When Gary’s wife, Mary Ellen, was diagnosed with dementia, he faced the taxing challenges of becoming a primary caregiver. He never expected to be put in this position, and balancing daily care, emotional strain, and uncertainty about what to expect next left him searching for qualified guidance. Gary found support through the Caregiver Coaching program at Institute on Aging (IOA)—offered as part of IOA’s Companioa dementia support program—and gained the tools, knowledge, and community he needed to navigate the complexities of caregiving.
Married for over 60 years, Gary and Mary Ellen first moved to the San Francisco area 13 years ago. While being hospitalized for pneumonia in 2019, Mary Ellen unexpectedly received a dementia diagnosis from the hospital staff.
“When she was in the hospital, they were pretty open with the diagnosis,” Gary says. “They said she has the signs of dementia. What affected me so much was when she told me how low she felt, or that she felt like she was dying. I encouraged her not to give up, but then I went to the car and just bawled like a baby. I felt helpless and that I couldn’t do anything.”
Gary began to feel frustrated, lonely, and exhausted, the telltale signs of caregiver burnout that more than 60% of dementia partners experience. After trying several other programs with mixed results, Gary connected with IOA’s Companioa dementia program, and found a trusted partner in his caregiving journey.
“We started with one-on-one coaching, which gave me great ideas on how not just to support Mary Ellen, but how to take care of myself as well,” Gary says. “It’s hard to know what’s normal and what’s not when you are caring for someone with dementia, and it helps so much to talk through these things.”
In addition to individual coaching, Gary participates in group support sessions where caregivers share experiences in a safe, understanding environment. “I’ve learned so much from the other caregivers,” he says. “It’s very comforting to know I’m not alone in this.”
Before finding IOA, Gary had encountered the same challenges many caregivers face in finding clear guidance after a dementia diagnosis. “You’re kind of left to figure it out on your own,” Gary says. “That’s why people like Caregiver Coach Alex and programs like Companioa are so valuable; they give you direction when you need it most.”
Too many families are left to navigate dementia care alone, and IOA is working to strengthen the overall dementia care system through partnerships with healthcare providers and community organizations. By collaborating with these partners, IOA advocates for earlier diagnosis, clearer care pathways, and greater access to resources for both those living with dementia and their caregivers.
Today, Gary continues caring for Mary Ellen and actively participates in the IOA caregiver community. He now speaks out for more comprehensive caregiver education in the healthcare system in hopes that other families can access the support he found.
“No one should have to navigate a dementia diagnosis alone,” Gary says. “Having IOA in our corner has made all the difference.”
If you’re feeling uncertain about where to begin after a loved one’s dementia diagnosis, Companioa can help. Learn more at www.ioaging.org/companioa/ or call us today at 415.918.6620.
