Stefania Silvestri never imagined she’d become an Alzheimer’s caregiver at age 14.
Like a typical teenager, she’d often tune her dad out—“He was famous for explaining things in detail,” she says with a laugh—but she soon noticed that Giovanni was struggling with his words. He’d stutter, or have trouble calling up a word or phrase. His wife, Enida, also noticed something was amiss. The electrical engineer, who spent his days working with numbers, suddenly found calculating tips at restaurants daunting.
After a frustrating year of misdiagnoses, a doctor at Washington University in St. Louis delivered the devastating news: At 48, Giovanni had the brain of an 85-year-old, the result of early-onset Alzheimer’s disease.
Stefania, now 28 and living in Los Angeles, Calif., tells the story of her father’s diagnosis in a new memoir, Beside the Mountain: Finding Strength and Courage Through My Father’s Early Onset Alzheimer’s Disease. In the book she describes the six-year battle that ended with his death at age 54, and her own struggle to come to terms with it as a teenager, which included cutting and drinking.
“For a long time I was mad for no reason because I assumed no one would understand,” she says. “But maybe they would have. I would tell caregivers not to keep anything inside—create a network of people you can trust.”
In the book, Stefania doesn’t sugarcoat the experience of being an Alzheimer’s caregiver. She describes more than one terrifying moment when Giovanni disappeared from home, and his heartbreaking deterioration to a point where he could no longer recognize Stefania or her two sisters, Flavia and Nicole, or communicate his needs.
“I missed his voice,” she says, simply.
In retrospect, Stefania says her father’s illness taught her how strong her family unit was. But like most caregivers, they often felt overwhelmed and lonely. Enida attended some local support group meetings, but often felt depressed that she was the youngest caregiver there. She ultimately found comfort in online support groups.
“She would sit in the basement for hours and read other people’s stories,” Stefania says. “She’d gain strength from other people who had written about it before her.”
One of the most difficult decisions Alzheimer’s caregivers often have to make is when to place their loved one into long-term care. For the Silvestris, that time came when Giovanni couldn’t sit still or sleep through the night, and the family could no longer provide the round-the-clock care he needed.
“My mom wasn’t scared of nursing homes, but I was horrified the first time we went,” Stefania says. “But he had nurses there, and a long hallway he could walk up and down. It still hurt to go to see him, but that doesn’t mean it was a bad decision. Sometimes the right decisions aren’t easy.”
Enida even took a job at the nursing home to be closer to her husband in his final year—he died in 2004—and to this day remains a passionate advocate for nursing home reform and quality care.
Both she and Stefania also remain engaged with online Alzheimer’s caregiver support groups—which are now much larger and easier to find—including a Facebook group called “Us Against Alzheimer’s.” After everything they’ve been through, it’s satisfying to be a resource for others struggling to care for a loved one with the disease.
“It’s comforting that I was able to take something so terrible and recreate it into a book—something that I’m proud of,” Stefania says. “And the fact that people can read it and feel like they were helped is more than I can ever ask for.”