Caregiving can take emotional, financial toll

Posted: Thursday, July 12, 2001

NEW YORK (AP) -- When Marilyn Raschka's parents hit their late 80s, it became increasingly apparent they were having trouble coping in their Hartford, Wis., home.

Her father suffered bouts of depression and at one point needed to be hospitalized. Her mother lost interest in cooking, stopped doing the laundry and ignored other chores.

''At first I thought I could handle it long-distance,'' said Raschka, who lived overseas and worked as a teacher and free-lance writer. ''I came home for a couple of months, but then I left again. I had a job, a life. I liked it.''

In mid-1995, however, Raschka moved back to Hartford.

''As the weeks went by, it became obvious I could go no farther than two blocks away,'' she said. ''I was wearing a rut in the sidewalk -- back and forth with meals, back and forth with medicine, back and forth with laundry.''

Her mother died at 93 in 1999, and Raschka now lives with and cares for her 94-year-old father, who has been in a wheelchair since suffering a stroke last year.

''There are times you feel very isolated, and there are times you feel stressed,'' said Raschka, who is 56. ''But in the end, you get through it all because you know you are responsible.''

Millions of Americans find themselves in the role of full- or part-time caregiver. It's especially true for Baby Boomers, whose parents are reaching the age when many face chronic health problems.

A study by the National Alliance for Caregiving and the AARP found nearly one-quarter of the nation's households have at least one adult who is caring for someone age 50 or older. Most often the caregiver is a woman.

''It's a myth that people don't take care of their relatives, that families typically put their relatives in nursing homes,'' said Gail Hunt, executive director of the National Alliance for Caregiving, a coalition of public and private groups based in Bethesda, Md. ''In fact, about 80 percent of the care given to older people is given by family and friends. And it can take a toll.''

There is a shortage of professional home care workers, and they're often expensive to hire, Hunt said. And many caregivers don't seek help, even when they're overwhelmed, she added.

''We hear caregivers say all the time, 'We haven't had a vacation in six or seven years,' because we had no one to take care of Grandmother,'' Hunt said.

Sandra Timmermann, director of the MetLife Mature Market Institute in Westport, Conn., said many caregivers' lives are further complicated by their own jobs and child care responsibilities. Some two-thirds of caregivers are employed, and four in 10 have children under 18 to care for, too.

A study done for MetLife in 1999 found many caregivers used vacation or sick days to care for ailing parents, while others cut back work hours or switched to part-time jobs. Still others took leaves, quit or retired early. The study estimated that the average loss in wages, Social Security benefits and pension rights totaled nearly $660,000 over a caregiver's lifetime.

''Eldercare now is where childcare was a few decades ago,'' Timmermann said. ''There's still a stigma to saying, 'I have to leave early to take my mother to the doctor.' You wouldn't feel that way if you said, 'My son has the flu and I have to go home.'''

That attitude, she believes, is changing as more Baby Boomers reach senior positions and formulate policy in their companies.

Health care specialist Carol Levine knows firsthand the problems of juggling work and caregiving. After her husband, Howard, was paralyzed in an auto accident in 1990, she had to provide around-the-clock care.

''I realized that the health care system did a great job at acute care, at saving lives, but was not very supportive on the chronic care side,'' Levine said.

An AIDS policy specialist, Levine turned her attention to the needs of caregivers and for the past five years has been a director at the United Hospital Fund in New York City. Her project involves working with hospitals, community groups and caregivers to develop models to make it easier for families to cope with the needs of the elderly and disabled.

Home care workers stay with Levine's husband during the day, but she handles his care at night. In recent weeks, she's also been traveling to upstate New York to help her mother, who is 89 and recovering from cancer surgery.

''So much of what you do is managing, decision-making, organizing,'' Levine said. ''No person should have to do it all alone.''

Still, it's only in recent years that services to help caregivers have become widespread.

One of the best resources is the Eldercare Locator, a directory service underwritten by the U.S. Administration on Aging. Caregivers and the elderly can dial 1-800-677-1116 to find local support services. The administration also runs a Web site at with information on caregiving and services and links to other sites.

Online chat rooms, such as those run by ElderCare Online at, are a popular way for caregivers to share their feelings and exchange tips.

''Caregiving is not overwhelmingly a medical thing,'' said Richard O'Boyle, president of the Islip, N.Y., company. ''It's about human relationships and family dynamics and the personal issues the caregivers face in their own lives. Sharing that with others helps bring perspective.''


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