It all started with Monday morning conversations among social worker colleagues, after a weekend of caring for family members. Sharing those frustrations, successes and advice triggered Dr. Joyce O. Beckett’s book, “Lifting Our Voices: The Journeys into Family Caregiving of Professional Social Workers” (Columbia University Press, 2008).
Unique in its exploration of the dual roles of professional social workers who are also family caregivers, the book also has been hailed as the only collection on caregiving in which the majority of contributors are African-American.
The book packs a wealth of information, including some things that surprised Beckett, despite 40 years as a professional social worker who is now professor emerita of the School of Social Work at Virginia Commonwealth University.
Vignettes from the experiences of 10 social workers make it an easy read. “It’s almost like reading a novel,” says Beckett. “People see themselves in the stories.”
The reflections are many and varied -- and sometimes shocking. There’s a story about a child of 6 who had to drive her father’s automobile into their yard because both he and his wife were alcoholics and incapacitated. That child is a woman now, and continues to care for her mother.
In fact, the issue of children as caregivers, an “invisible group,” is one that Beckett hopes will become better understood as it emerges from the shadows. There is a need for support groups for these burdened young people, says Beckett, a need to alert teachers of their situations and involve social workers.
Much of the literature up until now has been about caring for those with dementia; the essays Beckett has assembled spring from situations running the gamut from preschool to retirement. The book also explores simultaneous caregiving to multiple family members and reciprocal and sequential caregiving.
The comprehensive focus illustrates Rosalynn Carter’s observation, which Beckett emphatically quotes during an interview from her Virginia home:
“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Cultural differences emerged
While there are many issues all caregivers encounter, Beckett’s study and research have identified some challenges specific to African-Americans.
Generally, they begin caregiving at an earlier age. Beckett, 64, who describes her heritage as African, American Indian and European, has been caring for some extended family since she was a child.
And African Americans tend to define family in much broader terms than European-Americans who focus more on their nuclear families. African-Americans are much more likely to have “fictive kin,” says Beckett, extending care well beyond their biological family. Her life is full of such kin, including a neighbor while she was living in Philadelphia. No blood relation, “Miss Bernice” became “like a mother to me,” says Beckett who became a caregiver to Miss Bernice while she was ill.
Other characteristics of African-American caregivers are that they are more likely than European-Americans to be men and to need formal resources but less likely to make use of social and medical services.
In the seven out of 10 essays written by African-Americans, Beckett notes, all mentioned race in terms of health-care disparity and social service delivery. One social worker discusses the case of her mother who was alarmed about a lump in her breast. Although a doctor brushed off her concerns, she had undiagnosed cancer.
Studies such as the National Healthcare Disparities Report prepared by the U.S. Department of Health and Human Services have for years detailed the disparity in health-care service and availability between white patients and persons of color. “That was reinforced by the experiences” noted in the essays, says Beckett.
In the essays, spirituality was another factor mentioned by all African-American caregivers and not their white counterparts, Beckett says.
One more difference is the reluctance of African-American caregivers to seek out support groups. For one thing, says Beckett, they are likely to be in the minority in such groups and feel uncomfortable. And there is also the prevailing attitude among African-Americans that family matters be kept in the family.
Beckett hopes the experiences explored in “Lifting Our Voices” will help increase awareness of other caregiving approaches, perhaps opening some closed doors.
Identifying needed changes
One of the most surprising revelations for Beckett in researching and writing the book was the difficulties social workers had working through the system. “Most of them have PhDs, yet all of them came up against barriers and challenges in the social service and medical care systems,” she says. “They were educated, but they were not prepared for that.”
So, is there any hope for the general population if social workers can’t fathom the system?
Yes, indeed, says Beckett, adding that it will depend on changes to address a rapidly growing elderly population as well as the caregivers attending to them.
Social service agencies must become more accommodating, she says. For instance, they should change the assumption that all caregivers are women. Meanwhile, Beckett believes educators should adapt social work and medical school curricula to include mandatory study of care giving and of the elderly. This will ensure that illnesses won’t be dismissed merely as a symptom of age. She has a joke to illustrate her point:
An elderly man walks into the doctor’s office with an aching leg.
“Oh, that’s just due to old age,” says the doctor.
“But, doc,” counters the man. “My other leg is just as old and it doesn’t hurt.”
Another recommendation Beckett offers is to find a way to compensate unpaid caregivers. “They’re providing a service not only to family members but also to the United States,” she says, because Medicare and Medicaid are spared from providing the care reckoned to be worth billions. Beckett suggests a tax credit, similar to provisions in effect in Canada, would be in order.
She predicts the baby boomers will be agents of change. "As we age, baby boomers will be demanding more policy changes,” says Beckett.
Those changes are definitely needed, she says. With only 5 percent of the nation’s elderly in nursing homes, about 66 million Americans are acting as caregivers, according to the National Alliance on Caregivers. And, as Beckett has illustrated with her book, they are not tending just to long-lived parents, but to siblings, children with special needs, and extended families. In many cases, caregiving is a lifelong occupation.