Carol Levine: Family Caregiving Myths, Past and Present

Release Date: 04.05.2012

The following commentary, written by Carol Levine, director of the Families and Health Care Project, was originally published on February 21, 2012, by Vitamin W. It is re-posted here with permission.


Nostalgia—a sentimental view of the past—has a potent appeal in politics and culture.  In the good old days, we hear, children respected their elders, father knew best, and women were, well, everything that women today are not.

I’ve worked professionally in the field of family caregiving for 15 years, and for 17 years I was my late, disabled husband’s caregiver.  Over the years I have learned that nostalgia is often a biased view of a past that never existed.  I frequently encounter statements like “Families used to take care of Grandma and didn’t abandon her to a nursing home,” or “Families didn’t need the government to help.”

When I read Henrik Hartog’s essay, “Bargaining for a Child’s Love” in The New York Times, presenting a more realistic view of family relationships in the years before Social Security, especially when an inheritance was at stake, I was pleased.  But then Hartog wrote that today middle-class families no longer have to do the hard and dirty work “cleaning bedsheets, helping a person into a bathtub, changing a diaper.”   This is simply not the case. As I recently commented, according to the 2009 National Alliance for Caregiving national survey, this is exactly what at least 21 percent of the country’s 48 million caregivers do, as well as managing complex medications, arranging transportation, financial and legal affairs, and countless other tasks.Medicare does not pay for this kind of “custodial care.”

But countering Hartog’s rosy view is only a part of what needs to be done to assist the estimated 48 million family caregivers in the U.S.  The only two current federal programs—the National Family Caregiver Support Program and the Lifespan Respite Program—are both shockingly underfunded.  State programs to provide counseling and support for family caregivers, as well as services for older adults, are being slashed.  California, for example, has been the leader in these areas, but is now facing the elimination of Caregiver Resource Centers and other cuts.  Canada’s caregivers are also stressed, but at least the issue is part of a national agenda.

 Nearly all the services that are available to family caregivers, and that are now vulnerable to proposed budget cuts, fall into the psychosocial realm—counseling, referrals, support groups. These are important services to maintain caregivers’ well-being and ability to continue in the role. But in the health care world, where I work, family caregivers have been invisible—that is, until the day when a patient is discharged from a hospital or nursing home rehab program.  Then the family member nearest to hand, who may or may not be the one providing or managing care at home, is handed a sheaf of papers and prescriptions, given a quick run-through on operating feeding tubes and other machinery, and basically sent out into the world to learn on the job how to be a nurse.

These transitions—from hospital to home or nursing home rehab program—are now the focus of policymakers’ attention because they too often result in avoidable and costly readmissions.  Medicare will soon start penalizing hospitals with unacceptable levels of readmission for three conditions—congestive heart failure, pneumonia, and heart attack—with more conditions to be added.  To avoid financial penalties, hospitals are implementing programs to improve transitions. Typically they do not include specific attention to the family caregivers, who are often the main source of continuity within the health care system.

Changing that reality is the goal of the United Hospital Fund’s Next Step in Care campaign.  We are working to build partnerships between family caregivers and health care providers, especially around transitions.  The main vehicle is a series of free, user-friendly guides on our website—in English, Spanish, Chinese, and Russian.

Not surprisingly, we find that changing culture—both the rosy view that “families have always done it”—and the dark view—“families are too overwhelmed or dysfunctional to do it”—prevent honest discussions, careful planning, and follow-up.  Family members must become advocates for their chronically or seriously ill relatives, partners, or friends.  Even harder, they must become advocates for themselves.

Carol Levine is director of the Families and Health Care Project at the United Hospital Fund in New York City and of the Next Step in Care website.