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While counseling Alzheimer's caregivers,
Helene Ebenstein
was one herself. The experience enriched both roles. |
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For years, Helene Ebenstein
took her work home-but not in the way that most people
do. Helene, a certified social worker, fielded calls all
day from family caregivers of people with Alzheimer's
disease. But at home, she was herself a caregiver
for a person with Alzheimer's: her mother, Claire Ebenstein,
who passed away in November 2001. Having a foot in each
World-counselor and caregiver-has
enriched both roles, explains Helene, coordinator of the
Caregiver Resource Center at Mount Sinai Hospital in New
York City. "When people call, they're often very overwhelmed,
and certainly I felt that way too. I can call on my experience
to help these people."
A Difficult Diagnosis
Before joining Mount Sinai, Helene worked for the Social
Security Administration. As an "interviewer," she helped
social security beneficiaries navigate the shoals of federal
bureaucracy. She enjoyed working with older people, but
at 49 decided to take early retirement and enroll in a
degree program for social workers. Then, as she entered
social work school in 1995, Helene hit a shoal of her
own. "We realized that my mother was having trouble,"
she recalls. "Eventually it turned out to be Alzheimer's
disease."
Helene recalls her mother had been "acting strange" for
about a year. Helene's husband, Henry, noticed it first.
He saw textbook symptoms of dementia:
the impairments in memory and thinking that characterize
Alzheimer's disease. "She would repeat things," Helene
recalls. "She had memory lapses. She started forgetting
to show up for family events." In 1995, doctors diagnosed
Mrs. Ebenstein with Alzheimer's disease.
Although Ebenstein's work made some aspects of her transition
to caregiver smoother, as a daughter she found herself
no better prepared for her mother's diagnosis than anyone
else. "When it's your parent or your family, you're not
the professional anymore," she says. "I wasn't the one
who picked up on the signs of my mother's dementia; it
was my husband. If she had not been my mother, I'm sure
I would have, but I didn't want to see it. I was arguing
and saying it wasn't so. So it wasn't like I was all together
and could handle it. Not at all."
The Progression Begins
After much discussion, it was decided that Mrs. Ebenstein
would move into an apartment in Helene's house in Park
Slope, Brooklyn-the area in which she had lived almost
her whole life.
It wasn't easy. Helene emphasizes that her mother "took
great pride in her independence." Born in Poland in 1914
as Claire Schilit, she immigrated to the United States
when she was 12. She married Irving Ebenstein, Helene's
father, in 1938 and began to raise a family. That accomplished,
she went back to work as a secretary at age 50, mastering
the new technologies of electric typewriters and photocopy
machines. Mr. Ebenstein died of a stroke at 60, when his
wife was only 58. A short time after that, Mrs. Ebenstein
had a stroke of her own, then several more. This did not
defeat her, however. "She was an uncomplaining person,"
Helene explains. Even with Alzheimer's, she "just didn't
complain."
A Confusing Move
But even for this independent woman, the move to her daughter's
house was confusing-not uncommon for people with dementia
who are taken out of familiar surroundings. She stopped
going out on her own to shop because she couldn't find
her way home. This put greater demands on her children-caregivers.
"Because of the change from the old neighborhood and her
dementia, she was never able to go out on her own," Helene
recalls. "I was shopping and cooking for her, with the
help of my sister and brother supervising her in lots
of ways. I checked in on her every morning and gave her
her medications and breakfast." Weekends were a juggling
act. They had to make sure a family member was in town
when others were away.
Helene graduated with her degree in social work and had
begun to work full-time with frail elderly clients. Then,
in 1998, Helene found her mother on the floor one morning
with a broken hip. When she came out of the hospital and
finished physical rehabilitation, the family hired a home
attendant to be with her during the day Monday through
Friday.
Even with the help, the demands on Helene's time grew.
She found herself taking more and more days off from her
job. In 1999, she decided to make a change. "I felt I
needed a part time job because I couldn't really handle
all the responsibilities." Fortunately, she saw an advertisement
for a position at Mount Sinai Hospital.
A Dream Job
The hospital needed someone to help set up its new Caregiver
Resource Center. Part of Helene's duties would be fielding
calls from caregivers of people with Alzheimer's as well
as other disabling conditions, such as strokes
and head injuries. It turned out to be her "dream job,"
she says. "Working with family caregivers was something
I understood very well."
At work, Helene speaks to many people in the same situation
she found herself at the time of her mother's diagnosis.
A typical call comes from an adult daughter or son who
have begun to notice that a parent is suffering memory
lapses or neglecting personal care, bill payments, and
other day-to-day activities. The parent insists everything
is fine; the child is worried but unsure what to do. It
can be a frightening and overwhelming position.
Helene tries to get them started. Depending on the callers'
needs, she urges them to get the parent (or spouse) to
a doctor for proper diagnosis, offers personal counseling
and reassurance, or steers them toward local, state, and
federal services for caregivers.
Looking back on the past eight years since her mother's
diagnosis, Helene can think of some instances of "cross
pollination" between her work and her life as a caregiver.
For one thing, it helps her to empathize with her callers.
"When people are trying to explain what's going on, I
often had a similar experience," she says. "In the course
of my mother's illness, I went through a lot of the things
that happen at different stages of the illness: Reacting
to a diagnosis, when it's time to bring in home care,
and what it's like to have a parent who refuses any help
and says everything is OK. People say the worst thing
is when your parent doesn't recognize you anymore. Well,
that happened to me many times.".
But she doesn't believe that helping to care for her mother
made her better at her job than her colleagues who are
not caregivers. "I would say that having these experiences
enriches the work that I do," she explains. "But for me
to say that I can do this better than anybody else because
I was a caregiver? No, I couldn't say that. You don't
have to be an alcoholic to work with alcoholics, or a
cancer survivor to work with people diagnosed with cancer."
Taking it Home
However, Helene does think that her work prepared her
better in some ways for her role as a caregiver. "I don't
want to give the impression that it was easy to go through
because I knew what to do, but I think that knowing a
little bit about what resources are out there put me in
a better position than people who just don't even know
where to start," she explains.
For instance, at one point her mother's savings were exhausted
by the cost of home care and other expenses. The family
turned to Medicaid to pay for the home attendant. There
was just one problem: They couldn't be in charge of which
home attendant would be assigned to their mother. In the
course of her work, Helene had heard about a special program,
"consumer-directed home care," that allowed people to
hire a attendant of their choosing who is paid by Medicaid.
Helene's work also helped her to avoid some of the potential
pitfalls of being a family caregiver. One common problem
is the strife that can develop between adult children
of a parent with Alzheimer's. "A lot of times, what happens
is one sibling does all the work and the others are on
the sideline," she explains. "Or they have different ideas
about what should be done, like when to start home care,
and there's a lot of conflict. I knew I had to find a
way to work with my siblings. Even though we might have
had very different ideas about what should be done, we
had to work together."
Also, having so much knowledge about the disease allowed
Helene to prepare her brother and sister for the toll
Alzheimer's would take on their mother's mind, and how
long it would take. "I understood a little bit about the
early, middle, and late stages of Alzheimer's, so I could
see what the future was going to be before my sister or
brother," she explains. "When I would tell them what's
going to happen, that was very, very upsetting to them.
That also gave me some insight into how difficult it is
for caregivers to take this all in after the diagnosis."
Learning from the Veterans
On her own time, Helene also runs a support
group for adult children of people with Alzheimer's.
In the group, which meets twice per month, she has absorbed
some of the wisdom of people who had years on her as caregivers.
For example, she learned not to argue with the delusions
her mother experienced as a result of her dementia-like
the sound of a synagogue cantor she often heard. "I used
to try to convince her that there wasn't any cantor singing,
but I learned from my support group not to. If she's enjoying
it, let her enjoy it. It doesn't matter."
She also learned to avoid inflexible rule-following. "You
don't have to keep to some rigid schedule," she says.
"If you do, you're going to fight over everything." If
her mother didn't want to take her bath one day, "forget
about it," she says. "You've got to be flexible. I've
used that advice many, many times. And that's what I tell
home attendants, too." Another thing she stopped doing
is try to rush her mother to get ready for an appointment.
"It doesn't work."
The Long Goodbye
Alzheimer's disease is fatal, but not always quick, which
is why it's often referred to as the "long good-bye."
In 2000, as Mrs. Ebenstein's dementia progressed, things
got more complicated. "She started leaving the house,"
Helene says. "She would think she was on her way to work
or going to school. She'd have her pocketbook and nightgown
on, and she'd be on her way." By 2001, Mrs. Ebenstein
required a full-time, live-in attendant. She became frailer
and had a harder time getting around. Some days, Helene
says, her mother was more confused than on other days.
She often asked Helene, "Who sent you?"
Despite the relentless progress of the illness, some fundamental
aspects of Mrs. Ebenstein's personality endured-chiefly
her Jewish identity. "She kept asking all the home care
attendants if they were Jewish," Helene recalls. "When
the President was on the TV, she asked if he was Jewish.
That's why we always said, 'When she forgets to ask if
you're Jewish, when she forgets to ask if the food is
kosher, then we know it's all over.'" But Mrs. Ebenstein
kept asking right to the end, and died in her sleep on
November 27.
The Last Assignment
Even at the very end, the cross-pollination between home
and work continued to exert an influence. Having come
to understand and accept the inevitabilities of Alzheimer's
disease, the family had already pre-arranged Mrs. Ebenstein's
funeral. "We reaped the benefit the day that she died,"
Helene explains. "When it finally happened, we didn't
have to run down to the funeral home in shock and make
all kinds of decisions, which certainly made our lives
a lot easier." Confronting and understanding Alzheimer's
disease helped to get them through their mother's death,
just as it had helped them to be better caregivers during
her long illness.
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FURTHER READING
Caring for Yourself While Caring for Your Aging Parents,
by Claire Berman. (Henry Holt, 1997 (paperback), 272 pp.,
$16.00). This widely read book is a guide for adult children
who are caregivers for their aging or ill parents.
CAPP Caregiver Resource Center at Mount Sinai Hospital:
Contact Helene Ebenstein at (212) 659-8903. She welcomes
calls from family caregivers on any caregiving concern.
Address: 1425 Madison Avenue, Room L-4-89, New York, NY
10029. |
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