Episode 231: Caregiving Love: Martin Schreiber's Journey with Alzheimer's and His Two Elaines

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Episode Transcript

Imagine your spouse falling in love with you over and over again. Sounds magical doesn’t it? What if they kept falling in love with you because every morning they woke up they’d forget who you were? How would that feel? Today I have the author of the book My Two Elaines, Former Gov of WI Martin Schreiber with me today to talk about being a caregiver for his wife who had Alzheimer's. 

Let's begin.

Former Wisconsin Gov. Martin Schreiber is an award-winning crusader for Alzheimer’s caregivers and persons with dementia. Marty’s book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, was rated as the No. 11 “Best Alzheimer’s Book of All Time” by bookauthority.org, and was named to Caring.com’s list of “Best Caregiving Books”. Marty helped the Alzheimer’s Association launch Operation: Stronger Together in 2015. This multi-year awareness program has helped the Southeastern Wisconsin Chapter connect record numbers of families to education and resources that are vital to successful caregiving. He also collaborated with the Wisconsin state government and various business groups to help create the online Dementia-Friendly Employers Toolkit, which is now used by human resources departments and employee assistance programs. These initiatives have led to Marty being recognized with awards from the Alzheimer’s Association and other organizations. I am honored to have him on the show today.

Charlotte Bayala: Thank you, Mr. Schreiber for being here today. 

Martin Schreiber: Oh, hi, Sean. It's a pleasure to be with you. Thank you very much. With, the holidays coming on and the challenges of, uh, caregiving, again, I want to just tell you with admiration how much you help people and make a difference in In people's lives and helping them understand that they're able to help their loved one live their best life possible, 

which is quite a wonderful goal. And you do that. So thank you 

Charlotte Bayala: very much. Thank you. I really appreciate that. Thanks. Um, so let's just let people know, a little bit about your background. A lot of people might know you from your career in Wisconsin politics. Most notably, you were a member of the Wisconsin Senate, the 38th Lieutenant Governor of Wisconsin.

and the 39th governor of Wisconsin. But today we are going to talk about a different part of your life, being a caregiver for your wife, Elaine. So if you can tell us a little bit about how you became a caregiver. 

Martin Schreiber: Well, as, your friends will know, and as you know, no one decides I'm going to become a caregiver.

And, uh, My wife Elaine was diagnosed with Alzheimer's approximately 20 years ago now, passed away approximately two years ago. And with that original diagnosis going back at that time, I had no concept of what a caregiver was. I had no concept of what was in store for me or for Elaine. So as, as the disease, the Alzheimer's disease progress.

I found myself almost becoming more immersed and I would even say drowning in questions and confusion and frustration and despair and grieving and, sadness and, it was really tough. And that whole experience as my wife's disease. Progress. So also then did my caregiving increase, but the trouble is if we're not smart enough, the increased challenge of caregiving supersedes our ability to learn and understand that disease.

Therefore, making caregiving even that much more challenging and that much more difficult when maybe it wouldn't have to be that bad. And so, journey of a caregiver is, one of, uh, it's almost a Charlotte. It's almost like. Going up a mountain, and in the beginning you're fresh, and you know, you've got vigor, and you don't really understand, you know, the challenge, and as you go higher, it's harder to breathe because of the air, you go higher, it's harder to climb because it's steeper, and oh my gosh, and, uh, and so then we get to the point, Charlotte, where I began to understand this disease and I, I concluded that if there's one thing worse than Alzheimer's, it's ignorance of the disease and I was ignorant and I did not know, for example, one of my basic overall responsibilities.

In order to help my wife live her best life possible and to help me live my best life possible. I did not understand from the beginning that I should join her world because you're dealing with the physical challenge of of caregiving, and then the emotional challenge of realizing that your loved one's mind is in a different place. And once I understood that joining her world made a difference in her life, but also in mine, of all the things that I could suggest to a caregiver is to understand this disease.

And 1 of the 1st points to understanding this disease is joining the world. Of the person who now is, and it's very difficult because in order to do that, we also have to let go of the person who once was. Right. We know how very, very difficult that is. So, but then then one other aspect and this is what what makes sure.

Involvement in your work. So very, very important. Elaine was diagnosed 20 years today, 20 years ago. It could not be. It could not be delayed or prevented today. It cannot be delayed or prevented. So we know we can't hit this disease head on.

But what we can do is challenge ourselves with something which is doable. And something which is rewarding, and that is to help our loved one live their best life possible. That's a doable, and to help also us as caregivers live our best life possible, because if we don't, we're no good to our loved one.

Exactly. 

Charlotte Bayala: That makes no sense. Yes, I mean, I think that For a caregiver to be able to get to that place, they have to first accept that they're a caregiver, and then you even took it a step further, enter the space and the, the world that your wife was living in, and if you aren't able to do that, then you're always living in opposition of your reality.

Basically, if you can't accept the reality that now things are changing with your wife or your husband or your parents who have Alzheimer's, and that you're trying to do everything you normally did before they were diagnosed and now are trying to do everything altogether, it creates a lot of pain, a lot of pressure, all of those emotions that you mentioned, which I think you hit every single one that a caregiver feels, in the beginning when you listed grief and sadness and anger.

 I think this is the first time that I've really been able to have a conversation with someone who's said what I had to learn was living her life with her because then you're not struggling to try to make her fit into the lives that you guys had together. You created a new life living with her so that the two of you can actually enjoy life together as much as you could.

Um, so I really enjoy that you share that. Yeah, 

Martin Schreiber: well, Charlotte, another aspect of this, uh, you know, I wrote, my book, My Two Elains, because I wanted to do what I could to help caregivers learn, cope, and survive. And so I wrote the book and I'm about ready to go to print. And lo and behold, I find a series of notes and diaries that Elaine had been keeping since her diagnosis.

And I went through those notes and diaries, and we had prayed together, and we had cried together, but never did I understand two things. One, the courage that it takes to be diagnosed with this illness and continue forward. But also never did I understand how important I was in her life as her caregiver.

So imagine this, you're worried about the fact that you're losing your memory. And someone says, Elaine, it didn't happen on a Thursday, it happened on a Friday. Elaine, it wasn't the Smiths, it was the Joneses. Elaine, why did you put the car keys in the dishwasher? Elaine, I just told you five times already that we're leaving at 10 o'clock.

Elaine, why do you ask me that? And so here your loved 1 is losing their memory. They don't remember they put the car keys in the dishwasher. They don't remember they ask you the same question 5 times in a row and it becomes so exhausting and so frustrating as a caregiver until you get to the point where you understand.

That they're in a different world, and what we can try and do is to figure out ways to help our loved one live their best life possible. And Elaine, for example, asked me once how her parents were. Well, I said, Elaine, your parents are both dead. Well, the shock on her face when she realized she never said goodbye to her parents, much less attended the funeral.

And so. When she asked me again the next day, I said, Elaine, your parents are great. I said, your mom likes working at church. Your dad likes his, uh, his sports. Oh, she said that makes me feel so good. Well, that's what I call therapeutic fibbing. 

Charlotte Bayala: I love that. 

Martin Schreiber: Therapeutic fibbing can sometimes make the difference in, in the emotions. And I mean, You know, I described what I felt, you know, caregiver, but imagine what our loved one feels as they know that they're dealing with this disease and sometimes their understanding of the challenge.

Sometimes they're not really within the capacity of understanding it. And so, um, I ran across this quote just the other day, and I, I want to just read it for a moment. It says here, I can fight, rebel, and even resent what is happening, or I can surrender to what is.

and focus all of my energy on creating something better. And so, caregivers, it's not easy, but to think that we can focus our energy on creating something better, we can. As devastating and hopeless as this disease is, we can do things to create something better. And therein lies, I guess, the salvation and the grace of it all because we have that opportunity.

Charlotte Bayala: Right, but to get to that place, um, requires at least a little bit of a grieving process. And I know that When you talk about it in your book, it wasn't an easy thing it took time for you to realize that moving into her world was something that needed to be done in order to enjoy life with her.

How difficult was that to let go of who you were, reframe your relationship with Elaine? You talk about the first Elaine and then the second Elaine because you were able to acknowledge that she's changed, but that had to have meant that your relationship as a husband to your wife also changed.

And then it was intertwined with the Complexity of also being her caregiver, 

Martin Schreiber: the probably the greatest sadness one can experiences to say goodbye to say goodbye to a loved one. And we don't want to say goodbye. We don't want to let go of this person who once was. The opposite of that is to extend a greeting and say, hello, you know, how are you a new plan, a new opportunity, uh, something we had never envisioned doing before and, uh, a new challenge.

Uh, it took me a long time, Charlotte, to get to the point where. I understood even what was happening, and you mentioned grieving, but one of the things that we caregivers don't know about, I think, is the fact that we are grieving, you know, I, I had a friend who died of a. Of a massive stroke, and very suddenly snap of the fingers, ordinarily healthy and so forth.

Well, there was a, um, a funeral and people express their condolences and their sympathy and there was closure. Okay, as tragic as this was, there was closure. Caregivers never get closure. So they keep on seeing their loved one, uh, mind, uh, pass away slowly like that. And as it passes away, we're going through a grieving process.

But... We don't acknowledge that. One of the things that you have been helpful in doing, and that is to help caregivers understand the very difficult, challenging, but important aspect of making this responsibility easier, that is to understand what is going on. To know that we've got these emotions and, and to try and deal with them.

Now, then we get to the next point, how important help is. Not me, I'm a man. I don't have to ask for directions because I know everything. And so I think we, we're not very good caregivers because we think we can do everything ourselves.

 What goes on then is even something worse than that. We think to ask for help is giving up, you know, but to ask for help means you're not giving up, if we're surrounded by an enemy, and we know things that are hopeless, but going for help may make a difference, we go for help, right?

But the next step should be, and to go for help is a matter of courage. So for we caregivers, particularly men, male caregivers to understand that we cannot do it alone. If we really want to help our loved one live their best life possible. And if we ourselves want to live our best life possible. And it's hard. It's hard. And if there's friends of caregivers, I then generally suggest that one to acknowledge. What our friend is going through or relative is going through as a caregiver. That's one thing to do. But then to just take the next step forward. And instead of saying, you know, what can I do for you.

Well, what can you okay I'm not I don't need your help. Thank you. But could I maybe go to the drugstore for you. Oh, wow. Yeah. I call this disease not a chicken casserole disease. Hypothetically, if I have open heart surgery and I come home and I'm laid up, people bring me chicken casserole.

If I have a busted leg, people bring, but with Alzheimer's, because people are ignorant of this disease, they don't know what to do. And so instead of bringing chicken casserole and helping, they shy away, they stay away because they're uncomfortable, they don't know what to do. And then, the additional negative part about that is, the caregiver feels even more deserted.

Because the friends don't mean any harm, but they don't know what to do. Yeah. They stay away. 

Charlotte Bayala: Yeah, and you talk about that, a good deal and you're very open and vulnerable about how caregiving, as a man was difficult in your book, and I really appreciate that because I feel that there, there isn't always a conversation about how caregiving is different for men than it is for women.

Because if you're the type of person who lives by fixing things, and you find that your wife has a disease that cannot be fixed, That is difficult to come to terms with, and then in learning then how to not only care for your wife, but maybe even care for yourself in a different way than you had before.

And caring for yourself is not an easy thing to do. What caregivers really need is for someone to say, Hey, my wife is going to come and sit with your wife, and then you and I are going to go for a walk or, you know, pull you away to take some time.

Away and just be a person and not that caregiver all the time. What was your experience, in learning how to now take care of yourself with all these other demands because you've had a, you had a busy life before that, but maybe not even near, um, as demanding as. When Elaine was diagnosed and your life changed 

Martin Schreiber: I mentioned, I found a series of notes and journals that Elaine had been keeping each, each chapter of my book begins with some notes from Elaine.

Yeah, we see her regression. We see this disease progressing by her notes and her confusion. I said. That we had prayed together and cried together. I said also that I never understood the courage that it takes, but also in her notes, never did I understand how important I was. In her life. And so here is what I want to talk to the caregivers about.

Okay. And that is, we've got to keep ourselves healthy. I use it. Let's assume hypothetically. That every one of your viewers I can take because I won the billion billion dollar lottery. We're all going together and we're taking a Caribbean cruise. That'd be Charlotte's cruise. So we're all on Charlotte's cruise.

And one of our, our viewers falls overboard and we throw them a lifeline and they're going to save them and they grab the lifeline and it breaks. Well, caregivers are the lifeline to their loved one. And, uh, what happens is because We don't get a proper diet because maybe we're lacking a lot of sleep, uh, because we don't get enough exercise, because we don't socialize, because we're letting this pressure and tension get to us.

What we are doing is, by doing that, we're gnawing a little bit on that lifeline. Every day. And so what happens is that lifeline becomes weaker. Okay, now our loved one needs help and we throw them the lifeline and lo and behold, it breaks. Why does it break? Because we ourselves are the one who broke. Yeah.

And so, you know, I wish it would be easier, but, uh, caregivers, um, we're in this, Okay, It's a hero's kind of work, and to be smart about trying to make the best, and I'll just go back into it, or we can focus all of our energy on creating something better, and just by taking care of ourselves, we're helping create something better.

Charlotte Bayala: Right. And I think so many caregivers need to hear this message in multiple different ways because a lot of the time I hear caregivers say, I don't have the time, I feel like I'm selfish if I want to do something for myself, and it's really hard to make a person see sometimes that message. Right.

Caring for themselves isn't just about them, caring for themselves makes them capable and able to care for their loved one long term, and it also allows them to enjoy time with the person that they're caring for. If someone is stressed and overwhelmed and burnt out and just trying to make it through the day with a person that they've given up a lot just to keep alive and they're not enjoying life with a person that they've given up a lot to keep alive, for me, that's one of the saddest things to hear because it's missing that Availability to just be in the present with someone, and that has to be lonely for the person that they care for. If you would have continued trying to force Elaine to live in the world that the two of you met in, she probably would have Your journal entries and diary, writing that you read later may have sounded different because she loved and enjoyed and, and saw the value in what you gave her because you let her be herself as she was changing.

And so caring for yourself as a caregiver so that you can. Allow the person to enjoy time with you and to be with them long term is a gift that you're giving them and it's a necessity for you. So I really appreciate you talking about that in your book because, I know that self care is hard for women, but I feel like it's equally hard for men to, take the time to do it for themselves.

Martin Schreiber: Irrational irritability. And, uh, I want you to know that I have purchased more. Boxes of candies and, and even scent flowers too because of becoming irrationally irritable. Now, how do you become irrationally irritable? You don't get enough sleep. Yeah. Or you feel guilty because no matter what you do, your loved one still is not getting better.

 You know, it can't be fixed as you said. And so that irrational irritability comes into play because you feel so pressured and tense. If I really love my wife, What good does it do her if I'm irrationally irritable around her or everybody I come in contact with? And so, there's the other aspect too, uh, and, and you touched on it, which, which I call moments of joy.

And so, when Elaine was diagnosed, the doctor says there's four things. There's Lumenda and Aricept. Whether those two drugs work or did anything, I don't know, but that was... The best thing we could do at the moment socialization being so very, very, uh, important for for both parties. But then also walking, which is the best exercise for the brain and then also a class of red wine every evening.

Well, Elaine got four weeks ahead with the glass of red wine and the walking, but here's the thing you talk about her world and my world in the beginning. We, I want to religiously went for a walk in my mind, a half an hour walk. So, so we would be walking and they said, Oh, look at that beautiful bird. Come on.

And then we have to get going or look at that flower and then come on. I'm so upset with myself and that's another thing we learned. We have to learn to do. We caregivers and as the big forgive ourselves for things we didn't know. I was so upset with myself because those were specific. Wonderful moments of joy to spend with.

So That irrational irritability, and again, what we've got to know is that we, for our loved one, we've got to take care of ourselves. But also, here's another point, Charlotte.

So, I have 13 grandchildren, and four children, and with their spouses and so forth. They also have, they want a grandmother and a grandfather, they want a mom and a dad. and we had an intervention, my children came to me and said, sat me down and said, dad, if you don't take care of yourself, you're going to be dead before mom.

And then, you know, what's going to happen, we're going to have lost both parents. And so you've got to take care of yourself for us and for our children. And, that didn't dawn on me until that time. And so I am now able to be, a better father and a better grandfather and a better friend and maybe even a better person.

Charlotte Bayala: Yeah. You give a lot of advice in your book for caregivers, which I, it's almost sometimes it's a forewarning. If you don't take care of yourself, this is what can happen. So, I really appreciate you putting that out there because I think that, especially with, people who have, People in their lives that have Alzheimer's, you do a lot in each chapter to give a little snippet, a little fact about Alzheimer's.

So you're working to educate people a little bit more and you give, recommendations on where people can go to, get help online or to find more information and you share Elaine's, um, her, like, Parts of her by sharing parts of the things that she's written, and you share so much about yourself, but it made me wonder because I really love your story and I really connect to it there were some parts that had me a little choked up.

But why write it? You had been through so much personally and as a caregiver, Was there one specific reason to share your story and all this information, or were there multiple different reasons why? 

Martin Schreiber: First of all, I began to realize, as I said before, if there's one thing worse than Alzheimer's, it's ignorance of the disease.

And what I saw, and this is personal friends, relatives, not everyone, but. a couple times where they would argue with their loved one. You can't put on another jacket you just put on a jacket and no you can't do this or no you can't do that and not using redirection or not using therapeutic fibbing and I saw the increased tension.

Between the person who was ill and the caregiver, I saw the frustration and because I experienced it and I'm thinking if it is possible for me to help others live their best life possible. If I could do that. That would be something that would be so special in my life because again, it's that this despair, the this hurt, the pain, all of the things we talked about, all of those emotions, all of those things coming.

So, so true. And I said, if I could, okay, I said, being a caregiver is like going up a mountain, you start off fresh and the air gets thinner and the more challenging. And so what I wanted to do is to say, look at, caregiver, you're going to be going up on this journey before you go.

Please sit down and visit with me just a little bit. You don't have to do anything that I say, but at least let me share with you just a little bit to help you make that journey a little bit easier. That's for me, I guess, in summation, why I wanted to write the book. I see the pain, I see the hurt, I see all of that, and I say, if I could help make it easier, that's what I would want to do.

So that's... Therefore, my two Elaine's and so it's been quite a journey. 

Charlotte Bayala: Well, if someone's listening to you right now. And they just found out that their parent was diagnosed with Alzheimer's. What would be the first thing you'd really like to tell them? What would you want them to know from the very start?

That you didn't have the opportunity of knowing. 

Martin Schreiber: fIrst of all, to have them understand if there's one thing worse than Alzheimer's, it's ignorance of the disease. You know, basically understand, what this disease is and how it can progress. Uh, then, uh, with along that, uh, please understand the importance of joining the world of the person who now is.

And, uh, you can do that by the therapeutic fibbing, you can do that by redirection and so forth. But, uh, and also I think To understand the various emotions that you're going to be going through to understand that it's an act of courage and not giving up to ask for help. Oh, my gosh, there's just so much that comes into play here.

. I had no concept about what was there in, in the future. Thank you. And I think for people to get a sense of that by reading my book, it can help them, you know, we're going up this mountain, you know, be careful. There's a slippery rock over there. Be careful because you can grab on and hold tight over here and all those different kinds of things that might be helpful and, what might be helpful in their life.

Charlotte Bayala: Yeah, I, I love that your book is kind of the, the guide, the map, on how to get to the top of that mountain, by people learning what it was like for you to care for your wife with Alzheimer's, and you don't make it all. Rose colored glasses, like you, you talk about, well, look, I didn't know about this and, and then I had to figure things out almost on my own sometimes and I made mistakes and I didn't take care of myself.

But I think the important part of your story is that you were able to understand. What change needed to happen in order for the two of you to enjoy your life together, and I think that is one of the most important parts of the story that you give because not everyone, can say that they were able to come to that realization.

 Some people will write books about how it was beautiful and how they were able to live a long time together, but we all know there were the arguments and the, just the things that go wrong because there's, I don't think any way a person can be a caregiver without there being difficulty.

And so I really love that. You're like, look, here's, here are the things that didn't go right. Here's how I had to learn how to do this. But in the end, being able to show, look, this is what I had to do in order to enjoy my life with my wife. While she was trying to live with this disease that changed her.

And I think that message is an important one because it's not just a person that has Alzheimer's, it can be someone who's had cancer, it can be someone who has multiple different chronic diseases or disabilities, or they were in an accident and now have been changed, disease changes people. And so I find that.

You know, my experience is not with Alzheimer's, it's with cancer. And there were parts where I was just crying because I was like, yeah, that's true. Or, oh my goodness, I did the same thing. Or I feel that. Um, so I think that your book is really valuable for all caregivers, just for the fact that you're telling your story.

It's a love story. And it's about you trying to figure out how to live your life with your wife and love it. All the way to the end. So I really, I really appreciate you putting that out there. 

Martin Schreiber: Well, as, as you're, as I'm listening, I'm thinking, you know, trying to help our loved one, you know, have the best life.

So Elaine was in us, uh, roughly with me for 11 years, roughly 8 years for. Assisted living memory care and many times we would have, uh, have lunch in the cafeteria room over at assisted living. And so one day we're having lunch there and she's beginning to cry. 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 turkey husband. I didn't do that, but, but, but Charlotte, here's what that meant to me. It meant that it was not necessary for her to know my name in order for our hearts to touch. And I try and have, caregivers and their family understand yes, it's, it's painful.

If a loved one doesn't remember our name, there is no question about it, but please understand that. To know the name does not necessarily mean, that your hearts don't touch and the famous author says, I may not remember what you said, but I will always remember how you made me feel. And so you take that situation.

And so hearts can touch by holding a hand. Hearts can touch by singing a song. Hearts can touch by giving a hug, by giving a smile. Hearts can touch just, just by being with someone. And, and so many times people also ask, well, if you're with me, if Elaine didn't know anybody, what, why should I come and visit?

Well, because for hearts to touch, it's not necessarily she know your name, but it is something as an experience to, to give someone a hug, you know, to hold their hand to sing songs and, and, uh, that there are things that we can be doing, to help. Help people on this journey. And, uh, so I'm, uh, when I think about that, I think about you and I'm gratitude.

Charlotte Bayala: Thank you. Thank you. Thank you for, for putting this out there too. Do you have one last memory? One last story of you and Elaine that you'd like to share? 

Martin Schreiber: We hear something. So the name of my book is My Two Elains. And of course the first Elaine was the girl I met when I was a freshman in high school and then, uh, had You know, four children together and 13 grandchildren, and she was the hardest campaigner I ever had, and if I would lose, she would never let me feel defeated, and just my friend, my everything.

Well, then there was the second Elaine. But there were more than two Elaines. The second Elaine... Was someone who sort of knew that she was becoming ill, uh, with, with, with Alzheimer's, but we could still, communicate. And then there was the other Elaine who would get angry with me, uh, because she felt I was holding her captive much too much because of her Alzheimer's.

And then there was the other Elaine who couldn't tell me how much she needed me. And then there was the... Other Elaine, who then now couldn't remember, how to take care of herself. And then there was the other Elaine who was now confined to a wheelchair. And then there was the other Elaine who was now confined into bed.

And so I had a chance, if you look at this in a rose collared glasses. I had a chance to love many Elaine's. Yeah. I had a chance to give myself to many Elaine's, or at least try to make her life better. I think the fact that there were these number of these Elaine's that I could love and take care of, I, I think that in essence is something which is a very.

Special, a very special experience. Very 

Charlotte Bayala: special. And how special is it to have someone fall in love with you over and over again? 

Martin Schreiber: So that would be it. Yeah. I can imagine. So yeah. 

Charlotte Bayala: Awesome. Well, Marty, thank you so much for being on here with me. I really appreciate you sharing all of your advice. Um, I love your book.

I've told so many people about it already. So I'll make sure to put the information for that on the website, but thank you for being here today. 

Martin Schreiber: Thank you very much.

Thank you for listening to this episode. I honestly have to tell you that Marty’s book really touched me even though I have not lived the experience of being an Alzheimer’s caregiver. The link is included with the transcript on love your caregiving life dot com and is included in the newsletter this week. You can easily subscribe through the website.

Thanks for listening