Caregivers: The Invisible Patient
Caring for the Caregiver
Different Stories, Same Emotions
A desire to help other caregivers is what led Suzanne Mintz to
organize the National Family Caregivers Association. Mintz learned firsthand
about being a caregiver when her husband was diagnosed with multiple sclerosis
"That's when our lives changed," says Mintz. At the
time, she was 28 and her husband, Steven, was 31.They were married in 1967 and
were parents of a son born in 1969. "That's not the time of life when you
expect to hear that your spouse has an incurable neurological disease," she
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.