Art, Memory, And The Power Of Care;

What if Alzheimer’s didn’t close a life, but opened a new way to see it? That’s the question at the heart of our conversation with author and advocate Marilyn Raichle, whose book “Don’t Walk Away: A Care Partner’s Journey” chronicles how a reluctant daughter discovered joy, humor, and dignity alongside her mother living with dementia. We move from fear to curiosity as Marilyn shares the moment a simple painting class changed everything—the hum of focus, the pull of community, and the art that silenced stigma with beauty.

Together we explore how language shapes care. Saying “living with dementia” invites partnership; saying “suffering from” reduces people to symptoms. Marilyn breaks down the practical shifts that follow: stop asking “Do you remember?” start asking open questions; measure success by connection, not recall; design small rituals—walks, music, Scrabble—that build attention and trust. Her mother’s creativity becomes a north star, showing that purpose and pleasure can bloom even as memory fades. The result is a human, hopeful roadmap families can use right away.

We also zoom out to the systems level. Marilyn’s exhibits for The Art of Alzheimer’s drew thousands and sparked the most powerful response of all: “I had no idea.” That spark fuels her work with Maud’s Awards, which fund innovative Alzheimer’s care and publish free handbooks so anyone can adopt ideas that work. From drumming circles to intergenerational programs, these solutions prove that when we see value, we invest—and when we invest, people thrive.

If you’re a caregiver, a health professional, or simply someone who wants to show up better for others, this episode offers tools you can use today: smile first, ask before telling, create low-barrier choices, and protect dignity at every turn. Subscribe, share this with someone who needs hope, and leave a quick review to help more listeners find stories that change the way we care. What small ritual will you try this week to spark joy for someone you love?

This podcast is a proud member of the Mayday Media Network — your go-to hub for podcast creators. Whether you’re just starting a podcast and need professional production support, or you already host a show and want to join a collaborative, supportive podcast network, visit maydaymedianetwork.com

Still Changing a World: Small Acts of Kindness That Make a Big Difference invites you to notice the quiet, everyday moments where you can change someone’s day—and maybe their life. If you’re feeling overwhelmed by outrage and noise but still believe in human connection, this book will encourage you to keep showing up with courage, compassion, and practical kindness. Grab your copy here:

Join the movement of kindness! When you shop The So Do You Collection, you’re not just getting inspiring merch—you’re helping make a difference. A portion of every purchase supports local and national nonprofits that spread kindness where it’s needed most. Explore the collection now.

“Intro music: ‘Human First’ by Mike Baker – YouTube Music: https://youtu.be/wRXqkYVarGA | Podcast: Still Here, Still Trying | Website: www.mikebakerhq.com 

Transcript

SPEAKER_01 0:22

Welcome to the Kindness Matters podcast. A show that celebrates the powerful truth that kindness can change the world. Every week I aim to finalize out people and organizations making a positive difference in their communities. Proving that compassion, empathy, and connection still thrive. Even challenging times. This podcast is about more than two stories. It's about people. If the message of this show resonates with you, please share it with your friends and family. Each share helps spread the light a little further. Because when it comes to kindness, the ripple effect is limitless.

Introducing Marilyn Raikel And Her Story

SPEAKER_02 1:44

And the fact that that you made a conscious choice to spend 30 minutes of your time, your day, with me and my guest today, is I love I love it. And thank you. I appreciate it so much. I have a fantastic show to you for you today. Especially if you are a caregiver. This is going to mean a lot, I'm sure. My guest today is Marilyn Raikel. She has devoted her life to changing how we see people living with dementia. She's the author of Don't Walk Away, A Care Partner's Journey. And it's a deeply personal story drawn from caring for both of her parents as they lived with Alzheimer's disease. And inspired by her mother Jean's late life creativity, Marilyn founded The Art of Alzheimer's to celebrate the artistry, joy, and connection still possible in dementia. She now serves as executive director of Mods Awards for Innovation in Alzheimer's Care, bringing both expertise and a heart-level belief that people are not just suffering from dementia, but truly living with it. Welcome to the show, Marilyn. I appreciate you being here.

SPEAKER_03 3:17

Thank you.

SPEAKER_02 3:18

I messed that up a little bit, but maybe I can correct it in in in production or in editing. I I so appreciate uh I have never none of my family members knockwood have have ever it doesn't run in our family, but but Alzheimer's dementia does run in your family, doesn't it?

SPEAKER_00 3:45

Yeah, yeah, yeah. It my both of my um parents, my and most of the people on my father's side developed the disease around 80, um, and very few in moms. Um so we didn't expect it with mom, but but we did with dad. And in fact, as children, we used to this is how ghoulish we were, as teenagers, we would develop ways we were going to kill him when Alzheimer's arrived. Oh my yeah.

SPEAKER_03 4:15

Dad even participated. Oh really?

SPEAKER_02 4:20

That's I I'm I'm a little surprised about that. Although, you know, I can understand that sentiment. Because as a parent or as a spouse or or what have you, you don't want to be a burden on your family, right? That's that's a big deal. And so I I can totally see being your dad, for example, and saying, Yeah, I'm down with that, as the kids would say today.

SPEAKER_03 4:49

Yeah.

SPEAKER_02 4:51

Wow. Well, you grew up hearing the message, when we get Alzheimer's, walk away. Right? Yeah.

SPEAKER_00 5:01

That was mom. Yeah, she told all five of us kids, she said, When we get Alzheimer's, I want you to walk away. There's gonna be nothing you can do. So walk away and live your life and don't sacrifice it for us. And we all thought, okay, that makes sense.

Family History And Early Attitudes Toward Dementia

SPEAKER_02 5:18

Yeah. How did that how did that shape your your initial, I mean, you kind of mentioned it there, but your initial reaction to caregiving. How did and then conversely, how did your perspective evolve over time?

SPEAKER_00 5:35

Well, I was never going to be. This was never in my plan. But when I got back from graduate school, there were no jobs. And mom and dad had started to become worse. Um, and dad was also dealing with Parkinson's, so he had his own version of dementia. And mom was getting worse. So the family said, okay, we're gonna pull our resources, we're gonna chip in, and we're gonna keep you afloat, and you're gonna be the family caregiver. And you have no idea how much I did not want to do that. I didn't know anything. I didn't want to know anything. Um, mom and dad lived in a really great continuing care facility. So it had, they had moved to assisted living by that point. And so, and I have to say it right at the outset that I was never a home caregiver. They have the toughest job on the planet, and they're operating without a net. Um and so I was incredibly lucky because Horizon House, where they lived, was taking care of most of their care. Um, and I was there to to make sure that they were engaged, to, to go to doctors' appointments and things like that. So I had a, I was not dealing, I was not like the family caregivers who are juggling jobs and kids and and their loved one. So I want to say that right at the outset. Um, but it it was hard because I didn't want to be there. And mother's words were always in the back of my mind, walk away. I always would look at the clock. I did the bare minimum. Um, and very slowly over time, I slowed down. I started to listen. I reminded myself that they were my parents. And even though the word love was never spoken when we were growing up, I did love them. And I assumed they loved me because that was their job. Um and so mom, who thought of herself as dad's caregiver because of his Parkinson's, mom, mom wanted the best for dad, dad wanted the best for mom, and I wanted the best for both of them. So basically, we sort of focused on shared needs. And so that sort of kept us, kept me going with this difficult role until dad died. And dad died at the age of 89 after I'd been doing this for about a year, maybe a year and a half. And mom, when dad died, we were all in the room with mom. Dad was in his bed dead, and my brother and I were there, and we thought, should we wake up mother? Because she's not going to remember and she's gonna have to live this through this every single day. But we had to wake her up. It was they'd been together for 72 years. And I've never, ever seen grief like that. And I've never seen Mother cry, but I've never seen grief like that ever. It was just overwhelming. And finally we got her back to sleep. And I got there early the next day, and she remembered, and we talked about dad and what a wonderful man he was. And the next morning I got there early and she remembered, talked about dad. And the third morning I got there early and she was lying in her bed crying, saying, I just want to be with your father. And without thinking, I thought of how my mother would handle it. 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, we we wanted to think that she had forgotten, but she never forgot. But she put it in a in this little box and she rejoined the world. And that sort of began the second version of my caregiving journey. Um, and that's the point I still thought of myself as a caregiver as opposed to a care partner. Um, and so that went on, and she was really bored. So I took her to this painting class for people living with dementia. And she didn't expect anything, and I didn't expect anything. And the painting she produced was fabulous. I was just amazed. And that is when things changed. Um, mother mother said she didn't paint. She said, I didn't do that. She never would acknowledge them as hers. I can't I can't tell whether that's just the Scottish Calvinist in her, where she couldn't admit to doing that because they all played instruments, mom played the piano, grandpa wrote poetry, but painting was considered an indulgence. So so that was the second the second half of my evolution.

Grief, Memory, And A Turning Point

SPEAKER_03 10:39

Wow. I that's just my mom was similar.

SPEAKER_02 10:46

She was she was a very good artist. Um but she always claimed that she was not. Take that for what it's worth. I don't know that she ever took any, but that just kind of r reminded me when you talked about your mom. Um so what what role do you think that creative expression plays um in helping people living with Alzheimer's feel seen and valued? I mean, I I don't think she would, your mom would take any credit or or the how did she take when you was the joy of doing it.

SPEAKER_00 11:24

It was the joy of doing it. And it was just also that that absolute total focus. Um when mu when they would when mother would lift the brush to start to paint, she would begin to hum. And once she started humming, I knew she was in the zone and she wasn't and I didn't go to the painting classes because I didn't want to interfere. Um so I had to take her there because otherwise she wouldn't go. But I I've always waited for the hum. And then she was totally engaged. And but I also think that the it's the mere act of doing something where you're totally engaged. And it could be painting, it could be singing, it could be anything. It could be playing Scrabble the way mom and I did. Um that it's it was that total engagement, and and it's sort of like when once somebody said, Well, how can I get somebody in involved in a creative process? And I think the first question, the first step is believe they can.

SPEAKER_03 12:30

Yeah.

SPEAKER_00 12:31

Believe they're there. And that given the opportunity, they will I mean the the when people who didn't just forget, mother would immediately forget. I had to take her paintings home, otherwise she would throw them away. Oh no. Yeah, because she thought they had no value. But but for people who valued them, it was a a great source of of satisfaction. And and so I think it's just believing in them, um, reminding yourself that they can do anything, that these are human beings, not just some poor pitiful creatures, but human beings like us.

SPEAKER_02 13:14

Did you have any inkling when you signed her up for this painting class that she might be good at it or enjoy it?

SPEAKER_00 13:22

Oh no. No, and no, and mother didn't know. It was just something to do to keep her engaged. And yeah, it was just something to keep her busy. And but then the painting was made. And what was interesting is that when I would show the paintings to people, because they were the paintings were really good at the beginning, but it took about three or four months, and she would start to transform things. So so pink primroses became this odd little creature that was walking. Um, and and it was I was always what was interesting was trying to figure out what was going on in her mind when she did that, but but it was impossible to come up. My favorite painting of all time, I call the orange meanie. And she was painting a butternut squash, and it looks like this jaunty little creature with a face that looks exactly like a blue meanie from Yellow Submarine.

SPEAKER_02 14:13

Yep. Yep, I saw that. It's over.

SPEAKER_00 14:16

Whenever I do the I wish I could get pictures on the podcast so I could show, but that would be Yeah, so it is just so I never thought, but and and nor did she, but the paintings as they got more interesting, I would share them with people, and the first word out of their mouth was almost always, I had no idea. People who've known your mom's. I used to say to people that art anybody. They would just if I told them that mother was living with dementia and show them this painting, they would go, I had no idea. That I used to say that Alzheimer's is scary and art isn't. And when you show people the art, it cuts off, it cuts past all their fear, and they can just enjoy the art. And then, and then and only then can you start a conversation about dementia because they're no longer terrified of it. They're fascinated by it. And that's what I loved so much about all of mom's art and and all of the art that people created in that class. Um some of one of the artists was the best artist I've ever found, ever, ever seen in my entire life. She was just astonishing uh artwork. Um, and they would take longer. Mother would would be so fast, she would finish her painting and then leave, and then come back and watch the group engaged in painting, and then she would say, May I join you? And then I'd get two paintings. And what was interesting, what what attracted her was not the idea of painting, it was the idea of being with a group and sharing something with a group. And that's what what she was interested in. But then the painting was just the humming was so much fun.

Discovery Of Creative Expression

SPEAKER_02 16:13

That would be yeah, I I would I I can only imagine hearing that humming and knowing exactly what it meant that she was locked in, that she was focused and and um good, so good. Talk to me about why what made you decide to write Don't Walk Away?

SPEAKER_00 16:37

Well, again, it was that it was first because the art was so fascinating and because it cut past all the fear. And and I wanted to share that art and and I wanted people who were terrified of dementia to take a walk with me and mom and see the joy in it and see the hope in it. And so many people think of dementia only with sadness, only with loss. And if that's all you, if that's your framework, that's all you're ever going to be able to see. Um, I was once talking to a man about his wife, 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 it's because all he could see was sorrow and loss. And that's once, if that's all you can see, that's all you will ever see. But because mom had opened my eyes, and because she was sharing joy with me, and I was sharing joy with her, that person that you thought was gone, you can see that person emerge, and it can be anything. Um, and so it I would tell people when they're I once talked to a friend, she said, My mom is developing dementia, and I said, and I don't know what to do. And I said, Okay, I know you're busy, and I know she doesn't paint, but just take five minutes, five minutes, and find one thing that you both enjoy doing, whether it's walking or looking at the sunset or singing a song. And just share that moment for five minutes, and you may be surprised to see that person you thought was leaving you and gone there. She's still there. And and I think it's just it's that belief that she's still here.

SPEAKER_02 18:41

Yeah. And I think you kind of touched on this a second ago. Um but your your book reframes Alzheimer's as not suffering from but living with. How does that simple shift?

SPEAKER_03 19:02

I am. That was one of the very first things I learned.

SPEAKER_00 19:07

That was one of the first things I learned is that first of all, I let go of the woman I thought she used to be, and I embraced the woman who was with me in the moment. And then I realized that this woman was not suffering from one poor, sad person who is, you know, just sad. Um, but she was living with it in so many vital and vibrant ways. And mother was living with wit and imagination and humor. And once you accept that, then you have a completely different relationship. And and that was the first big lesson I learned. She's living with. So when you talk to people who are working in the dementia biz, as I say, we we always use living with, people living with, not suffering from. Um because these are human beings, just like us.

SPEAKER_02 20:04

It's a very small but very distinct difference, isn't it?

SPEAKER_03 20:09

Yeah.

SPEAKER_02 20:12

Um okay, so now for and and this is gonna be for families or care communities, um how can they nurture creativity um in people living with dementia, even when communication becomes difficult? Did you ever have any problem communicating with your mom?

Art As A Bridge To Dignity

SPEAKER_00 20:36

Well, I with mom, she didn't understand all of this, you know, she played the piano, she she did all these things. It's basically just believing in them and giving them the chance and uh asking questions and listening and being there and smiling. Um if it were there were some people who thought, like mom, that painting was silly, but they didn't have a daughter who was making them go to the painting class. Um, but then they didn't go. But then they also went to the drumming class or they went to the the singing class. I mean, there were all sorts of activities that they could do. Um and so it's just believing that they are there and that they want to do something. It's also having opportunities for people to engage in activities, which is always and with each other. So it's not just one-on-one. Um and let's see, I actually wrote something down that I wanted to make sure that I told you. Um so that's basically it. That that one of the things I learned finally, the concept of enduring personhood that they people who live with dementia and we who don't share certain things that will never leave us. And and the need to laugh and the need for friendship. And the need to be of value and the need to love and to be loved. These are things that we all share. And so it's always just giving people the opportunity to do something fun. And if they don't find it fun, think of something else. Um but they're always anxious to be to do something that makes them happy. And and so it's just giving people the opportunity and and enjoy. I used to say with mom that mom would um start a conversation, I would just hop on for the ride. Yeah. Let's see where this goes. Yeah, mom was just mom, m mom was fun. Mom was always fun. And and you know, I I stopped reading books about dementia when this all this first started. I stopped reading them because they were all so sad. And they were all so and my story about mom and why I want people to read it is because it's filled with laughter and it's filled with joy. And it makes you feel good. And plus her art is fabulous. And so it's like it's not a living death. Right. These are people who are just living, these are human beings who are capable of living wonderful lives.

unknown 23:30

Yeah.

SPEAKER_00 23:30

They just need our support and understanding to do it.

SPEAKER_02 23:33

Yeah, and I I think so a lot of people, especially in the beginning of the caregiving journey, um, it's very easy to get frustrated with your parents or or whoever you're you're caring for, right? And if you just take the time which is kind of kind of my next question, really, is what's one lesson from the book that you wish everyone, caregiver or not, could take into their daily life? Is it that? Is it that message about listening or being present?

SPEAKER_00 24:10

Well, the that they're there, that they're there. Um, and then then there's some basics. Smile. It really goes a long way, smile, and um and share joy. Share joy, smile, listen and ask questions. It was it was interesting. Mother had questions that she would ask over and over and over and over again. And at the beginning, I would just come up with some clever ideas and then change the subject. And then I thought, well, if she keeps asking this, it must mean something to her.

SPEAKER_03 24:45

Oh.

SPEAKER_00 24:45

And her question was, what do I think Seattle's gonna be like in 50 years? And when I finally turned to her and I said, Well, what do you think it's gonna be like? She came up with all these incredible ideas and then ended with maybe women will start wearing skirts again. Um so it's it's again letting go of yourself and reminding yourself that it's not about you, not about how you would feel if you had dementia, but it's about how they're feeling. And nine times out of ten, they're light years ahead of you in learning how to live. And it's us to neck us to to make that leap. And then there's one question that we that I learned really early never to ask, which is do you remember or don't you remember? Because they don't. And it's only going to frustrate them, and it's only gonna frustrate you. So just that's not that's not the point. The point is, are they having a wonderful time? Not do you remember. Right.

SPEAKER_02 25:48

Yes, exactly.

SPEAKER_00 25:49

And they might so people at the beginning may be surprised that realizing that the person they thought was gone is still there. My sister once said, Mom left us years ago. To which I replied, Well, if she left, who's there? And I would suggest that it's somebody well worth getting to know.

SPEAKER_03 26:12

Yes.

From Caregiver To Care Partner

SPEAKER_00 26:12

People who I mean, and also these are fabulous, wonderful people. I I the best compliment I've ever received in my entire life came from Gloria, who was one of Mother's um associates, associates, pals. And every day I would give people a shoulder massage. I'd always asked first. And they wouldn't necessarily know what a shoulder massage was, but they see the person next to them going, ah. And so one day, Gloria came up to me and she said, Do you tuck your wings in a handkerchief when you're not here? So every day I was learning something, but every day it was fun. And in our family, we weren't used to sharing love. It wasn't ever spoken. So this incredibly restful, peaceful environment with these lovely people was an opportunity to share joy and to share love. It it was it changed, it's the best decision I ever made was being a care partner with mom. And I should probably mention when I changed from being a caregiver to a care partner. And that's when mom's art to me looked like it was deteriorating. And so one day I got there early before the painting class, and we did everything she liked to do. We played Scrabble, we looked at the view, we took a walk, and then I circuited the class, and her paintings completely changed. Warm animal images returned and different colors returned. And that's when I realized, I said, I get it. I have a role to play in this. We're partners. We're she's not just some poor thing who needs my help, that together we are building a better life for both of us.

unknown 28:06

Yeah.

SPEAKER_00 28:06

And so then she was my partner for nine years. Wow.

SPEAKER_02 28:11

Wow. Let's talk about the Art of Alzheimer's and the Mods Awards. Because you founded the Arts for Alzheimer's, right? Talk about what that is.

SPEAKER_00 28:25

Yeah. Well, I wish it was still around. I I it it was basically I did art exhibits. I did um uh once I did an exhibit of artwork created by people living with dementia from the age of 60 to 101. There were about um 45 paintings, and I think it was seen by 100,000 people in uh around King Camp. And and again, you what you're always looking for is that moment of just surprise, of like, I had no idea. And then the the freedom to want to learn more, the lack of fear. And that went on uh until I was approached by Richard Ferry, who is the founder of Maud's Awards. And his wife, Maud, had developed dementia. And um, he didn't know quite what to do. So he decided, okay, I'm gonna start this award program where we're gonna give away$100,000 every year for innovations in Alzheimer's care. And um, we've been doing, and so he said, and do you want to run it? And I said, Yes. So that's when I sort of shifted from the art of Alzheimer's. I have all the art, um, and it was fabulous. Um and but but now we're about to enter our seventh year. We're gonna open applications in uh March, and it's it's really simple. There are only six questions, and it's open to anybody individuals, organizations, for-profit, nonprofit. Um, and it's it's what's really wonderful about it is that Richard wanted to find something he could do to bring happiness to Maud, but he also wanted to share all of those innovations with everybody. So every year we do um a handbook of innovations, and it's available free on our website, and people can either download it or ask us to send them a copy. So I've been doing that for six years. So it'll be fun. It's always interesting, it's so inspiring to see what people are doing, and it's it's happening all over the country, and not as much as you want. I mean, it's still fear and loss is still the the operative thing, and and it's the the purpose, one of the purposes is to change the narrative from despair to hope.

unknown 30:57

Yeah.

SPEAKER_00 30:58

So we get to share all these wonderful ideas with people, and um and it's it's it's really it's really nice to be able to continue doing something good uh as one gets older.

SPEAKER_02 31:12

Yes, absolutely. I need that. Oh, wait, I have this. Um Okay, what do you think the caregiving community and society at large still needs to learn about dementia and human dignity?

SPEAKER_03 31:31

That people living with dementia are still here, that they are human beings just like us, and they need our support to live and thrive.

The Art Of Alzheimer’s Exhibits

SPEAKER_00 31:46

Um, and we need to believe that they can live and thrive. And I think the first step is that if you think that people living with dementia have no value and their lives are basically gone, then why would you want to put any resources into their lives? Well, you wouldn't, because you have other things to do with our our money in this society. But as a society, we're drastically failing them and their caregivers. And so I think the first thing they need to understand is that they're still here, still wonderful, valuable human beings, capable of living with joy and with meaning and with purpose. Then once they do that, then they need people need that's sort of like like you need to do this, but people will be able to discover the person they thought was gone and enjoy that person and listen to that person and remember that they come first when you're discussing with them. And as a society, we're doing a terrible job of supporting them, and we need to put more resources into their support and the support of their caregivers.

SPEAKER_02 33:00

Yes, for sure. Ah, okay, last question How can listeners support kindness and creativity and connection for people living with cognitive change in their own communities?

SPEAKER_03 33:22

What would you smile?

SPEAKER_00 33:26

They need to smile, they need to listen and ask questions and share joy and enjoy the moment. Those are the most important things. Because if you don't smile and ask questions, it's asking questions. One of the first things I learned was, and mother taught it to me, that if you put yourself first when you start a conversation, then it's all about you. But that's not the point. You ask questions and you listen. Right. And you ask how they are first. And that as we go through this journey, we become kinder, we become more invested in people's well-being, they respond, and together we all have a better life. And what what I discovered is that everything that enables a person living with dementia to live with happiness and meaning does the same for everybody, everywhere. Yeah. That we are so similar in our needs. We're different people. We see the world differently, but our basic needs are the same.

SPEAKER_03 34:46

Yeah.

SPEAKER_02 34:48

Absolutely. Well, Marilyn, thank you so, so, so, so much for for coming on and talking to me for a little bit today. Um these takes are so needed and so helpful. And I mean I would never wish a dementia or Alzheimer's. Um or maybe I would diagnosis on anybody, but we have people like you out there to to show us how to be the great caregiver that we all can be.

SPEAKER_00 35:32

And happier, kinder, better people can change your life. Human name.

Maud’s Awards And Innovation In Care

SPEAKER_01 35:45

Thanks so much for hanging out with us for today's episode of the Tness Matters Podcast with my guest, Marilyn Rakel. I really appreciate you tuning in and being a part of this kindness community. If you liked what you heard, leaving a quick review or a comment really helps others to find this show. And it means a lot to me personally. And hey, if you can't support us financially, that's totally okay. The best way you can support the show is to go out and do one random access for a stranger today. But if you are in a position to help us go, you can make a one-time gift or join one of our monthly supporters over on Find Me at Coffee. The link to the show notes. We will be back again next week with another episode. But until then, look. I'm just back. And so do you.