A Guide for the Alzheimer's Caregiver

GUEST: Dr. Ruth Westheimer
VTR: 07/26/12

I’m Richard Heffner your host on The Open Mind.

And I usually introduce today’s guest simply as “Dr. Ruth”…Dr. Ruth Westheimer, known everywhere as the sex therapist whose many books as well as her incredibly frank radio, cable and television programs over the years have warranted her a formidable role in America’s “sexual revolution” of the past two generations.

But today it’s different. Today I want to talk with my friend about the advanced copy I’ve just read for her Guide for the Alzheimer’s Caregiver … by Dr. Ruth with Pierre A. Lehu. Ruth, seems strange. You’re known so well as a sex therapist, you have been for all these years, how come we’re now going to look and read, in a few months, Dr. Ruth’s Guide for the Alzheimer’s Caregiver.

WESTHEIMER: I tell you why. When I worked at Planned Parenthood of New York City, I trained paraprofessionals … Black, Puerto Rican, people in East Harlem, who had never worked before. So I knew … and I did a good job because they all got better jobs after the program ended.

I knew how to train people with enthusiasm. I have a few friends and I’ll tell you very fast why this book came about.

I have a friend who’s a famous physician in Boston, whose wife has Alzheimer’s … it’s getting worse and worse. And somebody told him that he has to retire in order to take care of his wife.

When I heard that I called him and I said, “You are going to lose me as a friend” … in my very serious, authoritarian, German way … “if you dare to leave your job. You have to continue working. You can work a little less … you need help at home”. And then I said I need to write a book … the caretakers of this horrible disease, of dementia and Alzheimer’s will run out of steam, they will run out of good will and they will run out of being able to be productive if they don’t take care of themselves.

So I used a few … I have a few friends right now whose spouses have that terrible disease.

I decided I have to something. I has nothing to do with sex. It has something to do with this relationship between people. If it’s the people who are family or if it’s people who are being hired. They have to learn how to take care of themselves in order to be able to take care the other person. Otherwise, after a while, they become depressed.

So I’m not a psychiatrist, I just give basic, common sense advice. Somebody like you could say, “Everything I read here makes sense”. It’s common sense, that’s what I’m after.

HEFFNER: Ruth, that’s perfectly true. I’ve read the pages. I’ve read it through and everything does make sense. It makes a kind of sense that leads me to wonder, how come I haven’t read this before? How come there hasn’t been this kind of guide before? You know, I was …

WESTHEIMER: You are wonderful. That’s the best thing you could tell me.

HEFFNER: Well, I was reluctant to do a program on this subject because I said to myself “Ruth … Ruth’s a sex therapist …” and I read it and you know that I called you and said, “Ruth I want to do the program. I want to do a program about this book”. How could it be that commonsensical?

WESTHEIMER: MmmHmm. Now I do have a lot of common sense. I don’t’ know where it came from because I’m four foot seven, I’m still four foot seven … because I was alone, I was an orphan, I had to take care of myself. I had to see the world in a way that no other child should ever see that again … by having parents being killed.

I do have a good sense of common sense. Now, something in that book that I did not write, but I’m telling you … first time that I’m talking about the book … I also was concerned … the caretaker, the family caretaker … for example, the husband or the wife … what are they going to do with their sex lives?

I didn’t say here anything. I didn’t say “go out and find a prostitute, I didn’t say go out and find a girlfriend, I didn’t say … but I’m implying … make sure you masturbate. But I don’t say it.

HEFFNER: I thought you did, by gosh and by golly …

WESTHEIMER: Not so openly … but you are brilliant and you have read hundreds of books for your interviews and you are a smart man … so you’re getting it … very fast … that I say you have to take care of yourself.

So, since I am a sex therapist … taking care of yourself doesn’t just mean to, to eat out from time to time, to go to a movie … to make sure that you develop relationships with friends that are good for you, but it also means a little bit, take care of your sexual desires and sex drive.

So I, I’m hiding it a little bit. But besides that, we don’t know why we have … some people speculate that it’s because people live longer … we don’t really know much why we do have suddenly so many people who don’t remember.

One of the things they do remember, which is very interesting for me from where I come from … they can remember their childhood, they can remember songs their mother or their father or grandmother sang to them. The Alzheimer patient.

HEFFNER: Right.

WESTHEIMER: So the people who take care of them, have to know that. And they have to try to use that. So I’m thinking this is a wonderful contribution of somebody, like me, to say “make sure you take care of yourself.”

HEFFNER: What do you mean, precisely, by take care … how can you take care of yourself? What are the difference ways?

WESTHEIMER: Okay, the different ways are … that you cannot feel guilty if you have an Alzheimer’s relative and you go to the theater or the concert or the movie … you have to say, “Dr. Ruth says, in her guide, that I have to do that” … without feeling that you abandoning somebody.

You also have to start new relationships. Relationships don’t have to be sex. I’m not saying bring somebody into the house to have sex. But you have to start new relationships.

You have to do something that makes you wake up in the morning by looking forward to that day and no dreading that day because you are inflicted right now with a member of your family who has that dreadful disease.

HEFFNER: Ruth, you’re … I remember Max Lerner … saying to me once when I asked him how did he describe his philosophy … he said, “I’m a possibilist”.

WESTHEIMER: (Laughter)

HEFFNER: You’re a “possibilist”.

WESTHEIMER: I like that.

HEFFNER: It was a great, great expression on his part. But I wondered as I read the book, as carried along by it as I am, as I was, as I read through, through it whether it wasn’t that smile of yours, it wasn’t that indomitable spirit of yours, it wasn’t … it was just whistling in the dark. Can it possibly … can you possibly care for yourself?

You write, “How to care for your loved one without getting overwhelmed and without doing it all yourself.”.

The implication is you’re going to be whelmed, but you’re saying that you can’t be overwhelmed.

WESTHEIMER: Right. But you have to use other people. Sometimes it has to be people who are going to do it because they are part of the family; sometimes it has to be people who are doing it because of money. Because of … whatever it is, you have to realize as much as you like that partner of yours and as much as you don’t want him or her to be hospitalized … not hospitalized … but institutionalized …

HEFFNER: Institutionalized.

WESTHEIMER: … that you have to take care of yourself without feeling that you are selfish. You have to say, “Thank God … I’m healthy, I’m alive, I can take care of that person, but I have to take care of myself”.

And it does fit into my whole philosophy of life. Because from all of my experiences there is something in me that said “You have to take care of yourself by being interested in life and by going out.” Not, not … you can’t sit there and say, “I’m always tired”.

I have to tell you something, Richard. Anybody who says to me “I’m tired”… I say, “I have no time for tired people, good bye”. So that, that’s what I’m after. I’m after giving people a little bit of a push … of saying, “You have to take the energy and you have to do something about it.”

HEFFNER: You used the word just before … guilt.

WESTHEIMER: MmmHmm.

HEFFNER: How large a component of guilt or to what degree does guilt play a role when you begin to think about institutionalization?

WESTHEIMER: MmmHmm. Tremendous. Tremendous. Now I’m not a psychiatrist. I’m not a psychologist in that sense that I could analyze, but I know … because I’m 84 … and you know that there is a tremendous amount of guilt which is not just having to find an institution, but the guilt is … that’s an interesting thought, I never thought about this … the guilt is how come I’m not afflicted?

And that … I never thought of that … that has to do with my life. How come I was saved? How come I was on the “kindertransport” being saved from concentration camp while one million and a half children … Jewish children … were killed.

So that issue of guilt … more psychologists and psychiatrists really have to find out how we can help people.

Because if you feel guilty, there is nothing that can be done for you. If you feel guilty because you have to do a step that you didn’t predict … there is nothing that somebody like me can do with you. You will be consumed by that guilt until you die. I don’t want that to happen.

I want people to say, “Let me make the best out of every day even if it is two hours a day, doing something for myself. If I can accomplish that, then I have fulfilled one of those obligations of my life to make a dent.

HEFFNER: Ruth, you may reject this. I felt as I read through the, the book … that it is a guide to a certain economic class.

WESTHEIMER: That’s true. Look, that’s true, that’s reality. I know if somebody’s very poor they can’t hire somebody. With all of the good intentions, if somebody has lost their job, they cannot go out and hire a caretaker. But then I’m saying … “True, I can’t help that reality right now, but you can draw on a neighbor, you can draw on somebody that maybe you once did a favor … you can draw on somebody where you can say, I don’t know, a college student, a high school student, where you can say “If you have time once a week, it would help me if I could go shopping once a week … downtown. Something.

So, not … no question that I’m thinking in terms of caretaker of people who can be helped … by insurance, by whatever is available.

For those people where it’s not available … they have to find, they have to be very, very clever in finding somebody that would say “Once a week, 2 hours, I can do that. No money.” I believe in that.

HEFFNER: Well, you, you emphasize that without saying up front …

WESTHEIMER: MmmHmm.

HEFFNER: … this is a book for upper middle class people. You do say tap the obligations to you. You’ve made friends, you’ve done things for other people, now is the time for some, some return.

But we’re talking about a situation that frequently goes on for some time.

WESTHEIMER: For a long time.

HEFFNER: Considerable time.

WESTHEIMER: Right. And this idea that some … that there is no … that there’s no hope … that’s what I wanted to make sure that I’m not somebody who says “They’ll get better”. They won’t get better.

So people have to be realistic. The friends that I have who have spouses with Alzheimer … its … it gets worse. It’s not a question of getting better. But there are … sometimes little, little lights. Like one friend of mine sings with his wife the Broadway tunes that she likes.

She has Alzheimer’s. I don’t know if she recognizes me when I come. She smiles, I go to visit. But I hear him singing the Broadway tunes that she likes … knows all of the words.

So people have to find something that is positive in order to be able to survive that.

HEFFNER: But, you know, going back to the question of guilt … and without doing it all yourself, without getting overwhelmed caring for your loved one … I wondered as I read it … I … the thought kept coming back, “Look, Ruth has always tried to free us to participate in our sexual lives without guilt … decently, with concern … but without guilt.” Have we built a society in which taking care of loved ones this way is just too damn much?

WESTHEIMER: It’s a difficult …

HEFFNER: Have we built a hedonistic society?

WESTHEIMER: It is a difficult, difficult question. Because on the one hand you want to say to people, live your life the fullest. How can you live your life the fullest if your partner is deteriorating day by day? Can’t … eventually can’t go in the bathroom.

So there is no question that, first of all, we need more help. Society has to stand up and say “Here is something …”, you know many years ago I didn’t know what Alzheimer’s … I didn’t know … I thought some people, you know, become very old and, and don’t remember. But we know much more today about it. Hopefully that they will be able to help people.

HEFFNER: Now, you raise a question that I think is very important. Did the atmosphere change? Did … is it just that we’re growing older? Wasn’t this with us all the time, though perhaps called something different? Where are we …

WESTHEIMER: I have to …

HEFFNER: … in this?

WESTHEIMER: … tell you … you and I have to go and find a group of scientists who, who will help us with that. Because I can’t answer it. I read what, what’s in the press. I read about the deterioration, I see, see all of those pictures of the brain. I can’t answer it, I don’t know.

Some people say because we are getting older. But maybe that’s not the … not the whole answer. I’m not even speculating if it is a question of people having had good relationships or not. I’m just thinking about that right now.

What is it between, let’s say, a couple that, that, that will permit the partner to be a better caretaker if they had a good life and by “good life”, I don’t mean a honeymoon all the time … but by being good friends and by being … having companionship. I don’t know.

I hope this book is going to raise those questions. That people are going to talk more about it.

HEFFNER: I’m sure they will, just as your books led people to talk more about sexuality.

Ruth, question … you go to Israel quite often. In that small, self-contained country … how is Alzheimer’s dealt with … differently?

WESTHEIMER: I don’t think so. It’s a, it’s very much a Western type country, except in some families it’s still hidden. You know that some … some years ago when there was a child that was not normal …

HEFFNER: Right.

WESTHEIMER: … you didn’t know about it. They hid it.

HEFFNER: Right. Right.

WESTHEIMER: They put it in a room some place when people came to visit, nobody knew about it. I think that’s what’s happening in the … in, in Israel and also here. Maybe less here now because of people talking more about it. So I do … I’m not thinking that it’s less in a country like Israel. But I think that in Israel maybe, maybe the family cohesion is stronger because people are not moving from California to, to New York …

HEFFNER: Right.

WESTHEIMER: … they’re sitting in the same place. So maybe it’s easier to take care of somebody like this. And also easier to hid somebody like that … who has that, who has that disease.

HEFFNER: The psychology of the kibbutz … any relationship, do you think?

WESTHEIMER: How interesting. Look when I lived on a kibbutz …

HEFFNER: You didn’t like it.

WESTHEIMER: Nope. I thought I’m going to live my life because this … in 1945, ’46 and ’47 before I went to the Haganah … I thought you need to work the earth, you need to be in agriculture, that Jews need a homeland so that it will never happen again that there’s no country that accepts them.

I did … after a year and then another year … I did not like collective life. I’ve had that now … in the orphanage and on the kibbutz and I said “no”, I need to be able to decide for myself what I want to do. And not for a collective to make a decision and, and over my life.

So there’s no question that I … I’m very upset in terms of the kibbutz because the older people, the ones my age … who really worked day and night to build that country, as you know, there’s not, not such a happy ending.

Because the kibbutz now is not a kibbutz anymore and some of the older people … Alzheimer’s or not … are being pushed out. Very, very sad. I would have never thought that this could happen, that people who built the country, who worked from morning to night are going to be told, “We don’t have enough money to support you. You have to move.” Very, very sad. There are some films about it. One man had a heart attack because he was told … and I can believe that … because it’s under a different story.

So I hope that this book gets translated (laugh) Hebrew and then I’ll go and I’ll talk about it. Of the obligation of the community towards the individual.

HEFFNER: Ruth, people were willing to talk about sex. Do you find people willing to talk about …

WESTHEIMER: I hope that I’ll be one of those people who will kind of push that we have to talk about it. We can’t afford to hid it.

There’s a friend of mine in Las Vegas who has now built a tremendous hospital because his father had Alzheimer’s. And Larry Ruvo and I help him … I did some fund raising for him. So I think that will happen more and more. There will be more and more centers of people saying, “We have to do something about it”.

And I hope that that will also translate into other countries and into Israel.

HEFFNER: Of course, that doing something about it means institutionalization.

WESTHEIMER: It … only if, if necessary … or help in the home. But institutionalization has to be one of the sad outcomes. Because when you visit a place like this, you walk out very sad. Not depressed. But sad. You get out of it, again, because you go for dinner or you go to the opera … but you walk out very, very sad.

HEFFNER: There for the grace of God …

WESTHEIMER: Yes. Yes. There .. thank God and therefore for the grace of God, look how you and I can converse and look how you and I can still make a dent and change this world. A friend of yours always talked about tikkun olam …

HEFFNER: Right.

WESTHEIMER: Levine from Teachers College.

HEFFNER: Arthur Levine.

WESTHEIMER: Arthur Levine always talked about “we repair the world.” I think part of my repairing the world, in terms of sex, that’s one thing … I will never stop talking about sex.

HEFFNER: No, I can’t imagine you will.

WESTHEIMER: God forbid. However, part of repairing the world is to say “We have a problem here, let’s deal with it.”

It’s the same … when I started to talk about AIDS patients. I didn’t see depressed, I said, “You have to use condoms. You can’t have sex with somebody that you don’t know. You can’t have unprotected sex.”

And I think the same fervor and the same big mouth that I have, with the accent, is going to happen here.

HEFFNER: Ruth, you’ve talked about a couple of people, your friends who find that their husbands, their wives afflicted with Alzheimer’s. They talk about it?

WESTHEIMER: They talk about it because I told them I’m doing the guide.

HEFFNER: Ah.

WESTHEIMER: So it’s not that they just talk about it by saying “how sad and how awful” because that’s not going to help them. But when I said I’m doing a book and you are going to get a copy, then … I interviewed them, I interviewed somebody whose mother had Alzheimer’s for a couple of years and who just passed away. And some of things in terms of what you were talking about … maybe he feels he didn’t see her often enough. And even so he took good care.

And you are right … the ones that I talk about are people who have the means to take care. So we now have to transfer that to those people who don’t have the means.

HEFFNER: And this coming at a time when we seem to be pulling back on what government will do.

WESTHEIMER: Absolutely, we can’t even say about, about government … we have to say we have to help, to stand up, be counted and do something.

HEFFNER: And you …

WESTHEIMER: I don’t want anybody to sit back and say, “This government is going to have … or this government …” I want people to say, “let us do something about it”. By talking on television about it, like you’re doing.

You’re making such a serious face. You and I we have to talk about sex again so that you smile. (Laugh)

HEFFNER: You, you (laugh) …

WESTHEIMER: (Laughter)

HEFFNER: You think of a problem and you smile. I think of a problem and I frown.

WESTHEIMER: Right.

HEFFNER: And that’s the difference between us.

WESTHEIMER: Right.

HEFFNER: But that is what leads me to thank you so much for coming back again to The Open Mind. Dr. Ruth, you’re wonderful.

WESTHEIMER: Thank you. Any time.

HEFFNER: Bye, bye, dear …

WESTHEIMER: (Laughter)

HEFFNER: And thanks, too, to you in the audience as well. I hope you join us again next time. Meanwhile, as an old friend used to say, “Good night and good luck.”

And do visit the Open Mind Website at thirteen.org/openmind to reprise this program online right now or to draw upon our Archive of 1,500 or so other Open Mind and related programs. That’s thirteen.org/openmind.

  • deb donofrio

    Thank you Dr. Ruth. Once again you remind me to take care to find what keeps me smiling! I have a wonderful vibrator and I play my husband’s favorite music and we dance! We are both 57. The last 7 years have been full of hardship and new beginnings. Some refer to this disease as the long road to nowhere. I call it the long road to somewhere else. Every morning I take a deep breath with my hand on my heart, just breathing in the present moment, the only moment that matters to us right now, and I greet the morning with peace and gratitude. I can not wait to read your book. Of all the alzheimer’s books on the market these days my favorite continues to be “Learning to Speak Alzheimer’s by Joanne Koenig Coste’. She is trying to change the face of early on-set alzheimer’s facilities. You two would be good friends. Best, Deb Donofrio

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