Caregivers: The Invisible Patient
Caring for the Caregiver
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
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
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.