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 My
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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https://www.bridges4kids.org.
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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