More Floridians are caring for loved ones with dementia. Advocates say they need help
One Clearwater woman says caring for her wife with Alzheimer's disease wouldn't be possible without help from a "tribe" of friends and community services.
Ellen and Linda Guevel were feeding their two small dogs Missy and Ava one recent evening inside their Clearwater apartment. Ellen chopped up chicken while her wife Linda, donning a shirt that read, “Don’t tell me what to do, you’re not my dog,” put some kibble in bowls.
Most responsibilities in the couple’s lives have fallen on Ellen ever since Linda was diagnosed with Alzheimer’s disease in 2016, but helping out around the house has become an important part of her daily routine.
“At the beginning I really didn't think it was, that it was that bad,” said Linda Guevel, 73, of her diagnosis. “But now it's getting worse, and you can't get away with dementia.”
More Floridians are living with Alzheimer’s disease, according to a March report from the Alzheimer’s Association, and as a result, more loved ones are taking care of them, often for free.
For Ellen Guevel, sometimes that means helping her wife remember a word she went blank on or reminding her that they keep the ice cream she likes to eat every evening in the freezer. But other times, it’s more serious, like when Linda broke her ankle last spring.
“That was a trial,” said Guevel, shaking her head. “She doesn’t remember what she's done to her ankle, so keeping her off of her ankle was almost a full-time job.”
And Guevel, 57, already has a full-time job working for a major bank. She wants to keep her partner of 26 years home with her and the dogs for as long as she can safely, but sometimes it's hard.
“It takes its toll, you know? I'm not going to lie about that,” Guevel said.
Caregivers face significant challenges
There are roughly 827,000 people in Florida providing unpaid care to someone with dementia, an increase of about 21,000 from the year before, according to Stefanie Wardlow, a program manager and research champion with the association’s Florida chapter.
“Why are there more family caregivers? The simple answer is there's more cases of Alzheimer's disease,” Wardlow said.
The association projects 720,000 seniors will be living with Alzheimer's in the state by 2025, a 24% increase from 2020.
Meeting their needs will require significant increases in the number of health care professionals trained to work with this population, the report finds. But it will also increase the burden on family and friends who already provide an estimated $23.4 million worth of unpaid care in Florida.
The report finds caregivers of people with dementia are more likely to feel emotional, financial or physical strain than those caring for people with other medical conditions.
Two-thirds of Alzheimer’s caregivers in Florida, most of whom are women, reported having chronic health conditions themselves, while close to 30% said they have depression.
"Alzheimer's is the slow goodbye"
To understand the challenges they face, one must understand the nature of Alzheimer’s disease, said Wardlow.
Alzheimer’s impacts the brain, and while it may initially involve mild memory loss, things get worse as it progresses. People can become disoriented with their surroundings or paranoid and distressed toward loved ones they struggle to recognize. The disease can affect bodily functions as well such as swallowing or going to the bathroom.
Some caregivers may witness this deterioration quickly, while others could be on the job for years.
“Alzheimer's is the slow goodbye, so little by little families are gradually losing their loved ones, somebody with the disease is gradually losing themselves,” said Wardlow.
It's often frustrating for Linda and Ellen Guevel. But they say their love for each other, and a strong support network, help them make the best of it.
Help is available - but is it accessible?
Guevel's company lets her work from home a couple days a week to be with Linda. On the days Ellen is at the office, Linda goes to an adult day care center in Clearwater called Daycations.
There, she and other seniors who need assistance can socialize together while staff engage them in activities. Linda enjoys bingo, painting and the occasional visit from an Elvis impersonator.
“It was a godsend — is a godsend — to me,” said Linda Guevel. “It's a great place to be and that really is what keeps me going.”
She wishes she could go more often, but they can't afford it.
Medicare doesn't cover adult day care, something Ellen Guevel wants to see change. The state has programs that do, but they are not always accessible.
“Florida has a significant waitlist,” said Wardlow.
More than 100,000 Floridians are waiting to access programs that help seniors age in place and offer respite for caregivers, including Community Care for the Elderly, Home Care for the Elderly and the Alzheimer’s Disease Initiative, according to the Florida Council on Aging.
The Alzheimer’s Association has urged the state to invest more to clear that backlog.
The budget that Gov. Ron DeSantis signed on June 15 does include a $4 million funding boost for the Alzheimer’s Disease Initiative and another $5 million for the home and community care programs. But that may not be enough.
Support from "the tribe"
For now, Ellen Guevel says she gets help caring for Linda from “the tribe,” a group of longtime friends they met singing in a local women’s chorus.
These dedicated ladies give Linda rides to day care and appointments, or spend time with her when Ellen needs a break. That time Linda broke her ankle? The Guevels had just brought home a puppy and Ellen was sick with COVID-19.
“I called my friends. I said, ‘I need your help. They came and picked up the two dogs and kept them until after she had her surgery. I mean, who would do that? A new puppy! That's the kind of friends we have,” said Guevel.
It doesn’t always have to be a grand gesture, said Guevel. Sometimes friends or neighbors will drop in to just sit on the porch with Linda in the evenings so Ellen can play in her bowling league. Or they will take Linda out for a pedicure while Ellen stays home and works.
Getting relief from one job in order to work another may not sound ideal, Guevel acknowledged.
“But I also didn’t have to be concerned about where [Linda] she was and what she was doing, and that was as much of a break as anything else,” she said.
The Alzheimer’s Association encourages other members of the community to offer similar assistance to caregivers in their lives.
“If you know a caregiver, make yourself available to them, check in with them and call or text to ask them how they’re doing,” said Wardlow. “Even if their response is short, you know they might not be ready to accept help, but they’ll know that you’re there and you care."
The Guevels say they consider themselves blessed because they know not everyone has a "tribe."
They say caregivers need relief financially and emotionally — and say government and health care leaders should do more to help.
The Alzheimer's Association operates a 24/7 helpline at 800.272.3900 (dial 711 for a TRS operator).
It also has an online resource hub for caregivers that outlines what to expect when a loved one has Alzheimer's disease, offers tips for long-term care planning and lists some support groups.
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