BOSTON — Until nine years ago, Carol Levine identified herself by three roles: wife, mother, medical ethicist. Then her husband was severely injured in an automobile accident. Ever since, she has been caring for him at home, adding a fourth role - family caregiver.
As one of the 25 million Americans who minister to the needs of frail, ill, or disabled relatives, Ms. Levine quickly discovered that this essential work is fraught with isolation, inadequate training, and insufficient help from social workers and health-care professionals. Too often, she says, caregivers are simply encouraged to focus on "coping - learning how to live with an intolerable situation by changing one's own attitude and expectations."
Last Thursday, Levine shared her perspectives with an important audience - members of the US Senate Select Committee on Aging. Testifying in an all-day hearing on family caregiving - the first full hearing on the subject - she and other specialists in the field made urgent appeals for more visibility, more support, and more respect for this unpaid role.
"Most people just feel they have to tough it out," Levine explains. "Nobody really comes along and says, 'Let's talk about what would make it easier for you.' It's so difficult to get that kind of concern, or even permission to think about yourself."
Levine, now director of the families and health care project at the United Hospital Fund in New York, a research and philanthropic organization, calls family caregivers "everyday heroes." Yet heroism or martyrdom, she insists, "is not an ethical or practical standard for public policy or health-care practice."
In focus groups and conversations with caregivers, she hears recurring themes. One challenge is economic. Some middle-class families who thought they had comprehensive health insurance are being impoverished by caregiving, in part because much of what they need at home falls under the unreimbursable category of "custodial care."
At the same time, cost-cutting efforts within health-care systems continue to shift responsibilities to families in what Levine calls "unprecedented ways."
Another challenge involves the impact of caregiving on other family members. Often, Levine notes, children are the ones neglected - "not willfully, but because the demands of caregiving become so overwhelming."
Caregiving specialists emphasize that no single solution exists, since every family's situation is different. They see a need for an array of services. More respite care, for instance, would give caregivers well-deserved time off. More counseling and referral services would also help. So would the ability to hold insurers to a high standard of performance and accountability.
Levine also wants caregiving to be part of training and continuing education for those studying medicine, nursing, social work, and even theology.
"There is a kind of vacuum in the response of the faith communities to caregiving," she says, noting that in her conversations with caregivers, "no one mentioned organized religious institutions or clergy as a source of solace or assistance."
Again and again, when Levine asks caregivers what they want, they tell her their modest requests: "Someone to talk to who understands what I'm going through." "Someone to call when I have questions." "A day off."
As these private wish lists affect more and more families, they can no longer be avoided as a public-policy issue. The Senate hearing last week represents an encouraging first step in giving voice to the unseen "everyday heroes" who, out of necessity, love, and compassion, are performing the most selfless tasks for others and who, in return, deserve a measure of compassion themselves.