More Families Take Care of Elders Across the Miles

When Jean Gould counts the flights she has taken from Boston to Florida to help care for her mother, even she is surprised by the number.

This month marks her 12th trip in 15 months, adding up to 15 weeks in the Clearwater area. Her mother has also come to Boston twice, for another 10 weeks.

"My husband adores her and she adores him, but there's no question that this absolutely dictates our life," says Ms. Gould, an author who is compiling an anthology of essays on caregiving called "Dutiful Daughters."

Caregiving has been called the fastest-growing unpaid profession in the United States. More than 22 million American households - 1 in 4 - are involved in caring for an older person. No figures track the number of those who, like Gould, perform their ministrations across the miles. But as people live longer and families grow more scattered, elder-care specialists predict that a demographic tidal wave will dramatically increase the ranks of long-distance caregivers.

"It's going to become a more critical issue for the country," says Suzanne Mintz, president of the National Family Caregivers Association in Kensington, Md.

Already 34 million Americans are 65 or over, exceeding the population of Canada. In addition, the average couple today has 1.9 children but more than three living parents, including grandparents.

"Years ago we talked about the sandwich generation - caring for older parents and dependent children," says Deborah Briceland-Betts, president of the Older Women's League in Washington. "Increasingly, it's a club sandwich, with great-grandparents adding another layer. It's not unusual to see women in their 60s caring for their parents."

Among those on her own staff with caregiving responsibilities, she says, "Every single one of us is doing it long-distance." She herself commutes monthly to Michigan with her six-year-old daughter to help her mother and mother-in-law.

Beyond obvious costs in transportation and time, long-distance caregivers face particular challenges.

"You're so torn, because you've got responsibilities within your own life, as well as the need and desire to help your relatives," says Ms. Mintz. "But not being physically there impedes that. You don't know what's going on in the same way, so you don't know how to help as much."

Aging-services network

Gould's Boston-to-Florida shuttle began when her mother needed help while recovering from an arm injury. When Gould arrived, she faced a challenge common to many new caregivers - a lack of knowledge about resources in the community.

"I didn't know the differences between nursing homes and assisted living places and retirement homes," she says. "I didn't know anything about home health aides or elder-care services, nor did I know anything about Medicare."

After calling many service agencies, Gould found a social worker who gave her expert guidance. They arranged for home health aides and neighbors to help. Eventually her mother sold her condominium and moved into an assisted-living facility.

Yet caregivers often remain reluctant to reach out. Beth McLeod of Antioch, Calif., who commuted to Kansas for nearly two years when both her parents became seriously ill, says, "We don't know how much help is available because we're not socialized to ask. We're socialized to be superwomen and independent." She took six unpaid leaves, totaling three months, from her job at the San Francisco Examiner.

Ms. McLeod, who is writing a book about caregiving, also sees a need for services that are better coordinated. Although community resources exist everywhere, even in rural areas, she says, "The aging-services network is fragmented. It's not visible, and it's not well funded."

In addition, McLeod says, "There really isn't long-term care policy in this country that addresses chronic care and gives it the attention that acute care is given. We're geared toward institutionalization, not home care. And yet that's where we all want to live out our lives - at home."

To achieve that goal, Angela Heath, author of "Long-Distance Caregiving: a Survival Guide for Faraway Caregivers," outlines two essential steps. First, determine what a relative needs, then learn about the options available.

She suggests beginning with a call to the Eldercare Locator, a toll-free number administered by the National Association of Area Agencies on Aging. Callers are connected with the local agency, which can provide information on services such as transportation and home-delivered meals. The agency can also make a free or low-cost assessment of an older person's need, Ms. Heath says.

Caregivers can also get a directory listing community services. "As the person's needs change, you don't have to start at ground zero," says Heath.

Another approach is to consult a geriatric care manager, located near the older relative, to recommend a plan for care. A first assessment typically costs about $150, says Carolyn Smith of the National Association of Professional Geriatric Care Managers in Tucson, Ariz.

Drawing on the community

Care specialists also urge caregivers to seek support from relatives, friends, neighbors, and churches or synagogues. "Typically, but not always, you'll find there are a lot of people in a community who will be willing to help," says Heath.

Advocates also raise another concern: Who will care for the caregiver? Renee Glazier, who leads a monthly Adult Children of Aging Parents support group in Newton, Mass., says, "One of the lessons we're able to teach each other is how to set limits and how to take care of ourselves. If we don't do that, we can't take care of anybody else."

Accomplishing that goal, elder-care specialists say, will require more - and more affordable - respite care to give caregivers time off. Adult day care can be expensive and is not available on evenings and weekends.

Despite these continuing needs, signs of progress do exist. Although three-quarters of caregivers are women, men are gradually becoming more involved, particularly if their wives work. "We have many men who call regarding their parents and their in-laws," says Lorraine Sailor, office manager at Children of Aging Parents in Levittown, Pa.

Legislation introduced in Congress last spring would require the Census Bureau to count family caregivers in Census 2000. Supporters see it as a first step in gaining recognition and aid for families.

The Internet also promises to help distant caregivers. Next month the Ohio Department on Aging will launch a Web site listing senior services in that state.

"Anybody in the country, if they have a relative in Ohio, can go on the Net and access the service, free of charge," says Chuck Mondin of the United Seniors Health Cooperative in Washington. The program will serve as a prototype for other states.

Whatever a family's distance or proximity, Mintz cautions adult children against taking too much control. "When we're trying to help our folks, we have to understand their side of the story as well," she says. "The tendency on our part is to try to be the parent, and impose. But we're not their parents. They've got a right to make their own decisions. Unless there are safety issues involved, or dementia, just to impose our will really isn't fair."

However challenging or time-consuming caregiving is, many who do it find rewards, not only for themselves but for their families. Describing her daughter's attachment to her maternal grandmother, Ms. Briceland-Betts says, "She makes a lot of things for her at school. It's like she's trying as hard as she can to make her grandma feel better."

Giving something back

Karen Lourence Humphrey of Newton, Mass., cared for her husband's aunt in the couple's home for five years. For four years she also assumed responsibility for her mother-in-law, who lived next door. Although these tasks sometimes burdened the family, she says they also taught her two children "some patience and appreciation" of their older relatives.

Now, she finds, "The children are very good about visiting them in the nursing home and assisted-living facility. They don't like to stay too long, but that's OK. They're very tender in their affections toward their grandmother and their great-aunt."

Caregiving, McLeod observes, "forces us to find out what really matters in life. That changes our priorities, our relationships, our jobs. It has any number of ripple effects."

For her part, Gould has been able to review her mother's life and learn things she didn't know as the two talk and look through photo albums.

"We've been able to say how much we appreciate each other and love each other," she says. "I'm glad I can give back at least some of what she had given me when I was a kid."

Resources

Eldercare Locator

800-677-1116

A public service administered by the National Association of Area Agencies on Aging in Washington. It connects callers with local information and referral services in a particular area.

Children of Aging Parents

Levittown, Pa.

800-227-7294

National Family Caregivers Association

Kensington, Md.

800-896-3650

www.nfcacares.org

National Association of Professional Geriatric Care Managers

Tucson, Ariz.

(520) 881-8008