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COMMITMENTS : Taking Charge : Not everyone is up to caring for a disabled sibling. But some can't imagine life any other way.

October 23, 1995|LAURA HENNING | SPECIAL TO THE TIMES

Once when Audrey Clurfeld was in line to catch a plane, she ducked out to call her 37-year-old retarded brother, Joey. Nothing could keep her from the Sunday afternoon ritual.

"That phone call means so much," explains Clurfeld, of Redondo Beach. "My family and I are all he has."

Dr. Edward Ritvo, a UCLA professor of child psychiatry, says this caring attitude is typical of adults with a developmentally disabled brother or sister.

"They learn early that life isn't fair," says Ritvo, who specializes in autism and mental retardation. "They learn to give to those who have not."

John Siegel of the Mental Health Assn. of Los Angeles, however, sees a very different picture. He says mental illness can tear families apart. The siblings are often too emotionally exhausted to take charge of their adult mentally ill brother or sister.

"It's not that they're uncaring," he says. "But in many cases they feel helpless to find adequate care."

Jeff Strully understands those who cannot or will not take responsibility for a disabled sibling. He is director of the Jay Nolen Community Services for the autistic.

Some people can barely manage their own lives, Strully says, let alone that of a sibling with a disability. They may also have a spouse and children to worry about.

Furthermore, it is a huge commitment, says Mike Danneker, director of the Westside Regional Center, which serves the retarded.

"Mental retardation isn't something that people will find a cure for in the near future, so taking on the care of a disabled sibling is a lifelong responsibility, like adoption," he says. "It's not just for next month or next year. It's lifelong."

But it is a commitment that Monica Cazares has been willing to take on ever since she was a teen-ager. Her brother Matthew, now 12, has Down's syndrome.

When Cazares was younger, her parents told her that, should anything happen to them, Matthew would go live with his grandparents or godparents.

"I said, 'That's crazy! He's coming with me,' " she recalls blurting out.

"I can't imagine him with anybody else," adds Cazares, who is now studying psychology at USC. "I don't think anybody else could take care of him. I couldn't imagine abandoning him."

For Rose Hirahara-Yamashiro, care of a disabled sibling is a matter of cultural values.

"We wouldn't want to send her away," Hirahara-Yamashiro, an Alhambra hairdresser, says of her 26-year-old sister, Yuko, who has Down's syndrome. Among Japanese Americans like them, she says, "It's the custom. I wouldn't want to see her off in a home."

But taking in a disabled sibling may not be such a good idea, says Toby Arenberg, a volunteer with the Autism Society of Los Angeles.

"That's the old way of doing things," she says. "You're looking upon the handicapped as children, not as adults. All they need is help in a supported living situation."

Strully agrees, saying it is healthier for the normal and disabled siblings to lead separate lives. "Otherwise it can be suffocating."

So why will some people happily take on the responsibility of a handicapped sibling while others cringe at the thought? Strully explains that adults who helped care for a disabledbrother or sister when they were children tend to continue into adulthood.

But people will shun this responsibility if the disabled child was "put away" or if the siblings were discouraged from interacting with him or her when they were children.

Parents also fall into one of two camps. Either they expect their other children to take over once they become elderly or pass on, or they would not dream of "burdening" them with the responsibility.

They want them to have a "regular life, which, of course, they didn't have," Arenberg explains.

She says she falls into the second category but, as she gets older, she admits to being relieved that her two sons, who are engineers, take an interest in the well-being of their autistic sister, Ilene, 34.

Meanwhile, Clurfeld frets about the future. As her parents approach their 70th birthdays, she wonders who will care for her brother once they are gone.

Joey has lived in the same group home on Long Island, N.Y., for the past 15 years. She always assumed he and his housemates would grow old together. She wonders how she could ask him to move out here. Or maybe she would move back East.

She says the sacrifice would be worth it.

"I just love him and I wouldn't trade him for anything in the world," Clurfeld says.

"And I wouldn't want him to be any different. He has a wonderful personality and a big heart. Nobody makes me feel so special."

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

A Pledge Not to Be Taken Lightly

Here are some things to think about when deciding to take on the care of a disabled brother or sister:

* Dig down deep. Is this something you really want to do? The responsibility must be taken on freely and with love. One expert in the field said a "martyr" relationship is unhealthy. If you cannot undertake this responsibility, do not feel badly. You have to do what is right for you.

* Decide how much effort you want to put into your sibling's care. It can range from calling him once a month to taking her into your home. Do what ever is appropriate for you and do not feel guilty about it.

* If you are interested in your sibling's care, call the association pertinent to his or her disability. It will put you in touch with the resources available for both of you.

* Whether or not your take on the care of a disabled sibling, membership in the Sibling Network ([818] 894-4305) might be helpful. Adults with disabled brothers and sisters often grow up with heavy emotional baggage. Belonging to this support group might improve your relationship with your sibling.

* Another organization worth checking out is the California Alliance for the Mentally Ill, which will hold its annual conference Friday and Saturday in Los Angeles; the theme is Beyond Stigma. For information, call (916) 567-0163.

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