Our Children, Our Caregivers?

In a Huffington Post blog Ann Brenoff asked, “Is childlessness felt more when you hit middle age?” Her premise was that many childless people (i.e., women) worry that by having chosen not to have children in their 20s and 30s, they closed off the possibility of having a caregiver in their old age. Earlier Jane Gross, in a post on the New York Times “New Old Age” blog, had described the situation, rather more dramatically, as “Single, Childless and ‘Downright Terrified.’”

When I first read Brenoff’s blog, I laughed at the implication that those of us who had children in our 20s and 30s considered them a form of long-term care insurance. We were struggling with parenthood, schools, bills, jobs, and, on the national front, Vietnam, Watergate, and civil rights. Aging was the least of our worries. And to think that our kids–who were just learning to take care of themselves–would someday take care of us was unimaginable.

I understand the plight of older people who lack close family ties and loving relationships. But adult children’s roles in older persons’ lives vary by necessity or choice. Some children have close, meaningful bonds with their parents. Some have become estranged, because of abuse, neglect, or real or perceived wrongs. Some are only intermittently involved.

Becoming a parent’s caregiver is not a legal obligation.  Some states have old laws requiring financial support from adult children but these are generally deemed unenforceable. (A recent Pennsylvania court case may signal a new trend, however. An appeals court ruled that a nursing home could pursue a son–or any relative it chose–to pay a woman’s unpaid $93,000 bill incurred while she waited for Medicaid approval.  Even Singapore’s filial support law requires needy parents to sue their children in a local court, which rarely happens.

Even without legal obligations, family members, mostly adult children, do take on enormous caregiving responsibilities. At least 80 percent of long-term care is provided by an estimated 42 million unpaid family members. Only 1.5 million to 1.8 million people, or about 4 percent of the population over 65, live in nursing homes at any given time. Even then, family members play an important role monitoring care and providing emotional support.

The ethical questions, not surprisingly, are more complex. What ought we to expect from our grown children? How much of their family life, financial resources, employment opportunities, and–perhaps most precious–time should they devote to us? And when? When we ask? When they realize we won’t ask and decide to step in? Or, as typically happens, only when there’s a crisis–a fall, a stroke, a driving mishap? When does autonomy–a refusal to give up the car keys or consider a safer residence–become just plain stubbornness?

If for whatever reason children will not or cannot provide all the long-term care (or in today’s jargon, long-term supports and services), where can we turn for help? And assuming our children want to and are able to provide some level of care, where can they turn for help? Friends? Communities? The health care system? Government?

Let’s start with what we can do for ourselves, aside from having insurance or savings. Even if we have signed health care proxies and advance directives (by no means a given), how many older people have talked with their children about the years that come long before-end-of-life questions? How can responsibilities be divided equitably among children with different circumstances? Frank discussions before a crisis would by no means assure that future decisions would be unanimous but would at least surface the hidden conflicts that can sabotage the best plans.

Friends can play an important role in sharing social activities. But friends of the same age cannot be counted on to provide the constant personal assistance that people with chronic physical or cognitive conditions require. Communities are also sources of support through service agencies, religious institutions, transportation, meals, and volunteer visits. But here, too, there are limits, and the older and sicker one gets, the less the community can provide.

That leaves us with the health care system and the government. Those are both topics for another day, but based on my 17 years as my late husband’s caregiver, I am not optimistic. The health care system typically fails to recognize the critical role of family caregivers. And while it is appropriate for policymakers to look first to families to provide care, too often they look only to families. Ironically, when I raise these issues with professional audiences, I am often quickly asked, “But what about people who don’t have families?” This diversionary tactic pits childless against child-rich, and no one is better off.

Carol Levine, 77, is director of the Families and Health Care Project of the United Hospital Fund and a Hastings Center Fellow.