Role Changes in Caregiving with Martin Schreiber Part 2

In this episode, Steve and Virginia speak again with Marty Schreiber about the deeper emotional side of dementia care. Marty explains why simple things like holding hands or singing are so important for staying connected with a loved one.
He shares advice on how caregivers can "join their loved one's world" instead of trying to correct them, and discusses the ongoing grief that comes with the disease. Marty also reminds caregivers why it is okay—and necessary—to use humor and take time for themselves. It is a heartfelt conversation about finding peace and joy in the present moment. 

Transcript

Steve: 0:06

From the University of California, Irvine. This is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias. Well, welcome back to Spotlight on Care. This is part two of our conversation with Marty Schreiber. Martin Schreiber to be official, the former governor of Wisconsin and amazing caregiver in terms of his journey with his wife, Elaine, also an amazing author of a fabulous book called My Two Elaines. I'll comment a little bit more on that at the end. So Marty, picking up from where we were, you talked about something that really rang true to me in our conversation, and you talked about the importance of touching. Want to talk about what you learned there?

Marty: 0:57

I want to hop back again to helping our loved one live their best life possible, and among the ways we do that is for hearts to touch. What happened was Elaine and I were at assisted living memory care in the cafeteria, and while we're having lunch, she looked at me and she began to cry. I said,"Elaine, why are you crying?" Well, she looked at me, she says, "I'm beginning to love you more than my husband." And I didn't ask her, "What's wrong with your jerky husband?" I didn't do that. But here is what that meant to me. It meant to me that it was not necessary for her to know my name for our hearts to touch- that hearts can touch by holding a hand, by giving a hug, by singing a song together, by giving a smile, by just being together. And there is no question that it's painful when our loved one no longer can remember our name. But it's not a memory game. What it is, it's helping our loved one live their best life possible, and among the ways we do that is by hearts to touch. Maya Angelou, the poet, said, "I may not remember what you said. I may not remember what you did, but I will always remember how you made me feel."

Steve: 2:06

And that can happen many different ways through this journey. I think accepting the fact that they've forgotten your name is important, but also their inability to even talk as you go along. So then it really becomes an issue of connection through touching and feeling and hugging. I won't bore everybody with a repeat of my story with Patty, but let's just say at the end, I got closer to Patty through touching than I ever felt as we were on our journey together just by holding hands. Okay, you have this famous word,"anticipated grieving," and you talk about this was a learning that you experienced. So please

Marty: 2:45

I share with people that I had a friend who was the late share with us. 70s, very healthy, doing well, has dinner one night and goes for a walk and gets a massive heart attack and he dies. There was a funeral, and people came by to express their condolences, they express their sympathy, and there was closure. Well, an Alzheimer's caregiver never gets closure. What happens is, we see our loved one leave us a little bit every day, and I think what happens is we don't understand that among the experiences, the feelings that we're going through with depression and anxiety and worry and all of that, but also what is happening is we're going through a grieving process. We know our loved one is leaving us, and so it's beginning for us to understand that we are truly grieving because we're losing a loved one. If we can understand that, I think it can help us. There's layers of feelings that we have, layers of emotions, and I don't know if you want to call it a bed with five different blankets on it. One of the blankets is, of course, worry and anxiety and depression and others but then there's another blanket, which would be the grieving blanket. And so we've got to open that up, we caregivers, so we understand the reasons that we feel as we do, and then not hesitate. Steve, peer support groups, thinking about counseling or just thinking about knowing, by gosh, I'm going to give it a real cry. I'm going to just really let my grief come out because that is helpful to me in how I continue my living and my caregiving. The name of the book is My Two Elaines, but I want a caregiver to understand that if your name is George, there has to be two George's. If your name is Mary, there has to be two Mary's. There had to be two Marty's. And I'll tell you why. The first Marty had to be right on everything. The first Marty refused to have any help. The first Marty didn't understand what moments of joy were like, and so the first Marty had to make a compassionate transition from Marty who knew everything and arrogant, into Marty the caregiver. And what a difference that made. So when Elaine was first diagnosed, the doctor said

there were four things: 4:54

Namenda and Aricept delayed the symptoms, then socialization, which was so very important, walking, which is the best exercise for the brain, and a glass of red wine every evening. When Elaine got four weeks ahead with a glass of red wine every evening, and three weeks behind with the walking, but let's talk about walking. What is a walk? The best exercise for the brain. How are we going to do that? Well, it's a half an hour this way and a half an hour that way, and we're done. The first Marty is walking with Elaine and Elaine says, "Look at that beautiful flower." "Well, come on. We have to get this walk in." "Or do you hear the bird?""No, come on Elaine we have to get walking." That's the first Marty. Marty, the compassionate caregiver, understands, if his wife sees a beautiful flower to look at, you take the time and you share that moment of joy, and you look at the beautiful flower together. If you're walking and you hear a bird and your wife would like to hear that bird, you take a moment to understand it. The second, Marty understands it's not necessary to be right. The second Marty understands joining her world. And so please understand, caregivers, that you have to make that compassionate transition in order to help your loved one live their best life possible, and in that compassionate transition to know that you have to take care of yourself.

Steve: 6:19

Well, that's a great segue. Let's talk about incorporating laughter and how you learned about how valuable laughter was.

Marty: 6:26

`Well, let me tell you, I enjoy making people laugh, but I gave a talk, and people came to me and say, "Oh, I'm so glad I haven't laughed in a long time." And so I was with a person, and that person said, "You know, when people tell you that they're experiencing anhedonia." Now, what is anhedonia? Well, that is a description of a term meaning "unable to feel." It's a description that comes about not really sensing in life what's going on around you, caused by severe distress and anxiety. And so what happens is we caregivers become so passionately involved in helping our loved one, we become so intense, we become so focused, that we lose our ability to relate to that which

Virginia: 7:12

remember that. is around us, like, for example, enjoying a laugh. Music is so

Marty: 7:13

On Virginia's point, if you look at it, how horrible important to help our loved one through, but also humor, making that is. But by the same token, to realize that this is a—yeah, sure that we understand and look at things. Yes, it's not the way we don't like how that had happened, but we can evoke our we want it. Yes, it's probably a little dark humor, but by gosh, there's time for a moment to feel a lightness of spirit, and emotions, and we can smile and have fun and be close to one because we can feel a lightness of spirit that's going to help deal with the overabundance of cortisol that builds up to cause all kinds of problems and so forth. I tell people about laughter, that this disease takes us to places we never thought we would be. another, and hearts can touch.

Virginia: 8:28

Yes, and they did.

Steve: 8:30

You mentioned a little bit about respite time, and you know, you were caregiving for quite a while. How did you incorporate and what did you learn about finding respite time for yourself?

Marty: 8:40

One of the things that if you don't get it, you're going to turn into an irrational, irritable person, which helps nobody, offends many, and destroys relationships. Again, we get to caregivers needing to live their best lives possible at the same time, and when I was finally able to have Elaine admit to going to daycare, also when she went into assisted living memory care, finding a little bit more respite time, but that really maybe was little bit of a beginning of the healing process of what this disease has done to a caregiver.

Steve: 9:13

Well, that's a really good segue. Again, you're so good at this, my friend, talk about the emotional journey that you went through in terms of how you felt. You called it beyond the physical part of your health, but the emotional part of your health, and maybe we'll end up there with being alone. You talked about that. I think that was pretty meaningful.

Marty: 9:34

One of the things that was happening on this journey—I was gaining weight, a lot of weight, and having trouble breathing. Doctors couldn't figure out what was wrong. And we go back, if there's one thing worse than Alzheimer's, it's ignorance of the disease. It was, I believe, the psychological, emotional impact of what is going on. I mentioned the word cortisol before—that's in the body, and it's really the fight or flee kind of chemical. You develop too much of that because of anxiety and worry and depression and so forth, and going through all of this, hundreds of thousands of dollars of hospitalization and so forth. But if we would have said, what is causing Marty's problems, above and beyond the fact that maybe he needs medications of some heart special or breathing thing and well, what it was, it's beginning of realizes, psychological, emotional, depressing, grieving, all of this mounts up to causing severe impact on the body, and we've got to realize that not only that an impact on the body, but they impact on the mind. And there again, 40% of caregivers die before their loved one due to stress-related illness. And so be aware when you're not feeling so hot, it could be just really severe, psychological, emotional kinds of things that need a special kind of help rather than a medical doctor.

Steve: 10:51

You talked about being alone and learning about being alone. What was that like? What was your learning there?

Marty: 10:58

All of us just try and do the best we can at the time. And I can remember just when leaving Elaine, at assisted living memory, when I would leave her at night after dinner and all alone, and just trying to figure out what the next step is, trying to grapple with the reality of the situation. Look at your faith, try and figure out whether that's something you deserve or not deserve, trying to make the best of what you got.

Steve: 11:22

How did that lead to your closure?

Marty: 11:24

Well, it's hard to sort of nail down these kinds of things, because it happens almost drip by drip. What helped with closure was to realize that maybe if I could help other people deal with this challenge of caregiving, that might be a good thing, because I know Elaine would want that. I think closure came by knowing that Elaine, I could not ask her to survive for another minute based on what the disease had done to her. And I think also closure with my children giving me their love and their support. And I don't know if anyone ever gets complete closure. And I'm sure that you and Virginia think about your loved one many times and just take the time to say, thank God for those wonderful moments we had together, because they were so very, very special. One of the things that I intensely feel sometimes so fortunate that I could love two Elaines, so fortunate that this woman who did everything she could for my life to be good and successful and helpful, that I would be able to help this wonderful person on her journey too. I think I'm closer to closure now, by the same token, never, ever do we let go of those memories by the grace of God.

Steve: 12:37

This might be a tough question for you, and I didn't ask it, and it's not on the list. What was her passing like? What was that time for you, Marty?

Marty: 12:45

With Elaine's passing, as I said, the disease impacted on her body so that the body no longer worked. The disease impacted on her mind so that it no longer worked. And my really, joy in life was just holding her hand whenever I could be with her and when I had to leave to go home, I took great comfort in the fact that, at least I felt that she was getting compassionate care. I could never say it's good that Elaine passed away, but it was relief for her, I think, a comforting relief she didn't have to deal with this anymore.

Steve: 13:23

Okay, you have a great phrase that you've used with me, and it's—I believe I saw it in the book as well. You talk about dancing in the rain. Why don't you share with us, then, what dancing in the rain is all about?

Marty: 13:35

Well, thanks, Steve, and I want to share that with caregivers as well. There are things that are going to be happening that we don't like. When bad things happen, we can either yell and scream and even revolt, or what we can do is step back, understand what is and then determine how we can make the best of it. When bad things happen, we can feel so sad and destroyed, really, but I come to the point where I read rather than worrying about the storm to pass, to try and learn how to dance in the rain. How do we make the best of what we have when we know we can't change it as it relates to the impact of this disease? And then we get to Virginia's point about joining the world of the person who now is and make sure we look at the humor of it all and—

Steve: 14:22

Think your point is, I might add to it, it's not dwelling on what you're losing. It's understanding of what you have now. It may not be what it was, but it is what it is. And enjoy that, participate in that, make that a joy in your life, and that's dancing in the rain. Well, is there any final thought that you would like to share about your journey? You've been awesome, man, I might add, he has given over 1000 talks, this man and talk about commitment to caregiving and to caregivers, Marty, you are an example for all of us.

Virginia: 14:59

That's what I was gonna say. You're doing such wonderful work. You probably experienced what I did. My mom came down with Alzheimer's in 2005 and there were no resources. For books, I went to a bookstore, and I went to the aisle where I thought I might find something, and I sat on the floor, and I went through two books, and now you go to Amazon, and there are hundreds of really wonderful books, and yours is right up there at the top. And everything that you have said in our podcast is really very helpful to so many people, and we thank you for that.

Marty: 15:38

Well, thank you. To be able to give back, to be able to think you're helping caregivers, learning, coping and surviving, it just is such a—well, the two of you know what it feels like because the two of you make a difference in people's lives. It's almost like habit forming because someone mentions that they maybe were helpful. Well, now I want to help somebody else. So to be on your show, to be with you guys is a really special privilege. And thank you very much.

Virginia: 16:04

Thank you.

Steve: 16:04

Well, thank you, sir. You are a as I say, a shining star. You are a bright light. God's with you, walking with you and helping you in your journey to help others. That's very clear. And just one more mention about Marty's book, again, My Two Elaines, and we might even say it has a little bit about my two Marty's in which is a great story. The book is a guide. It's got all sorts of anecdotal information about the process. It's got some great research, but it's a guide to how to make this work. It's not just a story about Marty and Elaine. It's also a guide. And if you have one book that you're going to think about buying, this is the one to buy. And he uses the money not to profit, but to pay for the types of things that he's doing with us and the speaking and the other things that are going on. And so, God bless you, Marty.

Marty: 16:58

Well, thank you, Steve. You're so gracious and you're so kind, but thank you again. My honor to be with you.

Virginia: 17:04

Thank you so much.

Steve: 17:06

Spotlight on Care is produced by the University of California, Irvine - Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment, should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu.