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