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Caregivers: The Invisible Patient

Caring for the Caregiver
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Making the Connection continued...

"For the first 5 years she was medically fragile and I did nothing but care for Stephanie," says Agaratus. "I was very isolated socially."

Taking care of Stephanie meant that Agaratus was frequently on unpaid leave from her job, but "we didn't qualify for anything, any programs," she says. Physically, the stress caused Agaratus to lose hair, hair that she says still hasn't come back. Economically, she and her husband found themselves mired in debt, almost to the point of losing their home.

'I Am a Caregiver'

Eventually she heard about Mintz' group and attended a meeting in Connecticut. "I heard Suzanne talking about how you have this extra role, you are not just a wife. Other people aren't getting 9-year-olds out of bed and changing bed sheets because they are wet, or diapering a 5-year-old. I thought, 'Oh, my God, that is what I am. I am a caregiver.'

"Then she said that what is important is to take care of yourself because you are not going to do anyone any good if you get run down. It just clicked with me, and I started spreading the word about being a caregiver and about how caregivers need to take care of themselves," says Agaratus.

That type of support is vital to the well-being of caregivers, says Joanne Schwartzberg, MD, a gernontologist who is the American Medical Association's point person on caregiver health.

"The social isolation faced by caregivers is undeniable," says Schwartzberg, and it often extends so far that the caregiver become "invisible even to physicians and others who are providing medical care for the patient." Taken together, that isolation and invisibility often put the caregivers' own health in jeopardy, leading to increased risk of illness and death.

The AMA now considers caregiver health to be a major public health concern and has launched a campaign to alert physicians to the problem, she says. As part of routine office visits, the AMA wants physicians to ask every adult patient: "Do you have responsibility for caregiving?" If the answer is yes, the patient would then be asked to complete a special questionnaire that is designed to assess health problems, such as back pain, anxiety, depression, and sleeplessness.

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