Newspaper article The Christian Science Monitor

Family Caregivers - 'Everyday Heroes' Need Help

Newspaper article The Christian Science Monitor

Family Caregivers - 'Everyday Heroes' Need Help

Article excerpt

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. …

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