593: Governor Martin Schreiber: Advocating for Alzheimer’s Caregivers

In this episode, 39th Governor of Wisconsin and Advocate for Alzheimer’s Caregivers, Martin Schreiber, talks about the importance of advocating for Alzheimer’s caregivers.

Today, Martin talks about his book, My Two Elaines, and his experience as an Alzheimer’s caregiver. What can the community do to support Alzheimer’s caregivers?

Hear about therapeutic fibbing, Elaine’s own journals, and get Martin’s advice to his younger self, all on today’s episode of The Healthy, Wealthy & Smart Podcast.

 

Key Takeaways

  • “If Alzheimer’s is bad, ignorance of the disease is worse.”
  • “You cannot do it alone.”
  • “Alzheimer’s is a tragic disease. We can’t cure it, but we certainly can learn to live better with it.”
  • “More than 6 million Americans live with Alzheimer’s or Dementia, and more than 11 million people are their unpaid caregivers.”
  • “If people can simply better understand this disease, at that point, they can be more helpful.”
  • “Live and understand, and grasp, and appreciate, and be thankful for the moment.”

 

More about Martin Schreiber

Martin J. Schreiber grew up in Milwaukee, Wisconsin. Inspired by his father’s example as a member of the Wisconsin State Assembly and the Milwaukee Common Council, Martin ran for public office even before he had completed law school. In 1962, he was elected as the youngest-ever member of the Wisconsin State Senate. He was elected lieutenant governor in 1970 and, in 1977, became the 39th governor of Wisconsin. He recently retired from his public affairs firm in Milwaukee and now is an advocate for Alzheimer’s caregivers.

In addition to caring for Elaine, Martin is passionately committed to speaking out to help caregivers and their loved ones live their best lives possible. He and his wife, Elaine, have four children, 13 grandchildren and seven great-grandchildren.

 

My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver

The Alzheimer’s Association.

24/7 Helpline: 800-272-3900

Suggested Keywords

Healthy, Wealthy, Smart, Alzheimer’s Disease, Dementia, Caregivers, Awareness, Grief, Advocacy, Ignorance, Support, Mental Health,

 

To learn more, follow Martin at:

Website:          https://mytwoelaines.com

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

 

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Read the Full Transcript Here: 

00:03

Hi, Governor Schreiber, thank you so much for coming on the podcast and taking the time out today to come on and talk about Alzheimer's disease, which we are in the month of June. It is Alzheimer's Awareness Month. So I thank you for coming on and sharing your story and experience.

 

00:22

Well, thanks, Karen, I want you to know that I'm very grateful for the opportunity to be with you. Because there's so much important information that people should be aware of relative to Alzheimer's disease, both for the person who was ill, and also for the caregiver.

 

00:41

Yeah, absolutely. And now many people listening to this podcast may know you for your service to the people of Wisconsin in the state senate, then you were lieutenant governor, and ultimately, the 39th, governor of Wisconsin. So like I said, Today, you're here to talk about Alzheimer's. So can you tell us a little bit more about the work you're doing as an advocate for Alzheimer's caregivers, and kind of how and why this is personal for you, and how you found yourself here?

 

01:11

Well, very soon. It I tell you, if if I go, my wife humane is now in our 18th year since diagnosis. And if we you and I go back 18 years, at that time, this disease could not be cured, delayed or prevented. 18 years have gone by and this disease still cannot be cured, delayed or prevented. So what happened was, because I didn't understand this disease, I made my life more miserable. For my dear wife, who was losing her memory, I made my life more difficult for myself, as well as for many other people, because I didn't understand this disease. And so I conclude now, that if Alzheimer's is bad, ignorance of the diseases worse, and when I say ignorance of the disease, I don't mean ignorance of the disease just simply by lay people, but I'm talking even the medical profession, I'm talking even caregivers themselves. I'm talking about churches and congregations and temples and so on, there is just not an awareness of this disease, as it relates to how it should be dealt with. Because you can't fight it, you can't beat it. And so if we can learn a little bit more about it, we have a better chance of having our loved one with the disease, living their best life possible. But also we had the chance of having the caregiver also receive their best opportunity of living their best life possible.

 

02:51

Yeah. And you wrote about this in a new book that is published this month in June, called my two lanes. So you depict your wife your wife's battle was with Alzheimer's. And you know, like you said, This disease is progressive. And the person definitely transforms from probably the person you knew into, into maybe someone else. So can you talk about how you dealt with that as, as her husband and as the main caregiver?

 

03:22

Well, first I dealt with it very badly, X extremely poorly. And because of that, we missed out on many moments of joy. What I tried to do in the beginning, because I didn't understand this disease, what I tried to do was to keep her in my world, knowing Lena, it didn't happen on a Wednesday, it happened on a Thursday, it wasn't the Joneses, it was finally, I got the understanding that it is important for me to join the world of the person who now is. And one of the most difficult, difficult challenges that any caregiver has, but which has to happen is what I would call the pivot. And the pivot is when the caregiver gets to the point where you let go of this person who once was. So you can now embrace and help the person who now is because if we don't, first of all, because this disease is incurable at this time, you cannot fight it. There is nothing you can do. And I found out that all of the navies, saline, and all of the armies marching and all of the liquor that's that's distilled and all of the beer that's brewed is not going to stop this disease. And so rather than how do we fight this disease, the question is how can we fight to give our loved one their best life possible? And so within that framework, then there's A number of things that is important for for us to understand about this disease and for us to understand about the challenge of, of caregivers. So as I said, one of the things I learned was to join Elaine's world. Then another thing that I learned was the importance of what I call therapeutic fitting. And again, look here, let me let me just back up before we go into therapeutic fitting, if we can envision a funnel, and if we put the small part of our funnel by your eye, and of course, because the funnel expands, as you look up, you can see the blueness of the sky in the hope of tomorrow. But what happens is, as the disease takes its course that funnel becomes inverted. And now the large part will be by your eye, and you look out and all you see is a little bit that then becomes the world and the life of the person who now is they are not aware of what happened five minutes ago, five hours ago, maybe five years ago, nor are they concerned or aware of what can happen five minutes from now, five hours from now or five years. So it's it's a different world. Now. When I wrote this book, I felt really proud of myself, that I had finally put some of this into perspective. And lo and behold, before we're ready to go on for print, I find a series of notes and diaries that Elaine had been keeping since her diagnosis. Well, I want you to know that we had prayed together. And we had cried together. But Never did I understand the courage that it takes to be diagnosed with this illness, and then that can continue forward. So as Elaine is going through this transition, and now we're here we get to therapeutic phibian. As Elaine is going through this this transition this journey, she asked me once, how are my parents? Oh, I said, Elaine, your parents are both dead. The shock on her face when she realized maybe she didn't say goodbye. The shock on her face, maybe even not attend the funeral. I promised myself I would never put her through that again. So then when she asked me the next time, she said, How are my parents? Oh, I said Elaine, I said your mom is just really doing well. She likes working at church and volunteering. Your dad likes sports. He likes it that makes me feel so happy. Well, that's therapeutic fitting, therapeutic fibbing joining the world of the person who now is now I want you to know that I tried this therapeutic good in the first year of my marriage, but it didn't work so good then, but certainly at this moment in time. But then another experience to give me a sense of this all

 

08:12

the feet, when he lanes still was able to be mobile. We were having lunch at the assisted living memory care. And we're talking and then she starts to cry. I said, Elaine, why are you crying? Well, she said, I am beginning to love you more than your husband. Well, I didn't ask her what's wrong with your jerky husband. I didn't do that. But I tell you what I learned. I learned that it is not necessary for her to know my name in order for our hearts to touch. And so many times, as I talked with caregivers, they become initially so distraught about the fact that their loved one may be married for 5060 years, children so forth. That person with Alzheimer's does not remember their knees. I would tell them understand that your loved ones mine is broken. And sometimes there's no more of a chance to have our loved one remember our names and a person with a broken leg winning an Olympic championship, a gold medal. And so we we just simply have to understand the importance of joining the world of this person who now is one one of the challenges of caregiving, and there are a number of them. But one of the challenges of caregiving is that you work so hard to try and help your loved one but here let me let me just back up a little bit here. So we go back 18 years. The First Tee lane. That was the girl I met when I was a freshman in high school. School, I fell in love right away. We dated and we went steady and we got engaged, and we got married and four children, and 13 grandchildren, now seven great grandchildren. That was the first Delaine, I would run for public office, you will be the hardest working campaigner. If I would lose, she would never let me feel defeated. She was everything in the world. To me as it relates to any good thing that happened. The second lane began to appear. As I said, some 1819 years ago, when she would get lost driving to and from places she had been going to and from for the past 10 years, the second Elaine began to appear when as a great cook, she messed up her recipe so bad that she would cry, she would be so embarrassed. So that was the beginning of the second lane. So now we get this diagnosis. And I took a marriage route to death to as part I'm going to do all these things. And when Elaine was first diagnosed, she was given the mental mini test. And basically the mantium. The mental mini tests is a simple test asking for example, what day it is. When is your birthday? so forth? Very simple questions. And if you scored 30 or above you would be considered Okay, pretty normal. If you scored 30 or below, what the situation would be is that maybe at signs of early onset, well, Elaine's test score at that point was 28. They say that the average person loses four to five points going down almost every year. And it doesn't happen, you know, arithmetic Li from 20 820-726-2524, it may stay at 28 for a while, then maybe drop down to a 25 and then stay at that point, then maybe jump down to 21 and so forth. Well, what is important here is that you then test it out first at one year, you lose four to five points every year 18 years ago, it gives you a sense of where Elaine's life now is. But with that understanding with the understanding that the mentee meant a mental mini test

 

12:42

goes down. What what happens to the caregiver is you devote your time and your talent and your energy and your love to this person. And you just step out thank you have this answer. And then what happens is you wake up the next morning, and it's a new challenge. Well, what am I doing wrong? So what happens then is you devote more time and more talent and more energy. And you Okay, flow and all of a sudden, no. So what am I doing wrong? And so I have seen many instances where caregivers develop this so significant guilt, that they're not able to to help their loved one no matter how hard they work, what are they doing wrong? But here's the other aspect that comes along with it not only the self questioning about what am I doing wrong, but the caregiver is also going through a type of depression, and also what I would call an unacknowledged meeting. So I had a dear friend who retired and enjoying retirement, had dinner one night, laid down on the couch to watch the baseball game. Tragically, he died massive heart attack, just gone. Well, there was a funeral. And friends stopped by to express their sympathy to acknowledge the passing of this of this wonderful person. And there was closure. So what happens in the life of care giver is that there never is closure. You see your loved one dying a little bit every day. You begin to feel just so horrible about your guilt not being able to do anything but you're also getting to the point where you're saying, My my my loved one is is leaving me and then that that grieving, you know, just does it's not acknowledged and that's really one of the challenges that caregivers have to face. And that is to face up to the fact that yes, you are going to be grieving. And you should acknowledge the fact that you're going through this grieving at this moment in time, then there's also the depression that comes with it. And knowing what is the future and worrying about that also breeds anxiety. And so you take the guilt, you're not doing enough, you're not maybe getting enough sleep, you're not necessarily going for the walk, you're not getting any visit with friends, because you're focusing and focusing and focusing? Well, I try and have caregivers understand one of the most important facts about this disease, and that is you cannot do it alone. I do not believe, well, first of all, we men are sometimes really stupid. You know, we're not going to ask for directions, because we know it all, you know, I was going to take care of Elaine and so forth. And I let my ego, my own self centered. passion to do Z to defeat this disease, I let that take control over what was really best for Elaine. Because I did that we really missed out some, some great moments of joy. And

 

16:34

at the time of diagnosis, the doctor said there were four things that we should be doing one of the two drugs, drugs called the Menda and erysiphe. They do not stop the disease, they just simply delay the symptoms. So that was point number one, point number two socialization, you do show to socialization continuing, and then also getting exercise going for a walk, for example, and then also a glass of red wine every evening. Well, you then got three weeks ahead and the glass of red wine every evening and four weeks behind and in the walking. But here, here's the the situation about not joining the life and the world of this person who now is. So I knew we should go for a walk. So in my mind, half an hour walk is sufficient. So we started walking the lane with say, all look at that flower Kimani lane, you gotta get this throw, you know, our look at the bird, no, come on Elaine. And so my focus was not on the here. And the now my focus was getting this work done. So I could go about some other type of, of activity, whether it's trying to work with my business at the same time, and so forth. And the lesson here is Alzheimer's is a tragic disease. We can't cure it. But we certainly can learn to live better with it. And so had I known, then what I know now, I would have stopped with the lane. And we would, we would have admired that flower, watch the bird, we would have even maybe even just stood in the sunshine for a while and felt the warmth of the day. So the life of a caregiver is extremely challenging. We have to know that we can't do it alone. We have to understand that if we if you want to show real courage and real manliness that is shown by asking for help. So gosh, I think you asked a question a while back and I think that that was about maybe three days ago and I still?

 

19:03

Well, I think I think what you have done is your as you were speaking I said okay, I was gonna ask that I was I wanted to talk about that. But I think what you did you do is you really clearly laid out some real big challenges that caregivers have to face and some really great lessons that you've learned that you've passed along and I know that those lessons are some practical takeaways in the book in sections called kind of what you said what I wish I'd known or what I would have done differently. But it sounds to me like if you're a caregiver, you need to check your ego at the door. You need to be present with the person you need to join their world. And and it may perhaps be a more pleasant or at ties would be a happier existence for not only the caregiver, but for the person living with Alzheimer's as well. And, you know, as someone who like we'd spoken before went on the air Mike grandmother had Alzheimer's. And I can only assume my parents feel the same way that you're feeling now that we used to always Correct, correct, correct her, when in fact, we just should have said, Where's where's your grandfather? Oh, he'll be home in a little while, instead of saying no, he died 15 years ago. And then, like you said, it just can make the patient agitated and confused. And if you want to continue to have those happy times, it's best to be in their world. So I think you really outline that very, very well. And I do want to go back to something that you touched upon, but didn't go into great detail, and that is Elaine's journal. Now you, you put this into the book, some of her excerpts where she detailed her feelings and emotions as she was struggling with this diagnosis. So why was that important to include those? And were there anything in those journals that surprised you?

 

21:09

There were a number of things. First of all, I wanted to put Elaine's words into the book. I wanted to do that. So. So caregivers and their families would understand this. Great in internal turmoil, being diagnosed with it, but still knowing your mind, then having my your mind sort of slip as I said, you go from a 28 score, maybe down to a 26 score, but you still think you're sort of all right. But then some days, you're not all right. But with her journals. As I said, I learned the courage that it takes to be diagnosed with this disease and continue forward. But I also learned, we talked about the pivot, where the caregiver gets to the point of letting go of this person who wants was to join the world with a person who now is the person with Alzheimer's also has a pivot. And it's almost by the grace of God. And that pivot is when the person with Alzheimer's finally leaves the real world and enters their own world. And I've got, well, let me just read one or one or two of her of her excerpts, of course, in the book, but I wanted to make sure that the reader would understand that the challenge is that that a person has with Alzheimer's, but also how important I was in her life as her lifeline. And I really didn't know that. And I think that if a caregiver understands how important they are as a lifeline to their loved one, they will take better care of themselves. I was lacking sleep, I was lacking exercise. I wasn't eating well, I was like, My daughter, Christine, gave me an article on moderate drinking. And it wasn't because she thought I was drinking too little. That's for sure. So but anyway, so with her excerpts, I want to give you just just a few examples of, of what what she's going on. So she starts off at when she was sort of diagnosed, she wrote a letter to her to your loved ones. And she writes, it wasn't until a few weeks ago that I really had to say, Yes, I do have Alzheimer's, I read up signs that indicate Alzheimer's, like getting overly upset for no reason, and having trouble with names and directions. But I still didn't think it was a problem for me. But in hindsight, for too long, I've been getting lost driving, having trouble keeping days straight, and difficulties with names and schedules. Still, I still felt like I could handle it, it won't get worse. But this morning, I started reading about the mid stage of Alzheimer's, in hopes of preparing myself better and realize I'm not very far away, that is most scary, but I have to accept it. And so also in some of these pages, she talks about how important I was to her life. She said, Please take care of yourself, for me as well as for you. So then, you know and again she is in a process of, of of losing her memory. And she's in the process of getting to this pivot where she loses the reality of life and goes into her world. But to give you a sense of, of the tugging that's going on within in her she writes this, she writes, I am not enjoying my role anymore as Marty's wife because of his Hammond concerns about My Alzheimer's, he doesn't let me be me. He doesn't let me go for a walk if I want to, or the other store loans, I used to appreciate him what I thought was concerned, but he holds me captive much too much, I'm going to try to have a second opinion because I really don't think I have any problem. I know how to drive or walk anyplace I want to, but he doesn't believe me. And I hate the control he has placed on me, I don't even think I have Alzheimer's, per se. And so we see that, and again, my my, we see a human being going through that kind of turmoil. And we think we could have done a better job, or I think I know I could have done a better job. And because of that I wanted to write the book, so that I could help caregivers learn, cope, and survive. Just I want to just read one, one more here than

 

26:01

that. I don't have the exact date on this one here. But she writes, I wish my Alzheimer's would dissipate. I'd like to be the smart wife and mother I used to be. Now I have to waste so much time just trying to figure out what I should be doing. without seeming as smart as I used to be. I need to rely on Marty for everything. And I'm very lucky, he continues to keep me life gets more difficult every day. So it's it's a bummer of a disease. And again, we can't beat it, we can't fight it. It's not curable at this moment in time, it can be delayed can be prevented. And so what we want to do is fight was our best weapons possible and that is to better understand the disease and better understand the world to which our loved one is passing into. So we can help them on their journey as much as possible.

 

27:02

And you know, According to the Alzheimer's Association, more than 6 million Americans live with Alzheimer's or dementia. And more than 11 people are their unpaid caregivers. So how can people listening right now support those who are caring for Alzheimer's patients and support the patients as well.

 

27:23

One of the best things and most important things I think a friend or family member or neighbor can do for a caregiver. Number one, simply acknowledge what they're going through. And that acknowledgement in and of itself is so important. Because people really don't understand one. And because people don't understand Alzheimer's, they they shy away from it. Now. I call Alzheimer's, not a chicken casserole disease. So hypothetically, I get an operation of my, you know, maybe a higher operation. And so I come home, and I'm laid up people will bring me a chicken casserole, I've fallen I break a hip, I'm recovering, they'll bring me a chicken casserole. Alzheimer's, people don't bring chicken casserole, we a person, a caregiver and their spouse may have had friends that they did many things over a period of 3040 years together as the children would grow up. And let's just assume hypothetically, that it would be camping and canoeing. So for 3040 years, they, the families did this together and the children grew up and so forth. And that was the bind holding them. That was the binding thing for them. So what happens is now the spouse gets Alzheimer's. And because the friends don't know about the disease, they don't know how to handle it, and they withdraw as they withdraw. The caregiver not only is trying to deal with this depression, this anxiety, they are grieving the guilt. Now, the caregiver is also feeling abandoned, abandoned by friends at one of the most challenging times. So if you want to help any caregiver, or even work on creating a dementia friendly community, we have to understand this disease and have to understand how we can best deal with the disease. But then, rather than saying, call me if you need help, because we caregivers won't do that. What we will do however is respond by someone saying oh maybe I could pick up medicines from the drugstore. Maybe I could go shopping for you or maybe in other words specific kinds kinds of things, or maybe even taking the person who was ill for a walk so that the caregiver can get some, some respite. But as I said, if Alzheimer's is bad ignorance of the diseases worse and ignorance of the disease by the medical profession, caregivers, as well as family, friends and neighbors, and if people can just simply, hopefully better understand this disease, I think at that point, they can be more helpful in people living their best lives possible.

 

30:32

Yeah, and thank you for that advice. I think that's wonderful advice for people that are, you know, in the community and in this fear of people living with Alzheimer's. And I also want to mention that there is support online@alz.org, and that's provided to the Alzheimer's Association, or by phone at 800-272-3900. So if people are looking for more resources, they can find them there as well. And of course, your book. Let's talk about that. My two Elaine's, learning, coping and surviving as an Alzheimer's caregiver release is June 13. So we're perfectly within that Alzheimer's Awareness Month and people can get the book, I'm assuming wherever books are sold. That's my understanding. I would assume that wherever books are sold, it's printed through Harper horizon, which is an imprint within HarperCollins. And one last question regarding the book. And this is a more personal question for you. Is it upon writing the book? Did it give you time to reflect? And did it feel cathartic for you? Did it give you any sense of closure around your living with a person living with the disease?

 

31:51

It certainly was cathartic with without a question. But I think that one, one of the main things I got from this book is much I wanted to do something to help other people not both through what I as ignorant caregiver went through, and also what I might be able to do to help caregivers help their loved one with with dementia live their best lives possible. And the because I think back again, on our past 18 years, and I think how it could have been easier, as difficult as it was, it could have been easier. And it's not a matter of getting enough money to fly to the moon and back. It's it's a matter of just simply understand some some some basic factors and, and dealing with some unknown quantities, but no, it was it was quite an experience to write that book. And I'm glad that we were able to do it. And I want to tell you that I'm grateful for for being able to talk about this. And and also grateful that I think, hopefully we're going to be able to help some more caregivers learn cope and survive.

 

33:16

Perfect. And where can people find you? Let's say they have questions they want to talk to you they want to get in touch with with you, what is the best way to do that?

 

33:26

We have a website. That's right, my two Elaine's all one word.com And guys should anything and I have been up until COVID giving talks around the country learning and really everything that I shared with you about what caregivers go through, I can tell you, whether it's it's Newmark, Minnesota, Florida. St. Louis, I don't care where it is, that is simply an overlay of almost every single caregiver as how they're trying to cope with this disease. So but I also wanted to mention you gave the 800 number for the Alzheimer's Association. That's a 24/7 number. And so there are going to be some moments where you're just not going to be able to figure out how am I going to cope with this? Well, if you give them a number, I mean, give them a call, they will be able to help either give you an answer or point you in the right direction.

 

34:32

Perfect. And before we wrap things up. I have one last question. It's a question I asked everyone who comes on the show. And that is knowing where you are now in your life and given your illustrious career. What advice would you give to your younger self, and that may be that younger self was that freshman in high school when you met your wife or maybe it was in the midst of your being the governor? What advice knowing where you are in Now would you give to yourself as a younger man?

 

35:05

Live in the moment. And we, you know, it's not only the fact that I didn't enjoy looking at the bird with the lane, it's probably the fact that I was too busy to take time to enjoy playing ball with my sons are too busy to take time to go to the museum with my daughters, and, you know, just, you know, being with them. But really my mind is someplace else worried about some other kind of thing over which I probably had no control over anyway. But I think to, to, to live in and understand and grasp and appreciate, and be thankful for the moment.

 

35:52

I think that was wonderful advice. Well, Marty, thank you so much for coming on the podcast and sharing, sharing this book with us. And so everyone, again, the book is called my two lanes, it is sold everywhere where books are sold. So I highly encourage you, especially and I'm gonna say this, especially for people in the health care profession. I'm a physical therapist, a lot of physical therapists listening to this, I think, especially for those people, because oftentimes we're with the patient, but we're not with the caregiver. And I think it's really important to get a full view of what the what life is like for everyone surrounding this patient. So I highly encourage you to go out and get this book and read this book. So Marty, thank you so much for coming on.

 

36:42

There. And I'm very grateful. One one thing, as as we, as we sort of parted company here, when I talk about joining the world of this person who now is to make sure that caregivers as well as healthcare professionals know and understand truly that you cannot argue with this disease. If when I took Elaine to daycare, and we would drive up to the door, and she said that she's not going in, there was no way that I would be able to with wild horses drag her out of that car so she could go into, you know, the daycare. And so it's a matter of redirection. So we would drive around a little bit. Some of the neighborhoods come back, here we are, and she would do that. Sometimes we would be at dinner, and she would reach across the table and grab someone else's wineglass. That's not yours. Put it down. No, it's Elaine. Thanks for finding that wineglass. If you wouldn't have grabbed it, it would have fallen off. And now we're able to give you Lena good feeling about being helpful, but at the same time, not creating an awkward situation. No, you can have that scarf. It's not yours. Well, thanks for finding the scarf, and so on. So, anyway, carry on. I'm grateful to you for what you do. I know that you help out people and that's really special and an honor for me to be with you. Thank you.

 

38:10

Well, thank you and everyone. Thanks so much for listening, have a great couple of days and stay healthy, wealthy and smart