Caregivers: The Invisible Patient
Caring for the Caregiver
Different Stories, Same Emotions continued...
Mintz' husband has a slowly progressing type of MS, so he
didn't need immediate caregiving, but "there was an immediate period of
grieving that followed the diagnosis," says Mintz. "We were thrown for
an emotional loop."
In ensuing years, Mintz and her husband separated twice before
finally getting "back together in what is now an extremely solid
marriage," Mintz says. Ultimately, her husband's illness has actually
helped cement that closeness, Mintz feels.
As her husband's MS worsened, Mintz found herself called on
more and more to take on caregiving responsibilities. By the early 1990s she
had been through a "couple of bouts of clinical depression" that she
thinks were triggered by worries about her husband's health and concerns about
her own ability to cope. At the same time, a friend was struggling to serve as
caregiver for an ailing parent.
"Although our circumstances were different, our emotions
were the same," says Mintz. That realization led the two friends to discuss
the need for an organization to help others in the same boat. In 1993 Mintz
founded the National Family Caregivers Association to provide a nationwide
support network for caregivers.
Making the Connection
Soon after Lauren Agaratus of Mercerville, N.J., gave birth to
her daughter, Stephanie, she learned the girl has a severe kidney disease.
Agaratus and her husband were told their daughter was not expected to
"She just turned 9 last week, and we still don't know what
the future holds," Agaratus tells WebMD. But the past was marked by
round-the-clock, intense caregiving responsibilities for Agaratus.
"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