Baby boomers are folks who want to do everything right. So do Jewish women. And in middle age, the same desire to do it right extends into a new arena—taking care of elders. Because this generation is so sizeable, boomers’ concerns for an aging parent or a disabled spouse have spurred a whole spate of innovative legislation, research, community programs and courses.
Whereas in past decades the focus was on medical interventions that made it possible for the elderly to live longer, and for people disabled by accidents or wasting disease to survive, now the spotlight is on the needs of the caregivers themselves. The emerging issues fall into two categories: structural changes, such as federally mandated unpaid leave from work to take care of a family member, and subtler attitudinal or emotional concerns, such as the cross-cultural tensions between a Jewish family’s traditions and those of a non-Jewish hired home-care aide.
First, a quick tour of new developments to support caregiving:
- “Informal” or family caregivers represent a huge economic resource—by some estimates more than $200 million dollars a year in unpaid labor. Understanding this, the federal Family Medical Leave Act, for example, orders companies with 50 or more employees to grant workers up to 12 weeks of unpaid leave to care for a seriously ill parent, spouse or child. Smaller firms can use the FMLA guidelines to provide support for individual employees. According to the Family Caregiver Alliance, leave for employed caregivers improves job performance, decreases lateness and employee turnover, and increases job satisfaction.
- Two recent studies acknowledge the stress that family caregivers endure. One, in the Journal of the American Medical Association, presents data that older spouses in the caregiver role are 63% more likely to die early than people without these responsibilities. Other studies have demonstrated that caregivers suffer depression, but the current research shows that the emotional, financial and physical stresses of caregiving “can have a deadly impact.” On the positive side, a study being conducted by the State of New Jersey is quantifying the benefits of adult day-care centers for caregivers as well as for the clients themselves. According to Rick Greene, program manager for Wellness and Family Support in the New Jersey Department of Health and Senior Services, caregivers who have access to such facilities are less likely to need medical care or sick leave themselves.
- New Jersey, with one of the largest senior citizen populations in the nation, has a large cohort of Jewish seniors, some left behind in the old neighborhoods that Philip Roth has immortalized, and some brought from the Bronx and Brooklyn by adult children living in the New Jersey suburbs. A boon to caregivers has been a statewide project to provide assessments, care planning, referrals and other crucial information with one telephone call to NJ EASE (Easy Access Single Entry) at 1-877-222-3737. A phone interview about your “case” will then connect you to the state’s elder care resources and to local agencies, reports Len Fishman, former Commissioner of Health and Senior Services. The state makes need-based payments of up to $3000 per year to people caring for Alzheimer’s patients at home, and uses some revenues from tobacco settlements to fund courses in “caregiver education,” Rick Greene reports. The state supports “alternative family care,” a parallel to foster care for seniors, and has developed therapy groups for individuals with early-stage Alzheimer’s disease as they try to come to terms with its losses.
- Long-distance caregiving is one hallmark of Jewish families. Jews live at a greater distance from their birth families than other groups, and a comparison of New York’s Jewish and Italian populations confirms this. Telephone contact is greater among Jews, daily visits fewer. One consequence, says David Stern, Executive Vice President of the Jewish Association of Services for the Aged in New York, is that Jewish grandparents provide relatively little hands-on care of grandchildren, so they may be reluctant to call upon their grown children to reciprocate such care. Contact and concern exist between the generations, but the expectation of actual physical caregiving may not. For the families of seniors who do not live close to their children, the Jewish Family Service of Metrowest has created a fee-for-service program whereby the agency becomes the care manager, finding home aides, equipment, counseling, and other services.
- Responding to the needs of caregivers for Alzheimer’s patients, the NYU Alzheimer’s Disease Center (212-263-5728) is about to publish its advice and resources. Watch for this new handbook on how to get the best medical care for your relative with Alzheimer’s Disease by Mary Mittelman, DrPH, Cynthia Epstein, ACSW, and others. “You have to be prepared to go beyond your comfort zone in advocacy,” asserts Epstein. “You may not have been a person who speaks up, but now you have to assert yourself. Alzheimer’s patients cannot speak on their own behalf. Without the caregiver, they are without a translator. They are at greater risk than other [hospitalized] patients their age for a bad outcome.”
- Hospital discharge is acknowledged by all the experts in caregiving as a crisis time, for which family caregivers and health care aides are often inadequately prepared. A pilot program at Hackensack University Hospital in New Jersey sends a trained geriatric nurse to follow up the hospital stay with home visits, and answers questions by phone after discharge. We all want to appear as smart and competent as possible, and women especially are socialized to be good girls and not ask too many questions. Susan Friedman, of the Grotta Foundation for Senior Care, says, “You’ve got to ask, before you leave the hospital: ‘Who is my care partner? Who will help me with this transition? What’s a hotline number I can call?'”
What’s different for us?
One stressor for caregivers is the pull between work and caregiving duties. Since Jewish women are heavily represented in the workforce, especially in business and the professions where long hours are the norm, and are often highly invested in their work as a career, they are especially frayed by demands of caring for—or arranging care for—an aging relative. Unlike caring for your children, which abates as the children grow older, eldercare responsibilities are likely to increase over time.
“Acknowledging what is happening to your life” is one of the most difficult aspects of being a caregiver, says Carol Levine, director of the United Hospital Fund’s Families and Health Care Project and editor of the U.H.F.’s just published anthology Always on Call: When Illness Turns Families into Caregivers. For ten years Levine has also been the caregiver for her husband, quadriplegic after an automobile accident. “The grieving starts very early, for the person who is no longer the same, for the relationship that is no longer the same, and for yourself….Being Jewish means challenging things, asking ‘Why is this happening?’—not accepting the world as it is, not thinking that it is God’s will that things be this way. I can be very angry at God—He or She—and I think this attitude can be helpful to a caregiver, to call on the Jewish tradition of questioning.”
Levine is very frank about the often undisclosed emotional needs of caregivers, including being able to say “I can’t do it all.” “You need permission not to put everything in your life on hold while you become a caregiver. [As a Jewish woman] you are raised to succeed,” she adds, “and all of a sudden you can’t be the successful person you want to be in this new role. It’s quite humbling. You’re so successful and yet so helpless to get something done in this health care system.”
Levine also speaks openly about potential conflicts between families and paid aides, and suggests that improving training and benefits for home care workers is one way to keep this care consistent. The United Hospital Fund has published guidelines and a suggested contract to use when hiring a home aide (“very different from hiring a housekeeper,” cautions Levine).
Cultural differences come into play as well. Susan Friedman notes that health care aides from the West Indies, for example, may be very kind towards the elder but disparaging of the employed adult daughter who hires help to do what in Island culture would have been done by a daughter herself. When these conflicts surface, they can trigger additional feelings of guilt and failure in the already burdened daughter. Family care managers need information and assistance in ameliorating these cross-cultural differences, which may play out at home or in institutional settings.
Ignorance of what elderly Jews might have experienced before coming to America plays a role in some misunderstandings. Adele Goldberg of the The Brookdale Center on Aging at Hunter College describes how her mother, a Holocaust survivor recently admitted to hospital, was assumed by nurses to be a diabetic who’d had toe amputations. No, said Goldberg, my mother’s toes froze off in Siberia. The Brookdale Center (212-481-4426) has developed training to sensitize home health aides and family caregivers to some of their racial and ethnic differences, and offers a workshop on “Cultural sensitivity: training and supervision of non-Jewish professional caregivers.”
Over the past several months LILITH has published several articles about issues Jewish women face as we are (too often) thrust into the role of caregiver. You can see some of these reports and first-person accounts on our website (www.lilithmag.com), or order back issues of the magazine from 1-888-2-LILITH. And if you have professional expertise in any area of eldercare, please contact Naomi Danis at LILITH to become part of our Jewish Women’s Talent Bank.
When LILITH readers were surveyed about their own responsibilities for eldercare, almost half the respondents said they are now directly responsible for an elderly family member or friend or are affected by other caregiving responsibilities. (One 23-year-old, who looks in on her 88-year old grandmother at least every other day says, “I don’t count myself the primary care, but I am there a lot.”) Of the other 50% of LILITH readers – those who say they’re not caring for someone right now – some had been active caregivers before a parent’s death, and others expressed their looming anxieties by writing “not yet” on the survey form. Here are some ways to prepare:
Family Caregiver Alliance publishes a very informative newsletter, with interviews and reports on caregiving research, and offers an online caregiver support group.
(415) 534-3388; www.caregiver.org
690 Market St., San Francisco CA 94104
Jewish Vocational Service has a free course to certify older home health aides, and includes “specialized training in sensitivity to the needs of the family caregiver.”
National Alliance for Caregiving
(301) 718-9444; www.caregiving.og
This organization is developing a national resource center in cyberspace which will include a comprehensive listing of websites and printed material.
National Family Caregivers Association
(301) 942-6430; www.nfcacares.org
United Hospital Fund
Donna Wagner PhD, Director of the Gerontology Program at Towson University, adds the following commercial but useful websites: thirdage.com; webofcare.com; extendedcare.com
Reporting on eldercare issues in Lilith is made possible by a grant from the Grotta Foundation for Senior Care.