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Don’t Walk Away: What If Dementia Isn’t the End of the Story?

Dr. Heather Sandison, ND (00:01.599)
Welcome back to the Think Well, Age Well podcast. I’m your host, Dr. Heather Sandison. Today’s guest brings a perspective on dementia that is both deeply personal and quietly revolutionary. Marilyn Raeckel grew up in the shadow of Alzheimer’s disease. Nearly everyone in her father’s family and many people in her mother’s family developed it. Her mother once told her, when we get Alzheimer’s, walk away. There’s nothing you’ll be able to do. But Marilyn didn’t walk away.

Instead, she leaned in and what she discovered transformed not only her relationship with her parents, but her entire understanding of what it means to live with dementia. She has a background in the performing arts and a master’s from Harvard’s Kennedy School. Marilyn went on to found the art of Alzheimer’s, inspired by her mother’s unexpected creative awakening. Today, she serves as executive director of Maud’s Awards for Innovation in Alzheimer’s Care.

and is the author of Don’t Walk Away, A Care Partner’s Journey. Her work is challenging, one of the most deeply held assumptions about this disease, that there’s nothing left. Instead, she invites us all to see what is still possible. Marilyn, thank you for being here today.

Marilyn Raichle (01:18.962)
thank you. It’s very nice to be here.

Dr. Heather Sandison, ND (01:21.301)
You grew up surrounded by this disease. Before you became a caregiver yourself, I’m wondering, you know, what were some of the experiences you had, the thoughts and ideas that formed how you thought about the disease, how you approached this?

Marilyn Raichle (01:39.65)
Mom was very clear, and there are five kids in our family, and she was very clear to all of us from the time we were young that when we get Alzheimer’s, I want you to walk away.

and we all thought, okay, that makes sense. And in fact, as teenagers, we used to invent ways to kill my father when he developed Alzheimer’s. Very ghoulish family. And so it was considered like a death, actually like a fate worse than death because you were still here. And so I had no intention ever of becoming a care partner for mom. And it happened only because

because when I came back from graduate school, it was during the recession and there were no jobs. And so my family said, okay, we’re gonna pool our resources, we’re gonna keep you afloat, and you’re gonna be the family care partner.

Well, number one, I had no desire to do that. I really, really, really didn’t. And I didn’t know anything. And I also have to say right at the get go, I was never a family caregiver. These people have the toughest job on the planet. Mom and dad lived in a really good continuing care facility. And it was…

So I was more or less there to keep them occupied, to make sure they go to doctor’s appointments, but the place where they lived, Horizon House, took care of most of their care. So I had it easy, but I didn’t want to be there. And whenever I got there, which was only once a week or maybe often, more often.

Marilyn Raichle (03:18.477)
Mom’s words were always in the back of my mind, walk away. Walk away. And so this went on for about a year and a half. And I was not good. I was there reluctantly. And I looked at the clock. And it was gradual that I started to slow down and listen to them. And after all, remind myself.

Yes, these are my parents and I do love them even though that word was never spoken in our childhood. Never. And so, Mom wanted the best for Dad because Dad was developing Parkinson’s. And Dad wanted the best for Mom and I wanted the best for both of them. So it was shared goals that brought us together. But I was still not a good caregiver. And it was only

only after dad died. Dad at 89 died and my brother and sister and I were in the room with dad and mom. Mom was asleep and we thought should we wake her up because she’s not going to remember and we have to tell her this over and over again. But they’ve been together for 72 years. So we woke her up and I’ve never seen tears like that from mom. There were rules in our family.

when someone died, no tears. It was a family that was informed largely by Scottish Calvinism, which regarded emotions as an indulgence, and especially around matters of death, because they all knew they were going to heaven, why bother? And so it, oh, sorry. And so,

Marilyn Raichle (05:13.378)
Sorry. And so when dad died and mom started crying, we’ve got her calmed down. And the next morning I got there early just to make sure she was OK. And she remembered. And we talked about dad and what a wonderful life they had. And the next morning I got there early and she remembered. We talked about dad. What a wonderful man he was. And the third morning I got there.

and she was lying on her bed crying. And she said, just want to be with your father. And without thinking about it, I 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 started to rejoin the world. And the first thing I did was that she was so bored.

Dr. Heather Sandison, ND (06:02.932)
you

Marilyn Raichle (06:08.3)
that I took her to this painting class for people living with memory loss. I didn’t expect anything. She didn’t expect anything. In fact, she thought painting was stupid. So her painting was fabulous. I was stunned. She didn’t care because she claimed she didn’t do it. For years, was up. I didn’t do that.

So I kept going every week on Tuesdays for painting class. I took her to the painting class. I would take the painting from the previous week, otherwise she’d throw it away. And she’d paint again. And her paintings were just incredible. These brilliant paintings. And at first, when she saw a flower, she painted a flower. And then she started to transform things.

A zucchini became a dragon. It’s just really, really interesting. So that was when I started to go, I see she’s still here. She’s still living with wit and invention. And I still wasn’t totally there. I wasn’t a care partner yet.

And that’s when I started the art of Alzheimer’s because whenever anybody saw the art, their first words were always the same. I had no idea that the art effortlessly got people past their fear and resistance and enabled them to think and feel. So that was the beginning of my journey with MAHL.

Dr. Heather Sandison, ND (07:52.181)
I’m curious about before that. So your mom and dad both shared this idea that Alzheimer’s is a fate worse than death. Just walk away. Don’t torture yourself. Just walk away. Where did that come from? I know that there was lots of other dementia in your family. Had your parents been caregivers for their parents or siblings? Where did this trauma come from?

Marilyn Raichle (08:15.852)
Well, mom was the caregiver for her mother and she was again living in this really good place, but mom didn’t want to be a burden the way she felt her mother was. And with all of the other aunts and uncles on my father’s side, we would all just wait and watch and who got it next. And again, if the fact that we were thinking about killing my father when he got Alzheimer’s shows you how we felt about it, that it was

death. And so it was a dark vision. We did not like so many people in this country. We did not believe that people living with dementia had value, had lives worth living, that we just walked away. But it was really came from mom and her experience with her mother. I mean we used to to make fun of grandma.

When the minister would come by to call, grandma would say, I’m not that kind of woman. So we used to make fun. But it was never anything that we experienced because mom kept us far away from it.

Dr. Heather Sandison, ND (09:26.952)
I see, so it just kind of came through your mom’s experience that there was this rejection of people with Alzheimer’s. Once they had that, yeah, there was no value.

Marilyn Raichle (09:28.91)
you

Marilyn Raichle (09:35.288)
Yeah.

Marilyn Raichle (09:38.609)
I think that’s all too common.

Dr. Heather Sandison, ND (09:40.681)
Yeah, absolutely. Right, and it’s also, I guess I’m a little bit curious.

about not only not no value, but the burden, right? It’s actually really negative. There’s financial burden, there’s emotional burden, there’s physical burden. And you mentioned it when you were first going and acting as the family liaison at the care home, that every time you’re there, you’re watching the clock. like, when is my shift over? When can I go home? When can I go back to my life? And so there is this not only an absence of value, but really an impingement,

Marilyn Raichle (10:08.195)
Yeah.

Dr. Heather Sandison, ND (10:16.278)
It’s a liability.

Marilyn Raichle (10:18.456)
Well think of the strain we put on families who are living with someone who is living with dementia. In so many of these families, they have children, have jobs, they have their loved one who’s living with dementia. It’s a huge struggle and we as a nation, as a society, offer them no help whatsoever. In fact, we only offer that it’s a burden.

that why bother? I mean I’ve had people say to me, my brother-in-law died, it’s just as well he had dementia. I to die is a relief. That we offer people, and I firmly believe this, that we as a society will not begin to provide the support that people living with dementia need to live with.

happiness and to thrive unless we believe that their lives are worth living. We just reject it. And so the strain we put on family caregivers is enormous. I personally think they should be paid.

Dr. Heather Sandison, ND (11:26.418)
Yeah, without a doubt. You know, there’s a lot of nuance here because I’ve had, I was actually having this conversation with a dear friend of mine. Her mom has Alzheimer’s and her mom has gotten to a stage where she’s quite combative and she’s miserable.

and making everyone around her miserable. And so there was this very nuanced conversation about like, well, she’s on these blood thinners. Should we stop the blood thinners? And maybe she like could potentially have a stroke a little sooner and that wouldn’t be the worst thing in the world. And to say that kind of thing out loud is terrifying, right? It is so, there’s so much judgment coming from every direction.

Marilyn Raichle (12:08.194)
Yeah.

Dr. Heather Sandison, ND (12:08.754)
Right? You’re supposed to keep them alive as long as possible. Do everything you can to intervene. And if you have the DNR, there’s a little bit of, do not resuscitate, right? There’s a little bit of judgment. But if you jump all the way to like, should we put her in, like what about everybody else who’s becoming a martyr to this? There’s just very nuanced conversation to be had here that I think is a struggle to have in families. Society does not really respect that conversation or make space for that conversation.

And my opinion at this stage is that there’s not one right answer, that each family will have to navigate it with the nuances and dynamics and resources that they have. But I’m curious your insights there.

Marilyn Raichle (12:51.768)
Well, I would say that, yes, it’s true that sometimes it’s a very, very, very, very, very difficult situation. But I do also think that how we react and relate to people who are living with dementia makes a huge difference. If we don’t know how to speak to them, if we don’t know how to listen to them,

if we don’t know how to relate to them, if it’s all about rejection, then how do you expect that they’re going to react? That combative response can possibly be lessened. So I’m not going to project on anybody’s experience, just in all my… When I began to accept this,

And I started to visit mom all the time because of the art. And then…

Marilyn Raichle (13:58.543)
I kept learning every single day how to better react to her. Now with mom it was easy because mom was incredibly funny and she was, I’ve always said mom was distilled to her essence. She was funny, she was competitive, she was basically the mother I always knew. Different, but always knew. But what was interesting is that when I began seeing her more often and

I just assumed, I was assuming a lot of things. Of course, Mother’s going to be excited to see me because I’m her daughter. But then I realized she was far more interested in the people with whom she lived, that they were her new family. And fortunately me, they were willing to accept me as a member of their family. So it was when I started, at first I,

One big change is that I let go of the mother I thought she used to be. stopped asking these questions like, do you remember or don’t you remember that are meant to reassure you that she’s still there when in fact she’s not. She’s let it go and accept the person who’s living with you in the moment. Don’t fight it. Don’t test it. Makes her unhappy, makes you unhappy. And that

I let go and I began to embrace the woman who was with me in the moment. That makes a huge difference because you’re not fighting them. You’re not trying to make them be something that they can be otherwise. And then, yeah. Well, that was a thing that was so amazing after, cause I was with mom as her care partner caregiver for like 10 years.

Dr. Heather Sandison, ND (15:33.3)
Imagine if we did that with all of our relationships.

Marilyn Raichle (15:44.791)
And that after all those years, and I learned so many things about how to live with people living with dementia, I realized that everything that makes them happier and enables them to thrive works the same for everybody, everywhere. You’re listening to them. You’re asking questions. You’re giving value to what they’re saying. It’s a skill.

So with mom it was easy, but it’s not always easy. But there are ways you can relate to people that lessen that stress. And so with mom, all these people with whom she lived, all my new mothers, adopted mothers and assisted living, I never only once did I encounter somebody who was so angry, who was so

rejectful that I didn’t know how to deal with it. And I asked the staff, said, I don’t know how to deal with this. You’re going to have that. But with everybody else, I was treating them as human beings. I was treating them as people of value. And it makes a difference. that it exists, yes, you see the difference, but if you fight the difference, it’s going to make it even worse.

Dr. Heather Sandison, ND (17:03.764)
Yeah, there’s this window of opportunity to connect at a different level.

Right. And, and, like you said, distilled to her essence, right? We all can be distilled to our essence and there is some parallels and communicating with children, right? And, even animals, there are these basics of just being present and coming with sincerity, approaching the conversation and the connection, the communication with sincerity. You get different outcomes, right? If the, if the goal is to put someone into that rest, digest, heal, comfortable space,

Marilyn Raichle (17:24.312)
Mm-hmm.

Dr. Heather Sandison, ND (17:37.755)
there’s more room for connection. But if our interaction with them puts them on the defensive, makes them feel attacked, then of course they’re going to be in a fight-flight-free state and we’re not going to have the capacity to connect and be creative, like certainly in your mom’s scenario.

Marilyn Raichle (17:43.448)
Right.

Marilyn Raichle (17:51.768)
Yeah.

Dr. Heather Sandison, ND (17:55.295)
So, and that’s true no matter what living organism we’re engaging with, right? We want to get into that rest, digest, heal state so that there can be more connection. And you really have this incredible story around how profound flipping that switch can be. So I want to get into kind of, yeah, like the nuts and bolts of this. And I think that part of the reason I brought up my girlfriend and her experience right now is because where I don’t want to go is into judgment.

Marilyn Raichle (18:05.165)
Right.

Dr. Heather Sandison, ND (18:25.072)
around others’ experiences, right? Each family is unique. Like you have this incredible, it sounds like you have all these siblings who are very supportive and wanted you to be there, and even though you didn’t want to be there, but there was a dynamic that allowed you to be there and kind of be that liaison for your family responsible for your mom’s care.

Marilyn Raichle (18:26.86)
Right.

Dr. Heather Sandison, ND (18:44.114)
And for some people, they’re stuck in it themselves. They don’t have siblings. They don’t have other people. Or they’re arguing with their siblings and fighting over the power dynamics. So I just want to give voice a little bit to the range of experiences that can be had here. And then now I want you to just tell us, how did this profound transformation take place?

Marilyn Raichle (19:05.378)
Well, partly it was when I saw her art. It was like I had no idea. Like everybody else, I had no idea. And because I had to be there, I had to continue to be there. And what was interesting is that I was still seeing her. I mean, at that point, because of the art of Alzheimer’s, I must admit, I will confess, that I was more interested in mom’s art than I was in mom’s.

Dr. Heather Sandison, ND (19:13.566)
the surprise and awe.

Marilyn Raichle (19:33.515)
Every week I get there, I grab a photo, go back to start amplifying its impact. about a year, it took me a year.

that changed. had my sort of aha moment. once I was looking at her art and before that she was doing all these incredible transformations. just, I mean she made this butternut squash look like this jaunty little creature with a face that looked exactly like a blue meanie from Yellow Submarine. I mean it was just, they were always amazing but that started to deteriorate and her painting started to me look like she was losing interest. Same colors, same scratchy lines.

I thought, hmm. So I got there early to painting class and we did everything she liked to do. We looked at the sky, she played the piano, we sang, we played Scrabble, which we did every day. And then I took her to the painting class and her painting completely changed. All of a sudden these warm animal images started to appear. And that’s when I realized, I see, I have a role to play in this.

We’re partners. So from then on, for the next nine years, we worked together to build the best possible life for both of us. And that went for me as well as mom.

Mom was always light years ahead of me and living with dementia, but I was still fighting it. But once this happened, I wasn’t fighting it anymore. It was, we’re working together, we’re partners.

Marilyn Raichle (21:17.422)
care partner. that’s for the next nine years. That’s how I lived. I wrote down every single thing mom and I did for nine years. It was fascinating. every day, and by this time I was seeing her every day, and it wasn’t something that I had to do. It’s something I needed to do, needed to be there. And every day I learned something new. I learned something new about living. And it was just…

so wonderful. The women with whom she lived were also wonderful. One of the things I started doing was giving everybody shoulder massages. I’d get there and I’d ask everybody if they wanted one. They wouldn’t necessarily know what I was talking about, but they’d see the person next to them swooning with pleasure and they would want one. Even the staff wanted them at a certain point.

I got the best compliment of my entire life from Gloria, one of my adoptive mothers. She came up to me and she said, do you tuck your wings in a handkerchief when you’re not here? mean, just so every day was happy. Every day was this effortless ability to express and receive love, which was not how I was raised.

Dr. Heather Sandison, ND (22:26.9)
you

Dr. Heather Sandison, ND (22:40.019)
you

Marilyn Raichle (22:42.668)
I was raised to win, to not listen to other people and just to win. But now I was listening to the people. would ask mother questions, something I hadn’t done before. She used to say, what do you think Seattle’s going to be like in 50 years or 500 years? didn’t matter. And at the beginning I would make up these stories and then I’d change the subject because I found it boring. And then

One day I asked her what she thought it would be. And she said, well, I’m not going to be here, so you’re going to have to come up and tell me what it’s like. And I said, but what do you think it’s going to be like? Do you think we’ll be underwater? And then we avenged ourselves swimming through Seattle. And then she said, well, think women will be wearing skirts again. And every day we had fun.

And she didn’t always know who I was, but she always knew she was happy to see me. so it was, and every, she still didn’t, she still would not acknowledge painting. I don’t know where that came from, but I would compliment her on her art. She’d go, I didn’t do that. I said, it’s really pretty. And she said, I must have gotten that from your father’s side of the family.

So it was just this…

wonderful, wonderful experience. It changed me more than it changed mom. It made mom happy. But it changed me incredibly. I am a much nicer person now than I used to be.

Dr. Heather Sandison, ND (24:26.996)
Do you have a sense of like, was that creative aspect of your mom always in there, but sort of rejected through that buttoned up sort of, mentioned this Scottish cultural rejection of emotion and it sounds like potentially even creativity and artistic expression. Do you think that that was always in her or do you think that something changed in her brain that allowed it to be?

Marilyn Raichle (24:51.15)
I don’t know. Everybody in her family was involved in the arts. My grandfather wrote poetry. Mom played the piano every single day of her life from the time she was like six. Her sister Louise, she played the piano. People played instruments, but for some reason art. No. I asked her sister Louise once, said, did you ever paint? She said no. I don’t know why, but.

once she started to do it. And it wasn’t, what was interesting is that it was there, but it wasn’t the painting that attracted her. It was the chance to be at the table with all these people. It was the part of, via this community. fact, sometimes she was really fast. So she’d paint and then she’d get up and leave.

And then she’d walk around the halls and then she would see this group of people sitting at a table and she’d say, may I join you? And they would say, why, yes. So she would paint again. And so it was just, I don’t know, it had something to do with painting, but the piano, mean, it was interesting that Mother, when she lost the ability to read sheet music.

And so she developed her own special medley and I have videos of it because I found it so fascinating. And she began with Silent Night and at exactly the same time, every single time, it would morph into Polly Wolly Doodle all day. And her skills on the piano were brilliant. And so there was something there. It was always there. And we used to sing all the time.

We had one favorite song, Winter Wonderland. we didn’t know, Mom didn’t know the words, so we just sing the melody. And when we finish, we go walking in a winter wonderland and Mom will go bum bum. it was just, we had fun together. And so there are a couple of things I want to say about that. That if you’re

Marilyn Raichle (27:10.702)
It’s not about you. It’s not about whether you might get to mention how you might feel, which scares people. I want to see the woman I used to know back. And I met this man once, and he was telling me about his wife who lived 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.

Dr. Heather Sandison, ND (27:17.556)
have.

Marilyn Raichle (27:39.937)
I thought, why is it that he couldn’t see what I most likely would have, which is a woman with something to say? I think that if your entire framework is nothing but sorrow and loss, that’s all you can see.

happiness together, if you can watch her experience happiness, then you can see that person you thought was gone emerge because you’re seeing this person enjoying themselves. So when I meet people who having a hard time, say, okay, try this, just try this. Take five minutes, pick one thing that your mother enjoys doing, or your father.

or that the both of you do. And just do it together for five minutes. could be singing, it could be painting, it could be looking at the view, it could be anything. But just do that briefly and you’ll see that person that you thought was gone having fun and it can change your perspective. And you might want to do it again. And that’s what happened to me. And that if you can get rid of that sorrow and loss,

overwhelming, like there’s nothing there. If that’s how you start, how difficult it’s going to be for you to see anything else.

Dr. Heather Sandison, ND (29:00.468)
Yes, that attachment, letting go and acceptance, right? Which is sometimes easier said than done, but also an invitation, right, to go in that direction. You also mentioned the transformation you went through yourself.

I want to touch on that because this role as care partner can be deeply transformative for both people. And I think that’s sometimes left out, right? I hear over and over again from people who have served as cares partners. There’s a spectrum of experience, but most people wouldn’t give it up for anything. They feel very grateful they got to do it. But there were moments that were torturous. And I’m curious, you mentioned that you’re a kinder, it sounds like you feel like you’re a better version of yourself.

Marilyn Raichle (29:37.356)
Yeah.

Dr. Heather Sandison, ND (29:47.944)
having gone through it. Can you talk about that?

Marilyn Raichle (29:48.355)
Yeah.

Well, raised in this family where emotions were never spoken of, where I was the fourth of five kids and my job was to win. My two older sisters were on the marriage track.

I liked grades and didn’t like boys that much so I was on the career track. So for me everything was about winning and not about listening and not about working together. It was just all about me and winning and I felt alone. with this experience it was the first time I felt where I wasn’t in a competition. That I was just enjoying myself.

The thing about when I would tell people that I would go to assisted living to visit mom to relax, they would just look at me like I was crazy. And it’s because there were no deadlines, there were no rules, it was just the peaceful moment.

Dr. Heather Sandison, ND (31:00.692)
Yeah, it sounds like if there was a challenge, it wasn’t to prove something or to win something or to compete with anyone, or to check a box. It was to connect. It was to connect and express love.

Marilyn Raichle (31:00.92)
them.

Marilyn Raichle (31:06.22)
All

Marilyn Raichle (31:11.244)
Yeah.

When I would give shoulder massages, once Harry, who was at the men’s table, he wanted one. So I went over to the men’s table to give them massages. Harry was interesting because he was eating lunch and I started to give him a massage and all of a sudden these chirps started to appear.

And then the chirps slowed down and it became a song and Harry began to sing. And I kept massaging him and the song got better and bigger. And at a certain point I realized that everyone’s food was getting cold because everybody was just wrapped with the tension. And when I finally, when I stopped,

massaging and he stopped, the entire lunchroom burst into applause. It was just this communal thing.

living with dementia so often lose is the need to be of value. They never lose the need to be of value, but they lose the opportunities. And this was simple, but I once asked the kitchen crew, I said, all those napkins you put out on everybody’s places, could you just bring all of them to me in a big lump and toss them on the table? And they did. And I said to Mom, look at all those napkins, Mom. Would you help me fold them?

Marilyn Raichle (32:48.366)
She just started to fold them up and put them neatly in everyone’s places. And I said, oh, thank you, Mom. You’re now the folder in chief. And then sometimes when she wasn’t looking, I grabbed them all up again, and I threw them up, and she’d do it again. And just that simple little thing of being of value, of having someone say thank you, we forget how rare that is.

all these things that were so abundant in their lives. And so with my experience, I started to slow down and I started to listen and I started to ask questions and I started to enjoy the moment.

I started to share joy with people. Imagine having never really done that in your life and all of a sudden you’re doing it and it’s becoming part of your pattern. I I have to remind myself even now when I get an email, instead of starting it with telling them all about me, what I’m doing, I’d stop and I said, don’t do that. And I asked them how they’re doing first.

I ask questions and I listen and I respond as if to acknowledge what they have told me and how I’m feeling comes second, that it’s not about me. All these simple little things I could have learned years ago, but I didn’t. when mom taught me one thing that was interesting, because she was always teaching me things, you know how you heard that thing about mom became the daughter and I became the parent? mom was always my mother.

and she was always teaching me something. She taught me this one really important thing. Mom began every conversation at Horizon House where she lived with a smile and a compliment. Compliments were really difficult in our family because to accept a compliment meant you thought you deserved it. So in our family growing up, someone gave you a compliment,

Marilyn Raichle (35:01.068)
it was best to change the subject preferably to something depressing. And we all got out of the habit because it was sort of depressing. And so all of a sudden Mother was giving compliments to people and when I tried it, it was like, my goodness, what a nice way to begin a conversation. Again, I learned that from Mom.

Simple things that I, you know, years ago, and this is really interesting, years and years before mom developed dementia, she was living in Horizon House, in an independent living, and I lived in this big house, not far, and she came by one day, and she came into the house because it was sort of open, and she came up to my room and I was taking a nap, and she laid down next to me and told me she loved me.

And I remember crying because I’d never heard that before. And then she said, I guess I should have said that more often. Again, we didn’t talk about it because I was asleep after all. And our life together as care partners unlocked all that love that had been waiting so long to express itself. And so it was just this

from fists clenched to hands open, is how I describe it. People have asked me, they said, well, don’t you sort of resent your brothers and sisters for not spending time with your mother? And I said, I wish they had that opportunity, I wish they could have. They’d be so much happier today, except for one of my sisters who spent years in therapy, so she got there first. But it was,

It was just, and if you listen, if you listen, every single day they’re telling you something that’s worthwhile.

Dr. Heather Sandison, ND (37:06.814)
Sounds like there was almost a path of unlearning.

Marilyn Raichle (37:10.626)
Yeah, letting go, letting go. But then it’s just, once you start listening, once it becomes a habit, once when Mom and I walked out of her apartment, excuse me.

and there was no one in sight. was no one in the hallway. And she turned to me and she said, you know what this means? I said no. She said, we’re the most beautiful women in sight.

Dr. Heather Sandison, ND (37:40.99)
Ha ha ha.

Marilyn Raichle (37:43.01)
that just to have fun, that Mother was having fun. And once I started to observe her outlook, everything changed for me.

Dr. Heather Sandison, ND (37:58.025)
You founded the art of Alzheimer’s, and this really highlights creativity in people living with dementia, which I think doesn’t even cross a lot of people’s minds. Why do you think it is that creativity remains so accessible, even as our memory, and for a lot of people, their identity shifts?

Marilyn Raichle (38:03.896)
Yeah. Yeah.

Marilyn Raichle (38:16.408)
Well, number one, think that nobody gets, abandons their need for accomplishment. That to be able to paint or to do anything, to sing, dance, that you take pride in your accomplishments.

that it is, and it’s fun. It’s fun. We forget when we think of people as these poor, sad creatures who just need to be taken care of, we forget their need to be creative, their need to have fun, their need for accomplishment, their need for pride. They’re just like us. This is what I call enduring personhood, that there are certain things that we as human beings

never ever let go. And these are all things that need to laugh and the need to be have friends, the need to have accomplishment, the need to be of value, the need to love and to be loved. These are all things we share and always will to the day we die.

Dr. Heather Sandison, ND (39:27.668)
As I was reading about you preparing for this conversation, I couldn’t help but be extremely curious about your mom’s art. Where can people see it?

Marilyn Raichle (39:38.036)
If they go, well, we have a website called the Art of All… Let’s see. The Books website is…

Don’t Walk Away dot net so they can see it there.

If they order it on Amazon, can scroll down and see some of the art. But it’s not widely available everywhere. But it’s fabulous. And I have every painting except for a couple that I gave away. But they’re all just so interesting. I mean, just…

The only painting that she never transformed were strawberries. And I think it’s because we went strawberry picking as kids every summer and would pick tons of strawberries. And so when mother saw a strawberry, she painted a strawberry, which was funny. But it’s just…

Marilyn Raichle (40:47.522)
the ability to see that the creativity is still there and the ability to share the joy of that is wonderful. One of the things that she said to me really late, she was probably 95 and we were playing Scrabble, by that time we were, because mom was so competitive, when she couldn’t make a word we would just add up the scores, see had more scores on their tiles, but

Once she had these tiles and she was trying to figure out a word. She said, is dog a word? And then she stopped and she thought and she looked at me and she said, you know, sometimes your brain just gets in the way. And then she made jewel on the triple.

Marilyn Raichle (41:38.785)
Again, she was always surprising me. Always surprising me. And if you’re open to that, it’s so wonderful. And in fact, and this is funny, this is when mom died, about three days after that, I went back to assisted living because I wanted to be around all my mothers.

Dr. Heather Sandison, ND (41:41.841)
Yeah.

Marilyn Raichle (42:04.662)
Ruby, this wonderful woman from Atlanta with this fabulous accent, and she and Evelyn, who was 104, 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? I said, why? And she said, because she tried to eat it.

And there I was, I was back where I could be happy.

Dr. Heather Sandison, ND (42:33.626)
Uh-huh. Surprised and laughing and playing.

Marilyn Raichle (42:37.1)
Yeah, and just enjoying them. it’s it’s just, I mean, and if you’re open to it, if you’re open to it. I was once being interviewed by somebody and I was telling stories about mom and how happy it made me. And when I finished, she said, yes, but isn’t it awful? And I said, well, you would think so.

But then I would tell some worse stories and then at the end of that she said, yes, but isn’t it horrible? And I thought, if you’re deeply committed to the fact that this is awful, I’m not going to be able to change your mind. But they’re there.

Dr. Heather Sandison, ND (43:09.001)
Yeah

Dr. Heather Sandison, ND (43:16.974)
Well, you make this really powerful distinction in your book about living with versus suffering from dementia. And I think that’s the concept you’re getting at here. So maybe unpack that. think we’ve talked about elements of it, do you have a list of when you distinguish between them of what living with versus suffering from looks like for both patients and caregivers?

Marilyn Raichle (43:24.162)
Yeah. Yeah.

Marilyn Raichle (43:39.96)
Well, I think it’s pretty simple. I mean, it’s how we live. are, instead of spending every day, I hate my life, sadness and sorrow, you’re just living. You’re encountering every aspect of your life the same way we are.

and you’re not spending all your time suffering. And that it’s more for us that they’re living with. So just know that this is about us being able to understand that these are people who are alive. Human beings who are alive, not sad creatures who are suffering. And that’s all they are. It’s really for us.

Dr. Heather Sandison, ND (44:22.836)
And we have some agency in how we show up, right? I think that’s a big part of your message and also some responsibility, right? How we walk into the room, if we are stuck in this idea that they are suffering from, that we have so much loss, that they aren’t the person they used to be, then that shifts.

how the person with dementia is going to respond to us and whether or not they’re combative, whether or not they’re engaged, whether or not they’re creative, that creativity can be expressed, whether or not they’re laughing and enjoying life. And so I think that there’s both agency and responsibility. How do you think through that?

Marilyn Raichle (45:00.808)
Well, this goes to one of the first things I learned, is that I was talking to Mom.

and I was telling her about my job at that point, was not fun. And I started telling her about it, and then I realized I could just feel her pulling away. She was absorbing my stress. She was absorbing my unhappiness. And I recognized it, I immediately stopped, and I changed the conversation to the food we were going to have for dinner that night.

was the last time I cried because I wasn’t being able to confide with mom anymore about my sadness, but she’s going to pick up on all those emotions. How we present ourselves, they’re going to absorb. If we think of them as sad creatures, how do you think it makes them feel?

Dr. Heather Sandison, ND (45:53.385)
Now we’re projecting that onto them. And you also distinguish between care partner and caregiver. Talk me through the language there.

Marilyn Raichle (45:58.573)
Yeah.

Marilyn Raichle (46:02.03)
Well, and I don’t mean to in any way impugn every caregiver out there, but for so many caregivers, they are taking care of a person who is conceivably sad, a person who is in need of help, not as an equal human being, but as a… I’m going to take care of you. Don’t worry about it. I’ll take care of you. As opposed to a care partner,

then together, together we’re working together and together we’re building a life.

Dr. Heather Sandison, ND (46:39.784)
Yeah, it’s one direction rather than collaborative.

Marilyn Raichle (46:42.284)
Yeah. Yeah. And it was for me really important because I hadn’t been seeing her as an equal human being. But we were. And that she was as joyous and happy and competitive and funny as she always was.

Dr. Heather Sandison, ND (47:04.116)
Potentially more so, it sounds like.

Marilyn Raichle (47:06.434)
Well, yeah, she was teaching me at this point. And she was just funny. mean, it’s just really simple things. And again, it goes to listening. One day, she said, you know, when you’re ever feeling kind of blah, like life isn’t worth living, look at this. And she held up this tattered old copy of Better Homes and Gardens. And she said, it’s just wonderful.

Marilyn Raichle (47:37.943)
Mother was finding happiness and joy in places I wasn’t even considering. And that’s when I thought, okay, I’m going to calm down. I will relax. That mom’s got my back. Mom was just, every single day, there was something like that. Just listening to her, just being with her. And it was just, it was fabulous.

I have a friend who was a caregiver, care partner with her husband for years, and it was really hard because she had kids, she had a job, and it was hard. She said, what I like about your book is the word hope. I have a harder time with joy. She said there wasn’t as much joy in my life as you had, but the word hope is really important.

we can change our understanding of dementia from despair to hope. To hope that they’re still here. To hope that they can live happy lives. To hope that they can thrive. To hope that we as a society can understand that they deserve and need our support and their care partners.

Dr. Heather Sandison, ND (49:01.828)
You as a caregiver transforming into a care partner, experience those feelings of overwhelm and isolation and even resentment at times. What would you say to someone who’s at that stage, who’s just beginning this journey maybe and having some of those emotions come up?

Marilyn Raichle (49:10.908)
yeah.

Marilyn Raichle (49:20.386)
Well, think, number one, need, I mean, I always say this, that they need to look at their community, their local senior centers, for the activities that exist, for activities for their loved one and also for themselves, that they need respite. They need respite.

More caregivers are in danger of dying early because they’re exhausting themselves and they’re not giving themselves support. And I think that we’re lucky in Seattle because there so many things. are memory cafes and they’re increasing everywhere. Memory cafes and senior centers and all sorts of programs. There dance classes. There’s just, we even have one program called

momenta that has a daily newsletter that tells you all the activities that are happening that are free in your neighborhood and that it is important for caregivers to let go, to not ask those horrible questions like do you remember or don’t you remember, but also to give themselves opportunity to relax and to rest. And I know they’re busy but

even if you can take five minutes every so often. relax, relax. My niece was starting to encounter that. She wanted to become the principal caregiver for her father who’s developing dementia. And her father lives in Squim, Washington, way over here, and she lives in New York, so it would be exceedingly difficult. I said, you have to take care of yourself. Because she was becoming exhausted, I said, you have to take care of yourself.

And ask for help. Ask for help. Ask for guidance, ask for help. But ask for help. That’s where senior centers can be very valuable, is that there are people there who can help.

Dr. Heather Sandison, ND (51:20.954)
You wrote the book Don’t Walk Away, and this is a really personal act. What compelled you to share your story, and what do you most hope readers get when they get a copy of it?

Marilyn Raichle (51:34.958)
Well, the main reason because the art was having such a powerful impact on people. this is a story. It’s an invitation to take a walk with me and Ma and experience a life.

Dr. Heather Sandison, ND (51:50.142)
full of hope and creativity. Yeah.

Marilyn Raichle (51:51.097)
person living. But also just a life of people, someone living, tools, laughter, the experience of laughter, of hope, but also there are all sorts of lessons that it can be.

life-changing, but it can also be incredibly challenging. it’s, it’s, the art is fabulous and the, it’s, all these things that I wrote down in my nine years with mom, all these stories of me and mom, but they’re all illuminated by her artwork. And so it’s just, it’s just a book of hope. And it’s, it’s, and I hope that people

I people will take heart from it to realize that they can live, that they and their loved one can live with connection to their communities, active. But I also hope that it can reach people to say, these are people who deserve our help. That it’s not something to be afraid of.

This is how my experience, might not be yours, but this was my experience. Imagine if all these wonderful people, I have a sister once who said, Mom left us years ago. And I said, well, if Mom left, who’s there? And I would suggest it’s somebody well worth getting to know. It was for me,

It was just, it was life changing for me. And I don’t think it was life changing for mom, but I know she had fun. She had fun.

Dr. Heather Sandison, ND (53:40.126)
Here, mom, you mentioned she passed. I’m curious about that transition out of that care partner role.

Marilyn Raichle (53:46.319)
It was hard. Well, first of all, Mother made me laugh on her deathbed, which is not easy to do. She grew up in this banking family during the Depression, they hated Franklin Delano Roosevelt. Every time she heard his name, she’d go, we didn’t like him. So her blood sugar had spiked to 600.

She’s in a coma. She’s two days from death. And my brother and sister and I are standing around her. We’re singing to her. We’re telling her we love her. And I mentioned her dislike at the Roosevelt Hotel. And mom flinched.

Dr. Heather Sandison, ND (54:24.571)
Wow.

Marilyn Raichle (54:25.492)
And I knew she could hear me and I knew she could understand me. So for the next two days, I sat next to her and held her hand and talked. We had a memorial service, which again, in our family, was like no funerals, no memorial services, no tears. Scottish Calvinists. And so when I got up to speak, the first thing I said, because her younger sister Louise and her cousin Frank were in the audience and

I said, I realize that this is showy because Mother considered memorial service as showy. And they left and they both went like this. And then I realized I was about to cry. And I couldn’t cry in front of them. just couldn’t. There were no tears. But with every ounce of my being, I pushed those tears away. And then two days later, I went back to assisted living.

And I found another. Evelyn became my new mom. She was 104. She was wonderful. We had a fabulous time and. And she was at 105. She was in hospice and. I went up to her once and I. Melt down next to her and I just said. I love you Evelyn and she opened her eyes and she said life is so wonderful.

And that was the last I heard from Evelyn. And after that, I had to make the decision to reenter the world, which was really hard because it wasn’t nearly as much fun, not nearly as much as peaceful as my family and assisted living. But that’s when I was working hard on the art of Alzheimer’s. And then I met this wonderful man named Richard Ferry who

sent me an email and he said, I already have this idea.

Marilyn Raichle (56:30.766)
and it was about Maud’s Awards. Maud’s Awards is a program when his wife developed dementia in 2013 and he didn’t know what to do. had no idea, like so many people. And then he thought, because he’s a man of means, he said, well, perhaps if I do this award program. And so every year we give away $100,000 for innovations in Alzheimer’s care.

And these are for individuals and organizations, for-profit, non-profit, anybody who has enriched the lives of people who living with dementia. not a grant. They can apply. Applications are currently open. They go to modsawards.org. And in a simple, there are six questions. And we’re in our seventh year now. And so this is a wonderful thing to be able to do.

So, Alzheimer’s world became my new world. And Maud’s Awards is a fabulous thing to be able to do as one ages to be able to do good.

Dr. Heather Sandison, ND (57:37.64)
to have an impact. What brings you joy at this stage of life?

Marilyn Raichle (57:38.979)
Yeah.

Marilyn Raichle (57:44.973)
Well, aside from my job, baking. And the reason it brings me joy is that it used to be really serious that growing up I didn’t like to shop, so I would make cookies for my brothers and sisters. And then it started to grow as people started to taste the cookies, because these are not average cookies. These are really difficult cookies.

Marilyn Raichle (58:16.92)
Three years ago I made 2,000 cookies using 80 pounds of 47 different kinds of cookies. But the thing that’s fun about them, and I don’t make as many now because that’s absurd, but is giving the cookies to people. People are so happy to receive them.

So that makes me happy. In fact, now that I’m no longer making thousands of cookies, but even so I make cookies all the time and I give them to my neighbors and they’re all really happy to receive them. So that makes me happy.

Dr. Heather Sandison, ND (58:48.966)
Marilyn, you walk around giving out cookies and massages. mean, who wouldn’t want to hang out with you? Marilyn, this conversation has been really powerful as a reminder to everyone I know that’s out there that even in the face of something challenging and horrible,

Marilyn Raichle (58:52.238)
No massages anymore, but cookies, yes.

Dr. Heather Sandison, ND (59:08.942)
And just one of the most difficult phases of life, like facing dementia, there is still so much opportunity for connection and creativity and yes, even so much joy and laughter. And your work and really hearing your transformation, it invites all of us to shift from that fear and withdrawal into presence and an openness to the possibilities.

That is something I wish more people got a chance to hear. So thank you, thank you, thank you today for not walking away, for your stubbornness and for showing the rest of us just what becomes possible when we choose to walk with that person, with our loved one. Thank you, thank you for your time and for everything that you’re doing to have such a big impact on this space. I’m really grateful for the work you’re doing.

Marilyn Raichle (59:37.784)
Yeah.

Marilyn Raichle (01:00:00.012)
Thank you so much. was pleasure being here.