Latest / Voices for Voices® / Dementia Care Doesn't Have To Look Like Loss | Episode 456

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Dementia Care Doesn't Have To Look Like Loss | Episode 456 · Voices for Voices®

• 0:02
  Voices for Voices, Justin Alan Hayes: Hi everyone, it's Justin here, Voices for Voices.
• 0:05
  Voices for Voices, Justin Alan Hayes: Thank you so much for joining us on this episode.
• 0:08
  Voices for Voices, Justin Alan Hayes: Whether you're watching, whether you're listening, whether you're joining us from uh somewhere here in the United States or one of the over 110 countries and over a thousand cities across the world, we are grateful to have you with us, especially our guest, to uh learn more and more about uh dementia, about uh a book that uh is uh is available for for sale and just to have as as we do here on the show, just have you know transparent conversation.
• 0:45
  Voices for Voices, Justin Alan Hayes: And we know that we're gonna help uh a lot of people, uh mostly it's it's our our guest that does that.
• 0:55
  Voices for Voices, Justin Alan Hayes: So we're gonna let her speak first uh after I share a little bit about her her bio.
• 1:03
  Voices for Voices, Justin Alan Hayes: So um Marilyn Raichle uh reached out, uh which we asked people that are interested in joining the show and sharing their voice uh across the world, which is really uh it's just amazing uh that we are able to reach as many people as as we are.
• 1:27
  Voices for Voices, Justin Alan Hayes: Uh and and in a previous episode, I was uh sharing uh a little bit about uh kind of like my grief uh story about uh my dad, and that had uh struck a little bit of a chord with Marilyn and how that related to her parents, her mom and dad, who both uh developed dementia, and uh we just want to be able to share to this population that we don't we don't do it quite uh enough.
• 2:06
  Voices for Voices, Justin Alan Hayes: And and so when Marilyn reached out, I was like, oh my gosh, this is the perfect topic, the perfect um uh demographics that we we wanna we wanna reach.
• 2:20
  Voices for Voices, Justin Alan Hayes: And and so she has written a book called Don't Walk Away, a care partner's uh journey, and you can get that for yourself, and I'm I'm sure Marilyn will talk about that at don't walkaway.net and she's really here additionally uh to uh talk about uh an organization called the Art of Alzheimer's that she founded and talking about not walking away when somebody has Alzheimer's or even another disease, which sometimes happens where um okay uh a person is diagnosed with dementia, and then uh sometimes it it can feel like uh the person is being neglected, and uh we're gonna let Marilyn talk about that, and she's also uh spent a part of her career creating community through the arts, founding the Seattle International Children's Festival to quote, help young people embrace global cultures and later foolproof, a festival dedicated to comedy and resilience.
• 3:49
  Voices for Voices, Justin Alan Hayes: So, all that to say, welcome to the show, uh Marilyn Raichle, thank you for joining us.
• 3:58
  Speaker 1: Oh, it's a pleasure to be here, and I'm anxious to hear about your story as well.
• 4:03
  Voices for Voices, Justin Alan Hayes: Thank you.
• 4:04
  Speaker 1: Yeah, and and and I'm like most, probably most people in the country, if not the world, who initially was terrified of dementia um and didn't want to know anything about it, and equated it in our family basically with the death or worse than death.
• 4:26
  Speaker 1: Um there are five kids in our family, and mother told us when we were very young and kept repeating it when we, and not if, when we get dementia, I want you to walk away.
• 4:38
  Speaker 1: There's nothing you can do, we won't remember you, don't sacrifice your life for us and walk away.
• 4:43
  Speaker 1: And we all thought, okay, that makes sense.
• 4:47
  Speaker 1: They were among the lucky few who had the money to live in a really good continuing care facility, which makes a huge difference there.
• 4:55
  Speaker 1: Um and so my whole experience was built on fear um and reluctance to know or be engaged in any way with it.
• 5:10
  Speaker 1: And that's true of so many people, they think of it as the end of a life.
• 5:15
  Speaker 1: And what I've learned after 10, 11 years with mom and dad, that these are people who are living with dementia.
• 5:26
  Speaker 1: They are not suffering from dementia, and that's a huge difference when you make that leap because you don't see them as oh, poor, sad creatures, but as vibrant living human beings.
• 5:38
  Speaker 1: And so my whole purpose right now is to help change the public understanding of dementia and Alzheimer's from despair to hope.
• 5:51
  Speaker 1: And that's hard for most people to get their hands around.
• 5:56
  Speaker 1: Um, and and I am incredibly lucky that I got to do this with mom because I didn't want to because I was supposed to walk away, just like all of us.
• 6:06
  Speaker 1: But um after working in the arts for years, I went back to graduate school thinking I could do even more wonderful things.
• 6:14
  Speaker 1: And um, when I came back, it was during the recession and there were no jobs.
• 6:19
  Speaker 1: So my family said, okay, we're going to chip in, we're going to keep you afloat, and you're going to be the family caregiver.
• 6:26
  Speaker 1: You have no idea how much I didn't want to do that, but I didn't even know what that meant.
• 6:33
  Speaker 1: And I have to say at the outset that I was never a family caregiver.
• 6:38
  Speaker 1: These are people who have the toughest job on the planet.
• 6:42
  Speaker 1: They're juggling family and children and jobs and the person they love who is dealing with dementia.
• 6:49
  Speaker 1: Overextended with very with almost no support from us.
• 6:54
  Speaker 1: And I could talk for volumes about that, but I won't.
• 6:57
  Speaker 1: But but I was lucky because where mom was living and dad, they took care of most of their care.
• 7:06
  Speaker 1: I got to be the person who hopped in um to keep them engaged and to take them to doctors' appointments to do the bare minimum.
• 7:17
  Speaker 1: And I was not a good quote caregiver.
• 7:21
  Speaker 1: Um, and so this this this experience of mine of becoming a my journey as a care partner changed my life completely.
• 7:32
  Speaker 1: It's the best, most wonderful thing I've ever done.
• 7:36
  Speaker 1: Um and I'm so lucky.
• 7:40
  Speaker 1: That's the one word I would say.
• 7:41
  Speaker 1: I was so lucky I got to do this with mom.
• 7:47
  Voices for Voices, Justin Alan Hayes: Yeah, it's I I feel can relate to that with the end of life uh hospice care with with with my dad that uh he wanted to stay in stay in the house, and when it got to the the final days, uh I'm I'm and I'm with you even with my grandma and grandpa's uh you know caregivers, uh it it takes a special it takes just a special person.
• 8:27
  Voices for Voices, Justin Alan Hayes: I mean you're seeing things, you're turning, you're doing you're doing things, and you're like, oh my gosh, like should somebody else be doing this, and I I know at least here in the Northeast Ohio area, and it may be across the United States, and even you know, obviously reaching Seattle, is that there's a shortage of people to do this type of work that luckily I with the with the voices for voices and the nonprofit and was able to do a lot of remote work.
• 9:08
  Voices for Voices, Justin Alan Hayes: My sister was able to as well, and then my mom, of course, being um like my dad's wife, uh, we we the last three weeks of his life, we were doing his medication, we were turning uh, we're changing his type, we're doing all these things, and with me and my mental health, uh it was it was just a lot for me.
• 9:38
  Voices for Voices, Justin Alan Hayes: It overburdened me.
• 9:39
  Voices for Voices, Justin Alan Hayes: I had to get an increase in uh my medication I taken, and I mean everything uh worked.
• 9:47
  Voices for Voices, Justin Alan Hayes: Well, I mean he passed, but everything worked out where I the team that I have, and I I think I recommend that as I'm sure you would, that you know, if if there's something that you yourself are going through as a caregiver, whether that's your full-time job or whether you're you're popping in, that you know, that that we're honest with our our doctors and the people that help us so we can do whatever we we can.
• 10:21
  Voices for Voices, Justin Alan Hayes: And I I my mom says I did as much as I could.
• 10:27
  Voices for Voices, Justin Alan Hayes: I felt like I did as much as I could, but my sister was like, you could have done more, and you're just sitting around, and a lot of it, like I was I was going through the emotions.
• 10:39
  Voices for Voices, Justin Alan Hayes: Like, I mean, we were all going through the emotions, we all were just handling it a little bit differently.
• 10:44
  Voices for Voices, Justin Alan Hayes: And so there were times like towards the end when we were had to administer more morphine and and this is you know a new kind of Tylenol.
• 10:56
  Voices for Voices, Justin Alan Hayes: And like I I just I just I just couldn't do it, and I felt so so horrible, but I I just wanted to I just I just couldn't do it.
• 11:06
  Voices for Voices, Justin Alan Hayes: So I know that for me as a 44-year-old uh going going through it, uh it's incredibly incredibly hard.
• 11:17
  Voices for Voices, Justin Alan Hayes: And the way that you were able to get through it, especially with what you were sharing about your family of walking away.
• 11:30
  Speaker 1: Yeah.
• 11:30
  Speaker 1: I mean, that it was interesting that that my it my whole family was heavily influenced by Scottish Calvinism, which regarded that was on mom's side of the family, and that they regarded emotions as an indulgence, um, and that you were basically supposed to ignore problems and not talk about them.
• 11:53
  Speaker 1: So that sort of underlied everything.
• 11:55
  Speaker 1: That's part of mom's just walk away.
• 11:57
  Speaker 1: Um, and and that was difficult for me.
• 12:03
  Speaker 1: Dad had Parkinson's, so he was developing dementia from Parkinson's as well.
• 12:08
  Speaker 1: And then mom started to develop um memory loss in her early 80s, and so they were both living there.
• 12:16
  Speaker 1: And when I became the quote caregiver, um, and I didn't know anything and I didn't want to know anything.
• 12:23
  Speaker 1: So we sort of coexisted and I did the bare minimum, and I looked at the clock with mom's words always in the back of my mind, walk away.
• 12:34
  Speaker 1: And it was we sort of achieved a middle ground where mom, who considered herself dad's caregiver, and dad, he wanted the best for mom, mom wanted the best for dad, and I wanted the best for both of them.
• 12:51
  Speaker 1: So we met in the middle and we it was shared needs, shared goals that we you know, just going.
• 12:58
  Speaker 1: And I I started to slow down and I started to listen instead of trying to walk away, but not.
• 13:05
  Speaker 1: Um, and and that went on for about a year.
• 13:10
  Speaker 1: Um, and then dad at the age of 89 died.
• 13:14
  Speaker 1: Um, and we were in the room, dad was lying on the bed, mom was asleep, my brother and sister and I were there, and we thought, should we wake her up?
• 13:26
  Speaker 1: She's not gonna remember this.
• 13:28
  Speaker 1: We're gonna have to remind her of this every day.
• 13:31
  Speaker 1: But they've been together for 72 years.
• 13:34
  Speaker 1: So we woke her up, and I have never, ever seen tears like that.
• 13:39
  Speaker 1: There was also a rule in the family that when someone died, you were not supposed to have funerals, you were not supposed to have memorial services, and you were not supposed to cry.
• 13:49
  Speaker 1: Very strict.
• 13:51
  Speaker 1: So, mother, I'd never seen her cry before.
• 13:54
  Speaker 1: So it was just overwhelming.
• 13:56
  Speaker 1: And finally she calmed down and got her back to sleep.
• 14:01
  Speaker 1: And I got back the next morning and I got there early and she remembered, and we talked about dad and what a wonderful life they had.
• 14:09
  Speaker 1: And the second morning I got there early and she remembered, we talked about dad.
• 14:14
  Speaker 1: And the third morning I got there and she was lying on her bed and she was crying.
• 14:20
  Speaker 1: And she said, I just want to be with your father.
• 14:23
  Speaker 1: And 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.
• 14:30
  Speaker 1: And she laughed and she said, Well, that's life.
• 14:33
  Speaker 1: And from then on, she sort of put it in the box.
• 14:38
  Speaker 1: We preferred to think that she had forgotten, but she never forgotten.
• 14:41
  Speaker 1: It was always deep in her and but she started to rejoin the world again.
• 14:47
  Speaker 1: And she was incredibly gregarious, and she liked to have friends.
• 14:52
  Speaker 1: Um, she was curious, she was funny, incredibly competitive.
• 14:58
  Speaker 1: And I always felt that who she was, essentially, was always there, always intact, different, but intact.
• 15:05
  Speaker 1: And so I took her to a painting class because she was so bored.
• 15:10
  Speaker 1: And they had this painting class for people who were living with memory loss.
• 15:14
  Speaker 1: And I took her to this class and she thought that painting was stupid.
• 15:19
  Speaker 1: She she didn't want to go, but I took her there and I didn't expect anything.
• 15:23
  Speaker 1: But her first painting was just wonderful.
• 15:26
  Speaker 1: I was amazed.
• 15:27
  Speaker 1: And I became so interested in what she was doing that it it sidestepped my fear.
• 15:36
  Speaker 1: And so I started to learn.
• 15:40
  Speaker 1: I started to relax enough to actually slow down and learn.
• 15:45
  Speaker 1: And the first thing I learned was she was living with dementia, she was not suffering from.
• 15:52
  Speaker 1: She was still living with invention and wit and humor.
• 15:55
  Speaker 1: And and it was fascinating.
• 16:00
  Speaker 1: And every time I would share her art with people, their reaction was almost always the same, which was, I have no idea.
• 16:09
  Speaker 1: Because it was so interesting her art.
• 16:13
  Speaker 1: And that's when I realized that Alzheimer's is scary, but art isn't.
• 16:21
  Speaker 1: So anytime I wanted to talk about it or share mom's experience, I would start with the art first, because the art was so interesting, it would enable them to relax and want to learn more rather than shutting down.
• 16:36
  Speaker 1: And so that's when I started the art of Alzheimer's, which it's in abeyance now because I have a new career.
• 16:42
  Speaker 1: But but at the time it was like, okay, I'm gonna use mom's art.
• 16:46
  Speaker 1: Every Tuesday was painting day.
• 16:48
  Speaker 1: I would get there, I would take the her painting from the previous week because otherwise she'd throw it away.
• 16:54
  Speaker 1: Oh so but then I would start sharing it.
• 16:58
  Speaker 1: But I will admit that I cared more about the art at that point than I did about mom.
• 17:03
  Speaker 1: Um and that changed one day when I started to look at her art because at the beginning, when she first saw a flower, she would paint a flower.
• 17:15
  Speaker 1: But then she started to transform things.
• 17:18
  Speaker 1: So zucchini became a dragon.
• 17:20
  Speaker 1: Um just really, and you always wondered what was she thinking?
• 17:25
  Speaker 1: But I think she was just channeling emotions and her wonderful sense of you.
• 17:30
  Speaker 1: Whimsy.
• 17:31
  Speaker 1: Um but I started to do art exhibits and share the art with, you know, hundreds, if not thousands, of people just to get that reaction.
• 17:40
  Speaker 1: Um but then one day her art just started to change.
• 17:45
  Speaker 1: It started to my uneducated eyes looked like it was deteriorating.
• 17:50
  Speaker 1: The same scratching lines, the same colors, the same image.
• 17:55
  Speaker 1: And so I got there early for the next painting class, and we did everything she liked to do.
• 18:01
  Speaker 1: We played Scrabble, which we did every day until she died, and we took a walk and we looked at the view.
• 18:09
  Speaker 1: And I just spent time with her listening to her.
• 18:12
  Speaker 1: And then I took her to the painting class and her painting completely changed.
• 18:16
  Speaker 1: These warm animal images appeared, different colors, and that's when I had my big breakthrough moment when I went, Oh, I get it.
• 18:26
  Speaker 1: I have a role to play in this.
• 18:28
  Speaker 1: We're partners.
• 18:29
  Speaker 1: And that's when I made the shift from being a caregiver to a care partner.
• 18:34
  Speaker 1: And together, together, we built a better life for both of us, me included, me even more than mom.
• 18:42
  Speaker 1: Um and for the next nine years, I was her care partner, and it it was astonishing.
• 18:49
  Speaker 1: And and every day I learned something new, either about caring and being with people who live with dementia, or about myself.
• 19:01
  Speaker 1: And and I became a much better, nicer person than I was, because I was raised basically to win and to beat other people, not to listen to other people, but to beat other people and to win.
• 19:19
  Speaker 1: And all of a sudden I was now trying to relax and calming down and listening.
• 19:26
  Speaker 1: And we were living in the moment, and and one of the first lessons I learned was it's not about me, it's about her.
• 19:35
  Speaker 1: I called her up one day early on in this, and I'd had a tough day at work, and I started to complain about work, and I could feel her pulling back, and she was starting to absorb my stress and my tension.
• 19:51
  Speaker 1: And that's when I I stopped immediately.
• 19:55
  Speaker 1: And last time I cried about this, but it was it was and that's when I realized it's not about me, it's not about how I would feel if I had dementia, it's about mom and how she feels.
• 20:10
  Speaker 1: And it was just every day I learned something new.
• 20:15
  Speaker 1: And and one of the really great things I learned also early on is that I just assumed that she would be excited to see me because after all, I'm her daughter.
• 20:26
  Speaker 1: But she was far more invested in all the people who were companions in assisted living that in fact she had a new family.
• 20:34
  Speaker 1: And fortunately for me, they were willing to accept me as a member of their family.
• 20:40
  Speaker 1: So I had a new family, had six new adopted mothers, and they were as important to my life learning how to live as mom was.
• 20:51
  Speaker 1: It was just the most important thing I learned was to listen and to ask questions.
• 21:01
  Speaker 1: I used to tell people who were frightened, I said, just ask a question and hop on for the ride.
• 21:07
  Speaker 1: And so it was just this this constant nine years of learning, nine years of of being calm and present and and learning how to be a better human being.
• 21:23
  Speaker 1: And so I owe this all to I owe it number one to mom's heart, but everything I am now I owe to mom.
• 21:30
  Speaker 1: Um and it was it was really wonderful to get to know her again because I never got to know her really growing up because she was very busy, she had five kids, and um we never actually the word love, for example, was never spoken in our family ever.
• 21:53
  Speaker 1: And once uh I lived not far from where she lived in assisted living and This is before she developed dementia.
• 22:03
  Speaker 1: And I was in this house, and which I shared with other people, and mom came by and came up to my room and lay down next to me because I was taking a nap.
• 22:14
  Speaker 1: And she told me she loved me.
• 22:18
  Speaker 1: And I'd never heard that before.
• 22:21
  Speaker 1: And I just remember crying.
• 22:24
  Speaker 1: And she said, I guess I should have said that more often.
• 22:29
  Speaker 1: And we never talked about it.
• 22:32
  Speaker 1: But our lives together as care partners unlocked all that love that had been waiting so long to express itself.
• 22:41
  Speaker 1: And that's one reason this experience for me it was so wonderful.
• 22:47
  Voices for Voices, Justin Alan Hayes: Oh that is so incredible to share that.
• 22:54
  Voices for Voices, Justin Alan Hayes: Thank you.
• 22:55
  Voices for Voices, Justin Alan Hayes: Uh the the word love in my family was used mostly by my mom.
• 23:07
  Voices for Voices, Justin Alan Hayes: Uh later on by my dad, we just we could just sit in a room and I don't know, like watch TV and we wouldn't say it very much.
• 23:19
  Voices for Voices, Justin Alan Hayes: We would just uh like have like I don't want to say like a mutual understanding of what we were doing, but we just never talked a whole lot.
• 23:30
  Voices for Voices, Justin Alan Hayes: So when it and his uh his diagnosis was small cell uh cancer and it just just spread and just found out one visit to ER that it was already stage four in less than a year, and uh and we started having time before got to the hospice point where you know we were we were talking and and he said and it it nothing a sport isn't very important, but growing up he did everything to try to help me.
• 24:22
  Voices for Voices, Justin Alan Hayes: He always helped me, it didn't have to be a s just a sport, but the things that the thing that he said like was I'm I'm sorry that I was so harsh on you playing ball.
• 24:38
  Voices for Voices, Justin Alan Hayes: And I was just like, don't worry about it.
• 24:42
  Voices for Voices, Justin Alan Hayes: I mean and he wasn't harsh, it wasn't abusive, not none of that.
• 24:48
  Voices for Voices, Justin Alan Hayes: It was just like that that was just something he wanted to see me succeed in, and and that was the the thing that I I started to say towards the end of his life.
• 25:01
  Voices for Voices, Justin Alan Hayes: You know, that it you know that I loved him and wish I would have said it more.
• 25:07
  Voices for Voices, Justin Alan Hayes: Um and and he's bringing up you know me growing up and playing like little league baseball.
• 25:16
  Voices for Voices, Justin Alan Hayes: Like that he was it felt like that was what he wanted to share with me that that was eating at him at some some level.
• 25:27
  Voices for Voices, Justin Alan Hayes: Um and I just I just broke down and cry I mean many times, but especially for that, I'm like, oh my gosh, like there's there's so many other things that I didn't I I didn't know what to expect, and for him to say that it was uh very I must see it was interesting, but I I I didn't know what to to expect and for him to to say that knowing how short a time he has uh been must have been eating at him for years, I guess.
• 26:04
  Voices for Voices, Justin Alan Hayes: Um and oh my gosh, the fact that uh when you just your mom came in and laid like next to you, that's uh that's that's so beautiful.
• 26:17
  Voices for Voices, Justin Alan Hayes: I mean, that she she did that, and like you said that the word, you know, I love you wasn't really expressed a lot of in in your life up and till kind of the the these points.
• 26:33
  Voices for Voices, Justin Alan Hayes: And and I love how you said that you know it's not about you found out like it's not about me, it was about her.
• 26:43
  Voices for Voices, Justin Alan Hayes: And that was the same thing I was felt about my dad.
• 26:45
  Voices for Voices, Justin Alan Hayes: I was like, you know, it doesn't matter how many shows, how much money we raise, how many people we help.
• 26:53
  Voices for Voices, Justin Alan Hayes: I mean, that all matters, but right now it's just a human being going literally minute to minute, not knowing what what's gonna gonna happen.
• 27:06
  Voices for Voices, Justin Alan Hayes: Uh and uh it's uh sorry, I'm just uh reminiscent when you're saying it's so important.
• 27:16
  Speaker 1: It's so important.
• 27:17
  Speaker 1: I mean, I wish when you talked about your father, there's so many things I wish I'd done with my father before he died that I didn't know until I'd been through this with mom.
• 27:30
  Speaker 1: Because, you know, I mean, the sad thing is when mom told me she loved me, instead of us talking about it, we both she said, I wish I'd said that more often.
• 27:38
  Speaker 1: That's the last time we spoke about it.
• 27:40
  Speaker 1: I should have followed up with dad.
• 27:43
  Speaker 1: There's so many things I could have done that I didn't know if I knew then what I know now.
• 27:49
  Speaker 1: I could have told him I loved him.
• 27:51
  Speaker 1: That would have been amazing.
• 27:54
  Speaker 1: I I could have I could have just been with him because he wasn't the happy, cheery person that mother was.
• 28:02
  Speaker 1: But I could have just been with him so he knew he wasn't going to be abandoned, because that was his fear.
• 28:09
  Speaker 1: Um but I didn't because it was just we were always pulling back from anything, having to do and and and I, you know, I think we're a little bit extreme because of the whole Calvinist thing, you know, but but but it was it was learning all of that with mom.
• 28:27
  Speaker 1: And so it's now sort of paying it forward.
• 28:30
  Speaker 1: Um, I've often thought I wish if if I had time, I would probably go to assisted living and adopt a mother, just just someone to be, because it's just it's it's so rewarding for both people.
• 28:44
  Speaker 1: But it was it was so many things that we could have done, but we learn.
• 28:51
  Speaker 1: Um and with with mom, it was those years because she had adjusted to her life with dementia.
• 29:01
  Speaker 1: She was living her life.
• 29:03
  Speaker 1: It took me a while to adjust.
• 29:05
  Speaker 1: She was light years ahead of me.
• 29:07
  Speaker 1: Um, but but once I made that that shift for me, then it happened pretty quickly because now it wasn't just once a week I was visiting mom, it was every single day.
• 29:20
  Speaker 1: She was an integral part of my life.
• 29:22
  Speaker 1: Um and that every day, I mean, there was just for example, one of the things I did in when I got there, I gave everybody shoulder massages.
• 29:34
  Speaker 1: And I wouldn't, I just I would ask first because touch is something that's lacking in a lot of, you know.
• 29:41
  Speaker 1: And and so I would ask first, and a lot of people wouldn't know what I was talking about, but they'd see the person next to them swooning with pleasure, and they would want one too.
• 29:50
  Speaker 1: Um, and so one day, and I did this for years, um, even the staff wanted shoulder massages.
• 29:58
  Speaker 1: Um and one day I got the coolest compliment of my entire life from Gloria.
• 30:05
  Speaker 1: She came up to me, that's not mom, but mom didn't like to get shoulder massages.
• 30:10
  Speaker 1: For some reason, it was sort of like, I don't want you to do that.
• 30:13
  Speaker 1: I I'm busy.
• 30:13
  Speaker 1: We need to do my stuff.
• 30:15
  Speaker 1: That's that's their stuff.
• 30:16
  Speaker 1: But Gloria came up to me and she said, Do you tuck your wings in a handkerchief when you're not here?
• 30:24
  Speaker 1: Isn't that wonderful?
• 30:27
  Speaker 1: It was just so sweet.
• 30:29
  Speaker 1: And it so everything I was just and I was having fun, and this always shocks people.
• 30:38
  Speaker 1: When I told people that I went to assisted living to see mom to relax, and they would look at me again, that's the difference between a full-time family caregiver because be and with somebody who has uh their loved one who's living in a good assisted living facility.
• 30:56
  Speaker 1: Um but I went there because in assisted living it wasn't stressful, it was peaceful because there were no deadlines, it was just the moment.
• 31:11
  Speaker 1: We were living in the moment, and each moment was so peaceful and loving.
• 31:17
  Speaker 1: And the other thing, I mean, just the opportunity in assisted living to express and receive love, because again, that wasn't part of my upbringing, and that was just a revelation.
• 31:33
  Speaker 1: But then mother was teaching me all sorts of things.
• 31:35
  Speaker 1: We we had a hard time in our family accepting compliments, again, Scottish Calvinism.
• 31:41
  Speaker 1: If you accepted a compliment, it indicated that you thought you deserved one.
• 31:46
  Speaker 1: So when we got a compliment, we would change the subject preferably to something depressing.
• 31:53
  Speaker 1: After that, for a few experiences with that, you sort of get out of the habit of giving somebody a compliment because it's so depressing.
• 32:02
  Speaker 1: And mother, on the other hand, started every conversation in assisted living with a smile and a compliment.
• 32:09
  Speaker 1: And years later, because that was something Mother did.
• 32:13
  Speaker 1: And then years later, I started doing it myself, and it was like, oh, what a revelation! My gosh, what a great way to start a conversation.
• 32:21
  Speaker 1: Mother was, we played, so we played Scrabble every day.
• 32:29
  Speaker 1: That was a big deal, very competitive.
• 32:30
  Speaker 1: She I would get there and she said, I'm gonna beat you at Scrabble.
• 32:34
  Speaker 1: I said, Well, I'm gonna beat you at Scrabble.
• 32:37
  Speaker 1: So we would play Scrabble, and she got to the point where she would ask me if she could give me her soul if I gave her better tiles.
• 32:48
  Speaker 1: Oh I mean, she would make me laugh.
• 32:54
  Speaker 1: She was always making and I told her, I said, You're gonna need your soul, mom.
• 32:58
  Speaker 1: If when you get to heaven to see dad, you're gonna need your soul.
• 33:01
  Speaker 1: And she said, Well, maybe we could fight for it.
• 33:04
  Speaker 1: I said, Well, I'd rather not fight you for your soul.
• 33:07
  Speaker 1: I think you should keep it.
• 33:08
  Speaker 1: And she said, Well, maybe you could give me your I could give you my soul, and then you could come to heaven with me.
• 33:14
  Speaker 1: And then I could grab, I could grab it, and then you could run away.
• 33:19
  Speaker 1: I said, But mom, that would require me to die too.
• 33:23
  Voices for Voices, Justin Alan Hayes: Yeah.
• 33:24
  Speaker 1: She said, hmm.
• 33:24
  Speaker 1: So she was trying to think of some way she could she could give me her soul.
• 33:28
  Speaker 1: And I said, You keep it.
• 33:30
  Speaker 1: You're doing just fine with Scrabble.
• 33:32
  Speaker 1: Um and and it just so it it and again that a person whose mother started to develop dementia asked me once, she said, you keep saying that it's so important to share joy with your mother or your father.
• 33:47
  Speaker 1: And and I think it's important because if you share an activity that they're enjoying, that you're enjoying, but most important that they're enjoying, you see that person that you thought was disappearing emerge because there's a person having fun and enjoying life.
• 34:06
  Speaker 1: And this one person said to me, I don't have time to do what you did with your mother and your art.
• 34:12
  Speaker 1: And I said, Well, all right, pick one thing you like to do.
• 34:15
  Speaker 1: It could be singing a song, it could be taking a walk, it could be looking at the sunset, just one thing and take five minutes and enjoy it.
• 34:25
  Speaker 1: And you might be surprised, you might see that person you thought was disappearing is there, and you might want to do it again.
• 34:33
  Speaker 3: Oh my god.
• 34:34
  Speaker 1: So she tried it for a few few months, and she came back and she said, Well, that's nice, that's good.
• 34:39
  Speaker 1: But again, that the resistance, there's such a deep, deep commitment to the dark side of dementia that they're not there.
• 34:50
  Speaker 1: Um I did an interview years ago with somebody on a radio station, and I was talking about my life with mom and about these things we were doing that was so happy.
• 35:02
  Speaker 1: And at the end of every story, she would look at me and say, Yes, but isn't it all?
• 35:07
  Speaker 1: And I said, Well, you think that, but then you talk about something else, and then I would finish with that and she'd say, Yes, but isn't it terrible?
• 35:18
  Speaker 1: Okay, this is but but I met this man once and he was telling me about his visiting his wife, who lived in a nursing home, and he said, When I see her, she tells me she loves me and she kisses me.
• 35:35
  Speaker 1: And when I look in her eyes, there's nothing there, and I leave in tears.
• 35:40
  Speaker 1: And I thought to myself, why couldn't he see what I most likely would have, which is a woman with something to say?
• 35:48
  Speaker 1: That if your entire framework is nothing but sorrow and loss, that is all you're gonna see.
• 35:55
  Speaker 1: But if you allow yourself just once to sort of open that up and see something happy in that person's life, see that person enjoying their life, then you will see that person that you thought was gone emerge.
• 36:10
  Speaker 1: And I wish that he could have, I wish I could have gone to visit him and his wife, um, because that would have been fun.
• 36:17
  Speaker 1: Just just to sort of giving them an example, but um, I never got that opportunity.
• 36:23
  Speaker 1: But it was again, it's once I changed my mindset, because at the beginning, I wasn't seeing the person, I was only seeing the loss.
• 36:35
  Speaker 1: I wasn't hearing the thought, I was only hearing confusion.
• 36:40
  Speaker 1: But once you make, they've already made the transition.
• 36:44
  Speaker 1: Because at the beginning it's hard.
• 36:46
  Speaker 1: How long have I been like this?
• 36:47
  Speaker 1: But once they've made the transition, then it's up to you to make it.
• 36:52
  Speaker 3: Yeah.
• 36:54
  Speaker 1: Um and and so it was just and every I mean it was amazing how much I learned from mom.
• 37:03
  Speaker 1: And you hear that thing about I became the mother, she became the daughter.
• 37:08
  Speaker 1: But mom was always mom.
• 37:09
  Speaker 1: Always.
• 37:11
  Speaker 1: She was always teaching me something.
• 37:13
  Speaker 1: Once we were playing Scrabble once and she was having a hard time making words, as she did.
• 37:20
  Speaker 1: And she said, Is dog a word?
• 37:22
  Speaker 1: She couldn't, is cat a word.
• 37:24
  Speaker 1: And then finally she stopped and she stepped back and she thought a while, and then she looked at me and she said, You know, sometimes your brain just gets in the way, and then she made Jewel on the triple.
• 37:36
  Speaker 1: And I use that now.
• 37:41
  Speaker 1: When I having a hard time thinking of something or coming to some conclusion, I will stop and say, Sometimes your brain just gets in the way.
• 37:50
  Speaker 1: And nine times out of ten, the solution will come to me.
• 37:55
  Voices for Voices, Justin Alan Hayes: Absolutely.
• 37:56
  Voices for Voices, Justin Alan Hayes: Uh so how did how did the thought of wanting to uh because you you you worked in the arts, um, and then uh I I kind of equate a little bit, you know, writing a book and expressing uh you know thoughts, stories, events, uh interactions.
• 38:22
  Voices for Voices, Justin Alan Hayes: How how did you get to the point of going, you know what, I want to put some of this on on paper and I wanna I want to share it with with with people in a in a in a in a book.
• 38:37
  Speaker 1: Well, first of all, I stopped reading books about Alzheimer's and dementia because most of them are just so incredibly depressing.
• 38:44
  Speaker 2: Yeah.
• 38:44
  Speaker 1: And this is a refreshingly hopeful book.
• 38:48
  Speaker 1: I would even say joyful, but it's hard for a lot of people to get their hands around and having not experienced it.
• 38:57
  Speaker 1: But I wanted to invite people to take a walk with me and mom.
• 39:03
  Speaker 1: For people who don't think that they that a person living with dementia can have a life worth living.
• 39:11
  Speaker 1: So take a walk with me and La and discover the whip and the discover all the positives that I did and learn all the lessons I did.
• 39:25
  Speaker 1: But it was basically take a walk with us, experience this for yourself.
• 39:30
  Speaker 1: And so I had everything mom and I did for the for nine years, I wrote down.
• 39:37
  Speaker 2: Okay.
• 39:37
  Speaker 1: So so I had all these wonderful stories that I hadn't forgotten, but I also so I wrote down all these stories from the beginning of our incredibly ghoulish childhood, where we as children actually develop ways to kill my father when he got dementia.
• 39:52
  Speaker 1: So dark side.
• 39:54
  Speaker 1: Um and and then through the whole journey with mom, and all of it is illustrated by mom's art.
• 40:03
  Speaker 1: So each one of these stories is paired with one of her her paintings.
• 40:07
  Speaker 1: And behind me, you can't see it specifically, but that's mom's painting of daffodils, and and the the blossoms are snakes or snakes sticking out their long circuit tongue.
• 40:20
  Speaker 1: She's very funny.
• 40:23
  Speaker 1: Um, again, just curious.
• 40:25
  Speaker 1: So it was it was like take a walk with this.
• 40:28
  Speaker 1: You might not be so scared once you get through.
• 40:32
  Speaker 1: You might actually want to learn more.
• 40:35
  Speaker 1: And especially for people at the beginning of their journey who may have felt the way so many people do.
• 40:42
  Speaker 1: I don't want to be there, I don't want to have anything, yeah.
• 40:44
  Speaker 1: This is scary.
• 40:46
  Speaker 1: Alzheimer's is scary, art isn't.
• 40:50
  Speaker 1: It just cuts past the sphere.
• 40:52
  Speaker 1: So it was like, take a walk with us.
• 40:54
  Speaker 1: Um, and I do believe my biggest purpose professionally at this point, besides Mons of Words, is to enable people to think of dementia not with despair but with hope.
• 41:09
  Speaker 1: Um, and I don't believe that we will be able to do that unless we believe that these are people who are human beings with lives worth living.
• 41:22
  Speaker 1: Um and we are doing a terrible job in this country, many countries around the world, but and in this country it's irritating because we have the means not to.
• 41:34
  Speaker 1: They're doing a terrible job of taking care of care partners and of people living with dementia.
• 41:40
  Speaker 1: That care partners should be getting a wage, they should be getting money, they should be paid.
• 41:48
  Speaker 1: Um, that I am not afraid of the disease.
• 41:53
  Speaker 1: I am afraid of living in a squalid snake pit where you're completely disengaged.
• 41:59
  Speaker 1: I even own the domain for squalid snake pit senior care.
• 42:02
  Speaker 1: This is just my own squalid, my own sense, ghoulish sense of humor.
• 42:07
  Speaker 1: I've done nothing with it, but I own it.
• 42:09
  Speaker 1: Um and it's it's terrifying to think that one might be in a place where you're basically being warehoused and and not being given opportunities to express yourself, to share with other people.
• 42:24
  Speaker 1: Mom was very lucky.
• 42:26
  Speaker 1: She lived in a really nice place, but at the end of her experience, she was paying $16,000 a month.
• 42:31
  Speaker 1: Nobody doesn't.
• 42:32
  Speaker 1: I mean, so so I'm not afraid of the disease.
• 42:36
  Speaker 1: I'm afraid of how we in this country and many countries understand it and and make the decision it's not worth my effort to to support because people living with dementia are wonderful human beings, capable of living and thriving.
• 43:00
  Speaker 1: And they deserve our support.
• 43:03
  Speaker 1: So that's everything I do now is for that.
• 43:09
  Voices for Voices, Justin Alan Hayes: Wow.
• 43:10
  Voices for Voices, Justin Alan Hayes: Uh can you reiterate uh where people can purchase your book?
• 43:17
  Speaker 1: Sure.
• 43:17
  Speaker 1: Um, you can go to don'twalkaway.net and right on the cover it says I don't know if you're hearing the sirens behind me.
• 43:25
  Speaker 1: Um you can click on the thing saying buy this, and you can now buy it on Barnes and Noble as well as um um Amazon.
• 43:36
  Voices for Voices, Justin Alan Hayes: Oh, okay.
• 43:37
  Speaker 1: Yeah, that just happened.
• 43:38
  Speaker 1: So but that's there.
• 43:39
  Speaker 1: So you can click on that.
• 43:40
  Speaker 1: And um, and you can go to Amazon and but I I surprised I was surprised myself, I didn't know this.
• 43:47
  Speaker 1: There are tons of books called Don't Walk Away.
• 43:50
  Speaker 1: If you type in don't walk away, you actually have to add the subtitle, A Care Partner's Journey, otherwise you will be taken on this wild search and it'll be irritating.
• 43:59
  Speaker 1: So if you go to don'twalkaway.net, you'll also learn about the book, uh, you'll learn about me, you'll get to hear about podcasts that we've been on.
• 44:09
  Speaker 1: Um you'll be on there.
• 44:11
  Speaker 1: Um and so um it's it's easy.
• 44:17
  Voices for Voices, Justin Alan Hayes: Anything we we missed uh uh that you wanted uh to to share?
• 44:22
  Speaker 1: Uh it's not about you and slow down, ask questions and listen.
• 44:32
  Speaker 1: Really listen.
• 44:35
  Speaker 1: And it turns out that everything that enables people living with dementia to live better and more fulfilling lives works the same with everybody, everyone.
• 44:47
  Speaker 1: And that the concept of enduring personhood is important.
• 44:53
  Speaker 1: There are certain things that we as human beings all share, whether you have a dementia, whether you don't, our need for friendship, our need to be of value, our need to have purpose, our need to laugh, our need to love and to be like.
• 45:09
  Speaker 1: We are all human beings.
• 45:13
  unknown: Yeah.
• 45:14
  Voices for Voices, Justin Alan Hayes: I love that.
• 45:15
  Voices for Voices, Justin Alan Hayes: Marilyn Raichle, thank you so much for joining us on the the show.
• 45:21
  Voices for Voices, Justin Alan Hayes: I invite all of our viewers or listeners uh to head on over uh to to Amazon or to uh website dontwalkaway.net to check out and purchase Don't Walk Away, a care partner's journey.
• 45:42
  Voices for Voices, Justin Alan Hayes: It has been truly a pr pleasure to speak with you on this episode.
• 45:49
  Voices for Voices, Justin Alan Hayes: I uh I feel like I learned a lot from our conversation, and it helped me reminisce uh about my my loved ones and and uh and and staying in the moment is it's hard to do because the this world is it goes so fast, there's so many deadlines, there's all these things, but when we actually boil it down, we're all human beings, like you said.
• 46:24
  Voices for Voices, Justin Alan Hayes: Um, and if we just kind of treat each other like that, regardless if they have dementia or or not, uh, and whether uh let's give like one an antidote here.
• 46:41
  Voices for Voices, Justin Alan Hayes: With my my grandparents, three of the four three of the of my four grandparents uh basically had had dementia.
• 46:50
  Voices for Voices, Justin Alan Hayes: And after at the first one, it was hard because they it started out where they didn't remember they remembered me, but they didn't remember who I was.
• 47:07
  Voices for Voices, Justin Alan Hayes: They remember like the face, but then and so it's like um like this is Justin, this is your your grandson.
• 47:15
  Voices for Voices, Justin Alan Hayes: Um and and then so when the next grandparent, unfortunately, you know, got to that that stage, I just learned kind of to your point of that's the disease, that's not the person, and they recognize me.
• 47:33
  Voices for Voices, Justin Alan Hayes: And so I just sat there and listened.
• 47:36
  Voices for Voices, Justin Alan Hayes: It didn't matter if they were saying full sentences, it didn't matter if they said the same thing every time.
• 47:44
  Voices for Voices, Justin Alan Hayes: I was just merely being a kind of like with my with my dad, where we would we could be in the same room and watch a ball game for a couple hours, and we might say maybe five or six words of just feeling that warmth of another human being in the same room, or as you were uh uh mentioning, you know, you know, uh giving the massages and just you know finding a way to just just help a fellow human being.
• 48:19
  Voices for Voices, Justin Alan Hayes: And and as you as you mentioned, it it's not usually very hard.
• 48:27
  Voices for Voices, Justin Alan Hayes: It's it's ourselves, that's our like you said, it's our brains that do get in the way.
• 48:33
  Voices for Voices, Justin Alan Hayes: And I I know that from my personal experience too, where it's like once I get over myself and that, and I just just sit and listen, and and it's so lovely that you're able to spend time and do the painting.
• 48:52
  Voices for Voices, Justin Alan Hayes: And uh I I love that the uh and then the uh uh also scrabble and you know you just you find your the things that uh you connect with and then you just you just do them and you're just you're just a fellow human and uh and and you've kind of you know broke through kind of that uh you know that Calvinists uh uh you know, and it and I think it's it's uh it we all have kind of like those choices.
• 49:30
  Voices for Voices, Justin Alan Hayes: And uh when when you kind of got to that that point for yourself, it was like it's like wow, like if I just live like in in the moment that like you said, I'm at peace, they're at peace when I go there.
• 49:46
  Voices for Voices, Justin Alan Hayes: There's no deadlines like if I stay for a half hour, if I stay for an hour, whatever that that's kind of the deadline.
• 49:57
  Voices for Voices, Justin Alan Hayes: It's just like our body is saying, okay, you know, they're getting a little bit tired, or uh, I'm gonna sit with them while they eat their meal, and maybe they rest after, and uh it it's it's really just I'm just so so happy that we were able to have you on this show.
• 50:18
  Voices for Voices, Justin Alan Hayes: I I truly am because we we've we reached out to so many assisted living facilities and individuals that try to get this type of dialogue because uh we don't we don't want to we don't want to just treat the disease and treat that negative part that we we can you know be that helper, be that person that uh does something that seems so small in the grand scheme of life, but really it's a big part of our loved one or another uh you know another individual's life.
• 51:04
  Voices for Voices, Justin Alan Hayes: Uh so I'm so so happy that you reached out.
• 51:08
  Voices for Voices, Justin Alan Hayes: Uh I really am.
• 51:09
  Voices for Voices, Justin Alan Hayes: I uh and I don't know if it's certain regulations that prevent uh people working at assisted living facilities to talk, but um it's been a true blessing to be able to to talk to you, to to listen to you, to um it's uh yeah, so thank you.
• 51:33
  Speaker 1: You're welcome.
• 51:33
  Speaker 1: It was still a real pleasure for me.
• 51:35
  Speaker 1: I love talking about mom.
• 51:36
  Speaker 1: She would have liked to.
• 51:38
  Voices for Voices, Justin Alan Hayes: Oh my gosh, that's so beautiful.
• 51:41
  Voices for Voices, Justin Alan Hayes: Uh and so for our viewers or listeners, again, Marilyn Raichle has been our guest on this episode of the Voices for Voice, Voices for Voices TV show and podcast.
• 51:53
  Voices for Voices, Justin Alan Hayes: Uh, you can check out her book, Don't Walk Away, a Care Partners Journey at dontwalkaway.net.
• 52:02
  Voices for Voices, Justin Alan Hayes: And you can also go to Barnes and Noble and Amazon.
• 52:06
  Voices for Voices, Justin Alan Hayes: And if you do go to Amazon, uh you will have to uh enter a care partners journey, just so you don't go down one of those rabbit holes where I've done that before.
• 52:18
  Voices for Voices, Justin Alan Hayes: And I'm like, how'd I get here from where I started?
• 52:23
  Voices for Voices, Justin Alan Hayes: Uh so well, we hope we have a great day.
• 52:28
  Voices for Voices, Justin Alan Hayes: Uh I will I'll be sharing uh the links and and and let you know when the episode uh it should be coming out before Monday.
• 52:37
  Voices for Voices, Justin Alan Hayes: Um great.
• 52:38
  Voices for Voices, Justin Alan Hayes: Yeah, yeah.
• 52:39
  Voices for Voices, Justin Alan Hayes: So um it'll come out.
• 52:42
  Voices for Voices, Justin Alan Hayes: So the way the way things operate is uh there's uh I don't I don't think there's very much I don't think there's any editing we need to do.
• 52:53
  Voices for Voices, Justin Alan Hayes: Everything is was so just casual and and that's why I like the shows.
• 52:58
  Voices for Voices, Justin Alan Hayes: I don't I don't like doing a whole lot of editing to them just to have uh you know, just have a conversation.
• 53:06
  Voices for Voices, Justin Alan Hayes: Uh so we we go to what it's basically the aggregator who sends them out the Apple and and um Spotify and all those.
• 53:17
  Voices for Voices, Justin Alan Hayes: So uh you may find it before uh we put it out on social media because I have to wait till I get all the there's like 13 or 14 different platforms that every show goes out on.
• 53:30
  Voices for Voices, Justin Alan Hayes: Um and so I I have to wait till each one and uh so I can get the exact link so that when I put it out on social media, all the links are are are together.
• 53:43
  Speaker 1: So I'll share it with my my followers and I'll put it on the website too.
• 53:50
  Voices for Voices, Justin Alan Hayes: Absolutely, absolutely.
• 53:51
  Voices for Voices, Justin Alan Hayes: If there's anything else you know we we can do, any follow-ups uh or anything down the road, don't be a stranger.
• 53:58
  Voices for Voices, Justin Alan Hayes: Uh we'd love to continue conversation and uh just thank you for what you you've done.
• 54:08
  Voices for Voices, Justin Alan Hayes: It's uh it's it's it's it's just human being a human at the what what what can be considered a a very difficult time.
• 54:23
  Speaker 1: So yeah, thank you so much.
• 54:26
  Voices for Voices, Justin Alan Hayes: You're welcome.
• 54:26
  Voices for Voices, Justin Alan Hayes: And for our viewers and listeners, thank you so much for joining us.
• 54:30
  Voices for Voices, Justin Alan Hayes: Uh we're now over 455 total episodes in our portfolio.
• 54:35
  Voices for Voices, Justin Alan Hayes: Uh, please recommend uh to your friends, family, uh, with so many episodes we've had uh and so many different topics.
• 54:45
  Voices for Voices, Justin Alan Hayes: I guarantee you you'll find uh a few that may interest you.
• 54:51
  Voices for Voices, Justin Alan Hayes: And uh that will do it for our show.
• 54:55
  Voices for Voices, Justin Alan Hayes: So please celebrate all the voices uh in in the world that we come in contact with and uh let's be a voice for ourselves or like Marilyn with uh being a voice for her her mother and and and father and and so many others.
• 55:15
  Voices for Voices, Justin Alan Hayes: Uh so we'll see you on the next episode.
• 55:17
  Voices for Voices, Justin Alan Hayes: Bye for now.
• 55:19
  Speaker 1: Thank you.
• 55:20
  Speaker 1: Bye.