
Living with early-onset alzheimer’s
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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. Myra Garcia and her husband of 35 years, Rick White Sam Comen 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.