Role Changes in Caregiving with Martin Schreiber

In this episode, Steve and Virginia speak with former Wisconsin governor, author and Alzheimer’s advocate Marty Schreiber about his personal caregiving journey with his wife, Elaine, who lived with Alzheimer’s disease. Marty shares how the experience transformed his life and led him to become an advocate for caregivers. Drawing from both heartbreak and wisdom, he reflects on the physical and emotional realities of caregiving and the importance of approaching dementia with compassion and understanding. Marty wrote a book titled, My Two Elaines, about his experience caring for his wife through Alzheimer’s.  

Transcript

Steve: 0:06

From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello everybody. Welcome to another episode of Spotlight on Care. Both Virginia and I are incredibly excited about the opportunity to talk to—his official name is Martin Schreiber, but we call him Marty. He is a former governor of the great state of Wisconsin. He's an incredible Alzheimer's advocate. Marty has done a lot of wonderful things in his career, but the most important stuff for our conversation is that he was a caregiver for his wife, Elaine, and he has published a book from Harper Horizon in 2002 called My Two Elaines. It's a great book. It covers a terrific set of advice and guide and I'll talk a little bit more at the end about it. So before we get started, I just want to kind of couch the topic we're going to discuss. One of the things that Marty's done a great job of capturing is the whole idea of what I've learned that I wished I'd done differently. And so we're going to kind of focus on that as our topic, because it just feels like great insight. So Virginia is going to start off, and then I'll give my little "what did I learn that I wished I'd done differently?" And then we'll jump into talking with Marty here. Welcome Marty.

Virginia: 1:38

Welcome Marty.

Marty: 1:38

Thanks very, very much, Steve. Hi, Virginia.

Virginia: 1:41

We're glad you're here with us this morning.

Marty: 1:43

Pleasure to be here.

Virginia: 1:45

I'll start—that's kind of an easy topic for me, because when I look back at caring for my mother with Alzheimer's, I remember the times that I said the wrong thing because I wasn't joining her world. She would say, "Oh, let's call daddy today." And I would say, "Mom, Daddy has passed. He's not with us any longer." I should have said something along the lines of, "Oh, he's such a wonderful man. We would love to talk to him." Something along those lines. I look back and I think—I didn't join her world. I wanted her to join mine, and that doesn't work with Alzheimer's. So that's what I have to say about that.

Steve: 2:37

Yeah. And for me, it was realizing that I couldn't care for Patty as well as I had hoped at home, and making the hardest decision I've ever made in my life, which is to place her in a community, knowing that she was going to get the best possible care that I could provide there. Tough decision—the guilt you feel and so on. I wished I'd done it sooner. It might have been slightly easier on me, but more importantly, I think that Patty would have gotten more out of the community. So that's a little background from us. We don't have the scope of learning that Marty does. Marty, why don't you talk a little bit about your journey with Elaine, how there became two Elaine's in your life.

Marty: 3:19

Well, first of all, again, I'm pretty honored to be with you. What the two of you are doing, and helping people through some very, very difficult times of their life is incredible. So thank you for that. And so with my two Elaine's. The first Elaine, well, that was the girl that I met when I was a freshman in high school. We sat next to each other in Latin class. Wow, I fell in love. I knew I wanted her for my wife. We dated and we went steady, and we got engaged and we got married, four children, 13 grandchildren, now, 12 great grandchildren, but my friend, my advisor, my companion, everything that you could ever want in the life's partner. One of her greatest things she ever did for me was when I would run for political office, she would be the hardest working campaigner, and what is important is if I would lose, she would never let me feel defeated. And that rings true to everyone who has to face sometimes insurmountable odds. We may lose something that is going to maybe tear our heart apart, but we also always have to understand that we can never allow ourselves to feel defeated, no matter how badly the pain—we can't allow ourselves to feel defeated. So that's the first Elaine. The second Elaine that began to appear when she was about 63, 64 years of age, and she would get lost driving to and from places she was going to and from for the last 10 years. She would come up with stories about what happened yesterday and so forth, and just unrelated to anything that was in reality. She was a great cook, prided herself in that, but then sometimes would mess up her recipe so badly that she would cry. So that was the beginning of the second Elaine. She lived with Alzheimer's almost 20 years, half of the time with me, half the time in assisted living memory care, and we get to the point, as Virginia and you, Steve pointed out, you know you had these experiences, and what I wish I would have done, and so forth. What happened was, on this journey, I'm beginning to realize, if there's one thing worse than Alzheimer's, it's ignorance of the disease, and I was ignorant about it. I didn't know—I'm not talking about the amyloids and how that works and brain nerves and so on—I'm talking about, as Virginia said, joining the world of the person who now is—that kind of very important practical advice. And so if there's one thing worse than Alzheimer's, it's ignorance of the disease, and even by the medical profession, who doesn't understand when there is a diagnosis of this disease, there's two patients, the person living with Alzheimer's and the caregiver. 40% of all caregivers die before their loved one due to stress-related illness, and caregivers have to be aware of that statistic of that number, because if caregivers don't take care of themselves, their children or their grandchildren or their dear loved ones, are going to lose two people, both the person who is ill, living with Alzheimer's, and also the caregiver dying because of stress-related illness. So hard to be a caregiver—the worry, the anxiety, the depression—all of those things coming together. I was on this journey of Alzheimer's with my wife, Elaine. When she passed away, I could not have asked her to stay on this earth for one more minute based on what the disease did to her mind and to her body. And so I thought, if it's possible for me to talk with someone who's going to be on this journey, and say, "Here I've been on this mountain path. And before you go on your journey, please sit down and talk with me a little bit, and maybe my experience can help you have a better life and help your loved one live their best life possible."

Steve: 6:53

Great opening, Marty, thank you. Virginia mentioned this and you alluded to it. Talk a little bit about how you learn to do it differently in terms of understanding the moment she was in.

Marty: 7:05

So Virginia, when you talked about experience, you know, not talking what really was in the life of your loved one, I had the same experience. Elaine asked me, "How are my parents?" I said, "Well, they're both dead—" "No, they're not." So we got sort of into an argument, and when I finally realized how troubled she was because she didn't say goodbye to her parents, much less attend the funeral, so I promised myself I'm never going to let her do that again. And so the next time she asked me, "How are my parents?" Oh, I said,"They're great. Your mom likes her church work, your dad likes the sports." "Oh," she said,"that makes me feel so good." So—Well, that's what I call therapeutic fibbing. So I was sharing with Steve there's two things that you should know about therapeutic fibbing. One is that I tried it the first year of marriage, and it didn't work so great. But anyway, the second thing about therapeutic fibbing—and I point this out to anyone who will be listening to me—that when I tell you this, not everyone believes what I'm going to be saying. So do you remember the story about Moses and the 10 Commandments and about Mount Sinai? So this was when God gave him the 10 Commandments. Well, if you go back those 1000s of years, I was there and I helped Moses. And so we're on the top of the mountain—Moses and I—and what happens is, we've got this great big tablet. He said, "We got to get this down to the bottom." And we finally got this great big tablet down to the bottom. And so I looked at it, and here in Arabic Hebrew—couldn't understand what was going on—I said, "What is that, Moses?" He says, "That's the 10 Commandments." I said, "Oh, my goodness." I said, "What about bearing false witness, which is the commandment about lying?" Oh, he says, "Yes, that's in there. You can't bear false witness. You can't lie." I said,"Moses, what about therapeutic fibbing?" He said, "Come with me." So he took my arm and he walked me around to the back of these tablets of stone, and here written in American English, were "Therapeutic fibbing is good. Therapeutic fibbing is advisable. Go, therefore art into the world and therapeutic fib." So people should understand that therapeutic fibbing is okay. I got it directly from Moses, and I just want to share that with people so they know that they can therapeutically fib until the cows come home and not have any

Steve: 9:14

Awesome story. So let's talk about living the best life possible. This is a phrase you used in our talk preparing for this interview. How did you see this? What did you learn about this?

Marty: 9:26

Well, here's the thing, when Elaine was diagnosed some 25 years ago, Alzheimer's couldn't be cured or prevented. Today, Alzheimer's cannot be cured or prevented for all practical purposes. And so if you remember when I talked about what Elaine did for me, allowing myself to understand that I may lose something very, very dear and precious, but I can never allow myself to feel defeated. And so if we get this diagnosis of Alzheimer's, if we're not careful, we can feel defeated, because we know at this moment in time there's no practical cure. But rather than giving up, rather than feel defeated, what we can do, which is very realizable, and I think, internally self satisfying, we can make a determination that although we can't fight this disease head on, what we can do is make a determination to help our loved one live their best life possible. We can do that. And Virginia, that's where we get to exactly what you were saying and advocating. And that is joining the world of the person who now is if we can sort of understand that. And I think as you experience—your listeners will experience—as long as we try and keep our loved one in our world—"No, it didn't happen on a Thursday evening it happened on a Friday. It wasn't the Smiths. It was the Jones. How many times must you ask me the same over and over," as long as we try and keep them in our world, the anxiety, the depression, the challenge to our loved one, to both of us, is even more significant, and so joining their world and helping them live their best possible life. And I want to tell caregivers that before I went to print with my first self published book, I find a series of notes and journals that Elaine had been keeping since her diagnosis. When I went through those notes and journals, I want you to know that we had prayed together and we had cried together, but never did I understand two things. Number one, the courage that it takes to be diagnosed with this illness and then to move forward with all of the worries and all of the concerns that you have knowing that you're going to be losing your memory. The second point that came through was that I was her lifeline. In other words, when she knows she's losing her memory, she has all these questions about what the future might be, and I'm her lifeline. And I didn't realize that, but here is what I was doing. I was gnawing at that lifeline. I wasn't getting enough sleep, I wasn't eating right. I wasn't getting enough socialization. I was drinking too much. I was irrationally irritable, and so this man—Marty, who loves his wife—what happens is he supposed to be the lifeline, but he's gnawing at it so much that it becomes weak and useless. We caregivers have to understand if we're going to determine to help our loved one live their best life possible, that means that we, too, live in our best life possible as well. We can understand that it's going to be easier for us to ask for help. We caregivers don't ask for help. Sometimes we're too arrogant and self centered and maybe even selfish, but we have to understand that to ask for help means we're not giving up. To ask for help is a matter of courage. What is our goal? We can't beat this disease, but our goal is to help our loved one live their best life possible, one of the ways, joining their world, but also taking care of ourselves, so we are in a better position to be that lifeline.

Steve: 12:53

Let me interrupt you there. I think that's a good place for us to go off on a discussion of how you got help and how you accepted help. I think that's a challenge for any caregiver. We isolate ourselves too often, and we don't accept it. And so maybe you could talk about what you learned about accepting help, Marty.

Marty: 13:13

What happened was I'm getting sort of run down. I'm not really doing the best job helping with Elaine, my children actually had a intervention. I have four children. They sat me down. They said, "Dad, if you don't do something, you're going to be dead before Mom, and we don't want to lose both parents." That helped me better understand. What helped me also better understand—I went to counseling. Elaine was having more serious memory issues, and so I went to the counselor, and I said, "I just can't see putting Elaine into a home. I just can't see doing that." And my counselor says, "You are not putting Elaine anyplace. You are helping her be who she is now." I asked him the question, "Can Marty Schreiber's 24/7 nursing homecare take care of her?" Absolutely not, because I was not her lifeline anymore. I was a fragile, ill, self centered, arrogant person. I wish it would have come like a bolt out of the blue, but it just is so agonizingly painful, almost like Chinese water torture. Finally, you get to the point, "Wait a minute. I can't do this by myself. Wait a minute. If I really love my wife, I'm going to make sure that I have the best talents and ability within my own being the help her, and I can't do it if I drink too much or not getting enough sleep or not throwing down the line." To finally come to that realization that it's simple, we want to help our loved one live their best possible life. We can do that one of the ways, by taking care of ourselves too. So we have the strength and the ability to do that and to ask for help. We've got to do that. It's a sign of not giving up. It's a matter of courage, intelligence. The counselor said, "You know, Marty, it's helping Elaine live her best possible life." Well, then it hit me, my fight with Alzheimer's was personal between me and Alzheimer's. Forget about what's best for Elaine. And it hit me and I said, "Marty. What are you doing? You're just being selfish and egotistical." I regret so much that I was not smart and intelligent enough to ask for help.

Steve: 15:08

So what kind of help did you ask for? And besides the health issues that you took care of, that you worked on, where did you get other help?

Marty: 15:15

I tried to have someone come in and help Elaine during the day so I could get some rest, but she would not have any other woman in her home. And so I tried all of those kinds of things in here. If you're a friend of a caregiver, understand one of the most important things that you can do for that caregiver is simply to acknowledge you understand what a tough challenge it is to be a caregiver. That is one of the things that helped me when people finally realized that. But then also I was ignorant of the disease, but I didn't share with other people what I was experiencing. And so if there's one thing worse than Alzheimer's, that's ignorance of the disease. What makes it so difficult—this is not what you call a chicken casserole disease. Hypothetically speaking, if I have open heart surgery and I'm laid up at home, people bring me chicken casserole. I have hip surgery, I'm laid up at home, people bring me chicken casserole. So now my wife has Alzheimer's. Because people are ignorant of the disease. They don't know what to say, they don't know what to do, so they stay away. And now not only do I feel that anxiety and anticipatory grief and the depression. Now I'm feeling deserted and abandoned. What finally happens is you feel so lost, and you finally get to the point where I can't do it alone. That's when you start reaching out for help. And so I was able to get Elaine into memory daycare. That was very, very helpful for her, as well as for me. Just to get that rest but, it all comes, unfortunately, so slow. There's an old German saying that "You get old so quick and smart so late." That was me.

Steve: 16:51

Did you join a support group or participate in a support group?

Marty: 16:56

People should, for sure, get involved in a support group. But because I was ignorant of the disease in the beginning, I'm talking to the psychiatrist nurse. I said, "What can I do?" He said, "you could go to a support group." Well, because I was ignorant, I thought, "I'm not going to sit around in a group of people and say, hey, you know what idiotic thing my wife did today? Ho ho ho, well, let me top this. My wife did such and such or so forth," and I wasn't smart enough to know that this disease just simply calls out for mutual kind of help, for mutual kind of understanding, for sharing of experiences. And it just took a while for me to understand that I can't travel this journey alone. I just can't because I won't survive. You listeners, please understand you don't want to become part of that 40% who dies before their loved one because of stress-related illness and support groups and sharing and having the ability to experience and to be able to feel free to share your grieving and your anxiety and your depression, just that outward going of that feeling is so much mind and soul relieving.

Steve: 18:05

Yeah, I was going to add to your comment I think that having run a support group for eight years, or helped run a support group, because really, the group runs itself, but we always laughed, because when it was a new member, they would only talk about how their loved one was doing. They would never talk about themselves. And then as they got more comfortable with the group, and if we drew them out, eventually we get to the real meat of the issue, which was, "how were they doing?" And I think that's the point you're making, Marty, is, is that it's a place for you to vent, it's a place for you to share, and you not only help yourself in that process, but you help others in the group. So support groups are absolutely essential.

Virginia: 18:47

I just find it so interesting that the both of you took care of spouses and I was caregiver to a mother, and there's so many similarities. There are differences, of course, but more similarities in the things that we need to learn and know as caregivers. It's the toughest job on the planet. It really, really is. And I just appreciate everything that you've been saying, Marty.

Marty: 19:13

Well, thanks, Virginia, sorry that you had to go through what you went through. I think Virginia, one thing that's different, and I have no scientific study on this, but men make really sort of bad caregivers initially, as we have that arrogance and that self-centeredness, which is sort of our own worst enemy. We have this pride, and we know it goes before the fall of any man and so forth. But we men just have to understand to cool it, and you're going to have these emotions, and you're going to be smart about it. Ask for help.

Steve: 19:46

Well, that's a great place to end part one. We have about cognitive disorders, prevention or treatment, should known that we were talking to somebody who has a great deal to share, and so we decided to do two parts to Marty. We're going to take a break now I'll just mention his book again. It's called My Two Elaines. It's available through Harper's. It's also available through Amazon if you wish to order it, absolutely one of the best books out there. So we'll be back. Thank you. seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.