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When Suzanne Mintz’s husband, Steven, was diagnosed with Multiple Sclerosis (MS) in 1974, the two felt the same shock that many young couples facing a new disability do.

“The diagnosis came at a time in our lives that was so unexpected.  When you get married and say ‘In sickness and health,’ you don’t expect it [sickness] to be anything more than a common cold,” she said.

As Steven’s illness progressed quickly, Mintz took on the role of his primary caregiver.  It is a role that she’s held throughout the majority of the last 34 years, and that has allowed her to become a leading figure in caregiving outreach and advocacy.

Mintz is the co-founder and current president of the National Family Caregiver Association (NFCA), a non-profit that provides support, information, and resources to the more than 50 million family caregivers living in America. The organization, founded in 1993, receives an average of 50,000 monthly visitors to its Web site.  

The NFCA’s mission is to empower family caregivers to act on behalf of themselves and their loved ones, and Mintz has used her own personal story to illustrate the ups and downs of family caregiving and the emotional toll it can have. 

At various speaking engagements across the nation, and in her new book, A Family Caregiver Speaks Up, she speaks candidly about the depression and isolation she has experienced as a family caregiver.  Mintz believes that it’s important for family caregivers to recognize their feelings of discontent and voice them.

“If you keep everything inside sooner or later it’s going to boil up and spew out, it could come out in anger, it could come out in depression,” Mintz said.  She adds that when caregivers share their feelings they often gain comfort from learning that others are thinking and feeling the same things as they are. 

In order to help facilitate the process of catharsis, the NFCA has created the National Family Caregiver Story Project, which is a collection of first person accounts written by family caregivers.  The project not only allows family caregivers to unleash their feelings on the page, but also exposes them to those who have experiences similar to their own.

The hope is that these resources will alleviate some of the depression that caregivers experience.  According to Mintz, family caregivers who care for their parents are twice as likely to experience depression as the general population, while those who care for their spouses are six times more likely to suffer from the condition.  Additionally, the emotional stress of caregiving often causes caregivers to age prematurely.

However, despite the tough statistics, Mintz says that “there are definitely rewards to family caregiving.”  She believes that as the population continues to grow older, the need for caregiving will increase and more community-based resources will need to be tapped as family members find themselves unable to shoulder the burden alone.

The winner of the 2006 national Purpose Prize for her social work with the NFCA, Mintz has been widely recognized for her achievements in caregiving.  Her passionate advocacy has drawn attention to many of the previously neglected issues surrounding caregiving, and provided support for many caregivers who often have nowhere else to turn.

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To read a review of Suzanne's latest book, see A Family Caregiver Speaks Up: It Doesn’t Have to Be This Hard.