"The universe is made of stories, not of atoms."
—Muriel Rukeyser

Dana Foundation Interviews AEI Client Lisa Cerasoli

Caring for a family member with Alzheimer's


One of the first reviews of Lisa Cerasoli’s memoir asked, “Did Cerasoli just make Alzheimer’s disease hip?” The comment may seem strange or even critical, but it was exactly what the author was going for.

“I had to actually look up the definition of ‘hip’ because I thought to myself, ‘Isn’t hip something you want, like a cool pair of shoes or a great car?” Cerasoli said in a recent phone interview. “Alzheimer’s disease – how can that be hip? Well, I discovered that hip means relevant to our time. It means something that people are talking about; something that’s current.

“I wanted to write a book about this horrible mind-stealing illness and I wanted it, in fact, to be hip. I wanted it to be something that people want to talk about, that people want to read about.”

Mission accomplished. As Nora Jo Fades Away: Confessions of a Caregiver is an entertaining, informative peek into the home of a person who has Alzheimer’s. Released in June and a first-place winner at the Paris Book Festival, the book reads like fiction but it is a factual account of the day-to-day work that goes into caring for someone who has dementia.

Confessions of a Caregiver

Nora Jo is Cerasoli’s grandmother, now 89. She lost her youngest son (Cerasoli's father) in July 2003 and her husband, who had Alzheimer’s, less than a year later. Shortly after her husband's death, Nora Jo started to show signs of the disease. In early 2008 Cerasoli and her husband took her into their home, the result of which is a memoir that’s funny, heartwarming, sad, and eye-opening.

While Cerasoli did include a chapter about the facts and fiction of Alzheimer’s, that was not the purpose of the memoir. She had read plenty of informative medical books; she wanted to write something for the caregivers. “Sort of a hidden caregiver’s survival guide,” she said.

She was the keynote speaker at the 2010 Caregiving Conference in Michigan, held by the Alzheimer’s Association, and will participate in the Women’s Conference (October 24-26), hosted by Maria Shriver and Arnold Schwarzenegger. The latter features the March on Alzheimer’s, which Cerasoli will be participating in.

Some research suggests that walking and other forms of exercise can help stave off Alzheimer’s. “You can be proactive in possibly preventing this illness, which is good news to people like me, who had one grandparent pass away from it, and another who is currently suffering,” Cerasoli said. “You can imagine the fear I live with deep down inside as I watch this happen to my Grams. I think to myself, ‘What can I do?’”

Cerasoli is encouraged by the news about drugs that may be better able to treat the symptoms of Alzheimer’s, but hopes researchers can take the next step. “We need preventive medicine,” she said. “We don’t need medicine to fix the symptoms or to keep the symptoms at bay for a couple of months longer.”

Lisa Cerasoli and family(l to r) Lisa Cerasoli, her daughter Jazz, Nora Jo, and Lisa's mom Sherie

As long as this disease exists, there will be a need for caregivers like Cerasoli. “Part of my mission and my purpose right now is to connect with other caregivers and to make them feel like they’re not alone,” she said. “I want to help them deal with the guilt, the exhaustion, the outright confusion…to get them through the day.”

Despite Cerasoli and her husband being very capable, relatively young caregivers (they are in their 40’s), they decided to hire help at the start of the year. Nora Jo still lives with her granddaughter, and Lisa still is an active caregiver, but she sought out help and suggests others do the same if they feel it is necessary.

Nora Jo will be re-released in a few weeks with a new foreword by Leeza Gibbons, a television and radio host who founded Leeza’s Place, a respite center for caregivers, after her mother died of Alzheimer’s in 2008.

--Andrew Kahn

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