Former Governor of Wisconsin, Martin Schreiber, returns to Dementia Matters to discuss different methods for communicating with a loved one with Alzheimer’s disease, including therapeutic fibbing. Governor Schreiber has been a widely outspoken advocate for Alzheimer’s disease while caring for his late wife Elaine, who passed away from the disease in April of 2022. In this episode, he also talks about his book, My Two Elaines, where he opens up about his experience as a caregiver.
Guest: Martin Schreiber, Former Governor of Wisconsin (1977-1979), Former Lt. Governor of Wisconsin (1971-1977)
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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.
Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today, I am joined by former Wisconsin governor and returning guest on our show, Martin Schreiber. Governor Schreiber has been an outspoken advocate for Alzheimer's disease and dementia awareness while caring for his late wife, Elaine, who passed away in April 2022. As part of this advocacy, he discusses different methods of communicating with a loved one living with Alzheimer's disease, including therapeutic fibbing. He joins us today to talk about his book, My Two Elaines, as well as communication strategies and caring for a loved one with dementia. Governor Schreiber, welcome back to Dementia Matters.
Governor Martin Schreiber: Well doctor, thank you and thank you for the wonderful work that you're doing. We're very grateful for that. Thank you.
Chin: I love your book, My Two Elaines. I have multiple copies in my clinic office as well as my research office. I’m always willing to share that with someone who's interested in getting a very important perspective, that of a male caregiver and that of a caregiver of someone experiencing this change. I’m happy to have you back. I have a whole list of questions for you. My first one is just to start things off: what motivated you to write My Two Elaines?
Schreiber: What it was basically is that I began to understand that if Alzheimer's is bad, ignorance of the disease is worse. Lo and behold, as I am on this journey with Elaine, I'm realizing that we're missing out on moments of joy. I realized I really didn't understand what was going on. I realized I couldn't fight this disease directly and I began to understand that I owe it to my wife and I owe it to others to try and help them live their best lives possible. I just wanted to make sure that because of my experiences I would be able to share those experiences with other people so that they might learn and they might have a better chance to live their best lives possible.
Chin: And sharing you have certainly done. You have given innumerable presentations throughout the state and I believe throughout the country discussing topics found within this book. What kind of responses have you received from readers and from people who meet you at these presentations?
Schreiber: It's really been quite rewarding. It seems like the book resonates. It seems like people who read it helped them truly understand what is going on. Now just a quick background, before I went to print for my self-published book, I found a series of notes and journals that Elaine had been keeping since her diagnosis. I want you to know that during that time before I found those notes and journals, I want you to know we had prayed together and we had cried together, but never did I understand the courage that it takes for someone with a diagnosis to continue forward. Never did I understand how important of a lifeline I was for my wife. And what happened was, because of the repeat questions and because of the car keys going into the dish and all of those things, that frustration and intensity was going on: “No, Elaine, it didn't really happen on a Friday, it happened on a Saturday.” “It wasn't the Jones’s, it was the Smiths.” And here I am, someone who is ill, someone who is losing their memory, and she's going through this tough time, but in addition to that I'm heaping, for example, coals of fire on her head by this concept, this correcting and so forth, not understanding that her mind was broken. And not understanding that in order for us to live our best lives possible I had to join her world. I had to understand I couldn't keep her in my world. As long as I tried pulling her back – “It happened on a Friday not on a Saturday” – there was more frustration and anxiety on my part but also more challenges and uneasiness and worry and concern by my wife, Elaine. And I say, “Oh my gosh, I hope I can share with people,” so they can at least grab some more of these moments of joy, some of those moments of joy that I passed up because I insisted for a time to keeping Elaine in my world.
Chin: And I agree, I think that book does resonate with many people, many family members, those who might even be experiencing their own thinking changes. You've written it in a very personal way but one that can be generalized to that experience. And I think that's why so many people appreciate hearing you speak. As I've read this book a couple of times now I always wonder if you have a favorite section that you wrote. Is there something that is part of that book that really spoke to you now that it's done?
Schreiber: Well, I don't know. I think about that at various times and I think the most important aspect of this all is to realize the importance of joining the world of the person who now is, to let go of the person who once was. I think that's what I want people to get out of this book that are reading it. One aspect that I did cover, Elaine and I were having lunch one time in assisted living when she was still communicative. While we're having lunch she began to cry and I said, “Elaine, why are you crying?” Well she says, “I'm beginning to love you more than my husband”. Well I didn't ask her, “what's wrong with your dorky husband.” I didn't do that, but that proved to me that it is not necessary for her to know my name in order for our hearts to touch. And I guess that's just another part of the book that I want to make sure that people understand: it is not necessary. And I tell you, when I have talked with people sometimes they become so distraught and unhappy and just hurt because their loved one doesn't remember their name. That's okay. And I want people to understand that their loved one is really doing their best. And holding up a hand and the smile and maybe the rubbing of an arm is every bit as important, probably more important than even remembering the exact name of the person. You know, 18 years ago when Elaine was just diagnosed, Alzheimer's could not be cured, delayed, or prevented. When Elaine died with 18 years of this, it still is a disease that cannot be cured, delayed, or prevented. With that, I want to underscore in my book the fact that we can't fight this disease directly head on, but what we can do is say forget about fighting this disease head on. Our battle and our goal is to help both our loved one and the caregiver live their best lives possible. Then the question, “How do we do that?” That's what I enjoy talking about.
Chin: This book is about being a caregiver as well as about how to approach caregiving. What does it mean to you to be a care partner or a caregiver?
Schreiber: Well, it means a lot of different things. I think first of all when the diagnosis is first made in general, the caregiver is ignorant of this disease. I think also, in general, the medical profession is ignorant of this disease. So what does it mean to be a caregiver? It means I think, and I bat around this in my mind, I think it means almost that the caregiver must determine and understand that we actually have a moral obligation to try and learn about this disease. And that moral obligation comes about because of my understanding of the challenges faced by the person who is diagnosed. And how knowing then that as selfishly as I might want to fight it and keep this person in my life, but no, it's not fighting it directly again. It's helping our loved one live their best life possible and we can do that again by joining their world.
Chin: Are there things you wish you had done differently, now that you know as much as you do?
Schreiber: Well, of course. I wish I had learned more about this disease earlier on. When the doctor made the diagnosis they said basically four things. Namenda and Aricept, well that was sort of easy. The next thing was socialization. That was sort of easy. Then walking was sort of easy. And then a glass of red wine every evening. Well, Elaine got four weeks ahead with the glass of red wine and three weeks behind in the walking. But when we would go for a walk in my world, and my busyness, a half an hour was what we would do for a walk. That was it. We would be walking and Elaine would say, “oh look at that pretty flower.” “Come on Elaine. You know we need to go for this walk.” “Oh look at the bird, how pretty.” “No, we got to keep on going.” In other words, what I wish I would have done was understand that there are these moments of joy which are so critical but come up at inopportune times where we can once again share something special with our loved one. And I often think when we were going on these walks, what it's like to look at a pretty flower or the blowing of the leaves with their loved one. What's the difference between being able to appreciate that kind of togetherness then if you would be sitting on some mountain side looking at the Swiss Alps so to speak. And you know this disease is a terrible disease, but the fact of the matter is that we can extract moments of joy from it. We can take it upon ourselves to learn about this disease and understand that we can't fight it directly head on, but that we can again make the determination to help our loved one live their best life possible. Sometimes very frustrating, sometimes very discouraging, sometimes very frustrating, filled with anxiety and worry and all of the things that come with it, but what else are we going to do? That disease is there. All right? We have to accept it now. What can we do? Well, we can go about our business joining the world with this person who now is.
Chin: How did your caregiving approach change as Elaine's condition changed?
Schreiber: Well, it's a series. It's a journey. So early onset was sort of easy. Just had a worry about whether she would get lost if we would be shopping together. And then as things went along then it was the constant repeated questions and just getting to that frustrating part. Then it was realizing that I really couldn't take care of her by myself and trying to have some caregiver come into the home, which Elaine would not accept. Then it was looking at daycare trying to get a better function. And then it was one of the toughest, cruelest decisions I have ever had to make in my mind and that was placement in assisted living. That was horrible but very important and better for Elaine and better for me. What happened as a side note and not even as a side note but very important and that, is that I had a friend who had a heart attack and died in a massive heart attack. It was tragic. In the prime of retirement life and so forth. Well, there was a funeral and people came to express their sympathy and there was closure. A caregiver on this journey loses their loved one a little bit every day, every week, but there never is closure. And so one of the things that I want to encourage caregivers to do is to understand that they are going through a process of grieving. And if we understand it, I think then it's necessary and important to acknowledge it. And then it's necessary and important to cry and to understand that this is a great challenge in life. It's very difficult. You're actually a hero for what you're doing. But because we understand it now a little bit better, we can deal more with these emotions and get them out in front of our mind and in the forefront of what we can do. I think if we can do that we can help other people understand that. They can mourn with us. They can also acknowledge our grieving and that too, I believe, makes this journey easier.
Chin: And one of the important topics that comes up in your book is therapeutic fibbing. And so for our audience, what is therapeutic fibbing and how does a caregiver respectfully use this technique in communicating with a loved one living with dementia?
Schreiber: Well, therapeutic fibbing. Elaine asked me once how her parents were and I said, “Well Elaine, your parents are both dead.” Well, the shock on her face when she realized that maybe she didn't say goodbye to her parents, much less attend the funeral. I promised myself I would never put her through that again. So, the next time she asked me, “How are my parents?” I said, “Oh, Elaine, your parents are so well.” I said, “Your mom likes working at church. Your dad likes his sports. I said they're doing very well.” “Oh that answer makes me feel so good.” Well, what therapeutic fibbing is is really joining the world of this person who now is. I want you to know that therapeutic fibbing, I tried therapeutic fibbing in the first year of our marriage and that doesn’t work so good during the first year of a marriage. But when our loved one has dementia, has Alzheimer's, we then have a perfect opportunity to join their world. You know if someone wants to go out and milk the cows or if someone wants to give a campaign speech or if someone wants to do whatever, if we can join their world. Now going along with therapeutic fibbing has also redirection. And let's say it's 9:30 in the morning. Elaine says, “I would like a glass of wine.” The answer is not, “No, it's 9:30 in the morning you can't have a glass of wine.” The answer is, “Do you want red wine or white wine? Do you want it in a large glass or do you want it in a glass without a stem? Do you want to drink it with your sisters or with the neighbors?” Maybe by redirection, we in essence can take away that confrontation of a glass of wine at 9:30 in the morning but then we get to another point and that is if redirection doesn't work. What is the difference if someone has a glass of wine at 9:30 in the morning if they don't know it's morning, noon, or night anyway. But anyway getting back to therapeutic fibbing you know, born and raised in a religious home and so forth to lie is not good. And that keeps many caregivers from, “Oh my I can't do that, I can't do that. I can't do it.” I want them to know that I did some checking. Moses went up to Mount Sinai to get the tent commandments. They went up there twice. Once they brought down the tablets in the old testament, they say that God carved and then also that he went up the next time and came back and then Moses himself carved it. In both of those editions of the Ten Commandments it says on the bottom that therapeutic fibbing is okay and also encouraged. So I want people to know that I checked it out personally. I actually saw those stone tablets and it says therapeutic fibbing is okay. And just step back a little bit and just think a little bit about it and we can understand why therapeutic fibbing is again so important for the life of our loved one because you know they know something is not right. They're uneasy. They're unconcerned and then to think they didn't maybe did not say goodbye to their parents or attend the funeral or are never going home or whatever it might be. The therapeutic fibbing is really joining the world of the person who now is and going along with what their thoughts at the moment might be. As long as it, of course, is something which is safe and not harmful.
Chin: How does a caregiver know when it's appropriate to use therapeutic fibbing? You jokingly mentioned it wasn't helpful in the beginning of your marriage, which I think many of us would understand. But how do you know in the spectrum of thinking changes that now is an appropriate time?
Schreiber: Well I think it's the moment. You don't wake up one morning and say, “Okay, it's therapeutic fibbing time.” You know it depends upon what the question is. “This peanut butter and jelly sandwich tastes like peanut butter and jelly.” Yeah, well, you're right. So another time you're eating a banana and say, “This banana tastes like a peanut butter and jelly sandwich.” Yeah, I think it does at times taste like a peanut… in other words again, you know it's one might say almost following the flow of the conversation of our loved one. And as we've followed this flow of the conversation, I think we'll begin to understand and see signs where it's important that we again join their world and understanding and you know sometimes a caregiver might walk in and they’ll say, “Oh my banker is here.” All right, yeah, your banker is here. And someone might walk in and they’ll say, “Oh my sister Sally.” Well okay, sister Sally. But again you know so much of this is easy for me to say because we're just talking about it. I know how very difficult it is when someone is living with a person with Alzheimer's or visiting them in assisted living. But if we just sort of think about it, their only world is a world that they're living in at the moment and I think whatever we can do to help the world they're living in at the moment be as comfortable as possible is what we should be doing. And what at that time of that is, I think our caregivers can sort of get a sense of that.
Chin: And that’s a really beautiful answer at the end there, Governor Schreiber. And it might be the answer for my next question unless you want to add to it. But if a care partner or caregiver experiences guilt from therapeutic fibbing, what would you say to them in an effort to console them?
Schreiber: I'd say that Marty Schriber went to look at the Ten Commandments as chiseled by Moses and that therapeutic fibbing is okay. And then I would also say understand the situation, look at what is happening, look at what good does it do to them if the truth is harmful to our loved one. What good does it do to bring them back into our world if they have no ability to do that because disease has progressed to that point? I know it's hard, but I think the joy that we would get by knowing that we're making someone's mind more at peace. I think that also should be a significant promoter of the use of therapeutic fibbing.
Chin: I want to give you a scenario that I get frequently asked, when a person with dementia is experiencing notable short-term memory loss and then loses a loved one, families struggle to determine if they should share the news of that death with them. Moreover, they even struggle in deciding whether that loved one, the person living with dementia, should attend the funeral. Did you and Elaine ever experience a situation like that, or if not how would you approach it?
Schreiber: Well, the answer is yes, we did have that experience. Elaine's brother died of cancer and I never told her. I think the question is is that person's world – I'm talking about our Alzheimer's patient – is our Alzheimer's patient’s world able to understand and grasp the reality of the situation? Is our loved one's world big enough to incorporate that into what they are about? And if we think it is not big enough then I don't think it's necessary to tell them. Elaine was not in essence referring to her brother for really any period of time in the months before her brother passed away. And she never asked about him and if she would I would say, “he's really doing fine. He's a great coach, he's a great director.” And so my own feeling is based on experience and this is, you know I'm not a medical doctor. I can only share what I have experienced, but if the person’s world is small and cannot grasp a situation of death or a funeral I would say no, don't say anything and just let it go. Just let it go. I just see the worry and the question and the uneasiness of the person who is ill as they might look at the coffin and see one of their siblings or loved ones there. I won't say it's cruel. I think that's too strong of a term, but maybe not as thoughtful as one could be when making that decision about whether we should tell a loved one about the death or a funeral.
Chin: Ultimately, you're putting the well-being and the comfort of the person with dementia at the center and focusing on what is protective and supportive of that person.
Schreiber: Absolutely, and again it's joining the world of the person who now is.
Chin: To end, Governor Schreiber, what are two key messages you want the readers of your book My Two Elaines to take away when they've finished reading it?
Schreiber: I think the importance of knowing that if Alzheimer's is bad, ignorance of the disease is worse. And therefore to find out more about this disease and then to also understand that one of the finest things we can do for our loved one is to join their world. And one of the best things we can do for ourselves is to join their world and not try and pull them back into our own world. To really let go of this person who once was so we can embrace and love and care for this person who now is.
Chin: Well with that, thank you Governor Schreiber for being back on Dementia Matters and for highlighting the important work you've done in My Two Elaines.
Schreiber: Thank you very much. Thank you.
Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Taylor Eberhardt. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at email@example.com. Thanks for listening.