This is a partial transcript for The Edge with Paula Zahn, January 26, 2000.
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RONALD WILSON REAGAN, PRESIDENT OF THE UNITED STATES: My friends, we did it. We weren't just marking time. We made a difference. We made the city stronger. We made the city freer. And we left her in good hands. All in all, not bad. Not bad at all. And so good-bye. God bless you. And God bless the United States of America.
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ZAHN: President Ronald Reagan has a few nicknames — "Dutch," "the Gipper," "the great communicator." It's that last one that sort of rings with a bitter irony these days, since the former president who so eloquently delivered the famous "morning in America" speech suffers from advanced Alzheimer's disease.
Maureen Reagan is the daughter of the president and his first wife, Jane Wyman. She has taken on Alzheimer's as a cause, working closely with the Alzheimer's Association to raise awareness and, hopefully, find a treatment or even better, a cure.
I sat down with Maureen earlier today and asked her how difficult it was for her father to write his final letter to the American public explaining that he had Alzheimer's.
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MAUREEN REAGAN, DAUGHTER OF RONALD REAGAN: Well, I think it was a very courageous thing to do, but for him it was perfectly natural. It was not something he had to agonize over. He knew what was going to happen, and he wanted to be sure that it meant something to people and that he made it OK for us to talk about this disease, where people used to just whisper about it.
ZAHN: Why do you think people have been so uncomfortable talking about this disease?
REAGAN: Well, I don't think people really understood it. And this is really the first generation that has been in these numbers. And it is an age-related disease, and as our longevity increases, the occurrence of Alzheimer's will increase, as well. He was aware of this disease, was very aware of what would happen, but if this was any other disease, Paula, he would be out beating the drum, making people aware and making them understand what we have to do to help protect ourselves and what we need to do to find a preventive. And since he can't do it, that's what I do.
ZAHN: God bless you for doing that. When do you think your father realized something was wrong?
REAGAN: Well, he complained to his doctor in early in 1994 that he was feeling disoriented when he was in a strange place, like a hotel room he'd never been in before, that he had trouble figuring out where the rooms were and exactly what he was supposed to be doing. And so the doctor said, "Well, we're going to Mayo later this year for your annual physical. We'll do some checking," and that was when they were able to diagnose it in the fall of '94.
ZAHN: And did you ever notice anything before that?
REAGAN: Well, I did, now that I look back. And I've been collecting anecdotes from families around the country because there's a sort of a click of awareness. There's an almost singular event that seems to happen in a lot of cases months before the other symptoms begin to show up. And I want people to begin to look for that because there are interventions now and we can help a family. And the earlier we find it, the better.
In our case, it was a movie that he had made about which he was very, very passionate. And he had told me all these stories about it. And one night in late 1993, Dennis and I were having dinner with him. And I don't know how the subject came up, but it was about this movie. And I found myself telling him the stories, and he looked like he was hearing them for the first time.
ZAHN: And how nervous did you get at that point?
REAGAN: Well, I didn't get...
ZAHN: Was that just like an alarm that went off, and then you really started to think about it and then the...
REAGAN: No, it...
ZAHN: ... reality set in?
REAGAN: No, it really wasn't until later, when a friend of mine was telling me about her father, an engineer, a brilliant man, who one day didn't go to the office because he forgot how to tie his necktie. And it was several months before anything else showed up. And she said, "When I look back, I realize I should have known." And she said, "Did you have anything like that?" And I said, "Oh, my gosh. Yes, we did." And it was the first I had realized it.
So I call it the "click of awareness," and that's what I want people to begin to look for, not to be afraid of this disease, but to be able to utilize what we now know and the interventions that we have to be helpful and buy them some time.
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ZAHN: And more on how President Reagan is doing in just a moment. We'll be right back.
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NANCY REAGAN, FORMER FIRST LADY: Hello. I'm Nancy Reagan. Alzheimer's disease can change your life. It changed mine. Millions live with this illness every day, both victims and their families. The Alzheimer's Association and the National Institute on Aging are committed to help. If someone you love is suffering, please call the Alzheimer's Association. You're not alone.
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ZAHN: Former first lady Nancy Reagan on her husband's illness.
And I'm continuing my interview now with Maureen Reagan about the president's battle with Alzheimer's disease. Maureen writes in Newsweek magazine this week, quote, "Thank God for Nancy and the wonderful care she gives him." I asked her about the toll the illness has taken on her stepmother.
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REAGAN: I think it is a huge toll. It's a huge toll on caregivers. Anybody who has dealt with this disease as a caregiver to an Alzheimer's patient knows it's a 24-hour-a-day job. And there are no days off, and there are no days when it gets better. It's just watching somebody disappear before your very eyes and doing everything you can to create a stimulating and fun an environment as possible. And it just goes on 24 hours a day. Or as the book, famous book that was written, 36 hours a day. And it takes a terrible toll on caregivers. In fact, in some cases, we lose the caregivers before we lose the patients.
ZAHN: It is so devastating. And yet you go on to say that there are some bright moments and how important a sense of humor has always been to your father. And understand he is particularly delighted when you visit and you flash some, what, red-painted fingernails at him?
REAGAN: Red-painted fingernails!
(LAUGHTER)
ZAHN: And that...
REAGAN: And he laughs! He thinks that's really funny!
ZAHN: And at this point, are you able to talk to him at all? Does he recognize you?
REAGAN: Well, he's always seems very glad to see me, and I kind of try to slide in to whatever he's doing. I find that if you try to change the gears of an Alzheimer's patient that they just tend to pull away from you. But if he's eating his lunch or if he's watching television or taking a walk in the garden, whatever, I just sort of slide in. And then it's like I've just always been there.
ZAHN: Well, I'll tell you, I've talked with a couple of people who give you a great deal of credit for hanging in there with him. How tough has it been for you? You adore your father!
REAGAN: I adore my father. And I'm very sorry to see him go through this, but what makes it easier for me is being able to have this crusade and to know that this is not in vain, that maybe the reason for this was because we have to fight to find an answer, and maybe I'm the person that has to do that fighting.
ZAHN: And I know you've gotten great solace from being involved with the Alzheimer's Association. And earlier on, you made a point which I think is a very important point, that this disease takes an enormous toll on family members. How are your brothers and sister doing with this battle?
REAGAN: Well, everybody, you know, deals with it in their own way, and it's very hard. Some of it is you're able to get out and to talk about, and a lot of it is just internal and you can't get to it. You just have to live it.
ZAHN: And what kind of support can a group like Alzheimer's Association give you?
REAGAN: Oh, I'm so glad you asked! We have wonderful programs. In our chapters, we have support groups, and these support groups are not people who sit around complaining about what's happening to them. They're people who sit around with each other, usually on a weekly basis, sharing information, sharing ideas.
A woman was telling me at the last Alzheimer's board meeting that when her husband was finally bed-ridden towards the very end of his disease, that she used to bring helium balloons into the room. And he loved to watch them dancing across the ceiling in the bright colors. And she said, "I know it's not a very big idea, but maybe it helps somebody to know that there's something else you can do to stimulate the patient and to create a more fun environment." I mean, it's that kind of thing.
We have a safe return program. Alzheimer's patients tend to wander. They will just get up and go out the door. It can be in a split second.
And so we have a safe return program, which is an ID bracelet that's registered with the local police. So if something happens to that person, we can get them home safely.
A man in El Paso came up to me last fall. He had been recently diagnosed with Alzheimer's, and he had his bracelet on, and he wanted to show me. And he was very proud, and he said, "You know, sometimes when I leave home, I forget where I'm going, and I forget how to get back, but I know this bracelet's going to get me home."
ZAHN: In talking to you, I can see an feel the enormous passion you have for this cause, and I know how committed you are to spending time with your father. How often do you actually get to see him?
REAGAN: I get there about every two weeks. We live in Sacramento, which is about 400 miles away, and with a teenage daughter and a few other things, you know...
ZAHN: Sure.
REAGAN: I try to get there every couple of weeks.
ZAHN: And do you notice many changes from visit to visit?
REAGAN: Yes, not so much every visit, but about every month or so I notice changes. And the latest is that he's losing some motor skills. And that's the problem with Alzheimer's is it isn't that you just forget your wedding day, or when your kids were born and things that are extremely important, but those are memories.
The brain tells the body everything to do, and eventually it will tell the body to stop swallowing, and it will just stop telling the body to breathe. And so that's why it is a life-threatening illness. And I think people have to realize the seriousness of this so that we can deal with it effectively.
ZAHN: I know that both you and your father got enormous enjoyment out of making jigsaw puzzles together. I guess you started off with 300-piece sets. Then you went down to the 100-piece sets. Is he able to do...
REAGAN: Well, we worked our way down gradually, yes.
ZAHN: Is he able to do any of that anymore?
REAGAN: No, unfortunately not. We actually — the reason we went down was because we wanted puzzles that we could finish in one day because there was a great feeling of accomplishment to that. And so as the disease progressed, it was important that we get a little smaller puzzles.
But they were always outdoor scenes, horses in meadows and farm yards and jungles and all kinds of things with wonderful animals and green outdoors. And then we would go through and talk about the picture and what the animals were and everything. And he just loved it. He had a great sense of accomplishment with that.
ZAHN: And I'm just curious because I know each Alzheimer's patient is different. Does he sense a real frustration now that he wasn't able to do those things he could do just maybe even a couple months ago?
REAGAN: No, I think we're beyond that. We did go through a period of frustration. That is perfectly normal. But my father is a very spiritual person and very accepting. You know, he's one of those people who believes that God doesn't give you more than you can handle. But as a friend of mine said recently, perhaps God has me confused with somebody else!
ZAHN: All right, Maureen, before we let you go, one final question. There's been so much talk about what your father's personal and political legacy might be. If you were to write the definitive piece, what would you say?
REAGAN: Ronald Reagan, by sheer force of personality, put us on the road to world peace, the road to economic security, and made us believe in ourselves.
ZAHN: And he's left some lovely children to do God's work, as well. Maureen Reagan, as always, good to see you. Thank you very much for joining us, and our best to your father and the rest of your family.
REAGAN: Thank you, Paula, very much.
ZAHN: Take care.
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