The ALS Association

Ice Bucket Challenge Progress
Brian Frederick
The ALS Association



A Labor of Love: The ALS Association Honors National Family Caregivers Month

Washington, D.C. (November 1, 2014) — November is National Family Caregivers Month. This year, as in the past, The ALS Association honors the significant contributions —social, emotional and economic — of unpaid family caregivers.

According to Caregiver Action Network, family caregivers provide an estimated $375 billion annually in “free” care in caring for older adults. In addition, nearly 70 percent of family caregivers are women.

Liz Sullivan of Raleigh, North Carolina is among the 66 percent of women in the United States who have assumed the role of caring for a sick or elderly family member. Sullivan’s husband of just nine years, 75-year-old John Sullivan, was diagnosed last August with ALS (amyotrophic lateral sclerosis). Also known as Lou Gehrig’s Disease, ALS is a progressive neurodegenerative illness affecting nerve cells in the brain and spinal cord.

In the last six, months John has gotten “weaker and weaker,” the 77-year-old Sullivan said. “There are fewer things he can do himself,” adding that he’s now confined to his wheelchair. Nonetheless, one of many highlights in their daily lives is the time John sits on the couple’s front porch, also known as “gab central,” as Sullivan likes to call it, where supportive neighbors drop by to talk.

Since John is a military veteran, a caregiver, provided by the Veterans Administration, comes for two hours every morning. “I can’t fathom how people can manage caregiving on their own,” Sullivan said, referencing the small things she “took for granted” prior to her husband’s ALS diagnosis, like being able to spontaneously ask John to run an errand or make her a cup of the tea they sip together at breakfast time. 

“The burden of ALS on a family caregiver can be tremendous,” said Barbara Newhouse, President and CEO of The ALS Association. “Caregivers are too often the hidden face of ALS. As the disease progresses, the demands on the caregiver often increase significantly often leading to caregiver stress, illness, and financial hardship.”

The notion of caregiving without support and reprieve has a history of being studied. According to the book, Family Caregiving Across the Lifespan by authors Eva Kahana, Davide E. Biegel and Mary L. Wykle, “Sixty-one percent of ‘intense’ family caregivers, those providing at least 21 hours of care a week, have suffered from depression.”

With this in mind, Sullivan makes sure to meet with a girlfriend for lunch at least once a month.  Also, Kathleen Sullivan, John Sullivan’s adult daughter, lives nearby and shares caregiving for John on days when Liz Sullivan joins 15 other “crafters” around a table two times a month. Kathleen also takes her father to church every week. “My husband has a very strong sense of faith, which sustains him during this difficult time,” Sullivan says. Liz Sullivan’s creative outlet is meaningful to her. “I don’t deviate from being at the crafting table because it’s so important for my sense of well-being,” she said.

In addition, The ALS Association provides a respite program for caregivers and support groups designed to help those affected by ALS to maintain control over their lives and cope with symptoms of depression and burnout. A listing of all ALS Association chapter support groups can be found here.

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

Powered by Blackbaud
nonprofit software