Suzanne Mintz

Standing up for Caregivers

By Lyn Mettler

Caregiving has never come easy to Suzanne Mintz. During the last 30 years since her husband, Steven, was diagnosed with multiple sclerosis (MS), she has suffered many bouts with depression and marital difficulties, including several separations from her husband.

That's why she founded the National Family Caregivers Association (NFCA) in 1993 with her friend and fellow caregiver, Cindy Fowler. Both women wanted to help others struggling with the day-to-day issues of being a family caregiver. Today, the NFCA has become the nation's leading grassroots caregiver constituency organization, and, according to Mintz, "the only one that reaches across the life span and the boundaries of differing diagnoses and relationships to address the common issues of all family caregivers."

Not long after Mintz, then 21, and her husband, then 23, learned of his devastating diagnosis of MS, Mintz also heard that couples with one partner who has MS have a high divorce rate. While she and her husband did not succumb to that statistic, they did navigate many rough years. Part of their struggle had to do with the fact that both Mintz and her husband had different ways of dealing with the stress and emotions that came with having to accept that her husband had MS.

"The biggest challenge initially was acknowledging that Steven's diagnosis of MS was our diagnosis of MS – that we both were affected by it, but in different ways, and that we reacted to it differently as well," says Mintz, who is also the author of Love, Honor & Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving. Mintz found that while Steven tended to turn inward for support, she instead needed to reach out to others for support.