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 in 1974.
"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 says.
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 survive.
"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.