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Bridges4Kids LogoMy Brother's Keeper
In thousands of families, an emerging generation must care for a disabled sibling when parents are no longer able.
by Peter Jensen, Baltimore Sun, November 8, 2003
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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."

McHugh, 74, whose 72-year-old brother, Jack, has a mental disability, says parents need to start talking about the transition from the time their children are teens. She notes that while some siblings may dislike the burden, few ever refuse it.

"You know someone else will never care as much about your brother or sister as you do. You don't want other people deciding what will happen," she says.

Dean Hoffman, 53, a Towson Internet consultant, knew from the time he was 10 that eventually he'd be responsible for his older brother, Kurt, who lives in a group home in Timonium. With their parents' health in decline, that time is drawing near, but the process has still been difficult and anxiety-filled.

"There's a lot of emotion involved," says Hoffman. "My parents worry most that he'll be lonely when they're gone."

It's also a lot for a sibling to learn. Between understanding what resources are available - from a jumble of institutions, public and private - and learning the legalities (the concept of guardianship alone could stump a law school class), the details can be mind-numbing.

"You'll go along thinking you've filled out all the forms and you'd get a call that you didn't sign form such and such. And then you realize that you never saw any form like that," recalls Mary-Jo Dale.

Dale credits a variety of organizations from her local Arc chapter to Jewish Family Services with helping her find the right opportunities for her brother. But no one has been more helpful than the Maryland Trust for Retarded Citizens, a Westminster-based nonprofit group that advocates for people with mental disabilities.

"They taught me the right questions to ask and who to ask," she says.

Moving into the world

It's been quite a journey since late 1999, when her mother became too ill to look after her son. Dale got a call while vacationing in Italy that her mother had cancer and just months to live. Within a matter of days, Ford had moved in with his sister and her husband, Robert, occupying the guest room of their home in Washington Hill near Patterson Park.

"There were stresses. We had arguments," recalls Robert, who was dealing with his own ailing mother at the time. "If I questioned what was going on, she'd get frustrated. Sometimes, I didn't know whether to step in or stand aside."

In many ways, the family was lucky. Ford's disability is mild. Although he has difficulty reading or writing more than his name, he can shower, clothe and feed himself without assistance. He loves trains, watching movies and listening to music. He can sit in a crowded concert hall, listening intently to a Baltimore Symphony Orchestra performance without once talking, a quality his sister wishes on more BSO patrons.

"It wasn't all a bed of roses," she says. "He had moods and things I had to learn to deal with."

Gradually, Dale learned more about her brother. For the first time, she saw his medical records, including a report from the 1950s that suggested he should eventually be put in an institution, a recommendation that seems barbaric by modern standards.

"They said he'd never be able to live on his own or have a job," she says. "I guess my parents accepted it."

During their four years together, the two talked often. They got to know each other better. Within a year of their parents' deaths, Dale found her brother his first job. Soon she had him socializing with others, joining clubs and looking to live independently.

"My brother and I have always been close. We got closer," she says.

Their relationship is easier than it used to be, but it's still a lot of work. Dale visits at least twice each week and talks to him most days. She may have to drive him places or make sure he gets to a doctor's appointment. She checks the mail frequently for important notices, things he wouldn't be able to understand on his own.

Her only regret is that they didn't press her parents earlier to talk about her brother's future. Much of the painfulness of the transition might have been avoided.

Joan Kolobielski, a 77-year-old retired Harford Community College psychology professor, could be a role model for how such a transition can be accomplished. For years, she has prepared her sons Andrew and Gregory Sobel to look after their disabled sister, Christine, 49.

They're familiar with Christine's group home, know about the day program she attends, and see regular reports on her health status and progress. When their mother dies, Christine's life will change only in the way her brothers will be affected - they will mourn and then they will go on.

But even with all that, she refuses to think of the process as a smooth or easy transition from one generation to the next.

"No sibling asks for this responsibility. They inherit it," says Kolobielski, who lives in Idlewylde. "Everything is painful. Everything is difficult. It takes a tremendous amount of energy just to tactfully make sure things are happening as they should. There aren't any easy solutions."

What siblings should do

Advocates offer these suggestions to siblings who may soon face responsibility for a brother or sister with a developmental disability:

Have a conversation with your parents now and develop a plan. Often, parents are fearful about the transition, too, and are reluctant to talk about it.

Talk to your non-disabled family members, too. Make it a frank talk. The responsibility shouldn't automatically fall solely on the eldest sister - as is often the case, experts say.

Educate yourself. Learning the intricacies of your sibling's life - and the programs involved - can easily become a full-time job.

Explore your own feelings about this. No law mandates sibling involvement. You'll need to gauge what level of commitment you're ready to handle. You have a right to your own life.

Consider reaching out to support groups. One useful resource is SibNet, a no-cost way for adult siblings to communicate through e-mail. For more information, contact Don Meyer at 206-297-6368.


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