For Orlando couple, Alzheimer’s isn’t just a tragedy, it’s a love story

Francisco Rios is a member of a small club that no one wants to join.

Once a month, Rios, 47, logs online from Orlando to video chat with a group of people with the same genetic mutation that gave him dominantly inherited Alzheimer’s disease, a very rare form of early-onset dementia. There are fewer than 10 people in his group and only one is over 50.

“Sometimes it’s sad, sometimes it’s funny. Sometimes it’s well, you know, heartbreaking, but it’s what life is, right? You’re not always going to be sad. You’re not always going to be happy. It’s just a roller coaster,” Rios said. “And it’s a blessing that I’ve met good people in my support group.”

He’s supported as well by his wife, Zahydie Burgos, a 38-year-old clinical psychologist. To help her husband with his currently mild symptoms, she’s taken over managing the household finances and started working from home. She shuttles him to doctors’ appointments and travels with him to and from Missouri and Puerto Rico for an ongoing clinical trial. She’s started social media accounts to raise awareness about his disease, particularly among other Hispanics, who suffer from it at disproportionate rates. Her Tiktok is @unforgettablemind, and her Instagram is @inolvidable.mente.

Burgos’ stance on their situation is clear: though this is tragic, it is not a tragedy. It’s a love story.

“We know what true love is. And I know that not a lot of people get that in their lifetime, but we did. And I’m so happy; I’m so lucky to have that,” she said. “Whatever caregiving I’m doing is only carried because of the love, is only carried because of the respect that we have for each other. … I make sure that I am keeping his integrity, his dignity, who he is, and not forgetting about that.”

Burgos’ commitment to her partner of 20 years is shared by hundreds of thousands of other people in the state.

Behind the estimated 580,000 Alzheimer’s patients living in Florida stand 827,000 loved ones providing unpaid care, often on top of full-time jobs, according to estimates from the Alzheimer’s Association.

Caregivers vary in age, race, economic status and background. Lucky ones, like Burgos, are young, healthy and engage in tools to manage their mental health.

But even with all the right resources, it can be difficult. The majority of caregivers for people with Alzheimer’s have at least one chronic health condition themselves, can’t afford help, and nearly one in three are depressed, according to a 2023 Alzheimer’s Association report.

Rios said he saw firsthand how difficult his mother had it when his father deteriorated from the disease, and doesn’t want his wife to go through something similar. At the same time, the Orlando couple is determined to make meaning out of the diagnosis. They have become advocates, spreading awareness of early onset Alzheimer’s and sharing the importance of prioritizing mental health for patients and their caregivers.

Burgos, a clinical psychologist, is part of multiple support groups, arranges therapy for both herself and her husband and leans on loved ones, who stay with him while she goes to work or attends yoga. She knows the importance of mental health and encourages open discussion about it.

“A lot of people do not have the family, the friends that will step up to the plate and give you a hand. So to me, that is the foundation for everything else,” Burgos said.

Rios agreed.

“I am so thankful to have [my wife] on my side through this process. I am one of the lucky ones that has so much support from my family,” he said.

Lyndsey Taylor, program manager of the Central and North Florida chapter of the Alzheimer’s Association, says support exists even for caregivers without a strong network of friends and family. The Alzheimer’s Association offers some, and the state offers training and care navigators who can connect families to local resources, available at its 24/7 helpline: 800-272-3900.

“We have a ton of free resources, but we kind of see that they’re underutilized or that the awareness of these resources just isn’t there,” Taylor said. “We’re really doing a push to try to talk to caregivers and say, ‘You need to focus on your own self-care. Asking for help through support groups, or respite care, isn’t weak; it’s a necessity.'”

Black and Hispanic people may be even more reluctant to access respite care because of cultural values, said the Alzheimer’s Association’s Director of Diversity, Equity and Inclusion Keith Gibson. People of these ethnicities disproportionately take on the role of caregiver for their relatives with Alzheimer’s.

“In both the Black and Hispanic cultures, it’s all about taking care of your own. And, you know, it’s also commonplace in the Black and Hispanic communities, as part of their cultural values, that they don’t want anybody to know about their business,” Gibson said. “That kind of leads to a shielding or isolation … which contributes to the higher rate of Black and Hispanic caregivers.”

At the same time, not every caregiver who seeks help will get it in Florida.

Even though the state leads the nation in Alzheimer’s funding, only a small fraction goes toward supporting unpaid caregivers. Many cannot afford to pay for others to care for their loved ones, and long waitlists for state support services keep them from getting assistance.

One of Burgos’ main concerns is whether they will be able to continue to afford her husband’s care as he needs higher and higher levels. He may eventually need to enter an inpatient memory care unit, which averages nearly $7,000 a month in the U.S., according to the American Association of Retired People.

“When you think about the amount of money, it’s a lot and it’s scary, and it’s just, it’s very intimidating,” Burgos said.

In Florida, free and discounted respite care for caregivers is available through the Alzheimer’s Disease Initiative, which offers services such as adult daycares or home aids. The initiative served over 15,700 last year and is set this year to receive a record $60 million from the state, pending the governor’s approval. This program can be accessed through local area agencies on aging.

The waitlist for respite care, however, is over 16,000 statewide as of April and 1,251 in Central Florida as of June, according to the region’s area agency on aging, the Senior Resource Alliance. Only a small portion of this year’s funds — $3.6 million — were allocated toward getting people off the waitlist.

Burgos said she will continue to care for her husband until she no longer can.

“I will always do whatever is in his best interest,” she said. “If at any point, I feel that his needs are greater than what I can help or provide, then he needs to trust that I will always do what is best for him.”

Ccatherman@orlandosentinel.com, @CECatherman Twitter

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