Changemaker Marty Schreiber, Caregiving Speaker, Author, and Advocate

Words that ring like a bell: there are two patients in every Alzheimer’s diagnosis—the person you love and the caregiver they rely on. 

In this episode of Agency for Change, former Wisconsin governor Marty Schreiber joins us to share the most personal campaign of his life: caring for his wife Elaine through nearly two decades of Alzheimer’s, and transforming grief and guilt into tools that protect dignity, spark joy, and keep caregivers alive.

Marty shares vivid stories, grounded advice for navigating guilt and asking for help, and resources for caregivers seeking support. His book, My Two Elaines, distills these lessons into a guide for learning, coping, and surviving with compassion.

Connect with Marty at

·       Website – https://mytwoelaines.com

·       Facebook – https://www.facebook.com/MyTwoElaines

·       YouTube – www.youtube.com/@martinschreiber5316

Transcript

Opening And Stark Reality Of Alzheimer’s

Marty Schreiber 0:00

If there's one thing worse than Alzheimer's, it's ignorance of the disease.

Announcer 0:07

Welcome to Agency for Change, a podcast from KidGlov that brings you the stories of change makers who are actively working to improve our communities. In every episode, we'll meet with people who are making a lasting impact in the places we call homes.

Meet Former Governor Marty Schreiber

Lyn Wineman 0:31

Hey everyone, welcome back to the Agency for Change podcast. This is Lyn Wineman, president and chief strategist at Kid Glov. So after nearly 300 episodes of this podcast, there has not been a guest that has brought me to tears until today. I am talking with former Wisconsin governor Marty Schreiber, but we're not talking about politics. We're talking about his experience with his wife Elaine, who had a diagnosis of Alzheimer's and he became her caregiver for nearly 20 years. Now, data tells us that nearly one in three of us are going to be diagnosed with Alzheimer's after the age of 55. That also means one in three of us at least are going to somehow become caregivers. So Marty has written a book called My Two Elaines that speaks to his experience and provides valuable advice on how to handle a situation with an Alzheimer's diagnosis to keep yourself as a caregiver healthy and to ensure your loved one leads their best life through this terrible disease. Give it a listen. There's lots of great information and heartfelt stories in this one. Marty, welcome to the podcast.

Marty Schreiber 2:03

Well, then thank you. I'm pleased to be with you. Thank you so much for the opportunity to chat.

Lyn Wineman 2:09

Absolutely. You know, I'm really excited to speak with you. I don't get to talk to a lot of former governors. We've had a lot of episodes of the Agency for Change podcast, but I'm really interested in your story. And I'd love to start, Marty, by having you tell us about the work that you're doing as an Alzheimer's caregiver and advocate.

Marty Schreiber 2:35

Well, I learned a while back that if there's one thing worse than Alzheimer's, it's ignorance of the disease.

Lyn Wineman 2:41

Ooh.

Marty Schreiber 2:42

And ignorance of the disease by caregivers, because I didn't understand the first thing about this.

Lyn Wineman 2:47

Right.

Marty Schreiber 2:48

But also, but also ignorance of the disease by the medical profession who doesn't understand that when there is a diagnosis of Alzheimer's, there are two patients, the person diagnosed with Alzheimer's and the caregiver. 40% of all caregivers die before their loved one due to stress-related illness. And so I look at my almost 20-year journey with my wife Elaine's Alzheimer's. And I wish that there were things, there were things that I would have known better. I wish there were things I would have known sooner. I wish there were things I didn't do. And so going through the anxiety and the depression and the worry and the unanticipated grieving and anhedonia, which I'll tell you about in a minute. But but going through all of that, I thought if there is a way for me to help someone on that journey, I would like to do that. And so I wrote this book, My Two Elaine's and what I really was attempting to do is if you would tell me, for example, that your loved one has Alzheimer's and you're going to be the caregiver, I would say, please sit down with me and just visit a little bit.

Lyn Wineman 4:11

Wow.

Marty Schreiber 4:12

And I've gone on the same journey. And now I know that you're going on this journey. So if I can share with you just a few things that I have learned maybe I can help make your journey easier for you as well as for your loved one.

Lyn Wineman 4:27

You know, Marty, I'd love to take that a step further because of the people who are listening to this podcast, there are going to be a high percentage. You maybe even know how many of us will become caregivers or in the loved one's radius of somebody who has this Alzheimer's diagnosis. What are the first things that you tell someone if if they were to call you and say, Marty, my loved one just had a diagnosis? What are the top things I should know? What would you tell them?

Joining Their World And Letting Go

Marty Schreiber 5:02

Well, first of all, I would tell them that I'm I'm so sorry. Oh, yeah. I would I would tell them that to get a diagnosis of Alzheimer's is so tragic, as we know, because it can't be cured or prevented. Then I would say we cannot, you know, we cannot give up hope. And one thing that we can do, which is going to help sustain us, and that is to understand that even though we can't beat Alzheimer's today, but what we can do is help our loved ones live their best life possible. I love that. And that then becomes a realizable goal. That's something we can do, something that we can set as a goal. And then look to make sure that we live towards the moment. And so I would say please understand that you want to help your loved one live their best life possible. And then I would say one of the most important ways of doing that is by joining their world. And I would say that as long as I tried to keep Elaine in my world, you know, it didn't happen on a Thursday, it happened on a Friday. Elaine, it wasn't the Smiths, it was the Joneses. Elaine, why are you asking me the same question? What is so important then to understand the really necessity to have these moments of joy come forward to the importance of joining the world of the person who now is.

Lyn Wineman 6:43

Yeah, that is such good advice. I love two things that you said there. Join their world and live towards the moment because I could see where if you are trying to stay in your own world and pull them back into your own world, it's not going not going to work very well.

Marty Schreiber 7:06

Well, and part and parcel with that is to understand that we also have to let go of this person who once was, which is saying the same thing about you know joining their world. But it's easy for me to say, you know, let go of this person who once was. That's easier to say than to do. But it is so important to let go of that person because we can't beat this Alzheimer's, but we can help our loved one live their best life possible.

The Two Elaines: Love And Loss

Lyn Wineman 7:38

Marty, such good advice already, and we're just a couple of minutes into this. I'd love for you to tell me about the book. You wrote a book, My Two Elaines. And honestly, based on your your description, I now understand. My two Elaines. Tell us about the book.

Marty Schreiber 7:57

Well, my two Elaines, the first Elaine, that was a wonderful woman, girl, that I fell in love with when I was a freshman in high school.

Lyn Wineman 8:05

Oh my goodness.

Marty Schreiber 8:06

And I knew right away she was the person that I wanted for my wife, mother of my children, my life's partner. And so we dated and we went steady and we got engaged and we got married, and four children, and 13 grandchildren, and now 12 great-grandchildren, and my grand, my advisor. But what was so important, what she did for me was if I would run for political office, she would be the hardest working campaigner. But what was so important, if I would lose, she would never let me feel defeated. And so you ask one of the things that I will be doing as it relates to being a Alzheimer's caregiver advocate. One of the things I want to make sure that we understand we cannot allow ourselves to feel defeated because we can, as I said, know that there are things that we can do in helping our loved one live their best life possible. So there's always hope. So we have to understand that. So that's the first Elaine, my wonderful life partner helping me, letting me know I can never allow myself to feel defeated. Well, then when Elaine was about 63, 64 years of age, same person, but now the second Elaine, began to get lost driving to and from places she was going to and from for the last 10 years.

Lyn Wineman 9:30

Yeah.

Marty Schreiber 9:31

A great cook sometimes would mess up her recipes so badly. She comes up with stories that I, and so that was then the beginning of the second Elaine. And she lived with the disease for almost 20 years, about half that time with me, as I tried to do my best, sometimes ignorantly, to take care of her. And the other half of the time in assisted living memory care. And she passed away approximately two and a half years ago at a point where I could not have asked her to stay with me on this earth for another second because of what the Alzheimer's had done to her body and to her mind. And so I look back and and I think I'm so fortunate to have had what what I had. So fortunate.

Lyn Wineman 10:23

Marty, I feel like I ought to say, I'm so sorry for your loss. I'm so sorry for what you went through. But if there is a silver lining to this, it's that it happened to someone like you that was inspired to write a book and inspired to help others. And I'm really curious at what point in the journey did you say, I'm gonna write a book, I'm gonna speak out, I'm gonna help others that are going through the same.

Caregiver Burnout, Guilt, And Intervention

Marty Schreiber 10:52

Well, it was after I went through drinking absolutely too much. It was after the point where my health was so significantly affected with doctors not knowing what was really wrong with me, but in retrospect, it was really the the emotional heartache, trauma, psychological impact of trying to be an Alzheimer's caregiver without knowing about the disease. And so and also after I had this had to put Elaine into assisted living memory care, and I didn't want to do that.

Lyn Wineman 11:30

Right. It's always a hard one, it always brings a lot of guilt to people, but there comes a point where you can't manage anymore.

Redefining The Goal: Best Life Possible

Marty Schreiber 11:39

Well, two things happen. And and so you know, the question how what finally got me to write the book? This is one of the one of the moments. So my children had an intervention. They sat me down and they said, Dad, if you don't do something, you're gonna be be dead before mom. I was drinking too much, I was irrationally irritable, I wasn't getting enough sleep, I wasn't eating right, I wasn't getting any exercise, I wasn't visiting with friends, and the guilt was weighing down on me. But anyway, again, getting back to the 40% number of Alzheimer's caregivers that die before their loved ones due to stress-related illness. So, that intervention was really very powerful in my deciding for Elaine to go into assisted living memory care. But then also very important I was going to counseling finally with the Alzheimer's Association. And I meet with the counselor and she says, What is wrong? And I said, I cannot see putting Elaine into a nursing home, the key words are being putting. And she looked at me and she says, You're not putting Elaine anyplace. You are giving her an opportunity to be who she is now. Can Marty Schreiber's 24-7 nursing home take care of her? Well, the answer was no, impossible. I was, as I said, irrationally irritable, not enough sleep, drinking, all of those things. And then it hit me. What was what I was involved in was my own personal battle against Alzheimer's. Wrong. I can't beat that disease. Instead of understanding my goal, which should be to help my loved one live their best life possible. And once that dawned on me, the number of moments of joy we missed out on, the amount of time that went by where I could have done a better job of caring for my wife, not knowing that I was her lifeline and she depended upon me, and I was criticizing her and rebuking her for everything she said that was not correct and so forth. And and so about that time, then, you know, after Elaine is in assisted living memory care for a while, I said, I've got to do something because I don't want other people to go through what I have gone through if it can be avoided. And the the guilt, as you said, that associates this, you you work so hard to try and help your loved one get through a day, you do it. So now you deserve Beef Eater martini, maybe one, maybe two, maybe three. And so, but then you wake up the next morning, and because the disease is regressive, all of a sudden you've got another challenge ahead of you. So, what am I doing wrong? And you devote more time to it and you focus more on it, and less time with friends, less time for exercise, less time for eating well, less time for sleeping, and you end up being a basket case and hopefully maybe not one of the 40% that die before their loved ones due to stress-related illness.

Lyn Wineman 14:35

Wow.

Marty Schreiber 14:36

But then also along this line, I realize that so anyway, getting back to the book for a moment. So before I go to print the very first time self-published book, I find a series of notes and journals that Elaine had been keeping since her diagnosis. I want you to know that we had prayed together and we had cried together many, many times. But never until I read her notes did I understand two things. Number one, the courage that it takes to be diagnosed with this illness and move forward. The worry, you know, just she she wrote and expressed her feelings. The other is I never understood how much of a lifeline I was for her, a lifeline. And so what happened was I'm I'm her lifeline. I'm seeing her, I'm losing her a little bit every day. I'm her lifeline, but I don't act like I'm her lifeline. I don't take care of myself, and and I gnawed at that lifeline by again not getting enough sleep, and and then not eating right and not socializing. So I gnawed at that lifeline, so it became useless. And so it dawned on me. I'm not being you know, very sensible. And I realized also then that not only do I have to have Elaine live her best life possible, but I had to understand to help Elaine live her best life possible, I had to live my best life possible, meaning sure that I take care of myself. Because what good is a lifeline if you throw it to someone and it breaks?

Lyn Wineman 16:16

Wow.

Finding Elaine’s Journals And The Lifeline

Marty Schreiber 16:17

It's of no use. So anyway, the question was how did I come about writing the book? I t came about because I thought maybe I could help other caregivers learn, cope, and survive. And within that framework, then I'm now approaching a thousand presentations that I've given since roughly going back to 2017. And it's been a very special kind of experience to be able to meet with people and have them share, you know, have them share with me their experiences and how what they wish they would have known sooner, and you know, trying to assuage guilt. So the goal is to try and help caregivers learn hope and and survive. I'm going to, there's a word I've got that I wrote down and I said I'd never forget, but I have to look at it.

Lyn Wineman 17:24

Yeah.

Marty Schreiber 17:26

One thing I found out anhedonia, A-N-H-E-D-O-N-I- A. Anhedonia is a medical or a term that means too much stress or feeling flat or numb, basically caused by depression and anxiety.

Lyn Wineman 17:49

Right.

Marty Schreiber 17:50

I ran across anhedonia, the name, when I was visiting with someone and telling them that when I would complete my presentation, people would come up to me and say, Oh, thank you. I haven't laughed. I haven't laughed in a year, I haven't laughed in the last six months, I haven't. And so what I found out is that with the understanding of that term, you know, meaning lack of ability basically to feel because of anxiety or depression, that made me want to try and be even more funny, if that's the proper word, communicate and so forth, but to try and have people understand realistic things like joining the world of the person who now is, but also how important it is to laugh, how important it is to have these kinds of moments of joy where there is a smile not only on the face of your loved one, but also on our own face as well. That you become so intense as a caregiver, being worried about so many things. And to be able to take a breath and to laugh and to and to smile is a is a relief and can help the whole days, weeks, months, years journey.

Laughter, Anhedonia, And Moments Of Joy

Lyn Wineman 19:12

Yeah. Marty, I love everything that you're saying here. And when this podcast releases, I'm gonna share it with everyone I know who is in this situation. But it also occurs to me the things that you are saying are things that would be helpful in the situation of being an Alzheimer's caregiver, but also helpful in any difficult situation in life. I mean, what you've said is frame up the goal, you know, like understand what you're trying to do. I so appreciate that because once you my interpretation is once you realized we're not getting past this. And so what is the next thing? The next thing is how do I make Elaine's life as beautiful as possible in the time we have left, right? And know the audience, right? Like live in their world, like understand what's going on, and then find your joy and hope and laughter around the situation. I think those are three things that could help people through a lot of different situations. So you may be onto something that's even bigger than Alzheimer's here, right?

Marty Schreiber 20:35

It could be. There are two thoughts that come to mind, sort of. One is rather than worrying about the storm to pass to try and learn how to dance in the rain, and no matter what the challenge is. But then what my dad told me, as what he was told, he told me by his dad, and that is that when bad things happen, we can yell and we can scream and we can even revolt, or we can step back, understand what is, and then make a determination how can we make the best of it. Yeah, again, I go back to what Elaine, you know taught me, and that is to never allow ourselves to feel defeated, and so bad things are gonna happen. Yeah, it's going to just tear our heart apart. It could be Alzheimer's, it could be a death of a loved one, it could be a you know, diagnosis of a disease. So tragic, it tears our heart out. But what what are our options? Well, maybe to just simply try and understand what is, we've got to do that. And then the question is how can we make the best of it?

Lyn Wineman 21:50

Yeah.

Marty Schreiber 21:50

And easier so, easier said than done.

Lyn Wineman 21:53

I really appreciate that. You know, I read somewhere that you have described this part of your life with Elaine as the most important campaign of your life, which is fascinating because you've been through a lot of it as a career in politics, a lot of campaigns. I mean, can you speak more about that?

Marty Schreiber 22:15

Well, you know, you look back and campaigns, you know, when you lose or when you win, it's a high, high when you win and a low, low when when you lose. And all of that pales.

Lyn Wineman 22:30

Yeah.

Universal Lessons On Hope And Resilience

Marty Schreiber 22:31

All of that pales when you're faced with a situation of the hopelessness of a Alzheimer's diagnosis. And again I want to get back to the fact that things are going to happen that we're not going to like that are going to be disastrous in our lives. And somehow we've got to hang on to hope. Somehow we've got to make sure that we look at what is and make a determination of how to make the best of it. And so it's almost like there's two campaigns but that's almost like two completely different topics because you if you lose an election, okay, well life is going to go on. Your loved one has Alzheimer's well you know life is not going to go on and so I don't know maybe losing elections helped prepare you for this other business. I don't know but I feel fortunate I feel so fortunate but when I would be so Elaine helped me in everything that I ever wanted to do when we were going to high school and I wanted to I have a sailboat she would go to the Army surplus store and buy parachutes surplus and she would make a sail or when I was running for political office the first time she would and all the time she'd go door to door you know pushing the baby buggy and so and so she did so many wonderful things for me and so in a way as I look at it maybe I was blessed that I had two Elaines to love. Maybe blessed that I had the second Elaine to sort of return to her and give back to her what she gave to me over the course of her life. And she gave me well if we were 16 when we met and 63 when she started is showing signs and so forth maybe she gave me 40 years of good life and I was able to help her with maybe 20 years of good life back. I don't know.

Lyn Wineman 24:34

Yeah I appreciate that though. So Marty the book is called My Two Elaines Learning Coping and Surviving As an Alzheimer's Caregiver people who are listening that would like to get a hold of the book where can they find the book?

The Most Important Campaign

Marty Schreiber 24:49

Well certainly by Amazon and certainly Barnes and Noble I know has it but then we have a website mytwoElaines.com all one word and if anyone is interested in the book they certainly could order it through the website and also if anyone is interested in a speaker I would be more than willing to do whatever I could to help to help people better understand. One of the things I when I say help people better understand Elaine and I would have when Elaine was an assisted lived in memory care I tried to be with her as much as possible and so one day we're having lunch in the cafeteria and she looks at me and she starts to cry. I said Elaine why are you crying well she looked at me she says I am beginning to love you more than my husband. I didn't ask her what's wrong with your turkey husband I didn't do that but but here is what that meant to me okay remember our goal is to help our loved one live their best life possible one of the ways of doing that joining their world but also one of the ways of of doing that is by hearts touching. And so when when she looked at me and told me that I realized that it is not necessary for her to know my name in order for our hearts to touch. That hearts can touch with a smile or holding hands or giving a hug or singing a song together or just being together. And so it's painful yes when our loved one no longer remembers our name but that's not what is important. What is important is the hearts touching and so sometimes people say oh it doesn't pay for me to go see so and so because they don't know who I am anyway. They may not know your name but I know that hearts can touch. The poet Maya Angelou said that I may not remember what you said, I may not remember what you did, but I will always remember how you made me feel and so again that matter of hearts touching helping our loved one live their best life possible all of that is so entwined to when your loved one finally does pass away to know that you took one of the most challenging experiences anyone could ever have to face and you made the best of it and you did bring those moments of joy and that comfort to to your loved one.

Lyn Wineman 27:22

Marty 280, over 280 episodes of this podcast, no one no guest has ever made me cry but but we're getting close here. That was a very beautiful beautiful story that you told and since you brought up that Maya Angelou quote, which I love that quote, I want to ask you my favorite question and that is I would like a Marty Schreiber original quote to share with our listeners.

Where To Find My Two Elaines

Marty Schreiber 27:53

Well maybe it would be if there's one thing worse than Alzheimer's it's ignorance of the disease. I'm not talking about how the amyloids work and so forth I'm talking about the practical understanding of how we can help our loved one live their best life possible. And I would also say that if there is an Alzheimer's diagnosis rather than despair yes oh gosh you know I don't want to say we can't despair but to understand that even though we must and have feel of despair we can always understand that the goal of helping our loved one live their best life possible is a very realizable doable goal and something that can can we can look back with comfort on knowing that we helped our loved one through one of their through their most difficult journey.

Lyn Wineman 28:46

So beautiful. Marty I have really just enjoyed this conversation. I know that it is going to help people it is going to change their lives as we wrap up this conversation today what is the most important thing you would like people to remember about the work that you're doing?

Hearts Touching Beyond Names

Marty Schreiber 29:08

I think it's to understand the importance of joining the world of the person who now is. I think I think that would be be number one and there from there can flow the necessity of taking care of ourselves as a caregiver. We caregivers are are sometimes very unique and we don't like to ask for help particularly men which we're too arrogant but one thing that we men all caregivers have to understand and that is to ask for help means you're not giving up to ask for help is a matter of courage and I would caution every caregiver that they have if they don't take care of themselves a possibility of being part of that 40% of caregivers who die before their loved one due to stress related illness. And so we have to have help and we can't be arrogant and self-centered and selfish like I again I go back to when Elaine went into assisted living memory care. You know I was not going to allow my wife to go into a nursing home I was going to take care of her well pat on the back Marty Schreiber but also how about a shot in the head for being stupid because it was your worry and your pride that was stopping your wife from living her her best life possible. And so one one thing and you can understand this I share with people that in helping our loved one live their best life possible Elaine asked me once how are her parents. Well I said they're both dead. No they're not, she said, so we sort of got into it so finally when she realized that her parents were dead that maybe she didn't go to the funeral that maybe she didn't have a chance to be with them towards the end, I promised myself I would never put her her through that again. And so the next time she asked me how are my parents I said Elaine I said they're great. I said your mom likes working at church your dad likes this, oh Elaine said that makes me feel too good, I mean so good. She said well I warned the people in the audience there are two things you should know about therapeutic fibbing which is what I call it.

Lyn Wineman 31:36

Therapeutic fibbing, I love it.

Signature Quote And Core Advice

Marty Schreiber 31:39

So anyway so the next time she asked me you know I said your parents are fine and that's therapeutic fibbing and I said two things you should know about therapeutic fibbing. Number one I tried it the first year of marriage the second thing about therapeutic fibbing and I point out that not everyone believes me on this okay not everyone believes me on this so I point that out so if do you remember the story about Moses and the 10 commandments and Mount Sinai? When I was there and I helped him okay and so Moses and I are on top of Mount Sinai and I want you to know that if you want to help Moses don't call him Mo. He absolutely hates you got to call him the poor Moses okay so here we are then on top of this mountain and we got these great big huge stone tablets s o they're really big. So how do we get these down to the bottom I says to Moses he says well we're gonna pray and work so we got pray and work we got all the way down to the bottom now I look at this and here on these huge tablets was I looked at and then markings what well he said that's Arabic Hebrew I said what is he's that's the Ten Commandments I said oh my gosh I said what about bearing false witness which is the commandment against lying is it there yeah he says it's right in there I said oh my gosh I said there goes therapeutic fibbing but then I said what about that well he took me around he he grabbed me by the arm and he took me around to the back of these tablets of stone and there he said look at this Marty you call me Marty he said Moses to Marty he says look at this he said and he had written in American English where the words therapeutic fibbing is good! Therapeutic fibbing is advisable. Thou art into the world and therapeutic fib. It says right there.

Lyn Wineman 33:29

I did not know that in all of my study, I never came across that.

Marty Schreiber 33:34

Well that's why I'm sharing it with you. If I would have, you know, I'm not gonna share a thing take your time and share things with you that you already know but so people should know that therapeutic fibbing is okay, okay? From Moses, just right from Moses' mouth.

Lyn Wineman 33:52

Marty Schreiber, I sure have enjoyed this conversation. I fully believe the world needs more people like you, more books like My Two Elaine's, and I just thank you for sharing so openly with us today.

Marty Schreiber 34:08

You're wonderful for what you do. Thank you for helping people live their best lives possible, I know how dedicated and devoted and energized you are to do this and so I admire that so much and thank you.

Lyn Wineman 34:24

Thank you Marty.

Announcer 34:26

We hope you enjoyed today's Agency for Change podcast. To hear all our interviews with those who are making a positive change in our communities or to nominate a change maker you'd love to hear from visit KidGlov.com at K I D G L O V dot com to get in touch. As always if you like what you've heard be sure to rate, review, subscribe and share. Thanks for listening and we'll see you next time.