When "I Do" Means Caring Through Illness: A Story of Devotion

Marty Schreiber has dedicated his life to advocating for Alzheimer's patients and their caregivers. As the former governor of Wisconsin and author of the acclaimed memoir "My Two Elaine's", Marty draws from his own deeply personal experience as a caregiver for his wife of 61 years, Elaine. For eight years, Marty cared for Elaine in their home as her Alzheimer's progressed, but he now admits he was unprepared for the physical and emotional toll it would take. Marty candidly shares his struggles, from trying to keep Elaine in his world to nearly working himself to exhaustion. He also opens up about difficult decisions like placing Elaine in assisted living and the guilt he still feels over not supporting his children through the process. However, Marty channels his regrets into wisdom, urging caregivers to accept help, join their loved one's reality, and focus on living fully themselves to best support their person. 

Through humor, heartache, and hard-won insight, he offers invaluable insights aimed at aiding fellow caregivers to embrace support, understand the dual realities of their loved ones, and nurture their own well-being for more effective care.

About Marty:

Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer’s caregivers and persons with dementia. Reaching audiences nationwide at live events and through various forms of media, Marty uses humor and compassion as he shares lessons from his ongoing, decade-plus journey as a caregiver. 

His speaking tour takes him to conferences, civic organizations, senior communities, libraries, and more around the country. He has given more than 300 presentations since launching his awareness campaign in late 2016. Whether in Texas, Idaho, New York, Missouri, Florida, Ohio, or closer to home, caregivers tell Marty that his message encourages them and hope that they can manage their challenging situation.

Marty’s book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, is winning acclaim from caregivers across the country. It 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” of both 2017 and 2018. 

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate the inspired lead with helpful tips and resources and of course, laughs Now, let's get to today's confession. Good morning, Jay.

JJ: 0:30

Good morning, Natalie.

Natalie: 0:32

How are you doing?

JJ: 0:33

I am fantastic this morning.

Natalie: 0:35

Is there any reason you're fantastic. Well, we

JJ: 0:38

have a very esteemed guest today and we got him out of bed a little bit early.

Natalie: 0:43

He is out of bed early. Yes. i I have no doubt that Marty is going to have one of the best confessions we've heard. Because his confession is it feels a little bit like a love story. I know what I mean. And so I cannot wait to hear all about it. So I think he should tell our guest about our well our listeners about our esteemed

JJ: 1:08

guest. I will I will absolutely do it. So we are very honored to have with us former Wisconsin Governor Martin J scriber, who has allowed us to call him Marty and we appreciate that we love that he is an award winning crusader for Alzheimer's caregivers and persons with dementia. He has combined decades of public service and business acumen to advocate on behalf of older citizens. He is the author of my two Elaine's, learning, coping and surviving as an Alzheimer's caregiver, which is recognized as one of the best Alzheimer's books of all time. Martin has been a caregiver. After 45 years of marriage to his high school sweetheart, Elaine, he says he was completely unprepared for the toughest role of his life, being a primary caregiver, lessons learned and regrets. He has them and he is here today as part of his ongoing work to help other caregivers facing similar challenges. avoid some of the mistakes he made. We are so happy to have you here with us today, Marty.

Marty: 2:15

Well, thank you very much. I yeah, I really feel quite honored to be with the two of you for what the two of you have been doing to, to help caregivers to to help people understand this whole matter of the great challenges of caregiving as as well as being given a relative of a person who is ill who, who needs help, and it's great to be with you. And I didn't know if you say it was good to have the the extinguished. Martin Schreiber, or this thing was Martin. D, did you not I,

JJ: 2:51

you know, it's the it is the Southern accent.

Natalie: 2:54

It's my accent, Marty.

Unknown: 2:56

It's

Natalie: 3:01

your western Wisconsin, so you might have to correct me on being like Natalie, you need to enunciate your your words a touch better.

Unknown: 3:10

I think I'm the only one on this. Get together without an accent.

JJ: 3:17

You know, we're gonna let the we're gonna let the listeners

Natalie: 3:22

All right. Morning, tell us let's start. I always joke, dude. I like to laugh because I love to say, start from the beginning. So you were born, and then skip fast forward. But I don't want to fast forward to your caregiving journey. I want to fast forward to you know your story. Because you and Elaine, your wife, were highschool sweethearts. And you were married. As JJ said, JJ, let that out of the bag. Marty. I didn't do it. 45 years before a diagnosis, but you and and you sort of did some things before during those 45 years. So tell us a little bit about you and Elaine and a little bit of backstory there.

Unknown: 4:03

Well, thank you. We met in a freshman in high school in Latin class. And her last name was theny my last name Schreiber. And so we sat next to one another. And gosh, I saw her and I just concluded this is the person for me. And I concluded that there could not be anyone find her as and I don't think I said the word life partner. I think I said something. Wow. I think she's really neat. And I think I want to marry her. And so we we dated and we we went steady and then we got engaged and then we got married and four children 13 grandchildren and now eight great grandchildren. And she was always my friend and my advisor and if I would run for political office even as a as a freshman in high school, while politics was always what I was about, but the campaign poster for that hadn't. And then when it came time for the governor's race, she was so involved in that she danced with President Carter at the White House. And there was nothing in my life that I would want to do that she wouldn't support me with. I wanted to get into sailing, we had hardly any money. And so she went at that time army surplus store, got some parachutes and made a sale. And when I was campaigning in 1966, she was expecting a child, a baby, or daughter, Christine. And I was out on the campaign trail, and she had to walk over to the hospital herself, which was in a half a block, because I was 120 miles away. So that's just an indication of the kind of wonderful life partner I had, whether it was hosting dinners for important people, or, you know, being the parents of kids was a husband is often around trying to save the world. And it's so just just so special. So then we've got a great life. And then she begins to get lost, going to and from places she had been going to and from for the last 10 years, she was a great cook. And she would begin to mess up her recipe so badly, she would cry. And then, Elaine, if it didn't happen on a Thursday, it was on a Friday. And don't you remember it was the Smiths and not the Joneses. And Elaine, you just asked me that question over again for the fifth time I thought and so forth. And so that, in turn, then was the beginning. And the title of my book is my two Elaine's firstly, then of course, this wonderful woman who I met, wonderful girl I met when I was 14 years of age, and raised the family and he had a wonderful life with them. The secondary Lane was this, this woman who, who now had Alzheimer's, and what I began to understand is, I better understand that there is a secondary lane. Because as Elaine's, Alzheimer's would advance. I so much wanted her to stay in my world. And that's why I had a corrector all the time. And why did you put the car keys in the dishwasher? And, you know, why do you always ask those same questions and so forth. And I was so ignorant of this disease, and then I conclude it if there's one thing worse than Alzheimer's, it's ignorance of the disease, and ignorance of the disease by me the caregiver, but also ignorance of the disease, by the medical professional who doesn't understand when there is a diagnosis of dementia of Alzheimer's, there are two patients, there's a person who was ill, and then also the caregiver. There are far too many caregivers who die before their loved one dies. And they die because of the tension of the anxiety of the worry of release of cortisol in the body, which caused all kinds of things to be happening. And so I'm learning some of this much too late. And in on top of that, not only did I see what I was doing to Elaine, by agreeing with her when something happened or didn't happen or what they're not with. But I also saw Renzo who, who had a spouse with dementia. And I saw how he would argue with her, you know, I just gave you a blanket two minutes ago, and I would think if, and, and I saw that, and I saw the look on the person's face, and I began to understand, I was doing the same thing to Elaine. And not understanding and again, what I said one of my greatest mistakes, was trying to keep her in my world. And once I finally began to understand the importance of joining her world, at that point, then we were able to at least extract some moments of joy and some, some goodness from this terrible disease. And that goodness was from the standpoint of enjoying watching leaves roll across the lawn, watching the snowflakes, holding a hand or singing a song and, and realizing she she didn't know she asked me all those questions in a row and she didn't know because that was the second event.

Natalie: 9:52

Hmm, I feel like I'm gonna have to get

JJ: 9:53

the tissues out. So I did because I right there like right off the bat, and I know you've been to doing this for so many years but those words that you said you wanted to keep her in your world like I feel like I fought with that every day Marty with my mom. And those words, I say to her, but that I've never thought about it is that I want to keep her in my world. I get frustrated when she takes her walker with her instead of her wheelchair because we're going out somewhere and I say something harsh to her. But it's because I don't want her to have a walker. I don't want her to have Parkinson's. And that is probably the the most honest thing I've it's a statement that rings true to me because I want her to still be in my world. But if Elaine was diagnosed with Alzheimer's, she was I think as I get older,

Natalie: 10:45

I'm old that 63

JJ: 10:47

That's, that's pretty young. I mean, where were you guys in your life? Because you had worked and you had been a public servant. All those years. Were you planning on? You're going obviously you're ready to go sailing around the world. I love that.

Unknown: 11:00

She also said to that's great. What are you planning on and change the direction of your life? Sure, as I said, 13 grandchildren, and, and now eight grandchildren, but not as many great grandchildren, but certainly 13 grandchildren and all over the country, our children. Kathy lives on the East Coast, Christina on the West Coast, my son in central Wisconsin, my other son here. So we had plenty to do just to enjoy the life for the grandchildren, and a life of our own children and going together and it was just so, so wonderful and so, so marvelous to think about doing those things. And then all of a sudden the doctor says, you know, because he believes it's Alzheimer's and, and from there on then, as a side note, when he Layne was diagnosed, I said if there's one thing worse than Alzheimer's, it's ignorance of the disease. So when the doctor gave the diagnosis, he said, there's four things we should do. One is new Manda and era set whether they work or not, I don't know. But that's what he recommended. The second thing is make sure there's continued socialization. The third thing he said, walking, which is the best exercise for the brain. And the fourth thing he said, was a glass of red wine every evening. Well, you ain't got four weeks ahead with a glass of red wine every evening. And she got three weeks behind in the walking. But that was this, that was what the doctor told me. And he were then able to work with the Alzheimer's Association. So that when now there is a diagnosis of this disease, that the doctor would give the caregiver a permit authorization for someone to give that caregiver a call, so that there can just simply be a better understanding of helping this, this this caregiver, at least in the initial stages, because it we know, you know, how difficult that whole journey is. And if we're ill equipped, we just add on tons and tons of worry and anxiety and Arctic that that didn't have to be there.

Natalie: 13:19

You know, Marty, I think that's so true. And I don't I think that and I've worked in the mental health field for 25 years and working with clients. And yes, we work with their families as mostly children. So you'd work with their parents and things like that, but their caregivers and how caregivers can have an impact on their how well they do. And our system, our health care system isn't built to do that. However, with recent legislative allowances on the federal level, it's allowing for certain caregiver training to certain populations. And I think about you know, you just said that's what triggered my mind you said, the doctor wanted to basically right in order to allow for you to get all the questions answered, as a caregiver so that you don't add to frustration, you know what I mean by the individual, we don't want to caregivers don't want to frustrate the person that they're caring for more because they're technically going through it. But you know, as I say to my husband, I'm going right with it right beside you, even though it's not happening to me, cancer didn't happen to me, but I am impacted by the events, the side effects, all that stuff. It happens I'm doing it with you. And I think that without that continuing education around to the caregiver to say you're gonna feel this, you're gonna feel this you're gonna feel this like acknowledge what you're feeling so that you can manage it. So it's exactly what you said about cortisol and how it floods the body and stress. So it just wants to just kind of like highfive you on that one?

Unknown: 15:00

Thank you. And let's go a little bit further with with high fiving. One another one, one of the things that I think we caregivers don't understand. I had a friend who retired. And what happened was he, everything is going good. He eats dinner one night, he gets a massive heart attack and he dies. And it was tragic. It was so sudden, well, there was a funeral, there was visitation, people came by to express their sympathy, they gave condolences, and there was closure. Caregivers don't get closure. And what happens is we in essence, see our loved one memory die a little bit every day. And we don't realize that we're in the process of saying goodbye. What I think we don't realize is that we are in the process of grieving. Yeah, when you talk about the Well, in my judgment, because caregiving is so difficult, if we can understand some of these emotions that go along with it, like you just affirm, but to also understand there's this whole method of grieving, that all of a sudden is coming to, to the forefront. And we feel this horrible loss. But we don't know why. And so that's why I contend that caregivers have to understand that as much as we think we're working calm and can do everything super man, super person, we have to have help, and making sure that we can get that assistance in and just sort of isolating these different emotions, trying to understand them. And then in respect, trying to do something to counsel our way out or in a better situation.

JJ: 16:56

And I know it's it's wisdom, and you haven't experienced, you know, you have I listened to the pace that you had your knowledge is like you just didn't just words, you just you bless me like, right, just everything that you said about about how you've gotten that piece. But how did you get through it, Marty? Because I know you took care of Elena at home for eight years, you've come to these places where you picked up about guilt and your craving during this process. But how did you learn these lessons? Like where was your strength? How did you get through these that time? Well,

Unknown: 17:35

that tell you the truth, I sometimes ask myself the very same question. And I don't know how I did it. Though, when I think back on the different worries, and the fears and the emotions and frustrations and the discouragement and all of those things. That is what spurs me on to tell you to what a wonderful service you are providing, because basically helping people on this journey. And because I didn't know, and I tell you, let's assume hypothetically, let's assume, hypothetically, that I win the billion dollar lottery. And I decide that the three of us and our families are going to be going on a Caribbean cruise. And so what happens is we're having a great time. We're just great time. And let's assume you fall overboard. And what I do then is I grab a lifeline and I throw it to you and it breaks and you drown? Well, I'm gonna tell you, when I think about that, I think about the fact that oh, by the way, when when Elaine was diagnosed, she kept a series of notes and journals that she wrote right from the beginning. So that's since since her diagnosis, and so she wrote as much as she could write over the course of time until she entered her world completely. And so she, she wrote these notes, and each chapter of my book begins with some of Elaine's words. So we know exactly what was going on in her mind and the challenges. And so one thing we had prayed together and we had cried together, but never did I understand the courage that it takes to be diagnosed with this disease. But Never did I understand how critical I was in her life and having things go as good as possible. Okay, now with that understanding of how important I was in in her life. So I'm her lifeline. And she writes about me being her lifeline. Well, here's what we caregivers do. We know at that lifeline a little bit, get enough sleep. We don't get enough socialization, we don't eat right. We don't get enough exercise. And because of all of those factors leading on it's like we're knowing that that lifeline just a little bit every day nine And finally it becomes useless because we're not taking care of ourselves. So when it comes time to give our loved one a lifeline, it breaks. And now we are absolutely of no use whatsoever. So how did I cope? How did I get through this all some good friends support, and not very much, because I'll talk about that in a second. But I don't know how I did it. I just happen to have some friends who were there, the Alzheimer's Association, I went to counseling, and I want to reaffirm for all caregivers that we need help to Alzheimer's support groups, and so on. And I tested out Beefeaters gin, beginning at four o'clock in the afternoon, and there's not enough Pete Peterson to take care of this disease. And sooner we recognize that the better off we are. Finally, I was going through the counseling, and then my children actually had an intervention with me. And they said that if you don't take care of yourself, we're going to lose both parents, and we don't want that. And so at that point, then we pretty well understood that I had to be changing my, my, my daughter, Christine gave me an article on the benefits of moderate drinking. And it wasn't because I was drinking too little. You know, she was really concerned. And so it was a tough call. But here, here's the thing, another factor that makes caregiving such a challenge. And that is, it is not what I call a chicken casserole disease. Hypothetically speaking, I break my leg, I'm tied up in my home, people will bring me a chicken casserole, I have open heart surgery, I'm recovering, they'll bring me a chicken casserole. Now my wife has Alzheimer's, or what do my friends do, and friends of 3040 years, who don't want to be mean, and they don't want to abandon you, but because they don't know about this disease, they stay away. And they don't know what to say they don't know what to do. And so now, the caregiver feels deserted by friends for 3040 years, and our neighbors and so forth, they stand offish, and so forth. And so, again, I salute you for what you're doing to try and bring greater awareness of this disease, and try and create a more friendly than dementia friendly atmosphere.

Natalie: 22:32

I know Jay and I are like chomping at the bit to get to talk to you, Marty. Like I'm like, Oh, I have a question. You know, it's it's interesting that you say that your friends have, you know, 3040 years. They didn't know what to say it's uncomfortable. It's and I think a lot of it, Marty comes back to this could happen to me. What if this happens to me, I don't even want to see it. There's, I think there's so many reasons that people pull back. My husband lost some of his friends that he had known since kindergarten, who had been in his life and Jason's 56. These people backed away. And I, it was so hard for me to understand that. But to watch him experienced that, as a cancer patient, not only are you going through this terrible illness, but to feel that you're that your loved ones. And so the only thing you know what I would say, Gosh, man, I'm tearful the day because I am loving you and Elaine, I just look at the people who are in your life lean in, as I think we as caregivers have to say give them permission to lean in to us. And for us and to understand that when you ask me, what do you need? I typically don't know. I just don't know what I need. So anything you do, potentially, is going to that leaning in the act of leaning in, is going to help one

Unknown: 24:03

thing that sort of amazed me. I would get together with the group with play cards, and never asked him how Elaine was No, I mean, no one of you know and so again, I'm not going to be a guilt trip on them at all, I'm just going to say that this disease is is something that we just have to have, hopefully more people understand. It's it's symptoms and, and so forth. And I think if that's possible, it can make the life of it but you're right about leaning in. And and I guess one of the most important things people did for me the was simply acknowledge it I understand that it's you know, it's gotta be, wow, someone knows, you know, and sometimes it's, it's something that is very comforting to Good to have someone acknowledged that.

Natalie: 25:03

Hey ladies, I need to interrupt for just a second to share about the sisterhood membership. It's basically a sale every day. And the best part, it's free. Here's the details. We're partnering with our friends at benefit hub and other care partners to save you money. With over 200,000 participating companies across the US and abroad. You'll find discounts at your favorite local stores, huge savings on vacations, amazing deals on home auto and supplemental insurances, and everything in between. Go to Confessions of a reluctant caregiver.com to sign up. And then definitely tell your friends about it. They can join to trust me, there's a discount for everyone. And don't forget, it's free. Okay, back to confessing

Unknown: 25:56

one of the things i i started wanted to mention also as far as when when I visit with caregivers, and that is that while Elaine and I were having lunch, she went into assisted living. And so we would have lunch together in the cafeteria. And so now we're, we're sitting there and eating and she's starting to cry. I said, Elaine, why are you crying? While she said 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 at all. Okay, but here's what that meant to me. What that meant to me, it was not necessary for her to know my name, in order for our hearts to touch. I try and have caregivers understand that because it's easy to become so distraught when your loved one doesn't remember the name, when don't remember the names of the children or grandchildren and so forth. And then we get it was this is stolen? So you remember songs? So no, no, that's not the answer. That answer is for the souls to touch. And how can souls touch by a smile by holding a hand by singing a song by giving a hug by just being there and listening to music. And so Oh, gosh, when when I give my talks and people will come up and share with me their experiences. I go back to reliving some of this. And I'm saying, Well, gosh, if I can help you, you know, it's like, I took this up this mountain journey, this, this, this, this, this path uphill, downhill through the woods, and so forth. And so now I'm back, I'm sitting on a log and someone is going on the same trail, and I said, Wait a minute, before you go, would you just please sit here with me for a few minutes? And let me let me tell you what I learned. If you want to do anything about it fine. If not okay, but but at least Please sit here so your life can be just a little bit easier on hold.

Natalie: 28:05

Well, Wow, I love that. Go ahead, Jake. I'm just sorry. I'm just over here.

JJ: 28:09

So one of the hardest steps for me was recognizing how far my mom had progressed. And when it was time for me to put her in assisted living. That was a hard step for me. Can you tell me about that with you in a light?

Unknown: 28:23

Wow, I'll tell you in here is one of the mistakes that we caregivers make. We think that we can battle this disease head on. And we men particularly who don't like ask for directions think that we're not going to let this disease take us down. So my health is failing. Elaine is becoming more of a challenge to to help out at home. And I know that I've got to be doing something. So I go to counseling one day and I think what she said what's wrong and I said well, I just cannot see putting Elaine into a nursing home. And the key I just can't see putting her there. And the counselor says you are not putting him in any place. You're giving her an opportunity to be who she is now. And so the counselors that can mighty Schreiber's 24/7 nursing home care take care of her absolutely not sticking by the door at night for fear she might go out I wasn't getting decent sleep. As I said before the lifeline was becoming frayed. And so I knew that for sure that I was not a very good caregiver for her before we went into assisted living. Now with that being said, here it is another thing that I I realized I was not wanting to put a lane into a nursing home because of me. I was the one who was gonna take care of her till death do us part. And what I was doing was making Elaine's life more miserable because of my braggadocio. You know A false assumption that I had to be the one who was in charge, well, you can't beat this disease head on. And we've got to, to win whatever we can, by making the determination to help our loved one, a loved one live their best night possible. And how do we do that? Well, joining their world, but also it is going to be necessary for them to live their best life possible, by us realizing that we are no longer capable of giving our loved one their best life possible by staying in our home. But it was one of the toughest decisions of my life. And I hated it. I can remember I, it was, the day after Labor Day she she went to daycare at the very same place that over the assisted living facility was out. And, and so this comes under the so so it's on the morning, the day after Labor Day and, and I take her instead of taking her to her daycare at the facility while we went down the hall. And we walked into assisted living. While the staff had been great. We talked about it a week before I was able through the weekend to get some of her some pictures there that would be familiar and a piece of furniture, jus, and so forth. I was taking my wife, you know, to. So as we're leaving our condo, I'm ahead of her and she leaves the door open. And I didn't have the heart to ask her to close the door. Because I knew that that closing the door was really the end of this life together. And I hated it. I just absolutely hated it. Now, I think also when I took our daughter or our our firstborn to kindergarten class, when she was four years old, she was crying, the daughter was crying, I the wife was crying, I was very sad, you know, and so forth. But the fact of the matter is, you cannot not have your four year old daughter go to kindergarten class. And also you cannot not have your loved one live their best life possible. And so what happened was once I got used to Elaine being in assisted living, I was a better father. And I was a better caregiver. And I was a better Grandfather, I was a better neighbor. I'm going to tell you something, I got into the areas of irrational irritability, you know, where the world is just coming crashing down on you and, and gosh, someone just insulted me. They don't know what they said. It's nothing. But by God, I was insulted. And I struck back because my anyway, that was the toughest decision, but I'm glad at it. You have to do it. For because we we caregivers have to understand that we again, we don't want to die ourselves before a loved one. Yeah. Anyway.

Natalie: 33:04

You know, so Marty, I don't know the answer. How long did Elaine live in assisted living or skilled nursing before? Because I know that that she passed in 2022. How long did she live there? Because you care for in the home for eight years? Right? Yeah.

Unknown: 33:20

But you see proximately years in assisted living memory care, approximately. Yeah. And so I remember. I mean, it was just you watch your loved one, you know, disappear a little bit every day. So yeah, and thank goodness for the wonderful people that work there how how they can drive up into the driveway, park their car and walk in the door and leave their worries at the door and ended up being patient and compassionate. And it's just a wonderful, wonderful blessing people.

Natalie: 34:04

So I want to make sure I heard you because you said six years. Was it six years that you said

Unknown: 34:09

eight years in assisted living? I think so. Gotcha.

Natalie: 34:13

So, so she lived and so I respect the fact that you said I became a better caregiver. You know, because of this. And I didn't you know, I didn't hear you say I'm a better caregiver because I moved my wife out, my life became better. I think your life I don't want to put words in your mouth. But for me after you know, there was before cancer, there was during cancer and now there's after cancer and and in our life didn't go back to normal. It was different and so I'm assuming you know you've got your life is different. Your routine is different and we all know how much humans love change. We love change, like, we hate change. We like predictability. We like to know exactly what's going on. And this, you know, I heard you say, you know, I hadn't take care of myself, I was irritable, all the things that, you know, we know that caregivers can experience. But we don't typically know because we don't. It's Did you ever see yourself as a caregiver Marty? Did you? Do you see? Or was it I'm Elaine's husband and it's my job to take care of her because she's taken care of me and supported me through my career over these last 45 years. That's

Unknown: 35:28

the correct yes, you name it, he took care of me and so forth. And now I, I and it was sort of, you know, easier to say, Well, I'm gonna take care of my wife with her Alzheimer's very early after diagnosis, because things were sort of all right, you know, but then as it as the disease progressed, then I'm thinking, wow, you know, sometimes I'm really pretty lucky that I have a chance to help her out and be with her and make a difference in her life as she has done it for me as well. So, again, that's why I entitled The book my two Elaine's because I did have a chance to love to Elaine's and it was That's life, huh. That's, you know,

JJ: 36:16

let me my, our parents were, our parents were highschool sweethearts, too, which I love about your story. And our dad passed away, just at 58. But he was always our mom's caregiver who was diagnosed with Parkinson's at 48. But I think how your story resembles there's at least in my heart that he took care of her. And that was very unexpected. When you talk about my two Elaine's, how did your love change more?

Unknown: 36:47

Oh, gosh, I haven't thought about the change. Of that. I don't know if it did change. When I think about it, I mean, this, while she was a different person, she was still the same person. And I No, I haven't thought about that. And, and I just, I just think about, you know, going to sea lane over the course of those eight years and how the disease took its toll. And almost how there were different people to love. Almost every day or every week or every month, as the disease progressed, there was Elaine, who and assisted living, we could dance together. And then there was the lane that we could walk together. And then there was no more dance and there was no more walking and there was the Lane who would sit in watch the birds outside the window then and then that Elaine left me and then there was the other Elaine who, who was in a in a border, told the chair and couldn't walk. And so that was another lane to love and then and so. So I don't know if that was a change of love or what it was. But I know that you asked that question. I guess I'm gonna have to ponder that just a little bit more. It

JJ: 38:11

sounds very unconditional. Marty. It sounds like regardless, but it sounds like there were a lot of a length it sounds like there was more than two Marnie that you've been married many,

Natalie: 38:20

many lanes might have been. As I say, you're I'm like, I'm over here just crying. I'm like, Oh, my God, I love to have someone. And I know that you're not perfect. Marty. I think you even said I was not perfect. But

Unknown: 38:37

that's if that was heard, then we'd better grabbed that.

Natalie: 38:40

No. But I'm just saying, I know that you would say I wasn't perfect, but the unconditional love that you showed, like when you say I showed up and I showed up prepared to love who I received. Like, I think that we can I think we put so much of our own expectations, like you said, you know, how to why I want them to be happy. But you also have to be happy to Marty. And I hear you say and you know, you showed up prepared and even no matter how hard it was to the to go from dancing to go from birdwatching to go from not being able not very ambulatory to it sounded like it was that acceptance of this is where she's at. And this is who I'm going to love. And I know that I'm sure that there were times that you were like this just sucks. This is not what I wanted.

Unknown: 39:34

Of course, you know that? Of course that's that's what it was. And yeah, it's we got we did. It does suck and I count caregivers when I visit with them. It's tough. It is absolutely tough one one of the things that I want to to re enforce if I did To say it and maybe say it another way if I said it before, but because we can't, there's no cure for this disease. When Elaine was diagnosed like 20 years ago, there was no cure, it couldn't be prevented today, there is no cure, it can't be prevented. And so we can't fight this disease head on, but we can make the determination that we are going to help our loved one and ourselves live our best lives possible. That is something that is a realizable goal, to help the best life possible. And so in order to help our loved one, the therapists life possible, we as a caregiver, have to live our best life possible, so that we are emotionally intellectually physically equipped to to be the lifeline for for a loved one. And so once I sort of got that into my head, that my love for Elaine can best be shown by helping her live her best life possible. And some of it was really easy, you know, sitting and listening to crazy, crazy. You know, who is that one?

Natalie: 41:09

I see Klein, as the client

Unknown: 41:13

I have been named would know that. I forgot that she'd hit me aside, Dougie, what do you get 3 million time. And so anyway, so the goal is to help our loved one live their best life possible, which gives us a doable, and to help ourselves live our best way possible. That's a doable, so it's not all hopeless. We got to discover.

Natalie: 41:37

So let me ask you this, because we have a hit on this because we've had on just you and Elaine, you all have children, adult children. And how what? Well, where did because I know what it was like for us with when our mom when our dad was alive. And I'm over here being the adult children. And then, but our dad passing was very sudden, and it pushed us into a role that we really were not prepared for we would self proclaim, we were not prepared. We were like total dumpster fires, and our mom wasn't prepared to receive it at from her children. So what was the relationship in the sense of J like the I know, your scrunchie eyebrows, she wasn't prepared to receive it, because I don't think she wanted to acknowledge it. In the sense Marty. She was hands off and said, I will control my money. I will control this. I've got this even though she was her illness was progressing, until we had a crisis event that we had to step in. What?

JJ: 42:31

Go ahead, yeah, go ahead. Did your Do you feel like they supported her? Or do you feel like they were more of a support for you? How did the family How did you get because you're a big family? How did you guys support one another? All

Unknown: 42:43

right, here's another thing I learned by seven. And because of mistakes I made. So Elaine is diagnosed, I'm the one I'm the I'm the husband, and I'm the most important of this whole thing, never stepping back, and actually sitting and talking with the kids about how they feel. I am grieving and I'm going through all of this, but I've never stopped and asked them how they were doing. And so I also learned, too, that there that I have no right to tell anyone how to grieve, how to deal with the loss of their loved one. So now the children and I, I made the mistake of not bringing them along with me on on this journey sooner than I should I was wait, they're elected and doing that. But then we started to talk and they began to be very supportive. And I was I was fortunate that that they would do that. Of the four children. I have one son who wants one or two remember his mom as she was. And so that was his decision. And, and so he worked at at doing that by and so then but my two daughters were, were there to be helpful and to be of attention, patience. And again, I go back to the point where I did a horrible job of helping my children through the grief that comes when your mom is ill. And you know, fortunately, I am living long enough to tell them I'm sorry about that. And that we can, you know, do other things together.

Natalie: 44:39

Yeah, I think you know, Marty though, I think when you're in the middle of it, and if you think about how, how are we as humans work and how our brains work. You know, you can say it's hindsight is always 2020 and you can look back and be like, Oh, I should have done this or should have done that. And as a caregiver. We are extra hard. on ourselves to say, I should have done this. I mean, honestly, there's a lot of times I'm like, Man, I should not have said that. Because, trust me, this mouth gets me in trouble. And it has my whole life. But I think it's hard to give yours. It's, I would say to everybody give yourself grace. Because, you know, you said I really, I didn't bring my children alongside of me. I don't know that you were in a place thinking wise you get all this on you have all this stuff on you. That you think to gosh, I should probably include my children in this on this this dumpster fire. I should I should include them or I think it's always we can always learn from it. And I think you're right about AI vision, like a little bit of like Forrest Gump, where you're like, come sit next to me on this on this on this seat. And let me tell you what I did. And if you take one piece of it, it might make your life a teeny bit better. Just one,

Unknown: 45:55

I hope everyone on this visit. heard what you said the shoulda COULDA, WOULDA and I, Natalie, I hope you were what you said because it is, is it not something that we've got to you know, just shrug off because we can't we live it. And we may be we knew we were doing our best or thought we were doing our best at the time. And so yeah, we can beat ourselves up all over the place if we want to. But that's not smart. The Mate not does does not even make common sense to do that. And so we can I help. Okay, so, yes, I will I will be reprimanded.

Natalie: 46:42

Oh, my gosh, you need

JJ: 46:44

no reprimand? No, no. Or the fact that you I think, you know, even looking back and saying, Well, I wish I'd done this differently. I think the the willingness to share those lessons learned that's that for everything Marvy because I think what you the way that you pass on both that knowledge and those blessings. That's, that makes all the difference. So no apology needed. You you have you have made up for it.

Natalie: 47:12

You know, it's it's, you know, Jay, we could talk to Marty for a very long time. I know. But I can tell you I've let us go longer because I love I love Marty already. Okay, it's time for Sister questions. You know,

JJ: 47:25

I have an easy one, I think, Oh, I you got to think hard on this that Marty. So I love the story of you and Elaine and I think about the things that again, mom lost as her disease progressed. She was an excellent cook. So you said Elaine was an excellent cook. What was your favorite recipe? family recipe that Elaine made? What was your favorite food?

Natalie: 47:48

Oh, I love that beef

Unknown: 47:49

stroganoff and we've made that for more than one or another and, but then also when we were in the in a governor's residence, we wanted to keep costs down. And while this was not my favorite, it was the cheapest. I shouldn't say cheapest. It was the most reasonable per person. And that was squat. I'd say I had more squat. I started chuckling like like a chicken. But no Elaine was great at at making beef stroganoff and and Caesar salad. Yeah, those were those were just those

JJ: 48:27

were Mainstays that were your favorites. I got it. I always love family recipes. So that's fantastic. I

Natalie: 48:33

love that you said that while you were in the governor's office that you guys were being cost conscious. I think every citizen in Wisconsin wishes. Thank you. And they're all like thank you for Texas.

Unknown: 48:43

Yeah, but every everybody liked it but the squabs because there was a reduction in their overall squad popular. You know what a squad. No, I don't know what a squad. Sorry. A squad is a small chicken. And it's not a chicken. It's a it's larger than that though.

JJ: 49:01

Like a quail? Maybe. Yeah, that will be something like a quail.

Unknown: 49:05

Yeah, it's something that but it's it's a small. It's a small breed of chicken. I guess that's it. I could go I could do that. But anyway, it's

Natalie: 49:14

hilarious. So Okay, and here's my favorite question. This is always my favorite question. I think I tell Paul I was gonna ask is what is your favorite guilty pleasure? And what that means is what is the thing that you love to do just for you, that you love.

Unknown: 49:30

It used to be boring. And and so that's no longer possible because of a but anyway, so I think to sit in, in my garage with the door open by the doorway, reading a book in the sun. I think that's really the thing I enjoy doing the most I enjoy, you know, history and historical fiction and ends Oh, fourth, but I think I think that would be my, my most favorite thing, my most favorite thing to do. And then of course, just just to be with the family, you know, like, say a Thanksgiving time and just and just to be together, I think. Yeah, I think I sit in and it's really cold and dreary. And sometimes I get the thing I'm looking at the window, and just seeing it's rainy and, and so forth. But so I won't be sitting in the sun. When I say in the garage, I mean by the garage, okay? In the garage itself, but by that, by that by the garage judgment

Natalie: 50:38

free, but you know what, Marty? It's sunny in Virginia. And so if you ever feel like if you're ever down this direction, you're always welcome over here with the Hadees. And I know JJ is down in the keys. So always here, she might be a bit more attractive in that sense, because she's down in the Florida down

JJ: 50:56

in Florida. So you're a lot of sun here. You

Natalie: 50:59

got a lot of sun for you on the East Coast. Oh

Unknown: 51:02

my goodness in that's why.

JJ: 51:06

I'll send you my address. Just one day, we got a lot of sun. You'll have to be in sunscreen, but you have

Natalie: 51:12

to wear sunscreen. I'm gonna tell you, Marty, thank you so much for being with us. You have blessed us I've it has been such an absolute pleasure to get to hear about you to hear about Elaine and your children. But just hear about your words of wisdom that you can share with others because it's absolutely resonated with me. Well,

Unknown: 51:35

thank you, I, I feel very privileged, as I said in the beginning to be with you. And again, I just admire what the two of you are doing and how you're doing it. So, so thank you, we caregivers, we need your help.

Natalie: 51:47

Oh, thank you, Marty. Okay. All right, guys, until we confess again, we'll see you next time. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again, till then take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors, or hosting company. This podcast is copyrighted and no part can be reproduced without the expressed written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.