Healthy Living by Willow Creek Springs
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Healthy Living by Willow Creek Springs
Finding Joy In Dementia Care with Marilyn Raichle
What if the story we tell about dementia is upside down? Jill sits down with author and advocate Marilyn Raichle to trace her path from reluctant caregiver to devoted care partner for her mother, Jean—a journey sparked by a single painting class that turned fear into curiosity and connection. Instead of bracing for loss, Marilyn learned to invite joy first, and everything changed: colors warmed, conversations opened, and the person everyone thought was gone stepped forward again.
We unpack the small choices that make a big difference—arriving early to build a calm day, choosing rituals that prime the brain for engagement, and replacing “Do you remember?” with open questions that honor dignity. Marilyn shares how assisted living became a new family, how a piano medley stitched Silent Night to Polly Wolly Doodle, and why a plate of outrageously rich cookies can be medicine for the soul. She explains the power of language, preferring “dementia” as an accessible umbrella and pushing back on the paralysis that the word “Alzheimer’s” can provoke.
Marilyn also introduces Maude’s Awards, a national program granting $100,000 each year to individuals and organizations innovating in dementia care. These awards celebrate work that lifts daily life—programs that reduce anxiety, invite creativity, and center enduring personhood. Her book, Don’t Walk Away: A Care Partner’s Journey, gathers short, hopeful stories illustrated with her mother’s art, offering a practical and heartening alternative to despair-heavy narratives.
If you’re caring for someone with memory loss—or love someone who is—this conversation offers tools and a mindset shift: people living with dementia are valuable, with gifts to give and lives to live. Subscribe, share this episode with a friend who needs encouragement, and leave a review with one small change you’ll try this week.
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Well, hello, and welcome back to the Healthy Living Podcast. I'm your host, Jill Grumbine, and we've got a very special guest today. Her name is Marilyn Reichel. She's the author of Don't Walk Away. And she grew up in the shadow of Alzheimer's. Nearly everyone in her father's family, and many in her mother's developed this disease. And her mother, Jean, told her, When we get Alzheimer's, walk away. There's nothing you can do. So live your life and don't sacrifice it for us. But instead, um, Rachel became transformed, embracing the value enjoy of the people who are living with, not suffering from dementia. Marilyn, welcome. Welcome to the show. And I'm so glad to have you. You know, it's funny before we get started. My wife has been somebody who always somehow, I call her the dementia whisperer. She's been able to always connect with people that um I don't know, I think people give up on. And, you know, they come out to our gardens. We have a little nonprofit garden and they'll come out here and, you know, they'll leave them to sit and stare at the garden a little while. My wife will come walk up to them. Next thing you know, she's having a conversation, and their eyes kind of go from gray to a little sparkly again. And yeah, I learned a long time ago that you know you can connect to people who don't seem like it. I didn't mean to overwhelm your conversation, but I just wanted to share a little something that I do have a little um a little life experience that's taking me to where you're coming from. Welcome to the show today.
SPEAKER_00:Well, thank you. Thank you very much. It's a pleasure to be here.
SPEAKER_01:And um, you know, I I'd like to um, you know, lead with a little bit of of information from a bio, but more most importantly, I'd like to have you come in and just tell your story. And and you know, it sounds like with a family that sort of has this sentence wrapped around them that says, well, this is how it's gonna be. Um that's like, you know, your grandma's got diabetes and your grandpa's got heart disease, so this is gonna be your future. It's like, well, it doesn't necessarily have to be now, does it?
SPEAKER_00:Well, my mother's family were Scottish Calvinists, so everything was sort of framed by that. Um, and so it was interesting because I came to care and I was a caregiver first and became a care partner later. Um, but I when mom told us to walk away, my four brothers and sisters and I thought, okay, that makes sense. They're in a good place, they're gonna be taken care of. Mom and dad are together. So when mom started to show signs of memory loss, okay, we sort of visited every once in a while, but that was it. Um and when I came back from graduate school, it was in the recession, there were no jobs. So my family said, okay, we're gonna pitch our resources and we're gonna keep you afloat, and you're gonna be the family caregiver. Well, this is not something I had planned on. I did not want to do it, and I was not good at it. Um, so I took care of mom and dad's doctor's appointments. Dad was developing Parkinson's, mom developing dementia, and I did what I could, and I was eyes were always on the clock, always thinking, walk away, walk away. Um and when dad died at the age of 89, and they'd been best friends for 72 years. Wow. And I'd never seen mother cry because there was a rule in the family that when someone died, no tears. Going back to the Scottish Calvinists.
SPEAKER_01:Um and right, right, yeah. The Scottish have a whole different way of looking at things like that.
SPEAKER_00:Well, Scottish Calvinists, they all believe they're going to heaven, so there's no reason to cry.
SPEAKER_01:All right. So have a big party instead, right?
SPEAKER_00:Yeah. The the basic word was next. Um, so um, and you're not supposed to have funerals and you're not supposed to have memorial services. You're supposed to completely ignore it. Um, but mom was really lonely. So I took her to a painting class at the place where she lived. And we didn't expect anything. She didn't expect anything. And her painting was really, really interesting. And it was good. Um, and so I started going more often, fascinated by the art. And little by little, I began to accept, not fight, but accept where mom and dad were. Um, and then one day something happened where her paintings to my eye became sort of scratchy, like she wasn't interested anymore. They weren't very good. And I thought, hmm. So I got there early for the painting class day. And I got there early. We did everything she liked to do. We played Scrabble, which we played every day until she died. Um, we looked at the view, we took a walk, and then I took her to the painting class, and the painting completely changed. Warm animal images and different colors. And I thought, oh, I get it. I have a role to play in this. We're partners, we're partners in this. So, together, from that day on, together, we built a life with late-stage dementia, mid to late stage dementia, and and that's became her care partner. And it is the most rewarding thing I've ever done in my life.
SPEAKER_01:So, when you were not engaged with her, and she kind of just showed you that by dulling out her painting, and you caught that.
SPEAKER_00:Well, I always tell people to share joy because there's so many people who think who whose entire framework about dementia is nothing but sorrow and loss. But if that's your framework, that's all you will ever see. And once you give them the opportunity to experience joy and you can see them enjoying life, then that person you're missing emerges. I love that, and everything changes. So it was, and I still didn't know much about caregiving, but from then on, for the next nine years, we were together, and I learned something new every day, and I let go of the person who used to be, and I embraced the woman who was with me in the moment and living with, not suffering from. Um, and every day I learned something new, and it and I always assumed that she was excited to to have my visit because at that point I was still only visiting like twice, twice a week. Uh-huh. And when I got there, I thought, well, this is interesting. Mother's more excited about the people she lives with than me. So I realized mom had a new family.
SPEAKER_01:Wow.
SPEAKER_00:And fortunately for me, then they were willing to accept me as a member of their family. So I had six adopted new mothers. So it was just this wonderful experience. And I started to see every day. So it was like ultimately, it was every single day. It wasn't that I needed to be there, I had to be there. She was, she was everything she always was, slightly dim, changed, but ultimately who she was was intact. Very funny, very competitive. Um and and it was just this every day I learned something new. And in the process, I became a much happier and better person. That we were raised in a household where we knew Mother loved us because that was her job. But the word was never spoken, ever. Really? Ever. And when mom and dad first moved to independent living at Horizon House, one day, and I lived not far from there, and one day she visited me and I was taking a nap. And she laid down next to me and she told me she loved me.
SPEAKER_01:Wow.
SPEAKER_00:And I remember crying.
SPEAKER_01:Wow.
SPEAKER_00:And then she said, I guess I should have said that more often.
SPEAKER_01:No kidding.
SPEAKER_00:Well, that our lives as care partners unlocked all that love and gave it the chance to express itself. And so, in the process of me being with mom and making her life better, she was making my life better. Sure. And it was, it was just so wonderful. So every day I would be there with mom and all my adopted moms. And and it was just, it was just, I learned, I learned something every new. So it was so so I I took the paintings, and mother at this point re resists always, resisted the idea that she painted.
SPEAKER_02:Really?
SPEAKER_00:When I when I would when I would tell her that the paintings were so beautiful, she said, I didn't do that.
SPEAKER_01:Really?
SPEAKER_00:Yeah. And I didn't do that. And one day I said, Oh, everyone loves your paintings, Mom. She said, Well, I must have gotten that from your father's side of the family. And I think it again had something to do with the the Scottish thing. They all they mother played the piano every day. Everybody was involved with the arts, but never painting. It was considered, I don't know why, but it was just like, no, yeah, I didn't do that. So, but I saved all the paintings because I didn't save them, she'd throw them away.
SPEAKER_01:Oh, really?
SPEAKER_00:And when I would show the paintings to people, their first reaction was always the same. I had no idea. Huh. The art, I used to say to people, Alzheimer's is scary, art isn't. So you look at the painting, and it was so interesting that it gave you a way to deal with the disease, but first enjoy the art. That took care of the the fear, got you all the way past the fear, and then you could talk about it, but not before. So, so I started to do art exhibits and and you know, and it was just it was just so that was fun.
SPEAKER_01:Um and then about that, like how do you get involved? Like, how how many paintings did she have?
SPEAKER_00:Well, mom, I mom probably had I've saved uh of all of mom's. I probably had about 300 of them. Oh, but then but the art exhibit, the art ex the first art exhibit I did, it was called The Artist Within. And it had 52 paintings by um all these incredible people living with dementia, aged 60 to 102.
SPEAKER_01:Whoa.
SPEAKER_00:And it was it was it was amazing. Um, and so that's how I got involved the art. The art's what pulled me in, but then it was just being with mom every single day and learning and learning how to be a care partner. So when I was looking at your past um shows with T P Snow, when I was reading all her comments, I was going, yes, I learned that the hard way. I didn't have anyone to talk to. Um it was, it was, and I you know, now that Christmas is coming up, one of the standard discussions was okay, it's Christmas, we're gonna have dinner. Should mom come? Because being away from assisted living made her anxious. And would it would she know anybody? So one one year I took her to Christmas, or might have been Thanksgiving, and I just decided that okay, I'm gonna make sure she's I'm with her first. She she comes first. If she starts to get anxious, we'll leave. But she sat there at the dinner table listening to everybody. I don't think she knew who everybody was. And at the end of dinner, she sat down at the piano and started to play.
SPEAKER_02:Really?
SPEAKER_00:And everybody applauded when she was through. And I remember thinking she sat there looking around at all these friendly new faces.
SPEAKER_01:Right.
SPEAKER_00:Yeah.
SPEAKER_01:So it was just for me, so remembered how to play the piano and all the songs that she knew.
SPEAKER_00:And and well, actually, it's really interesting because I took videos of this. Um, she played since the time she was a little kid, but at a certain point she forgot how to read sheet music. Okay, and so she developed her own special medley. And she played, and it started with Silent Night, and at exactly the same moment, every single time it morphed into Polly Wally Doodle all day. Sorry. And I actually in the book that I wrote about her, it there is actually a recording of mom playing the piano when she's 96.
SPEAKER_01:Wow.
SPEAKER_00:Yeah.
SPEAKER_01:So it was just, and once juxtaposition of songs.
SPEAKER_00:She's she was great. And then all of her, all of my my adopted mothers. So that one of the things I did every uh every day when I got there, I would ask all of the ladies at the the ladies at assisted living, I called them, I'd ask them if they wanted a shoulder massage. And most of them wouldn't know what I meant, but they'd look at the person next to them going, and they'd they'd want one. So one day Gloria came up to me and I got the best compliment of my entire life. She said, Do you tuck your wings in a handkerchief when you're not here? Yeah, she was, she was, she was great. It was just so I learned, I learned how to relax. I learned how to enjoy the moment. Because that's her mom lived. Enjoy the moment and and hop on for the ride.
SPEAKER_01:Um, I it was just that's such a beautiful lesson, though, because you know, especially people that are you know successful or driven, they they lose a lot of the joy sometimes in just staying focused and accomplishing and and all of this. Next thing you know, you blink and you're 20 years older, and you're like, what the heck did I just do?
SPEAKER_00:Yeah, that's what I was like. I I and with mom, I learned how to relax. I learned how to listen, listen and ask questions. So that one one thing she said over and over and over and over and over again, she said, What do you think Seattle is going to? That's where I live, Seattle. What do you think Seattle's gonna be like in 50 years? And sometimes I make up stories about it and I thought it would be. And then I thought after a couple of years of her asking this question, I thought, well, obviously this means something to her. So I asked her, well, what do you think it's gonna be like in 50 years? And she said, Well, maybe we'll all fly. Maybe women will start wearing skirts again. Okay, all these, all these ideas started to coming out, and it was, and I thought, what stories I missed.
SPEAKER_01:Right.
SPEAKER_00:Because I wasn't taking her seriously. So I learned to listen to her, I listened to ask questions, I listened to to take her seriously, and I learned one huge lesson, the lesson of enduring personhood. There's certain things that we as human beings all share, and they never leave us. And one is the need for friends, and one is the need to be of value, one is to laugh, and one is to love and to be loved.
SPEAKER_02:Sure.
SPEAKER_00:These never leave us. And I learned to start sharing, I learned to become like human beings. Nice. I was raised in this really, really competitive household where all you needed to do, the most important thing was to win. Okay. And with mom, assisted living, I used to make I used I used to confound people when I would tell them that I would go to assisted living to relax.
SPEAKER_01:Yeah.
SPEAKER_00:Because it's so calm. There are no deadlines, there's nothing there but love. And it was, it was just, and and I would, it was just so wonderful. Um and mom's family, my family, when mom died at 96, um, I actually went back to assisted living the very next day to relax. To relax. Yeah. And and Ruby, who was from Atlanta, and she looked at me and she held up this red plastic flower. And she thinks, I think about Gene every time I see this. You want to know why? And I said, why? And she said, because she tried to eat it. And so she made me laugh. And and I just felt safe. And it was actually, it took a conscious will of effort to rejoin the world because I found it so peaceful and so serene with them. And I know that sounds odd because there are lots of people who have a difficult, really difficult transition. But I've always thought that if so much of people's anger in living with dementia comes because we're not really sure how to deal with them. The whole, you know, one of the worst questions you can ask somebody is do you remember or don't you remember? Well, no. And it just makes them anxious and it makes you anxious.
SPEAKER_01:Right, right. Yeah, and confused and maybe frustrated and all these things, you know, being made aware of something that you don't know about anymore. Right. Why would you do that?
SPEAKER_00:And not listening to them, and and but but embracing them as genuine people, and that my goal in life is there's so many people, mass, the math, the vast majority of people, think of people who live with dementia as not worth living, as having no value, as lives having no value. And until we believe, accept the fact that people who live with dementia are valuable people with lives to live and gifts to give, we will never put effort and finances and resources into their support, enabling them to live with happiness and meaning and purpose and joy, which they can.
SPEAKER_01:Now you talk about two different terms, one is Alzheimer's and one is dementia. Yeah. And are they are these interchangeable? I know Alzheimer's is like a a diagnosable condition. It it has sort of parameters, and dementia is kind of a broad sweeping descriptor, but is there anything more than that or or do we use these words interchangeably?
SPEAKER_00:Because of all of this, my new my new job now is working with a I'm now in the biz of dementia. All right. Um, and so my new job now is working with mods of words for innovation and Alzheimer's care, which we now wish we had called dementia care, because Alzheimer's just too scary, stops the conversation. So I tend to go back to dementia, even though it's a vast um I mean, we used to say, okay, all sorts of things happen to you when you get old. You start, you can experience mild cognitive impairment. You start to forget things. Everybody does.
SPEAKER_01:And of that number, it happens early on, I tell you that. Yeah.
SPEAKER_00:And it of that number, some people develop dementia. And of that number, some people develop Alzheimer's. Well, that's too technical. I'm just saying dementia. That's what most of us say now.
SPEAKER_01:Um, all all Alzheimer's is dementia, but not all dementia is Alzheimer's.
SPEAKER_00:Correct.
SPEAKER_01:Yeah. Fair enough. So this um mods awards for innovation in Alzheimer's care. Why don't you tell me a little bit about that?
SPEAKER_00:Well, so my my the man who founded it, his name is Richard Ferry, and his wife developed his wife because he loved and adored his wife. And in 2013, she started to develop dementia. And he didn't know what to do. He had no idea. And so he read and read and looked and looked. And then he finally thought, well, all right, I will start this program where we're going to give away$100,000 every year for programs of excellence in Alzheimer's care. Okay. And so every year we and so I get to run it, which is so exciting.
SPEAKER_01:Wow.
SPEAKER_00:And so run it every year.
SPEAKER_01:It gives away money. I like that.
SPEAKER_00:Every year we give away$100,000 for innovations in Alzheimer's care. And we're now entering our sixth year. And um, you can go to mods awards, M-A-U-D-E-S, modsabs.org. And uh it's it's nice to be able to get older and do still do good things. Um and so that's that's what I'm gonna apply.
SPEAKER_01:Like, do you guys search out um groups or or um individuals that are are in that world, or do they apply, or how does that all work out?
SPEAKER_00:Well, it's really it's actually a really simple it they apply. Um and it's not a grant, so it's it's it's an award for something that one has done. And our goal, our our challenge is to reach more individuals. So any organization, any individual, for-profit, nonprofit is open. Um and it's it's always looking for something that has made life better and happier and more enriched for people who are living with dementia.
SPEAKER_01:Is this regional, national, international?
SPEAKER_00:National, national, national and territories. All right, yeah. One woman from a territory schooled me on that one, and I said, You're absolutely right. And and so that's what I'm doing now. Um, although I'm still what I what was difficult is during COVID, I couldn't go back and see all of my moms. I wasn't allowed to go back. And many of them, most of them now have passed, um, which is too bad um that I didn't get to see them.
SPEAKER_01:Um most difficult elements of COVID was that people weren't able to stick together and they weren't allowed to even.
SPEAKER_00:Right. I wasn't allowed in, which was really irritating considering that I was sort of a part of the family. Right. Um and but they were up until the the moment, because after mom died, I still worked with them for another um, you know, was always there for another four years. And and then one woman, Evelyn, she was 104.
SPEAKER_01:Whoa.
SPEAKER_00:And she didn't have dementia, but she was 104 and she needed support. And so she became my next mom. She was beautiful. And so my only experience with hospice is that at 105, um, Evelyn was in hospice, and I I went to see her, and I sat down next to her and I told her I loved her, and she opened her eyes and she said, Life is so beautiful. And she closed her eyes.
SPEAKER_01:Wow. Yeah.
SPEAKER_00:Yeah, it was, it was actually it was what was even better is that when she was 104, she wasn't feeling well, and she decided that she was going to die. And everybody in the building said, Oh, Evelyn, we're gonna miss you so much. And I said, Evelyn, I'm gonna make you some cookies. Every Christmas I would make this uh ridiculous number of incredibly rich cookies. So I took her this plate of really wonderful cookies, and she revived.
SPEAKER_01:Ah, decided not to not to die today, right?
SPEAKER_00:And so from then on, all the ladies that assisted living decided that my cookies were the secret to a long life.
SPEAKER_01:I love it. I love it.
SPEAKER_00:And every time I got there, Ruby would look at me and she said, get in the kitchen, start cooking.
SPEAKER_01:Keep those cookies coming. Yeah. So yeah. Tell me a little bit about don't walk away.
SPEAKER_00:Oh, so I wrote this is what because of what mom said, but it's called Don't Walk Away. So mom said, Walk away, which I was prepared to do. But once I realized that that was a mistake, that I walked back in and how rewarding, how enriching it was for both of us. So I wrote this this book because I've written every single thing mom and I did and said together.
SPEAKER_02:Oh, wow.
SPEAKER_00:So I wrote this book about so very short, illustrated by all of her art. Oh, nice these short stories about me and mom. Okay, starting at the beginning and when I was in deep denial, up until after to the day she died. And it was all all with her artwork. And so it's it's really just it's it's a book. I stopped reading books about dementia because they were so depressing, so depressing. This book is uncharacteristically happy and hopeful. And so, if my goal in life is to change the narrative from despair to hope, and this is like take a walk with me and mom and experience the joy that we did, and how she changed my life, and how it was the most rewarding, wonderful thing I've ever done. Plus, the art's fabulous. Um, and so it's this sort short book. Um, and so it's all about me and mom and um filled with lessons and laughter.
SPEAKER_01:I love it. I love it. And how does somebody find the book?
SPEAKER_00:Well, you can get it at Amazon, but there's a trick to Amazon because it turns out there are a ton of books that are called Don't Walk Away.
SPEAKER_01:Oh, of course there are.
SPEAKER_00:And so you actually have to add put the whole title in, which is Don't Walk Away, a care partner's journey. Otherwise, you're gonna get lost in a sea of and and we're working on actually opening up all sorts of platforms that will get us into Art Barnes and Noble, but that hasn't been sealed yet. Um but it's right now it's on Amazon and it's it's it's fun. It's it's yeah. So yeah, mom and me. Mom and me. And mother, mother made me laugh on her deathbed.
SPEAKER_01:Nice.
SPEAKER_00:That is not easy to do.
SPEAKER_01:I would say that would be an ultimate goal of life, right?
SPEAKER_00:Well, they were raised by a Republican banking family during the depression, and they hated Franklin Delano Roosevelt.
SPEAKER_01:I'll bet.
SPEAKER_00:Anytime Mother heard the word or saw the name, she would look at me and go, we didn't like him. At least I know. So she's on her deathbed. Her blood sugar has spiked to 600. She's in a coma. And my brother and sister and I are standing around her, we're singing to her and we're telling her we love her. And I mentioned her dislike of the Roosevelt Hotel, and she flinched. So I knew she could hear me, and I knew she understood me. So for the next two days, I sat next to her and held her hand and talked.
SPEAKER_01:Oh, that's sweet. I love that. Well, Marilyn, if if you have a thought that you could leave our audience with, um, what do you think that would be?
SPEAKER_00:People who live with dementia are wonderful people with gifts to give and lives to live. Don't be afraid, relax, ask questions, and listen.
SPEAKER_01:I love that. And is there um any contact information with either you or your organization or both that you'd like to share with us?
SPEAKER_00:Well, if you're interested in more about the book, you can go to don't walk away.net. That'll take you to the book site. Um, and if you're interested in mods awards, which opens in March, um, that's mods awards, M-A-U-D-E-S, modsawards.org.
SPEAKER_01:Fantastic. Well, as I suspected, you were a little um hesitant when we first got started, a little unsure of yourself. And I I knew we were gonna have a great conversation. I want to tell you, we had a great conversation. I love your story, I love your work, I love, I love the messages that you have, and you've been a beautiful guest for this podcast. And I would always welcome you to come back and share more.
SPEAKER_00:Well, thank you. That's very nice of you to say. Thank you.
SPEAKER_01:Wonderful. Well, this has been another episode of the Healthy Living Podcast. I'm your host, Joe Grumba. I want to thank all of our listeners for making this show possible, and we will see you next time.
