Lisa Larkins thought she was planning ahead.
She and her husband bought a ranch house in Greece seven years ago with an in-law suite for her parents. They moved in, and things were good.
Then, just as the pandemic hit, her dad’s health started failing. He died in February 2021. And three months later, her mother was hospitalized with congestive heart failure.
“I'm still going through the grief of having lost my dad,” she said. "And I'm like, ‘Oh my God, I'm losing my mother.’”
The years since have brought other health problems for her mother, including colon cancer — now in remission.
“And then this year,” she said, “we got the diagnosis of Alzheimer's.”
For anyone thrust into a caregiver role, it can feel like drowning, having to quickly get up to speed on medications, bills, legal paperwork, assess care options — the fit, the quality and the cost. And while there is a wealth of information and resources out there, there is no one-stop shop. It’s often a road people are left to navigate, even chart, on their own.
“It's a very difficult path to go down,” Larkins said. “And when you're already emotional, or sad, or nervous, frustrated. It makes it 10 times worse.”
Lifespan of Greater Rochester has been a great help in adjusting her mom’s insurance and prescription drug coverage, getting her qualified for Medicaid. She signed up for financial assistance with UR Medicine and Rochester Regional Health. And for Mom’s Meals, which is covered by Medicaid.
But there have been challenges.
That is where an online resource called Trualtahas helped — providing free web-based training, tips and other resources organized and searchable by condition, behavior or task.
Trualta is available in 32 states and has been used by more than 12,000 caregivers. That includes 2,000 New Yorkers since the program rolled out here in May 2022. Studies have found high rates of engagement and continued use, particularly for those caring for loved ones with dementia, with people reporting increased confidence with skills learned, and overall reduced burnout.
It is only as good as the local partners. In New York, that is the state’s Office for the Aging. And to date the number of local resources is limited. One area Larkins would like to see fleshed out is around respite care. But one of the greatest resources, touted by the organization and Larkins alike, are the virtual support groups.
“Through talking with these people, week after week, you become friends with them. And I would say, well, my mom has this problem ... ‘Oh, well, here's what we did. And here's what we bought. And here's a link to Amazon and you can get them cheaper. If you go through Medicaid.’ I'm like, whoa, whoa, let me take notes.
“To me, the real-life experience versus trying to research on the internet was a lifesaver.”
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This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The reporting is supported by the Solutions Journalism Network.
The collaborative’s series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.
