Latinos & Alzheimer's: Hector Elizondo speaks out.
From the hills of Hollywood to the theater stages of New York, actor Hector Elizondo has impressed audiences nationwide with his presence and talent. A proud Latino and veteran of over 80 films, Elizondo has carved a distinguished place for himself in the entertainment industry.
But there are many facets to Hector, and his sense of awareness and his commitment to the community are among the most notable. Recently, the brilliant actor took time from his current role as Dr. Neven Bell in the hit television series Monk to travel America and encourage both Latinos and Anglos to get better informed about the diagnosis and treatment of Alzheimer' Disease, a condition that afflicted his mother, and by extension, his entire family life. We met with Hector and Dr. David Crumpacker from Baylor University Center at the Ritz Carlton in Dallas to discuss the crusade that they passionately believe will help others better cope with the disease.
Latino Leaders: Did your family find out that Alzheimer's runs in the family?
Hector Elizondo: They didn't know what it was, and whatever it was they weren't going to talk about it, because it was too close to mental illness for their comfort. After my mother was diagnosed, that's when I first started to hear about "Titi Maria" and other women in my family who had passed away from similar symptoms. That's when I started connecting the dots, and when I first heard about pre-senile and this dementia business. I knew then that 'we weren't in Kansas anymore, Toto.' This was clearly a problem in the family, but it was kept pretty hush-hush.
LL: When did you start noticing signs that something wasn't right?
HE: In retrospect, we now realize that we saw the first signs of something being wrong about 10 years prior, but we didn't recognize them. They were very subtle at first ... We thought mom was just nervous. She was still mourning her brother's death during the Second World War, etc. We attributed it to many things, stress of one kind or another or the burdens of life, but never to a degenerative disease.
LL: What made you realize that something was truly wrong?
HE: She started isolating herself even more from her then small social circle. When she lost her way in the neighborhood; that was a real red flag. She didn't know which way to turn, and this was a neighborhood she knew like the back of her hand. Twice, she wound up in a police station because a nice policeman found her at a corner looking confused. One thing led to another, and luckily she had identification on her ... but that was a big red flag. I said to my dad, 'Papi, there's something wrong', but he assumed that she would get better.
LL: How much information was available on AIzheimer's and dementia when your mother was diagnosed?
HE: There was none, as far as we were concerned. It wasn't available, and culturally it wasn't talked about either. It was something that wasn't shared... Once she was put in the hospital, the diagnosis was pre-senile dementia. The progressive nature of the disease was not explained to any of us ... and the doctors didn't give us any more information.
LL: Who was your mother's primary caregiver?
HE: My father, being a man of his time and his culture, took it upon himself to care for her twenty-four/seven, but he was completely unprepared. They were in their sixties or early seventies, so you can see that the ultimate outcome of that situation wasn't pretty at all. We were living in the neighborhood at the time, so I watched it all happen.
LL: Why did your father choose to not seek help?
HE: Culturally, he felt it all had to be partially his fault somehow ... that he must be getting punished for something. For what, who knew? Reaching out for help, to my dad, was a sign of weakness.
LL: What were the lasting effects on your dad as her caregiver?
HE: The last year was awful. The last year, in essence, she wasn't there, but they kept her alive. She had no memory, no speech, nothing. She was like a cucumber strapped to a chair; that's why I stopped going to visit her. My father dutifully went to visit her, and it was that experience that ultimately destroyed him. After that he had a complete nervous breakdown, and he went into treatment for that, came out, and rebounded. She was still alive and eventually, around one and a half to two years later, his body just deteriorated ... His whole body just collapsed and, ironically, he died before she did. Subsequently, I found out that's not too unusual.
David Crumpacker: Caregivers tell me they watch their loved one develop their whole lives, and to then watch them lose it day by day by day is a very painful thing
HE: Especially when you are not prepared for it, when you have no education in that area ... It consumes your life. It's a major major problem. That's why, in many cases, professionals are better quipped to deal with it, better than even the family.
LL: What are the differences, if any, between Alzheimer's and dementia?
DC: For practical purposes, there are no differences. For the readers and the caregivers, no difference at all. There are academic differences that we discuss. Alzheimer's is a type of dementia, and the most common type of dementia. It is a progressive dementia associated with age. But it actually is a disease of younger people.
LL: What factors influence the probability of getting Alzheimer's?
DC: Age is one of the most common variables, and the most important. It is the only illness in medicine that has a direct linear progression associated with age. The older you are, the greater the chances of getting it are. It also definitely runs in families.
HE: That certainly was the case in mine. That we know of, three of my mother's sisters had Alzheimer's and died from it. They kept it very quiet; they kept Aunt Mary "in the closet" so to speak. That was the way it was done. I think it had been in the family for quite a while, but it was nothing that was talked about. That's the bubble I want to burst, that taboo. 'Whatever happens, don't take it personally'.
LL: Why do Latinos have higher rates of Alzheimer's? Do they have a genetic predisposition towards the disease?
DC: Minority communities don't access the resources that we have. There's probably not a genetic component to Alzheimer's. I think the point is that it is mostly the lack of access to care and not taking advantage of the resources that there are that makes it harder.
LL: Hector, this is clearly a very personal, touching subject for you. Why did you choose to pursue this approach to educating people?
HE: When I heard the figures, I said 'I have to get involved'. If this is an opportunity and if this is a platform, then very good, this is how I will do it. I want to be broadcast. I don't want to do it just locally. I want to make sure that the whole country knows. Also, I want to let people know that they can do something about it. There's no cure, but you can help yourself to a great degree. And I also want to let people know that Latinos have Alzheimer's to a higher degree than other groups.
LL: What resources or advice would you give to the general public or those struggling with Alzheimer's?
DC: The Alzheimer's Association is a wonderful resource. Also, The 36-Hour Day is a wonderful book to read. As the name implies, it is a thirty-six hour day, eight day-a-week job to take care of a loved one. Being proactive and going to the doctor and asking helps. When I talk to family practice staff I tell them, 'Everyone you see over 60 is a candidate for a memory test and a handshake test. To the readers, I'd like to say: come forward and say something to the doctors, like 'I'm worried about dad's memory', or 'I'm worried about my wife's memory, can you take a look at it?' or 'when should we start getting worried?'
I frequently tell people that if a patient comes in worried about their memory, more likely it is due to depression, stress, or anxiety. If a family brings a loved one in because they're concerned about that person's memory, then it's more likely Alzheimer's disease. The rule of thumb here is: 'If you remember that you forget, then it's not Alzheimer's. If you forget that you forget, that's bad.' Forgetting that you forget is a bad thing, and also a big red flag.
HE: Forgetting where you left your keys, that's common. Forgetting what your keys are for, that's bad. But something can be done about it. Exercise, exercise is number one. They've found it could be as simple as that.
LL: How has this journey affected you personally, Hector?
HE: I'm a private fellow, but it's the right time. It's also a way of expunging any residue of guilt for not being able to do more when my parents were going through what they were going through. I love learning, so it's a wonderful opportunity to find out about this and to reluctantly go over the past.
Realizing how resilient I was, being reminded of how young I was, and the fact that I ultimately have come to accept that I did the best I could, that's a big deal for me. What was really emotional for me was to see my parents' photographs in magazines and on television [discussing the disease]. I recall my sister asking me, 'Did you see mami and papi in the magazine?' She was actually instrumental in me deciding to do this. I asked her 'So what do you think?' And she said, Do it. Now!'
LL: How will this journey make a difference in others?
DC: The fact that Mr. Elizondo is coming out and talking on television, putting these pictures out, and modeling this behavior is a powerful thing. If other people see a prominent figure in the Latino community doing this, then it must be ok for them to try and seek help.
LL: What do you hope to achieve through this campaign? What message would you pass on to other Latinos?
HE: Awareness, awareness, awareness. Seek early diagnosis and get rid of the stigma somehow. It's not a sign of weakness to ask for help. Beware of the red flags. Benign signs of forgetfulness may be something more, and it doesn't take any effort to check and make sure. It's as simple as that. If I can only achieve that, then I've accomplished something.
COMMON SYMPTOMS OF ALZHEIMER'S DISEASE
* Loss of memory that affects daily life
* Difficulties in doing familiar chores such as using a microwave
* Problems in naming common objects such as a watch or pencil
* Getting lost easily, even in familiar places
* Poor or reduced judgment
* Problems with abstract thoughts
* Frequent loss or misplacement of items
* Changes in humor, behavior, or personality
* Loss of interest or lack of initiative for common activities
For more information please visit: www.CaringForAIz.com
Interviewed by Wendy Pedrero at the Ritz Carlton Hotel in Dallas, Texas on December, 2008
Story by Kristin Schneider
Photos for Latino Leaders by Steve Gallegos
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|Title Annotation:||Open Interview|
|Date:||Feb 1, 2009|
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