No place like home

the caregivers

Housing

 

 

 

Finding the right housing and care is top priority

WRITTEN BY BETH WITROGEN MCLEOD, OF THE EXAMINER STAFF

 

Monday, April 3, 1995

Front page in San Francisco Examiner


 

HOUSING

Once a high school athlete, Dwayne Hunn, 50, is now a coach, up against the toughest challenge of his life: rehabilitating his mother, Marthe, who suffered a stroke three years ago that left her blind and her left side paralyzed.

"They said I would be a vegetable," whispers Marthe, 75, who has made a remarkable comeback after putting her life in the hands of her two children. Hunn and his sister, Marlene, 40, split caregiving duties, he in Mill Valley and she in San Francisco.

Marthe's progress is testament to her willingness to change, and to the dedication of her children. "But it's not right, it's not fair," she cries. "Neither one of my kids is married. Their whole life is ruined."

For families with an aging parent who can no longer live independently, finding appropriate housing, with support services, is one of the most harrowing tasks.

The Hunns once considered a nursing home, "but the people there just sat like dumbbells," Marthe says. So they decided that one-on-one care at home was the only decent option.

Hunn boned up on neurology and behavior, and devised a program of intensive exercise, motivational therapy, acupuncture and natural foods. He dropped some computer jobs so he could work at home. He oversees workouts, cooks meals from scratch and tends to his mother's personal needs.

Hunn puts on some upbeat big-band era music and walks his mother along a ballet barre he installed along one wall, supervising kicks and deep-knee bends and encouraging her when she wants to give up. Then she stretches on the floor with a pulley, and does hand-strengthening and eye exercises. They walk to a nearby park, the grocery store and laundromat, joking with and teasing each other all day.

"I was raised a jock, so this is second nature to me," Hunn says. "But ma doesn't like to exercise, so sometimes we argue for hours."

Marthe calls it torture, but she goes along - even an herb tea that "tastes like pee water." Hunn roars, letting her get away with it. "She's persnickety - aren't you, ma?"

"It's a huge balancing act; it has taken a lot of time," Hunn says without resentment.

But he will not consider hiring help. "You can go out and get somebody at 20 bucks an hour, and you're broke after a while unless you're really set well," Hunn says, patting his mother's hand. "And at the same time, I'm not sure what 20 bucks an hour does for you that we couldn't do better ourselves. Right, ma?"

AH: More than you can possibly know<

Even though adult children find it hard to bring in outsider help for their parents, home care is one of the fastest growing segments of the health industry, a preferred option to the humiliation - and expense - of institutionalization.

Services can range from housekeeping and occasional assistance with bathing or meals to long-term intravenous therapy in a mini-intensive-care unit, which some caregivers say is like practicing medicine without a license.

Often, adult children find themselves operating like personnel managers for their ailing parents, having to recruit workers, check references, set wages and supervise.

"You're a banker, an emotional confidant, a friend, a medical advocate," says Robert Coe, founder of The Support Project in San Francisco, a workplace-education group for caregivers. "You're dealing with medicines, the medical bureaucracy, trying to find housing. You have to have an expertise in more than you can possibly know about - that's why people need help."

Although the time may come when there will be more regulation and organization of home-care workers, some of whom earn minimum wage but no benefits, good help is not always easy to find. Nor is it always affordable, reliable - or exempt from physical or financial abuse, especially when a parent's family lives far away.

For ethnic minorities, the problems often are compounded by cultural taboos against seeking help outside the family, by language and financial barriers, and lack of awareness of mainstream services, says Gerry Prestigiacomo, social worker with Family Caregiver Alliance's model ethnic outreach program in San Francisco.

Last year's passage of Proposition 187 so frightened one live-in caretaker that she left a family's home after five years. It's hard to find an affordable substitute.

"The situation now is everybody is afraid," says Ligia Villavicencio, 49, of San Francisco, who has chronic bronchitis and had recent knee surgery but now must care for her 74-year-old mother, who has Alzheimer's and diabetes and doesn't speak English.

"People want to earn more than you do," says Villavicencio, who has interviewed a lot of people.

"Most want $750 a month and up. I can't afford that. I need someone at least nine hours a day, five days a week. But people don't want to earn $4.25 an hour."

"Wherever families face long-term care crises at home, the pain and sacrifice are almost overwhelming," says Ron Pollack, executive director of Families USA Foundation, a nonprofit consumer health advocacy group in Washington, D.C. "The fact is, we as a society have not figured out how to help families cope with the enormous cost of long-term care."

AH: Finding the way<

America's families often navigate blindly to avoid institutionalizing a loved one. It can take weeks or months to find a stable solution. And sometimes, it's just dumb luck.

Berkeley hypnotherapist Michael Cohen, 54, whose 84-year-old mother, Sadie, has Parkinson's and now lives with him, hired a woman to live in full time, in exchange for room, board and $200 a week. He found her through a local church suggested by a social worker with Visiting Nurse Association.

For Susan Harper, 46, it meant moving with her mother to a new place in San Rafael and going on the payroll of the state-funded In-Home Supportive Services program, which pays minimum wage and serves low-income people.

Harper knew that her mother, Carolyn Hicks, 68, had some big problems - diabetes, stroke, emphysema, heart trouble. But the $1,000-a-month income allows Harper to run a home business and care for her little girl, too.

Zoanne Salter, 48, an attorney who lives in Portola Valley, hired a care manager who arranged in-home services in Walnut Creek for her 80-year-old mother, who has heart disease, cancer and the side effects of a stroke. "It's well worth the $150 a day," she says. "I don't know what people do who can't afford it."

Kathy Bei, 47, found herself sandwiched between a busy career in trade shows, a husband of 25 years and two daughters - and a 76-year-old mother who because of Alzheimer's could no longer live alone. So two years ago the South San Francisco resident went to court to get conservatorship, and was able to use her mother's finances to remodel her mother's home so they could live together.

"It's very satisfying to me; I'm very proud of myself," says Bei, who left her job and is a full-time caregiver now. "I think the quality of her life is very good. She's surrounded by people who love her."

AH: Group housing<

Many Americans associate long-term care only with nursing homes, but increasingly, group housing is becoming a major component. In fact, "assisted living" is the fastest-growing segment of the senior housing and health care industries.

These facilities combine individual apartments with varying levels of personal assistance, supervision, activities and health monitoring for those who can't live alone, but don't need 24-hour medical care in a nursing home. Supportive services might be money management or transportation.

The options range from room and board in a private home to

"life care" retirement communities that have graduated levels of care, up to skilled nursing. Although this is a viable solution for some families, neither Medicaid / Medi-Cal, the government health insurance for the poor, nor private long-term care insurance will reimburse costs, which commonly top $2,000 a month. Nor do most of these arrangements cater to a particular religion or culture.

Linda Flores' mother, Ethel Seip, 89, has been living at Western Park Apartments in San Francisco for 20 years. It's a HUD-subsidized facility run by Northern California Presbyterian Homes Inc., which also maintains a network of shared housing units in the Bay Area, homes where seniors combine resources but remain independent.

Flores, 51, an office manager at a venture capital firm, is happy that her mother, who has had a series of small strokes, can live in an affordable place that keeps an eye on her. Seip takes part in the center's social activities, gets three square meals a day in a common dining room and can keep food in her own kitchen. She also attends adult day care through UCSF-Mount Zion Center on Aging.

She pays about $350 a month for rent and meals, and Flores, who lives in Millbrae, hopes the situation will continue. But she has noticed a decline in her mother's abilities, and is concerned about the future.

"She has always been such an independent woman. It's terribly frightening to think of her in any other kind of facility," Flores says. "She's so happy where she is."

In Alameda County, a new program called HOPE for Elderly Independence combines Housing and Urban Development rental assistance with supportive services for elders, including case management, transportation, health screening and personal help. Qualified participants pay only 10 percent of the cost of services.

AH: Residential care facilities<

When a parent no longer can remain independent, a family will sometimes sell or rent the parent's home to pay for a move to a board and residential care facility.

These can range from three people with similar disabilities in a small home to 50 or 60 with a variety of ailments in a large facility with more staff and activities.

Most are licensed but rarely inspected, which can leave the door open to financial and other abuses if a family isn't watchful. (Records can be checked through state or local long-term care ombudsman offices.)

For Tiburon resident Marcia Sullivan, 52, finding the right place was a journey from selling her mother's home back East four years ago, bringing her out to live with her and her husband and then hiring live-in help through the College of Marin.

Recently she had to place her mother, Florence Lorion, 83, at Elderhearth, an Alzheimer's-specific board and care in San Rafael. She was able to draw on the support at Marin's Senior Access all along the way.

"Nobody could possibly do all this in their own home," she says of the 24-hour supervision and multiple activities that keep her mother stimulated and happy. The entire day is structured, from breakfast and exercise, snacks, dancing, arts and crafts or bingo, through dinner and nightly ice cream socials. Staff helps with personal care and daily living needs, and takes care of all housekeeping and laundry chores.

"She has a nice room, a roommate and a bathroom; and they serve the kinds of foods that people of her age group like," says Sullivan, who pays the $2,575 a month from sale of her mother's house.

"She has her own private physician that they will call if there's a problem. But mostly, there's so much more for Alzheimer's patients to do here than in a nursing home. This place is always busy, and that was really important."

Despite the fact that one Elderhearth resident wandered off recently and was found dead a week later, Sullivan is not ruffled. "What happened was unfortunate, but it was a very human error, not a negligence error. I have a feeling nothing like that's going to happen again. I trust them to watch out for my mother's best interests."

AH: Nursing homes<

Sometimes institutionalization is the only option for a frail elder who either needs more care than a family can provide, or whose finances make home care no longer affordable.

The emotional cost is always high. Beatrice Perry, 54, of San Francisco, says she cried for days after placing her mother in the Beverly Manor nursing home in San Francisco.

"I felt so guilty. I always thought she'd be with me till she died."

Perry's mother, Lucille Crandle, 85, lived with her for eight years, after her health began to deteriorate back in Louisiana. Perry eventually quit her job as a nurse's aide, and helped her mother through rough times. But after Crandle suffered a second, major stroke last May, Perry knew that the decision already had been made for her.

"It can happen so fast," she observes. "It really bothered me, but we couldn't afford to hire someone at home around the clock, and I just couldn't do it all myself," despite a very supportive husband and family.

"My mother didn't want anyone coming in that she didn't know, and you can hardly get people to come in for $4.25 an hour and do that kind of work.

"The state pays Medi-Cal benefits in a nursing home, but would only pay four to five hours at home," says Perry, whose mother's convalescent home is only two blocks away.

Because she is paralyzed on one side, Crandle needs to be turned every two hours to prevent bed sores. She has a stomach tube for continuous feeding because she can't swallow. The stroke also stole her voice.

Even though the nursing home is paid to do laundry and tend to her mother on a 24-hour basis, Perry isn't always satisfied.

So she does the laundry, bathes her mother in bed if she thinks the job wasn't done well, changes her diapers and brushes her hair. Perry knows best if her mother is having trouble, like a cold, and makes sure doctors and staff take care of it.

"You have to stay on top of everything," she says of nursing homes. "Sometimes there's an attitude that there's nothing special they need to do for someone. But that person still has needs to be met - they're not gone yet!"

Perry encourages her mother to join in bingo, to get out of the three-person room and socialize.

But even though Perry knows this was the right decision, she's still not happy about it.

"I was killing myself," she confesses. "My doctor said I was a walking time bomb, my blood pressure was so high.

"Some days my mother looks so sad - you're never really prepared for this. But if you try to live right and do the right things, they work out. I had to have a lot of faith."

(GLOSSARY OF HOUSING OPTION<


 

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2000 San Francisco Examiner
originally printed by the Hearst Examiner   Page A -