Former Wisconsin Governor Martin J. Schreiber 10/22/24

(This interview has been edited and condensed for length)

Selma:  I just wondered if you could share just a little bit about your story with our potential readers who may not be familiar with it.

Governor Schreiber:  Well, thank you. Well, first of all, my pleasure and honor to be with you. I thank you for that. So, Elaine and I met when we were freshmen in high school back in 1957, long time ago.  But, anyway, we sat next to each other in Latin class, and gosh, I fell in love with her right away. And so we dated. We went steady. We got engaged -- 4 children and thirteen grandchildren, my friend, my adviser, my partner, my companion, everything you could ever want in a life's partner.

I was very much involved in politics and in running for elective office. When I would run, she'd be the hardest working campaigner. And if I would lose, she would never let me feel defeated. I think that's really the key cornerstone as it relates to what I most remember … was the impact that Elaine had on me. And that is, we may lose, but we can never allow ourselves to feel defeated. So, she ingrained that in me. Maybe not as strong as if she would have liked, but a little bit.

But then what happened is, when she was in her mid-sixties, she began to get lost going to and from places she was going to and from for the last 10 years … She would come up with stories about what happened, and it never occurred. She was a great cook and sometimes messed up … her recipes so much that she would cry. So that was the beginning of the second Elaine. And now when I think back … from diagnosis till the time she passed away two years ago, it was roughly 18 years.

And I think about that. And I call the book my two Elaines because the Elaine who once was, and then the Elaine with Alzheimer's. But there were many Elaines. There was the first Elaine who I fell in love with and had this wonderful marriage with. And then there was a second Elaine who was diagnosed with Alzheimer's. And then there was the Elaine who couldn't walk. And then there was the Elaine who couldn't feed herself. And then there was the Elaine who couldn't talk. And then there was Elaine who couldn't take care of herself … it pointed out to me that if we can help caregivers understand what's sort of going to be happening, it can sort of make things easier. So that's just a brief summary, Selma, about this and, you know, gosh.

Well, I don't know…. one of the things that I finally had to do was to make the decision to put her into assisted living memory care. And that's really, for caregivers, one of the toughest decisions that they could ever make in their life. And what I learned in making that decision was that I was selfish, and my selfishness was ego. I was gonna take care of Elaine, period. Till death do us part, period.

Well, I go to counseling. Counseling said, “what's wrong?” And I said,… “Fact is, I don't wanna, I can't see putting Elaine into a home.” And the keyword there being putting. She said, “You're not putting Elaine in any place. You are giving her a chance to be who she is now.” And it just sort of hit me like someone knocked me aside the head and, understand and realize that I was [in] this personal battle with Alzheimer's. That's not my job. My job is to help my wife live her best life possible. And once I got that into my head, I then began to realize how might we help other people.

One of the reasons, one of the ways to do that is to realize we can't beat Alzheimer's… can't be cured or prevented any more than 20 years ago. But today, instead of fighting the disease head on, we can make the determination to have a very realizable achieving goal, and that's to help our loved one live their best life possible. That's an achievable goal, and I think from that, a caregiver can take some hard ones.

Zack:  How did you continue your duties, responsibilities while being a caregiver?  How were you able to  take on roles as a governor, politician, provider, and also as a caregiver? And, of course, all the other roles – spouse, father and grandfather?

Governor Schreiber:  Let's play that all out there. Caregivers have responsibilities in their life. And you add on the dimension of Alzheimer's, there's a couple of factors that come into mind. One is if Alzheimer's is bad, ignorance of the disease is worse. And so when you say how does someone cope with this, well, number one, to understand that we've gotta learn more about it. What makes this job of a caregiver so very difficult in addition to all of the emotional … what makes this so challenging is that … Alzheimer's is not what you call a chicken casserole disease.

Hypothetically, if my employer knows that my loved one had open heart surgery and laid up, they'll understand it, and they may make an announcement. People bring me chicken casserole…. Now there's Alzheimer's, and because people don't understand this disease, they don't know what to say. They don't know what to do, and there is no chicken casserole because people don't know what to do and people don't know what to say. So, what happens then is the job of a caregiver becomes even that much lonelier, and at times, even feeling abandoned by friends and employers and people that have been there for a long time, because they don't know what to say. They don't know what to do. They stay away.

Now the caregiver is really out there alone. So, the question, how did I survive? Sort of by the grace of God. Every once in a while, a wonderful person would come along and help with something or another, and I tried to have my colleagues understand what the challenge was. And again, because I maybe didn't do a good enough job explaining and because people are ignorant of this disease, there were some really rocky moments… it's tough enough being the caregiver for your loved ones…. So, it all adds up to my wanting to write the book to help people understand and realize that this business of caregiving is something that is pretty challenging, and we need help. We caregivers, we need help.

Selma: Was your job more difficult as a caregiver because you were a public figure?

Governor Schreiber:  Yeah. Well, first of all, the voters really did me and Elaine a great favor by voting me out of office before she developed Alzheimer's. And so, I was not in public office and therefore that was not a part of it. But I did have colleagues and I had a government relations firm, and well, by the grace of God, I was able to spend time with Elaine on that…. I was fortunate in that it was my firm and my colleagues had to sort of roll with it because it was my firm. But my heart goes out to someone who's working a nine to five job. And in working that nine to five job, is constantly challenged by how best to take care of their loved one.

Some have told me that they install cameras at home and, you know, are able to flick on those cameras while they're at work and watch what mom or dad or so forth are doing, and that gives them some comfort. But then again, you look at when further on needed care is necessary. My goodness, can you quit your job? If you quit your job, can you afford to live without that job? … So, if what we tried to do, was to develop a program to make employers more aware of Alzheimer's, to try… to make it more of a chicken casserole disease where people understand it better and therefore are more willing to help out and give some type of break, some type of assistance…. I want to say two things. I had a friend who died very suddenly and there was a funeral. And people came by, to express their regrets and their sympathy and so forth.  There was closure… A caregiver never really gets closure. They see their loved one pass away a little bit every day in mind. And they don't realize that they're also going through a process of grieving.

And so, you add on the grieving aspect and unless a caregiver, and unless an employer, unless someone close to the person can understand all these different layers of emotions that are just so challenging emotionally and psychologically, unless the boss understands it, it's just so very, very difficult to go on. The other aspect I wanted to mention, and that is helping Elaine live her best life possible…. I gave a presentation on a book…. We made Barnes and Noble. And in the course of the discussion, a woman stood up and I remember her name was Lisa. And she was in her, like, mid/late forties.

She said she's at work and her mother calls, “You gotta come home right away. Dad's acting really strange.”…luckily, she could get quick away from work, and so she went home. She walked into her home and walked into the living room, and her father was standing, and he was, like, fishing. He would throw his wrist out like the clip of a fishing plug, and then he would reel it back in. And so, she said, “Well, what you doing, dad?” And he says, “Well, I'm fishing. “Well,” she says, “Can I fish with you?” He says, “Sure.” So, what happened was she said she stood next to her dad, and she did the same fishing with her dad. She said that experience was one of the best communications she had with her dad… in a long time. So, now the episode is over and she's leaving. And as she leaves, her mom says, “Lisa, what do I ever do if this happens again?” And Lisa said, “Mom, get in the boat with dad. Join their world.”

And so, the caregiver, if we are mentally aware and understanding, we join another world of the person who now is. And if we do that, it changes who we are as a person because we're switching worlds. And, again, employers hopefully might understand that, you know, it's not only the fact that your loved one is losing their memory. It’s also the fact that we've in their process of memory loss… try and help them on their journey. And that sometimes is gonna take a refocus, retiming of activities and a change in how we look at things and how we do things. And God, please have employers understand the challenge of caregiving and acknowledge it and do what they can to help… Whether you have someone with dementia or not…maybe HR… or EAPs should be sharing things like that.

… My whole life now is trying to visit with as many groups as possible…I do so much want to get before human resource people and employee assistance program people so they can understand it…. When I was sort of growing up, or when my children were growing up, there was a Dr. Spock. Dr. Spock had a book. You would not dare have a baby unless you had a Dr. Spock book to tell you what to do. People have told me my book is the Dr. Spock book for caregivers. In other words, it gives sort of an inside understanding of what it's like and what really you can do in order to make life a little bit easier.

I'm trying to get before also long-term care life insurance companies…. Here's the point. When there's a diagnosis of Alzheimer's, there are two patients. There's the person who is ill, and then there also is the caregiver. And 30% of caregivers die before their loved one. 40% of caregivers … die because of a stress related illness. And so, there is no question but that this business of caregiving takes its toll. And because of that, so important, please, employee assistant program people, please, human resource people, understand that when this disease is within the journey of one of your employees, understand what it's like…To have someone acknowledge that you're a caregiver and knowing what is going on is just significant relief. Just a little bit, just a little dab of acknowledgment can do a lot.

Selma:  Governor, because your story is just such a beautiful story, I would like to ask you to share a couple of things that gave you the most joy in caring for your wife.

Governor Schreiber:  Sometimes just a smile on her face.  Sometimes just knowing that she's well-cared for when I can't be with her. Sometimes feeling that she's comfortable. And the opposite of that… the doctor said we should be walking. Walking is the best exercise for the brain…. we gotta get this walk in 30 minutes. That's enough of a walk as far as I'm concerned. We're walking, and they say, “Oh, look at the beautiful flower.” …we've got to keep on walking… Moments of joy I have passed up many times because of my ignorance…. What could have brought me more joy was joining Elaine’s world as soon as I understand what was happening. And, therefore, she sees a beautiful flower, we can look at it together and enjoy it.

Now let's go forward then as Elaine is roughly ill for 18 years, and half of that home with me, half of that in assisted living memory care. So, one of the things then that gave us joy, …I would sit by a window with her, and we would watch the leaves roll across the lawn. That was wonderful because Elaine was content and at ease. We played a lot of Patsy Cline music, and sometimes she would smile. And so, all of those things.

One experience that I had, and I talk about it in the book about, you know, giving me joy…. Elaine and I are having lunch at assisted living in the cafeteria, and she's starting to cry. I said, “Elaine, why are you crying?” “Well, …[I’m] beginning to love you more than my husband”…. But here's what that meant. It meant that it was not necessary for her to know my name in order for our hearts to touch. It meant that we could have our hearts touched by holding hands or by giving a hug. And I try and have caregivers understand, yes, it hurts when your loved one does not remember your name. But by the same token, that's not the goal. The goal is to help our loved one live their best life possible. And if hearts can touch by holding a hand or by giving a hug or by singing a song, how great is that? And so, Selma, … what were some of the greatest happinesses and so forth? I look back, and I missed out on so many of them.

Zack:  So let me ask you this, Marty, if you don't mind. In one of the podcast episodes, I heard you talk about that you regretted a little bit not thinking about your four kids, that they're also losing their mother. That you were focusing on yourself. And that was very vulnerable of you to share that. Well, we have the same challenges with caregivers not sharing things with their employer or their manager because they're not picturing the manager in this. It's all about them.  Do you have a tip or a piece of advice as to how maybe an employee can bring this up? Or maybe vice versa, how can a manager who is unfamiliar with any of this have a conversation with an employee who might be a caregiver?

Governor Schreiber:  I mean, it's a difficult topic to think about if you're not in it or experiencing it…. But I think one of the reasons that it's so difficult is, let's assume that I am your boss. I'm your employer and you come to me and say, Marty, my loved one is ill and so forth. You may… be fearful of losing your job… You know, I gave a talk to nursing administrators. I talked to this one administrator, and he said when … an employee comes into the door with a problem, that's my problem. Because that employee's problem is gonna keep them from performing as well as they possibly can.

If you've got an up-to-date manager who understands that if one of their key people or one of their people has a problem, that also is their problem because it keeps [them] from performing…. I have the worry about there's a possibility of losing the job, because they're not gonna be as attentive and so forth. Then, you know, … the person as the caregiver is gonna be extremely reluctant to wanna share anything like that and really try and hide it. And so, I, in answer to your question, I think we've got to look at what kind of manager, what kind of company, what is their position regarding human services and employee assistance program and so forth…. I don't have a clear-cut answer for you.

Zack:  I think you did it without realizing it. I mean, you really hit it. You said, do your best as a manager. I'm not gonna put words in your mouth, but from what I heard you say, do your best as a manager to reduce any kind of fear so that people can approach you with their problems because their problems are gonna be your problems.  And if you don't know about them, you can't help them. That's what I heard you say.

Governor Schreiber: Well, that's what I think I tried to say.

Zack:  Oh, my goodness.  We cannot thank you enough.

Selma:  You're such a wealth of information and experience, and everyone can benefit from your wisdom and the caring that you gave to your wife. You didn’t only talk about the successes of caring for her, but you also pointed out some areas where you wish you had done some things differently. And that's very helpful.

Governor Schreiber: Well, and then I think about the journey, you know, almost 20 years, and I don't know how I did it. You know? I don't know how other caregivers do it…. And thank you for what you do.  So, we're talking about my misery, but we're talking about what you have done that may help alleviate other people and help them along on the journey. So, you're pretty neat, you guys.