Our Children, Our Caregivers?

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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.

9 Responses to “Our Children, Our Caregivers?”

  1. Rachel

    One of my greatest blessings and trial has been to care for my mother. I was 30 years old with 4 young children. Now I am 41, have two children out of school, one about to graduate, and the last one is a sophomore. It’s been a long and difficult journey at times, but I don’t regret the example our children have seen. They’ve seen the tears of sorrow and joy. My heart goes out to those who have no family who will need to navigate healthcare and nursing homes alone.

    • Rock

      Thanks for the new stuff you have exposed in your blog post. One thing I would like to reply to is that FSBO human reploitnshias are built as time passes. By releasing yourself to owners the first few days their FSBO is announced, before the masses begin calling on Mon, you make a good link. By mailing them resources, educational materials, free reviews, and forms, you become a strong ally. If you take a personal affinity for them as well as their problem, you build a solid connection that, on most occasions, pays off in the event the owners decide to go with an adviser they know and also trust preferably you.

  2. Eric Reines

    Dear Carol Levine: Direct care is undervalued in this country, whether done by family or strangers. Does either major political party get this?
    In Massachusetts we do have programs that contract with the government to pay family members to care for their loved ones, or for foster care for elders. These programs have appropriate monitoring to ensure that good care is being provided. I don’t know if they pay a living wage, though.
    The pendulum of ethical opinion hopefully is swinging away from the primacy of autonomy toward a recognition of the importance of family and community in decision making and responsibility.
    More power to you!
    –Eric

  3. Jane gross

    Carol has from Day One been my wisest teacher as I tried to educate myself about family caregiving, especially the role of adult children in the lives of our aged parents. She has never hesitated to challenge my amateur observations, my persistent naïveté about what is possible politically and practically, and I have always welcomed those incisive challenges. While I appreciate her citing my New Old Age post about the fears of those of us aging without the love, attention and advocacy of children, I’d like to point out that the perhaps over-wrought, hyperbolic headline, “Single, Childless and Downright Terrified,” was a quotation from a reader, not my own locution. And that the post had an extraordinary 400-plus comments, suggesting how widespread this fear is. While I have never meant to suggest anyone procreates, or adopts, in order to be cared for in old age, I do believe nobody would have attended to my mother’s needs with the diligence that my brother and I did.. Also, while I doubt many parents want their children to take on this heavy burden, I know as a daughter who did that iit was an unanticipated gift, an opportunity to know and love my mother as never before, and vice versa. I fail to see how distinguishing between those of us with children and those without pits us against each other. Our circumstances are different but our concern the same: A broken – arguably non-existent – system of long term care. That should alarm all of us.

  4. Carol Levine

    Thanks for the comments. Rachel, I’m sure your mother and your children have benefited greatly from your experience but not every family is able to do this for all the reasons I outlined.

    Eric, Several states have programs that allow low-income people to hire and fire their own home care workers, which may include family members (but usually not spouses). The pay is low and there are no benefits and no backup, but for many families it is an income support. I think the foster care program in MA does pay more generously but certainly not a substitute for even a moderately well-paying job. And there are all kinds of rules and regulations. It does seem to work in some situations.

    Jane, We have had this conversation for years so I won’t say anything except to explain that the people who say, “But what about those who don’t have any family?” use it as an excuse to ignore family caregivers. They believe that if someone has some semblance of family they will get by just fine. All the resources should go to people without family, and of course, that doesn’t happen either. It’s just another way of doing nothing and helping no one.

  5. alice herb, JD, LL.M

    Carol,
    After many years of professional and personal experience, I firmly believe that in virtually every family there is an “it” – the person who somehow always takes over the caregiving responsibility. In my family, although I have a brother, taking care of my parents and then my mother was always overwhelmingly my job.
    Until here death, my mother lived in the same building as I still do and I saw her almost every day. My most pressing issues were her stubbornness in accepting outside help and her denial of her diminishing ability to care for herself. Talking to her about what she would want in an emergency was off the table – she was too afraid to confront her own death. I managed but with difficulty.
    I also supervise the care of a severely disabled cousin, age 77, who lives in a group home. Disabled from birth, my aunt focused on me as the caretaker although my father was still able and there were a number of other cousins who might have served. None of them has taken an iota of interest or care. Fortunately I was able to place her in a safe and caring home but I had to do that shortly after my older son died. Needless to say, it was a gargantuan task to grieve, pay attention to my younger son who was then a freshman in college, work and take care of my cousin. United Cerebral Palsy was enormously helpful and continues to be. Other family members were not.
    On the professional front, in consulting with patients and family in the clinical setting, my experience has been that it is not always the children who step up to the plate nor is it the child who seems the most logical and sometimes no one steps up and the resources are hopelessly meager. There is a lot of work to be done to make the fear of most seniors less real.

  6. Carol Levine

    Alice, I think you’ve made my point. It’s not always the children, and among children, it’s not always the one most “logical” to provide care. But you lived in the same building as your mother, and so it might appear that you were indeed the logical choice. And until very recently being a daughter was almost tantamount to being the logical choice. Professionally we hear mostly about the situations in which there is conflict among siblings or other relatives. I think the vast majority of families do manage to divide up responsibilities,if not absolutely equally, at least satisfactorily. My sister and I never had a single moment of conflict or power plays around the care of our mother, who did her very best to pit us against each other. We knew her too well and refused to play along. We didn’t grow closer to her but we did to each other. That was an unexpected benefit.

  7. Pat Kagan

    I have heard of communities where adults have volunteered time to assist their needy elders by assisting with care, meals, and company, etc. In return, they are credited with “bankable” hours that get repaid when they themselves become elderly and infirm. I don’t know if there are situations where this could work in the
    US. My experience was in South Africa.

    • Lucimario

      Thanks for the new stuff you have exposed in your blog post. One thing I would like to reply to is that FSBO human rehasiontlips are built as time passes. By releasing yourself to owners the first few days their FSBO is announced, before the masses begin calling on Mon, you make a good link. By mailing them resources, educational materials, free reviews, and forms, you become a strong ally. If you take a personal affinity for them as well as their problem, you build a solid connection that, on most occasions, pays off in the event the owners decide to go with an adviser they know and also trust preferably you.