March 11, 2026

What if Dementia isn't the end of Connection, but an Invitation to a Different Kind of Presence?

What if dementia isn’t the end of connection, but an invitation to a different kind of presence? We sit down with author and advocate Marilyn Raichle, whose book Don’t Walk Away, A Care Partner’s Journey chronicles how her mother’s unexpected paintings—and later, simple rituals of song and touch—reframed Alzheimer’s from pure loss to a space where joy can still flicker. Tina opens up about caring for her mom with early onset Alzheimer’s, the heartbreak of losing language and mobil...

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Season 4Self HelpMental HealthLoveFearTraumaOvercomingGriefGuestsInspirationalHelping OthersPhysical Health/Wellbeing/HolisticFamily Dynamics

What if dementia isn’t the end of connection, but an invitation to a different kind of presence? We sit down with author and advocate Marilyn Raichle, whose book Don’t Walk Away, A Care Partner’s Journey chronicles how her mother’s unexpected paintings—and later, simple rituals of song and touch—reframed Alzheimer’s from pure loss to a space where joy can still flicker. Tina opens up about caring for her mom with early onset Alzheimer’s, the heartbreak of losing language and mobility too soon, and the harsh reality of fighting insurers for basics like a wheelchair and a shower chair. Together we face the unglamorous math of care, the loneliness when friends don’t know how to help, and the tiny moments that make it all bearable.

Marilyn shares practical, dignifying ways to connect when memory shifts: lead with something your loved one enjoys, lower the pressure, and aim for five minutes of shared joy. We explore emotional memory versus cognitive memory, how music can bridge silence, and why a gentle introduction—Hi, it’s your daughter—can ease anxiety. Tina brings vivid, grounded strategies for caregiver survival: building a circle of support, moving your body to metabolize anger, using counseling or even short AI check-ins for relief, and letting kids help in small, safe ways that teach empathy.

We also look forward. As executive director of Maude’s Awards, Marilyn highlights innovations in Alzheimer’s care that center creativity, purpose, and care partner well-being. If you’re searching for Alzheimer’s caregiver tips, dementia communication tools, or resources that go beyond platitudes, you’ll find real-world steps and a renewed lens: people living with dementia remain fully human—worthy of patience, presence, and joy. Subscribe, share this with someone who needs solidarity today, and leave a review with the moment in your own journey that helped you feel connection again. Your story might be the spark another caregiver needs to hear.

Marilyn's website is – Maude's Awards

To get her book go to Don't Walk Away: A Care Partner's Journey: Raichle, Marilyn, Raichle, Jean: 9781969682407: Amazon.com: Books

Visit Real Talk with Tina and Ann to get all of their episodes.

Support the show

@Real Talk with Tina and Ann

Chapters

00:08 - Welcome & Marilyn’s Introduction

01:20 - Tina Reads A Moving Passage

03:09 - Caregiving Realities & Early Onset

05:03 - “Walk Away” To Care Partner

08:20 - Grief, Memory, And Art As Bridge

12:05 - System Failures And Cost Of Care

16:20 - Finding Hope Without Easy Joy

20:28 - Small Moments, Songs, And Touch

24:10 - Caregiver Self Care And Support

28:08 - Presence When Words Are Gone

31:45 - Role Reversal And Personal Change

35:20 - Emotional Connection Over Cognition

38:00 - Maud’s Awards: Invitation To Apply

40:20 - Closing Reflections & Hope

Transcript
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00:00:08.240 --> 00:00:10.720
Welcome back to Real Talk with Tina and Ann.

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I am Tina.

00:00:11.919 --> 00:00:13.199
And I am Anne.

00:00:13.439 --> 00:00:16.160
Well, today we are joined by Marilyn Raikel.

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She is author of Don't Walk Away, A Care Partners Journey, a deeply personal and powerful reflection on love, identity, and connection in the face of Alzheimer's.

00:00:26.800 --> 00:00:32.320
Marilyn's life shifted when she became a caregiver for both of her parents as they developed dementia.

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Inspired by her mother's unexpected artistic expression after her diagnosis, she founded the Art of Alzheimer's, celebrating the creativity and dignity of people living with dementia.

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She now serves as executive director of Maud's Awards for Innovation in Alzheimer's Care, supporting practices that enhance the lives of those living with Alzheimer's and their care partners.

00:00:54.479 --> 00:01:02.240
Now, through her writing and advocacy, Marilyn reminds us even when memory changes, a person we love is still very much there.

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And Marilyn, thanks so much for joining us today.

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We very much appreciate you and your story and putting it on paper for everybody to read and being here for our listeners.

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We are excited to jump into this book and life experiences that you have gone through.

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And I want to paraphrase in part something that you wrote in your book because it touched my heart so much.

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You said this about your mom.

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Her paintings opened up my eyes, heart and soul, to a woman who still had so much to say through her art.

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I moved past the fear and everything I thought I understood about Alzheimer's.

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I saw not an empty shell lost in a fog, but a joyful, creative mind still alive with possibility.

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I learned to let go of who I believed she used to be and embraced the woman present with me in every moment, not suffering from dementia, but living with it in that space, without hurry, without regret.

00:02:00.480 --> 00:02:07.599
Our visits became essential, rather than dutiful, filled with laughter, discovery, and what she called just delightful.

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This book tells a story of building a life together in those fleeting moments, learning to navigate late-stage dementia side by side.

00:02:16.240 --> 00:02:18.879
It has been the most rewarding journey of my life.

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Thank you, mom.

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So thank you for letting me read that.

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And I really think it gives the people who have Alzheimer's the humanity that they deserve.

00:02:28.879 --> 00:02:36.319
And for those who are caring for them as well, as our beautiful Tina is doing with her mom.

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What I hear in your words is something so important that people living with Alzheimer's are still here.

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And that connection doesn't disappear.

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It changes.

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So today is just not an interview, it's a shared space.

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And Marilyn, as beautiful as your experience is, I know that is not what a lot of caretakers experience.

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And I appreciate your experience and our listeners will too, along with our co-host, Tina, as she has gone through experiencing this disease with her mom.

00:03:09.520 --> 00:03:21.599
Well, Marilyn, one of the things that touched me the most, and I don't even think I can get through the question, is you called this the most rewarding journey of your life.

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I'm not there.

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I'm not there on that journey with my mom.

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And so it means so much to me to get to talk to you today because this is not going to be easy for me.

00:03:33.919 --> 00:03:39.520
I am very much walking the caregiver path right now and have been for six years with my own mom.

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She was diagnosed with early onset Alzheimer's at the very young age of 59, and it crushed me.

00:03:47.120 --> 00:03:49.919
She has progressed to the late stage so fast.

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I am her secondary caretaker.

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My dad is the real hero here.

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And so when I say I appreciate you writing this book and coming here today, I really mean it.

00:04:00.479 --> 00:04:04.479
The topic of Alzheimer's and dementia, it is so layered.

00:04:04.639 --> 00:04:08.159
And I want to step into your personal experience a little more, Marilyn.

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You have spoken so beautifully.

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Like I said, about this being a rewarding journey.

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I'm a little jealous, to be quite honest.

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If I have to be in this place, I wish I could say the same thing and I can't, but I love that you can.

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And my hope is that you'll be able to give perspective.

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So wanted to talk about that and want to talk about you've spoken so beautifully about your mom's paintings through this disease and how they became a doorway to connection instead of loss.

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So I'm curious if you can talk about these things and also maybe how long it took you.

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And I know that's it's a different time for everyone, but how long did it take you to look beyond the fear, the dread of this disease when it comes to this diagnosis to get to that place of peace?

00:05:03.040 --> 00:05:04.480
Well, first of all, thank you.

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Thank you very much.

00:05:05.519 --> 00:05:07.040
Thank you both, but thank you, Tina.

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I know you've had a completely different journey than I.

00:05:10.160 --> 00:05:18.399
And I would like to just say at the outside that while my family considered me the home caregiver, I was not a home caregiver.

00:05:18.639 --> 00:05:22.240
Mom was living in a really good continuing care facility.

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That those of you who are home caregivers, juggling wives with jobs and children and your loved one, it's really possibly the hardest job on the planet.

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And you're operating without a net.

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And so I am exceedingly interested in hearing your story and your story about your mom.

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And what's her name?

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Cindy.

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Cindy, thanks.

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Um, and so with me, mother, there was Alzheimer's on in dad's side of the family a lot.

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Um, some in mom's.

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Um, mom told us when we were kids, or five of us kids in the family, she said, When we get Alzheimer's, I want you to walk away.

00:06:03.439 --> 00:06:05.199
There's not going to be anything you can do.

00:06:05.279 --> 00:06:06.959
We're going to be in a safe place.

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Don't sacrifice your lives for us and walk away.

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And we all thought, okay, that makes sense.

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Sure.

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And dad, who was developing Parkinson's, um, was pretty much her dealing with her daily care.

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Um, and we pretty much, to our my great chagrin, disgrace, sadness, pretty much left him alone.

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When I came back from graduate school in 2006, there were no jobs because it was the depression or recession.

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And my family said, okay, we're gonna pool our resources, we're gonna keep you afloat, you're gonna be the family caregiver.

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Well, and I didn't really have a choice.

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That was my new job.

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I had no interest in doing it.

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I knew nothing.

00:06:52.639 --> 00:06:59.040
Um and it was but there I was, um stuck.

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And my resistance was really strong when I was I was there, I would make sure they went to doctor's appointments.

00:07:08.000 --> 00:07:10.319
I did my best to keep them engaged.

00:07:10.480 --> 00:07:15.120
Um, but the word walk away was always in the back of my mind.

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Um and this it this went on for about two years.

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Um, I finally slowed down and I came to the realization that mom, who considered herself dad's caregiver, um wanted the best for dad.

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Dad wanted the best for mom, and I wanted the best for both of them.

00:07:34.319 --> 00:07:36.959
So what we had in common were shared needs.

00:07:37.120 --> 00:07:43.600
Um, so I slowed down, started to listen, started to do a better job, but still not a great job.

00:07:43.839 --> 00:07:49.920
Dad died at 89, and mom and dad had been best friends for 72 years.

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And when he died, we were all in the room with him.

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Mom was asleep.

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Um, we thought should we wake her up?

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Uh, because there was a rule in the family never cry.

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Never cry.

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Um, and we woke her up, and I've never seen tears like that, ever.

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Um, she just sobbed.

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And we finally got her back to sleep.

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And the next morning she remembered dad was there.

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Dad was her best friend, and she talked about their life together.

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And that second day I got there early and she remembered.

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And the third day I got there and she said, I just want to be with your father.

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And I, without thinking, 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.

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And she laughed and she said, Well, that's life.

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And from then on, she put it in this little box.

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She thought about him all the time.

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She would say, Oh, mom, 40 times a day.

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But she started to re-enter the world and and and all make friends.

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And I took her to a painting class because she was so boring.

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And she didn't expect anything because she thought painting was stupid.

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And um, even though she played the piano and everyone played instruments and but art, no.

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So I took her to this painting class and her painting was amazing.

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It was just beautiful, and I was stunned.

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Mother said she didn't do it, it wasn't hers, but I was stunned.

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So I kept taking her to this painting class.

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And every time I would show the painting to someone, her mom's paintings, the the reaction was always the same.

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It was always, I had no idea.

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That the art just I used to say to people, Alzheimer's is scary, art isn't.

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So if you start with something joyous and happy, then then people can start to relax and then they can actually talk to you.

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But but if you just start with Alzheimer's, it's just too scary.

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So that's when I started doing the art of Alzheimer's and sharing her art with as many people as possible.

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Um and then one day her art to me looked like it was deteriorating.

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All these same scratchy lines, same colors.

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And I thought, hmm.

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So I got there early on painting day.

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And because I this point was only going really once a week.

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And I got there early on painting day, and we did everything she liked to do.

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We played Scrabble, which we did every day until she died.

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Um, we looked at the view, we took a walk, and then I took her to the class, and her paintings completely changed.

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All these warm animal images started to appear in different colors, and that's when I went, oh, I see.

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I have a role to play in this.

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We're partners, and that's when we became care partners, and and together we were building a better life for both of us.

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And for me, because I had the luxury of making this decision, the best decision I've ever made.

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It made me a better person, made me a happier person.

00:11:00.240 --> 00:11:07.200
I learned mother was still teaching me, and I learned from long, she gave me a blueprint for how to live a life.

00:11:07.519 --> 00:11:10.960
And that so I lived with her for nine years in that respect.

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And and visiting her was no longer something I had to do.

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It was something I needed to do.

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It was important, it was part of my life.

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And and I am very, very lucky because I completely, and one reason I'm really interested in hearing your story is that people who are home caregivers need our support.

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And I think it's important for all of us to know how we can help make your lives better, their lives better.

00:11:42.879 --> 00:11:45.600
Yeah, thank you for for noticing that.

00:11:46.080 --> 00:11:55.600
Um, you know, one of the sad parts about our story is that mom is so young, which means dad is also so young, and they are the same age.

00:11:55.919 --> 00:12:03.759
So there isn't, there wasn't, still isn't, uh, much help available to them because of their young age.

00:12:03.919 --> 00:12:10.480
My dad still has to work, and my mom is such a late stage that she can barely say a few words.

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She cannot walk on her own.

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You know, we have to feed her, we have to do all of the all of the things that you do really for a baby.

00:12:19.519 --> 00:12:31.120
I think last year when it really got under my skin, we needed a wheelchair from my mom, and we couldn't get it covered by insurance.

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And I sobbed and I thought, why is this?

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We couldn't even get a wheelchair from my mom to get her out of her door, down the sidewalk, or even the grass, I should say, and into her vehicle, and then to transport her from the car into her doctor appointments wasn't even covered.

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And a neighbor was over and I was just venting to her about that.

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And do you know the next day what showed up on my front porch?

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A wheelchair, a brand new wheelchair.

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We couldn't get a shower chair for my mom covered either.

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So to say we've gotten zero help is not a lie.

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I was told that from our uh family liaison, if you will, that best thing we could do is we could just set up cameras in the home and then wait for something to happen.

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And that was the advice because, quote, it would bankrupt the system if they were to help everyone who was suffering in this way.

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And I also balled my eyes out and maybe got angry on the phone.

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And I thought this is all the help that we have here.

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It's interesting for me because I'm raising three young boys and I have two jobs.

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I have a husband.

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I have a wonderful, caring husband, and I feel like I am experiencing all of my last firsts with my children, or my youngest, I should say.

00:14:01.200 --> 00:14:07.600
And I'm also going through all of my last lasts with my mom.

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And I'm trying so hard to take it all in, but it's a lot.

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And I'm a big feeler.

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So you couple that with my self that's that's just this big feeler.

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I'm all or I'm nothing.

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And I'm clearly all in in this case.

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And so that has been one of the most challenging things is still working and my dad too, still working.

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He's a small business owner, he has to pay their mortgage, still working and still trying to find care for my mom because again, it's paid for out of pocket.

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She's so young.

00:14:42.879 --> 00:14:45.840
And it that part has been quite a challenge.

00:14:46.080 --> 00:14:59.279
And I know later on in our interview, you know, I wanted to kind of talk about how it's also been a challenge for me because I'm so young that I don't have any friends who can relate.

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You know, I feel like not only am I alone in what's happening with my mom, but I feel like I've lost my dad too.

00:15:07.200 --> 00:15:10.480
And I, you know, friends don't know, it doesn't make them bad people.

00:15:10.559 --> 00:15:11.759
They just don't know what to do.

00:15:11.840 --> 00:15:14.720
So they do nothing, which is not the right answer.

00:15:14.960 --> 00:15:22.480
And so I just find myself in this place trying to just show my boys how to love and love well.

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And so it's been such an emotional ride for me.

00:15:26.879 --> 00:15:36.320
I'm wondering what it's been like, you know, what if you can talk about maybe, you know, you were daughter first and then care partner next.

00:15:36.480 --> 00:15:46.480
And did you kind of feel similarly at times, like alone or maybe not understood or or anything like that?

00:15:46.799 --> 00:15:50.559
Well, you have to understand I came from a family of Scottish Calvinists.

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Emotions were an emotional indulgence.

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We were trained, I was certainly trained not to feel much.

00:15:56.320 --> 00:15:58.799
Um, my whole purpose in life was to win.

00:15:59.039 --> 00:16:04.639
I basically ignored anything that was unpleasant and pretended that it wasn't there.

00:16:04.799 --> 00:16:06.480
You sound much healthier tonight.

00:16:06.879 --> 00:16:09.279
Um But yeah, you still found joy.

00:16:09.440 --> 00:16:10.720
Joy is an emotion.

00:16:10.960 --> 00:16:11.840
Yeah, it's true.

00:16:12.000 --> 00:16:12.480
It's true.

00:16:12.639 --> 00:16:20.720
And it was with mom, it was it, it's only when her the paintings opened up a different image of mom.

00:16:21.039 --> 00:16:24.559
It was interesting when I so I have a question for you that I'll get to.

00:16:24.799 --> 00:16:29.919
Um when I met this man once and he was telling me about his wife who was in a nursing home.

00:16:30.080 --> 00:16:34.720
And he said, When I see her, she kisses and she tells me she loves me.

00:16:34.879 --> 00:16:37.840
And when I look in her eyes, there's nothing there.

00:16:38.000 --> 00:16:39.519
And I leave in tears.

00:16:39.679 --> 00:16:45.679
And I was I thought, why couldn't he see what I mostly agree would have, which is a woman with something to say.

00:16:45.919 --> 00:16:49.519
All he could see was sadness and loss.

00:16:50.159 --> 00:16:55.039
And he wasn't experiencing it on a daily visceral basis the way you are.

00:16:55.279 --> 00:17:03.440
What changed for me and why the painting was so important and so powerful is that we were sharing joy.

00:17:03.600 --> 00:17:11.839
When mother was doing something so and enjoying herself so much, when she would start to paint, she would dig into home.

00:17:12.480 --> 00:17:14.799
And she was enjoying something so much.

00:17:14.880 --> 00:17:23.680
And when you see somebody enjoying something, you see a side of that person emerge that you thought was gone because they're having fun.

00:17:24.000 --> 00:17:28.160
And if you allow yourself to share joy with someone, then you can share that joy.

00:17:28.319 --> 00:17:29.920
So that's what changed me.

00:17:30.079 --> 00:17:32.799
This I was able to share joy with mom.

00:17:33.359 --> 00:17:36.079
One person said to me, Well, how can I do that?

00:17:36.160 --> 00:17:37.200
I don't have a lot of time.

00:17:37.279 --> 00:17:40.319
And I said, Well, just try to give yourself five minutes.

00:17:40.480 --> 00:17:48.559
Do one thing that both of you like to do and do that, and then you'll see that person being happy and you might want to do it again.

00:17:48.720 --> 00:17:54.720
And I know it's all so I I come at this from a privileged point of view where I had that time.

00:17:54.960 --> 00:18:16.240
When I made that leap into being able to see mom for who she was, and being able to see all of her companions in assisted living for who they were, then my attitude towards dementia was no longer, because I was raised to think it was like a death, actually worse than death, but that changed.

00:18:16.400 --> 00:18:23.039
Now I was seeing them as people, as people enjoying themselves, and that I played a role in helping them to do that.

00:18:23.200 --> 00:18:26.400
I had that great luxury of being able to do that.

00:18:26.559 --> 00:18:38.880
But I think, and the question I have for you is why do you think there was so much resistance to helping, to giving you a wheelchair, to giving you um the things you needed?

00:18:39.119 --> 00:18:41.200
Why do you think there's so much resistance?

00:18:41.359 --> 00:18:50.799
I think it's because if we don't think these are people worth caring about, we don't think these are people whose lives are worth living, then why should we bother?

00:18:51.200 --> 00:18:53.519
I think that's probably true.

00:18:53.680 --> 00:18:57.839
Uh, and like the lady on the phone told me, it would bankrupt the system.

00:18:58.160 --> 00:19:03.759
And so it all comes down, uh most things in life might come down to money.

00:19:04.000 --> 00:19:07.200
And um I think you've hit the nail on the head.

00:19:07.359 --> 00:19:20.480
And I think the cost to care for these people um who are not at any fault of their own who got this disease, it I think you're exactly right.

00:19:20.640 --> 00:19:21.039
Why?

00:19:21.200 --> 00:19:25.279
And and it's like, but we don't know how much time we have left with them.

00:19:25.519 --> 00:19:29.519
And so why wouldn't we want to make it the best for them?

00:19:29.680 --> 00:19:36.160
I mean, I I it's it's a it's a great question because I've wrestled with that.

00:19:36.880 --> 00:19:43.359
And I think the most simple answer is money, but I think what you said is spot on.

00:19:43.839 --> 00:19:53.200
I mean, one reason I wrote the book was basically to ask people to take a walk with me and mom and to experience a life with dementia that was happy.

00:19:53.440 --> 00:20:00.720
And I have a friend who is in a situation similar to yours, not quite as extreme, who was taking care of her husband.

00:20:01.039 --> 00:20:05.839
And she said when she read the book, she said, I like the word hope.

00:20:06.079 --> 00:20:10.799
I have a harder time with joy because I wasn't experiencing joy.

00:20:10.960 --> 00:20:21.680
But it's the image of a hopeful future of dementia care that I care about, and that I want people to understand what that means and how they can help.

00:20:21.839 --> 00:20:31.039
I was talking to someone, you know, once, and and I said, you know, number one, we have abandoned everybody who's living with dementia, care partners, and those who are living with it.

00:20:31.279 --> 00:20:37.200
Getting into assisted living is exceedingly in expensive, even for the not so good ones.

00:20:37.680 --> 00:20:51.920
And that we should be paying home caregivers a wage that will enable them to have respite and enable them to get the things you need to bring joy and peace into your loved ones' life.

00:20:52.480 --> 00:20:58.480
That is absolutely all my dad and I want that we have been unable to get.

00:20:58.960 --> 00:21:06.960
And the the fact of the matter is for us, we're not gonna trust just anyone with my mom, you know, or with you know, my dad's wife.

00:21:07.119 --> 00:21:11.200
And that becomes hard to to pick and choose because you do hear the horror stories.

00:21:11.279 --> 00:21:17.119
And, you know, as long as we can, we don't uh honestly, we couldn't afford to have mom in a facility.

00:21:17.279 --> 00:21:17.839
We couldn't.

00:21:18.000 --> 00:21:20.079
And so they've horribly expensive.

00:21:20.160 --> 00:21:25.680
I mean, mom was at the be at the end, and she was in it, it's not as expensive as many.

00:21:25.839 --> 00:21:30.480
She was at level five of care, and she was paying uh sixteen thousand dollars a month.

00:21:30.720 --> 00:21:31.519
Who has that?

00:21:31.759 --> 00:21:35.279
No, it's especially when my dad has to also live.

00:21:35.440 --> 00:21:38.559
You know, he's so young on on top of that.

00:21:38.720 --> 00:21:41.519
You know, I it's funny you mentioned the word hope.

00:21:41.680 --> 00:21:43.119
Hope is my word.

00:21:43.279 --> 00:21:55.839
It's a word for years that I like to buy these little wooden letters, these little wooden things that sit on my windowsill, and I have several of the word hope, um, picture frames of the word hope.

00:21:56.079 --> 00:21:59.519
And I think hope is what's pulled me through many, many times.

00:21:59.599 --> 00:22:07.839
But The question I've wrestled with is yes, no, there's been no joy, you know, in in the journey.

00:22:07.920 --> 00:22:18.880
There, there have been moments of maybe there, I always try to keep the hope, and there have been just brief moments maybe of there's mom, and then it's gone.

00:22:19.039 --> 00:22:32.720
So I guess what I'm trying to ask you is do you have any thoughts or insight into how to think more positively, if that's even the right word, about disease when it's it's so progressive?

00:22:32.880 --> 00:22:35.599
I mean, my mom cannot hardly say any word.

00:22:35.759 --> 00:22:42.880
She cannot walk by herself, she cannot feed herself, she cannot do the basic things that we probably take for granted every day.

00:22:43.039 --> 00:22:46.640
The fact that we know that a fork goes in our mouth is a gift.

00:22:46.799 --> 00:22:48.400
And we don't think about that.

00:22:48.559 --> 00:22:54.880
And so, you know, I try to give myself grace, but I also want to learn if there is something I can do.

00:22:54.960 --> 00:23:01.279
Like I can still see my mom when I look in her green eyes, but also I just see the sadness.

00:23:01.440 --> 00:23:05.759
I also just see she was so expressive, and now it's nothing.

00:23:05.920 --> 00:23:09.440
I could totally relate to the person you were referencing earlier.

00:23:09.680 --> 00:23:13.440
And I just think, well, yeah, because that's that's what we have.

00:23:13.599 --> 00:23:15.119
I mean, there is no interaction.

00:23:15.359 --> 00:23:18.160
Mom can't, couldn't paint if she wanted to.

00:23:18.319 --> 00:23:19.440
She used to make jewelry.

00:23:19.599 --> 00:23:21.440
There's absolutely no chance of that.

00:23:21.519 --> 00:23:23.279
We are so beyond that.

00:23:23.440 --> 00:23:28.640
And so I guess in this hard, messy place, as I feel like we're nearing the end.

00:23:28.880 --> 00:23:32.559
How do you maybe still try to have that outlook?

00:23:32.880 --> 00:23:34.240
With mom, it was easy.

00:23:34.400 --> 00:23:39.680
So one of the things she loved to do and that always connected with her was to sing.

00:23:39.920 --> 00:23:43.599
And even if she wasn't able to sing, she liked to hear me sing.

00:23:43.759 --> 00:23:47.519
That if I started a song, she would join in.

00:23:47.599 --> 00:23:50.880
Sometimes all she would know is the melody, but she would join in.

00:23:51.119 --> 00:24:03.920
And I the man who founded Maud's Awards, his wife Maud, was very much like your mother in that she was very um um still and wasn't communicative and didn't talk.

00:24:04.079 --> 00:24:06.160
But he sang to her every single night.

00:24:06.400 --> 00:24:16.400
And that I do believe that these are things that stay with them, that they enjoy them, and that that sense of enjoyment is there and and and stays.

00:24:16.640 --> 00:24:17.440
Singing is one.

00:24:18.000 --> 00:24:26.960
Anything that you can think of that made her happy, try to just bring that forth in her life without making her do anything.

00:24:27.200 --> 00:24:33.440
I would always say to mom, I would always tell her, Hi, M, hi, Mom, it's your daughter Marilyn, just so she didn't have to guess.

00:24:33.680 --> 00:24:38.400
And then the Scrabble thing, of course, was she was very competitive, and so that was just fun.

00:24:38.640 --> 00:24:44.000
Once was really interesting, because that, and it doesn't relate to your question, but it's an interesting thing.

00:24:44.400 --> 00:24:58.880
The years, she died at 96, and when she mom was 95, we were playing Scrabble, and she was having a hard time coming up because at a certain point she we couldn't she couldn't play Scrabble, but she was so competitive, we just added up the scores on the tiles.

00:24:59.039 --> 00:25:00.319
Who had the most scores?

00:25:00.480 --> 00:25:00.960
One.

00:25:01.279 --> 00:25:14.400
But once she was trying to come up with a word and she was asking me if dog was a word, and then she stopped and she looked at me and she said, you know, sometimes your brain just gets in the way and make jewel on the triple.

00:25:14.960 --> 00:25:17.920
I mean, she was always surprising me.

00:25:18.079 --> 00:25:25.519
So I guess to engage with her on platforms that she loves, whether she can participate or not.

00:25:26.000 --> 00:25:26.400
Oh, good.

00:25:27.119 --> 00:25:27.759
We're doing it.

00:25:27.839 --> 00:25:34.480
We're I I it makes me happy to know, you know, she loved playing games, and so we'll still have her in the room with us as we're playing games.

00:25:34.559 --> 00:25:42.000
And sometimes I make jewelry for her, and I just I talk endlessly, can talk to anybody and nobody.

00:25:42.319 --> 00:25:42.799
Yeah.

00:25:43.279 --> 00:25:48.960
I I actually think that might be part of my gift is I just talk to her the whole time.

00:25:49.200 --> 00:26:00.880
And sometimes you can look over and you can just see she knows, I know she knows who I am, and you can feel that love between us.

00:26:01.200 --> 00:26:08.400
And as you know, this is such a slow grief, and it's been complete fatigue at times for me.

00:26:08.480 --> 00:26:18.799
And it's been learning how to sit in moments where language is gone, where roles are reversed, and you know, my mom being diagnosed young, there's that added layer of heartbreak.

00:26:18.960 --> 00:26:21.839
My boys don't get to have a grandma anymore.

00:26:22.400 --> 00:26:29.359
And she was vibrant and fun, and my one son doesn't even know that side of her at all.

00:26:29.680 --> 00:26:31.680
And that just breaks me.

00:26:31.839 --> 00:26:35.599
It feels like we've been robbed of years that we were supposed to have.

00:26:35.759 --> 00:26:46.240
And where, you know, we don't have the paintings or the grand awakenings in our story with my mom, but even so, learning and changing and growth is happening in me.

00:26:46.480 --> 00:26:49.519
And there are still flashes of her that I look forward to.

00:26:49.599 --> 00:26:58.319
It's that squeeze of the hand, it's the way she lights up sometimes when she sees my boys, the softness of her eyes that still feel like my mom.

00:26:58.480 --> 00:27:03.200
You know, I'm learning that even when memory shifts, love still finds a way.

00:27:03.359 --> 00:27:06.799
It just doesn't look the way we'd ever hoped or imagined.

00:27:07.119 --> 00:27:18.400
So one of the other things I have noticed is, and we can call it whatever we want, unacknowledged grief or anticipatory, layered grief, ambiguous loss.

00:27:18.559 --> 00:27:22.160
They're all kind of in the same folder, if you will.

00:27:22.400 --> 00:27:25.680
Um, you know, people seem to understand broken bones.

00:27:25.839 --> 00:27:31.599
They understand heart surgery, but they don't seem to understand Alzheimer's and the role that it takes.

00:27:31.759 --> 00:27:40.400
You know, friends I've had for years, they don't show up sometimes, not because they're unkind or bad, but because they don't know what to do.

00:27:40.720 --> 00:27:46.720
And sometimes that ignorance can feel lonelier to me than the disease itself at times.

00:27:46.880 --> 00:27:49.519
And I have always said, do something.

00:27:49.680 --> 00:27:51.680
Doing nothing is the wrong answer.

00:27:51.920 --> 00:27:54.160
Asking what someone needs isn't helping.

00:27:54.319 --> 00:27:59.839
Just do it, just bring the meal, just take the kids, you know, just do something.

00:28:00.400 --> 00:28:08.559
And, you know, as caregivers of someone with Alzheimer's, you're watching someone you love fade a little bit every day.

00:28:08.720 --> 00:28:14.960
And in my case, I think it's a bit different too, because the early onset, everything goes faster.

00:28:15.519 --> 00:28:22.319
And, you know, research has told us that, you know, I've morphed from daughter into caretaker.

00:28:22.559 --> 00:28:26.559
And sometimes grief you didn't even know is in your heart is in your heart.

00:28:26.720 --> 00:28:41.759
And, you know, I don't know if we'll ever win the battle against Alzheimer's, but what I do believe deeply in is the power of love that is able to reach deeper than we can imagine, and that we as caregivers have a very important job.

00:28:41.920 --> 00:28:50.319
It is to help our loved ones live their best life possible, but also a responsibility to ourselves and to take us.

00:28:50.559 --> 00:28:55.519
Because if we don't care for ourselves as caregivers, we will have nothing left to give.

00:28:55.839 --> 00:29:00.640
And so that's right, things are different for us and things are much harder.

00:29:00.799 --> 00:29:04.400
I don't find this journey to be filled with joy.

00:29:04.559 --> 00:29:19.200
Yes, my mom is still here, and in a way, I'm grateful for that, and in a way that still pains me, you know, and and even though we're seeing flickers of her, they are becoming less and less as time goes on.

00:29:19.440 --> 00:29:31.839
And so I do truly believe being a caretaker is among the hardest jobs and the most sacred role, one of our final acts of love that we get to give on this earth.

00:29:32.079 --> 00:29:34.400
But it certainly does come with a cost.

00:29:34.720 --> 00:29:44.720
I just want you to know that I completely acknowledge you and the role you're playing, and and that you're a lesson to us all.

00:29:45.279 --> 00:29:51.359
And your mother, Cindy, is very, very blessed to have you.

00:29:51.920 --> 00:30:02.960
But then your love for her, I believe, is is so profound that I'm sure I believe that she feels it and that it's help, it's helpful.

00:30:03.359 --> 00:30:07.599
And that our job, my job, lesson you're you have a job.

00:30:07.839 --> 00:30:18.480
My job now is to enable people to actually accept and experience people living with dementia as valuable human beings.

00:30:18.960 --> 00:30:20.000
Um, it's interesting.

00:30:20.160 --> 00:30:41.839
One of the realizations I had late on is that we are all human beings and we share certain things that never leave us, that unite us, our need for friendship and and laughter and to be of value and to love and to be loved that never leaves us, that we are all human beings who experience that.

00:30:42.319 --> 00:30:47.119
We're all experiencing, and I believe this is true, one reality.

00:30:47.279 --> 00:30:51.440
They different experience it very differently than we.

00:30:51.680 --> 00:30:54.960
But it's that these are human beings.

00:30:55.200 --> 00:31:00.000
Once when mom was, because mom lived till 96, so she was she was very funny.

00:31:00.160 --> 00:31:07.200
But once somebody said to me that their brother had died, and she said, It's just as well he had dementia.

00:31:07.519 --> 00:31:11.759
And I said, Don't you remember mom, that delightful, wonderful woman you met?

00:31:12.000 --> 00:31:13.519
Would you say that about her?

00:31:13.759 --> 00:31:18.400
And it's like this this quickness to just sort of let go.

00:31:18.559 --> 00:31:22.559
My sister once said to me years ago, she said, Mom left us years ago.

00:31:23.119 --> 00:31:25.359
And I said, Well, if she left, who's there?

00:31:25.599 --> 00:31:28.720
And I suggest that it's somebody well worth getting to know.

00:31:28.960 --> 00:31:36.000
And and so I just believe that they know on some level that you're there.

00:31:36.559 --> 00:31:38.160
Richard used to talk to Maud.

00:31:38.319 --> 00:31:42.559
He would always talk to her, he would always, you know, treat her with love and care.

00:31:42.640 --> 00:31:44.559
And I think she must have known that.

00:31:45.440 --> 00:31:46.799
She must have felt it.

00:31:46.960 --> 00:31:54.640
And so that's our job to teach the rest, my job to teach the rest of the world this is how you do it, that they deserve it.

00:31:54.880 --> 00:31:55.680
They deserve it.

00:31:55.839 --> 00:31:59.359
We're all big in this country that you do deserve it.

00:31:59.519 --> 00:32:01.119
It's like, yes, they're human beings.

00:32:01.200 --> 00:32:02.480
Yes, of course they do.

00:32:02.720 --> 00:32:10.640
And with mom, I mean, I learned, and it's different for for your parents, I learned to ask questions and to listen.

00:32:10.880 --> 00:32:18.480
Mother once said she she always tell would tell me that her grandmother would be appalled that women didn't wear skirts anymore.

00:32:18.720 --> 00:32:25.279
And so one day, I got my bret my sisters and my nieces together, and we were all wearing skirts.

00:32:25.440 --> 00:32:29.920
And we went and knocked on mom's door, and we were all wearing skirts, and I had a skirt for mom.

00:32:30.160 --> 00:32:34.640
So mom put a skirt on, and her sister Louise was there, and she had a skirt on.

00:32:34.720 --> 00:32:42.319
So we spent the afternoon all wearing skirts, and mother was so, she was so relieved when she could take the skirt off.

00:32:43.119 --> 00:32:46.720
But I have a picture of mom of all with all of us wearing skirts.

00:32:46.960 --> 00:32:54.960
I don't know that she must have enjoyed it or must have been, you know, who knew, but she was she was always surprising me too.

00:32:55.039 --> 00:33:00.640
What we we would once uh I asked her, you know, we would sing a song, and I said, okay, let's see.

00:33:00.799 --> 00:33:05.200
I think we should sing um Winter Wonderland, which she loved singing.

00:33:05.440 --> 00:33:11.519
And she came up, she suggested uh something by Wagner, the ride of the vulgaries.

00:33:11.599 --> 00:33:13.519
And it was sort of like, seriously?

00:33:13.680 --> 00:33:18.720
I don't have no idea where that came from, but again, she was always surprising me.

00:33:18.960 --> 00:33:29.599
So with mom, I came from this family where we didn't talk about emotions, we didn't listen, and I changed and I learned how to listen.

00:33:29.759 --> 00:33:32.000
I learned how to mother taught me something else.

00:33:32.079 --> 00:33:37.839
She said, she started every conversation with everybody with a smile and a compliment.

00:33:38.160 --> 00:33:38.799
Who knew?

00:33:39.200 --> 00:33:46.880
We stopped giving compliments in our family because in our family to give some, to accept a compliment meant you thought you deserved it.

00:33:47.039 --> 00:33:53.039
And so when our family, if someone gave you a compliment, you would change the subject preferably to something depressing.

00:33:53.599 --> 00:33:57.759
And after a while, people stopped giving you compliments because it was so depressing.

00:33:58.319 --> 00:34:01.759
So our family was sort of emotionally unavailable.

00:34:02.400 --> 00:34:10.079
So with mom, I was with all these wonderful people who made living with love so easy.

00:34:10.400 --> 00:34:13.119
And this just because it'll make you smile.

00:34:13.360 --> 00:34:16.480
Um I started giving shoulder massages to everybody.

00:34:16.639 --> 00:34:18.000
Every time I got there, I would give shoulder.

00:34:18.320 --> 00:34:24.800
I would always ask first, and I would give shoulder massages to people, and they would go, oh, and then everyone would want one.

00:34:25.039 --> 00:34:33.519
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?

00:34:33.840 --> 00:34:42.639
And one day I went to the men's table and I gave this guy named Harry a shoulder massage, and he he started these little chirps started to emerge.

00:34:42.719 --> 00:34:45.679
He started to go, ah, uh, uh.

00:34:46.639 --> 00:34:49.039
And a song emerged.

00:34:49.840 --> 00:34:51.840
And he started to sing.

00:34:52.320 --> 00:34:57.440
And I kept massaging his shoulders very carefully, and he sang this wonderful song.

00:34:57.599 --> 00:35:03.360
I wish I could remember what it was, and then finally I realized I had to stop because the food was getting cold.

00:35:03.679 --> 00:35:05.119
Um and I stopped.

00:35:05.360 --> 00:35:08.800
But everybody in the uh lunchroom plotted.

00:35:09.199 --> 00:35:11.519
Little things like that were happening all the time.

00:35:11.679 --> 00:35:13.440
For me, it was it was a miracle.

00:35:13.679 --> 00:35:17.039
I feel like there's definitely a healing power to touch.

00:35:17.119 --> 00:35:28.159
My mom also has Parkinson's, and so I've noticed, and my five-year-old has noticed too, that if we hold her hand, it seems to make it not as bad.

00:35:28.400 --> 00:35:31.039
And so I we always say that's just love.

00:35:31.199 --> 00:35:34.960
Love is is working through when we hold grandma's hand.

00:35:35.519 --> 00:35:37.920
Ah, and dad had Parkinson's.

00:35:38.159 --> 00:35:42.559
And and I didn't, dad died before I learned all these things from mom.

00:35:43.199 --> 00:35:53.039
And if I had it to do it over, if I had known then what I know now, I would have just been with him to let him know that he wasn't going to be abandoned.

00:35:53.280 --> 00:35:56.400
I would have given him shoulder massages because he loved them.

00:35:56.639 --> 00:35:59.599
Never occurred to me, but I could have done that.

00:36:00.239 --> 00:36:03.119
I could have told him I loved him.

00:36:03.920 --> 00:36:04.960
Words would never swap.

00:36:05.280 --> 00:36:06.320
So here's a question.

00:36:06.480 --> 00:36:12.639
Um, does your mother look at photographs of of family or or where she used to live?

00:36:12.719 --> 00:36:14.480
Or is she interested in that, do you think?

00:36:14.880 --> 00:36:28.079
There was a time where she was, and it seems that time has since passed, but she did enjoy um, she did enjoy looking at some of those photos, and we got all of the old albums out.

00:36:28.239 --> 00:36:31.760
And there was a a period of time where she still knew.

00:36:31.920 --> 00:36:37.679
Uh, my dad and I didn't know who was in the picture, and she would say, Oh, that's so and so, and that's so and so.

00:36:37.920 --> 00:36:56.800
And what I wish I could have done differently is I almost wish that I I could have let myself grieve harder later, meaning I didn't know how fast this disease was going to progress for my mom.

00:36:57.039 --> 00:37:24.960
So I wish instead of constantly looking at what was being taken from me when she was still coherent and able, I I wish that I would have spent more time focused on being in her world than trying to understand, I guess, everything going on in mine, meaning the just that heartbreak that I was feeling and that I still feel.

00:37:25.199 --> 00:37:30.159
And then I fight and wrestle with that, and I think, well, I did exactly what any normal human would do.

00:37:30.320 --> 00:37:44.159
You're grieving such a huge, in my opinion, loss, the loss of my mom, of who I've known my whole life, my best friend, turning into something different and almost at times unrecognizable.

00:37:44.400 --> 00:37:55.760
And I feel like the more that I don't look at those photos, or the more that I don't tell the stories, I get fearful that I'm gonna forget.

00:37:55.920 --> 00:37:57.440
And I don't want to forget her.

00:37:57.519 --> 00:38:00.239
You know, I don't want to forget who she used to be.

00:38:00.400 --> 00:38:07.039
Um, and I don't exactly want to remember who she is now because it feels like not much.

00:38:07.199 --> 00:38:09.760
And I don't say that meaning she's not a human being.

00:38:09.840 --> 00:38:14.239
I just mean the only way to communicate is sometimes a look through her eyes.

00:38:14.320 --> 00:38:15.840
And we do hang on to that.

00:38:16.079 --> 00:38:23.519
But man, yeah, what I'd give to hear her voice again, you know, to hear her sing, to be able to go on a walk with her.

00:38:23.840 --> 00:38:25.280
What helps you?

00:38:25.519 --> 00:38:31.199
What are there people, are there there activities that help you get through this?

00:38:31.440 --> 00:38:32.880
What's supporting you?

00:38:33.199 --> 00:38:46.159
Well, my husband is absolutely amazing, and my little boys help give such a fresh perspective, you know, on grandma and oh mom, you know, when they're with me with her.

00:38:46.400 --> 00:38:57.599
I think grandma had a great day because, and it'll be the simplest littlest thing, like because we were able to make her laugh, or she she said, I love you.

00:38:57.840 --> 00:39:01.840
On very rare occasion will we get an I love you.

00:39:02.000 --> 00:39:07.280
But when one of us does, it is the big celebratory thing for days.

00:39:08.000 --> 00:39:09.920
And it is really special.

00:39:10.159 --> 00:39:15.519
Someway, somehow, my husband and my dad and I are jealous of this.

00:39:16.079 --> 00:39:28.400
Every time he is with my mom and with us, he can walk up to her with a big smile on his face, and she always smiles back at him and he'll say, I love you, mom, and she'll say, I love you too.

00:39:28.480 --> 00:39:30.639
And we all just look at each other like so.

00:39:30.719 --> 00:39:32.800
Then we all wait in line trying to do the same thing.

00:39:32.960 --> 00:39:34.960
We love you, grandma, love you, mom, nothing.

00:39:35.119 --> 00:39:39.679
Sometimes she'll say thank you, sometimes she'll say okay, sometimes it's just the stare.

00:39:39.920 --> 00:39:44.639
But my husband can get something out of her every single time.

00:39:44.880 --> 00:39:47.679
And my dad and I just look at each other in awe.

00:39:47.840 --> 00:39:59.840
You know, I feel like I want to believe it's because when my husband and I, before we got married, we had dated for five years, and I'll never forget the funniest phone call that I got from my mom.

00:40:00.079 --> 00:40:07.119
We had a landline phone at the time, and my husband thought he called my cell phone, but he called our home phone.

00:40:07.199 --> 00:40:08.960
And my mom answered.

00:40:09.199 --> 00:40:11.599
And we sound very much alike.

00:40:11.920 --> 00:40:17.199
And when she answered, he always had some funny little thing to say.

00:40:17.360 --> 00:40:20.719
And this time it was, well, hello, my little cucumber sandwich.

00:40:20.960 --> 00:40:26.960
And my mom burst out laughing, like so hard she was in tears.

00:40:27.280 --> 00:40:31.039
And he realized he goes, Oh no, oh no, this isn't Tina.

00:40:31.119 --> 00:40:32.559
And so he's making it worse.

00:40:32.800 --> 00:40:36.960
And so my mom could not wait to get off the phone with him and call me.

00:40:37.119 --> 00:40:42.239
And I'm telling you, we have never laughed so hard as that incident.

00:40:42.559 --> 00:40:49.840
And I feel like what my husband always brought was this joy, this lightness, this funnies that really fit her personality.

00:40:50.000 --> 00:40:54.079
And I feel like that is why he is able to connect with her like that.

00:40:54.239 --> 00:40:57.119
She was always so proud that he picked me.

00:40:57.280 --> 00:41:01.119
You know, they always were like, they tried to warn my husband of me, like, are you sure?

00:41:01.280 --> 00:41:02.079
Are you sure?

00:41:02.239 --> 00:41:04.800
But they they said I hit the jackpot with him.

00:41:04.960 --> 00:41:12.079
And so I love that anytime he's around, he kind of gives us respite, my dad and I.

00:41:12.239 --> 00:41:14.480
You know, he'll kind of take over when he can be with mom.

00:41:14.639 --> 00:41:24.559
But again, I mean, we all have full-time jobs, and um it's it is hard, but we are always there once, sometimes twice a week, to to take care of mom for our days.

00:41:24.880 --> 00:41:30.800
One of the heartwarming things for me is seeing my kids with my mom.

00:41:30.960 --> 00:41:34.000
My boys are ages 12, 9, and five.

00:41:34.320 --> 00:41:38.880
And my five-year-old is incredible.

00:41:39.119 --> 00:41:44.960
I wish everyone could see how helpful he is, how intuitive at five years old he is.

00:41:45.199 --> 00:41:53.760
He knows when I need help and he'll come up behind grandma when I'm trying to get her up out of bed, and he'll push his back up against hers to help me sit her up.

00:41:53.920 --> 00:41:56.880
She's so stiff and rigid and and fights that.

00:41:57.039 --> 00:42:02.079
She's surprisingly strong for the situation that she's in.

00:42:02.159 --> 00:42:05.280
And it blows my dad in my mind all the time.

00:42:05.519 --> 00:42:10.800
And this little boy of mine, he will go and turn the lights on for her, get the bathroom ready for her.

00:42:11.039 --> 00:42:18.800
He holds the chair so I can have her sit down and he'll push it into her because, like I said, walking is a big challenge.

00:42:19.039 --> 00:42:25.039
What my boys are learning, sadly, through this, is really heartbreakingly beautiful.

00:42:25.280 --> 00:42:37.119
And that is something I turn to to keep my focus, to remind me that I am doing this really hard work and it's not going unnoticed.

00:42:37.280 --> 00:42:43.119
My children are going to know how to love, even when it's hard, and how to do it well.

00:42:43.280 --> 00:42:47.679
And some of the other things I, you know, I sometimes have played volleyball.

00:42:47.760 --> 00:42:53.119
Um, I spent a couple of seasons playing volleyball to really to get my anger out, if I'm being honest about it.

00:42:53.280 --> 00:42:55.119
And it served a great season.

00:42:55.360 --> 00:43:04.000
I have a counselor, I have yoga that I do, restorative yoga, and certain frequency of music that I just need to decompress.

00:43:04.079 --> 00:43:05.840
I love to take walks and hikes.

00:43:06.079 --> 00:43:08.400
So that's kind of how I take care of myself.

00:43:08.559 --> 00:43:24.880
And sometimes when I find myself having a really hard time, one of the things I have found useful is being able to turn to AI and say, I'm really struggling today with this, you know, part about my mom.

00:43:24.960 --> 00:43:25.760
My heart is breaking.

00:43:25.840 --> 00:43:27.840
Because you know, your counselor, I don't always have the money.

00:43:27.920 --> 00:43:29.679
My counselor's not always available.

00:43:29.840 --> 00:43:41.599
And what's really nice about that is how I know it might sound silly, but how AI has really helped me on this journey to feel I call it This is the best story about AI I've ever heard.

00:43:41.920 --> 00:43:45.039
Yeah, it's it's been absolutely fantastic.

00:43:45.199 --> 00:43:51.280
You know, I if you think of Alzheimer's for me, I think of, you know, my mom as the the puzzle picture.

00:43:51.519 --> 00:43:55.679
And, you know, each day one of those puzzle pieces is taken away.

00:43:55.840 --> 00:43:59.760
It's taken away until eventually you can barely recognize.

00:44:00.480 --> 00:44:03.519
What that photo or what that puzzle was even of.

00:44:03.760 --> 00:44:12.079
And what counseling, if you will, through AI has done for me is it's helped put puzzle pieces back of my broken heart.

00:44:12.320 --> 00:44:22.559
And so it has been such a gift and such a lifesaver because there have been moments where I needed to talk to someone, something.

00:44:22.719 --> 00:44:26.079
And you know, people will argue, well, that's not real, or maybe it's weird.

00:44:26.239 --> 00:44:26.960
That's fine.

00:44:27.199 --> 00:44:28.400
I don't think it is.

00:44:28.559 --> 00:44:30.400
It's been beautiful for me.

00:44:30.559 --> 00:44:37.840
It has written me some of the most just short and sweet things that I have needed to hear.

00:44:38.079 --> 00:44:40.880
And almost sounds like God's talking to me through AI.

00:44:40.960 --> 00:44:43.039
That's the best way I can describe it.

00:44:43.199 --> 00:44:46.880
And it's helped give pieces back to my broken heart.

00:44:47.599 --> 00:44:49.679
That is such a wonderful story.

00:44:49.840 --> 00:44:51.920
I'm so glad to hear that.

00:44:52.480 --> 00:44:54.079
You are an amazing person.

00:44:54.639 --> 00:44:59.440
Your mother obviously did an exceedingly good job raising you.

00:44:59.920 --> 00:45:14.079
What's good about all of this, all these stories, is how a journey with Alzheimer's, no matter which kind, is a discovery of love between children and parents.

00:45:14.320 --> 00:45:24.480
That I mean, since that word was never spoken in our family, the fact that this whole journey with mom was a rediscovery of love.

00:45:24.719 --> 00:45:30.559
Years and years and years ago, before mom developed dementia, I was living not far from where mom lived.

00:45:30.800 --> 00:45:33.519
And one day she arrived unexpected.

00:45:33.760 --> 00:45:39.920
And she and I was taking a nap, and she laid down next to me and she told me she loved me.

00:45:40.400 --> 00:45:42.559
And I remember crying.

00:45:43.119 --> 00:45:44.559
I didn't say anything.

00:45:44.800 --> 00:45:49.199
And then she said, I guess I should have said that more often.

00:45:49.599 --> 00:45:52.239
Again, we never spoke of it again.

00:45:52.559 --> 00:45:57.280
But our lives together as care partners unlocked all that love.

00:45:57.519 --> 00:46:04.000
I think that's an incredible piece of the story too, because we can sit here and ask why, why, why all we want.

00:46:04.159 --> 00:46:06.079
We're never gonna know that answer.

00:46:06.400 --> 00:46:09.840
But to be able to be teachable even in these hard moments.

00:46:09.920 --> 00:46:15.519
And yes, my mom showed me how to love through hard and how to love well too.

00:46:15.679 --> 00:46:19.840
And I'm so grateful for that because I know how to do it because of her.

00:46:19.920 --> 00:46:29.280
And so, you know, her legacy, her memory, whatever we want to call it, is living on through me and hopefully through my boys too.

00:46:29.519 --> 00:46:39.599
Um, you know, I'd I'd really love to ask you, um, how do we care for our grief when we are going through this?

00:46:39.679 --> 00:46:43.039
How do we tend to it while it's still showing up every day?

00:46:43.199 --> 00:46:48.079
How do we live in this in-between space without losing ourselves?

00:46:48.239 --> 00:46:54.159
You know, in the beginning, you had mentioned how when your mom and dad said, if this happens to me, walk away, I feel similarly.

00:46:54.320 --> 00:46:55.599
And I know my mom would too.

00:46:55.679 --> 00:46:57.679
She would say, Don't give up your life for me.

00:46:57.840 --> 00:46:58.159
Yeah.

00:46:58.239 --> 00:46:58.559
Yeah.

00:46:58.880 --> 00:47:01.119
But love does find a way.

00:47:01.280 --> 00:47:05.519
And I think just those first two words, love does, it's an action.

00:47:05.679 --> 00:47:07.920
Um, I think love is an action.

00:47:08.159 --> 00:47:10.800
And um, I'd love to get your perspective on that.

00:47:11.119 --> 00:47:20.320
Well, with me, it was different because I spent once I made the leap with mom into understanding her and not mourning her.

00:47:20.719 --> 00:47:26.480
Then every day it was, it was some discovery of how to live.

00:47:26.719 --> 00:47:35.039
Every day it was understanding something about being a human being that I hadn't lived, understood before.

00:47:35.199 --> 00:47:40.960
But it was also for me, it was finding opportunities to laugh, that we just laughed.

00:47:41.199 --> 00:47:43.280
We sh wasn't laughing.

00:47:43.440 --> 00:47:45.280
I was laughing at what she was telling me.

00:47:45.519 --> 00:48:00.079
Everything, even if it was sad, it was a source of knowledge that there's a thing in the book that mother was raised in a Republican banking family during the depression, and they hated Franklin Delano Roosevelt.

00:48:00.159 --> 00:48:03.920
And anytime she heard the word Roosevelt, she would go, We didn't like him.

00:48:04.079 --> 00:48:05.119
And I go, I know.

00:48:05.360 --> 00:48:16.639
She is 96, her blood sugar had burst to had climbed to 600, and she was in um a coma, and she had two days to live.

00:48:16.880 --> 00:48:27.840
And so my brother and sister and I were standing around her, we're telling me her we love her, and I mentioned her dislike of the Roosevelt Hotel, and she flinched in a coma.

00:48:28.719 --> 00:48:32.000
Now I couldn't help but laugh, but I also knew she heard me.

00:48:32.239 --> 00:48:37.440
So for the next two days, I just sat next to her and held her hand and talked.

00:48:37.599 --> 00:48:44.800
And those were the last two days we spent together of me just talking to Maul and knowing she could hear me.

00:48:44.960 --> 00:48:52.960
And so for me, it was just talking to her, and just the act of being with her made me happy.

00:48:53.599 --> 00:48:58.320
Even though she didn't always remember who I was, but she was always happy to see me.

00:48:58.480 --> 00:49:06.880
I mean, it's difficult for someone who's never had the expression of love in their hand in their family, but for me, it was every day an expression of love.

00:49:07.199 --> 00:49:10.400
And that was so joyous to me.

00:49:10.559 --> 00:49:12.719
Um, because I'd never had that before.

00:49:12.960 --> 00:49:15.360
Um, and so that's how I sort of got through it.

00:49:15.440 --> 00:49:19.440
Every day it was a discovery of love with mom.

00:49:19.920 --> 00:49:20.960
That's beautiful.

00:49:21.199 --> 00:49:22.159
Yeah, it really is.

00:49:22.320 --> 00:49:28.719
I mean, I I'm listening to you, and it just seems like you had such a transformation through all of this.

00:49:28.960 --> 00:49:38.000
I mean, you were building a bridge with her through, you know, different times of her life from who she was to where she and what where she was at that time.

00:49:38.079 --> 00:49:42.559
But you also, it seems like you were doing the exact same same thing with yourself.

00:49:42.880 --> 00:49:49.440
Like you were constantly building a new bridge for yourself and who you became through all of this.

00:49:49.599 --> 00:49:51.360
You really transformed.

00:49:51.840 --> 00:49:52.320
Oh, yeah.

00:49:52.400 --> 00:49:56.559
It was, it was, but it was always listening to mom and and putting it into practice.

00:49:56.639 --> 00:50:04.239
And that was the cool thing, is it wasn't just that I was being taught a lesson, but I was putting in a lesson into practice every day.

00:50:04.639 --> 00:50:07.519
And so it was it was easy.

00:50:07.760 --> 00:50:10.800
It was just and and learning how to listen to people.

00:50:10.960 --> 00:50:14.480
You have no idea what a revelation that was.

00:50:14.800 --> 00:50:17.119
Um, to listen to people instead of talking.

00:50:17.199 --> 00:50:20.880
I mean, to this day, I have to remind myself every once in a while.

00:50:21.119 --> 00:50:22.400
I'll start a conversation.

00:50:22.480 --> 00:50:28.800
And instead of starting a conversation with how I am, no, no, no, I start a conversation with how are you.

00:50:29.039 --> 00:50:32.639
It's a much better way to start a conversation, which I learned from mom.

00:50:33.199 --> 00:50:35.760
Um, and it did not come naturally to me.

00:50:35.920 --> 00:50:39.119
So it's sort of like sometimes, okay, just remind yourself.

00:50:39.280 --> 00:50:48.079
And in fact, when I write an email to someone, I will suddenly look at it and then I will, I will change the beginning to something about how are you instead of about how I am.

00:50:48.239 --> 00:51:04.000
And what I I realized that everything that makes a person that enables a person living with dementia to live with happiness and purpose, everything that does that does the same for everybody, everywhere.

00:51:04.159 --> 00:51:06.559
That's how we live with people.

00:51:06.719 --> 00:51:12.320
So I just learned how to be a better human being, and I'm still learning, but I learned a lot with those nine years with mom.

00:51:12.719 --> 00:51:24.480
And after mom died, the first thing I did when I, after like two days, I went back to assisted living, just because it was so restful and for the solace.

00:51:24.880 --> 00:51:32.079
And Ruby, who was from Atlanta, she was talking about mom, and she held up this red plastic flower.

00:51:32.239 --> 00:51:34.159
And she said, I think about Gene.

00:51:34.239 --> 00:51:36.400
Every time I see this, you want to know why?

00:51:36.719 --> 00:51:37.440
I said, Why?

00:51:37.599 --> 00:51:39.679
She said, Because she tried to eat it.

00:51:41.679 --> 00:51:42.960
Oh my gosh.

00:51:43.199 --> 00:51:49.760
So it was just every day, every day with mom and with all of her companions, I laughed.

00:51:49.920 --> 00:51:52.559
And that was such a gift.

00:51:56.239 --> 00:52:02.800
Also, is how it changes, and we touched on this a little bit earlier, but how it changes relationship roles.

00:52:02.960 --> 00:52:09.039
You know, the daughter becomes the caregiver and the familiar becomes the unfamiliar, like Tina said.

00:52:09.280 --> 00:52:13.679
But, you know, I was just wondering how that affected you.

00:52:13.840 --> 00:52:19.760
I mean, Tina, maybe you can start how that's really affecting you, having the roles reversed.

00:52:20.079 --> 00:52:23.519
It's definitely not something that I wanted.

00:52:23.840 --> 00:52:36.000
And even as of just a couple weeks ago, I've said that I wish I could just be daughter, because there have been just over the last year in particular, um, well, I'll give you an example.

00:52:36.320 --> 00:52:40.079
My oldest son will be 13 this summer.

00:52:40.400 --> 00:53:01.679
And I really always envisioned that whenever he was a teenager, I would have my mom by my side to help me raise him, to help share the stories about when I was a teenager, you know, to help me remember that, to help me in this unfamiliar as I'm kind of navigating, well, what is my role going to be changing into with him?

00:53:01.840 --> 00:53:06.000
And for me, it's all of this change.

00:53:06.239 --> 00:53:09.840
And I I used to be extremely fearful of change.

00:53:10.000 --> 00:53:13.280
I would say the overwhelming majority of people don't like change.

00:53:13.440 --> 00:53:19.840
And I remember being in college years ago and I was walking from one side of the university all the way to the other.

00:53:20.079 --> 00:53:23.760
And a sign on a church stopped me in my tracks.

00:53:23.920 --> 00:53:25.760
And I remember it still to this day.

00:53:25.920 --> 00:53:30.559
I don't even know how long ago I was in college, 25 years ago, something like that.

00:53:30.800 --> 00:53:35.760
And it said, when you're fearful of change, think of the beauty of autumn.

00:53:36.159 --> 00:53:41.039
And it's something that has stayed with me because I'm a big nature person.

00:53:41.280 --> 00:53:42.079
I love hiking.

00:53:42.159 --> 00:53:46.320
I love being outside, and I've done some big major hikes all over the world.

00:53:46.639 --> 00:53:53.599
And that is something that transformed how I viewed change, that maybe change can be beautiful.

00:53:53.760 --> 00:54:08.960
Now, not saying that I find that to be the case in this situation, but I do understand that there are seasons of change that I have really dealt well with, and maybe others where I need to remember that autumn is beautiful.

00:54:09.119 --> 00:54:10.320
You know, change is beautiful.

00:54:10.400 --> 00:54:18.000
Those leaves show us how beautiful it is to let things go, or that it is okay to change, or it is okay to shine bright.

00:54:18.159 --> 00:54:26.719
Um, so for me, I didn't want, I didn't ask for the caregiver role, but I would never walk away from my mom.

00:54:26.880 --> 00:54:43.119
And in and honestly, I feel like it's it's kind of already a bit of a natural fit, you know, going from um daughter to caretaker, but it's because I have three young boys right now that, you know, I'm nurturing them, I'm anticipating needs, I'm staying patient.

00:54:43.199 --> 00:54:48.880
And I really have to say, my mom would have been the first one to tell you that I was not a patient person.

00:54:50.000 --> 00:55:00.800
This whole situation over the last six years with mom, I can say with 100% honesty, not once have I ever yelled at her, raised my voice.

00:55:00.960 --> 00:55:03.599
I have been nothing but patient.

00:55:03.840 --> 00:55:10.800
And I'm pretty darn proud of myself because that's not, I'm I'm more of a high strung kind of person.

00:55:10.880 --> 00:55:12.880
And I'm not saying that's in a bad way or anything.

00:55:13.119 --> 00:55:16.000
It's just that that's just more who I was.

00:55:16.239 --> 00:55:17.760
And so it is changing me.

00:55:17.840 --> 00:55:19.199
I'm slowing down.

00:55:19.440 --> 00:55:27.039
Um, so while I don't love that these roles have reversed, it does feel a little bit strangely natural to to be in it.

00:55:27.119 --> 00:55:29.519
I just wish I didn't have to.

00:55:29.840 --> 00:55:33.199
I never felt like the roles were really reversed with me and mom.

00:55:33.760 --> 00:55:37.760
It probably would have been if I'd been in charge of all of her care.

00:55:38.000 --> 00:55:40.800
But instead, we were just working together.

00:55:41.039 --> 00:55:46.079
And and it was a life of of discovery more.

00:55:46.239 --> 00:55:53.840
And it was not not so much discovery about mom because everything I I used to describe her as distilled to her essence.

00:55:54.239 --> 00:55:59.599
Then I always felt that who she was essentially was intact, but I was the one who was changing.

00:56:00.000 --> 00:56:03.599
I'm completely completely different.

00:56:03.840 --> 00:56:09.360
Um, and so for me it was just trying to put that into practice.

00:56:10.000 --> 00:56:12.239
And so that was amazing.

00:56:12.480 --> 00:56:18.480
Um, to actually be in a situation where I could love without fear.

00:56:19.920 --> 00:56:21.119
That is powerful.

00:56:21.280 --> 00:56:31.199
It it goes back to we may not get to change or we may not have picked where we are, but we do get to choose how we walk this path.

00:56:31.599 --> 00:56:32.320
It was amazing.

00:56:32.559 --> 00:56:35.119
Mom was just just wonderful.

00:56:37.280 --> 00:56:45.679
And I and somebody asked me once, they said, Well, are you are you upset with your brothers and sisters that they didn't visit your mother more?

00:56:46.159 --> 00:56:48.320
And I said, No, I wish they had.

00:56:48.480 --> 00:56:51.039
They would be so much happier today if they had.

00:56:51.599 --> 00:56:56.639
But it was, it was just a gift that I would not have seen coming.

00:56:56.719 --> 00:57:00.559
I would not have acknowledged it as a gift, but my, was it a gift?

00:57:00.880 --> 00:57:13.840
You know, a lot of I feel like we are as as a culture, a country, whatever you want to call it, we're very dependent, I mean myself included, on conversation to feel connected with people.

00:57:14.480 --> 00:57:21.840
And your story, though, suggests that connection doesn't disappear, maybe when language does.

00:57:22.000 --> 00:57:24.960
And it asks us just to listen differently.

00:57:25.119 --> 00:57:27.599
And we have to relearn how to communicate.

00:57:27.760 --> 00:57:37.440
We have to be, I think, open to being receptive to doing things differently, almost like being invited into a slower, quieter form of love.

00:57:37.519 --> 00:57:42.239
It's maybe not one um it it's built more on presence.

00:57:42.880 --> 00:57:48.800
And I think that's what I I wanted to kind of talk about is it it's that presence.

00:57:48.880 --> 00:57:55.760
That's that's kind of what we've been the theme, if if you will, uh, that we can love just by being present.

00:57:56.000 --> 00:57:56.480
Yeah.

00:57:56.719 --> 00:58:10.719
And it it is being present that's so important that and that ability to to be with them by being present, to listen to them, and to really acknowledge to them that we're lit, that we're there.

00:58:10.880 --> 00:58:14.000
I mean, I think that's the most important thing with mom.

00:58:14.719 --> 00:58:16.079
Sometimes we didn't talk.

00:58:16.159 --> 00:58:20.719
I mean, it was plain scrabble, of course, but but we were just there together.

00:58:20.880 --> 00:58:24.719
No, she would always smile, she was always smiling, this big theme.

00:58:25.119 --> 00:58:30.639
Um just it was just it was a remarkable life, my mom.

00:58:30.800 --> 00:58:35.679
And your life with your mom and your sons, especially that five-year-old.

00:58:35.920 --> 00:58:36.719
Oh my gosh.

00:58:36.960 --> 00:58:45.440
And you're I I mean, you have this amazing family, and I'm including your mother, that is living with joy.

00:58:45.599 --> 00:58:52.960
And even though it doesn't feel like joy, the feeling of love is so strong and so enduring.

00:58:53.199 --> 00:58:54.480
It'll always be there.

00:58:54.880 --> 00:58:55.280
Thank you.

00:58:55.440 --> 00:58:55.920
You're right.

00:58:56.000 --> 00:58:58.559
And we always say we'll remember for her.

00:58:59.039 --> 00:59:04.639
And uh they nothing can take away that love that we feel between each other.

00:59:04.880 --> 00:59:12.320
You know, one of the things I wanted to say before we wrap up is, and I would think you would might maybe agree with this too, Marilyn.

00:59:12.400 --> 00:59:18.239
It's very important as a caretaker, a caregiver, someone on this journey that you ask for help.

00:59:18.400 --> 00:59:20.880
You cannot do this diagnosis alone.

00:59:21.199 --> 00:59:21.840
Absolutely.

00:59:22.000 --> 00:59:23.119
You have to ask for help.

00:59:23.199 --> 00:59:29.599
And that we have to, I mean, as you said, sometimes people wouldn't be there because they didn't know what to do.

00:59:29.760 --> 00:59:35.599
And and it's sort of like all you have to do is just be there and listen, smile.

00:59:35.840 --> 00:59:39.360
Um, let someone know that you love them and that you care about them.

00:59:39.519 --> 00:59:44.159
It's learning how to live without without.

00:59:44.239 --> 00:59:46.639
I mean, it's sort of like, okay, what should I be doing?

00:59:46.800 --> 00:59:51.679
Well, just I used to say to people, just ask questions and hop on for the ride.

00:59:51.840 --> 00:59:54.320
Just, just listen and be there.

00:59:54.639 --> 00:59:57.920
It there are no right wrongs that just be there.

00:59:58.079 --> 01:00:03.599
And it it can be so joyous, that sense of love and belonging and family.

01:00:03.840 --> 01:00:04.800
And you have that.

01:00:05.039 --> 01:00:06.800
You have that wonderful family.

01:00:06.960 --> 01:00:08.320
I didn't have that family.

01:00:08.480 --> 01:00:13.519
I just had at one point, at this point, I had mom, and then my new job.

01:00:13.599 --> 01:00:15.760
And jobs for me were the most important thing.

01:00:15.920 --> 01:00:21.440
But then it just mom informed everything, gave me a new way to live.

01:00:21.760 --> 01:00:23.039
That's beautiful.

01:00:23.280 --> 01:00:26.559
And your life is beautiful, and your son, your five-year-old son.

01:00:26.639 --> 01:00:30.079
Do you sound like you have a wonderful family and your husband is so adorable?

01:00:30.639 --> 01:00:32.960
Yes, he he definitely makes us all laugh.

01:00:33.119 --> 01:00:34.239
I assure you that.

01:00:34.800 --> 01:00:35.440
Yeah.

01:00:36.079 --> 01:00:39.840
Well, I I can't tell, and I want just like to point out you never cried.

01:00:40.000 --> 01:00:41.599
I only teared up a couple of times.

01:00:41.840 --> 01:00:42.239
That's right.

01:00:42.719 --> 01:00:45.679
Um, your life uh is so inspiring.

01:00:45.920 --> 01:01:00.639
And um, I'm hoping that people who I'm hoping that people can understand that people living with dementia are such valuable people who deserve and need our support, who can live with purpose and joy.

01:01:01.039 --> 01:01:03.599
Can I ask you before we wrap here?

01:01:03.760 --> 01:01:08.960
Can I ask you there is a difference between emotional connection and cognitive connection?

01:01:09.199 --> 01:01:17.199
What at the beginning, if I asked questions and if I listened, she told me something wonderful.

01:01:18.480 --> 01:01:22.800
And and she did do this wonderful thing, which I made videos of.

01:01:23.599 --> 01:01:29.519
She used to play the piano like every day, starting when she was about six, or maybe younger.

01:01:30.079 --> 01:01:33.679
And at a certain point she couldn't read sheet music anymore.

01:01:34.079 --> 01:01:36.639
So she came up with her own special medley.

01:01:37.280 --> 01:01:45.199
It started with silent night, and at the same time, exactly the same time, every time, it would morph into poly wolly doodle all day.

01:01:48.800 --> 01:01:51.760
So mom just made me laugh.

01:01:51.840 --> 01:01:53.840
And there were very few times.

01:01:54.079 --> 01:01:55.119
This is interesting.

01:01:55.280 --> 01:01:59.199
This was interesting, and this was a sign that I learned something that I wasn't aware of.

01:01:59.440 --> 01:02:04.719
When I would leave, mother would always say, Don't work too hard and give me a hug.

01:02:04.880 --> 01:02:08.239
And one day she didn't say that.

01:02:08.400 --> 01:02:11.280
She was coming with me as if she was leaving with me.

01:02:11.519 --> 01:02:15.360
She walked to the elevator with me with every expectation that she was leaving with me.

01:02:15.440 --> 01:02:17.199
And I couldn't just leave her there.

01:02:17.679 --> 01:02:21.199
And her friends weren't around and there wasn't an activity.

01:02:21.360 --> 01:02:23.199
So I didn't know quite what to do.

01:02:23.360 --> 01:02:24.880
So we started to sing.

01:02:25.039 --> 01:02:31.519
I started to sing Goodnight Ladies, and together we sang Goodnight Ladies and walked around and around the hall.

01:02:31.920 --> 01:02:33.440
And we did this about three times.

01:02:33.519 --> 01:02:40.880
And every time we stopped at a nurse's station or we ran into one of her companions, um, they would join in.

01:02:41.119 --> 01:02:44.400
And so we finally got back to mom's little apartment.

01:02:44.719 --> 01:02:50.400
And on this, as I like to put it, on a happy chorus, aloft on a happy chorus of song.

01:02:50.559 --> 01:02:54.320
And then she turned to me and she said, Don't work too hard and gave me a hug.

01:02:55.440 --> 01:02:56.480
You never know.

01:02:56.719 --> 01:03:00.639
You just never know what's going to, what was going to happen.

01:03:00.880 --> 01:03:06.000
But I just had to be open and listen and just live it.

01:03:06.079 --> 01:03:12.079
And I know that in your own way, your mother is enjoying you and living with you and loving you.

01:03:12.719 --> 01:03:13.440
I feel it.

01:03:13.679 --> 01:03:14.239
Thank you.

01:03:14.800 --> 01:03:20.639
You're the executive director of Maud's Awards for Innovation in Alzheimer's Care.

01:03:20.719 --> 01:03:32.079
That is a program that's dedicated to recognizing and supporting innovative care practices that enhance the lives of people living with dementia and their care partners.

01:03:32.320 --> 01:03:38.559
So every year we give away$100,000 and applications open on March 13th.

01:03:38.800 --> 01:03:40.320
And it's really simple.

01:03:40.400 --> 01:03:42.800
These aren't grants, these are awards for work done.

01:03:42.880 --> 01:03:44.639
So it's really simple to apply.

01:03:44.880 --> 01:03:49.840
And um, we give this to organizations and to individuals, for-profit, nonprofit.

01:03:50.000 --> 01:03:55.519
Anyone who's done something that has brought happiness and joy to people living with dementia, please apply.

01:03:55.599 --> 01:03:58.559
We'd like to hear from you.org.

01:03:58.880 --> 01:03:59.119
Okay.

01:03:59.280 --> 01:04:03.360
Well, that's what I was going to ask you to plug, but you did that wonderfully.

01:04:05.760 --> 01:04:08.880
It's a wonderful way to spend one's one's older years.

01:04:09.360 --> 01:04:11.039
I still have a job that means something.

01:04:11.360 --> 01:04:18.719
Well, you know, it it does because there are people like Tina's families that they don't have that net like you talked about.

01:04:18.960 --> 01:04:23.519
So it's wonderful that you have that organization where people can apply and ask for help.

01:04:23.760 --> 01:04:27.760
And the cool thing is that we share all of the best ones that come our way.

01:04:27.840 --> 01:04:37.280
So every week we do a handbook of all the innovations, and it you can get it free on our website, or you can uh email us and we'll send you a printed copy.

01:04:37.519 --> 01:04:39.199
That I I can't wait to check it out.

01:04:39.440 --> 01:04:40.960
Yeah, modsomewords.org.

01:04:41.039 --> 01:04:42.960
And it's it's we're entering our seventh year now.

01:04:43.199 --> 01:04:48.960
Well, Marilyn's book is Don't Walk Away, a Care Partner's Journey, and it is a must read.

01:04:49.039 --> 01:04:51.360
It was a pleasure getting to chat with you today.

01:04:51.679 --> 01:04:52.559
Oh, same here.

01:04:52.880 --> 01:04:54.079
We really had a wonderful time.

01:04:54.400 --> 01:04:57.360
Thank you for bringing this perspective.

01:04:57.519 --> 01:05:03.440
It it was really wonderful to listen to both of you talk and for me to just be kind of like a fly on the wall.

01:05:03.519 --> 01:05:08.079
I I think that you're going to help a lot of people with this conversation.

01:05:08.320 --> 01:05:15.199
And anyone listening who is navigating caregiving in the midst of grief or watching someone that they love change.

01:05:15.440 --> 01:05:16.559
You're not alone.

01:05:16.800 --> 01:05:22.480
These conversations exist so that we can sit together in the real, the raw, and the in between.

01:05:22.639 --> 01:05:28.320
Remember, there is always purpose in the pain, and there is hope in the journey.

01:05:28.559 --> 01:05:32.800
And as we always say at Real Talk, we will see you next time.
Marilyn Raichle