700 begin_of_the_skype_highlighting 617-629-0700 end_of_the_skype_highlighting.

– West Suburban Elder Services, 617-926-4100 begin_of_the_skype_highlighting 617-926-4100 end_of_the_skype_highlighting.

– WarmLines Parent Resources, 617-244-INFO (if service is offered by your employer).

– National Association of Geriatric Care Managers, 520-881-8008 begin_of_the_skype_highlighting 520-881-8008 end_of_the_skype_highlighting.

– Geriatric Care Managers of New England, 617-426-3533 begin_of_the_skype_highlighting 617-426-3533 end_of_the_skype_highlighting.

Books and pamphlets that may help:

– Resource Directory for Older People, free book from National Institute on Aging, 1-800-222-2225 begin_of_the_skype_highlighting 1-800-222-2225 end_of_the_skype_highlighting.

– Miles Away and Still Caring, free booklet by AARP (American Association of Retired Persons). Write to AARP Fulfillment, 601 E St., Washington, D.C., 20049. Request booklet by name and stock number D12748. Allow 6 to 8 weeks for delivery.

– “Caring for Your Aging Parents,” by Donna Cohen and Dr. Carl Eisdorfer, published by Tarcher/Putnam in New York.

– “How to Care for Aging Parents,” by Virginia Morris, published by Workman Publishing in New York.

– “What’s Next?: A Guide to Valued Aging and Other High-Wire Adventures,” by Richard Griffin, Freda Rebelsky and Radcliffe L. Romeyn Jr., published by Eldercorps Press, Cambridge, Mass.

– “You Decide: Using Living Wills and Other Advance Directives to Guide Your Treatment Choices,” by Evelyn J. Van Allen, co-published by American Hospital Publishing, Inc. and Irwin Professional Publishing.

There’s also help on line. Try

– http://www.aoa.dhhs.gov < – http://www2.ageinfo.org/naicweb/elderloc/elderloc.html < – http://www.ttrc.doleta.gov/html/family-toc-all.html (for information on the Family and Medical Leave Act of 1993)CQ

The following is a partial list of resources to help with long-distance caregiving of aging parents. Call: