YARMOUTH — When her mother was diagnosed with Alzheimer’s 12 years ago, Catherine Gentile began a long and difficult journey.
She became a caregiver, a student of the disease, an advocate for its patients. And as her mom continued to withdraw, to lose her sense of self, Gentile learned to search for those sparks of life that showed that, somewhere inside, her mother remained.
“When you least thought she was processing something, when there was no expression and no movements, she’d say something that was spot on,” Gentile said. “And you were just completely blown away.”
Today Gentile, 64, a writer and educator, edits an electronic magazine called Together with Alzheimer’s. Late last year she published her first novel, “The Quiet Roar of a Hummingbird,” in which a teenage girl exposes the abuse suffered by her dementia-stricken grandmother in a skilled nursing facility. This month the Yarmouth resident will lead a series of discussions entitled “Care and Support for the Caregiver” at 7 p.m. on March 12, 19 and 26 at Sacred Heart Church.
Gentile said the sessions will be a bit of an experiment. She plans to approach the first one diagnostically, listening to the interests and concerns of caregivers and using them to shape subsequent meetings. Practical advice about how to approach doctors, lawyers and financial considerations, or when to put someone in a nursing home, may be another part of the conversation. More than anything, though, she wants to create an environment where people can comfortably share their experiences.
“It’s astounding that someone who used to make gourmet meals could forget how to boil an egg,” Gentile said. “And watching them come to that realization and wonder, ‘What’s happening to me?’ It’s mind-blowing. So I’m hoping this group can give people a place to talk. I have things to share with folks, but if they just need a place to have a cup of coffee and chat, that’s good too.”
“The Quiet Roar of a Hummingbird,” a coming-of-age story set in the fictional town of Bellesport, Maine, reveals many of the author’s painful observations about Alzheimer’s and its treatment. Patients are often over-medicated. Residential care is too impersonal. Family members struggle to confront the disease. Caregivers suffer from isolation, too, and become frustrated.
But much like her protagonist, Abigail “Hummingbird” Windsor, Gentile is most interested in finding positivity in a bleak situation. When language skills deteriorate, she says, look for behavioral communication. Rather than dwelling on the skills that patients have lost, focus on things they can still do, even if it’s just folding laundry or making the bed.
“How can we arrange the environment so they can still function with dignity and some self-respect, feel like they’re contributing?” she asks. “Nobody wants to sit in a chair and feel like they’re being warehoused.”
Throughout her book and in conversation, Gentile stresses that Alzheimer’s patients are processing more than it seems.
She describes a time she decorated a Christmas tree for her mother, who sat nearby, unresponsive, nearly comatose. Finally, when the tree was finished, “My mother reached out and touched it and said, ‘It’s beautiful,'” she said.
Her mother died a year ago, but Gentile will have that memory forever.
“It’s just such a hard disease that you have to have a little something to hang on to,” Gentile said. “And if you get so wrapped up in, ‘Hey, she’s not talking to me for an hour,’ you’re going to miss that little piece.”