.jpg)
Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Part 2: Meaningful Engagement in Dementia Care with Maurie Voisey-Barlin
In Part 2 of our conversation with Maurie Voisey-Barlin, we're reminded that every person has a story needing to be heard, especially those with dementia. On this episode, we discuss Maurie's person-centred approach, celebrating the power of connection and the art of relationship-centred care.
This conversation unveils the layers of nuanced interaction essential to reach someone's core, even when memories fade. Maurie shares about mischief, finding joy in the playful and the routine, as well as how his 'satellite' technique demonstrates that circling around can lead to a heartfelt connection. Each story shared is a lesson in patience, respect, and the personal touch that turns caregiving into an art form.
Maurie's tales illustrate the profound impact of tailored communication and genuine understanding. This episode is not just a discussion; it's an invitation to witness the transformation that occurs when we truly engage with the hearts and minds of people living with dementia.
Maurie's Bio and LinkedIn
Eden Alternative & Dr. Bill Thomas
Dr. Al Power - Seven Domains of Well-Being
Jane Verity
Dan Cohen - Music & Memory
Judy Cornish
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Redefining Dementia. I'm Ashley King and I'm Daphne Noonan. Thank you for joining us. We are your co-hosts as well as the co-founders of Person Centered Universe, where we help you provide person-centered dementia care at home, at work or in your community. Through the Redefining Dementia podcast, we are striving toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 2:When consuming resources or media about dementia, the focus is often on the challenges, stigma and fear that may accompany a diagnosis of dementia. This podcast seeks to shift that narrative to focus on and celebrate living well with dementia and what that means for caregivers. Through the sharing of stories, resources and helpful life experiences. We hope to provide you with helpful and meaningful takeaways for your journey ahead.
Speaker 1:A special note before we begin. This information shared in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:Welcome to part two of our conversation with Maury Voisey-Barlin. We look forward to sharing more of our wonderful discussion with Maury, as he shares personal stories and insights from his rich experience of providing meaningful engagement for persons living with dementia. Thank you so much for listening and we hope you enjoy this episode as much as we have.
Speaker 4:If we're going to do this person-centered or relationship-centered, as I like to talk about the way I work if we're going to do this, we need to really live it and we know that if those around us that are working don't believe it, then they won't walk it.
Speaker 4:So, we really need to bring people on, and I think that's where aged care as an industry, as a sector here I don't know about your part of the world, but it needs to do better. You know it's a very cold, rigid system. It's fairly thankless. It's a ticking clock and people the demands, and years ago they took two people's jobs and made them into one. It was a great idea to save money and they did it again about 15 years ago and now we're doing the job of four people.
Speaker 4:And so you know, we've got this absurd situation where people that are looking after our elders in what I think Bill Thomas calls it the citadel of protection. We've got these people that we're torturing, that are meant to be looking at. They've been drained of all their love and their energy and there's a real yeah and there's a moral injury to members of staff that aren't able to look and connect to them. And so you know, you look and connect with someone for fear that they might engage, and then they they may say hurry up, murray, I need you for the two person lift down here, let's go. Sorry, I'm I'm digressing a bit, but I I do really believe very strongly in creatives, whether you're just whether you're a performer walking into perform or whether you're creative there to engage and do that, you have to think of it as a community and interact with everyone.
Speaker 2:Yeah, okay, so I have a, so I'm going to ask a practical question. So it's probably going to be.
Speaker 4:I'll have another drink.
Speaker 2:I guess whatever path you want to take us down, but I guess so I kind of have two practical questions in mind. But one is I guess so we've been so much like kind of jumped right in. I feel like I've known you forever and we've just met 45 minutes ago. But I guess when we, when you think about someone who here's about your work, I would say it's another, like a volunteer or somebody who's just like in the situation you were in, just kind of looking for their next path and like maybe has you know a bit of a desire to kind of explore working in long term care and one way or another Exactly Do you do as a you know, framework that you work within and I think you kind of shared with us a little bit before the call about the kind of different pillars of like what you sort of structure your work around in terms of the approach.
Speaker 2:and then also part two to that question might be how would a person is there anywhere they could go to like learn how to own that craft, or do they just have to kind of make it up and, like you did and you know, forge your way, your your own way with it?
Speaker 4:Yeah, that's why that's there's a lot of stuff there isn't there. So just to answer the last part first, maybe I was gifted an opportunity to learn this craft, this work, be exposed to this work and presented a leadership role where I was able to go and experiment and play with you know what we were working with, and then I felt that I knew how it could be. I felt I knew how it could be better. I really did. I felt that it there was, there was a misguidance towards slapstick and the clown hangover and I thought it was more relational and I thought we needed to be more closely aligned with the clinical team. So as I started to think about that and I became an independent, I was able to develop that I think that actors particularly I mean I've seen musicians do this work and performers, but I think actors, and particularly street performance, who've worked in the street, you know, in an interactive sense, improvisation I think that there's a real scope there for people to learn the work.
Speaker 4:I'm at a I'm at a bit of a crossroads now because I'm 61 and I can't do this forever, and I've mentored. I've tried to mentor four people, two of which are continuing. I'm mentoring a young, 17 year old person who's a music person and goes to a school for people that don't fit into the school system and she's come such a long way. But I also mentored an old theater buddy of mine down in Woollongong, which is the city about three hours south here. So she's doing the work and she's now working in in aged care as a creative engagement specialist.
Speaker 4:The other two that were here in my hometown. They didn't work out because they have real desires to be actors, you know so. So it's very difficult because they they love the work but they really wanted to focus on acting. So it's a real dilemma how to get people into this kind of work. But there's nowhere really to go. But if anyone's out there wants to know, I'm happy to help and share stuff. There's a, there's public, there's a guy. What's his name? Evan? What is your name? Evan is doing some work south of you in America somewhere. I think of his name or maybe we can post it and people can contact him.
Speaker 4:I know that he's not performative skills, but I mean I'm happy to share what I do. I don't I don't hold IP, it's not my thing and it's probably to my detriment. I think that people can do this work and you just begin. I think you need to be educated around dementia. I think you need to understand and start to begin to look at dementia and I think a good place to start, apart from these online courses here, the University of Tasmania does a brilliant online course which is about the mechanics of dementia, but looking at the alternative and I'm a big fan of Alan Power, dr Alan Power and Bill Thomas and Jane Verity her work as well and looking at their frameworks and reading the book Dementia Beyond Drugs is a great start and I think starting to understand that and then I think really you learn on the job.
Speaker 4:I mean, I'm reluctant to say that because you need training, but I don't know how from the other side of the world, I would do that for people, but there's always the opportunity to. I'd like to see get a group of people together that are interested in it and then have a presentation or a forum and talk about ways of doing it. Sorry, does that answer the?
Speaker 2:question or does that talk around it? It does no, so it absolutely does. And it does seem like it's the kind of thing where you're pioneering it right. So I ask that question for that reason, because I know there's going to be so many, probably so many of our listeners are going to be curious as to how did that happen? But then the other the question was about structure, I will help.
Speaker 4:I will help. If the people want to do it, I will help, and it may be that I need to do something and then charge if there's ongoing ladder support, but initially I would be happy to help. I would love to see look, that's self-motivating, because if people, more people, do this, it makes me stronger. Do you know what I mean? Like it's in my interest to see this work.
Speaker 2:So if I think purely selfishly.
Speaker 4:It's in my interest to see this work live.
Speaker 2:And so forgive me for being presumptuous, but I've already decided that we are going to talk Like we're going to do something together, right, I love your presumptions yeah. So let's just put that out there right now. But no, so you sent us a little note and you talked about the different steps, like where you're harvesting history, so those elements of the work.
Speaker 2:It really is a process right Like, even though yeah much of it is learning on the job and like kind of. We always use the analogy like build the plane while you're flying it. So you know like.
Speaker 4:Oh, that's great.
Speaker 2:Yeah, but you know you do like there is sort of a method to the madness, like from what you've shared with us about the way that you approach it, there is.
Speaker 4:Yeah, there is. Look. You have to be you use the word master you have to be masterful with your talents. You know you have to really think and that's what an actor does. An actor is strategically building, you know. This is why I think actors. You know you're true actor that's interested in the craft as opposed to fame. And if you want to be famous, that's okay too. But you know, the craft of acting is a very disciplined form and I hadn't realized that until I began this work, to be honest with you.
Speaker 4:So my engagement framework I've set up. I've gone back and looked at what I do and I used to use the alternatives domains of wellbeing. That's an issue and I still refer to that because I think that's absolutely brilliant. And Jane Verity I like Jane Verity's. What is it? The emotional unmet needs. There's one that I particularly like of hers we need to give love and receive love, and I like that because we think of elders, we think about giving them love, we don't think about them giving us love, and that is a reciprocal thing you know Like otherwise they become a consumer. It's a two-way transaction. Anyway, to go back to my framework, so I just got, I developed this idea of what is it I try to do and have this engagement framework which I'm happy to share and you know I'm sharing now.
Speaker 4:So I talk about harvesting history. So obviously I've got a story which I will share with you about harvesting history because I think it's a good one, and I'll use that in a minute. But so harvesting history is going back and looking for clues. It's really looking at a person's history, and I'll give you the story of Reggie Tubb in a minute. We'll come back to harvesting history but you need to know about this person, as we've talked about Dorothy and the wedding dresses and the seamstress and then where that goes and she wears my ring. Then when I get some history and some knowledge around a person it may be very little, even if I just know where they're from I can start something Knowing someone's favorite color or their favorite song or whether they're a widow or a kid's. It's not always everything, but sometimes it can work. But you need to really know something and sometimes you discover it. So what I then want to establish is their preferred interaction style.
Speaker 4:So you know, I have a thing that's called mutual mischief with Barry. I mentioned Barry earlier. He loves to be naughty and mischievous. He would not thrive in an environment if he can't do that. So I create opportunities for him to be mischief and I'll come in and he'll go oh you're mad, what is your wife put up with it? I'll say I don't know, let's ask her, we email her and she'd email back, and so I would create those opportunities for mischief. I want to create a situation where, when I walk into the space, the elders go, uh-oh, here he comes. It's like the naughty nephews arrived.
Speaker 4:But then for some it's not about that. For some it's about validation and sitting with them and just being with them. It's not about mischief or cheekiness at all. And then for others it's about whatever the interest. I have a woman who loves a particular team called Paramatta. It's a rugby league, we play rugby league here, and so she has a very strong link to a few of the players and gradually there are pictures of the different players, the legendary players, going up on a wall that I bring in for her. And so it's about her interest in this team that she really loves, and so I'm trying to find out. You know, what is their style of interaction? They like to be cheeky, they like respect, do they like to hammer me and put me down, or do they like it when I go on the attack? And so I'm trying to establish how I'm going to interact with them. And then I'm going to look at now, what does this person need? Does this person need novel or routine interventions? So novel, well, let's talk about routine.
Speaker 4:So Davo, my friend Davo, once said to me I can't remember things I don't know. I'd say who's, I wonder. I never say remember, I wonder who this guy is in this picture. I don't know, I don't know, I can't remember anything. He panicked so I thought OK, so one day I was sitting see if you can remember this and I ran out of the room and I came back in with a fly swatter and I gave it to him and then I went, oh.
Speaker 4:Then I ran back out, I came back in, I had a fly swatter. Then I went, oh, hang on. Then I ran back out and I came with a balloon, I blew it up and then we started to smash it. And I did the same thing every week. Davo, see if you can remember this. I ran out, I got the fly. The very same thing. Every single week, I did the same thing, and then I started to build on it where I would get his walk and I'd move it back and I'd give him three balls, juggling balls in the basket, and I'd hold the basket open of his walker and he try and throw it in.
Speaker 2:Oh, that's amazing, I did the same thing.
Speaker 4:I built on that and one day I went past and I think he got help, but it didn't matter. He was there and I used to go and give him a five-minute one. I go get a day, I'll be there soon. As I went past he held up the fly. So he says I'm ready. Oh, that's amazing. Yeah, now you can look at all the dementia books you want to do and it'll tell you that he could not form a new memory. How he formed that new memory, no one will ever know, but he did Anyway. So that's routine.
Speaker 4:So for David that was really important, whereas with my friend Barry everything needs to be novel. I need to provide things that are unexpected for him. So I'm deciding, like does this need to be novel or routine, or does it start with routine and then branch out to novel? I might use music, right, I might use for Barry. I would often particularly now as he's declined sets in. I use Sweet Caroline, neil sorry, neil, I hope you don't mind, sweet Caroline, he loves belting that out. So I'll often start with that now so that we can begin a session, or I bring that in halfway through. So that's where the novel or the routine comes in. I'm deciding on what intervention is going to be, and then there's a thing I called indirect and direct. So Barry's very direct, dorothy's very direct, I'm in there, it's direct. There's no pussy footing around.
Speaker 4:But I had one guy called Jimmy who reached forward with his head, stuck it in my face and said F off. And I went, oh okay, and just as I was processing that and going right, suck it up back off, apologize. He did it again. He said I said F off. And I pulled right away. I'm sorry, man. He said, yes, get away from me. And I was like I'm very sorry. I said, oh, we're really sorry about that. Yeah, we'll take him off the list. I said no, no, no, you can't take him off the list. I have to break through, I have to find a way. He needs me. And they said but how are you going to do that? So I don't know, let me think about it. But I have to offer him choice. And they're going yeah, well, good luck with that. So this is the important thing is like you've got to find a way to break through this kind of person that's rejecting all offers while still maintaining and giving choice.
Speaker 4:I came up with this idea of which I call satellite. So every time I said who's that guy over there? And I said that's Stan. I said the stand always sit next to Jimmy there. They said every day Stan goes there and Jimmy sits there. I said can you ensure that that's always the way they're seated Every time I come in? Sure we can do that. Can you take notes? I want you to know. Every time Jimmy looks forward, sits forward, smiles, grimaces, whatever he does. And so I would go up to and I read, I harvested my history and I remembered that Jimmy said and I'm looking for parenthesis when people put rabbities I call it and they say I like to.
Speaker 4:I like the song my boomerang won't come back, because it reminds me of sitting around the fire and drinking tinny's with my mates, tinny's being tins of beer. So that was so. That meant that he'd said that right. So I knew the song my boomerang won't come back. It's kind of like a bit awkward and a bit racist. But anyway, there was a one of those fun songs. So I learned all the fun songs of that era, you know Timey, kangaroo, downsport and Myle Manza, dussman, all these novel songs.
Speaker 4:And Jimmy loved a dirty joke. So I had a string of dirty jokes. I looked up. Dirty jokes aren't my forts, they weren't my forte.
Speaker 4:And every day I go up to stand, I go hey Stan, hey Stan, I've got a song for you and I play him one of the novelty songs. And my lifestyle buddy would be writing down Jimmy's responses. And I would totally ignore Jimmy. He was sitting over there. I would look at him and I talked to Stan. They go, hey Stan, you want it? I've got a joke for you. It's a bit dirty, you okay with that? Yeah, yeah, yeah, I tell him a dirty joke.
Speaker 4:And I did it for eight weeks. I ignored Jimmy. I went up to stand, I sang the songs different ones told him a dirty joke and then my lifestyle partner saying he's really looking forward. He was leaning forward, he was laughing, smiling. I went yep, yep, okay, good.
Speaker 4:So gradually he was coming in and so I'm satelliteing around him, I'm going around him and finally I had this one joke which I will never tell anybody. It's disgusting joke, but it's a cracker, if you'd like that kind of thing, and it's from my brother. My brother knows some really terrible, awful jokes and I will never repeat this joke. You'll never get out of me. But I sang a song and I said to Stan hey, I got a, I've got a joke for you. It's pretty rough. I'm telling him the joke. And I could feel Jimmy leaning forward. I could see it, I could, I could sense it. And just as I got to the punchline I turned to Jimmy and I delivered it right down the barrel of his eyes and well, he just cracked up. He looked at me, looked at Stan, we looked at each other, we laughed and then I burst into the. My boomerang won't come back, my boomerang won't come back. And I started to sing the song to him and we become great mates.
Speaker 4:After that. You know, almost every week there was a couple He'd say not up to it, but I would. I'd be able to get really close to him. I got pictures of an old Ford and 1964 Ford Falcon I think he had, which I got for him for his wall, and I got a photo of him. We're looking through a. I took him in a dog recipe book, like an actual recipes for dogs, which he found really offensive. He was really angry about it and we were bagging that out.
Speaker 4:So that's the satellite when you work around, somebody intentionally draw them in doing everything they like, but with somebody else that also approves of it. So there's two beneficiaries there, yeah, and then there's no, the final one. So that's what I call satellite. So that's indirect, that's an indirect way of working and that's probably the best, the most profound example I have of that. And then I look at what I call delicious invitation.
Speaker 4:So when someone, someone is sitting in grief and loneliness, so this protective shield up and it's the way they perceive the world that is perceiving they become cynical and they, they, they doubt people. And at this Vivek Murthy, the surgeon general under Obama, wrote a beautiful book. He has got a book about loneliness and he says that when, when we are at our must, lonely is the moment when we push people away, when we need them the most. That's what we do. And I got to thinking about that and my thing is getting into the room where others can't. That's that's what I pride myself on being able to do. So to do that, my view is is that if you're going to get into a room, people, if you go into someone, say would you like to see the funny guy? Do you want to see Mori? Would you like to come and join us today. I've got a song for you. No, I don't, I don't want that.
Speaker 4:People learn you know how to self isolate their their skills become quite as well established and complex and and and so you can't get in the room. So if you're going to get in there, you've got to make the invitation so compelling, you got to make it so interesting that you cannot resist it. It has to be kind of delicious. I call it now. I mean, you know the term delicious is probably extreme, but I use, I like the term. So you know I will have these pictures and I've got pictures of my baby grandson who's like rolls of fat, looks like the Michelin man, and he's got this hat on the beautiful photograph of my, my grandson, which I used on on Harold once, and and so it feels intrusive.
Speaker 4:When you go into someone's room, that self isolating, and they are the rejecting, oh, you feel like you're going to intrude, but somehow we've got to break through there while still offering choice. So I will use, you know, I will use the picture. Let me just quickly Hold it. Hold that thought. And oh, here we go, I use this.
Speaker 4:So I walk in and I'll knock and I go, hey, so this is a good one, rod. Hey, rod, you were talking about the fashions in your day, are you sure? That's a kind of a cool fashion, and so you know they're kind of looking at you like, oh, what are you, what is it? And then they look at it and if you get close enough, they'll look at it. And then what you're hoping for is you go, is this, is this really what you wore when you were young? And then what you're looking for is them to take the photo and look at it and before you know it, you're there and you can see they're interested.
Speaker 4:They picked it up, they've got it and you've got to get that right, which is why you've got to harvest the history You've really got to understand. Now you might be skirting around and trying to figure out what the preferred interaction style is. That takes time. Did you see that? Like you know, you've just got to. You've got and really simple images. You know one, two people. Oh, here's me and my wife at our wedding.
Speaker 2:It's two monkeys. We need to tell the listeners that Two monkeys in wedding in a wedding suit and bride in the lovely bridal gown.
Speaker 4:So so you're looking at trying to entice people into engagement with something that compels them to come into it and then start the process there and start to okay, right, I see where the buttons are how long to spend in here. So that's the kind of process for that. Do you want to? I'll talk about Reggie Tubb in a minute. I'll come back to that, but is there anything that? Because I've talked a lot, I've been very conscious that I'm talking a lot here.
Speaker 5:Okay, love it, you know. I just one thought that I did have is do you adapt these approaches based on where someone is at on their dementia journey? Like, how do you adapt that?
Speaker 4:Yeah, Well, that's such a great question actually.
Speaker 2:So earlier, right, If they were earlier earlier stage, like say, maybe still living at home or something like that, would there be yeah.
Speaker 4:That would be. You know, if we look at someone that is maybe bedbound let's say they're bedbound and their word finding is very limited, they don't use phrases then I'm going to probably take a stab, maybe, at some music of their generation, of their era, and try and think what era might that be? There's a beautiful, do you know? The work of Dan Cohen for the Hiddiwit Music.
Speaker 2:Amendment.
Speaker 4:Yeah.
Speaker 4:Yeah, I know, yeah, I love Dan Dealey and I got to meet him when he came here to Australia and we talked and Dan's now still advocating for music. But his music and memory, the legacy of that was wonderful because he talks about the golden years, you know, between 16 and 25, not for everybody, but generally. That's where the juicy stuff is. For individualized music Now I've got limited. I'm not a musician but I play the ukulele but and so you know I've got, I've got quite a big repertoire now but I've got limits of what I can play. But you know, I'm trying.
Speaker 4:I discovered with one woman called Denise that she liked the song Raindrops Keep Falling on my Head and it was only through experimenting with her. So she couldn't communicate verbally at all. She used, well, she used sounds, but it was mostly my lifestyle. Buddy would hold a hand and hand squeezes would be it, and sometimes she would nod. But she I could tell when she just looked right down the barrel of my eyes and you can feel that connected eye contact when it's really genuinely connected. And so I would use music more often with people further down their journey of dementia. But then I would branch to my grandson photo and see if visual photos work. So I've got a woman called Laurel I see often and I've been seeing for a number of years, who used to play the piano accordion and music is really in her body and she really is activated. Now she's quite. She's not very communicative so much now. It's mostly just a look and raised eyebrows and sometimes there's a comic or look on her face. When she is something amuses her. But I use a lot of photos of my grandchildren with her and she will look at them and she'll raise her eyes and I think that kids and animals are quite powerful if you get the animal right. You know dogs, cats some people hate cats and I think for Laurel because she wrote a book about the native species of flowers in her area. You know, I know that. I know that Gavillia is a native flower here in Australia. I know that she's very interested in a lot of the native flowers around Gavillias and wattles. So I might use items like that.
Speaker 4:But with someone further down the journey of dementia we often kind of talk to them about things like they talk to them about their fern house or ferns and it's conceptual at that level. So I like to bring real ferns in or pictures. You know, like that's why I use the pictures and I found it really effective. And of course there are some people that can't kind of the perception. Or if someone's got some visual perception issues or is vision impaired, that's problematic, that doesn't work. But generally speaking, I'm working with someone that can can kind of see what I'm showing them.
Speaker 4:But I then think it might be also the tone that I use. I use a tone of familiarity. I speak like I know people and I use their name and I say, oh, someone said to me once um, do I know you? And it just came out of my mouth and I use it all the time. Now I said, well, I think I know you. Your name's Betty, right, and I'm Mori. I'm pretty sure we've met but I can't quite recall where.
Speaker 4:But I do know that you like this song and I'll play and you know you kind of move forward and move through it and I think it's the tone of familiarity that really strikes. It's kind of you see, the inauthenticity when a lot of our team members who are working really hard and fast, they use the word sweetheart and lovey and they say, oh, hello, I, lovey, how I, and it's kind of doesn't sit or or ring through, and I think it would be good if people could understand or hear themselves, because when you use tones of familiarity it's very, I think it's comforting. You feel safe, you feel I know you. I don't know why. And this is saying, and I guess we've all heard it people might not remember who you are or your name, but they will remember how you make them feel and that's why I use the bowler hat and the and the, the boats.
Speaker 4:I just like a bad old entertainer and it's kind of like that. You know, but Abbott and Lucas, stella, charlie Chaplin, esk, you know, bad, reeks of a bad entertainer. So some people see me coming, they go. Oh no, they know it's going to be bad jokes, mischief they, you know, if the context is provided or they kind of get a sense of it. And I remember once telling some people jokes and I'm laughing and some not laughing, and I got better at doing it. And you know those old ones like buttock, buttock and leucastello. There's one that I do all the time hey, look at that bunch of cows over there, not a bunch of herd, a herd of what? Heard of cows? Of course I've heard of cows. No, no, you idiot, a cow herd. So what if a cow herd? I've got no secrets from a cow, don't?
Speaker 5:allow, don't allow, don't allow, don't allow.
Speaker 4:And I might give that to my buddy and I'll get them to read off and say, oh, they're gonna help me to a comedy act. And people say, oh, but they don't understand it. I said but that's the point. The point is that they know the rhythm or the pattern of it and they're laughing and so they feel like they're actually participating and they may not comprehend exactly what happened. They're always terrible. I remember one guy say he's terrible.
Speaker 4:Now he may or may not. I mean, who do we, who were we to say that they didn't get it? Anyway, I've majorly digressed with that, but I really do think that it's important for people to feel safe. That's the primary thing that I want people to feel, particularly when they're sitting in grief and sitting in loneliness. I did wanna mention the story of Reggie Tubb. Have we got time?
Speaker 2:Yeah, yeah, I think probably tell us that story of Reggie. And then we have one question that we always like to ask everyone who does the podcast, kind of at the conclusion. So we'll ask you yeah, so harvesting history. So I met this guy.
Speaker 4:I was asked to see this fellow and we'll call him Reggie Tubb Well, that's what I called him and basically what happened was basically what happened was he had a very traumatic experience prior to coming to this aged care service and then he was brought in, under very traumatic circumstances, unfortunately, and then he sat and he was what they called it challenging, and he was the one who was the one who was challenging elder I term I don't like to use at all, because that's kind of a staff focused term, isn't it? I call it a term of usance, wandering term of usance, bpsd term of usance, all terms of usance, staff focused reporting. So anyway, I apologize to anyone that reports like that, and well, I don't, but the thing was is that I said, okay, tell me about Reggie Tubb. And they said, oh yeah, he's aggressive, he's non-compliant and he's angry. That's really helpful and this is from a lifestyle person who has really turned out to be a really great person. But their perception of this man they were a bit lost, they're a bit scared, a bit fearful. It was. He was really difficult, so he had this upper body strength and agility. He was non-ambulance, so he's in a wheelchair but he could really move. So I said, okay, tell me a bit more about him. Oh, he'll hit you.
Speaker 4:I said, okay, can we go back to his file? Can I have a look at his file? And they are. I said it's okay, we've signed a contract Like, just let me have a look at it. So, ed and Sory, there was three things written down. So I do my talks are always based on what are the three? Actually, I'll ask you if you couldn't communicate tomorrow, if tomorrow you could no longer communicate, what three things? Don't tell me what they are, you can tell me later. What three things do you want people to know about you? What are those three things and are they gonna be enough? So, yeah, right, you can come back on that one. So this is part of the presentation I do, anyway.
Speaker 4:So I went to Reggie's file and there was three things. He was from a town called Junee, a town I know it's in just Southern New South Wales, an old sheep shearing kind of town, beautiful old streets with Victorian oh, really long, we call them Victorian, that's the Queen Victoria era awnings, and a beautiful town with a lovely courthouse. And then it said in in parenthesis what I love he used to get on the Wallaby track or something right. So I know that. The Wallaby track. You know what a kangaroo is, right? Well, a Wallaby is a small kangaroo, it's a different kind of species of kangaroo. And they leave a little trail, they follow a trail and that trail gets worn like a walking path, but it's really narrow one. Well, this is what itinerant workers would do during the depression and post and in wartime and post war, and so a lot of itinerant workers would walk the Wallaby track and as they walk they might sing. So I knew a few songs, like Road to Gundaguy these are Australian songs and Click Go to the Shears, which is a shearing song.
Speaker 4:But the key thing was is that he's, they said he was a butcher. Now, butcher could have also been an itinerant worker butchering at different properties. But the thing about a butcher is, I just happen to know this. I don't know why I know this, but I just happen to know stuff. Butchers have a backwards speak where they turn the words backwards to talk about meat in front of the customers. So Reggie Tub is butcher backwards and Reggie Tub Clat is butcher talk. So you just turn the word backwards and they would use this to talk about things in front of customers.
Speaker 4:And in the seventies, I don't know about you, but when I was a kid, I thought butchers were really flirtatious and I thought, why is that butcher flirt with my mum? And they'd say things like doog gels, which is good legs, so you know. So there's this language, this secret clan language they used to use, and I wrote down a whole bunch of stuff backwards and I don't have this piece of paper. It really upsets me that I don't have it. I wrote down a whole bunch of words backwards, ending on Reggie Tub, and I went into the room and I said I need really to let this settle. And when I went into the room there was Reggie Tub sitting in the chair, looking forward and down, with this awful color gray color, you know cortisol humping around his body, and he was in this really turgid. It looked like turmoil in his face and his eyes were hard and I just thought, oh my God, he looks like he's really in an awful, awful place.
Speaker 4:And so I approached him and then I started to speak and I started to say backwards hey, reggie Tub, how are you? And I said it backwards right, I had it written down so I could pronounce it, and then I'd say and then I let it sit. And then I'd say hey, reggie Tub, what are you doing? Nothing, sat there, left it for ah, maybe you know 10 seconds, 20 seconds. Hey, reggie Tub, what have you got on today? And then I could start to see something happening.
Speaker 4:And then I said a few more things and then finally, as he started to, his face sort of changed a bit, I spoke forwards and I said hey, reggie Tubb, how are you? And he turned and he looked up at me and he said all right, how's you? And then there was this little pain in my arm. That was my lifestyle part, the squeezing the crappers out of my arm. And she said he's talking. I said wow. And so I said I'm all right, how's about you? And he goes yeah, I'm all right. And I said they tell me you're from Junee.
Speaker 4:So I start, I get down on my knees. So I'm down on my knees. Now I got a little stool I use and I get down below people's eye line, and he said, yes, have you been there? And I said no, but I've got a tea towel from there. He said, oh, let's have a look. I haven't got this here, but I'll bring it in next week. It's got the courthouse on it. And he smiled and I went do you know the courthouse? And he says I know the courthouse very well. There was humor.
Speaker 4:And I spoke to him a little bit more, using the word Reggie Tub at the end of every sentence, and I had the ukulele which I had draped over my back and I just pulled it to the front but I just was staying about that far away from him so that he couldn't hit me and he looked at it. When he looked at it, I said hey, reggie Tub, I've got a song for you. He said oh, what do you got? I said rode the gun to guy. I click go the shoes. And he said rode the gun to guy, thanks. And so I went. There's a track winding back to an old fashioned shackle on a route to gun dear guy. So I go.
Speaker 4:So I'm playing this song and he's twaddling his head and tapping his hand and I was like well, and the look on his face, the color came back to his face and I thought about I can't remember, is it dopamine? Now, when you look and you connect with people, the hormone dopamine increases in your body. And whenever you have these increases in any of the loved hormones, that cortisol drops and what we want to do is get. We want to get rid of cortisol. It's a terrible hormone, it's a bad drug, it's the heroin of the hormones. And so I said hey, reggie Tub, I like to come and see you. Next time I'll bring the tea towel. Yeah, okay, and I don't remember if I shook his hand or not. That's always my aim is to try and get there. But I felt safe.
Speaker 4:And so word went around the service really quickly and the manager wanted to talk to me and ask about this magic. And I said it's not magic at all. I just tapped into a part of his brain that had been locked away. It's called Reggie Tub Clat. It's back. And I explained what it was and I said and like, if I could say anything, I think that if you could forget calling him by his name or Mr So-and-so, just call him Reggie Tub, because he relates to that. And this is why. And tell your team, like, really and particularly stuff from non-Western countries, you know. Like tell them it's okay to do this, this is what you want them to do, and if anyone can sing that song or hum it he, it'll probably help. And what happened was was that it demystified him Because other people were going look, wow, look at that. And other residents would watch.
Speaker 4:When I was with him and we would a nine times out of 10, I would start, I would use, I would use Road to Gundagai to start and we talk. My butcher gave us a Cape Grim hat. Cape Grim is a Tasmania. It's got a cow on the front and we'd pop that on him and we'd sing songs. I bring in photos of cuts of meat from my butcher and so it changed. It changed him and it changed me. That story changed me. I realized the power of what I was doing. I mean, that's probably the most significant breakthrough I've had. I think Jimmy the satellite one was another good one, but that profound experience made me realize the power of what was achievable by knowing how to put stuff together and harvesting history and just putting it together and going. What can I do? Someone once said to me a lifestyle person said to me I can ask the questions you ask, but I can't do what you do with the answers.
Speaker 4:And it was such a profound. I said to her I'm so glad you said that because that's really got me thinking, Because I'd really love to be able to share what to do with the answers. And that's the key. It's what you do with the answers that really counts, I think. Anyway, I really did want to tell you that story. A lot of my colleagues are bored with that story. They've heard it so many times. But for me it says everything about. Routine was what I used with Reggie Tubb, preferred interaction style. It was a knockabout mateship kind of hey, yeah, what are you doing? Just talking to him like it was direct and the invitation, I guess, must have been delicious. You can't knock back that song. If you know, read the Gundaguy and it's not a song of your culture, it's a great song. It just tugs at the heartstrings.
Speaker 2:I have well, I'll save it for another day, but I have a really magic story of oh, because this won't be the last time we talk. So but, a good one. Remind me next time. This is your homework. I'll tell you the story about my magic story. I'll have to write it down. Yeah, with Waltzing Matilda. With Waltzing Matilda and one of my Australian residents. Yeah, and Waltzing.
Speaker 5:Yeah, I think what's so amazing is for any of us who have had a breakthrough like that, you never forget that story. No, you know those stories, those feelings, those emotions that are all tied into that experience. Thank you for taking me on that journey.
Speaker 4:It's really no, but you're right. It is so true that I always used to remind my colleagues, you know, like you've got stories like this, guys, you know, write them down like, share them, tell them or draw them, whatever, because you know we all have good stories, you know, and it's by sharing them and how we got there that inspires others. You know, that's what I think we need to do, and that's it.
Speaker 5:And taking the time to sit in with them like, enjoy that story, appreciate what you've been able to do for somebody. Don't go so fast that it's just you breathe through it and you forget what you've done or you're not registering what you've done.
Speaker 4:That's what's good about reporting, because it's like reflective practice. You know, like I have to report what I do, and so that's one of the beauties of something I introduced to my work rather than just writing a few lines just to write on paper, I used to get on the computer systems and tell them oh yeah, you know, this is how we report, and they let me do it. So, like I just started doing it and figuring out what language you know like, using words activated by Laurel was. Laurel participated in a one-on-one room visit session with a positive outward experiences observed. She was readily activated by the song, you know, watsingh Matilda. This was expressed by her bouncing her legs, and so I worked out how to report that stuff and it was really helpful because actually, you know, I had to write about Reggie Tubb. Unfortunately I've still got the report, but it's only like a three lines because back then we only did internal reports. Anyway, sorry, I'm digressing.
Speaker 5:Oh, no, it's great. Okay, so I think we could speak with you all day long, but I'm going to ask our final question. So how would you like to redefine the journey of dementia for the people that you work with and through your work and your practices?
Speaker 4:Wow. Well, for the people I work with, I had to redefine it. I think that it's important that I'm surprised at how little either people know about dementia that work in the sector, or what they lose sight of. And that is what, as I said earlier that people live in intuitive space, in these intuitive thinking, and it's really important to understand that they are really operating on what they're feeling, whether that's dementia, is early, cognitive, mild cognitive decline or latter, but particularly if we're talking about loneliness and depression as well. So I'd like to see people also be aware that it's important how we speak to people and that we slow down, because we throw a lot of data at people and we ask a lot.
Speaker 4:I've heard people really nice that what would you like for lunch? Would you like the fish or the chicken? The fish or the chicken, and they're still going. What would you like for lunch? They're still processing that. And now there's these other commands. Judy Cornish said a beautiful one. She said go into your room and put your shoes and socks on. And Judy was explaining that. You know, you've just said three things Go into your room, put your shoes and socks on. And not only that, you've told them to put their shoes on before their socks. So you've done it in the wrong order.
Speaker 4:And so it's about letting people process what you're asking them to do, and I would really like to see people know more about the person they're with. It's not enough to go in and say, oh how about those Newcastle Knights on the weekend to someone that doesn't really care about the Newcastle Knights. It's important to know about them and I'm thinking for the broader community and for the world, what I'd like to see happen with dementia. I'd really like to see us rethink about how we think about age, because I think we worship youth. We shouldn't worship youth, we should celebrate youth. But I think ageism has got some serious, serious, serious questions to answer for the way the world is now.
Speaker 4:We kind of put our elders away and they used to sit at the head of community and they used to be the lived experience and so there was wisdom and even if the wisdom wasn't so really what you wanted or you know, I know maybe not everyone's wise, but whenever everyone's has experience and having that lived experience is really valuable. And I think as a society we've really lost touch with our elders and their plays. And as I become an elder and get closer and closer to that, you know I kind of worried that you know that I'm going to find myself on the scrap heap and I'm not going to sit in that spot where I place my, my elders, and I'd really like for us all our workers and our world to try and find a bit more time. I don't know how you do that, but I think that I watch.
Speaker 4:I watch my elders as everyone's frantically running around trying to carry out their tasks, and you could see them looking and being baffled. Okay, well, they're very busy today, aren't they? And you just think, wow, these people had so. Their sense of time was so different, and so now they're in this. Really fun the world spins. Bill Thomas talks about the world spinning faster and faster and faster. Yeah, and I think it's time to slow it down.
Speaker 2:Wow, that is an amazing answer.
Speaker 4:Really. Yeah, I thought it's been ordinary. I was thinking I'll let you down. No nothing about this last hour and a half it's been amazing, thank you.
Speaker 2:I mean I, I mean I, we literally jumped right in and we had to like start hitting record because of all the gold of what you were sharing. But so Ashley and I just want to, we want to say thank you for being here for the podcast. It's. It's going to be really special to have this, this episode, because I think what I appreciated the most about you know a lot of your comments, I mean, your stories are just so moving for one.
Speaker 2:But I think that a lot of times, people who maybe don't do the type of work that we have done, like throughout our careers, the term meaningful engagement tends to be a bit elusive in terms of what I really appreciated that you gave so many very profound examples of what that actually looks like, but also going through the structure a little bit and like just giving a little bit of you know again the method behind that, that skill and what you did. So I just I think this has been a really practical episode too, even though it's been mostly just profoundly moving, oh wow.
Speaker 4:Thank you.
Speaker 2:Yeah, and we're going to work together again sometime.
Speaker 4:Yeah, yeah, Look, I love, I love what you guys said. I was reading about you and when your questions came through I just went, oh, I'm in good hands here, because, yeah, no, because the questions were very thoughtful and it was. It was clear with your backgrounds and your study, you know that you, yeah, there was an insight there that I could, that I could sense. You know, because I, you get, you do get asked some questions and you really think, is that really kind of, is that really what we want to talk about? And so I was really encouraged when I got your questions. And then that's why I sent you that other little piece, because I thought, well, you guys will be able to, you'll, you'll kind of that'll intrigue you. So I was happy to send that.
Speaker 4:So thank you so much, Thank you so much for your interest and and, if you know, like seriously, if any creatives out there, like particularly actors, are thinking about this, this line of work, it is beautiful work, it's very rewarding and you learn very quickly and you learn from your mistakes. It's like acting, you know, like you learn from feedback, but it is such a, it is such a rich experience and my I'm, I'm, I'm like, I'm up here, like later and this is not unusual for me to be doing zoom calls and and things and working and tapping out stuff, because it's so compelling, the work is compelling and I think you, you guys, understand that yeah.
Speaker 5:Oh, we appreciate you.
Speaker 2:There is really not much more to say after that completely enriching experience. When Ashley and I first joined our zoom meeting to meet Maury Boise Barlin, we were off to the races immediately, so much so that we had to actually rush to start recording so that we didn't miss any of the valuable insights he was sharing. This was a very different style interview from all of the others in season one of our podcasts, but that's because Maury is such a unique individual who was gifted in so many ways. His extensive experience throughout his career in working in long-term care settings and specifically doing engagement work with individuals who are living with dementia meant that we were just thrilled to be able to hear and learn from his experiences. I think I can speak for both of us when I say that we were wishing immediately that we could bring Maury to our side of the world here in Canada in order to learn from him and witness him sharing his gifts.
Speaker 2:While the conversation was quite extensive and it took many turns along the way, there were a couple of main themes that could be beneficial to anyone who is caring for someone who is living with dementia, whether that be at home or in more formal settings such as long-term care. The first is the idea of intuitive thinking. At some point in the journey of living with dementia, there is a shift to a more feeling way of being, other than a transactional way. This means that we should be authentic and genuine, and we need to make people feel safe in interactions. For anyone who is in a caregiving role, whether that be at home, in the community or in a formal healthcare setting, this really speaks to the need to consider our own self-care. If we are operating from a place of stress or anxiety all the time, this will impact the person for whom we are caring, and it also underscores the need for us to slow down and be intentional in our interactions with individuals who are living with dementia. The other theme that was woven through all of the many examples that Maury shared is the importance of narrative and drawing in the stories of someone's life. Even if those are what some may consider to be quote-unquote, small stories or insignificant details, such as family anecdotes or inside jokes, etc. This is something that, as care partner for someone who is living with dementia, you can do, and it is such a key and crucial piece of the puzzle for how someone may have an improved quality of life.
Speaker 2:Finally, maury shared with us a bit of structure for how he approaches his work in engaging individuals and providing inclusive approaches.
Speaker 2:His concept of harvesting history so the life story coming from a perspective of curiosity and using the information that he learns about someone's history to weave into how he approaches his work and engaging them. Also, the practical thought of what type of approach people would need, or whether they would need routine or novel interventions, indirect or direct approach, and the idea of making the invitation to engage with him so delicious that someone would find it hard to say no. I personally was very grateful for his willingness to share his methods, because often when we are doing this type of work as professionals working in the field or as volunteers or care partners we may think I'm not very good at this, or I can't do this, or it doesn't come naturally. I think Maury being generous in sharing the structure around his methods will help all of us who listen to this episode to answer the question of now what do we do with the answers in order to make someone's day and quality of life better?
Speaker 2:We so hope you enjoyed this episode and joining us on this very impactful journey with Maury, with all of its twists and turns. Meeting him was a highlight of our first season and we very much hope to collaborate with him again in the future. Please do be sure to check our podcast episode page for several links to some great resources that were referenced throughout our discussion.
Speaker 1:Thank you for listening to this episode of the Redefining Dimension Podcast. We hope that you have found this information helpful and inspiring. No matter where you find yourself in the dementia journey, whether you are a person living with dementia, a healthcare professional, family and friend care provider, or an ally, we aspire to shift the narrative and redefine what dementia means to you.
Speaker 2:This podcast was made possible by the New Horizons for Seniors program. Our music is written and produced by Scott Holmes, the podcast was produced by Janna Jones, and we'd like to offer a very special thanks to our affiliates at Lifelong Inspiration and, of course, to our amazingly talented and knowledgeable guests who gave of their time to share their expertise with us.
