Dr. Charlie Farrell ’59 sits next to his wife, Carol, at their kitchen table and waits patiently for what she has to say. A visitor is asking her about the couple’s life. Carol’s responses are soft and often delayed. Frequently, Charlie has to help finish her sentences or correct her facts.
“We spent our 41st anniversary,” Carol begins, then drifts off. Seconds pass. Then she looks at her husband and says, “Charlie?”
“Yeah, we took a bike tour of Nova Scotia,” he says.Carol, 75, has Alzheimer’s disease, a serious form of dementia for which there’s no cure. Charlie, also 75, is her prime caregiver. They’ve been married for 51 years and live in Westlake, Ohio. He’s a retired vascular surgeon, who majored in philosophy at John Carroll. She’s a retired medical technician who attended college in Columbus. They met in a morgue — yes, really — and raised five children. They have eight grandchildren.
This should be the time of their lives when they’re doing things they enjoy most: traveling, eating out, socializing with old friends, and spending lots of time with their grandkids. But life changed dramatically for them about seven years ago when Carol noticed she was having trouble remembering things. During the next two to three years, her symptoms worsened.
Carol’s situation is complicated by the fact she also has Parkinson’s disease, a condition that causes shaking, which makes it difficult to maintain balance and walk.
“The big thing right now with Parkinson’s is you don’t fall,” Carol says.
Charlie is with her almost all the time. She can’t get out of bed by herself in the morning and needs help making sure she takes the piles of pills she needs each day. A home aide comes a few times a week so Charlie, an avid runner, can run and have breakfast with friends.
“I really can’t stay alone,” Carol says softly.
It’s been a big adjustment for them both.
“Taking on the role of caregiver is a whole new endeavor for me,” Charlie says. “As a physician, I always viewed myself as being a caregiver, but in that role, you were expected to know what’s wrong and fix it. Now, you realize as much as you’d like to cure this, that’s not going to happen. Your real role is to be part of a support community.”
Strong, consistent support has been difficult to find.
“One of the biggest problems we have is many people, including some friends, are afraid of people with dementia,’’ Charlie says. “Most of the people we were friendly with have faded away.”
That’s been hurtful and lonely for them.
What Carol needs as much as her pills is people’s presence and involvement in her life. She needs friends who help her feel a part of life, not on the fringes of it.
“When someone comes to visit, even for an hour, it’s nice,” she says.
That’s why Charlie has made it his mission to find ways for his wife and others with Alzheimer’s to be social. He’s started the Carolyn L. Farrell Foundation for Brain Health, which started free, weekly creative storytelling meetings for people with Alzheimer’s. Called TimeSlips, the program focuses on creativity and imagination, which research shows is the best way people with dementia can engage, Charlie says.
The foundation also started an annual bike ride to raise money for more support groups. Charlie and Carol used to ride a tandem bike together, but her diseases have progressed to the point where she can’t ride anymore. Instead, she exercises with a good friend in the indoor pool Charlie built off their family room about seven years ago.
While the couple laments the loss of some old friends, they cherish the new ones they’ve made through Carol’s support groups and outside caregivers. They’re also active with their daughter Katie’s church – Olmsted Unitarian Universalist Congregation in North Olmsted, Ohio – and like hosting family and friends at home.
“We, as a community, need to know these folks with Alzheimer’s are empty unless someone fills their lives,’’ Charlie says. “They can’t do that on their own.” JCU
– Sue Valerian
For more information about the Carolyn L. Farrell Foundation, visit farrellfoundation.com.