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

0:08 Welcome back to Real Talk with Tina and Ann. I am Tina. And I am Anne. Well, today we are joined by Marilyn Raikel. 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. Marilyn's life shifted when she became a caregiver for both of her parents as they developed dementia. 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. 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.

0:54 Now, through her writing and advocacy, Marilyn reminds us even when memory changes, a person we love is still very much there. And Marilyn, thanks so much for joining us today. We very much appreciate you and your story and putting it on paper for everybody to read and being here for our listeners. We are excited to jump into this book and life experiences that you have gone through. And I want to paraphrase in part something that you wrote in your book because it touched my heart so much. You said this about your mom. Her paintings opened up my eyes, heart and soul, to a woman who still had so much to say through her art.

1:36 I moved past the fear and everything I thought I understood about Alzheimer's. I saw not an empty shell lost in a fog, but a joyful, creative mind still alive with possibility. 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. Our visits became essential, rather than dutiful, filled with laughter, discovery, and what she called just delightful. This book tells a story of building a life together in those fleeting moments, learning to navigate late-stage dementia side by side. It has been the most rewarding journey of my life.

2:19 Thank you, mom. So thank you for letting me read that. And I really think it gives the people who have Alzheimer's the humanity that they deserve. And for those who are caring for them as well, as our beautiful Tina is doing with her mom. What I hear in your words is something so important that people living with Alzheimer's are still here. And that connection doesn't disappear. It changes. So today is just not an interview, it's a shared space. And Marilyn, as beautiful as your experience is, I know that is not what a lot of caretakers experience. 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.

3:09 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. I'm not there. I'm not there on that journey with my mom. 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. I am very much walking the caregiver path right now and have been for six years with my own mom. She was diagnosed with early onset Alzheimer's at the very young age of 59, and it crushed me. She has progressed to the late stage so fast.

3:50 I am her secondary caretaker. My dad is the real hero here. And so when I say I appreciate you writing this book and coming here today, I really mean it. The topic of Alzheimer's and dementia, it is so layered. And I want to step into your personal experience a little more, Marilyn. You have spoken so beautifully. Like I said, about this being a rewarding journey. I'm a little jealous, to be quite honest. 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. And my hope is that you'll be able to give perspective. 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.

4:40 So I'm curious if you can talk about these things and also maybe how long it took you. 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? Well, first of all, thank you. Thank you very much. Thank you both, but thank you, Tina. I know you've had a completely different journey than I. 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. Mom was living in a really good continuing care facility.

5:22 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. And you're operating without a net. And so I am exceedingly interested in hearing your story and your story about your mom. And what's her name? Cindy. Cindy, thanks. Um, and so with me, mother, there was Alzheimer's on in dad's side of the family a lot. Um, some in mom's. 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.

6:03 There's not going to be anything you can do. We're going to be in a safe place. Don't sacrifice your lives for us and walk away. And we all thought, okay, that makes sense. Sure. And dad, who was developing Parkinson's, um, was pretty much her dealing with her daily care. Um, and we pretty much, to our my great chagrin, disgrace, sadness, pretty much left him alone. When I came back from graduate school in 2006, there were no jobs because it was the depression or recession. And my family said, okay, we're gonna pool our resources, we're gonna keep you afloat, you're gonna be the family caregiver.

6:45 Well, and I didn't really have a choice. That was my new job. I had no interest in doing it. I knew nothing. Um and it was but there I was, um stuck. And my resistance was really strong when I was I was there, I would make sure they went to doctor's appointments. I did my best to keep them engaged. Um, but the word walk away was always in the back of my mind. Um and this it this went on for about two years. 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.

7:31 Dad wanted the best for mom, and I wanted the best for both of them. So what we had in common were shared needs. Um, so I slowed down, started to listen, started to do a better job, but still not a great job. Dad died at 89, and mom and dad had been best friends for 72 years. And when he died, we were all in the room with him. Mom was asleep. Um, we thought should we wake her up? Uh, because there was a rule in the family never cry. Never cry. Um, and we woke her up, and I've never seen tears like that, ever. Um, she just sobbed. And we finally got her back to sleep.

8:11 And the next morning she remembered dad was there. Dad was her best friend, and she talked about their life together. And that second day I got there early and she remembered. And the third day I got there and she said, I just want to be with your father. 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. And she laughed and she said, Well, that's life. And from then on, she put it in this little box. She thought about him all the time. She would say, Oh, mom, 40 times a day. But she started to re-enter the world and and and all make friends.

8:53 And I took her to a painting class because she was so boring. And she didn't expect anything because she thought painting was stupid. And um, even though she played the piano and everyone played instruments and but art, no. So I took her to this painting class and her painting was amazing. It was just beautiful, and I was stunned. Mother said she didn't do it, it wasn't hers, but I was stunned. So I kept taking her to this painting class. And every time I would show the painting to someone, her mom's paintings, the the reaction was always the same. It was always, I had no idea.

9:34 That the art just I used to say to people, Alzheimer's is scary, art isn't. So if you start with something joyous and happy, then then people can start to relax and then they can actually talk to you. But but if you just start with Alzheimer's, it's just too scary. So that's when I started doing the art of Alzheimer's and sharing her art with as many people as possible. Um and then one day her art to me looked like it was deteriorating. All these same scratchy lines, same colors. And I thought, hmm. So I got there early on painting day. And because I this point was only going really once a week.

10:15 And I got there early on painting day, and we did everything she liked to do. We played Scrabble, which we did every day until she died. Um, we looked at the view, we took a walk, and then I took her to the class, and her paintings completely changed. All these warm animal images started to appear in different colors, and that's when I went, oh, I see. I have a role to play in this. We're partners, and that's when we became care partners, and and together we were building a better life for both of us. And for me, because I had the luxury of making this decision, the best decision I've ever made.

10:56 It made me a better person, made me a happier person. I learned mother was still teaching me, and I learned from long, she gave me a blueprint for how to live a life. And that so I lived with her for nine years in that respect. And and visiting her was no longer something I had to do. It was something I needed to do. It was important, it was part of my life. 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. And I think it's important for all of us to know how we can help make your lives better, their lives better.

11:42 Yeah, thank you for for noticing that. 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. So there isn't, there wasn't, still isn't, uh, much help available to them because of their young age. My dad still has to work, and my mom is such a late stage that she can barely say a few words. She cannot walk on her own. 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. 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.

12:31 And I sobbed and I thought, why is this? 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. And a neighbor was over and I was just venting to her about that. And do you know the next day what showed up on my front porch? A wheelchair, a brand new wheelchair. We couldn't get a shower chair for my mom covered either. So to say we've gotten zero help is not a lie.

13:13 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. And that was the advice because, quote, it would bankrupt the system if they were to help everyone who was suffering in this way. And I also balled my eyes out and maybe got angry on the phone. And I thought this is all the help that we have here. It's interesting for me because I'm raising three young boys and I have two jobs. I have a husband. 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.

14:01 And I'm also going through all of my last lasts with my mom. And I'm trying so hard to take it all in, but it's a lot. And I'm a big feeler. So you couple that with my self that's that's just this big feeler. I'm all or I'm nothing. And I'm clearly all in in this case. And so that has been one of the most challenging things is still working and my dad too, still working. 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.

14:41 She's so young. And it that part has been quite a challenge. 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. 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. And I, you know, friends don't know, it doesn't make them bad people. They just don't know what to do. So they do nothing, which is not the right answer. And so I just find myself in this place trying to just show my boys how to love and love well.

15:22 And so it's been such an emotional ride for me. 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. And did you kind of feel similarly at times, like alone or maybe not understood or or anything like that? Well, you have to understand I came from a family of Scottish Calvinists. Emotions were an emotional indulgence. We were trained, I was certainly trained not to feel much. Um, my whole purpose in life was to win. I basically ignored anything that was unpleasant and pretended that it wasn't there.

16:04 You sound much healthier tonight. Um But yeah, you still found joy. Joy is an emotion. Yeah, it's true. It's true. And it was with mom, it was it, it's only when her the paintings opened up a different image of mom. It was interesting when I so I have a question for you that I'll get to. Um when I met this man once and he was telling me about his wife who was in a nursing home. And he said, When I see her, she kisses and she tells me she loves me. And when I look in her eyes, there's nothing there. And I leave in tears. And I was I thought, why couldn't he see what I mostly agree would have, which is a woman with something to say.

16:45 All he could see was sadness and loss. And he wasn't experiencing it on a daily visceral basis the way you are. What changed for me and why the painting was so important and so powerful is that we were sharing joy. When mother was doing something so and enjoying herself so much, when she would start to paint, she would dig into home. And she was enjoying something so much. 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. And if you allow yourself to share joy with someone, then you can share that joy.

17:28 So that's what changed me. This I was able to share joy with mom. One person said to me, Well, how can I do that? I don't have a lot of time. And I said, Well, just try to give yourself five minutes. 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. And I know it's all so I I come at this from a privileged point of view where I had that time. 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.

18:16 Now I was seeing them as people, as people enjoying themselves, and that I played a role in helping them to do that. I had that great luxury of being able to do that. 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? Why do you think there's so much resistance? 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? I think that's probably true. Uh, and like the lady on the phone told me, it would bankrupt the system.

18:58 And so it all comes down, uh most things in life might come down to money. And um I think you've hit the nail on the head. 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. Why? And and it's like, but we don't know how much time we have left with them. And so why wouldn't we want to make it the best for them? I mean, I I it's it's a it's a great question because I've wrestled with that. And I think the most simple answer is money, but I think what you said is spot on.

19:43 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. And I have a friend who is in a situation similar to yours, not quite as extreme, who was taking care of her husband. And she said when she read the book, she said, I like the word hope. I have a harder time with joy because I wasn't experiencing joy. 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. 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.

20:31 Getting into assisted living is exceedingly in expensive, even for the not so good ones. 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. That is absolutely all my dad and I want that we have been unable to get. 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. And that becomes hard to to pick and choose because you do hear the horror stories.

21:11 And, you know, as long as we can, we don't uh honestly, we couldn't afford to have mom in a facility. We couldn't. And so they've horribly expensive. I mean, mom was at the be at the end, and she was in it, it's not as expensive as many. She was at level five of care, and she was paying uh sixteen thousand dollars a month. Who has that? No, it's especially when my dad has to also live. You know, he's so young on on top of that. You know, I it's funny you mentioned the word hope. Hope is my word. 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.

21:56 And I think hope is what's pulled me through many, many times. But The question I've wrestled with is yes, no, there's been no joy, you know, in in the journey. 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. 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? I mean, my mom cannot hardly say any word. She cannot walk by herself, she cannot feed herself, she cannot do the basic things that we probably take for granted every day.

22:43 The fact that we know that a fork goes in our mouth is a gift. And we don't think about that. And so, you know, I try to give myself grace, but I also want to learn if there is something I can do. Like I can still see my mom when I look in her green eyes, but also I just see the sadness. I also just see she was so expressive, and now it's nothing. I could totally relate to the person you were referencing earlier. And I just think, well, yeah, because that's that's what we have. I mean, there is no interaction. Mom can't, couldn't paint if she wanted to. She used to make jewelry. There's absolutely no chance of that. We are so beyond that.

23:23 And so I guess in this hard, messy place, as I feel like we're nearing the end. How do you maybe still try to have that outlook? With mom, it was easy. So one of the things she loved to do and that always connected with her was to sing. And even if she wasn't able to sing, she liked to hear me sing. That if I started a song, she would join in. Sometimes all she would know is the melody, but she would join in. 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.

24:04 But he sang to her every single night. 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. Singing is one. Anything that you can think of that made her happy, try to just bring that forth in her life without making her do anything. 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. And then the Scrabble thing, of course, was she was very competitive, and so that was just fun. Once was really interesting, because that, and it doesn't relate to your question, but it's an interesting thing.

24:44 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. Who had the most scores? One. 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. I mean, she was always surprising me. So I guess to engage with her on platforms that she loves, whether she can participate or not.

25:26 Oh, good. We're doing it. 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. And sometimes I make jewelry for her, and I just I talk endlessly, can talk to anybody and nobody. Yeah. I I actually think that might be part of my gift is I just talk to her the whole time. 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. And as you know, this is such a slow grief, and it's been complete fatigue at times for me.

26:08 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. My boys don't get to have a grandma anymore. And she was vibrant and fun, and my one son doesn't even know that side of her at all. And that just breaks me. It feels like we've been robbed of years that we were supposed to have. 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. And there are still flashes of her that I look forward to.

26:49 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. You know, I'm learning that even when memory shifts, love still finds a way. It just doesn't look the way we'd ever hoped or imagined. 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. They're all kind of in the same folder, if you will. Um, you know, people seem to understand broken bones. They understand heart surgery, but they don't seem to understand Alzheimer's and the role that it takes.

27:31 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. And sometimes that ignorance can feel lonelier to me than the disease itself at times. And I have always said, do something. Doing nothing is the wrong answer. Asking what someone needs isn't helping. Just do it, just bring the meal, just take the kids, you know, just do something. And, you know, as caregivers of someone with Alzheimer's, you're watching someone you love fade a little bit every day. And in my case, I think it's a bit different too, because the early onset, everything goes faster.

28:15 And, you know, research has told us that, you know, I've morphed from daughter into caretaker. And sometimes grief you didn't even know is in your heart is in your heart. 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. It is to help our loved ones live their best life possible, but also a responsibility to ourselves and to take us. Because if we don't care for ourselves as caregivers, we will have nothing left to give.

28:55 And so that's right, things are different for us and things are much harder. I don't find this journey to be filled with joy. 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. 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. But it certainly does come with a cost. 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.

29:45 And your mother, Cindy, is very, very blessed to have you. 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. And that our job, my job, lesson you're you have a job. My job now is to enable people to actually accept and experience people living with dementia as valuable human beings. Um, it's interesting. 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.

30:42 We're all experiencing, and I believe this is true, one reality. They different experience it very differently than we. But it's that these are human beings. Once when mom was, because mom lived till 96, so she was she was very funny. But once somebody said to me that their brother had died, and she said, It's just as well he had dementia. And I said, Don't you remember mom, that delightful, wonderful woman you met? Would you say that about her? And it's like this this quickness to just sort of let go. My sister once said to me years ago, she said, Mom left us years ago.

31:23 And I said, Well, if she left, who's there? And I suggest that it's somebody well worth getting to know. And and so I just believe that they know on some level that you're there. Richard used to talk to Maud. He would always talk to her, he would always, you know, treat her with love and care. And I think she must have known that. She must have felt it. 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. They deserve it. We're all big in this country that you do deserve it. It's like, yes, they're human beings. Yes, of course they do. And with mom, I mean, I learned, and it's different for for your parents, I learned to ask questions and to listen.

32:10 Mother once said she she always tell would tell me that her grandmother would be appalled that women didn't wear skirts anymore. And so one day, I got my bret my sisters and my nieces together, and we were all wearing skirts. And we went and knocked on mom's door, and we were all wearing skirts, and I had a skirt for mom. So mom put a skirt on, and her sister Louise was there, and she had a skirt on. So we spent the afternoon all wearing skirts, and mother was so, she was so relieved when she could take the skirt off. But I have a picture of mom of all with all of us wearing skirts. 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.

32:55 What we we would once uh I asked her, you know, we would sing a song, and I said, okay, let's see. I think we should sing um Winter Wonderland, which she loved singing. And she came up, she suggested uh something by Wagner, the ride of the vulgaries. And it was sort of like, seriously? I don't have no idea where that came from, but again, she was always surprising me. 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. I learned how to mother taught me something else. She said, she started every conversation with everybody with a smile and a compliment.

33:38 Who knew? We stopped giving compliments in our family because in our family to give some, to accept a compliment meant you thought you deserved it. And so when our family, if someone gave you a compliment, you would change the subject preferably to something depressing. And after a while, people stopped giving you compliments because it was so depressing. So our family was sort of emotionally unavailable. So with mom, I was with all these wonderful people who made living with love so easy. And this just because it'll make you smile. Um I started giving shoulder massages to everybody. Every time I got there, I would give shoulder.

34:18 I would always ask first, and I would give shoulder massages to people, and they would go, oh, and then everyone would want one. 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? 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. He started to go, ah, uh, uh. And a song emerged. And he started to sing. And I kept massaging his shoulders very carefully, and he sang this wonderful song. I wish I could remember what it was, and then finally I realized I had to stop because the food was getting cold.

35:03 Um and I stopped. But everybody in the uh lunchroom plotted. Little things like that were happening all the time. For me, it was it was a miracle. I feel like there's definitely a healing power to touch. 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. And so I we always say that's just love. Love is is working through when we hold grandma's hand. Ah, and dad had Parkinson's. And and I didn't, dad died before I learned all these things from mom. 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.

35:53 I would have given him shoulder massages because he loved them. Never occurred to me, but I could have done that. I could have told him I loved him. Words would never swap. So here's a question. Um, does your mother look at photographs of of family or or where she used to live? Or is she interested in that, do you think? 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. And there was a a period of time where she still knew. 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.

36:37 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. 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.

37:25 And then I fight and wrestle with that, and I think, well, I did exactly what any normal human would do. 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. 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. And I don't want to forget her. You know, I don't want to forget who she used to be. Um, and I don't exactly want to remember who she is now because it feels like not much.

38:07 And I don't say that meaning she's not a human being. I just mean the only way to communicate is sometimes a look through her eyes. And we do hang on to that. 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. What helps you? What are there people, are there there activities that help you get through this? What's supporting you? 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. 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.

38:57 On very rare occasion will we get an I love you. But when one of us does, it is the big celebratory thing for days. And it is really special. Someway, somehow, my husband and my dad and I are jealous of this. 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. And we all just look at each other like so. Then we all wait in line trying to do the same thing. We love you, grandma, love you, mom, nothing. Sometimes she'll say thank you, sometimes she'll say okay, sometimes it's just the stare.

39:39 But my husband can get something out of her every single time. And my dad and I just look at each other in awe. 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. We had a landline phone at the time, and my husband thought he called my cell phone, but he called our home phone. And my mom answered. And we sound very much alike. And when she answered, he always had some funny little thing to say. And this time it was, well, hello, my little cucumber sandwich.

40:20 And my mom burst out laughing, like so hard she was in tears. And he realized he goes, Oh no, oh no, this isn't Tina. And so he's making it worse. And so my mom could not wait to get off the phone with him and call me. And I'm telling you, we have never laughed so hard as that incident. And I feel like what my husband always brought was this joy, this lightness, this funnies that really fit her personality. And I feel like that is why he is able to connect with her like that. She was always so proud that he picked me. You know, they always were like, they tried to warn my husband of me, like, are you sure?

41:01 Are you sure? But they they said I hit the jackpot with him. And so I love that anytime he's around, he kind of gives us respite, my dad and I. You know, he'll kind of take over when he can be with mom. 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. One of the heartwarming things for me is seeing my kids with my mom. My boys are ages 12, 9, and five. And my five-year-old is incredible. I wish everyone could see how helpful he is, how intuitive at five years old he is.

41:45 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. She's so stiff and rigid and and fights that. She's surprisingly strong for the situation that she's in. And it blows my dad in my mind all the time. And this little boy of mine, he will go and turn the lights on for her, get the bathroom ready for her. 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. What my boys are learning, sadly, through this, is really heartbreakingly beautiful.

42:25 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. My children are going to know how to love, even when it's hard, and how to do it well. And some of the other things I, you know, I sometimes have played volleyball. Um, I spent a couple of seasons playing volleyball to really to get my anger out, if I'm being honest about it. And it served a great season. I have a counselor, I have yoga that I do, restorative yoga, and certain frequency of music that I just need to decompress. I love to take walks and hikes.

43:06 So that's kind of how I take care of myself. 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. My heart is breaking. Because you know, your counselor, I don't always have the money. My counselor's not always available. 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. Yeah, it's it's been absolutely fantastic. You know, I if you think of Alzheimer's for me, I think of, you know, my mom as the the puzzle picture.

43:51 And, you know, each day one of those puzzle pieces is taken away. It's taken away until eventually you can barely recognize. What that photo or what that puzzle was even of. And what counseling, if you will, through AI has done for me is it's helped put puzzle pieces back of my broken heart. 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. And you know, people will argue, well, that's not real, or maybe it's weird. That's fine. I don't think it is. It's been beautiful for me. It has written me some of the most just short and sweet things that I have needed to hear.

44:38 And almost sounds like God's talking to me through AI. That's the best way I can describe it. And it's helped give pieces back to my broken heart. That is such a wonderful story. I'm so glad to hear that. You are an amazing person. Your mother obviously did an exceedingly good job raising you. 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. 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.

45:24 Years and years and years ago, before mom developed dementia, I was living not far from where mom lived. And one day she arrived unexpected. And she and I was taking a nap, and she laid down next to me and she told me she loved me. And I remember crying. I didn't say anything. And then she said, I guess I should have said that more often. Again, we never spoke of it again. But our lives together as care partners unlocked all that love. I think that's an incredible piece of the story too, because we can sit here and ask why, why, why all we want. We're never gonna know that answer.

46:06 But to be able to be teachable even in these hard moments. And yes, my mom showed me how to love through hard and how to love well too. And I'm so grateful for that because I know how to do it because of her. 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. 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? How do we tend to it while it's still showing up every day? How do we live in this in-between space without losing ourselves?

46:48 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. And I know my mom would too. She would say, Don't give up your life for me. Yeah. Yeah. But love does find a way. And I think just those first two words, love does, it's an action. Um, I think love is an action. And um, I'd love to get your perspective on that. Well, with me, it was different because I spent once I made the leap with mom into understanding her and not mourning her. Then every day it was, it was some discovery of how to live. Every day it was understanding something about being a human being that I hadn't lived, understood before.

47:35 But it was also for me, it was finding opportunities to laugh, that we just laughed. We sh wasn't laughing. I was laughing at what she was telling me. 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. And anytime she heard the word Roosevelt, she would go, We didn't like him. And I go, I know. 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.

48:16 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. Now I couldn't help but laugh, but I also knew she heard me. So for the next two days, I just sat next to her and held her hand and talked. And those were the last two days we spent together of me just talking to Maul and knowing she could hear me. And so for me, it was just talking to her, and just the act of being with her made me happy. Even though she didn't always remember who I was, but she was always happy to see me.

48:58 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. And that was so joyous to me. Um, because I'd never had that before. Um, and so that's how I sort of got through it. Every day it was a discovery of love with mom. That's beautiful. Yeah, it really is. I mean, I I'm listening to you, and it just seems like you had such a transformation through all of this. 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. But you also, it seems like you were doing the exact same same thing with yourself.

49:42 Like you were constantly building a new bridge for yourself and who you became through all of this. You really transformed. Oh, yeah. It was, it was, but it was always listening to mom and and putting it into practice. 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. And so it was it was easy. It was just and and learning how to listen to people. You have no idea what a revelation that was. Um, to listen to people instead of talking. I mean, to this day, I have to remind myself every once in a while. I'll start a conversation. And instead of starting a conversation with how I am, no, no, no, I start a conversation with how are you.

50:29 It's a much better way to start a conversation, which I learned from mom. Um, and it did not come naturally to me. So it's sort of like sometimes, okay, just remind yourself. 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. 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. That's how we live with people. 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.

51:12 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. And Ruby, who was from Atlanta, she was talking about mom, and she held up this red plastic flower. And she said, I think about Gene. Every time I see this, you want to know why? I said, Why? She said, Because she tried to eat it. Oh my gosh. So it was just every day, every day with mom and with all of her companions, I laughed. And that was such a gift.

51:56 Also, is how it changes, and we touched on this a little bit earlier, but how it changes relationship roles. You know, the daughter becomes the caregiver and the familiar becomes the unfamiliar, like Tina said. But, you know, I was just wondering how that affected you. I mean, Tina, maybe you can start how that's really affecting you, having the roles reversed. It's definitely not something that I wanted. 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.

52:36 My oldest son will be 13 this summer. 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? And for me, it's all of this change. And I I used to be extremely fearful of change. I would say the overwhelming majority of people don't like change. And I remember being in college years ago and I was walking from one side of the university all the way to the other.

53:20 And a sign on a church stopped me in my tracks. And I remember it still to this day. I don't even know how long ago I was in college, 25 years ago, something like that. And it said, when you're fearful of change, think of the beauty of autumn. And it's something that has stayed with me because I'm a big nature person. I love hiking. I love being outside, and I've done some big major hikes all over the world. And that is something that transformed how I viewed change, that maybe change can be beautiful. 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.

54:09 You know, change is beautiful. 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. 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. 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. And I really have to say, my mom would have been the first one to tell you that I was not a patient person.

54:50 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. I have been nothing but patient. And I'm pretty darn proud of myself because that's not, I'm I'm more of a high strung kind of person. And I'm not saying that's in a bad way or anything. It's just that that's just more who I was. And so it is changing me. I'm slowing down. 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. I just wish I didn't have to. I never felt like the roles were really reversed with me and mom.

55:33 It probably would have been if I'd been in charge of all of her care. But instead, we were just working together. And and it was a life of of discovery more. And it was not not so much discovery about mom because everything I I used to describe her as distilled to her essence. Then I always felt that who she was essentially was intact, but I was the one who was changing. I'm completely completely different. Um, and so for me it was just trying to put that into practice. And so that was amazing. Um, to actually be in a situation where I could love without fear.

56:19 That is powerful. 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. It was amazing. Mom was just just wonderful. 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? And I said, No, I wish they had. They would be so much happier today if they had. But it was, it was just a gift that I would not have seen coming. I would not have acknowledged it as a gift, but my, was it a gift?

57:00 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. And your story, though, suggests that connection doesn't disappear, maybe when language does. And it asks us just to listen differently. And we have to relearn how to communicate. 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. It's maybe not one um it it's built more on presence.

57:42 And I think that's what I I wanted to kind of talk about is it it's that presence. 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. Yeah. 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. I mean, I think that's the most important thing with mom. Sometimes we didn't talk. I mean, it was plain scrabble, of course, but but we were just there together. No, she would always smile, she was always smiling, this big theme.

58:25 Um just it was just it was a remarkable life, my mom. And your life with your mom and your sons, especially that five-year-old. Oh my gosh. And you're I I mean, you have this amazing family, and I'm including your mother, that is living with joy. And even though it doesn't feel like joy, the feeling of love is so strong and so enduring. It'll always be there. Thank you. You're right. And we always say we'll remember for her. And uh they nothing can take away that love that we feel between each other. 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.

59:12 It's very important as a caretaker, a caregiver, someone on this journey that you ask for help. You cannot do this diagnosis alone. Absolutely. You have to ask for help. And that we have to, I mean, as you said, sometimes people wouldn't be there because they didn't know what to do. And and it's sort of like all you have to do is just be there and listen, smile. Um, let someone know that you love them and that you care about them. It's learning how to live without without. I mean, it's sort of like, okay, what should I be doing? Well, just I used to say to people, just ask questions and hop on for the ride. Just, just listen and be there.

59:54 It there are no right wrongs that just be there. And it it can be so joyous, that sense of love and belonging and family. And you have that. You have that wonderful family. I didn't have that family. I just had at one point, at this point, I had mom, and then my new job. And jobs for me were the most important thing. But then it just mom informed everything, gave me a new way to live. That's beautiful. And your life is beautiful, and your son, your five-year-old son. Do you sound like you have a wonderful family and your husband is so adorable? Yes, he he definitely makes us all laugh. I assure you that.

1:00:34 Yeah. Well, I I can't tell, and I want just like to point out you never cried. I only teared up a couple of times. That's right. Um, your life uh is so inspiring. 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. Can I ask you before we wrap here? Can I ask you there is a difference between emotional connection and cognitive connection? What at the beginning, if I asked questions and if I listened, she told me something wonderful.

1:01:18 And and she did do this wonderful thing, which I made videos of. She used to play the piano like every day, starting when she was about six, or maybe younger. And at a certain point she couldn't read sheet music anymore. So she came up with her own special medley. 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. So mom just made me laugh. And there were very few times. This is interesting. This was interesting, and this was a sign that I learned something that I wasn't aware of.

1:01:59 When I would leave, mother would always say, Don't work too hard and give me a hug. And one day she didn't say that. She was coming with me as if she was leaving with me. She walked to the elevator with me with every expectation that she was leaving with me. And I couldn't just leave her there. And her friends weren't around and there wasn't an activity. So I didn't know quite what to do. So we started to sing. I started to sing Goodnight Ladies, and together we sang Goodnight Ladies and walked around and around the hall. And we did this about three times. And every time we stopped at a nurse's station or we ran into one of her companions, um, they would join in.

1:02:41 And so we finally got back to mom's little apartment. And on this, as I like to put it, on a happy chorus, aloft on a happy chorus of song. And then she turned to me and she said, Don't work too hard and gave me a hug. You never know. You just never know what's going to, what was going to happen. But I just had to be open and listen and just live it. And I know that in your own way, your mother is enjoying you and living with you and loving you. I feel it. Thank you. You're the executive director of Maud's Awards for Innovation in Alzheimer's Care. 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.

1:03:32 So every year we give away$100,000 and applications open on March 13th. And it's really simple. These aren't grants, these are awards for work done. So it's really simple to apply. And um, we give this to organizations and to individuals, for-profit, nonprofit. Anyone who's done something that has brought happiness and joy to people living with dementia, please apply. We'd like to hear from you.org. Okay. Well, that's what I was going to ask you to plug, but you did that wonderfully. It's a wonderful way to spend one's one's older years. I still have a job that means something. 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.

1:04:18 So it's wonderful that you have that organization where people can apply and ask for help. And the cool thing is that we share all of the best ones that come our way. 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. That I I can't wait to check it out. Yeah, modsomewords.org. And it's it's we're entering our seventh year now. Well, Marilyn's book is Don't Walk Away, a Care Partner's Journey, and it is a must read. It was a pleasure getting to chat with you today. Oh, same here. We really had a wonderful time. Thank you for bringing this perspective. 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.

1:05:03 I I think that you're going to help a lot of people with this conversation. And anyone listening who is navigating caregiving in the midst of grief or watching someone that they love change. You're not alone. These conversations exist so that we can sit together in the real, the raw, and the in between. Remember, there is always purpose in the pain, and there is hope in the journey. And as we always say at Real Talk, we will see you next time.