My brother's keeper

In thousands of families, an emerging generation must care for a disabled sibling when parents are no longer able.

Health & Fitness

November 09, 2003|By Peter Jensen | Peter Jensen,SUN STAFF

Even when they were ailing, Betty and Alvin Ford refused to talk about their son's future. So when the elderly Mount Washington couple died - little more than a year apart - all responsibility for David Ford fell on his sister's shoulders.

Mary-Jo Dale loves her brother. But she was ill-prepared to be the sole provider and caregiver to a middle-aged man who, because of a developmental disability (and perhaps his parents' protective instincts) had lived his life as a virtual child, never holding a job or living on his own.

"I had tried to talk to my parents. My mother would always get defensive. She said everything would be taken care of," recalls Dale, 58, an administrative assistant at the Johns Hopkins School of Public Health. "Well, if it's taken care of, I still don't know about it. They didn't even have a will."

Many families are facing similar transitions as a passing generation of elderly parents leave behind the responsibility of a son or daughter with a mental disorder or developmental illness. The person most likely to assume that caretaking role is a brother or sister, baby boomers who may already be raising their own children or caring for elderly relatives.

"Most of us may be in the sandwich generation, dealing with kids and our parents, but they are in a club sandwich generation, caring for a brother or sister, too," says Don Meyer, director of the Sibling Support Project for the Arc of the United States, based in Seattle, and a leading authority on siblings of the disabled.

It's a relatively new problem, and at least three factors contribute to it:

* Disabled people are living longer - people with Down syndrome, for instance, a condition that might have ended a life in early childhood, now are likely to outlive their parents.

* The growth of community-based programs mean the disabled are no longer shuttered off in institutions for life.

* A scarcity of government resources makes it difficult for families to find reliable housing and care for their loved one.

"The system requires family involvement, whether it's from a parent or a sibling. You always have to have someone advocating for that person," says Cristine Marchand, executive director of the Arc of Maryland, a nonprofit organization helping people with mental retardation and their families. "Getting services is complicated and a sibling has to devote their time fully to the situation to understand this."

Professor Tamar Heller, head of the disability and human development department at the Chicago campus of the University of Illinois, estimates that at least 500,000 U.S. families are headed by one or more parents age 60 or older who look after a son or daughter with an intellectual disability. About a quarter of those are caring for that person at home.

"They develop patterns of interdependency that satisfied that adult child and themselves," says Tom Fish, director of social work and family support at Ohio State University's Nisonger Center, a research center for the developmentally disabled. "They didn't want to impose on the other children. It just gets very, very complicated, and letting go is not so simple."

Making the transition

After David Ford moved in with his sister, Mary-Jo Dale faced three years of nonstop work to find a better life for him. She waded through a labyrinth of government programs, completed reams of paperwork, recruited a team of advocates, and found herself constantly cajoling, pleading and hectoring on his behalf.

Last April, he signed the lease on his own apartment (a photograph of that proud moment sits on his coffee table) in northwest Baltimore. He has a full-time job in a landscaping crew and by his own estimate has never been happier.

"It's nice," Ford, a gregarious and likable 52-year-old, says of his two-bedroom home. "I have responsibilities. I do the vacuuming. I change the bed linens. I clean the bathroom. I like it."

Advocates say the Ford family's situation can be painful for all involved. Older parents had their children at a time when few services were available - and institutions were a frightening alternative. Families like the Fords may have chosen to hold onto their son or daughter through adulthood, and may still be uncomfortable with change.

But even in those families where the disabled person is relatively independent, the transition from one generation to the next may not be easy. Even the best situations can sour - programs are scaled back or discontinued, relationships change, health problems become worse. Siblings can find themselves resenting the burden of constantly looking after someone about whom they may foster ambivalent feelings.

"As the sibling to the disabled person, you have all kinds of mixed feelings - anger, guilt and resentment - toward your brother or sister," says Mary McHugh, a Chatham, N.J., writer and author of a book, Special Siblings (Brooks Publishing, 2002), that explores the issue. "We all have some part of that in us, besides the love we feel."

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