When my son, my first child, was two weeks old, I took him for his first walk in his little collapsible carriage. As soon as I started to move along the sidewalk, my hands on the bar of the buggy, a rush of familiar sensation came over me; I knew in my body, in my hands, how this all felt. I had pushed my baby-sized doll along concrete sidewalks in a carriage not unlike Benjamin’s about 20 years earlier. The physical sensation was so much the same, in fact, that I was actually startled to hear a cry coming from this carriage—my doll had never uttered a peep! What a paradigm for how some early experiences can prepare us (though incompletely) for adult roles. As girls, many of us played with dolls, rehearsing the role of nurturing the young. Even my mother pushed baby dolls in miniature carriages (that’s her in the photo, circa 1915).
But nobody ever provided us with Grandma dolls so that we could practice pushing them around in toy wheelchairs. We don’t have much opportunity to rehearse the role of caring for our elders. When I first put my hands on the handles of my mother’s wheelchair, ten years ago, and began pushing her around her nursing home, the sensation was frighteningly new, not at all familiar.
Eldercare responsibilities often spring upon us suddenly: for the direct care of aging relatives, making decisions with them and for them, being their advocates in the doctor’s office, the nursing home or the legislature. One minute you’re just an adult daughter. Then Mom falls and breaks her hip, and suddenly you’re a caregiver.
What happens in the lives of women who wake up one day to find themselves thrust into these new roles? Whether daughter or wife, daughter-in-law, granddaughter or friend, complex negotiations follow: with siblings over a parent’s care; with grown, midlife children over how to care for an aging or ailing spouse; with faceless telephone contacts called on to help you through the peculiar agonies of long-distance caregiving, one of the fallouts of living in a highly mobile society where almost no one lives in the town where she grew up.
Aging affects women much more so than men—both as the elderly and as their caregivers. Old age, we’re told, is a country of women.
“I Don’t Want to Be a Burden,” is our working title for LILITH’s year-long focus on issues in caregiving for Jewish women. We plan to explore the impact of shifting emotional, financial and physical costs of caregiving in a population that is graying faster than any other in the United States. We’re interested in going beyond these facts to examine the psychological and other subtle issues that come into play when family members, women especially, begin to self-identify as caregivers, often in unanticipated ways and at unpredictable moments. That’s why, in launching the project in this issue, we bring you two distinct narratives: One is from a writer who traveled across the world every summer to help care for her nonagenarian father in Israel and now painfully computes the emotional toll of these Herculean efforts. The other comes from a European-born psychotherapist in upstate New York who evolved from caregiver to her ailing husband when she was in her mid-60s to a self-described “old” woman of 75 worrying about how her adult children will care for her.
Over the next several months, we will expand LILITH’s Talent Bank, directed by Managing Editor Naomi Danis, to include experts on all areas of senior care, including policy makers, service providers, mental health professionals and educators creating “caregiver education” programs. We’ll follow new legislative initiatives for supporting family or “informal” caregivers. And we’ll check in with programs being developed in synagogues and schools to reach out to the whole cohort of healthy seniors who have until now been largely ignored by the organized Jewish community. Most Jewish marketing has been geared to drawing in the young: “young professionals,” “young families.” Can we expect synagogues and other institutions to focus on the “gray” market, both as a group in need of services and as potential volunteers and funders of Jewish activities?
Spotlighting eldercare issues fits into LILITH’s overall mission to uncover not only the factual underpinnings of important social issues but their personal components as well. We will amplify not only the voices of the caregivers, but of older women themselves. With luck, we’ll all be older someday. And will those responsible for our care when we ourselves are old remember whether we like bingo and basket weaving or Scrabble and Scriabin (or all four)? Now is the time to assess what kind of care we’d like to get ourselves, and the communication we’d like to have with our own caregivers, and then transfer some of that knowledge, empathically, into our relationships with older people today.
Some things to consider:
- People are living longer now than ever before; fully one-fifth of the Jewish population in the United States is now over 60, the majority of them women. This large population of older adults is unprecedented, and thus there are no real role models for how to meet complex intergenerational needs even as the caregivers themselves begin to feel their age. Caregivers need models, and they need guidance; we’ve all been children before, but none of us has ever been any older than we are today.
- Middle-aged adults live farther away from their birth families than ever before. And Jewish adults tend to live much farther away from their own families of origin than members of many other ethnic groups in America (though they do have higher phone bills).
- Because of these great distances, children often have little opportunity to interact with their own aging relatives. Just as adult children need help to prepare for the emotional and physical tasks of caring for parents, youngsters need both instruction and models for how to relate across the generations.
- What if you’re taking care of your partner? How can caregivers respond to the excruciating emotional and physical toll when one spouse is well and strong and the other is in need of chronic care? The sometimes harrowing stories of women who cover up for a spouse who is deteriorating constitute another chapter in the secret afflictions of those who are caregivers, because while there seems to be no shame in assisting an aging parent, spousal care triggers its own set of emotional problems.
Boomers (many now in their 50s themselves) constitute a generation that, according to one large poll, believes they can be successful at anything they set out to do. But there is no instruction manual for negotiating these concerns around intimate care. This is a generation that planned carefully for college— for themselves and their children—but made no plans for how to assume responsibilities for the older generation. Yet Boomers too are fated to become part of what The New York Times names “the silent volunteer army” who care for sick and aging friends and relatives at home. Perhaps because of the huge numbers of these Baby Boomers, Congress is now considering legislation to give tax credits to people providing this care.
LILITH has been awarded a grant by the Grotta Foundation for Senior Care to examine the experiences and the implications of the role of “informal” caregiver. Starting with the pages of this issue, watch for original analysis of the social issues and first-person accounts (those teachable life stories). And so that others can learn from what you have gone through, please, if you’ve had experience as caregiver to a friend or relative of an older person, tell us what you know—either from first-hand experience in making choices about someone’s care, or from discovering programs that work in your own community.
“Chance favors the prepared mind,” declared Louis Pasteur. By thinking through what will likely be a part of every family’s experience now that fewer and fewer people are placing the elderly into nursing homes, the middle generation, sandwiched, will have an opportunity to make necessary arrangements financially, physically, professionally and certainly emotionally before assuming caregiving responsibilities. This issue of LILITH is a piece of necessary equipment for that caregiver’s survival kit.