Matisse Chik 0:02 This is we met you when a podcast by journalism students at Toronto metropolitan university. We go back in time, dig up new stories from 2013. and track down the people in those stories. So Allison 0:17 that sound has always stuck with me. And it's one of those things that I'll continue to carry carry with me not to get too too dark and deep. But it's one of those things that I still can hear. Even 10 years later, Matisse Chik 0:28 we want to know what happened after their names were the news. Coco Ma 0:32 I sat down at the piano, and I remember trying to play. And then after like, two minutes, I just like broke down into tears, because I felt like I had lost so much of my I abilities, my technique, my, you know, everything I had worked for Speaker 1 0:53 a while we have managed to fill in some of the gaps. But there are still many mysteries. And we're so pleased that the Allison project has lasted all these 10 years. Speaker 2 1:10 That yeah, and I really started my career in doing social work with people living with dementia. Matisse Chik 1:18 Some were teens when they were interviewed. Others were adults. No one was in a position of power. But many of them felt the power a new story couldn't have done I'd say unfortunately, probably for the first couple of interviews after that I gave I think I was higher in anxiety, just kind of anticipating like, oh, no, what are they going to say? Like it, you know, kind of maybe a little bit, maybe a little bit distrustful? I connected with it on somewhat of a personal level. And then, but I never thought that it would actually, like get to this stage where it is now. And I've seen that like evolution is really crazy. Yes, that's my voice. As we've been exploring the difference a decade makes and the difference we journalists can make going forward. By going back to 2013 Micro planning landed on a story that surprisingly brought me closer to my family in Europe. I'm Mitzi chic, you're listening to we met you when season two, this is memories of mammals. Matisse Chik 2:31 My family would visit this apartment in Paris occasionally. They usually didn't want the kids to go into the room. Sometimes I'd play this game with myself to see if I could get to the room down that long, dark corridor. Throughout the entire corridor, on the left, there was a continuous mirror. So you're kind of just walking whilst you're staring at yourself. And that used to scare me, just the entire corridor leading up to this room. And the door would always be slightly ajar. It would never fully be opened. And coming out of that room. That tiny little space you would see like this bright lights. I remember it's so well. So my brother and I would spend our time playing in my grandfather's office. He had a bunch of these statues and these boats and things that we play with and look at. I just I remember hearing sounds out of her door because she would sometimes yell and have the sounds that you would hear from afar. And I was maybe four or five at the time. So as a child, I knew that these were not normal sounds. So I was somewhat scared. I never really wanted to go into the room Matisse Chik 4:07 but the woman inside that room wasn't scary to everyone. Actually, most of my family would say she was full of love Speaker 3 4:15 when she was coming and pick me up at school, and she would always come with an afternoon snack. So a little piece of baguette with a piece of chocolate inside. And we would walk together back home. So taking the metro together and then getting back home. It was a 30 minutes commute every day. I was having all my lunches at her place when I was in secondary school between the age of 10 and till the age of 14 years old. So every single lunch, I was walking from school to her place, then walking back and I would have lunch with her and she would always make every single effort to have a wonderful lunch for me to be rich. fields for school. Matisse Chik 5:00 This is my mom. She's talking about her grandmother, my great grandmother, mummy, Speaker 3 5:08 I have tons of memories with many with your great grandmother. There is not one single day and nights where I sleep. And I don't think of her she was very, very important in my life. Matisse Chik 5:20 I was four or five years old when mommy started changing the beginning, Speaker 3 5:23 she would obviously recognize us. But I think very quickly, she would not recognize me anymore. So she would smile, but a little bit like automatic, you know, as automated modes, she would not really be able to Matisse Chik 5:40 speak. My mom is trying to help me understand who exactly was behind that door. I remember from my childhood. I always knew it was mommy. But I didn't know mommy. What I did know, was the fear I felt as a child and the sense of loss we felt as a family. For weeks now I've been on this journey trying to figure out who was my great grandmother. It all started off with this podcast assignment. My professor asked us to find a news story from 10 years ago, and explore what has happened to a person in that story since the original news coverage. And of course, me being me. I had left this to the last minute and was rushing to finish this assignment. After hours of researching countless articles, I finally came across a story from 2013 that caught my eye. It was about our therapy helping people with Alzheimer's. It got me thinking back to my family's experience with a form of Alzheimer's. I thought, wow, this is it. This is my story. Right away I contacted the art therapists quoted in the story Kiersten camera team via LinkedIn. I never expected that diving into that story. And learning about her work would lead me closer to my own family. Speaker 2 7:15 My name is Kirsten camera teen. And I'm a social worker, and art therapist and I currently work at the Alzheimer's Society gray Bruce 10 Matisse Chik 7:27 years ago KEARSON was working in child welfare, while also pursuing a project using art therapy to treat patients with dementia. She introduced them to painting and drawing, sculpting and collage making different forms of expression for people who struggle to express themselves using words. The project was called fostering personhood through creative expression. KEARSON got the opportunity to present it at the Alzheimer's disease international conference in Puerto Rico that year. And it was well received, there Speaker 2 8:05 was that recognition that hey, we need to start to do something for people living with dementia. And they need activities like everyone else. Matisse Chik 8:13 Now KEARSON works full time with Alzheimer's patients, Speaker 2 8:17 I continue to do our therapy. And we have a program through the Alzheimer's Society gray Bruce called active living. And that's a social recreation program for people to engage in meaningful activities. Every eight weeks, I provide a session as a part of my work. So I use this special method called time slips, which was developed by a woman named Anne Basting. And it's where you have like a funny staged photograph. And you use that and I still use it to this day, in my art therapy sessions. You use that as the way to start to engage people. What do you want to say about this picture? What's happening in this picture? There's no right or wrong answers. So it allows this opening up this gateway where people can just have fun and open up. There's no wrong answers. So it takes the pressure off of you know, having the right word. And so that was my my thought process. I wanted to show that people living with this disease can participate in community. And it's super important that we treat people with dignity. And this was a way to showcase that, hey, I'm still here. And these are the parts that are here. Matisse Chik 9:38 So my family could have reached out to these parts in Miami. These parts that were still there, just waiting to be addressed. Speaker 2 9:48 Using art is a way to tap into parts of us that we can't access otherwise. We don't store trauma in a verbal part of the brain, we store it in a very nonverbal part of the brain. And sometimes the only way to access parts of yourself and parts of your experience in order to heal is through a visual way, a tactile way. I think I just was amazed at all the different uses of of art therapy with different populations. So it's it's very flexible and adaptable. Kiersten Matisse Chik 10:27 This project involves also having the art displayed in a gallery. That was a special moment for the people with dementia who created the art and for the families to the right. Yeah. Yeah. Kristen, thank you so much for your time. It's been a wonderful interview. And by the end of my interview, I couldn't stop thinking about how her work might have affected my family. Had we known about it in time, I told Kiersten a bit about my family member who died when I was very young. I would have loved for you know, maybe for her to have tried this. Speaker 2 11:02 Yeah, absolutely. What was her name? Matisse. Matisse Chik 11:07 Well, we called her mummy. Matisse Chik 11:15 I found myself reminiscing about the memories of my great grandmother, many someone who might have vivid recollections of but I never really got to know. I kept wondering, What if memory could have benefited from art therapy? Would anything have been different than this research started as just an assignment. But now it's become my mission to discover more about my great grandmother. When we lost her, I was too young to fully grasp her experience and who she was. So I reached out to her son, my granddad, he dedicated his life to caring for mommy when she was ill. He's also the doctor in our family. He's 85 and lives in Paris. I'm an exchange student away at school in Toronto. So I talked him through the setup for our recording over zoom, Shannon plan to find the COVID YouTube channel with Buffy the vata Cervia. Now something has always puzzled me. I can never obtain an explicit answer from my mum about memories clinical diagnosis, mom always told me Mommy had a form of Alzheimer's, but I never knew what she meant by this. So I asked my granddad Speaker 1 12:37 Dana's teak dilemonade Yeah, because it has you Yeah, but the maca Pacey de la melody, kill us ma yo does not a first terminal. Ill appel do a capacity the valley in Speaker 4 12:56 the diagnosis of Alzheimer's disease. There is no precise marker of the disease. In the final phase of mother's case, she lost the ability to swallow and therefore had difficulties feeding herself. This is not very common in Alzheimer's disease. So at this age, it's possible for people to have Alzheimer's disease that's aggravated by vascular disorders. So a precise diagnosis was extremely difficult. Okay, I Unknown Speaker 13:29 think there's a place to take some money if you see my Matisse Chik 13:31 granddad explaining that that first memory was able to walk and run errands like groceries or Speaker 1 13:38 to the villa malady. Mama Attica Barbara, de ma che de la or Menapii. A dash to the premier senior the Samara de I did the spell for ya que la pursue of near immediate Ma, given up, Speaker 4 13:58 the first sign of her illness was to get lost. She didn't know how to return immediately from the supermarket. She can no longer recognize me. She confused me with my father, and she called me girl Speaker 1 14:13 in my player. Girl. Matisse Chik 14:16 I remember my mom telling me this when I spoke to her, many would slowly forget who we were. She confused her son with her husband galvao. This was something that I never noticed myself. But as I grew older, my family would explain to me my granddad told me that at noon, he would go have lunch in mommy's room, the room at the end of the corridor. And so he sat at the table. He tried to talk to her but at that moment he said there was practically no communication. Yet he still tells me that he would talk with her and kiss her. I asked him what kind of things would you tell on me, how would she react in a coal mine? She doesn't react. I was confused. Now, Pascal. Speaker 1 15:11 Next time look incompetent member, suka TBD? No, Speaker 4 15:16 because at the peak of her illness, she doesn't even understand what you were saying to her. He said Matisse Chik 15:21 she was very passive, never aggressive, except sometimes if you touched her, or if you try to move the sheets that were covering her, that would immediately be a movement of defense. That might explain the screams I heard from her when I was little, it was that just her trying to say something. Speaker 3 15:47 Then her expression or more sounds, or little shouts, there is a part of your brain, which is controlling your emotions and this ability to filter your emotion filter, your anxiety or your anger or is disappearing. So she could start you know, you know, biting or doing things which are very weird, because she was losing her cells. That's where enabling her to control her behaviors. Matisse Chik 16:21 That's my mom's perspective. And it makes sense to me. Although what's interesting is how both my mum and granddad seem to recall interacting with mommy, despite saying that practically was no communication. Speaker 3 16:39 Like she could listen and she would respond, even if it was not completely adequate. I would stand next to her bed, I would hold her hands, we would sort of discuss she she had an AIDS, a nurse. So we will discuss the three of us. But I think what was becoming more difficult was when the dialogue was stopped, because she was not in capacity of responding then it was just looking at her, you know, hoping that she was not in pain, trying to think what she had in her mind. So I was probably talking and telling her what happened and talking about you guys what you are doing, not expecting any answers, but try to be part of her world in a way and for whatever she was getting from what I was saying hoping that she could still be a little bit part of our worlds. And then that was you know, when we she was still at your granddad place. But there was a time where this was no longer possible. Do Unknown Speaker 17:42 lip pad Well, Speaker 4 17:45 in the house where she was, we had chosen as a precaution, a room with two beds. So she was not alone in the room. She had a roommate, who was fully conscious, who didn't have the same illness. Matisse Chik 18:00 And melody, he told me she wasn't really aware of her roommate. May that was in Speaker 1 18:07 Photoshop past Rama and the developers Anthony. You're probably the problem is you left me i passe. Speaker 4 18:15 Every time I went to see mother, the roommate would tell me she had a good night. There was no problem, sir. The nurse came by or the person who gives her food came by. So I would knock on the door of the room for the roommate, not for mother. She would never notice. I even made an attempt to put some Armenian music on my phone and pass the music to her ear. Speaker 4 18:47 She probably heard it. But she never reacted. Matisse Chik 18:52 KEARSON says, through arts it's possible to regain a sense of control, as it allows us to tap into parts of us that we can't access otherwise. I want to know, I need to know wouldn't many have benefited from using art therapy as a form of healing to Unknown Speaker 19:11 as you pass through the completion of heavy shows. Speaker 4 19:14 I'm not convinced that you can stimulate these things at such a late stage of the disease. Essentially Matisse Chik 19:19 what my granddad was telling me is that the effectiveness of using our therapy as a treatment is somewhat dependent on what stage of Alzheimer's we're talking about. Ms. Disease appeared when she was about 88 years old. Pearson's project only involve patients in the early to mid stages of dementia. Speaker 1 19:41 Through some football, sia Mamaw and a mellow music and datavideo Hit Melena diagnosi. Speaker 4 19:49 See, it makes me think, Mum, love to dance. She loved music, she loved rhythm. She loved to dance. The fact fact that she didn't react at all when music was played. I don't see how her memory could have been refreshed. But it's possible. I asked Matisse Chik 20:09 my granddad almost reluctantly, if there was anything that he wished he could have done differently when it came to providing the best care for many. Speaker 1 20:20 My shoe lover Yadi Aussie longtime person, Taka Sir, Speaker 4 20:27 I'm happy that I kept her living at home for as long as possible. She had the affection of her entourage, the details of her living space. It didn't mean anything for her. But I kept her at home. She had her bed, and so I don't think so. There was no other way. You have a pardon Unknown Speaker 20:48 me podoco Yeah, she I Matisse Chik 20:51 do believe this answer is genuine. My granddad did everything he could to take the best care of his mother. And he says he recognizes the importance today of trying out all kinds of therapies to spark some form of creative expression. I then asked him what memory of his mother will stay with him for the rest of his life could short shell Hot Rod many Russo wants to kiss kiss her Speaker 1 21:25 and they could pull like it is easy to use with IV or Amazon the zone. He does with Mathematica Medipak Popova basically FAQ. about disability. If Speaker 4 21:43 I was to characterize her, I will say the day I came home from school saying I got 18 out of 20 on a math test, and she said, Why not 20. But it was all out of affection. It wasn't severity. This Matisse Chik 22:00 was extremely hard to hear, especially sitting 7000 kilometers away. I just wanted to put my arm around him and just comfort him with a nice warm hug. After joining me on this journey, and listening to all of this, my co producers far and Daisy wanted to know what memories I would use to characterize me. Well, it's not a direct memory, at least for me. But you know, kind of what I've said about the one picture I've seen of her when she's on her two feet, we're outside and and she's pushing me in my stroller. I've heard that story over and over again from my parents from my grandparents. This journey started off with my interest in Kristen's work, but through adventuring to the past, talking to my mom, to my grandfather. I learned more about who my great grandmother was. She wasn't just a woman with dementia. She had a whole life outside that room that was filled with personality, love, and many memories. Goes to show that Yeah, her life was not her. She is remembered not from you know, being in that room the entire time. She led a whole life before that. Yeah, she's just a truly remarkable woman and this powerful figure in our lives, and not everyone gets to get the happiest of ending sometimes and it's just like, you know, it's it's not exactly a fairytale ending and, and that's okay, because there's, there's a whole story behind it. There's a whole other narrative behind her life. That should be emphasized because that's the majority of that. That time period is defines her defines who she was not the not the unfortunate ending. I learned many things about my great grandmother when producing the story. But I also think this experience changed my outlook on life. It made me more mature, more accepting, and know that not everyone is fortunate. But our endings are not the sum of who we are. There are always more routes to us that should be acknowledged. We met you when is a production by journalism students from the creative school at Toronto Metropolitan University. This episode was produced by Daisy kin, far as Zula and Mia Matisse she mixing and Sound Design by Mia Johnson. Sherry OKK is our executive producer and Professor Angela Glover is our Director of audio production. Our season two graphic was created by mama Husseini web design by Daniela. Oh, Laurie you special thanks to Drew Laker lentigo, founder of L WC studios for supports during our pitching process. And thank you to the creative School for the curriculum innovation grants that made you Lakers participation possible. Thanks also to Professor Bill Reynolds for voicing translation of my granddad. I'm Mitzi chic. Thanks for listening Transcribed by https://otter.ai