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Let’s Not Be Kidding, Episode 6 Transcript

Host: Gavin Crawford

STORIES FROM THIS EPISODE

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KYLE TINGLEY: At least she's safe in the home. A safer, I guess. It doesn't really matter if she's at home. She doesn't know she's at home. It doesn't matter. It doesn't matter that she would be with us. She wouldn't know who we were anyway.

GAVIN CRAWFORD: In October of 2019, I flew back to Alberta to help settle my mom into the new care home, Alzheimer's care. It was pretty good as far as I go. It's a little cottage. There's about ten only women in the cottage. There's ten rooms and two common rooms, and it kind of goes around in the square. And we take my mom there and she knows that she's staying there in a way, but she doesn't want to stay there.

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GAVIN CRAWFORD: What was your impression of that?

KYLE TINGLEY: If that's your question, like just a general impression, how how shit it is? Or like, what do you mean? You're asking me any specifics about it? Like.

GAVIN CRAWFORD: Boy, you kept starting to cry while we were walking around, and I wasn't crying.

KYLE TINGLEY: I wasn't crying, was I? I don't remember that. I didn't keep starting to cry.

GAVIN CRAWFORD: This is my husband, Kyle.

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KYLE TINGLEY: I think I did kind of get. After we left.

GAVIN CRAWFORD: What was it like for you?

KYLE TINGLEY: I don't know. It's it was it was what I expected. A staff member in the corner looking at her phone like the people just. All on their own, like no help, it looked like. Like it was not what I think my perception of it was that they would have, like, staff entertaining them. They wouldn't just be like, milling about just on their own, like, not knowing anything about what was happening.

GAVIN CRAWFORD: You have to sort of look around because sometimes like someone's busy with another person in a room like.

KYLE TINGLEY: You weren't several times that trip.

GAVIN CRAWFORD: Yeah.

KYLE TINGLEY: We never interrupted an event.

GAVIN CRAWFORD: Yeah, no, there's a lot less events there. Just lunch. That's the really the only event.

KYLE TINGLEY: Well, at least it's in a circle and she can roll around looking for the exit forever. Like at least she's because she only remembers 2 seconds anyway. So it's like. I don't really know what to say about it. It's terrible. It's terrible. But. What else can you do?

GAVIN CRAWFORD: I'm Gavin Crawford. This is. Let's not be kidding. Episode six. The bus stop at the end of the world. It sounds cavalier, but it eventually happens. There comes a point when it just becomes untenable to keep the person at home. You think, you think in your mind. There must be a way that I can keep this person in their comfortable environment, in their house. And then you go through the math and think what it would take to make it safe for them so that they couldn't fall. They couldn't burn the house down. All of which are crazy, real risks. And then you just do the math of how many people it would take, how many hours they would need to be there. And it becomes almost impossible. And you talk to your family, and everyone has different ideas and then you start contacting places and then you start going to visit places and you have an idea in your head that you're going to find the place, the perfect place, where they'll love to be. You know, there's an Alzheimer's village that they've built in Denmark, and it sounds wonderful where they've recreated a whole town and the dementia people wander out in the town and they see the mailman and they don't know it's the mailman, but they don't care because they're just going about their merry way and they're super happy. And it doesn't matter that they can't remember anything. And that's the place you want to find. And it doesn't exist. Because then you go to a place that's like that place and it's wonderful and there's books around and comfy chairs and things for people to do. And then you go into the dementia wing. And there's books around and comfy chairs and no one is using them. Because they don't remember what a book is.

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KYLE TINGLEY: Like only very rich people could afford the care that an Alzheimer's person you would like to give them. You'd have to be a multimillionaire to afford what you need to do. And even then it's just managing like a panic of no memory, like when they don't remember you or where they are or what's happening. What kind of care can you give them that is at all helpful.

GAVIN CRAWFORD: I want to talk to you. I want to talk to you about the bus stop at the end of the world.

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DAVID CARROLL: Wait hang on.

GAVIN CRAWFORD: This is my producer, David Carroll, who has diligently sat through hours and hours of interview and tape of me talking about my mom and who's been through the same thing with his dad. And I remember when I first was dealing with moving my mom into a care home. We talked a little bit about it, and he sent me a picture once. A picture of a bench. Well, you describe the picture and tell me about the title was Dave.

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DAVID CARROLL: I mean, it's the saddest picture I have. And it was taken just after we moved my dad into into a home in Peterborough. And it was in the basement. You know, the locked in ward was down in the basement, which opened up onto a garden. And so that was nice. And there was the TV room where everybody was just sitting in their wheelchairs, just, you know, glazed looks, looking at that at the television. But then there was this one sort of whimsical corner that was painted with with all these sort of rainbow of colors and a blue sky on the wall. And there was a little bench there and there was a painted on bus stop. And so, you know, it was like the only joyful thing in this otherwise depressing environment. And so we sat my dad down on the bench and we we all took pictures beside him. And it was, you know, the last he was no longer living at home with mom. And it just felt like it was the bus stop at the end of the world.

GAVIN CRAWFORD: I remember that. Just you titling that photo. Here's a picture of the bus stop at the end of the world and seeing the rainbow at the bench. And your dad, on it.

DAVID CARROLL: He was, he was grinning.

GAVIN CRAWFORD: Smiling here, waiting for whatever bus was never coming. Yeah.

DAVID CARROLL: And he had he had no idea that he'd just left home permanently.

GAVIN CRAWFORD: It's amazing what your brain does, though, where you just try to find it because it's so dark. The bus stop at the end of the world is the darkest thing. But coming from you is like whimsical and nice and also literally the best that you can get.

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DAVID CARROLL: You have to find a way to reframe these things for yourself. There's so much sad already, like that awful moment when when you have to leave your parent and, you know, you get to the door and you know, the key code to get out and and your parent is standing there with you and you enter the key code and you open the door and you try to slip through it, It's like, okay, okay, goodbye, goodbye. And and they want to come with you. And you literally had to close the door in their face.

GAVIN CRAWFORD: Yeah. There's no way for you not to feel like you're a villain in a Roald Dahl book, dropping their kid off at some horrible boarding school called, like Miss Murders, Murderous boarding school. You know what I mean? And then the kids there, and you're like, All right, see you later, Charlie. Well, you'll be home at home for Christmas. Don't worry about it. Have a wonderful time. And meanwhile, there's, like, you know, a creepy janitor with a big pair of scissors behind me, like we'll take good care of him. Like, that's just what you feel like no matter how nice the place is.

DAVID CARROLL: And the harder part is when you're leaving and you've left your parent behind and you're leaving, going back home with your other parent, like in your case, you're with your dad or I'm with my mom, like arm in arm. And and we're both desperately sad and you're heading to the car and yet you're unable to talk about it or maybe you're able to talk about it. It's just like, okay, well, now let's get on, get on with our day. Dad's back there in that place.

GAVIN CRAWFORD: No, and you don't really talk about it. You can't talk about it. Why do you leave? Because you hit the car and it's so weird and sad that you have to, like, literally be like, have you been watching Star Trek the new one? And you just you completely change the subject. I play a lot of like Dungeons and Dragons type game video. At the beginning of it, the weakest enemy walks up and like swipes you at you're just dead. But, you know, after hundreds of hours of smithing, imaginary armor and dragon scale, things like that, you build up an armor rating of like 140 where you basically, like, walk in and there's like hatchets smashing into you. And it takes about like one health point off and you're just like, I got some solid armor now. And that's kind of what happens at this point. Your armor is so thick. I think that's why it's hard to talk about with other people because to me, the bus stop at the end of the world is very funny because I also now have that thick of armor so I can meet you where you are and find that dark and funny and just wild. But if we say that to somebody who hasn't been playing the game for 100 hours and doesn't have dragon scale armor, they're mortally wounded. It's too hard.

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JANN ARDEN: I thank Jesus, she never asked to come home. Her brain didn't do that.

GAVIN CRAWFORD: That's Canadian superstar Jann Arden.

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JANN ARDEN: When she went in, she said to me, and it was the third floor of this building. It's a locked memory floor. And I have a little fob to go up and see her. But even the first day she was in there, we had like her couch in there and a little single bed. And we put some of the pictures up from home on the walls. But I'm like, She's never going to buy this. And I said, Well, mom, we've hired you a full time waitress, which really she loved that. I said, waitress. And I said, They're going to bring you whatever you want, whenever you want. You said that buzzer. Whatever. Well, forgot. Well, you know, dad bought this building for 1500 dollars in 1967. I'm like, That guy was a thinker and a doer. My dad was an alcoholic our entire lives. And what's really laughable to me still makes me laugh. I would talk once in a while about Dad drinking and God, blah, blah, blah. He did this or that, or I remember him trying to make me learn how to turn. Your dad never had a drink in his life! I'm like, What is happening here?

SINGER: (humming)

GAVIN CRAWFORD: I feel very lucky in my life because there's only been a couple of times, I think, where I literally have. Felt. Like heartbreak. You know, the feeling where you actually feel your heart. It feels like it's literally breaking. The first time someone breaks up with you and you're so in love with them, you you think I'll never recover from this and you literally feel that heartbreak. And I don't think I felt quite that way again until once. Early on, probably a month after my mum first went into the home, I went back again because I could. And luckily I did because it was just before COVID hit. So I had gone back in January, January of 2020, not knowing what was coming in March, two months later, and spent some time with my mom in the home. And at that point we could take her out and she can go for a drive and she like to go for a little drive around. So we would drive around town and then go back just to seem like we had gone somewhere. But then I had to go and. She just started crying. And just saying, like, why does why doesn't anyone care about me and why can't I go with you? And I had to leave. I mean, not right then, but eventually I had to leave and... Spoiler alert. If your loved one has dementia, that will happen. They will cry and say why and it will break your heart. I mean, none of this is funny and none of this is happy. This is the part of the story where it's not it's not hilarious. And this is usually the point in Alzheimer's, too, when a person needs to be put into care where things really start going haywire. You know, hallucinations start and things start to get crazier than you could ever imagine. I remember one of the first nights we were there, we took my mom in and. I think she had been there a couple of days and they were trying to balance her medication to something that would be calming. But she would say, you know, crazy, crazy things like she would be standing there and she would be like, is anyone going to go get that girl? And you're like, I'm sorry, I'm what girl should be like. Well, there's a little girl dead in the middle of the road. You just sitting there like, is anyone going to help her? And there's no one in the road. You can't even see the road. You don't know what she's looking at. And you just try to distract or try to calm her down. Oh, and there's ten ladies in this space, and they're all at sort of different stages of dementia from like slightly catatonic ladies who just sort of sit and rock to the sort of fun, flirty old lady that, you know, every time I pass by would be like, Hello, cowboy. Saddle me up and say just outrageously filthy things to me. Like, I'd be walking my mom in a circle and she'd be like, oh, lucky you got a boyfriend, huh? And I was trying to get my mom settled to sleep for the night. During the first week, she was sort of in the place and having to sleep there overnight and she would not go to bed. She did not want to stay there. She was pretty wily for the first two weeks trying to look for an escape route. I remember her sidling up to another woman who was in the place and just sort of casually saying like, you know how to open these doors, huh? You know, get these doors open. And the woman said, no, we can't open them. And my mom just looked at her and very harshly said, well, you're no use. So this is bad mood, Mom. And I was trying to get bad mood mom into bed after she had insulted the other lady for not being able to spring her from the place. So I was trying to say, like, mom, you know, we're going to stay here tonight. It's using all the old tricks, the whole bag of tricks. The bridge is out, the weather is rough. We can't drive right now. A flood has happened. We have to stay here until the morning, so we might as well settle in and get ourselves a cup of hot chocolate. Just like, chill out, you know? And I'm getting her in her pajamas. And then she's like, you know, are you staying here? And of course, I'm like, yes, obviously, you know, we're both staying here tonight together. Don't worry. Just go to sleep. And she's like, well, you're not in your pajamas. And I'm like, well, yeah, I haven't put them on yet, but I'll get them. So I went into the closet and all my mom had was another pair of lady's pajamas with little cats all over them flannel cat pajamas. So I didn't know what else to do. So I just changed into the lady's cat pajamas. And then we just walked around in a circle, which would become a very familiar route many years subsequent we spent walking that same circle. But this was new, and I remember all the attendants like looking at me and kind of giggling and saying, you know, like, oh, I love those pajamas. And I'm like, well, you know, we're staying over. So you do what you do and. There was a part of me that hoped, like, great, maybe they they see how far I'm going and how much I care about my mom. Maybe that will rub off and they'll care about her just as much and be this attentive.

SOUNDCLIP

RAEGEN: I did try this is when mom was in the second place. I did try to write a card and I wrote what our mom was like before she was like this because I thought maybe they would have like a little bit more compassion for her and, like, understands. I told them like she was an artist and that she loved designing flowers and felt like I made a big flower arrangement for the place.

GAVIN CRAWFORD: This is my sister Raegen.

SOUNDCLIP

RAEGEN: And I painted a picture and talked about how Mom was like a painter and an artist and how she went to visit her parents, who her mom also had dementia and she went there every day and they wrote the whole story of what she was like, hoping that those people would read that and to see her as more than just like a Alzheimer's like, zombie, basically.

GAVIN CRAWFORD: Yeah.

RAEGEN: But I don't know if it worked. I don't think it did because like, that was (indistinct, talking over each other).

GAVIN CRAWFORD: I'm sure that there's like.

RAEGEN: There must have been like one person that read it and was like, Oh, Donna is such a nice person, but.

GAVIN CRAWFORD: So after 18 months, I have gotten back to Alberta and the disease has progressed quite a bit. She's not very verbal anymore. She can't walk anymore. She's in a wheelchair. She doesn't remember how to really use her legs and she mostly just wheels around in that same circle. But we had taken her home for, I think, Thanksgiving. And then it was time to go back to the home. And so we loaded my mom into the car and took a little drive around town and got back to the place. And I was with my dad, the two of us, and we got to the door. It was cold and blustery and mom was wrapped up in a truck and kind of warm, But it was a pretty chilly October and it was windy. And we open the gate code and then we opened the door code and I thought we were going to go in and sort of settle her in because that's what I was used to from before. And my dad, instead of going in, just hoofed the wheelchair across the place and just hollered, Donna's back in a cheerful voice. And then I just watched my mom kind of roll across the dining room, and then a nurse sort of stopped her and she held her hand and my dad just shut the door and turned around and off we went. And I was like, Dad. You. You just hoofed her back in. You're not even going in? And he just was like, No, it's better. This is better.

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DAVID CARROLL: Yeah I know, well you have to do that, though, because if you try and drag out a long goodbye, you know, you're so you're going to feel good in your life. It's never going to happen and all and and she's not going to feel good either, you know, you just have to do it quick. And then 2 seconds later, she's forgotten, you know, she doesn't remember. The lady picks her up and said, oh, can we go have a sandwich or let's go do this, okay.

GAVIN CRAWFORD: Wow you've gotten really pragmatic about it.

DAVID CARROLL: Well, yeah, I've had a lot of practice.

SCOTT THOMPSON: It's so funny. Not funny, but that you describe your father when he would say, Donna's back, right? Is it Donna? Was it?

GAVIN CRAWFORD: Yeah.

GAVIN CRAWFORD: This is Scott Thompson.

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SCOTT THOMPSON: My father, when he did it on his own, not with us. And at the time, I thought it was terrible the way he did it, but it was very similar to that. He took her there and he just dropped her and kind of ran. I also don't think he could handle the guilt. And I didn't at the time, I was still angry at my father. I hadn't forgiven him for everything. So I just saw him as being a cold bastard. Now I don't. Now I look at it and I go, man, I might have done the same thing because I didn't quite understand how much pain he was in because I was still so angry at him. And I didn't realize. And my oldest brother said this to me once with our parents because he said, It's very hard to think of your parents as a love affair. And that's when I realized this is a love affair. They love each other. They may not say it all the time or show any of it, but absolutely, this is a love affair and we are secondary.

GAVIN CRAWFORD: Yeah.

SCOTT THOMPSON: Even though they had a lot of children, we were not their number one priority. Each other was.

GAVIN CRAWFORD: One of the most recent times. I was back and Kyle was with me. We were on our way out of town to go back to the airport, but we had a couple of hours before we had to drive back to Calgary. So we went to visit my mom and just kind of hanging out and, you know, visiting is you usually go if you go around lunchtime, then she is sitting and she she will eat, so you can kind of feed her. But this wasn't it wasn't lunch time. But I knew she liked Tim Biebs. Got bless Justin Bieber, I guess, for inventing the birthday cake Tim Biebs, because my mom really loved them. So he took a box of Tim Biebs and we were giving my mom Bieb after Bieb. And it was cute in a the saddest way because she was treating us like complete strangers and we would, you know, give her a Timbit and then she would, you know, get it to her mouth and then eat it. And then she would say thank you. And then we'd give her another one and be like, Oh, thank you. And every time it was like the first Timbit she had ever had. And every time it was like, we were a kind sir from the street or something. Just it was very a very polite like, I don't know who you are, but thank you, sir. And then. Just before leaving. Kyle broke the last half of the last Tim Beib and a half. And my mom took it. And then before she put it into her mouth, she just looked up and she said, thank you, Kyle. (sniffing) And sorry. I don't even know why that makes me cry. But it's. It's like that's the thing you hang on to just any sign, any glimpse that they're there. That there's some of them there. And then also the just rank bitterness that she still remembers your husband and not you. Just kidding, no I was happy about that. But it is. It's that you take. You get to the point where you take the tiniest, the tiniest wind, and then you start to think about heredity.

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SHARON COHEN: By the way, my grandmother or both my grandmothers had Alzheimer's and both my parents. So talk about a walking time bomb. I'm with you. But I know that, Sheila.

GAVIN CRAWFORD: This is Dr. Sharon Cohen, a behavioral neurologist and the medical director of Toronto Memory Program.

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SHARON COHEN: Is it inevitable that you and I will get Alzheimer's? No. Are we at risk? Yes. What can we do? Well, a couple of things. It is thought that through lifestyle strategies, we might be able to reduce the incidence of dementia by 30 to 40%. So not 100%, but a lot less. And that's significant. So if we talk about what are those strategies.

GAVIN CRAWFORD: I'm hoping you're going to say lots of red wine and video games.

SHARON COHEN: Sorry. (Laughing) A brain healthy diet, which is not too much animal fat, not too much red meat. Okay. Lots of fruit, vegetables, grains, salad. You like that, right? And fish. And staying mentally active doesn't have to be Sudoku and crosswords. If you love that, that's great. But it can be, you know, going to lectures, can be traveling, can be a game of chess. It can be all kinds of things that particularly have some novelty and some problem solving. Physical exercise to stimulate chemicals in the brain that are important for brain cell growth. And yes, we do grow new brain cells. And with even moderate, you know, intensity walking, if you go for a walk several times a week, you are stimulating these brain chemicals. And sleep don't cheat sleep and stress management, the last one and, you know, stress is ubiquitous. There's traffic stress and relationship stress and financial stress.

GAVIN CRAWFORD: Virtually, it's not a very stressful time in the world right now.

SHARON COHEN: No, no. Yeah we're cool.

GAVIN CRAWFORD: Everyone I talk to on this podcast, I know we all think about it. I talked to Rachel Matlow about it.

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RACHEL MATLOW: Oh, God, I. I really hope they find a cure. By the time we get to that, we get a bit older, you know?

GAVIN CRAWFORD: Yeah. I mean, how how much in your mind? Like.

RACHEL MATLOW: I'm like, this is my future.

GAVIN CRAWFORD: That's what I think, too. And then I make terrible jokes about it where Kyle says something about, like, the future. And I'm like, Well, you don't got to worry about it. I won't know who you are by that anyways. I mean, he gets so angry.

RACHEL MATLOW: (laughing) that's the plan. You're going first.

GAVIN CRAWFORD: I mean, I don't know. I'm so much like my mother. Like, genetically.

RACHEL MATLOW: Right? I think there's something when you identify more with one parent and you see what they go through. Like with my dad I've always identified with, I'm like, well, clearly this is my future.

GAVIN CRAWFORD: That's all. Yeah, that's what I think, too. We're basically just waiting for it to happen. Yeah, I sing a lot of musical theater lyrics to try and, like, keep my brain sharp and also because I'm just super gay. But like, for those two reasons, I'm constantly thinking of musical theater and doing wordle or crosswords or.

RACHEL MATLOW: Well, they say the music is the last to go. And I'm I'm sure that, like, the last thing for to Go will be Ani DiFranco lyrics. For me, that will be the last thing. Like, I haven't really listened to her since, you know, the nineties, but, you know, if somebody brings up an Ani DiFranco song, I still know all the lyrics. I think that'll be the last thing.

GAVIN CRAWFORD: Yeah, that's what I think too. I'm like, You know what I could launch into? I'm not getting married today from company and do like every single word. So as long as I have that, I have something.

RACHEL MATLOW: I can't wait to see us together at the home. Like doing a little like we'll do like Ani DiFranco the Musical or something.

GAVIN CRAWFORD: Yeah. And then we just, like, cross into some fun home. It'll be perfect.

RAEGEN: At least if I do get dementia, like hopefully my kids will shower me and stuff because they all watched me shower mom like so many times. That seemed like, of course you would do that. And that's normal, like for you to, like, suck it up and, like, shower your mom and, like, help her take care of herself when she can't because, like, yeah, no one else was doing that.

JANN ARDEN: I don't envy you, but I do in a way, too. Your mom still here? And it is your mom. It's hard to recognize them, but they're in there and their love for you is so profound. And you've got such a journey to go. I think groups of souls travel together. And I think you've been traveling with your parents and your siblings a long time and you're good friends. And when your mom is okay and you are good, son is such a good son, you're doing so great. Talking about this is so important. Just got to laugh. You got to find the humor.

GAVIN'S MOTHER: Well, we always everything has always had a bed. Her husband. How. But this time. Trying to find the best in the West.

GAVIN CRAWFORD: You're the best from the West.

GAVIN'S MOTHER: I know that that's not true.

GAVIN CRAWFORD: And that is true. You're 100% the best in the west.

GAVIN CRAWFORD: At the beginning of this process, I wasn't even sure why I started making this podcast. But I think now I do a little bit, but I can only explain it in the nerdiest of ways. Whenever you play video games, there's something called a walk through online where if you reach a certain part of the game and it's too hard or you just don't know where to go next, you can go online and somebody who's played the game before you will have written down like what they did, where they went, how they solved this puzzle. And I guess in a kind of a way, what I hope this is, is just kind of like a dementia walk through for people. You know, so if it's happened to them, maybe they'll be like, oh, that's what they did or that's how they got through this part or, oh, that's what's coming next. Yikes. That's what I hope this is for people like I guess a bit of a walk through for the game of dementia, a game that chances are pretty strong. I'll be playing again only from the first person point of view. But I'm not that worried about it. Luckily, I have a sense of humor and a pretty dark sense of humor at that. So that's how I handle it. Just making jokes. I think Kyle honestly is probably more worried than I am.

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KYLE TINGLEY: I guess I just kind of assume he is going to get it. I don't know. I just to prepare myself. He did just forget a person we met. And that's could be anything but.

GAVIN CRAWFORD: Sorry I couldn't find my way back to the studio. I forgot what studio we were in, and it was just standing there for hours. I mean, he laughs. But I should probably dial it back a little.

DAVID CARROLL: How do you feel about recording a teaser for the final episode?

GAVIN CRAWFORD: (laughing) What do I, I can't I don't know.

DAVID CARROLL: It doesn't have to be major. Just a couple of sentences.

GAVIN CRAWFORD: I mean, I don't really know how to lead in to be like, tune in next week for the season finale. Will a major character get killed off? Yes. Next week. Tune in next week for a very special episode of this podcast. Yes, it's the one we've all been waiting for, the death. Breaking.

GAVIN CRAWFORD: This is supposed to be the last episode. Tune in next week for a bonus episode. Tune in next week when my mom finally finds a way out of the maze. I mean. Yeah. You've been listening to Let's Not Be Kidding from CBC Podcasts. The show is written and hosted by me, Gavin Crawford. David Carroll is my producer, story editor and sound designer. Emily Quesnel is our digital coordinating producer. Original Music by William Lamoreaux. Our senior producer is Daemon Fairless. Executive producers are Cecil Fernandez and Chris Oke. Tanya Springer is the senior manager of CBC podcast and Arif Noorani is the director.

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Transcript of Let's Not Be Kidding, Episode 6

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