Friday, November 30, 2012


Suzanne Mintz, President and Co-Founder of the National Family Caregivers Association (NFCA) with her husband, Steven

“You are not alone.  There are more than 65 million Americans who provide care for a chronically ill, disabled, or aged love one.  We have a common bond.  We all feel isolated, scared, concerned about our own health and future and finances.” -Suzanne Mintz

Today marks the last day of National Family Caregivers Month.  The roots of National Family Caregivers Month can be traced back to 1994, when the National Family Caregivers Association (NFCA) began advocating for the celebration of family caregivers during Thanksgiving week.  The first Presidential proclamation addressing the week was signed in 1997 and in 1999 National Family Caregivers Week grew to National Family Caregivers Month. 

The President and Co-Founder of NFCA, Suzanne Mintz, became a caregiver at the age of 28.  It was 1974 and her husband Steven was diagnosed with progressive MS at the age of 31.  The diagnosis sent Suzanne and her husband on an emotional roller coaster.  Suzanne says, “it took us 20 years of turmoil before we came to terms with it and figured out how to live together peacefully, each dealing with it in our own way but also—and this is very important—learning to respect the other person’s approach to dealing with it.”

In 1993, 20 years after Steven was diagnosed with MS, Suzanne founded NFCA with her friend and fellow caregiver, Cindy Fowler.  Cindy was caring for her mother with Parkinson’s Disease.  Suzanne traces the beginning of the NFCA to “a conversation [Cindy and I] had that showed us that despite the obvious differences in relationships and diagnoses, Cindy and I were dealing with a lot of the same issues. It was the awareness of this common bond that set us on our path, first to create the newsletter TAKE CARE!, and then to become the National Family Caregivers Association.”

The Society works closely with NFCA and other family-focused organizations to advance policies and programs that help mitigate the physical, emotional, and financial toll of family caregiving. At the 2012 Public Policy Conference for example, MS activists urged Congress to provide $5 million for the Lifespan Respite Care Program that improves access to respite care.  Though appropriations aren't yet finalized, in June, the Senate Appropriations Committee released their funding recommendations which included $4.99 million penciled in for the Lifespan Respite Care Program. 

The financial impact of family caregiving was addressed in a Washington Post column earlier this month.  In the article, columnist Michelle Singletary shares her personal story as a family caregiver and urges the nation to invest in family caregiving. 

In this year’s Presidential Proclamation declaring November as National Family Caregivers Month, President Obama recognized that, “National Family Caregivers Month is a time to reflect on the compassion and dedication that family caregivers embody every day. As we offer our appreciation and admiration for their difficult work, let us also extend our own offers of support to them and their loved ones.”

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