In many ways, Hector Elizondo is a lucky man. The Emmy-winning actor has made a career as a character actor in movies—Pretty Woman and The Princess Diaries, among many others—and on TV, in series including Chicago Hope and Monk. And at 86, he remains healthy. He still exercises daily, as he's done since he was a teenager, and he reads voraciously, keeping his body and mind sharp. His good health is even more remarkable given that his mother and four of her sisters were diagnosed with Alzheimer's disease.
Courtesy Buena Vista/Photofest
For years, Elizondo and his younger sister have watched for every sign, certain the disease would claim them. Although Elizondo believes his mother and aunts may have had a hereditary form of the disease—genetic testing wasn't available when they were alive—he hasn't been tested because he has never shown any symptoms. Now the results wouldn't make much difference. “At this stage in my life, I'm cool,” he says. “I'll make a graceful exit, shall we say.”
His parents had no such luck. His mother, Carmen, began showing signs of Alzheimer's disease in her late fifties. Her condition, which was diagnosed as presenile dementia at the time (late 1960s), gradually progressed from forgetting people's names to being unable to remember anything. Elizondo's father, Martin, grew overwhelmed and depressed while caring for his wife and had to be hospitalized after a nervous breakdown. Martin died in 1974, and Carmen—who'd been admitted to a state hospital—died less than a year later.
Elizondo has made it his mission to educate others about the burdens of caregiving. “When I have the opportunity, I remind people that they have to be prepared as a family—this is a team effort. You can't take care of Mom or Dad on your own. It's not fair to anybody.” He encourages loved ones to know their limits and bring in professionals like home health care workers. “There comes a point when you have to give it up. You need help. You can't do it alone.”
Today, people have so many more resources than Elizondo's family had, including local government agencies on aging, senior centers, community organizations, and support groups. When his mother was diagnosed, “we had no idea what it meant,” the actor says. “We had high hopes that she would get over it.” Instead, she deteriorated, and her husband had to become her full-time caregiver, feeding and dressing her, assisting her in the bathroom, and taking care of the household.
Martin was devoted to his wife, but caring for her was draining. He didn't get help from her doctors, Elizondo says, and the Alzheimer's community was nonexistent. “There was no Alzheimer's Association,” he says. “There was no research for the disease, so we were in the dark. We were Columbus sailing against the sea, watching my mother disintegrate.”
Elizondo's parents had overcome hardship earlier in their lives. Carmen didn't know English when the couple moved to New York City from Puerto Rico during the Great Depression. They raised two children, who were fluent in Spanish and English, and Martin worked as a notary public, a position that gained him respect in the community.
When his mother developed dementia, Elizondo was just starting his acting career in New York and raising a son. He helped care for his mother as much as he could. “They lived in the neighborhood, so I would keep an eye on them, go to the apartment, and make sure things were copacetic,” he recalls. “Dad was doing a terrific job. I saw them walking hand in hand in the neighborhood. There was not much more you could do. We weren't getting help medically.”
Unfortunately, as Carmen's disease progressed, Martin got worn out “from trying to be the caregiver that he was not prepared to be,” says Elizondo. “Dad essentially wasted away from trying to do everything for Mom. He was a strong, healthy man, but I saw him disappear in front of my eyes.”
Caregivers of people with Alzheimer's or other forms of dementia no longer have to struggle like Elizondo's father did. “There's so much information and so many organizations that can help,” Elizondo says. “There's no real reason to be rowing across this ocean alone.”
As the population ages and cases of Alzheimer's increase, the role of the caregiver is getting more attention, says Joel Salinas, MD, MBA, FAAN, clinical assistant professor of neurology at NYU Langone Health and chief medical officer at Isaac Health, a clinic for brain health and memory problems. Home health services can relieve some of the caregiving responsibility, Dr. Salinas says, and cognitive skills training for people with dementia—which helps improve memory—can allow them to function more independently.
Reaching Out
In the decades since his mother's death, Elizondo has spoken publicly about his family's experience with Alzheimer's, both to the media and at special events. He encourages people to recognize early signs of dementia and be sure their loved ones see a doctor if they exhibit symptoms. “It starts with ‘Where did I put my glasses?’ and it ends with ‘Oh, I found the glasses. Now what are these for?’” he says. “It's one thing to lose your glasses; it's another thing to not know what to do with them.”
Elizondo also spreads the word that caregivers need to ask for help. “Don't let it get to the point where you say, ‘This is too much for me.’ You might get sick.” He compares the situation to how airplane passengers are told to put on their own oxygen masks in an emergency before assisting others. “Put the mask on first,” he says. “That's what my dad didn't do.”
The risk for Alzheimer's is 1.5 times higher among Hispanic people than among White people, according to the Alzheimer's Association, yet Elizondo says a stigma remains in the Latino community about diseases that affect people's mental state. “It has the slight stain of ‘Is there craziness involved?’” he says.
That stigma may make it hard for people to admit they are having a problem, adds Alberto R. Ramos, MD, FAAN, professor of clinical neurology at the University of Miami's Miller School of Medicine. “In many Latino communities, there's a reluctance to discuss these conditions, partly due to misconceptions about these illnesses. The hesitation often stems from concerns about being perceived differently or negatively.”
Educational outreach on Alzheimer's has improved, says Melissa Murray, PhD, professor of neuroscience at Mayo Clinic in Jacksonville, FL, with the availability of pamphlets and other information in multiple languages; awareness campaigns featuring Hispanic people; and expanded coverage on television and other media. “The more we [include] educational information in the popular culture, the better,” she says. “It reduces the stigma and fear and helps people realize it's not their fault.”
Elizondo acts only occasionally now (he reprises his role as Dr. Neven Bell in the upcoming Mr. Monk's Last Case: A Monk Movie), but he's grateful that his career gave him a platform for his advocacy work. And while he misses engaging with people on set, he doesn't miss the long hours. “The fact that my clock is ticking means I don't want to spend a beautiful day inside a dark studio.”
As for his efforts on behalf of those with Alzheimer's disease, Elizondo says, “I think Dad certainly would be proud. And Mom, of course, she'd be happy.”
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