‘This Is My Life Now’: Living With Early-Onset Alzheimer’s

Although the diagnosis confirmed her worst fears, Garcia finally had an explanation for her symptoms. “It was a turning point, for sure, when I got my diagnosis. There it was, in writing,” she says.

It also provided clarity for her husband of 35 years, Rick White, who sometimes felt frustrated by what he had thought was Garcia simply not paying attention. A businessman who is extremely organized, White says Garcia remains highly functional, though he has seen the disease’s creeping impact, prompting concern that she may be overestimating her ability to handle something. For example, when Garcia is on the phone with a health insurance company, he worries that she may not fully understand, or accurately recall, the conversation.

“You don’t know what she’s telling them, or what she’s comprehending,” he says. “I feel like I have to get involved.”

The importance of planning ahead

The loss of her job during the pandemic meant Garcia was able to get unemployment compensation and, later, disability benefits, and she continues to have health care through her husband’s job. Fortunately, Garcia also had made sure to prepare for long-term care and get other important matters in order years ago, even before her Alzheimer’s diagnosis.

“I must have had a sixth sense about this because I insisted, with my husband, to get long-term care insurance,” she says, adding that her family history with the disease may have also played a role in the decision.

Long-term planning was not a topic that was discussed or even pondered as she was growing up. Her parents, she notes, were salt-of-the-earth immigrants who worked in embroidery factories and had limited knowledge of these issues.

“My dad went through third grade and my mom went through elementary school. Those were hard times in Cuba,” Garcia says. “They didn’t have anything, but they were frugal. I remember when my dad would sit at the kitchen table with money they’d earned and try to dole it out carefully.”

Perhaps because her legal and health care documents are already in place, she and White do not discuss worst-case scenarios that may lie ahead. 

“We haven’t had that conversation; it’s a difficult conversation to have,” Garcia says. “We did our wills. We have done a lot of the planning that needs to be done.”

It’s a family affair

The diagnosis has also changed family dynamics. 

Garcia’s son from a previous marriage, Dan Fernandez, says he has taken on an almost parental role with his mother in recent years.

“We’ve always had a great relationship,” says Fernandez, who is 47 and lives with his wife in Pittsburgh. “She’s been there for me my whole life. She’s supported me, given me advice on how to handle situations, taught me a lot. Now I feel like our roles are reversing.” Frankly, he says, “I’m worried about her.”

The changes in his mother first struck him about five years ago, he says, when she asked him about something they had just discussed and seemed to have no recollection of their conversation.

Then, earlier this year, he says, Garcia was returning to California from visiting him and failed to change planes in Texas, ending up in Denver. Now Fernandez plans her trips out to see him, making sure to book his mother on direct flights and speaking with the airline to make them aware of her condition.

“That was a pretty scary situation for all of us in the family, that she could get lost, whether in an airport or if she’s out and about,” says Fernandez.

He also keeps tabs on his mother through weekly video calls that the family began at the outset of the pandemic.

“Spending time together [with the family] is very important to her, she’s highly social,” said Garcia’s older sister, Gia Garcia, who lives in Arizona. “We all immediately said yes. We’ve always been close as sisters. It’s one of the ways in which we support her.”

They’ve continued the meetings each week, and Gia travels to California a few times a year to spend long weekends with Garcia.

“I want to spend as much time with her as I can before I lose her,” she says. 

Finding new purpose

At the behest of the neuropsychiatrist, Garcia participated in a clinical study for Alzheimer’s patients at the University of Southern California and continues taking the medication, donanemab, provided through the drug trial. Donanemab, a monoclonal antibody from drugmaker Eli Lily, is being tested to see if it can slow cognitive decline in people with early Alzheimer’s. 

Knowing that the disease would continue to progress, Garcia took a hard look at her struggle to perform on the job. The new reality, she concluded, was that she could no longer work. 

Garcia opted to reimagine a life around Alzheimer’s. She decided to turn it into a cause. She reached out to the Alzheimer’s Association for information about the condition and to see how she could help.

Her mission became to sound the alarm in the Latino community about the importance of knowing the early signs of Alzheimer’s and taking the disease seriously. Garcia is a member of the 2022-2023 Alzheimer’s Association National Early-Stage Advisory Group, a role in which she participates in outreach campaigns targeted at Latinos and other minority groups.

“There are 6.5 million people in the U.S. who have Alzheimer’s, and I learned that those with the greatest preponderance are Latinos, African Americans and Asians,” Garcia said. “We know that communities of color tend not to seek out care, either because they don’t have the ability or resources or the information. There’s a stigma about Alzheimer’s in general, and many people don’t really understand it.”

Garcia wants others to avoid the long, frustrating path to a correct diagnosis that she endured. 

“People [should] not second-guess themselves if they think they’re having problems,” she says. “They should get themselves checked out. I probably could have been diagnosed years earlier than I was, but once I was given that ADD diagnosis, I accepted it.” 

And she wants to enlighten Latinos about the many resources that might have spared her aunts the hardships they suffered as their disease progressed.

One aunt’s disease made her belligerent, leading her to threaten to kill her husband. The other aunt, a widow, stopped tending to her affairs. She neglected her hygiene. She let her condominium fall into disrepair and stopped paying the association fees, leading her to lose the home, even though the mortgage had been fully paid while her husband was still alive.

In her advocacy work, Garcia reaches out to legislators, takes part in fundraising events for Alzheimer’s and delivers talks about her own experience with the disease.

“Once I realized I could no longer work,” she says, “I decided to put my experience out there. I thought, This is my new normal, this is my life now. I have nothing to be ashamed of.”

Her cause also includes continuing participation in the USC clinical trial and pushing to raise the low numbers of minorities in such studies. 

“She’s doing important work,” Garcia’s sister Gia says. “I tell her I’m really proud of her.” 

Garcia believes donanemab, the experimental drug she’s receiving, is helping slow the disease’s progression, but she can’t be sure, because it may well be a placebo, she notes. The study Garcia is participating in is a randomized, placebo-controlled trial, considered the gold standard of research, where half of the study group receive the medication and the other half receive a placebo or standard care. The researchers don’t know which group a patient is in, so they are not biased about the results.

“I feel I’m doing something for myself, I’m taking charge of my disease,” she says of being part of the clinical trial as well as educating others about Alzheimer’s. “I choose to be part of this study. That gives me agency. I know I’m doing something [important], if not for myself then for society, for the people coming behind me.”

Knowing the “how” but not the “when”

Always a take-charge person, Garcia has made peace with letting others handle tasks that now are beyond her abilities. Her two adult sons have taken over making lechón asado, a Cuban roast pork dish that Garcia had long made for special occasions but that involves steps she now finds too complex. Her husband has taken more control of financial matters, an area Garcia finds overwhelming now.

“Before my diagnosis, I never asked for advice. I just did things the way I thought they should be done financially,” she says. “I’m leaning on him a whole lot more than I ever have. And when we have to make a family decision about something, I will defer to him, whereas that wasn’t always the case. I have relinquished a lot of that.”

There are times when the limitations bring her down.

“It’s frustrating and saddening,” she says. “It makes me sad when I find something I used to be able to do, now is difficult. There’s a sadness, there’s a loss. But I try really hard not to dwell on the sadness.”

Instead, Garcia devotes her energy to what she still can do.

She sings in three choirs and volunteers at the memory care center of Hillcrest, a retirement community in La Verne, California. 

“I sing for them and with them,” she says of the memory care residents. “I feel they’re my people. They’re way further along than I am, and it brings me joy to be able to help them.”

At times, when she’s with them, Garcia sees a reflection of her future.

“It’s going to be me … there’s no doubt,” she says. “We’re all going to go. It’s just a question of when and how, and this is my how. I don’t need to know the when. I’m just going to keep doing what I’m doing and trying to be as viable as possible.”

She practices yoga, rides her bike and plays golf. Next year she plans to travel with her church choir to Ireland. The trip will be especially meaningful for the erstwhile world traveler, who had to give up frequent overseas trips as her Alzheimer’s progressed.

“I’ll be there with a lot of good friends from church who’ll take care of me,” she says.

Garcia, whose sons are not yet parents, hopes she can enjoy grandchildren someday while she can still participate in their lives in a meaningful way. But she won’t push her sons about it, she stresses.

“I have a clock ticking,” she says. “When they remember Grandma, I hope it’s not just Abuelita who just sat in the corner and never spoke.”