As aged need more care, advocates warn of crisis U.S. urged to provide aid for families

June 02, 1993|By John Fairhall | John Fairhall,Staff Writer

Each had a retirement dream.

For Robert Allen Pejeau, a General Motors engineer and amateur silversmith, it was to make jewelry in his basement workshop. His wife, Jeanne, longed to visit Spain. Her mother, Emma Benedict, wanted to watch the waves from her house on the ocean in Delaware.

But now Alzheimer's disease has claimed the minds of Mr. Pejeau, 68, and Mrs. Benedict, 89. And Jeanne Pejeau, 65 and with a bad back, is caring for both of them at her home in Bethesda. It is an arduous job.

At 5:30 a.m. she pads downstairs to turn over her bedridden mother and feed her juice, very slowly, so as not to choke her. Then she trudges back up the stairs and gives medicine to her husband, who needs help dressing, bathing, eating and using the toilet.

"It's up and down all day," she says, until midnight, when she falls into bed.

She doesn't want pity, however -- just help. Like many of the millions of people trying to cope with the long-term needs of a relative, Mrs. Pejeau is strained emotionally, physically and financially.

Advocates for the elderly and disabled warn of a looming crisis unless the government acts to help people like the Pejeau family. The number of people needing long-term care, now estimated to be from 9 million to 11 million, is growing more rapidly than the population as a whole. By 2030, the number of elderly people needing such care -- the largest group -- will total 19 million, or one of every 18 Americans, estimates the American Association of Retired Persons.

Forty percent of those needing this care are under the age of 65; they include people disabled by accidents or diseases, children with birth defects and the mentally handicapped.

As part of its health care reform plan, the Clinton administration is expected to recommend a program of at least $15 billion that emphasizes home and community-based care. It would be a down payment on a more comprehensive program in the future that includes coverage of institutional care and that could cost $50 billion a year, according to AARP.

Polls show support

Polls show broad support for a national long-term care program, and administration officials recognize that without one a health reform plan might not be successful. "As a society, we are already paying dearly for long-term care and we're not getting our money's worth," says Judith Brown, chairwoman of AARP's board of directors. "Without question, the most expensive option we could possibly choose with respect to long-term care would be to do nothing and stay with the status quo."

Proponents of expanded government assistance aren't urging the replacement of families as primary care givers. But they say there are limits to what even a devoted person, such as Mrs. Pejeau, can do.

Plump and white-haired, Mrs. Pejeau is physically not the woman she was before all the problems began. "When I look at pictures of myself, I say, 'God, have I gotten old,' " she says. Then she laughs. Irrepressibly upbeat, a Roman Catholic with a deep faith in divine direction, she refuses to be depressed.

Group didn't help

Once she joined a support group but quit. "I found it very demoralizing, because I was coping a lot with what I had to do, and I heard people come in there with very little problems. . . . I thought, ye God, I don't need this."

Her role as care giver began in 1979, when she moved her parents from their beach home in Delaware to her house in Bethesda, after her father had a heart attack.

"It was very nice, actually," she says, describing how her parents lived downstairs while she and her husband remained on the second floor.

But home life deteriorated rapidly beginning in 1986, when her father died of a brain tumor and both her mother and husband developed signs of Alzheimer's. It's a progressive degenerative disease that destroys memory, produces personality and behavioral changes and ultimately results in death.

Mrs. Pejeau soon found her resources tested. She had been a homemaker all her adult life, not a nurse or a personnel manager, roles she would have to learn. Over the years she has developed an effective but costly system that is beyond the means of most people needing long-term care.

She hires half a dozen people to come into the house for varying periods of time. They include Fred Obeng, a "saint" who feeds her mother dinner, an hourlong task; Laura Swan, who comes in at 8 a.m. three days a week to help with bathing Mr. Pejeau; and Orrette Morgan, who relieves Mrs. Pejeau while she does errands.

Her eyes brighten as she describes how on most Wednesdays she'll get her hair done and meet friends for a long lunch at Carmacks in Chevy Chase. But each of the aides costs at least $9 an hour. "This particular day it was $90 for Emma," she says, poring over a receipt book while her husband dozed in a lounge chair close by.

His $20,000-a-year pension from GM, and her mother's $6,000 from Social Security, don't cover the costs of care and the normal costs of living for three people.

Money running out

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