This week, we have a very special episode featuring former Governor of Wisconsin, Martin Schreiber. Governor Schreiber has been a widely outspoken advocate for awareness of Alzheimer's disease and dementia. He discusses the many beautiful and difficult moments of being a caregiver for his wife, who was diagnosed with Alzheimer’s disease more than a decade ago.
Guest: Martin Schreiber, Former Governor of Wisconsin (1977-1979), Former Lt. Governor of Wisconsin (1971-1977)
Nathaniel Chin: Welcome to Dementia Matters, a podcast presented by the Wisconsin Alzheimer's Disease Research Center. Our podcast is here to educate you on the latest research, caregiver strategies, and available resources for fighting back against Alzheimer's disease. I'm your host, Nathaniel Chin. Thanks for joining us.
Welcome back to Dementia Matters. I'm here with Governor Shreiber. Mr Martin Schreiber is a former Wisconsin governor and award-winning author of My Two Elaines: Learning, Coping and Surviving as an Alzheimer's Caregiver. Mr Schreiber is a crusader for Alzheimer's caregivers and persons with dementia who uses humor and compassion to share lessons from his journey as a caregiver for his wife, who was diagnosed with the disease more than a decade ago. Governor Schreiber, thank you for being here.
Marty Schreiber: Well, Dr Chin, thank you. I'm so grateful for the opportunity to visit with you and to be with you with all of the great work that you have done. So thank you. What an honor.
Nathaniel Chin: What does it mean to you to be a caregiver? How do you define that to your friends?
Marty Schreiber: I think defining the caregiver is to get to the point where the caregiver understands they have to join the world of the person who is now ill, and that's being a true caregiver. Because as long as I would hang on to the first Elaine, to this woman who was my wife, the mother of my children, my greatest campaign supporter and my friend, my advisor, my counselor; as long as I hung onto that, I could never really be a true caregiver with the kind of attention and affection and wonderment really to this new person. So being a caregiver to me means joining in the world of the person who is ill.
Nathaniel Chin: In your book you use the expression of meeting Elaine in her world and not trying to challenge the things that she believes, and that was most beneficial to you to enjoy the world that she lived in.
Marty Schreiber: That's correct. They call that therapeutic fibbing. And for example, she once asked me how her parents were, and I said, Elaine, your parents are both dead. Well, the shock on her face and her worry when she realized maybe she didn't say goodbye, maybe even not attend the funeral, I promised myself I would never put her through that again. And so now when she asks me, How are my parents, I say, Elaine, you're parents are fine. Your mom likes working at church. Your dad likes to doing his sports. They're so happy. Oh, Elaine says, that makes me feel so good. And that's therapeutic fibbing. If I had thought about therapeutic fibbing 57 years ago when I first got married or even when I was running for public office ... . But those are things to do to join their world.
For example, even getting rid of the word no, and also to understand how important redirection is. There's a saying that rather worrying about the storm to pass, to try and learn how to dance in the rain. Now no caregiver will ever dance, but the fact of the matter is to better understand this disease, to better understand the symptoms, and to better understand the importance of joining the world of the person who is ill, that's going to make such a big difference in reducing the anxiety, pain, hurt, depression and some of the sadness.
Nathaniel Chin: How does that role of a caregiver change as the Alzheimer's disease progresses?
Marty Schreiber: That's one of the biggest challenges to caregivers, because what happens is, as we know, this disease is progressive. You give every ounce of love and strength and energy to your loved one, and you wake up and the next morning you're five paces backwards. So the question is, what am I doing wrong? What should I be doing better? I've got to work harder, I've got to pay more attention. And all of a sudden this guilt begins to grab hold of you that you're not doing a good enough job, you're maybe not focusing enough, you're maybe not doing what you should be doing. When we talk about changes as the disease progresses, we're talking about a direct change on the impact of the caregiver's life. But then we're also talking about the direct change of the person who was ill. Early diagnosis, gosh, Elaine and I could do wonderful things together; we could enjoy being and doing things that we do in our normal process. And then as the disease progressed, I would have to learn to find out, like a detective, what kinds of things does Elaine like to do to keep her busy and also useful. And so the fact of the matter is, as a caregiver, you have the opportunity to constantly look at how best to join the world of the person who is ill because the person who is ill has their life changing on a periodic basis as the disease progresses.
Nathaniel Chin: And as you talk about that change, what are some of the things that surprised you as you embrace this role of a caregiver for someone who is going to be changing?
Marty Schreiber: I think what surprised me was the toll that it took on my own health, my own psychology, my own mental wellbeing. Sometimes I felt very guilty because I thought I was the only one that became angry or frustrated with the repeated questions, or that the car keys ended up in the dishwasher. We would go away and spend time on a trip, and we're ready to go to the airport, and lo and behold, I looked and the suitcases were empty because Elaine had unpacked everything. What happens then is, as a caregiver, you have to begin to understand that your role is going to be constantly changing because the world of the person who is ill is constantly changing.
Nathaniel Chin: Your book works to address this and in essence raising awareness, promoting education, and fighting ignorance. So I wonder then for people with loved ones just diagnosed with mild stage dementia, are there ways to prepare for being a caregiver, or rather, what advice do you give them?
Marty Schreiber: First of all, when there is a diagnosis, my God, it's a horrible diagnosis, but it's not the end of the world. And I think one might say this is the beginning of our opportunity to enhance our relationship, to enhance and prepare our bucket list, and go about and doing things. And so, Gosh, you know, to think about the diagnosis and all this is over with now, nothing but misery and pain. We're going to crawl under the covers and hide in the fetal position. And that's the end of it. That's such a huge mistake. In the early stages, Elaine and I had many wonderful experiences and opportunities, and we could talk things through and we could share and understand that no matter what the end might be, that our life together was worth it all. It is so important for caregivers and for the person in early diagnosis to maybe say, Hey, life is now beginning. I think you're going to be able to have those kinds of talks and sometimes you're going to cry together, you're going to pray together, and you're going to share hurt and pain. But the fact of the matter is that as you travel this journey together, I think you both get strength from it. And that strength then is built up in a reservoir, as the disease progresses, where you now understand more the courage of the person who is ill as how they were able to go forward even with the diagnosis.
Nathaniel Chin: One of the things you said in that answer was that in the beginning you live life to the fullest, but also you are planning. You're discussing what the future holds. In my clinic, I always feel like that's so important that people know you can have a very meaningful life right now despite this diagnosis, but we still need to prepare for change.
Marty Schreiber: Well sure you do, and it's not fun to talk about. I mean who wants to talk about it? Nobody. But the fact of the matter is, it could be a golden moment. It could be a golden opportunity. I mean, how many times is there a tragedy and you never really had a chance to talk with your loved one to explore and understand and ask questions and share and so forth. And, you know, I'm not saying it's a whoopie ding kind of thing, as a happy, happy time. I'm just saying that there are certain things in life that are very important and sharing those early emotions, caring thoughts, and exchange of love ends up being something that you talk about in a bucket list. If you understand that depth of experience with one another, I think again that builds up a reservoir of strength for the caregiver as the disease progresses and you see what's happening in the life of your loved one.
Nathaniel Chin: Governor Shreiber, this is sort of a personal question, but I think it's one that many of my patients ask. Was it difficult for you to make the decision to transition Elaine's home to assisted living?
Marty Schreiber: There's no question, but that was really one of the very toughest decisions I think I ever made in my whole life. I mean here you had the marriage vows that I will take care of her life and death and so forth, and here all of a sudden I was thinking about putting her someplace different and not taking care of her. I go to counseling with the Alzheimer's Association, and I was talking with the counselor, and she asked What's wrong? And I could not see putting Elaine into a home -- and the key word there being putting -- and the counselor looked at me and said, You are not putting Elaine any place, you are giving her an opportunity to be who she is. Now the counselor asked me, Can Marty Schreiber's 24 slash seven nursing home take care of Elaine? Well, the answer was no. It was affecting my health. I wasn't getting decent sleep, and I was sleeping by the door for fear she might go out. I was becoming more anxious and had irrational irritability. We would go for a walk and five minutes later go for another walk, and I just could not handle the 24 slash seven anymore. And once the counselor explained that as helping Elaine be who she is now….
But then there's one step further. This Alzheimer's is a horrible disease, and I was not going to let it defeat me. My battle became myself versus this disease rather than answering the question, What is best for Elaine and even what is best for me for my health to continue being a caregiver, plus a father plus and grandfather and so on. And so my wife going into assisted living memory care was one of the most difficult decisions. But for those of us that have children, we can remember when the first time we took our oldest to a kindergarten class; oh, the child is crying, we're crying, man, you know, and so forth. But the fact of the matter is you had to do it because life goes on. So the young four year old that we put into kindergarten is now doing well. We did well. And, and Elaine's life is better because someone is now helping her be who she is now. I've been able to pass the baton to people who I know are going to be with her 24 slash seven. And I take great comfort in knowing that I can be doing the best possible for her at the place where she now is in her life.
Nathaniel Chin: Now you're a fierce advocate, and I have a question about process for you and your learning experience in that role. You've taken your personal experience as a caregiver and you've really turned that into fighting for awareness, for policy, for Alzheimer's disease. What have you learned about Alzheimer's disease in your work to raise awareness to educate caregivers and hopefully bring an end to this disease in the future?
Marty Schreiber: I think what I have learned is that if Alzheimer's is bad, ignorance of the diseases is worse for everyone. I can be mourning, but if I don't understand the symptoms of the disease, if I don't understand what my loved one is going through, if I don't understand the ways of dealing with it, if I don't understand the importance of joining their world … I think that is, by far, the most significant thing that I learned, and I think one of the reasons I wrote the book. Because we don't know enough about this disease. And if we don't know enough, we can't cope. And if we don't, if we can't cope, we can't survive. My goal in writing the book was to educate caregivers and in understanding better this disease; but it is also for pastors and priests, ministers and employers and so forth, to help them better understand this disease.
This is a side note, to understand that as a caregiver, I have to realize that everyone handles this disease a different way. So I can beat myself up becoming discouraged and frustrated because maybe Elaine's sisters and brothers should be doing things better or differently, that they should be helping and visiting and so forth. Or maybe one of my four children isn't doing things the way they should or could be doing in my opinion. Well, the fact of the matter is, I am now beginning to understand that I have no right to dictate how any one of Elaine's loved ones handles this disease. And if I can understand there are certain things I can control and should control, certain things that I should not control and need not control, and should not control, therefore, I can let go of things, and my life is going to be reduced with stress and strain. My life is going to be improved.
And then I want to get to the other point of better understanding this disease. Elaine, once we were having lunch and she started to cry and I said, Elaine, why are you crying? Oh, she says, I'm beginning to love you more than my husband. Well, I didn't ask her what's wrong with your turkey husband. I didn't ask her that. But the fact of the matter is that our souls were touching, and so when I joined her world, I understand that every time she doesn't know who am, it's not another body blow. It's not another blast to my caring and being as a person. If she doesn't know who the four children are or the 13 grandchildren, if she doesn't know that, that's okay because she is a different person and she has no more responsibility to know who they are than if someone would walk in off the street because she's a different person. So I want to get to the point and that is if you can let go of the person who once was and embrace the person who now is, we can better share with their heart and we can better share with their soul some moments of joy that ordinarily wouldn't be there. But as long as I would hang on to the first Elaine and expect her to know who I am and recall me by name all of the time and so forth, It's not a wise thing to do. It's like someone who maybe has lost a leg expecting them to run 100 yard dash. Well, the fact of the matter, it's different. So we adjust. And I can tell you, I was thinking the other day, if Elaine would be well what we probably would be doing. Well maybe we will be out in Colorado looking at the trees and the mountains and so forth. And we will be holding hands and we would be sharing, you know, our love for one another. Well, as I'm thinking all this, wait a minute, what am I doing? Well, Elaine and I were sitting at the assisted living facility, we were looking out the window. We saw the rustling of the leaves on the trees and we were holding hands and we were exchanging love for one another. And I said, who has to pay for that? Who has to stand in line to get the airplane tickets? Who has to stand in line and go through the service, you know, getting their self x-rayed? Who has to take off their shoes? Who has to put the shoes back on, get on an airplane, worry about where I'm sitting, get into luggage rack. No, I can do it right here at assisted living, right where Elaine is.
Nathaniel Chin: That's a wonderful story. Thank you again, Governor Schreiber, for being on our show. And I do hope that the next time you're at our Alzheimer's Disease Research Center we can sit down and talk again.
Marty Schreiber: Dr. Chin, thank you. And again, thank you for the great work that you are doing.
Nathaniel Chin: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. 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 was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments email us at firstname.lastname@example.org. Thanks for listening