Family Matters: Rx for Care: Being There
It has become common for adult children to support elderly parents through long years of illness and decline—a stressful situation that nevertheless can have rich rewards.
In the Jewish community, we know what to do when someone dies, and we do it well. We pay shiva calls. We make sure there’s a minyan. We bring food (whether it’s needed or not).
In our community, we also know what to do in a medical crisis, and we do that well. We visit. We make calls. We schlep kids. We bring food (whether it’s needed or not).
But we aren’t so good at knowing our roles in that in-between stage, during those long years—decades, even—of chronic illness and slow decline.
Modern medicine has elongated the way we age and die, but our customs, our expectations, have not quite kept up. “We still think we’ll wake up dead one day,” says Dr. Elizabeth Menkin, a palliative-care specialist in California who works with the elderly and their families.
In fact, it is often a slow, sad process that takes a toll not only on the patient but on the family caregiver—often an elderly wife with multiple and worsening health problems or a grown daughter juggling the needs of her spouse, her kids, her job and aging parents miles away.
Both the chronicity and the longevity of caring for frail elders has changed,” says Rabbi Dayle Friedman, who runs Hiddur: The Center for Aging and Judaism at the Reconstructionist Rabbinical College near Philadelphia and who has also worked as a geriatric social worker. “It’s more difficult and it’s more complex. We’ve always had the Fifth Commandment, and we took care of bubbe. But bubbe lived with the family, bubbe didn’t have Alzheimer’s for 20 years, and bubbe’s grandchildren lived in the same town. And her daughter wasn’t working.”
Financially, caregiving is a huge stress; people don’t comprehend all the holes in the long-term care system until they fall into them. Spiritually, caregiving brings out stark questions about meaning and loss. Emotionally, caregiving involves isolation, worry, exhaustion, guilt—and sometimes intensely rich rewards.
“It has its glories and it has its pains,” says Marcia Stein, executive director of New York’s Citymeals-on-Wheels. She helped coordinate care of her widowed mother in Rhode Island for nearly 20 years while working at a demanding job and caring for her own children and grandchildren.
“It’s very tough to care for someone and watch the decline, the constant decline,” she says. “When I visited, I would have a sense of dread because when she woke up, it would always be worse than the last time I saw her. But there were moments when the sun broke through the clouds and she said the most wonderful things.”
Federations, synagogues, sisterhoods, Jewish family services and seminaries have begun grappling with how to understand and support caregivers, but the Jewish community has not figured it all out yet—any more than has American society as a whole. Many families dealing with elderly relatives or those suffering from Alzheimer’s disease or other forms of dementia are shocked to find that Medicare does not finance long-term care. Medicaid generally covers only those with low income or who have spent all their assets on nursing homes, which can cost $70,000 to $80,000 a year and well above that in many parts of the country.
Coverage for visiting nurses is generally available only to homebound patients. Much of the costs of caregiving end up falling to family members—an estimated $300 billion to $350 billion in uncompensated care a year.
But there are some innovative programs. Social workers are now being brought into the synagogue to serve as hands-on resources for families in distress. Organizations such as New York-based DOROT offer workshops and classes over the telephone (or on the Web) to provide practical information for the caregiver as well as a social link to the outside world. Classes range from how to care for someone with Parkinson’s disease to courses on astronomy or poetry. Hillels, youth groups and day schools are beginning to step up their work with older people.
Within the community, a basic goal is to not let the caregiver disappear and communal bonds fray. Friedman, for instance, notes that her shul honors both family and professional caregivers, asking them to stand for a special misheberakh prayer during the High Holidays. “It’s a small thing, but it’s a moment when that profound and life-changing experience is noticed and acknowledged,” she says.
Bikkur holim (visiting the sick) should be ongoing, not a brief episode, says Sandy Mendelson, a cardiologist in Washington, D.C. He and his wife, Adina, helped coordinate care for five relatives over 90 who lived near them. (They delicately guided the family’s sixth nonagenarian, an aunt, to a nursing facility near her son’s home in Philadelphia.)
“If you are talking about visiting, you have to keep visiting,” says Mendelson, whose elderly parents, aunts and uncles benefited from the family’s multigenerational bonds to Adas Israel Congregation in Washington.
Ann Kline of Kensington, Maryland, became a hospice volunteer and worked with the bikkur holim program at nearby Tifereth Israel Congregation after losing both of her parents within three months more than a decade ago. More recently, she gave up her law career to train as a lay chaplain.
“People are not prepared for all of the demands on them as a caregiver,” says Kline. “Your life can get very narrow and it’s very easy to get very worn out by the day-to-dayness of it.
“You may have a plateau, have a routine. Then something changes, out of the blue,” she explains. “Or you can have a situation where every day the person receiving the care is different. Your life gets narrowed to whatever is going on with that person.”
She recalls one couple who loved to go out, socialize, see plays. Then the husband had a stroke, leaving him paralyzed from the neck down. The only person he responded to was his wife, and she was afraid to leave his side. Finally, she agreed to venture out, leaving Kline to watch her husband. Soon she began to look forward to Kline’s weekly visits, her chance to resume her bingo games.
Sometimes our role is to convince the primary caregiver—mom or dad—to accept help. They often refuse, or fire everyone you bring in. Susan Rosenthal, coordinator at the National Center for Jewish Healing in New York, has seen countless families, including her own, in this tug of war. It would make a great comedy/reality show, she says jokingly, which she would call “Over My Dead Body.”
Social workers who repeatedly see this scenario play out recommend that the relative doing the persuading—often the adult daughter or daughter-in-law—frame it as a request. She can explain it as something she needs for her own peace of mind: “Mom, I know you want to take care of Dad, but I would feel so much better if you let someone help out for a few hours a week, that way you can get to the doctor/bridge game/sisterhood meeting.”
Professional geriatric case managers can also intervene, helping the caretaker understand that if they take care of themselves, they will be better able to help their loved ones. Trained volunteers, like Kline, can also win the trust of the caregiver.
Marcia stein’s mother, dora Dimond, was determined to remain in her own home after her husband died in 1987. She did not want assisted living and certainly was not going to a nursing home. She would not even move in with either of her daughters. But when she broke a hip some years later and began to decline, her daughters bargained with her: If she wanted to remain at home, she would have to make concessions. She would have to have four hours of help a day. She would have railings and other safety modifications made to the house. And she would have to wear a life-alert device. Dimond reluctantly agreed.
She got frailer and, in her final years, developed dementia. Her vision deteriorated. She could no longer handle basic tasks, such as paying the phone bill. However, the family was fortunate—not only because Stein had professional expertise with homebound elderly but because a neighbor caring for her own 92-year-old mother was able to step in and “manage” Dimond’s care and her increasing number of caretakers. The extended family remained in close contact and visited often. They found a kosher meal service that delivered and tapped into geriatric programs at nearby Brown University’s Alpert Medical School in Providence, where doctors are skilled at managing the health challenges of people who want to age at home.
But that option is not always available in a country with a graying population and a shortage of geriatricians.
Cheryl Tarash, a social worker at Jewish Family Services of Durham-Chapel Hill Jewish Federation in North Carolina, sees many far-flung families struggling to do what’s right. The area’s Jewish community is deep-rooted but small, and services are limited compared to cities such as New York and Los Angeles.
Tarash helped plan a national conference earlier this year linking clergy and clinicians on Jewish themes at Duke University Divinity School’s innovative Duke Institute on Care at the End of Life in Durham, North Carolina. She is constantly trying new approaches to deal with older people and stressed caregivers. But it is hard. Some people she reached out to felt being a caregiver was a stigma or that taking help was an affront to their competence. She has also experimented with “lunch-and-learn” sessions designed to take a practical and educational approach to disease.
In an even smaller community, such as Knoxville, Tennessee, with about 2,000 Jews, resources are limited. Nancy Britcher, director of Jewish Family Services of the Knoxville Jewish Federation, is basically a one-woman show. Britcher’s tasks range from helping out-of-town relatives choose a nursing home for a loved one to, occasionally, delivering a chicken for dinner. “I had one family [that] asked if the home health aide would be Jewish. I told them ‘You’re kidding, this is Knoxville,’” she said. But in a small community where people know each other, Britcher often gets a discreet call when someone is not doing well.
Sometimes it is hard to get people to accept help. She recalls one elderly gentleman who admonished her, “I don’t want a bunch of old Jewish ladies sitting around looking at me!” Britcher, who has known the man and his family for several years, checks on him herself now and then.
Families may have to coordinate care across hundreds or thousands of miles. Distance is guilt provoking; so is putting aging parents in an institution. Professionals who work with these families have remarked that the caregivers do not embrace that label, do not think that they deserve to be thought of as giving care if they aren’t living down the street.
That is how Susan Rosenthal felt. Then an Alzheimer’s support group made her realize that she was indeed shouldering the care for her mother, Lucille Mendoza Rosenthal, whose respiratory disease led to her death in November 2005, and her father, Eugene Rosenthal, who died of advanced Alzheimer’s five months later.
She modified her job to give her more flexibility to grab her laptop and cell phone and fly from New York to Los Angeles. But she still did not define herself as a caregiver.
“When I finally did, it helped me understand the stress, the tremendous responsibility I had taken on,” Rosenthal recalls. “It made me see my role and my reality.”
Hiddur’s Friedman jokes there should be eldercare chaplains on all planes between Northeastern cities and Florida retirement havens; half the passengers seem to be traveling to solve another problem for their moms.
“There are such hard choices,” she observes. “Do you rush to Florida to see mom—even though that means not being with your partner or your job up north or missing your child’s first day of kindergarten?”
Of course, it’s easier when the caregiver is appreciated; those moments when, as Marcia Stein puts it, the sun came through the clouds.
“She was not the kind of woman who passed out compliments or hugs,” Stein recalls. “But she was so grateful, she’d say, ‘I know what you are doing. I appreciate it.’ There is something very healing about seeing a parent off in the style they want. You at least feel you did what you could, you did what they wanted. And that’s something you carry around with you for the rest of your life.”
Joanne Kenen, who lives in Bethesda, Maryland, was a Kaiser Family Foundation media fellow reporting on aging and end-of-life care.
Caring for Elderly Survivors
For Holocaust survivors, old age can hurl them back into a place of fear, grief and catastrophe. “It’s normal to be looking back and making sense of your life, to ask ‘Where am I going, what have I done?’ And they do not have good things to look back on,” says Paula Davis, a social worker at Toronto’s Baycrest Centre for Geriatric Care and the coauthor of “Caring for Aging Survivors of the Holocaust: A Practice Manual” (www.baycrest.org).
Caregivers—spouses or adult children—have few guideposts. If they grew up without grandparents, cousins, aunts and uncles, they may have never experienced bereavement before or seen old age up close.
For survivors who suffer dementia and confusion—and not all do—emotions from the past may seep into the present. Coping mechanisms may crumble. Even those without dementia can find that their English, the last of five or six languages they learned, deteriorates with age, which can lead to frustration and sometimes incorrect neurological assessments.
Dislocation and loss of autonomy that come with entering a nursing home can be especially challenging. “The last time they were in an institution, it was dedicated to their annihilation,” says Rabbi Dayle Friedman, director of Hiddur: The Center for Aging and Judaism at the Reconstructionist Rabbinical College near Philadelphia.
Relatives should make sure that the staff has some understanding, or preferably experience, with survivors. A nursing home aide, for instance, needs to think twice before announcing to a new resident, “It’s time for your shower.” Most survivors have learned to distinguish between physician-healers and Nazi physician-monsters, but for some a doctor’s exam can still be traumatic.
Hoarding or refusing to disclose assets, which may be necessary to obtain Medicaid coverage, is common among the generation that endured the Depression and World War II, but it is very pronounced among survivors. They may hide earrings in the sugar bowl, for example, in case they have to flee before the next Kristallnacht.
As death nears, reactions vary widely. Survivors who have withheld their stories may decide to finally tell them. “Be open to people’s stories. There’s a tremendous history of loss,” says Susan Conceicao, a social worker at the Mollie and Jack Zicklin Jewish Hospice Residence in Riverdale, New York.
Talking about advanced directives, the kind of end-of-life care survivors prefer, can be excruciating. They may not want to discuss funeral wishes or they may become hyperfocused on who will handle their body, says Rabbi Mark Popovksy, a chaplain at New York-Presbyterian Hospital and author of the pamphlet “Jewish Ritual, Reality and Response at the End of Life: A Guide to Caring for Jewish Patients and Families.” Ruth Kershner, a social worker in Maryland, remembers one religiously observant gentleman torn between the Jewish prohibition on cremation and a desire to turn to ash to rejoin his parents.
“I see less fighting death among survivors, more acceptance,” Kershner says. “For some it’s a relief, a chance to reconnect with their lost loved ones. They feel they’ve been dead all along, that the Holocaust was the end of their lives, too. It ends the pain and suffering that they’ve been dealing with every single day of their lives.”