Talking With Hector Elizondo: When It Comes to Alzheimer's, Information Is Everything

The "Monk" star discusses the enormous toll his mother's Alzheimer's took on his father, and the many resources available to caregivers today.

Hector Elizondo

Actor Hector Elizondo knows Alzheimer's disease intimately. In 2002, he estimated that dozens of people in his extended Basque-Puerto Rican family had or had been affected by the disease -- his mother and four aunts, who had it, and all of their family members. Since then, a nephew and several friends have been diagnosed, raising the number of affected friends and family members into the hundreds.

But when Elizondo's mother, Carmen, was first diagnosed with Alzheimer's in the mid '60s, his family was clueless about how to deal with it and didn't know any other families who could help. Like teen pregnancy, Alzheimer's was hush-hush at the time, and there was little literature or support for its sufferers or their caregivers. With so little knowledge, Elizondo says, caregiving for his mother crushed his father, Martin Echevarria Elizondo, and exhausted him and his sister, too. Now, 40 years later, Elizondo loves to point out that there are many more resources to help a spouse avoid caregiver burnout .

It's no wonder, then, that Elizondo is an activist for the Alzheimer's Association . What is a wonder is how he finds the time: The prolific and versatile actor has appeared in dozens of TV shows and more than 80 films, including The Princess Diaries and Pretty Woman , and he's currently starring in Monk as shrink to the show's obsessive-compulsive homicide detective. Elizondo recently spoke with about his family's experience. Near the end of the conversation, he was joined by Dr. Alan Dengiz, director of geriatric medicine at St. Joseph Mercy Hospital and medical director of Huron Woods Alzheimer's Residential Center in Ann Arbor, Michigan. Dengiz offered advice about caregiver burnout, resources for caregivers, and the importance of an early diagnosis.

What were cultural attitudes toward Alzheimer's in the '60s, when you learned that your mother had the disease?

It was something people didn't talk about too much. There was an element of shame about it. Only much later did we really understand what it was. And there was no one to give my father a breather -- my sister and I would, but we were also trying to make our livings. In our case, there was no help, but now there is a lot available for family caregivers.

When it started happening to your mother, did she just seem forgetful?

Yes, she'd forget to turn the stove off, let the water boil away in the pot once too often. Looking back, the first signs of it were when she was in her mid '60s, ten years prior to her death. But during the last two years of her life, her deterioration accelerated.

What was it like for you when you first discovered that she didn't know who you were?

The disease is like throwing frogs in a pot of cold water and turning the heat on: They won't jump out; they'll boil slowly. They become accustomed to it.

It happened so gradually. But I remember the first time it was really heartbreaking, when I knew there was no coming back. I had taken her with me when I was doing a play, to give my father a break. She was trying to write a letter to him and she got as far as "Dear Martin, I love you so…" and then it trailed off in this childish way. She sat there with the note on her lap and the pen on the note, just staring into space. And I knew we were losing her.

Tell me what happened to your father as it progressed.

He deteriorated under the strain of trying to take care of her and not understanding what it was he was taking care of or how he should do it. He wasn't even sure if it was an illness -- it may have been some kind of curse from above, for some unknown reason. He always had hopes that she would snap out of it. At the slightest sign -- for example, when she would say something that was cogent, one line of a few words strung together -- he would say, "You see, she's getting better. It's that -- " referring to whatever it was that he was feeding her at the time. Or he'd say, "All she needs is to be distracted."

It came to the point of hospitalizing him for a nervous breakdown. And then, of course, we needed to put my mother in a home also.

How did his nervous breakdown manifest itself?

He stopped caring for himself. He was a man who was assiduous in his appearance, and that slowly started to go -- forgetting to shave, forgetting to change his shirt, losing weight rapidly. He became a shadow of himself; started to talk to someone who wasn't there. I finally had to take him to a doctor, who suggested that he go into a sanitarium-like situation, which was a state-run place, and it turned out to be a place that you don't want to put anyone. He was there for about a week, and then I got him out.

How did you handle your mother's disease?

It got to the point where I had to tell my father that I couldn't go visit her anymore because she was just a shadow, a husk of the person I knew. That was one of the most difficult aspects, and I didn't want to witness it. The essence of who she was, that was gone.

How old were you at the time?

I was in my early 30s -- young, resilient, and strong, but it also affected me deeply. I was working around the clock and taking care of my own family. It was trying. It didn't break me, but it certainly bent me.

How did you juggle your family's needs and those of your parents?

If my father had had support, or a community of caregivers, he would have had a break. It was the same for me. It was a juggling act, and it led to some stress and a lot of fatigue, and a little bit of resentment sometimes. That's also a natural part of it. No one explained to me that feeling a bit resentful is normal because you're human. You think that you're supposed to be dealing with this as an ultrahuman! It's enough to break anybody's back. I survived it somehow -- but barely, quite frankly.

What helped your father heal?

When he came out, we got him to go away with friends. He stayed there for two or three weeks. He needed peace and quiet and reassurance and some TLC, not the nerve endings of the city, especially the neighborhood that reminded him of his wife, whom he loved madly. And slowly, he started to heal.

Fortunately, when he returned, we lived in the same neighborhood, within walking distance from each other. So eventually, perhaps too late, he took care of himself because we took care of him. He was with us another three years, but those three years were still devoted to my mother. The irony is that he died first because all those years of strain broke him down.

Just before he passed away, he told me, "If I go, I'm going to call for your mother. I can't be alone." Of course, I said to him, "Oh, you're going to be around for a few years. We're going to go to Spain, we're going to do this and that, we're going to go bird-watching." He loved birds and music. And he said, "No, this is it." So he passed away and she passed away a month later, on his birthday. He gave himself a birthday present.

Dr. Dengiz, what can family members and friends do to help a primary caregiver to a person with Alzheimer's?

As Hector said, family members are busy and have their own careers. But still, if you have family meetings and people within the family understand the stress that's on the primary caregiver, they can find time to help give respite. There are also other opportunities for respite in most communities -- sometimes caregivers can use a residential assisted-living facility or a nursing home for a week, so that they can get that rest and that break. That might be all they need to be reinvigorated and be able to come back and do a better job. People who are caring for someone with Alzheimer's disease also need to see their own physicians on a regular basis to take care of their health.

There are so many more things that we know about and that we can offer people today. The Alzheimer's Association is really there to help the caregiver as well as the individual with Alzheimer's.

The other important thing to know is that we have medications for Alzheimer's now that we didn't have before. One of the newest is a patch that you can place on the skin daily, and it absorbs the medication slowly for a whole 24 hours. The meds aren't going to cure Alzheimer's, but they can really make the symptoms better, and that is often a huge help to a caregiver.

Would you say that depression is pretty much a given for caregivers of somebody with Alzheimer's?

Absolutely. I saw a couple like that recently. The wife has had Alzheimer's for many years and her husband is severely depressed. I'm having a hard time getting him to recognize that and an even harder time getting him to get treatment. Fortunately, I was able to connect him right away to one of the social workers in our area who works with Alzheimer's caregivers, and hopefully I can convince him to take an antidepressant in the very near future. Right now he does not want to hear about it, but sometimes it just takes reinforcing that kind of thing.

Guilt is still prevalent -- guilt that the caregiver can't do it and feels terrible about it. As time goes on, the person with Alzheimer's has more and more needs, so it's an increasing burden on the caregiver. And then they push themselves to the point that Hector's father did -- to the point of nervous breakdown.

People don't realize how many other people are also dealing with it. This is no longer the Dark Ages; caregivers need to recognize that other folks are going through it, too. I've found that when people talk about how they cope in support groups, they learn so much from each other.

And if someone says they don't have time to go to a support group?

I say, "Look, you can find the time. You have a neighbor or a friend or a church or a synagogue -- you have someplace where you can get those resources, and it may not cost you a penny to have somebody come in for an hour and a half while you to go to a support group meeting. What you'll get out of that support group is much, much greater than the time that you're away."

Hector, what is the main thing you wish you had known when dealing with all of this?

It all goes under the heading of information . Alzheimer's devastated my family mainly because we didn't know what it was. And it helped kill my father because he made the prime error of not taking care of himself. He didn't "put the mask on himself first," as they say on the airlines -- you know, in case of emergency, put the oxygen mask on yourself first, before helping others.

Know what it is, know the nature of it -- that it's degenerative. Know when it's time for Mother to be put somewhere safe, where she will be cared for, where we can visit her daily, close to where we live. And create as helpful an environment as you can for caregivers to take care of themselves. Give them that badly needed break and help them "put the mask on" themselves first. If there's a communal effort, a family effort, it can cement family relationships -- we got through this together -- and that's a great opportunity. If we had known what it was and what we had to do, I think we could have gotten my father through it.

Dr. Dengiz, do you have any final advice?

Get an early diagnosis. Find a physician who understands the illness. Family physicians and internists can be great at that, but if they're not comfortable with it, find a geriatrician or neurologist, somebody who has a real expertise in the area, and get treatment. There are medications out there for this illness, and everybody should have an opportunity to try one or two of them.

People will often hold off getting a diagnosis. They'll say, "This is normal aging. What do you expect at my age?" But if you're in the dark about it, the disease will get ahead of you, and then, as it really gets ahead, you'll be totally unprepared. It's no longer as dismal an outlook as it used to be because even though we don't have a cure, we really do have a lot of things we can do. And we're going to have more opportunities and more medications that will be helpful in the future.