What If Dementia Does Not Erase Personhood? With Marilyn Raichle

Welcome And Guest Introduction

SPEAKER_00 0:49

Hello everyone and welcome to today's episode of On the Spectrum with Sonia. Today we have a very special guest here to discuss dementia, caring for parents with dementia and Alzheimer's, and being and how she was able to use art to help give another understanding of Alzheimer's and how she was able to bridge the gap. She is also the author of Don't Walk Away, A Care Partner's Journey. And she's here to discuss not only her book, but what her experiences were like caring for elderly parents, a dad with dementia and Parkinson's, and a mom with Alzheimer's. So without further ado, thank you so much for being here. Well, thank you.

SPEAKER_01 1:31

It's a pleasure to be here. Really.

SPEAKER_00 1:33

So tell us a little bit about your life before you became a caregiver.

SPEAKER_01 1:37

Well, so I was raised in this family with very Scottish Calvinist connections on one side, German on the other. And um, there were five kids in the family, and I was raised to win. It was a very competitive family. My two older sisters were on the marriage track because they like boys, and I wasn't particularly interested in boys because I was young and got good grades. So I was on the career track and I was raised to win and to be incredibly progress, very, very competitive. Um, and so it was an interesting family. It was a fun family. The word love was never spoken, but we all knew that our parents loved us because that was their job. So that was and and so mother told us that when they got dementia, it was never if when we get dementia, I want you to walk away. There's nothing you can do. You won't, we won't recognize you, so just walk away and live your lives and don't sacrifice them for us. And we all thought, well, that makes sense. So that was sort of my attitude, and I was just focused on winning, and I was working in the theater, and that was fun and wonderful.

SPEAKER_00 2:43

So it's interesting you talk about, you know, growing up in with Scottish Calvinism, and you also had German ancestry. How would you describe Scottish Calvinism to people who don't know exactly what that is?

SPEAKER_01 2:57

Emotionally repressed. Every Scottish Calvinist, there's a certain thing that the Scottish Calvinists believe there's the the elect, and there's a certain number of people who are preordained to go to heaven. Every Scottish Calvinist you will ever meet is pretty sure they're among the elect, even though that's not a huge number. But they also do good works just to make sure. And so it was emotions were in it not encouraged. And so it was just and they were funny. These were wonderful people. They argued all the time. And when somebody got the upper hand, they'd switch sides just because they liked arguing so much. So it was it wasn't horrible, it were just certain ground rules that, you know, emotions were just frowned upon. There were certain rules about death. When someone died, you were not to have funerals, you were not to have to have memorial services, and you were not allowed to cry. Because everyone knew they were going to heaven, so why cry? Emotionally unavailable is an understatement.

SPEAKER_00 3:52

Aaron Powell So it seems like it was very um rule-based kind of thing, and it was very much you had to fall in line with what was the given expectations of you, and emotions or any deviations were not really necessarily allowed, quote unquote, so to speak.

SPEAKER_01 4:11

We all knew. We were raised young, and so we we all knew what the rules were, and there was never any real need to enforce them because we all knew.

SPEAKER_00 4:20

Would you say that the Scottish Calvinism held a stronger influence then in the family than the German side?

SPEAKER_01 4:26

Oh yes. Oh, yeah.

SPEAKER_00 4:27

Yeah.

SPEAKER_01 4:27

My grandparents, when mom mom started working, because with five kids, she went back to to work to help raise money to send us all to college. And so my grandparents, John and Roselle McPhee, moved back to Seattle from Yakima, where they lived, just to take care of us. And so they were a huge influence on our lives. And in fact, there was this wonderful picture. I don't know if you're familiar with the painting, American Gothic, a pitchfork. Well, we found a pitchfork. And so we have a picture of my grandparents with grandpa holding the pitchfork looking very stern, and we call it American Gothic. So they were funny. We knew the the rules and and uh and there was no drinking. So that when I went to Europe on a nine-month trip study abroad program, and I actually wrote my grandparents that I had had a taste of beer, they were scandalized. So, you know, it was it was an interesting, interesting upbringing.

SPEAKER_00 5:28

So on your nine-month trip to Europe, though, did you by chance get to go to Scotland? Oh, yeah.

SPEAKER_01 5:36

Well, I didn't go to where they grew up because they grew up, the McPhees sided with every losing side in every war, so that they kept their they finally moved to this remote island off the s coast of Glasgow called Collinsay. And it's really hard to get to. Even now, there's only one ferry that goes like three times a week. There are not like a lot of places to stay. So I've never been there, but I spent a lot of time in Scotland, which was fun. It must have been a culture shock. No, by then I was aware. By then it was like, okay, I get it.

Finding Freedom Through Theater

SPEAKER_00 6:14

No, but like seeing how you grew up to seeing how people actually live in Scotland, that must have been kind of a shock in that sense.

SPEAKER_01 6:21

Well, they were m I mean, most people in Scotland aren't Calvinists, so it was, you know, they were fun and happy.

SPEAKER_00 6:28

So you so you grow up in an where emotions were not allowed, and then you know, you talked about going into theater where emotions are rampant in theater, right? You're gonna need that in order to put on a good show or produce or, you know, act. So tell me about that journey of how you went from growing up in the household you did into going into the arts.

SPEAKER_01 6:54

Well, I think the arts were sort of a wonderful escape, and they were a way to express the emotions that I wasn't able to express any other way. But here's an example. When I was nine years old, and I'm the fourth of a family and four kids, five kids, and dad would come home from work and he hated his job, so he would always be in a horrible mood. So he'd come home and we'd all flee to our safe spaces because he would yell. And so one day I went to the hall closet. I'm nine years old. I went to the hall closet, and when he opened the door, I fell out as if I had hung myself. He didn't know what to do. He was completely disarmed, but he didn't yell. He just went down to his workshop and waited till dinner, and we were all safe. I did this for two years. The whole family would sometimes line up at outside the the door of the hall closet to watch me fall out. That that was sort of, I think, my beginning in the theater, that it was a safe space. It was and it was fun. And so when I started, uh I was in high school and I enrolled in a drama class and I was so frightened by it because it wanted me to express emotions in a way that I wasn't familiar with or wasn't comfortable with. So I switched and went into debate. I was much more comfortable in debate. Um and so, but that that excitement with the theater was always there. Graduated from college, I went to New York and by chance got a job working for a Broadway producer. So I could see anything on Broadway free. All I had to do was to call up any theater and say, I'm calling from David Merrick's office, may I have house seats? And they would say quite certainly. So for three years, I saw everything on Broadway. It was so much fun. And so when I came back to Seattle, I had this opportunity to run a small theater. And that got me hooked again. And so I was running and producing plays, and it was incredibly creative and fun. Um, I was always also making costumes. And so that was just this. And then I switched from producing plays to I I founded the Seattle International Children's Festival, which was this wonderful event which introduced kids to the per to world culture through the performing arts. So every year with this wonderful woman named Marjorie who ran the Vancouver Children's Festival, we would travel all over the world looking for acts to bring in. And so I didn't and I did that for 10 years. And it was just wonderful. One weekend, thousand kids at the festival. It was just wonderful. Then I did that for ten years, and then I thought I needed to do something new. So I I formed a comedy festival. And that was difficult because it turns out most people thought that a comedy festival would feature bad stand-up comedians. So I sort of adapted it and changed the name to American Voices, which was focused on good humored understandings of American culture. And that I did for like several years, many years, and that was fun. So I was always coming up with things to do that sort of satisf satisfied my creative needs and impulses.

SPEAKER_00 10:05

What would be one production that you've done where you just let out things and emotions, just let everything out and at the same time got educated about yourself? Like you didn't realize that you were holding this much back.

SPEAKER_01 10:22

Well, I don't think that I ever realized how much I was holding back because that didn't come until I started working with mom. But one production, I mean, they were all wonderful, but one production that I loved was called Ming the Root. It was about Larry Ming and this sort of nerd, and he was working with the son of a king. And so it was just this wonderful story. It was a musical, and all of these incredibly talented people who became my best friends were all in it. And it was just fabulous. It was I have a recording of it and I laugh every time I see it. It's just fabulous. And there were there were two sequels. One was Ming Strikes Back, and one that was the I can't remember the name of the third one, but it was just, it was so much fun. Loved the theater. Enabled me, it didn't enable me to express verbally all the stuff that I was holding back, but it enabled me to enjoy the world in ways that I hadn't allowed myself to before. Unless I was in the theater. So it was just glorious. It was fun.

Becoming The Family Caregiver

SPEAKER_00 11:25

So you found a lot of it was very cathartic for you to be able to produce things, to produce shows, to make the costumes. It seems like those were like your kind of safe haven places of letting it out. Yeah. And now, you know, transitioning gears here. You know, you said that you didn't realize how much you were holding back until you started taking care of your mom. So tell me how, you know, you went from being very busy in theater and putting on, you know, festivals and putting on different various shows. How did it come to be then that your role started to sweat?

Grief After Dad’s Death

A Painting Class Changes Everything

SPEAKER_01 12:01

Well, and that was the the last thing I wanted to do since we were all raised with walk away. That's what we thought. And I had gone to graduate school thinking I could take something to the next level. I planned on continuing to work in the theater. And when I got back, my parents had both started to develop dementia earlier. And when I got back, they had progressed a lot. And so, and there were no jobs because it was during the recession. My family said, okay, my brothers and sisters said, Okay, we're going to keep you afloat and you're going to become the family caregiver. Well, I didn't really have a choice because there were no jobs. You have no idea how much I did not want to do that, and you have no idea how ill-prepared I was to do that, because we regarded dementia and Alzheimer's as like a death, actually worse than death, that this was not something we wanted to do. Most of my father's older brothers and sisters had developed it. My grandmother on my mom's side had developed it. And it was just something that we didn't want to think about. And so when I became quote, and I want to say right at the outset that there's a difference between what I was and a home caregiver. Home caregivers have the toughest job on the planet, and they're operating without a net. They're, for the most part, juggling family and jobs and their their loved one who was living with dementia, and they're overwhelmed, and most of them have no help. And I think the biggest, the biggest threat to home caregivers is their own health because they don't take care of themselves, and we as a society don't take care of them. And so I had it easy. I where mom was living in this great continuing care facility, they had moved into assisted living. And they were t the organization that the home was taking care of most of their care. I was there to take make sure they were engaged, that I took them to doctor's appointments, and that it was it was a job because I looked at the clock with mother's words walk away, always in the back of my mind. But that was my job. So I did the best I could, which was not good. And when but we I slowly, after about a year, sort of calmed down, started listening and reminding myself that they were my parents and I did love them. And mom wanted the best for dad, dad wanted the best for mom, and I wanted the best for them. So we sort of came to this place of shared goals. And that's sort of how we lived for the first year, year and a half when I was mom's, I'm gonna say, caregiver. And then after about a year and a half, dad died, and he was 89. And we were all in the room with him, my two brothers, my brother and my sister and I, and mom, and mom was asleep. And we thought, should we wake her up? Because she's not gonna remember this and she's gonna have to live through this every single day. But we thought we have to wake her up. They'd been together for 72 years. They were best friends for 72 years. And so we woke her up, and there was a rule in our family that when someone died, you were not supposed to cry. I've never seen tears like that in my life. I've never seen mom cry. I've never seen tears like that. It was just heartrending. After a very long time, we got her back to sleep, and I got there early the next day because I thought, okay, I just have to make sure she's okay. And when I got there, she remembered and we talked about dad and what a wonderful life they had. And the second morning I got there early and she remembered and we talked about dad, what a wonderful life they had. And the third morning I got there and she was crying, and she said, I just want to be with your father. And I, without thinking, summoned the mother of my youth, and I said, Well, mom, you should have thought of that before you started taking such good care of yourself. And she laughed and she said, Well, that's life. And from then on, she put it in a box. I thought she forgot, but she didn't. It was always there. She would say, Oh, Bob, about 40 times a day. And it was her love for dad was so strong that she decided to rejoin the world. So she made friends immediately and she started doing all sorts of wonderful things. And because she was bored to death because dad wasn't there, I took her to this painting class for people living with memory loss. And she didn't expect anything because she thought painting was stupid. And I didn't expect anything. So I was shocked when I saw her first painting, which was fabulous. Just fabulous. That must have been very eye-opening all around to witness. Because if like most people in this country, and like maybe everywhere, we thought of of somebody who was living with dementia as no longer there. And when I saw Mother's painting, I thought, oh, I see, she's still living with wit and invention and and and fun and imagination. That changed my understanding. And it was very fast at that point. I realized that mom was still there. And I let go of the person I thought she used to be. And I embraced the woman who was with me in the moment, which made all the difference. I understood, because I was working in the field at this point, that people would use a terminology I hadn't heard before, which people living with dementia are living with dementia. They're not suffering from, they're living. They're living just like we are. And that began my journey with mom.

SPEAKER_00 17:35

When you look at dementia as it's something you live with versus something you are constantly battling, it makes that difference because it changes it from okay, I'm going to work with something that's an uphill battle because I'm battling versus I'm just living with it. And so let's find ways to coexist.

Building The Art Of Alzheimer’s

SPEAKER_01 17:55

Well, it's even more, it's even stronger than that because living with is a person, person who is living. And before it was like we weren't seeing them as people. We were seeing them as gone, as they're going away, that they they're not thinking, but they're just suffering, these poor people who are suffering. One of my sisters said to me once, Mom left us years ago. To which I said, Well, if she left, who's there? And I suggested someone worth getting to know. That that it's hard for people to think of people living with dementia as human beings who have something. A friend of mine came up with this wonderful term, human beings with gifts to give and lives to live. Yeah. So that that began my my journey with mom. But unfortunately, I must admit, for the first year and a half, always came in like year and a half increments, I had decided I would start a new business called the Art of Alzheimer's, which was a great thing. Whenever I would show mother's art to people, their reaction was almost always the same, which was, I had no idea. And so I kept showing that and then I I would do uh I did an art exhibit once featuring it was like 40 pieces of art by by all these people aged 60 to 102. Um and it was just magnificent. It was called the artist within. And again, art is used to came I came up with this term called Alzheimer's is scary and art isn't. So that if you start with the art or something wonderful and happy, people their fear, you sidestep it. And then once they enjoy something like that, then they can talk about dementia. Then they can, you know, talk about what the issues are, but only after you disarmed all their fear. So the art for me was just was this wonderful new career. And I will admit that for the first year and a half, I thought more about the art than I did about Maul. I would get there every Tuesday, which was painting day, and I would make sure I took her artwork home because otherwise she'd throw it away. And then I would start to amplify its impact. And it was only after about that year and a half when I started to notice that mother's artwork to me looked like it was deteriorating. Same lines, same scratchy lines, same colors, same images. And I thought, well, she's losing interest. So I got there early before painting class, and we did everything she liked to do. We looked at the view, we took a walk, we played Scrabble, which she we did every day until she died, and she played the piano. And then I took her to the painting class, and her painting completely changed. All these warm animal images appeared and different colors. And that's when I had my breakthrough. That was when I read, I get it. I have something to do with this. I have a role to play. We're partners. Then on for the next nine years, we worked together as partners, building the best possible life for both of us. And that changed my life and it enabled me to understand more fully what it means to be a person who is living with dementia.

SPEAKER_00 21:14

So it was just, so it's like kind of like you you learn through each step that, you know, what works, what's not working, things that maybe certain things needed to change up. Maybe, you know, that there's certain things that are routine or maybe adding, you know, what you can add to.

SPEAKER_01 21:33

And I didn't, I wasn't thinking at this point because I was thinking about me and my new career. It was the the changes I I experienced were always thrust upon me. I wasn't looking for them. But once I made this transition into being mom's care partner, that's when I began to lead a purposeful life where I was, in fact, looking for ways to be a better human being. And mother taught me, taught me every step of the way. She was, you know, you hear that that trope about I became the mother, she became the child. No, mother, mother was always my mother. She was always teaching me something. And it was, it was the most magnificent experience of my life. Every day I learned something new. And the first thing I learned, the very first, one of the very first things I learned was that I just assumed that mother was happy to see me because I, for all, I'm her daughter. Of course she's happy to see me. But then I realized that she was far more engaged with the people who were her neighbors, that she had a new family, and that I was so lucky because they were willing to accept me as a member of their family. So I had a whole new family with all these wonderful new mothers. And they, as much as mom, Taught me every single day something wonderful about the people who live with dementia and how to live a life. It was it was a s I'm a much nicer person now than I used to be.

Lessons That Make Care More Human

SPEAKER_00 23:03

So what would you say are some of the biggest lessons and key takeaways that you learned from caregiving?

SPEAKER_01 23:13

Well, I would say number one, that I learned that it wasn't about me. It wasn't about how I would feel if I had dementia. It's how mom felt. She was the important one. And so I stopped looking at things from the point of view of that that's where you get away from the sadness and the sorrow. I learned to listen. I learned to ask questions. I learned listening was hard for me because I was, I was raised to wins. Listening was hard. Listening was sort of waiting for someone to make mistakes so you could swoop in and, you know, and win. I would learn, this is one that that does, it is hard. I learned to share joy. With mother, I think one of the most key things was that there's this thing that, you know, mother left us years ago. Someone's just leaving us. They're they're going away. And I talked to this guy once, and he was telling me about his wife and who was living with dementia. And he said, and she was living in a nursing home. And he said, When I see her, she kisses me. And she tells me she loves me. And when I look in her eyes, there's nothing there. And I leave in tears. And I thought, why is it that he couldn't see what I most likely would have, which is a woman with something to say? And I think that if your entire framework is just sorrow and loss, this is all so sad. That's all you'll see. That's all you'll be able to see. But as soon as you can share joy, so if you can find something that you both enjoy doing, or certainly that she enjoys doing, with mother, it was practically everything. With mother, it was taking a walk, and mother was looking at the sunset, was playing the piano. Everything to mom was just delightful. And but when you can see somebody that you think is gone taking part in some activity that brings them happiness, then you can see that person that you thought was gone emerge. And so to share joy is to share an experience where she is having fun and you were having fun, and you would want to do that again. It changed me because before, when I saw mom, I saw when I heard mom, I wasn't hearing the thought, I was hearing the confusion. But that all changed. So with mom, we shared so many fun things. And I just saw this experience, the mother I always knew or didn't know, or wanted to know, this wonderful person who was very funny, who was incredibly competitive, incredibly funny, needed friends, loved to laugh, very curious. She remained all those things, distilled, I used to say, distilled to her essence. Different, changed, but still essentially intact. And so with mom, I learned that she was still there, that we shared joy so we could experience that life. She was living, not suffering. And I asked questions and I listened to the response. And I think that's the most important thing you can do is to listen. Because when they're talking to you, they have something to say. And you really need to listen and not just toss it aside. For years, mother asked one question over and over and over. She asked me, What did I think Seattle was going to be like in 50 years? Sometimes she changed the time frame to 250 years or 500 years. I at the beginning, I would just come up with some glib answer and then change the subject. And then finally, years later, I realized that if she keeps asking, it matters to her. So I finally asked her, I said, Well, what do you think Seattle's going to be like in 15 years? The floodgates open, and she'd come up with all these things. She said, Well, maybe we'll all fly. It's going to be so crowded, there won't be any room. And she would always end with, and maybe women will wear skirts again. Because her grandmother, she always said, My grandmother would be so appalled that women aren't wearing skirts. Well, mother didn't wear skirts, but that was still she thought that women should be wearing skirts. And so it was just, again, it was fun. Everything was fun. With mom, I I when I visited every day, we had a routine. I would get there before lunch and I would give all the ladies, I called them the ladies of assisted living, were sitting at the table, the women's table. And I would give them all shoulder massages. I would always ask first. And some of them wouldn't know what a shoulder massage was, but then they'd see the person next to them going, This is so wonderful. And then they would want one. And touch is important because so many people living with dementia aren't receiving touch. So I would be giving people massages, and one day I got the best compliment of my entire life from Gloria. She came up to me and she said, Do you tuck your wings in a handkerchief when you're not here? Every day was happy. Every day was an opportunity to express and receive love. This was not a world I was used to. When I would tell people that I would go to assisted living to see mom to relax, they would look at me like I was insane. And yes, in mom's world, there were no deadlines. All there was was the opportunity to express joy, express happiness, to be with each other. And who wouldn't want to do that? So it was not something that I had to do anymore. It became something I needed to do. And instead of going there intermittently, I was there every single day because this was my new life. And every day I learned something new about how to be a human being and how to enjoy the world. I finally understood the concept of enduring personhood, that there are certain things, many things, that all people share, whether you have dementia or whether you don't, until the day you die, the need for friendship and the need for community, the need to be a value, the need to laugh, the need to love and to be loved. None of that will ever leave us, that need. And here with all these women experiencing the world, seeing it differently, but all experiencing the same reality, really. They're seeing this, I'm seeing this, I experience it differently, but we're seeing the same thing. We're human beings, all of us. And that changed my understanding of people living with dementia. But I also realized that everything that brings joy and happiness to people who are living with dementia works the same with everyone everywhere.

Writing The Book Through Mom’s Paintings

SPEAKER_00 29:50

It seems like you found a bigger purpose outside yourself. And it seemed like in embarking in this journey, you learned that first and foremost, right, when you look at a person who has Alzheimer's or dementia, first and foremost, you recognize it's a person. Right. And the label behind them is not what's driving necessarily the bus, but rather they're learning to live with it and understanding that you are dealing with the person first and foremost and treating them with the human decency, respect, and helping them find joy in their life comes first and foremost. You know, instead of just focusing on dementia or Alzheimer's, just instead of focusing so much on the labels and making it be so that it's just a dead end. Yeah. And understanding that there's still life left and to celebrate the life that is left.

Cost Barriers And Caregiver Support Gaps

Where To Find The Book

SPEAKER_01 30:46

That's right. When I wrote my book, it was to really take people on a journey with me and mom so they could live that and understand that. I actually wrote down every single thing mom and I didn't said for nine years. The the the book is really a collection of my journey through these stories, but also each one illustrated by one of mom's paintings, which were extraordinary. Her paintings were just amazing. The first couple of years, when she saw a flower, she painted a flower. And then she started to transform things so that she saw a butternut squash and she painted this odd little creature in orange that had a face that looked exactly like a blue meanie from Yellow Submarine. I call it the orange meanie. It's my favorite painting. But everything was was was incredible. And I was always curious as to what she was thinking. The only painting where I didn't have to guess was her painting of strawberries, because we went strawberry picking every single summer. And mother made, you know, pounds and pounds of jam. So when she painted a strawberry, there was a strawberry. She knew that one. But it was just, it was such an adventure. And and she changed me because when I realized, I mean, she in our family you didn't accept a p a compliment. Because if you accepted a compliment, it meant that you thought you deserved it. So we learned very early that if someone gave you a compliment, you should change the subject, preferably to something depressing. And then after a while, people stopped complimenting because they didn't want to hear something depressing. But mother, when she started a conversation, she started with a smile and a compliment. Years later, I started to do that myself, and it was like, oh, what a wonderful way to start a conversation. Of course that's how you should do it. And so I learned from her every day. I learned something. And I learned something from all her companions. They gave me the opportunity to share love. Years and years and years ago, before mom developed dementia. She lived, I lived not far from where the continuing care facility where she lived. And she came by my house one day. There was I shared it with people, so she got in, went up to my room, and she laid down next to me and she told me she loved me. Bear in mind I'd never heard her say that. And all I remember is crying. And she then said, I guess I should have said that more often. And I still didn't say anything. And our our life together as care partners unlocked all that love that had been waiting so long to express itself. So it's different for everyone. And when I was telling my story to a woman who was a home caregiver for her husband, and she said, Well, and I was telling her that it was a story of joy and hope. And she said, Well, I have a hard time with joy because my journey, it's hard being a home care giver, but I can totally embrace the hope. And which is why I always make sure people know I'm not saying I'm a home care giver, because it's hard. Um and but it was it was extraordinary, happy. The day mom died, two days later, I went back to assisted living just to be there. And two of the the women that were really good friends, uh Ruby, who was from Atlanta, had this delicious southern accent, and Evelyn, and they were talking about mom. And Ruby held up this red plastic flower, and she said, I think about Jean every time I see this. You want to know why? And I said, Why? She said, 'cause she tried to eat it, and I was I was home. I was I was home and I was happy. It was just, and then COVID came and I couldn't visit anyone, which was really too bad. But it was those women were just amazing, all of them. The whole experience was was glorious. And most people in this country have a lot of roadblocks. One is that it's hard for them to think of dementia as having hope. Home caregivers are given almost no support for operating without a net. Senior living facilities that are good and engaging are so egregiously expensive. I mean, up to$16,000 a month and more, and no one has that kind of money. And that that we are doing a terrible job at supporting people who are living with dementia and their care partners. So it's my goal to change that.

SPEAKER_00 35:13

Marilyn, where can people find you and find your book?

SPEAKER_01 35:18

Well, they can go right now, they can go to um we just found out it's going to be featured, starting to be featured on Barrington Noble, which is great, because right now it's on Amazon. And if they go to the website for the book, which is don'twalkaway.net, there'll be information about mom, about me, and there'll be a link to purchase the book. Or they can go to Amazon. But the trick with Amazon is turns out there are a lot of books called Don't Walk Away. Who knew? And so you actually have to put in Don't Walk Away, a care partner's journey. It's easier just to go to the website, click on the link to buy the book. And and I can be reached at Mauds Awards, which is where I currently work, Marilyn at modsawards.org. And that's Maud M-A-U-D-E-S Mods Awards. That's an organization, you know, has its own wonderful, fabulous story. And so my whole life now is in the world of dementia care. Um and it's it's not the the old days of the theater. But when you spend time, I always tell people if they're really looking for something interesting and engaging, they can adopt a mother in assisted living. But you just have to go there. You have to make sure you're you're consistent because these women just will change your life. They just will make you realize that they're still here.

Person First Language And Closing Thoughts

SPEAKER_00 36:34

Marilyn, thank you so much for sharing your story and sharing your journey with us. You know, this was very eye-opening all around. And I feel like many people will find this very cathartic, as many people have aging parents or grandparents and where Alzheimer's and dementia are getting more and more diagnosed. And um I think many people will find this very therapeutic for them, you know, and how to cope things in their own lives. And I think that, you know, the work you're doing is absolutely amazing. And thank you so much for all that you're doing. And definitely, you know, you wanting to make the changes and what's already existing to make things better, you know, is so needed.

SPEAKER_01 37:23

Yeah, I think that if people, as long as most people think that people living with dementia have no value, have no future, are not worth it, that we're not going to change things. We're not gonna change the availability of of good care for people living with dementia. And so the more we realize that they're still here, that these are great human beings, the better we'll all be.

SPEAKER_00 37:44

Absolutely. No human being is worthless or no human being is useless. I've always believed that all human beings have something to offer. And all human beings, there's everybody has worth just by simply being alive, by being here. It's a God-given right, I believe, that we're all made with worth. So I think that, you know, the more we understand that first and foremost we need to start looking at people as people before a label. That's where real change gets made. Because I think too often this goes even beyond Alzheimer's and dementia. Anytime anybody has a label, a diagnosis, right, we call them, oh, that bipolar person or that diabetic person or that cancer patient. What about saying their name? And instead of saying that cancer patient, this person who has cancer, this person who has bipolar, what we call people first language.

SPEAKER_01 38:40

Yeah. And as long as we're ruled by fear rather than acceptance and understanding that they're here. These are people, unless instead of being afraid of, oh, I might get that. I have one sister who says, I'm never gonna get Alzheimer's. I said, Well, that's great. Congratulations. Sort of like that's not the point. But but um it's it was a wonderful, wonderful journey. Best thing I've ever done.

SPEAKER_00 39:06

Well, I'm very happy for you that you found that like a new direction and a new purpose in life that feeds your soul. Yeah. A lot of people go their whole lives looking for something that feeds their soul. And I'm so happy that you found something that truly fills you up.

SPEAKER_01 39:22

Thanks. I am too. Thanks tomorrow.

SPEAKER_00 39:25

Yes. Well, Marilyn, thank you so much for being here. You know, thank you for sharing your journey. And for all who listened today, thank you so much for tuning in. Remember to rate, subscribe, and review. All of Marilyn's information is going to be in the show notes. And until next time, take care. And thanks for tuning in.