Love Conquers Alz

MAX SHERMAN: Former Texas Senator/Author of “Releasing the Butterfly: A Love Affair in Four Acts” -A Caregiver's Story and Journey

May 17, 2024 Max Sherman, Susie Singer Carter and Don Priess Season 8 Episode 89
MAX SHERMAN: Former Texas Senator/Author of “Releasing the Butterfly: A Love Affair in Four Acts” -A Caregiver's Story and Journey
Love Conquers Alz
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Love Conquers Alz
MAX SHERMAN: Former Texas Senator/Author of “Releasing the Butterfly: A Love Affair in Four Acts” -A Caregiver's Story and Journey
May 17, 2024 Season 8 Episode 89
Max Sherman, Susie Singer Carter and Don Priess

“I’m a lawyer by trade, politician by practice, and an academic by accident.”   These are the musings of the remarkable, and I have to say, charming, Max Sherman.   

In Episode 89, we interviewed a young and energetic 89 years old, Max Sherman. Max's  life has been significantly influenced by women. But one in particular has shaped who he is today. In 1953 Max was among 4 high school boys conducting a church service at a local jail when he first laid eyes on a Gene Alice, who was there with her fold up field organ. And their love affair still thrives to this day...  

In 2002 Gene Alice started noticing that something was different and soon after was diagnosed with Alzheimer’s.  Through the inevitable progression of the disease Max and Gene Alice’s journey together is now chronicled in the beautiful and poignant memoir, “Releasing the Butterfly: A Love Affair in Four Acts”. It's a  caregiver's story and journey.  An honest, heart wrenching and insightful look at not only the disease but of a bond that could not be broken.

Max shares many of the insights he has gained as a caregiver, and thoughts on how to maintain connection even while grieving the losses of the fading abilities of a spouse living with Alzheimer’s.

Max boasts a rather formidable body of work which includes: Texas State Senator, President of West Texas State University, and Dean of the LBJ School of Public Affairs. His leadership roles also include President of the National Association of Schools of Public Affairs and Vice President of the Harry S. Truman Scholarship Foundation.  AND recently he was honored as an 80 over 80 recipients.

 Don and I had the best conversation chatting with the author of this ode to a 70 year love-affair that will warm your heart and make you want to fall in love all over again!

Support the Show.

JOIN THE MOVEMENT FOR NURSING HOME REFORM BY SUPPORTING THE COMPLETION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE or GO FUND ME
Follow us on Twitter, FB, IG, & TiK Tok 💜
Listen on your favorite platform 💜
If you like what you hear leave us some love. 💜

Show Notes Transcript

“I’m a lawyer by trade, politician by practice, and an academic by accident.”   These are the musings of the remarkable, and I have to say, charming, Max Sherman.   

In Episode 89, we interviewed a young and energetic 89 years old, Max Sherman. Max's  life has been significantly influenced by women. But one in particular has shaped who he is today. In 1953 Max was among 4 high school boys conducting a church service at a local jail when he first laid eyes on a Gene Alice, who was there with her fold up field organ. And their love affair still thrives to this day...  

In 2002 Gene Alice started noticing that something was different and soon after was diagnosed with Alzheimer’s.  Through the inevitable progression of the disease Max and Gene Alice’s journey together is now chronicled in the beautiful and poignant memoir, “Releasing the Butterfly: A Love Affair in Four Acts”. It's a  caregiver's story and journey.  An honest, heart wrenching and insightful look at not only the disease but of a bond that could not be broken.

Max shares many of the insights he has gained as a caregiver, and thoughts on how to maintain connection even while grieving the losses of the fading abilities of a spouse living with Alzheimer’s.

Max boasts a rather formidable body of work which includes: Texas State Senator, President of West Texas State University, and Dean of the LBJ School of Public Affairs. His leadership roles also include President of the National Association of Schools of Public Affairs and Vice President of the Harry S. Truman Scholarship Foundation.  AND recently he was honored as an 80 over 80 recipients.

 Don and I had the best conversation chatting with the author of this ode to a 70 year love-affair that will warm your heart and make you want to fall in love all over again!

Support the Show.

JOIN THE MOVEMENT FOR NURSING HOME REFORM BY SUPPORTING THE COMPLETION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE or GO FUND ME
Follow us on Twitter, FB, IG, & TiK Tok 💜
Listen on your favorite platform 💜
If you like what you hear leave us some love. 💜

Don Priess:

When the world has gotcha down, and Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz, a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie singer, Carter, and me, Don Priess.

Max Sherman:

Good afternoon. I'm Susie Singer Carter.

Don Priess:

And I'm Don Priess. And this is love conquers all calls. Hello, Susan.

Max Sherman:

Donald, how you doing?

Don Priess:

I'm swell. What is the word? What do you don't? Well, you know, I mean, that's a matter of opinion. But I think I'm swell. So

Max Sherman:

I am. I am swell ish. Yeah, yes. I'm swell ish. Yes. Yeah. Well, it's been a nonstop and busy and busy doing things and like, we're we are both busy. But let's see what we had. We had my two Rugrats for the weekend. I had. I was, I had a three year old, four year old and my 16 month old granddaughters for the weekend, and I am exhausted and and like the house was like a, like a hurricane happened. Like, I don't know what happened, I think is it possible to have too many toys? Apparently,

Don Priess:

it's not. The amazing thing is it's literally a disaster area within the first 11 seconds that distribute the toys at a rate that is actually humanly impossible.

Max Sherman:

And yet, and yet it's done before our very eyes before our very eyes. But um, yeah, it's pretty extraordinary and skillful. I might add. Yeah, so but but loads of fun. We had a slumber party. We had, you know, so all those fun things, girly girl stuff, and, you know, all that things. So I enjoyed that. And on the on the business side, where we're, we're at the finish line of our documentary, No Country for Old people. And we're at that point where we're, you know, bravely taking notes from strangers and others. And so difficult, so difficult to hear other people's, you know, it's like writing a book or like our our guests. That's going to be on in a couple of minutes. I'm sure he's had the same feeling when people come in and start chopping your your baby up. And you're like,

Don Priess:

wow, stop. And that's your opinion.

Max Sherman:

Yeah, thank you. Yeah, yeah. But, but that's where we're at. And we're being brave. We're being brave big girls and big boys and listening with open ears, and open minds ish. And that's what we're doing. Absolutely. What I will remind you that we're still raising money for the finishing funds, and it's all tax deductible. If I'm sure you're, you know, if you listen to us, you probably know this already. But, you know, we would, we're taking donations still through the national consumer voice for long term care. And they are incredible. And they are our partners, and it's 100% tax deductible. And, but we're very close to getting this out there for everybody. We hope that it makes a big huge change. And we're proud of our work. So

Don Priess:

absolutely. Because we're not doing this for ourselves. We're doing this for you know, the we're trying to everybody, save the save everyone from going through what Susie went through and what what countless people are going through right now, every minute so as

Max Sherman:

as we speak, we need to change our long term care system. Now, so stat, right, but that's what we do. It's like what when something when you go through a crisis of any kind or a challenge, and then you know, you learn then you I think that that is important to pay it forward. Right? And so that other people can benefit from your experience, like, guard next guest right,

Don Priess:

indeed. So

Max Sherman:

Don, why don't you? I know, why don't you do a lovely introduction, and then we'll get into it.

Don Priess:

I will do that. Right now. I'm a lawyer by trade politician by practice and an academic by accident. These are the musings of the remarkable Max Sherman, a former Texas State Senator president of West Texas State University and Dean of the LBJ School of Public Affairs. His leadership roles also include President of the National Association of Schools of Public Affairs and vice president of the Harry S. Truman Scholarship Foundation. And recently, he was honored as an 80 over 80 recipient. Now a young and energetic 89 years old Max Sherman's life has been significantly influenced by women, but one in particular has shaped who he is today. In 1953, Max was among four high school boys conducting a church service at a local jail when he first laid eyes on Jean Alice, who was there with her fold up field Oregon, and their love affair still thrives to this day. But in 2002, Gene Atlas started noticing that something was different and soon after, was diagnosed with Alzheimer's. Through the inevitable progression of the disease Max and Gene Alice's journey together is now chronicled in the beautiful and poignant memoir, releasing the butterfly, a love affair in four acts. And honest, heart wrenching and insightful look at not only the disease, but a bond that could not be broken. And we are so excited to have the author of this ode to a 70 year love affair with us today. So let's say hello to Max Sherman. Hello, Max. Hello, Max.

Max Sherman:

Hi, Don says we I'm delighted to be with you. Thank you, we're delighted to be with you. Everything about who you are, and your your love your incredible love. lifelong love resonates so deeply with with us. And in your compassionate caregiving is just so beautiful to to read about and to learn about and, and just just really goes with our, our show love conquers all, because that's really what you did, you use the love, and you're still using the love, right?

Unknown:

When we were together just a short time before, we're talking here. And we were sitting there and she has her head there and, and so I've learned if in my raspy voice, I would sing to her. So I was singing old song that everybody knows, and I'm not very good at it. But I said morning as Robocon in the first morning, she likes or even raises it up and opens those hazel eyes, and I just melt. And then we've learned in Alzheimer's, you have to read different signals. And one of the signals that we've learned is that the way that we kiss now is a little different than when we used to kiss on the lips. And really, anybody talking to it, she will. That's three big kisses. I got five of those big kisses this morning after singing that song. Live still goes on. And it's great. We've learned to make love in a different way. And absolutely every moment is just as precious as it was when we first started. And I had that first little peck on the lips that she gave me when we were just a bunch of kids

Don Priess:

definition of a silver lining,

Max Sherman:

ya know, it's, it's so beautiful. And it's such a great, it's a it is the, the its opponent your poster child for for the best kind of approach to this kind of journey. You know, and it took and I know from reading your book and also listening to you talk on other interviews, you know that it is a learning curve, right? And that, you know, we and it takes it takes that, you know, the tripping over ourselves and realizing that okay, this isn't working. Because, you know, I always say that when my mom was diagnosed, I was I was certain that I was going to be the one that cures this for you other people can't but I will write until you realize that that monster is way stronger than all of us. And now I'm you know going to have and then I figured out how to lean into my mom into every stage and learn how to re communicate with her like you're doing with with Jean Alice, which is like it is so rewarding and so beautiful. And yeah, I just really, really compliment you on on going going the distance the way you are.

Unknown:

She could I maybe just pick up on that because is I've been asked to talk about the book with different groups senior citizens and and we live in a senior retirement community. It's a wonderful place. But most people probably here because somewhere in their lives, either a parent or grandparent or someone close has been touched by Alzheimer's and everyone's afraid Well, it might happen to me or it might happen close to me. And so I I don't think we're ever prepared for it. And in is I met with these groups. That chapter I think is chapter 46. And it's one page in the regular page books. And it's an another in the large printed book. But it's only about three pages. It's very short. But it's makes the point that you were just talking about, because I was making all the decisions. I picked out the clothes she wore, I pick the food that we ate, I took us wherever we needed to go. I chose what we watched on television, I was really trying to be the fixer. And I can fix this Well, I'm not going to fix it, I finally realized. And I said that what was happening is that I was stealing my love from her nibble by nibble little by little by doing that every time. And I had to learn that I was not the drill sergeants. I was not the one who said Get In Line step up, you're going too slow, you're going too fast. And all of a sudden, it just shocked me that all I needed to do was just shift gears. Nothing big. It's like making love and then the world of Alzheimer's is shifting yours. And mine was Jeannie, would you like chocolate or vanilla ice cream? Would you like to watch the news? Or would you like to watch a musical tonight? Would you like to wear this blouse or this blouse? It almost always she would say, Oh, you decide. It wasn't up. But the most important thing, the most important thing, the headline of that chapter is she wanted to be asked, because she was cine she was teen Alice. She was not a child. She was not a person in the army 100, the drill sergeant, she hit her unique personality. And that to me is the chapter in the book that was my wake up call that I had to do it differently. And all it was is shifting gears in love making is shifting yours. And the little is a kiss just as much as a big smack around the lips. It's a beautiful kiss. I love every one of them. I would not ever take one of them back. And it's different than it was but you put your finger on it.

Max Sherman:

I love that. Yeah, wow. Yeah, I think I think there's a lot of consistency in that journey with people that have, you know, decided to step back. And really take a look at at how we're interacting with our person with the person that we love. And looking to find them at the stage that they're at, like I could find my mom, I could still, you know, we shared music too. My mom was a singer. And so music became really important like you did with you. And Jean. So I think that, you know, I related to that as well. And that it is like you said it's magic. And you know it is it lasts till the very bitter end. And and it made my mom so happy. And it really was our our love talk, you know, and then we also shared a sense of humor. And so we, I would always come in with something, you know, to catch her off. And she'd give me that big old smile, like, you know, even when she lost her ability to just to articulate words. But she was talking to me, I saw it. I knew it. I just I would I became I became the words for her. Right? Yeah. And that's and that is it. There's nothing more beautiful than that. Because, you know, when we accept as we accept the person, and also what you said, like acknowledging that they are still who they are, is their soul as who they are inside. And so we need to we can respect it. We don't need to, but we can, and it's better.

Unknown:

When you know you, again, you've probably had this experience with your mother. But one of the things even again this morning, when we have these moments where we're really connecting in that way, and it's all of a sudden, she doesn't talk now. But all of a sudden she's really talking, making attempts to talk getting something out there. Because you can tell that you've resonated you touch something. And the same is true. And the reason that I started this morning by saying to her is that she's a pianist. She's an organist. She's a beautiful musician, and music actually reaches in and when those things happen, she responds. In our senior living facility last night a woman did a series of things, composers and played the beautiful piano and finished up with a Scott Joplin number 10 He used to play Scott Joplin all the time. And I would always ask her what play the entertainer in Boy, she would pound that piano and play the entertainer. And probably one of the, if we play the entertainer, she perks up and gets up and looks in the mirror looks at me, and she's right there with you. And I think that I think we don't always grasp the potential of music is reaching into mind that we don't understand. As I understand it, we don't now know how it all works. We have some ideas and sciences worked on it. But we're still trying to figure it out. But you do know, there are certain things that connect, and those are there be treasured.

Max Sherman:

I agree. You know, I loved what you in your book, when you talk about, you know, there's parts that you spoke about your wife on in the beginning stages, and her experience of the those beginning stages and how she described them. And I always find it fascinating because I used to say, my mom and I were so close. And I would I wanted, I missed I kind of missed my moment, because I was such an throes of it have to really sit down and say, What are you feeling? Like? What is this? Like? You know, and you talked about the fog and that connection? You know? Can you tell our audience like that part of it? What, what's your wife in the beginning stages she starred, she really articulated a lot of what it felt like when she would get lost, or right. And that I found that I think that's so important for us who don't have to really understand that the fluidity of it because it comes and goes in the beginning, correct? Well,

Unknown:

I think so I think, you know, she really was the one who put her finger on it about 12 to 14 years before it hit like a tsunami. And just overpowered as she said, you know, we we built a new home when we both came to Austin, Texas. I was needed the LBJ School and she was head of the Conference Center. And we had very active lives. So we in December usually had about five different events in our home where we had different groups in from academia from, from business from law, because I was a lawyer in the early days, on and on. So we had these different groups in large numbers, and the house was built to entertain. And after we sat down to have a glass of wine, about New Year's Eve of 2002. She said, You know, it's the first time that I've had time trouble remembering all the names, and she could remember hundreds of names and new people come in, she would greet them by their names have their first name. And she said all of a sudden is the first time. And it's the first time I've felt the pressure of getting prepared for these events. Because she used to just love it as we had our assignments. And she did get put the food together. And my job was to clean the windows and polish the floors and do all that. But she said it's the first time so we were able to get an appointment at the Brain Health Center in Dallas, in 2003 in January. And we went up and they did a two, two day evaluation. And so they had all this material. And the main doctor, there is a very distinguished doctor at Southwest medical school. And he's the one that supervise and so out of that we started doing regular checkups, but she would always every year we would met with Dr. Hart. And he'd been asked questions and he had about four interns with him to teach him how to work with people who were struggling with dementia and Alzheimer's. And he's a great, great, great doctor. And so I got a chance to watch it over the years a very thing you asked him about. And one of the things he said that to me is critical is he said, you know, she shouldn't be getting worse, but she's not. She still has impeccable appearance. When I asked her a question, she looks me right in the eye. And he said as long as that's there, they said we're rare, maybe issues where she takes the grandchildren to school and gets lost. Or she's going to meet some friends and takes a turn the wrong way. So those were the little signals and she talked about those. But in by and large, she felt competent. And then she is an organist in our church. The Oregon there is actually named for her because it's a big, big beautiful Oregon and she was a great church organist. And we dedicated it on her birthday in 2014. And we had the fella who does a Watermaker orgy at Oregon and Philadelphia it came down to play for it. And she was in the audience of church was full of people friends from yours from our church. She was in her element and And we did two events with friends musicians, one time friends and x. And then one month later, is when all hell hit. And then suddenly, the ticker flare up because she had been Ojai going strong, loving every moment of it, boom, all of a sudden, that whatever triggers in the mind hit and that's when I shattered a femur and had to go to the hospital for three or four weeks to recover. And get back to it, our kids had to make the decision for her to. And I think it's important for your listeners, because I think I am a person who's done things I am a fixer. And I probably if I hadn't shattered the femur, we might not have made the move we did for her to have good professional care, I might have tried to put it off and put it off and put it all. But all of a sudden, I'm not there, that our kids had to deal with it. So I think one of the dangers for for all of us here are caregivers is that we think we can fix it. And I will have to admit, I plead guilty. I plead guilty. I plead guilty. I thought I could fix it. And, and all of a sudden, I had to realize I could not fix it. But I had to live with it we had to live with we had to love with it. And you talk your program is about love. Love is so critical, absolutely critical to how you deal with a person who's struggling as you're struggling. In many ways. We both thought that maybe life was over. And maybe I'm talking too much. But the first thing I wrote very first thing I wrote. I'm on hospice, I'm on her deathbed. My family's all around me, because I thought our lives were over. And and they asked me some question. And I'm not really sure what I'm saying. And this is all fictional. It's just in my mind. And all of a sudden I see a stage floating overhead. And I say, Well, maybe that's it. And all of a sudden, I decided I can write about it in fiction is not in reality. So I took the stage and I took Thornton Wilder's play our town, and I created myself as George. And I created Jean, Alice's Emily. So almost everything that was written originally was written for fictional characters. And the psychiatrist or the therapist was really the stage manager out of our town, never dreamed it, never thought I would do that. And all of a sudden, it becomes the vehicle. And you have to find a vehicle, that how you live with it, and how you make it work. And it evolved. And maybe a little later, as we talk, I'll tell a story because one of the things that scares the hell out of me Excuse my language, is that the stigma that no one wants to talk about it. No one wants to talk about it. So we say oh, she's just forgetting, oh, she didn't remember. And we kind of put it off and we put it off. And then all of a sudden, you realize it's more than that. I can't fix it. And I'll come back to the stigma question in a moment. But I'm gonna rattled on for a while, but I just think those are critical, critical issues.

Max Sherman:

Right? No, and that's exactly why I made my mom in the girl because I was there was. I mean, and I think also there's the stigma comes from misunderstanding and a lack of education, and a lot and that lack of education comes from ageism, and because people don't want to look at it, and it frightens them. And so it's easier to just to compartmentalize it and say, well, they don't remember. So that's it, you know, I mean, I talked about my brother when Mama was first diagnosed, and you know, he would say, I'd say, why don't you come and see her more often what she doesn't remember, you know? Well, I'm sure you understand how silly that is, you know, it's like, yeah, and it's, they they do remember, they remember here, and so, it's very important for them to have that support. But but it's also so misunderstood. You know, it's just looked at in such a surface way. And so that it's easy to dismiss and it's also I you know, and I understand that it is difficult for people to face it. Some people aren't strong enough, I guess right. Now give

Unknown:

you an example if I may, because it's a different area they were talking about, but it was my wake. It was what helped me to work through it. I was asked to moderate a panel between Bill and Judith more years in there. nerves are set and cope. And it was at the LBJ Library here in Austin, at the LBJ School in LBJ Library. And we had 1000 people in the audience. And they were in there that evening, the issue was to talk about addiction. And how people become addicted because Coke, Moyers and becoming addicted, almost died in Harlem in a crack house. And he's written books about it. It was all their own the point of stigma. Judith Moyers told a story that night, that was a wake up call for me. When she talked about breast cancer. She said for many, many years, no one would talk about breast cancer. And all of a sudden, people did. Eddie Ford, Gerald Ford's wife talked about having breast cancer. Judith Moyers talked about having breast cancer. So what happens today, we have six granddaughters, no grandsons, all granddaughters. We have one more in the hopper right now, a great grand coming. Another girl have all these girls. What did those young girls do to whoever may have just finished college last year, they come out and put fundraisers on, they put on their pink sweaters, they pink shirts, and they have a month, and they dedicated to raising money for breast cancer. And there was not there was a time when no one would talk about it. If you can get if you can get it out of the closet and get it out there, then I believe it's going to be up here. I think I commend what you guys are doing and been doing it for 25 years, get it out of the closet, talk about it. And you're gonna help find ways eventually to deal with it for the caregiver, and also for the person needing the care.

Max Sherman:

Definitely, definitely. Yeah, I mean, that's, that's what we aim to do. And I think there's a lot of us now than there ever was before. You know, I know, my mom had Alzheimer's for 16 years. And when I first you know, heard of it, I was I had preconceived ideas and stereotype, you know about it. And I thought, Oh, my God, my, my, I thought I had to protect my mom, they people would not be understanding. And, you know, I, I learned, it took me a little while but I learned that people you know, when you when you educate people, they're much more they there. They are understanding they can be understanding and more than you think that they are or would ever be. And so that was very, that was enlightening and also reconfirming for me to find out how many people were actually much more empathetic and compassionate than I thought that they would be. And I think, you know, so it really showed me that if you educate people give them opportunity to to step up, they will.

Unknown:

I think it may be in in the book. But one of the another wake up call for me is that when Jean Alice was first down there, I was told to follow in I'm a lawyer, I've given a lot of advice to people that they didn't follow. And then they got in trouble. And then they really needed me and I made a lot more money. But because they didn't follow professional advice. So when I was advised not to see Jean Alice when she went down to memory care. So for three months, I did not see her three months. In later when COVID comes along, we go six months without seeing each other six months. It's one hell of a life to have to live through. That on the first go round. I called every morning at 10am Every evening and 6am what I was told what happened happened, oh, Max, Max, Max, you got to come and get me I shouldn't be here, I should be with you. I have to get my clothes packed. I couldn't be with you. And there's a story in there by a judge who had with his mother, she wanted to be birth. So you have to learn to let it happen and let her realize that that is her home. We still are there every moment in love and spirit. But you have to learn that, that that's where she is. But when I used to go down there were three women who said in wheelchairs. And they always had their heads down. And you thought well, they're, they're not incompetent, or they're sleeping or whatever. And we had a little Shih Tzu dog. And so the church organist in our church got her to go down and play the piano with him one time when she was much earlier stages. And so they're playing the piano to have them sitting side by side in the activities room. And I'm sitting by one of those women who never raised her head. I've never seen an eraser head. Do you not know when she can raise her head? And I'm holding this little black lemon pounds hits the dog in my arms. And all of a sudden, someone is petting the dog. There's a hand petting the dog, and I'm scared to death, no idea what's going on. And it's that woman who did not raise her head, how she knew that dog was there, I do not know. But there's something going on in the mind of all those people that we do not understand. And I think if you can allow yourself to experience the mystery, of not knowing, because we're people who want to fix things, but if you can allow yourself to experience it, let them pet the dog, all of a sudden, they pet the dog, all of a sudden, the music comes on and they pop up in the head comes up, they heard music, they didn't know. Or if they like visuals, when maybe they see a picture they didn't know. So be open to the possibilities, I just think it's critical aspects that I've learned is to be open to the possibilities of the unknown.

Max Sherman:

Right? Right. That's great. That's such great advice. How did you find, you know, how did you personally find your strength during during all of this, like resilience, because, you know, it can be really just debilitating at times, you know, when, you know, the disease can manifest in different ways. And as much as we love the person that we're trying to understand, but you know, there's agitation, there's these kinds of, you know, even just simply like not recognizing you for a second or not, you know, I remember my mother saying, when, when I had her when she was living with me, and my daughters were there, and she said, Oh, I'm, I'm sorry, you have friends over, I won't bother you. I was like, Mom, these are your granddaughters. You know, for that moment, she didn't see them as granddaughters. She saw them as my friends. And so those are things right, that you have to figure out. How do we start breaking? It is? How did? How did you find your strength?

Unknown:

Well, you know, the way that the way that releasing the butterfly starts, is that we're sitting there watching television, and when we've had a glass of wine, and we've just had a good evening, and all of a sudden she looks over at me and says, What are you doing here, you shouldn't be here, you're not my husband. And she just exploded and starts rushing to the door. And, and I started to have socks on. That's when I shattered the femur and had to go to the hospital. And there were a number of we were in a favorite place of ours in Montana. And we rushed out to see the birds fly. And all of a sudden, she looks at me and says, Who are you? What are you doing here? So those are moments that would crush you. Unless you need no. And I think it's the great thing about your program. Love conquers. And I think if you realize and you reach out with love, because, you know, in the next moment, she says, Would you hug me? Would you give me a kiss? And it's not? It's not the end of the world? It's

Don Priess:

a moment. It's a moment that Yeah, and you just have to know it will pass. And there'll be more, but you can't let it define your relationship or who they are defined.

Max Sherman:

Or defined the person. Right? Yeah. You know, because I remember telling my mom later, when she was, you know, out of the agitation saying, Mommy, you know, that hurts the girl's feelings. What did I say? I tell her Oh, I would never say that. And she would cry. Make it it made her very, very upset. So number one, note to self never tell mom again when she did something because that was hurtful. She can't help it. Right. And so yeah,

Unknown:

I think that's an excellent point. Because I think we all owe you remember, so and so? Or, Oh, you haven't seen this or why? You don't? You just live in the moment. And you realize that in my judge friend, he wrote the deal. I learned the value of the little white lie. You know, when I was talking to her on the phone, and she wants me, you gotta come pick me up. I said, Well, you know, I'm still in rehab. I mean, I've got to get my leg fixed. So I've got a doctor's appointment. I didn't have it was a lie. And then I have another friend who came in this is not didn't make it into the book, but she always her husband was in dimension Alzheimer's for eight or 10 years. She would come in every week and get his clothes and get them cleaned and pressed and everything. And one day she brought them in, but I'm not wearing those anymore. Those are not my clothes and she was just stunned. And all of a sudden the light flicked in her mind. And she says, Well, let me get some more she walks out in the hall, waits for about two minutes or three brings the same clothes in. And he hugs her and kisses. And it's okay. So you begin to realize that this moment may be hell. And the next moment may be resurrection. And so I think he just want to keep those things in mind as you work through it, because and then there may be a moment where it doesn't recover, as he thought it would have been recovering. As you may recall, in the book, we have talks him we're having a good visits, and we have breakfast, and we have meals, and they go on and all of a sudden, begins to deteriorate, it's not going to be a long meal. And all of a sudden, instead of a 45 minute meal, you know, it's gonna be five minutes, and you better call helper to come and take her back to memory care. And so it evolves, both negatively and positively. And I think on the positive side is what we're having right now. We meet every morning and every afternoon, twice a day. And some moments aren't as good as others. You don't want to expect today, what you had yesterday. And I think it takes for the caregiver, it takes the ability to let go. And just just to let go and expect the impossible. And, you know, whenever the curtain comes down, it's down. And that's okay. And that's where it will be. But I think up until then you say the curtain may come up tomorrow, it may rain tomorrow, the butterfly fly may fly tomorrow. And so hold open the possibility. Right,

Max Sherman:

right. And

Don Priess:

that's so and that's so healthy for not only them, but for the caregiver, it takes out that insanity, which you feel like sometimes you're in it normal, it's like it's taking away all expectations of what should be of what's going to come next what makes sense, taking all of that out of the equation. And that takes away. So all of that confusion that call that the caregiver, and frustrated frustration, and therefore in that and that and your attitude. Now, they can sense that they can sense when you're upset or agitated. And so it's a win win for everybody. Yeah,

Unknown:

I had to make a little talk recently. And I can't do it from memory too well, but a very good friend of mine. He's president of a small liberal arts university college, university. And his father was was a oilfield worker, not a writer. And he read the book. And he determined that, that head of that his mother had a right for a variety of Alzheimer's. And he had taken care of her for years, she's now been dead for a long time. So here's his father, who has never written anything. He writes two beautiful poems that he talked about was going to the doctor and how it wasn't his experience. It was hers probably from 20 years before, when he took her there because he was putting it into a poem. And then he talks about what it is to be in that and, and so all of a sudden, he just realized that even even the caregiver who's lost a spouse lives with it after it's over, you know, so you've got to be prepared to allow for that possibility to because you may not right now, we're fortunate, we're both alive. I'm 89 and Jenny's 86. And we've been married almost 63 years. And we still are together. But when we're not, we're still together. And I think whatever your religious belief is, there's some way that that that mystery takes place, and you still have that beautiful love that held you together, keep you together will hold you together. And I think that's extremely important. Right?

Max Sherman:

Yeah. And, to Dan's point, it's like, it really is the the epitome of this bit of living Zen, because you're living in the moment. And that, you know, really, you know, on a spiritual level, that's really the highest way you can live is to live in the moment and enjoy each moment. And because that's all we have is this moment, this moment, this moment. And so, you know, and as hard as we tried to hold on to it, it's gone. It's gone, right? So we can only just keep that moment that we are in now and treasure that and because my mom is and you know, I've said this before, but my mom when I would go to visit her even in her late stages, and I'd say mommy, how are you? Today? She go, I am great. I'm alive. And the alternative sucks, right? So because she was she loved life. And she was very much in the zoo. And I thought that was such a beautiful sentiment because it is really, it's beautiful to be alive. It's a gift. And here we are the three of us and we are communicating. And you know, and this is it's this is what it is, it's now. And that's what it was with my mom. And that's how it is with you and G now is that we you go in and you just embrace it for that

Unknown:

season,

Don Priess:

you probably take the worst moment, you probably take the worst moment with your mom right now, wouldn't you? Over? Oh, yeah. Not happy? Yeah, you know, you have to realize that when you're also experiencing those horrible moments, that this is better than the alternative, you know,

Unknown:

let me share one experience because I said, we've been here now 13 years, and it's an absolutely fantastic retirement place. And so but memory care, we've had friends and people who've been there, they're no longer with us. And I think it's not only you and your mom and me and Jean Alice, but you also could be available for some of the other people there that may not have you and have me. And I think of two instances of people that I got to know because I would never have known them had done that been in the same area that my wife was. And so on two different occasions, they were both women. And I only knew them casually from being down there. And, and they had been ill. But what I remember so vividly is one of them, both of them in different ways. But similarly is that they weren't talking and they weren't, I wasn't her husband. And I would hold her hand in his I would talk she would squeeze my hand, she squeezed my hand, squeeze my hand. So even though I was a stranger in one way I was there. And I think that it's not insignificant, to be there to be there not only for your mom, and not only for me to Jean Alice, but to be there. For others who may be there may be for the caregiver, not we're talking about it because we can, there are a lot of caregivers that can't adult, and they may just need someone to hold their hand and to be there. And I think that's where ministers and priests and people of all various backgrounds who helped people is this to be there in the presence and maybe the hold the hand and feel it squeezed and say you knew something was going on because if I went and I was just jabbering, I know how to jabber and, and all of a sudden, she squeezed my hand, squeeze my hand, squeeze my hand. So I think the squeeze of the hand is is a very good symbol because it tells someone is there. There's someone there. Yeah.

Max Sherman:

Yeah. 100% Yeah, I mean, and that's, that's the that is that's the way that's the language, right? That's the language that that person was capable of. And she's telling you so much and that squeezes the hand. You know, and I would my mom would do that towards the end she would squeeze and you know, she would smile and I go I hear ya, I hear ya. I hear those words coming. I know what you think. And you know, I would try to fill in for her because she couldn't say the words so I would really pay attention and also you're so right and you know when it comes to being there for other people and I also think that it it not only serves them it serves us because there's nothing better than making you know that feeling when you're there you walk out and you realize like you just made so many people feel acknowledged and feel you know that they're alive and they are you know, you're giving them you're justifying them and it's beautiful and you you can't have a better feeling than that I'm telling you I highly recommend it. I do it i mean i Who would have thought that you could feel so good leaving you know a facility even a nursing home where there's very you know, people with high acuity but you sing songs and people are so happy and and by the way you don't have to be the best singer they'll be appreciative. That's like you know join in everybody and it's it is a beautiful thing. Really.

Don Priess:

And Max's Cat Stevens is on point let me tell you his this morning Yeah, we'll cheer up everybody so well morning is broken

Max Sherman:

is is is a old it's actually an old where does it come from the original? Do you know Max?

Unknown:

I don't really know for sure No. Okay. Because

Max Sherman:

I know it's like I think it is some it's from a it might have been from a A religious poem or something I just I know he wasn't original when

Unknown:

we're talking about the music, but in the early stages it's not as true now, although about every once in a while I try to because when I was trying to court Jean Alice when we were college students, I knew she would love to English literature and music and and so when we would meet I actually memorized Shakespeare sonnet and then the Shelley cited, you know, Shakespeare sonnet. Let me not to the marriage of true minds admit the impediments. Love is not love which alters which in alterations finds, or bends with the remover to remove all No, it is an ever fixed mark, that looks on Tempest, and remains unshaken is the start ever wondering Bard whose worst said known, although his high be taken, love alters not with his brief hours and weeks, that stretches out even to the edge of doom. But if this be era, and upon me proved, and ever read, No man ever loved, but I think that's one of the classic pieces of poetry. But what does it focus on? Love, love. And it tells you that love is so powerful. I don't think we ever realize how hope and love and peace are things that reach deeply into the soul of a human being in a way that you can't explain. It's a mystery. And I just think we don't give it enough credit.

Max Sherman:

I Amen. Amen. Amen to that. We really believe that. Wow, this, this was so fast. She's, do

Don Priess:

you want to, you know, I just want to touch on the fact that, you know, you've took everything that you have learned and experienced over the years, and you did create this amazing book, releasing the butterfly, a love affair and four acts. And I mean, I think I think you told me before we started, actually, that you, you wrote this for yourself initially. Correct? Right? It was nothing you were planning on letting the world see.

Unknown:

Yeah, it was my therapy. It was for me. And it evolved. And as people learned that I was doing it, they asked me, How are you dealing with the questions when they ask and I try to relate or maybe in answering your question. I would tell them I've written something last night about the horror of it. And you know, I don't know that. There's a chapter that I wrote in there that it was based upon a really life experience of ours. But when we were leaving Amarillo, Texas, where we had lived for many years, and our mutual friends all came together. And they had a quilt and they each had a square and the quilt and some memory of our time there. And we had the quilt and they gave it to us. And this was a true story. All really true. But I kept trying to understand what, what's going on. Yeah, I was still trying to be the lawyer and they figure it out. And so we take the quilt, and we fold it up and take it out of town, a little Volkswagen and put it in the backseat, and I reach in to get my car keys. And I don't have them. So I think well, these are very close friends. We've been here I go back in there probably for somewhere. So I go to the door, and all the lights are out. No one answered the door. No one hears the knock. There's no one there. And that was my fictional way of trying to understand where Jean Ellis was. And I thought that wouldn't be one hell of a position to be in when there's no one there. And what we're talking about here, and we've talked about the last several minutes, is it's absolutely critical to be there for someone to be there. Because in that mind, which I don't understand, I'm not a scientist. Oh, I read tons and tons of stuff, but I'll never understand it. But I think it's the the horror. And there's no one there. It says he was there for a mother and their preteen Alice, I was there for two strange women that I didn't know well except casually, but to hold the hand. And so I just think that that's something we do not want to lose.

Max Sherman:

I agree. I agree wholeheartedly. That's a beautiful metaphor that you just said because that is I mean it is the to think about knowing you forgot something but then not knowing where it is or what it is that you know, I think at some point in Alzheimer's it becomes what is what is it? Even right? And then having no one there to, to help you through that is is so frightening it you know that? I mean, I get frightened, I'm sure you have the feeling to if you forget a word, or you forget something that you know, you know. And you know I as the daughter, the genetic daughter of my mom, I think it's happening. That's it. That's all. And my daughters have to remind me, Mom, we forget every day, don't worry, we forget things every day. You know, so but you know, just imagine if you could if it was you were in that situation, I agree with you how frightening it would be to be alone? No, it would be so frightening. I agree. You're a tremendous human being will

Unknown:

read to get to know you. I've had a lot of good opportunities, or blue collar kids who grew up in a blue collar town and it had opportunities we never dreamed we would have. And this is one of them. We never dreamed we would live this long. And we never read we will be talking about this subject. And we are. And I hope that somebody benefits and says yeah, there's a way we can make this thing work.

Max Sherman:

I love it. I love it. And I love how vibrant you are and how you just, you just did a wonderful role model and your romantic to boot. And you say and you do a great guy, you know anybody's gonna do Shakespeare for me? I'm in? That's good. Of course, of course, is there any last piece of advice that you want to give the audience if they are dealing with somebody, or maybe at the beginning stages, something that you said you garbage dropped a lot of beautiful things, but anything else we didn't? You wanted to say?

Unknown:

I would just say that. I think we undervalue the value of a great big O genuine hug. Just hug me. Put your arms around me.

Max Sherman:

Yep. I'll go with that. Well, you've

Don Priess:

heard us today. I mean, yeah, you've hugged us and our whole audience, I tell you definitely. Definitely. You can just feel it. You just emanate love. And that's, you know, that's everything. Is everything. That's, that's why you know why,

Max Sherman:

Susan? That's because,

Don Priess:

well, love is powerful. Love is contagious. And love conquers all. So we thank everyone for watching, listening today. We thank our very, very special guests, Matt Sherman. Please do go look for his book, releasing the butterflies, a love affair and for x. And we'll have all that information online. like us, share us love us. Absolutely. See you next time. Subscribe. Take care. Thanks again for listening. Take care everybody.

Max Sherman:

Bye bye. Bye bye