Sunday, February 11, 2001

'A special kind of love'

Disabled adults, elderly parents lean on each other

By Debra Jasper
Enquirer Columbus Bureau

        COLUMBUS — When Dorothy Rauh's daughter was born with Down syndrome 42 years ago, a doctor predicted Holly would be “like a little animal” who eventually would have to live in an institution.

        Ms. Rauh angrily dismissed the doctor's predictions, scooped up her little girl and took her home.

        “It was really crushing,” Ms. Rauh recalls. “I made up my mind right then that I would just accept her and be glad for anything she could do. That was the only way to get through it.”

[photo] Holly Rau (left) hugs her mother Dorothy.
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        At 82, Ms. Rauh is now fighting a far different battle. This time it's not to keep Holly at her side; it's to finally let her go.

        “Everybody tells me I should get her a place to live, because it's going to be so hard on her when I die. But I don't know what to do,” Ms. Rauh says. “I love her, and I don't want anything bad to happen to her.”

        More than 4,500 people in Ohio care for family members over age 41 with mental retardation. Many are aging parents struggling both to find decent caregivers for their children and with the deep pain that comes with separating after caring for them all their lives.

        “This is the generation that years ago was told the best thing for them to do was put their children in institutions, but they refused,” says Robert Nuebert, a Butler County activist whose son is mentally retarded. “Now, after 40 or 50 years, they are realizing for the first time that they are going to die and their children will outlive them.”

        For Ms. Rauh, the signs that she will soon have to part from Holly are becoming harder to ignore.

        When she tried to hang up her daughter's jacket one recent morning, she stretched too far and fell. She had to crawl to the phone and call 911 for help in getting back on her feet.

        “My arthritis is worse, and in the last month I've been in a lot of pain,” she says, sitting in her living room shortly after the medics left. “And last year I had a heart attack and a stroke.”

        Ms. Rauh, a retired government clerk who is divorced, knows she can't stay in her small Kenwood condominium much longer. Still, when a Lutheran nursing-home clerk called this winter to say there was an opening for her, Ms. Rauh turned down the offer.

        “I said I'd have to find a place for my daughter first,” she says.

[photo] Holly square-dances with Al Will, a volunteer at the weekly dances at the Golf Manor Community Center.
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        For her part, Holly won't even talk about moving away from her mother. When Ms. Rauh brings it up, she cries.

        “I know if I get incapacitated, something will have to be done, but I hate to upset her,” Ms. Rauh says. “We've been very much alone all our lives, and we lean on each other.”

        In many ways, Ms. Rauh needs Holly as much as her daughter needs her. When Ms. Rauh returned home after her stroke, it was Holly who cooked her breakfast in the morning. When they went out shopping and Ms. Rauh stumbled, it was Holly who took her arm.

        And these days, it is Holly who leaves for work each morning - taking the bus by herself to the East Galbraith Nursing Home to fold clothes in the laundry department.

        “She does so much for herself now,” Ms. Rauh says proudly. “She's such a good girl.”

        Aging parents often come to depend on their children with mental retardation for companionship, love and simply to feel needed, says Keith Banner, a support coordinator for the Butler County Board of Mental Retardation and Developmental Disabilities.

        He says such dependence — along with a shortage of government money to pay for care in group homes or apartments with staff on hand to help with daily tasks — can convince parents to put off trying to find a new home for their child.

        “They realize that once that child moves away, they are lost,” he says.

        Mr. Banner says he has worked with parents who had been advised by doctors decades ago to institutionalize their children and then pretend they were dead. Parents who lived through such horrible times aren't likely to trust the system today, he says.

        “It's very heroic what they did,” he says. “They provided their children a special kind of love.”

        Ms. Rauh is the kind of parent whose life is completely intertwined with her daughter's. She dotes on Holly, showing pictures of her in fancy dresses and boasting that she loves to square dance and bowl with friends.

        “I used to run her places every night of the week, but I was younger then,” Ms. Rauh says as she heads toward Holly's bedroom to show off one of her bowling trophies.

        Holly's room is very much the room of a teen-ager. A Reds poster hangs on one wall, and stacks of CDs spill onto her desk. A bright orange Bengals pillow adorns her single bed.

        “She wouldn't be able to take all of this with her if she moves, and this is her life,” Ms. Rauh says.

        Holly isn't the only one with memories that would be difficult to leave behind. Old photographs of Ms. Rauh when she was in the Navy during World War II line the condo walls. A curio cabinet filled with glass dolls sits in one corner. Small chocolate cookies on delicate white china plates fill the kitchen table.

        “I never felt old until I had that stroke,” Ms. Rauh says.

        She says she has tried to plan for her own death but worries there won't be enough money left for Holly to go dancing or bowling on Saturday nights. Perhaps, she frets, no one will ever care enough to take her daughter on vacation again.

        “If I go to a nursing home, I'm afraid they will just put her anywhere they have room and Holly wouldn't be happy with just anybody,” she says. “She's my girl and I love her and they're not going to do that to her.”

        She motions out the window just as Holly heads up the path toward home.

        “When she was a baby, and she'd raise her head, I'd run and get the camera. I was so happy,” Ms. Rauh recalls.

        “We've always been so close. And breaking away is just so hard.”

- 'A special kind of love'
Aging parents of mentally disabled worry ...

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