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.
According to the Alzheimer's Association, showing one or more of these signs indicates that a caregiver is at risk for stress-related health problems:
- Denial about the disease or the symptoms your loved one is suffering: "I know mom's going to get better."
- Anger at the person with Alzheimer's or others; anger at the lack of effective treatments and the perception that people don't understand what you are going through.
- Social withdrawal from friends and activities that you once enjoyed: "I just don't want to be around people."
·- Anxiety about facing another day or what the future holds for you: "What will I do when she needs more care than I can possibly provide?"
- Depression that begins to break your spirit and compromises your ability to cope: "I just don't care anymore."
- Exhaustion that makes it nearly impossible to complete daily tasks: "I'm too tired to handle this."
- Sleeplessness caused by a never-ending list of concerns and pressures.
- Irritability that leads to moodiness and "snapping" at others.
- Lack of concentration that makes it hard to perform familiar tasks, such as remembering an appointment with the doctor.
- Health problems, mental and physical, that begin to take their toll on your life: "I feel tired and sick all the time."
- 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.