By Tamekia Reece
You probably know Hector Elizondo from movies and television shows such as Pretty Woman, Chicago Hope, Georgia Rule, Monk and, most recently, New Line Cinema’s Valentine’s Day. The Emmy award-winning actor has appeared in over 80 films and TV shows and has been acting for more than 40 years. He’s in demand today as much as ever.
What you may not have known is, despite his busy schedule, Elizondo makes time for one of the most personally satisfying roles of his life—that of an Alzheimer’s educator. Elizondo has toured the country with Alzheimer’s specialists promoting awareness and sharing the story of his own experience with Alzheimer’s—the disease that ultimately claimed both of his parents’ lives.
“There’s Something Wrong with Mom”
Back in the 1960s, when Hector’s mom, Carmen Medina Elizondo, first began showing symptoms of what today would likely be diagnosed as Alzheimer’s, there was very little information about the disease. “Those days were the dark ages of dementia,” Elizondo says. “They didn’t even know what to call it.” Because it started off as simple things, like her forgetting where she put her keys and forgetting names, the family did what many other families do—they chalked it up to normal memory loss that occurs as people age. “We saw the symptoms but didn’t know what was wrong. We just thought mom was getting forgetful,” he says.
Eventually she began losing herself—getting lost in the neighborhood where they lived, even though she knew it like the back of her hand. “More than once my father [Martin Echevarria Elizondo] got a call from police officers at the precinct,” Elizondo says. His mother would take the bus, forget where she was going and end up getting off somewhere and wondering around until someone realized she was lost.
“After that happened two times, it should have been a big red flag. But in those days, you didn’t pay much attention to that. You say, ‘Oh, well, mom’s getting forgetful,” Elizondo says.
Those episodes of forgetfulness kept piling up and the family realized it was something more. “All we knew was that something was wrong with mom, and something had been wrong for quite awhile, and it was getting worse and worse,” he says.
Her descent into memory loss was a hard hit for the whole family. “It was progressive, it was slow, she was losing her life backwards. It was like going through a deep, dark tunnel for all of us because we didn’t know what it was,” he says. “The worst thing about it was not knowing, the mystery of it.”
A Caregiver’s Pain
As his mother’s memory continued to decline, Elizondo’s father took over the responsibility of being her caregiver, and was resistant to help from other family members. “That’s a man thing,” Elizondo says. “He insisted on doing it because that’s what a responsible Puerto Rican man does.” But there was also a negative side to that kind of stance. “They didn’t know when to give up,” Elizondo says. “Dad didn’t know it was okay to say, ‘I can’t handle this. You’ve got to help me. I really need a day off. I can only do this eight hours a day.’”
Elizondo’s dad wasn’t prepared for the physical and mental toll of being a full-time caregiver. He eventually had to leave work because caring for his wife was so tiring and overwhelming that he couldn’t perform his job, there were bouts of anxiety and distress, and he couldn’t eat properly. “We checked in with him everyday to make sure everything was cool but there’s just so much we could do. My wife was working, I was working, my son was in school, my sister was working and my uncle lived far away,” Elizondo explains. Even worse, at the time, there were no organizations to help. “There were no services that came to your house to take mama away and play patty-cake with her for two or three hours and give papa a chance to take a nap or do some work at the office,” Elizondo says.
Those things ultimately proved to be too much for Elizondo’s father. “That’s what helped bring him down—no help, no information and no one to really pick up the slack,” Elizondo says. “I saw him age and get very, very sick.”
When Elizondo’s mother’s illness became more than they could handle, she was sent to a state hospital that didn’t specialize in dementia because, at that time, there was no such specialization.
“She was like a cucumber placed in a chair. She had no speech, no memory, no nothing, and she was incontinent,” Elizondo says. “It was like she had died a long time ago but her body was alive, which I think is a disgrace and undignified.”
Even after his wife’s hospitalization, Elizondo’s father still refused to take a break. “He’d visit her almost everyday, take her food and make sure they were doing the right thing at the hospital,” Elizondo recalls. The stress got to be so overbearing for Elizondo’s dad that he suffered a nervous breakdown and ended up in the same hospital as his wife. He rebounded from the breakdown, but the deterioration to his mind and body was lasting. He died about two years later in 1974—before his wife.
A Sigh of Relief
A month after his father’s death, Elizondo received an early morning call. “I was doing a movie at the time and thought it was a wake up call to get to work,” he remembers. Instead, it was his sister telling him their mom had passed. “I was greatly relieved,” he says. “We all were because there was not much left of our mother.”
Interestingly, his mom died on a day of special meaning for the family. “Before Dad passed away he said, ‘If I go before your mother, I’m going to call for her because I can’t be alone,” Elizondo says. She died on her husband’s birthday. After fifty years of being together on Earth, they were once again together, he says. “I guess he gave himself a birthday present.”
The Most Important Role
Decades after his parents’ deaths, and after Alzheimer’s became a common term and research of the condition exploded, Elizondo found himself reaching out to educate others about what he and his family didn’t understand at the time of his mom’s illness.
Elizondo speaks to anyone and everyone who is willing to listen, but says there are certain groups that especially need the message—the Latino and black communities.
“Unfortunately, there’s still a bit of a stigma and a mystery about Alzheimer’s in those communities,” Elizondo says. “They think it’s mental illness and something to be ashamed of.” In hindsight, he recognized this stigma in his own family when a few of his aunts each faced dementia. “As they became forgetful, because of cultural pressure, they were sort of put in the background,” Elizondo says. “These are Caribbean people, so everybody was loving and they were well taken care of, but they didn’t appear in public because it was a stigma against the family,” he recalls.
“People need to understand Alzheimer’s disease is not a mental illness—it’s neurological… and there’s no reason to be ashamed,” Elizondo says. “That’s why it’s imperative that caregivers have all the information they can about what this is, how to deal with it and who to go to.”
For many Alzheimer’s advocates, conveying those messages can be difficult when addressing populations that speak little or no English. “We need to make an extra effort to get the message out there through the different language radio stations, TV stations, print ads and online ads,” Elizondo says. And people who speak more than one language need to plug in more and help out by getting the information and passing it along to those who don’t speak English, he adds.
A Family Matter
Even if the message is relayed, another thing that may play a part in the diagnosis of an Alzheimer’s patient (and how overwhelmed the caregiver gets) is the strong sense of family responsibility many cultures possess.
Taking care of your own is great if you have an extended family and everyone is available to help, he says. However, most families don’t have that availability and it’s usually one person handling the bulk of the caregiving. “If you can’t handle it on your own, ask for help, whether it’s from family members, your church, support groups or medical facilities,” Elizondo says.
“If my father had more help and the information we have today, he would have lived for a few more years and I would have been able to take him to Spain, the one place he always wanted to visit,” Elizondo says.
Although he understands that most caregivers feel it’s their duty to take care of their loved one, Elizondo says it’s not your duty to kill yourself trying to do it alone. “If you need help, don’t hesitate to ask for it,” he says. “Make sure one tragedy doesn’t become two.”
Research indicates that African Americans may have a greater prevalence of dementia and Alzheimer’s disease than their white counterparts. Hispanic Americans face an additional barrier: many older adults speak only Spanish. But there are good resources online for African Americans and Hispanic Americans concerned about Alzheimer’s disease.
Resources for African Americans
- Alzheimer’s Association’s section for African American caregivers
- National Network of Libraries of Medicine’s African American Health Resources
- U.S. Department of Health and Human Services Office of Minority Health
- The U.S. Centers for Disease Control and Prevention’s African American Health Resources
- Alzheimer’s Association en Español
- Family Caregiver Alliance, El cuidado de los adultos con trastornos cognitivos y de la memoria (Caring for Adults with Cognitive and Memory Impairments)
- National Institute on Aging, Guía para quienes cuidan a personas con Alzheimer
Source: www.ALZinfo.org. Author: Tamekia Reece, Preserving Your Memory: The Magazine of Health and Hope; Spring 2010.