Living with early-onset alzheimer’s

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.