A few months after their 50th wedding anniversary, Helene Berger’s husband Ady was diagnosed with Alzheimer’s disease. When the doctor gave him the news, Ady replied, “I don’t want to live anymore.”  From that moment on, Helene vowed to find creative ways to make their lives as joyful as possible for as long as possible.  It wasn’t always easy.  But Helene learned a lot along the way, and she took notes which became the basis for her new book, “Choosing Joy; Alzheimer’s: A Book of Hope.”  Helene tells us how she and Ady worked together to communicate in a positive way, which not only led to fewer instances of Ady’s inappropriate behavior but allowed them both to feel empowered.  She shares the mantra she developed for herself when Ady asked her the same questions over and over, and she tells us how she went from giving unpleasant aides the benefit of the doubt to sending them packing.  We all have the power to respond to mental or physical decline in a positive way.  Find out how in Helene’s book, “Choosing Joy; Alzheimer’s: A Book of Hope.”

Helene’s book: “Choosing Joy; Alzheimer’s: A Book of Hope”

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Helene Berger and her book "Choosing Joy - Alzheimer's: A Book of Hope

INTERVIEW TRANSCRIPT:

JANA – A few months after their 50th wedding anniversary, Helene Berger’s husband Ady was diagnosed with Alzheimer’s disease. When the doctor gave him the news, he replied, “I don’t want to live anymore.”  From that moment on, Helene faced her husband’s diagnosis determined to find creative ways to make their lives as fulfilling as possible for as long as possible. It wasn’t always easy, but Helene learned a lot along the way. Fortunately for us, she took notes which laid the foundation for her new book, “Choosing Joy; Alzheimer’s: A Book of Hope.” Helene Berger joins us from Miami to tell us how her husband went from the depths of despair to engaging with life, and how both of their lives evolved from “bearable to pleasurable” in Helene’s words. Helene Berger, welcome to the Agewyz Podcast.

HELENE – Thank you.

JANA – So you grew up in Brooklyn, you got married at age 19. Tell us about your early life together with Ady, just to put this in context for our listeners.

HELENE – Ady and I met in 1954, at the Lido Beach Hotel.  I had just completed eight weeks of intensive summer stock at Tufts Arena Theatre, I was sitting near the pool and wanting to be alone, and wanting just to become whole again. And my mother came over and said, Helene, that nice young man keeps coming over to talk to you and you’re not giving him the time of day. And with that, she went over to Ady, who I hadn’t really met, and invited him to lunch with our family. The rest of sort of…

JANA – The rest is history.

HELENE – But what happened was, when we had our first official date in Brooklyn, and he came and I was still upstairs, he started playing the piano – Mozart, Beethoven, Rachmaninoff.  And my mother was head over heels in love with him before I was.  That’s how we met.  And nine months later, we were married. And the reality is, we didn’t really know each other that well. And truly, it was just dumb luck, that he was what he was. And there were rough times during the marriage, in the beginning, but we both knew the other one was worth it.

JANA – That’s such an interesting point that you make. I think that might be a generational thing because, you know, nowadays, we can find out pretty much anything about somebody. And it happened in your generation and my mom’s generation.  You’re a little bit younger – well, significantly younger, probably than my mother. But the two didn’t really know each other. I know when my parents got married, they just kind of went on a hunch, like the two of you, you and Ady kind of knew, okay, we’re gonna make this work. There’s something there.

HELENE – Exactly. And let me tell you, when I brought him up to Cornell, and we were engaged one of the sorority sisters said, how do you know? And I looked at her and said, two words: he’s good. And later on, berated myself, because I thought, if that’s all you can say about the guy you’re marrying, why are you marrying this guy? I mean it.  I really tortured myself. And as the years passed, I understood that that gut reaction was the most profound thing I could have said, because as life worked out, that was the most important thing.

JANA – And so I’m fast forwarding here. I know that Ady was on the verge of retirement when he was diagnosed. How did the two of you envision your time together post retirement?

HELENE – Well, as any couple that have kids who seem successful, and ours were, and grandchildren who seemed to have excellent potential, you know, you think you’re going to take the time to enjoy life and live it fully. And the interesting thing for me is, I knew clearly that Ady was not the man that he was long before the diagnosis.

JANA – So what were some of the signs? Yeah, tell me,

HELENE – And he knew it too. He was brilliant, and he would write everything down – wrote everything and wouldn’t throw it away. And the signs were there actually, as I started looking at the records, when I realized I had no intent in writing a book – none. But when I realized – for me, these were just notes for me – when I started looking back, I was stunned that, I think it was 24 years before his official diagnosis. We went for testing. And Ady went willingly, because he knew that he wasn’t what he was. And one is never prepared. Even though all the signs were there. It’s still a shock when it happens.  You’re never, ever, ever prepared. And the doctors send you to a place to be tested. And when he was tested, the tester didn’t know that his IQ was off the charts.

HELENE – And in the testing, he came to the minimum, the average.  They said he’s fine, nothing to worry about. So they were comparing him to the general population. And some of the doctors, several of them early on, said the wife is overly concerned because both his parents had Alzheimer’s. And the year before he was diagnosed, they said he seems better than he was last year. No further investigation required.   And when we hear that a test is normal, what do you do?  Yay!  Yay!  We’re okay!  We want so much to believe that he is fine, even though we know he’s not, that we go with that. And had I to do it over again, I don’t know what would have been different. I mean, I don’t know what I could have done. But the reality is, we know but we don’t want to know.

JANA – Right. So how did your grown children react to the diagnosis, Mark and Bonnie?

HELENE – They weren’t surprised. Even though they lived in another town, they were so supportive, so supportive, and I didn’t walk across the street without checking, especially with my son. Mark is a cardiologist, so I was very blessed to have that support.

JANA – I thought it was interesting that you read a bunch of heavy books on the Holocaust rather than upbeat sort of sunny books to stay positive. Why did you go in that direction?

HELENE – Well, first of all, it’s a subject I’m interested in. But it was so important for me, even though my friends said you should be reading something light and happy. And I’m not at all minimizing the problems of Alzheimer’s. But when I saw the kind of suffering that thousands and thousands and millions went through, it put what I was going through – with a kind, gentle husband, who was cooperating – it put it in perspective and it helped me.  If people could survive what those people – the degradation, the starvation, the freezing cold, the stripping of their lives- if they could survive that, I’m going to do okay with it.

JANA – So I mentioned in the opening that after his diagnosis, Ady said, I don’t want to live anymore. I wonder if you could speak a little bit about how he evolved from despair, to accepting the diagnosis.

HELENE – And that’s basically what the book is about. Because he went down the usual path, really for the first year or two, with frustration, with annoyance, with impatience and many of the things that we see.  Never violence, fortunately for me, but you know, he was going down that path. And we were talking and he looked at me with sort of an annoyed look. And my first thought for a few seconds was, that’s not so bad. I can live with that. And then something inside me screamed, No, you can’t. And I remember from the very beginning, how I handled it was a pat on his cheek and saying to him, dear, do you have any idea how much I love you?

HELENE – Big smile. And then I said, when you looked at me that way it was very hurtful. I’m really trying hard to do everything I can to help, and that looked didn’t help.  And he looked at me with full comprehension and said, I’m so sorry, dear, please tell me if I ever do that again. And so I found that I reached him with honest talk.  I never said one thing that I didn’t believe that wasn’t true, from my heart. And because he cared about me, he wanted so much to please me and he wanted to help, even before he was diagnosed.

HELENE – We were on a ship, on a cruise, I mean, years before, and he was having problems adjusting ta new space, where things were, and he couldn’t find his medication. He thought somebody stole it. And that scared the life out of me. And then he said, someone took my pajama top. And he was chilly, and he’d put his pajama top on over his shirt. And I could have him down. I could have said, look at you – you’re wearing it, you jerk.  And I didn’t. My instinct was, touching again, touching his face: you’re wearing it.  With a smile and a laugh. He said, oh my goodness. But I think the way I started handling him instinctively… if he knew it was on, he wouldn’t be acting that way.

HELENE – Instinctively, from the very first.  And it started to turn it around.  And throughout the whole process, I don’t think he ever felt alone in it. He knew that we were team, that I was there to support him in any way I can. And it wasn’t till much later that I was aware of what I was doing. I wasn’t aware of what I was doing when I said that to him.  It just was instinct. But when I became aware of what I was doing, and the thing that worked for me particularly was this: I watched him keenly, and every time I found something that worked, instead of saying, Oh, that was a good thing to do about this.

HELENE – Every time I found something that worked, I tried to think of what is the principle behind it? What is the philosophy?  Why did this work?  So I could apply it to something else. And there are many examples of that in the book. Two quick ones: it was clear before he was diagnosed, that he shouldn’t be driving anymore. And I didn’t know how to handle it. And I had just taken him to a wonderful, wonderful psychiatrist in Massachusetts. And I told her that I had this problem. And what she did, very nonchalantly, very matter-of-factly, [she said] you know Ady, you’re on some new medication now.  It might be a good idea for you to stop driving until you see how it affects you.

JANA – Hmm. Interesting.

HELENE – He understood the reality of that.  He said, okay.  No fight. And months later, we were going to a concert and someone said, Ady is driving home?  And he said, no, I don’t drive anymore. That was the end of it.  I had to hold back my sigh of relief!  The reality is, he knew that he was getting lost occasionally.  He had a couple of little fender benders. And I think he was relieved that somebody was taking him. So the bottom line is, it wasn’t just how you take a car away. What was the philosophy behind it? And the philosophy was, not now versus never. And that became something that I looked at everything that was that kind of the situation, and I applied over and over. The biggest one I applied, and probably the most important one was, we had this marvelous housekeeper Lisette, and she’s been with us for 15 years.  When she became his chief caregiver she trained everybody in the house.

JANA – I liked the fact that all the caregivers had to pass through her first.

HELENE – Oh, absolutely. And she was right every time.

JANA – She was your screener.

HELENE –  Absolutely.  And she adored him, because he was kind, he was Ady to her.  He treated her like a human being and he was kind and gentle and interested in what she was doing.  So, if she had come into the bedroom and said, with a big bright, cheery voice, Mr. Berger, your breakfast is ready!  I would have said, isn’t that lovely? Isn’t that great? She never did that. She would come into the room – and the first time I heard it my jaw dropped – Mr. Berger. Are you ready for breakfast? And I thought, Oh, my gosh, what a difference.  In one, it’s a question, he’s in command. He would give the answer.  And the other, no matter how sweetly you say it, “your breakfast is ready” is an implied command. You have to come now, and eat.

HELENE – And I applied that constantly. I almost never told him what to do.  Honey, do you think you want to go to the bathroom before we leave for the doctor’s office? Would rather do Sudoku after dinner, or would rather do some drawing? Almost every single thing I said was in the form of Lisette’s question. You know, grown men, particularly –  women as well – people who had been successful in life, are used to being in charge, they’re used to telling people what to do… all the sudden, they’re being told when they have to go to the bathroom, when this – and they fight back. They’re not used to that.  Men or women.  When you’re used to being your own boss and you’re suddenly told what you have to do, it doesn’t have good results. And so that’s what started [it].

HELENE – You asked me, what changed? That’s what started the changes. But I guess the main answer I have for you, the main theme throughout the book, is that the way we respond makes the difference. And I think in all cases, people know when their memory is deficient, not even with Alzheimer’s, whatever it is, they know when they’re declining. And so I found with Ady, although his memory certainly was deficient, there was a heightened sensitivity to my mood, my tension, my frustration. For example, if he asked a question, many times, in the beginning, I did what everybody does by the fourth or fifth time when they ask the same question where you going tonight? You either raise an eyebrow, or you take a big, inward breath, implying: I told you that a thousand times.  And then, Dear, I’m   going to the ballet with Elaine – meaning, I just told you that.  And I saw when I did that, that it was a punch in the gut for him. And I loved this man. And I saw how what I did affected him. And I said, I’m not doing that anymore. I will not do that to him anymore. And if it’s the sixth or seventh or the eighth time, by response is: sweetie, I’m going into ballet with Elaine.  And he’s: oh, yeah, I remember.  And I didn’t belittle him by my own frustration, my overreaction. I think that was one of the hardest things that I had to do.

JANA – Well, it takes such concentration and discipline. I mean, you’re really forced to confront your own methods of communication. So…

HELENE – Exactly.  I just want to say that what helped me – and it became much easier with time, when I saw the result – but I also developed a mantra for myself, from the very beginning. And that was, that if he remembered, he wouldn’t be asking.  How can I be annoyed?

JANA – Right. That’s in the book too. Right, that resonated when I read that, in particular. Something else that was really moving was when you were in a situation – I can’t remember specifically what it was – but you had a friend who said, “Look, everybody loves Ady.  Don’t try to cover for him.” This is something that we often do, inadvertently.  We try to cover for the person who has Alzheimer’s, or any form of dementia. And I think this is as much about covering for ourselves as we are covering for the other person, right?

HELENE – Absolutely. And that was before the diagnosis.

JANA – Right. Clearly, that was earlier on. So instead of trying to cover for him, you adopted a more authentic approach of letting go and letting it be what it was, sort of thing.

HELENE – And the reward for that, when I wasn’t hiding it, is – I learned so much from so many people who came and taught me things. Whatever the situation was, I listened and I learned and I didn’t feel alone anymore. Basically, what Agewyz does. When you share what you’ve got with others, you’re no longer alone. And that’s precisely what you do.

JANA – One of the many points you make in this great book is that you talk about your sense of having a dual mission.  You had this dual mission of both supporting your husband and seeking joy every day. So how did you manage to strike a balance between fulfilling your own needs and his?

HELENE – My niece said that was her favorite chapter in the book.

JANA – Well, it’s one that a lot of people struggle with.

HELENE – You know, it’s interesting.  I, at first – this is going to sound awful – but at first, I was almost embarrassed if I was invited to something that I knew he wouldn’t do well at.  If I went myself, at first, I was so embarrassed. What will people think? Which should be the last question in our minds, ever, in life.

JANA – if you go with him? Or if you go alone?

HELENE – Oh, no.  If I went alone.  I didn’t subject him to things that I knew would not help. If I went myself, I thought what will people think?  And the opposite happened.  People I barely knew would come to me and say, Helene you are handling this so well. And that helped me. And the same doctor that I went to when I was having difficulties with Ady, I continued to see. And she encouraged me: make time for yourself.  Make alone time.  And I believed her because she was very, very wise. And I was encouraged professionally: take time for yourself. You cannot be there, 24/7.  And the reality is, when I think about it – I really haven’t thought of this before – he did the first three and a half years, no help.  In the last two and a half years he fractured his hip, and I had no choice. I couldn’t lift him. I just had no choice.

HELENE – And although he started making progress before, his greatest progress was when I had the time to get out and play a game of tennis. But the more I took a few hours each day, I came back whole and ready to be with him and give him my all.  If it’s 24/7, one of you is going to crash.  It’s not possible. But we don’t believe that, especially if we’re successful women or men, we think we can handle the world. We can’t.  We need time to rejuvenate and to be whole.  To sit down and read a book, or to meditate or do something, we need that separation.

JANA – So those first three and a half years after his diagnosis, when you chose not to have any additional help, must have been really hard on you. What’s your take on why it took you so long to reach the conclusion that you did need help?

HELENE – It wasn’t until he had an accident and I had no choice.  Very simple. And even when I had help, I never had help at night. I wanted to be near him.  I wanted our time together.

JANA – So what sort of strategies did you employ for hiring the right aides? Give us some interview tips.

HELENE – Okay.  I will tell you, the most difficult job of my entire years of living with Alzheimer’s, was finding the right person. And there’s a chapter on what to look for in an interview, and how to let them go when they’re not working, which I found very difficult in the beginning.  I thought I could change things. In the beginning, I had great difficulty letting someone go.  It just wasn’t in my nature. And I said to myself, you’re worrying about them. Worry about your husband.  He comes first. And if it’s not working out, you let them go. And in the beginning, I tried to let them go gently. And then the final one, who was really a horror – she roughly changed him, didn’t say how was your nap? Nothing.  I thought, she is outta here.  And I was furious.

HELENE – And I didn’t say a word, because I thought she would be very vindictive. She went home, and she was off the next day.  And I called her in the morning and said, I need you to come in. Why?  I said, I need to talk to you. Why?  I said, I need to talk to you. And then she came in and I took her to another room.  I said, this is not working out for me.  Why?!? Like a broken record.  I mean, any reason I gave her, she would fight me on. I didn’t want to fight. And I handed her a check for next week’s salary. And she left in such a huff. But I mean, that was the worst. But by then, I was tough enough and had learned I didn’t have to give her any reason. My reasons were my reasons. It just wasn’t working for me.  So.

JANA – So earlier, you said that you really didn’t set out to write a book.  Tell us a bit about how the book took shape.

HELENE – Okay. Every time I did something that worked, I – mostly it was concerts, we went to concerts three or four times a week — and mostly at concerts, I would sit there, look for a blank page in the concert program so I could write a note in case I had any thoughts.

JANA – You’re so diligent.

HELENE – No, I was ready just in case.  I started writing these notes to myself so I could remember – for me, only for me, I never dreamed about a book – so I could remember what worked. And so many people saw the change. I mean, here’s a man who, the last night of his life – we never dreamed it was gonna be the last night, he was doing beautifully – I took 17 people to dinner, our friends, I never told him ahead of time so-and-so is coming. And we got there, and the last night of his life, with six years of Alzheimer’s, he greeted every single person by name.  Unheard of, as you know.

HELENE – And he sits in his wheelchair, and he raises his glass to make a toast of water – he never drank, not since Dartmouth where he got drunk on beer one night, and he never had another drink again.  And he raises glass, and he makes the most coherent, articulate toast thanking his friends, our dear friends, for their coming, for their attention, for their phone calls, for their kindness, for taking care of me. And two of my close friends, after the dinner, came to me and said exactly the same words: are you sure he has Alzheimer’s?

JANA – So let’s go back to how the book took shape.

HELENE – Okay.  Sorry.

JANA – That’s okay.

HELENE – So friends kept asking me questions. And when friends kept talking to me and seeing the result, I suddenly said, I have a book here.  And you’ve even got the notes.  In fact, I went to Dr. Duara…

JANA – He was the one who diagnosed Ady, right?

HELENE – Yeah, he was the head of the Wien Center for Memory Disorder, the state-of-the-art center. And we finally got the appointment with him.  He loved Ady.  Everybody did.  But he saw the progress himself. He did the testing. He knew it. And when I said to Dr. Duara, you know I’m thinking of doing a book.  He said, my suggestion is, I’m going to give you the names of some magazines, do it an article at a time.  You’ll never do a book because most people have these bright ideas and never do it.  And then I think part of it was: you thought I wouldn’t?  I’m doing it.

JANA – Well, yeah. I mean, it’s a big undertaking.

HELENE – Tremendous. Tremendous.

JANA – Did you have any idea it would be so hard? Or was it hard?

HELENE – Well, yes, it was hard. But the same doctor that I continued to see, when I told her, I said have a wild idea. She absolutely encouraged and encouraged when she knew I wasn’t doing it.  She said, Helene, you have something of real value to give to the world. And you’ve got to do it. And her confidence in me made me realize that I really could. And don’t forget, although I never wrote a book, I’ve been speaking for 40 years around the country. I’ve had these major positions at different organizations. And I’ve been writing speeches for 40 years.

JANA – Indeed, I was going to ask you about that in this context, which is that: becoming a caregiver often happens suddenly, and it can be disorienting and overwhelming. But oftentimes, I think people are better prepared for it than they realize. And so people don’t know this from my show, but you have held major and demanding positions of leadership throughout your life. So my question was, how do you think that your past experiences provided what turned out to be what you refer to as a “crucial underpinning” to your role as a caregiver, and to your success with this book? Because I know that you’ve had these demanding positions of leadership, so I think they prepared you.

HELENE – Well, that’s an interesting question I’ve never asked myself.  But I think the fact that people chose me for these positions gave me the confidence – and I really didn’t have that much confidence as a kid – but with each role that I took on, and some of them were major national roles, I began to understand that I was pretty good. And so I found that I wasn’t coming to it with a blank slate.  My background and what I did, let me think that yes, I could do it. And I knew – I make this very clear in the book – I don’t promise anyone in this book that they’re going to have this kind of success.  There is no way I could. It’s not going to happen.

HELENE – Each relationship is different. What I do suggest is that if one follows the things that worked for me, the odds are their lives together will be easier, more fulfilling, and better. The whole point of the book is really, the more we can allow those we care about to preserve their dignity, and the more we can give praise and support just like when we were kids, the more they’re going to succeed. The most important message that I hope the book leaves the readers with, is that we’re not automatically the hapless victims of fate, that we’re not powerless, and that our actions can make a difference in the one who we’re caring about our actions can change their lives — and our own.

HELENE – I saw the change. I saw how we – and not me – we, together, turned it around. I remember in that chapter about the inappropriate behavior. When I was getting reports back from caring friends that my husband, who never said an off-color word in his life, was making comments to women that were inappropriate, I heard it and I thanked them. And then I heard it myself. I took a deep breath, never said a word to him, and came home and started my usual beginning: Honey, do you know how much I love you?  Big smile. And then I said, I heard you say – I’ll call her Jane – I heard you say to Jane tonight, I’m looking at your boobs.

HELENE – Guilty look. And then he said, I’m sorry, dear, I won’t do that again. And then I said, Honey, let’s not look back, let’s look to the future. What can we come up with, so that I can remind you if it should happen, again – remind you that that’s inappropriate behavior? I said, Let’s have a secret word that I can whisper to you. And he said, What about inappropriate?  I said, that’s wonderful. That’ll be our word.  That’ll be our word. So that was part of it: he was a part of the process.

HELENE – But equally, if not more important, when he did do it again – as he did less and less frequently, but in the beginning, often – I would squeeze his hand and whisper in his ear: inappropriate, sweetie.  And he would smile and nod. And it happened less and less and less. I never said it in anger or annoyance: inappropriate behavior!  It was always with kindness, and that we were a team pulling together. And that was the modus operandi through everything we did. And the key to that – there’s two parts to that: one, that he came up with it.  And secondly, the way I told him when it happened again. That’s why I think we had the success.  It wasn’t me.  And I was fortunate enough to have a cooperative enough husband who got it, and who wanted it to be easy for me as well as for him.

JANA – Well, like you said, every relationship is unique and what works for some might not work for others. But there’s a lot in this book that I know people are really going to benefit from. So I’m going to encourage everyone to read it. Your book includes a diary entry written just after you graduated from high school, and part of it reads – and this is a quote – I ask myself at 17, will I be happier at 70 when my face is wrinkled and my body grows stiff?  And I answer, yes! I hope to be more complete at 70.  So my question is, what is your life like now? And do you feel more complete?

HELENE – Make me cry. I feel so fulfilled. I’ve had these major positions of responsibility that gave me a tremendous sense of worth. Of all the wonderful things that I’ve done, nothing compares to the joy, the gratitude, the fulfillment that I got from giving my husband years of joy and dignity and contentment and acceptance that this role did.  And that lifted me so profoundly.  I’m blessed with wonderful friends. I’m blessed with kids who are totally attentive, even though we live in different cities, and having written this book is like a fulfillment of a life. It’s like, as I say, it’s so far surpasses all the wonderful feelings of accomplishments that I’ve had my life. So that’s my answer

HELENE – And not only do I not feel lonely, but in the last two months, since the publishing and all the things that go into it, I’ve barely been alone, for two months at least, because I’ve been working. I want to stress that although Alzheimer’s is in the title, and although I write this book as one who’s dealt with Alzheimer’s and that’s where I learned what I did, this book is universal.  A friend of mine – the daughter of a friend of mine – read the book and she said, I want you to know that this book has already changed the way I speak to my husband. So this book is much more than Alzheimer’s, and especially for any caregiver who’s dealing with anyone declining in any way, or even if they’re not.

JANA – Sounds like a great place to end. We’ve been speaking with Helene Berger, author of the book, “Choosing Joy; Alzheimer’s: A Book of Hope,” which was inspired by the unexpectedly positive results that Helene’s husband Ady and she achieved together after his diagnosis of Alzheimer’s. This is a really moving, accessible book and as Helene mentioned, the insights can be applied not just to a loved one with Alzheimer’s disease but in caring for individuals with any type of debilitating disease. We will have a link on the Agewyz website to Helene’s website, where you can learn more about her work and about the book. Helene, thank you so much for being on the show and for writing this wonderful book, which I know a lot of people will relate to and benefit from reading.

HELENE – Jana, thank you so very much.