.png)
Capturing Essence for Care: Storytelling that Promotes Personhood in Healthcare
Capturing Essence for Care: Storytelling That Promotes Personhood in Healthcare Settings
Feeling rushed through patient interactions? Struggling to see the person behind the diagnosis?
Transform your senior care relationships in just minutes with evidence-based storytelling strategies that honour personhood in healthcare settings.
Listen for practical tools to:
- Open deeper conversations with seniors, even with limited time.
- Access life story approaches that reduce caregiver burnout.
- Hear real conversations with people with lived experience including persons living with dementia.
- Implement person-centred care that improves outcomes through meaningful connections.
Host Lisa brings together personal historians, digital storytellers, healthcare practitioners, and seniors themselves. Each episode delivers actionable insights for busy care teams seeking to capture essence through storytelling, writing, visual methods and more.
Perfect for: Healthcare providers, long term care staff, nursing home workers, home health aides, personal support workers, memory care teams, geriatric nurses, social workers, recreation, life enrichment and activity staff, family caregivers, and anyone passionate about promoting personhood through older adults' stories.
Join healthcare workers already transforming their practice. Start honouring the whole person behind every patient chart—follow today and discover how small conversations create profound care connections.
Capturing Essence for Care: Storytelling that Promotes Personhood in Healthcare
9. The Power of Reframing Your Caregiving Story with Ron Beleno
Ron Beleno is an active advocate for dementia, caregiving, aging and research communities. From lived experience, he encourages others to transform the challenging caregiving journey into one of growth and resilience through his innovative approach to narrative reframing and community building. In caring for his father who had Alzheimer's for over ten years, Ron shares practical strategies that changed his perspective and improved quality of life for his entire family.
Key points discussed:
• Reframing problems as challenges creates a mindset focused on solutions rather than obstacles
• Over 60% of people with dementia will go missing at least once – simple strategies like door chimes and community networks can significantly reduce risks
• Building a support network by sharing your story with local businesses and neighbours creates a safety net for loved ones with dementia
• Men often struggle to identify as caregivers and typically seek help much later than women
• Eliminating words like "good/bad" and "right/wrong" when reflecting on caregiving decisions can significantly reduce caregiver guilt
• The narrative we tell ourselves about our caregiving experience profoundly influences how we navigate challenges
• Approaching caregiving with a "gamer" mindset helps identify creative solutions to complex problems
Ron is an active member, advisor, and mentor to numerous organizations and educational institutions such as AGE-WELL NCE, Centre for Aging and Brain Health Innovation (CABHI) at Baycrest, City of Toronto's Seniors Strategy, SE Health (formerly known as Saint Elizabeth Health Care) and the Translational Research Program (TRP) at the University of Toronto's Faculty of Medicine.
To learn more, please reach out to Ron.
Thank you for listening!
Do you have a question or a topic related to "capturing essence for care" that you would like discussed on the podcast? Send Lisa an email: awestruckaspirations@gmail.com
Interested in learning more?
Intro and outro music with thanks: Upbeat and Sweet No Strings by Musictown
Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey. I'm your host, lisa Jaworski. Hello everyone, I'm here with Ron Bellino and I'm really excited to interview Ron. We have connected I think a couple years ago now, ron. I'm really excited to interview Ron. We have connected I think a couple years ago now, ron. I'm not even sure, but you've always been somebody that I felt comfortable enough to reach out to and you'd support the little initiatives I have going on, and you're such a wonderful voice and advocate. So I appreciate that so much.
Speaker 1:And Ron is an active advocate for dementia caregiving, aging and research communities.
Speaker 1:As a caregiver to his father, who lived with Alzheimer's for 10 plus years to age in place at home until January 2018, ron utilized technology, community creative strategies and access to research to support his family's life to live well and as best as possible. In recent years, ron has been invited to do presentations locally and internationally for Alzheimer's and dementia societies, communities, police educators, healthcare innovators and corporations. He's amazing. He shares his knowledge on caregiving as we age, ways to use technology for caring and living safely with dementia, especially for those at risk of wandering and going missing. He's an active member, advisor and mentor of numerous organizations and educational institutions. Further in his past, which is incredible to understand more about this guy that we're gonna speak to soon. Ron has a background in computer sciences, space and communication sciences, marine aquaculture, life coaching and culinary arts. I'm not sure if there's anything this person has not done. He was the founder and executive director of a youth career and employment center that served over 30,000 young people, immigrants and career changers in the Toronto area during its operation.
Speaker 1:Ron, I'm just incredibly impressed and I can't wait to get this conversation going and really learn more from you about I know the whole podcast is called Capturing Essence for Care and really understanding what that means to you and how all of this information and the skill set that you have really, really helps us and our community. So thank you for joining me.
Speaker 2:Lisa, thank you very much for having me here and I'm very excited because I've been a fan of your work in the past and I love this title Capturing Essence for Care. It has three key words for me the capture piece actually, it's all in the title. The essence I really believe that's something that people don't really understand, that there's an essence around so many things and you know that's. That's a beautiful piece of once you understand the essence. And, of course, the word care, which we're going to be talking a lot about over the next while. So, thank you for having me.
Speaker 1:Absolutely Well. I'm glad we could do this together and we talked very briefly before we pressed record and I liked how you had said you know you never know who's going to be listening and we might never know who's listened and who's been impacted or influenced by the information that we share. So I think that's important to note, that you never know how what somebody is going to take away Right and be able to be inspired by. So, yeah, I appreciate your time. Yeah, yeah. Well, just to add to that the one piece as we were saying that, able to be.
Speaker 2:Inspired by.
Speaker 1:So yeah, I appreciate your time.
Speaker 2:Yeah, yeah, well, just, to add to that the one piece, as we were saying, that is like for me, everyone has their own words and phrases for me. What are those little golden nuggets that we don't? Realize is gold to someone else okay, I might be saying something, and we could have already said something in the short period at this moment and it's already gold to someone out there, but we'll never know so yeah, no, yeah.
Speaker 1:That's awesome. So tell me more about your role on. I mean, we read the bio, but I want to know really the, the substance and and how you got started in this so I know it was caregiving for your dad. I'd love to hear more about really, I guess, the beginning of that journey and how it led to you becoming such a strong advocate that you continue to be now sure, sure.
Speaker 2:So my story isn't new. It's a story that many people have already gone through ahead of me, and it's also a story that many other people are going to go through in the future. I've always said caring for someone is not new. The only thing is we don't talk about it enough. The stories are there. The successes, the failures, all those lessons are out there. It's just a question of who's telling those stories and are people able to hear them so that they could support themselves in their own lives?
Speaker 2:For me, it was a small family. There's my dad, ray, there's my mom, ronces R-O-N-C-E-S I always have to spell it Ronces and my dad, reynaldo, and that was it. Pretty much the three members of us Filipino background. I was born in the Philippines but came to Canada when I was two. So I've been in Canada for many years, settled in Toronto, in the Toronto area, scarborough. For anyone who listens, scarborough is. We're always proud to acknowledge Scarborough and my parents. Yeah, when they had me, I was their only child and I was their favorite, right?
Speaker 2:You know some people, uh, you know I could tell if people laugh, then they're paying attention. If they don't, then I gotta change how I tell the story in the audience. That's it, right, depends on the audience. Oh, you don't get that joke, okay, so I'll have to adjust how I so um and oh and I always have to tell this story very quickly there, lisa is that Filipinos like to combine their names together. Okay, and you know, the parents usually combine their names and that's what they mean to a child. So my dad's name is Reynaldo, reynaldo, and my mom is Ronces, r-o-n-c-e-s. Okay, so they got that from the Roncess and the Reynaldo. They got the Ron from my mom and the Aldo from my dad and I'm Reynaldo, okay, so that's a you know a common name from, yeah, reynaldo, and there's a famous soccer player named Reynaldo.
Speaker 2:So that's easy. But if my dad went first, okay, and they did it the other way around, it would have been. That's easy. But if my dad went first, okay, and they did it the other way around, it would have been ray from reinaldo and ron, cess c-e-s. They would have got the ray and the cess. And I always tell people, if you didn't know how it was spelled, either way you, you would be introducing me as racist. You know, onto this podcast and everyone say, well, he's racist, that guy over there is racist and I think I would have had a different life. So I I do think, based on your name, your life sometimes is created the story is created based on someone's name, so yeah, people would be judging right.
Speaker 2:So he said, yeah, that guy over there, go speak to him, he's racist uh so so that's so, that's that, but how?
Speaker 2:so that's a little bit about um, the family dynamics. And then, back in 2007, my dad got diagnosed with Alzheimer's. We knew nothing about it Besides what most people know. It's just simply someone that forgets. It's more than that. I won't go into too much detail on that, but it's more the story of when he got diagnosed. What you don't know actually sometimes can help the story, but sometimes it could be worse. Sometimes you want to know a little bit more about the story of a life with, let's say, alzheimer's.
Speaker 2:Pretty much the stories that I was receiving over the 10 years that my dad was diagnosed and lived with it until his passing in. Okay, over 10 years. I would be visiting them. I don't live too far from them, so I was living with them some days. Sometimes I would be visiting and whenever we had a challenge, I would reach out to the community. Okay, different organizations, different healthcare experts, and their answers were not satisfying what we needed. And I always felt that, hey, there's more to this right, there's more to finding a better solution. And that's just the kind of person I am is someone who takes on challenges. I listen to problems, which, for me, if someone speaks from the language of problems, they're talking about the past, in my opinion, whereas if I say, okay, if I'm going to change that problem into a challenge, I'm now trying to see what the solution is, or attack it into the future. How do I take on this challenge? Okay, and I just came up with solutions. Where I hacked away at it, a lot of it was with technology.
Speaker 1:And that's how it all started.
Speaker 2:You know part of it. I had a life where I also used to I won't go into it here, but used to be quite this knowledge expert on growing coral in the home. So Nemo and Dory the cartoon.
Speaker 1:The Finding Nemo movie.
Speaker 2:The Finding Nemo. Yes, the Finding Nemo movie.
Speaker 1:Okay.
Speaker 2:And, as you said, marine aquaculture. You said that is one of my qualifications.
Speaker 1:Yeah, yeah.
Speaker 2:Yeah, so I was actually at a point for a few years speaking up and down the east coast of North America from Florida State, new York State, going into aquarium clubs and in front of public aquariums talking about how you can grow coral at home. I just became quite that expert. But while I was doing that, I had technology caregiving for my fish and coral. I had cameras, sensors controlling their lights, all that stuff. And then that's where I transferred some of that technology into my life with my dad, which I didn't realize I would, and, as I said, one of the challenges for my family was my dad going missing. So someone living with dementia, alzheimer's.
Speaker 2:There's a high percentage, more than 60 is out there but it's like the flip of a coin someone's going to go missing, or the person with dementia will likely go missing at least once in their journey. And I became known for that and to this day I became quite the expert, presenting across the world on that topic, innovating on that one challenge of someone that goes missing. So that's how it all started, and then we'll continue in a second here, I'm sure, with other questions as to what I'm actually doing.
Speaker 1:oh, I want to know about that. So, before we dig in too much to the other pieces, I am curious if you could share maybe a little bit more about you know, if somebody does go missing and if it's that high of a rating where it's over 60%, what would you suggest or what did you do that helped in your case? And I guess also you know what have you learned since that if there's other strategies or resources that would help individuals going through that same journey?
Speaker 2:now yes, so. So thank you for actually bringing this topic up even more. That rarely do. A lot of people say, well, what did you learn, ron okay, from that? They just know it's an issue. And I said, yeah, well, it's one of those words, a life and death issue. Right, and I have, because I speak across Canada and internationally. I've spoken to 1000s of caregivers by now, not just to, but with okay, so I get to hear their stories you know.
Speaker 2:So there's one where you know I'd say, yeah, I'm speaking in front of front of a crowd, I'm speaking to them, but what I spend more time on is trying to speak with them so I can. So I have these conversational presentations where it's like I'll tell a little bit about what I need to tell them. And then, by the way, I hope you heard you know, hey, there's a challenge here. Do you have any questions on this challenge of someone going missing? So, just like you asked there, lisa, for me first and foremost, is being aware that this creeps up on a lot of families and they don't know that this is even a concern. Rarely does someone get diagnosed with a dementia and Alzheimer's and say, hey, you know the person you're caring for, let's say your dad Ron. He might forget your name. You know they spend that time of letting you know. I said, great, that's not what I really am interested in now that I've gone through all of this. I said what are the concerns, the dangers, the risk to everybody, okay, and I said you know your dad's at risk of maybe getting lost, going missing? And it was one of those where, first, be aware you know that, hey, is the person you're caring for. I'm gonna let's use my dad as an example, mister. So, hey, is your dad like you know, like sometimes going outside the door, confusing which room he's going into? That's a difference of someone stepping outside in the middle of the winter in their backyard and then freezing to death, which I know a couple families that have gone through that, let's say the tragedies.
Speaker 2:Um, so it's just one of those where I say, first and foremost, one quick tip I says is protect the home. Okay, in the home is the door. There's something called the silent exit, when someone would just quietly leave the house and no one knows that they've left. Right, so you could easily solve that with a door chime, something like a door chime. Or some people even put bells on the door handle, okay, just so that you can hear that someone has opened the door. Yeah, so that is a very simple one. Then Then there's other technologies like GPS devices, locating devices. Those come with a little bit more of a deeper dive into the conversation of privacy. It's not just about the caregiver, like me, or the care partner, but it's also about my dad's privacy and he, technically, is allowed to go out on his own.
Speaker 2:You know and go wherever he wants. But so that's us. That's a few there. So one of the things that I really suggest a lot of families do, if they're willing to, is to trust people, to tell your story to them with your challenges. So for our family, I increased our safety, meaning that I was willing to tell the variety store that my dad would go to, the coffee shop, that he would hang out at, the restaurant that he would go to take out, and the church.
Speaker 2:Some key people knew that, hey, my dad is at risk of getting a loss. Can you be another set of eyes and ears out there? Here's my business card if you need to call me, okay, uh, if it's really late and it's dark, you know, I don't know if he should be coming home that late give me a call or, you know, just get in touch with me. So that had to be having me in a space where my mom was fine with that as well, to say, hey, show a little bit of vulnerability, saying you know we could do some help you know, community and that actually made my life so much easier.
Speaker 2:So that is one of the tips I said. It's not high-tech, it's, it's the low-tech right. It's about asking for support and help it's increasing your community, right it's.
Speaker 1:It's trusting, yeah, your social circle. But extending that to mean, I think, a lot of correct me, because you probably know this statistic better than I do, but I think when people get lost or leave home, usually it's in a very small radius in the distance of where they live. So what is it like? Five kilometers, or not even in the distance?
Speaker 2:of where they live. So what is it like? Five kilometers or not even? Yeah, it's within their walking distance. Again, whatever you think walking distance is, yeah, that's usually where it is yeah, so that was smart. Well, if there's a difference of smart when it comes to caregiving and caring, and there's a difference where there's some people that it's like they think they have a different narrative in their mind that it's it's about being proud, it's like let's not show that we have any concerns, that we're fine, right yeah, I'm not judging this is not about judgment, you know in people's narratives or stories.
Speaker 2:But what I can say is if you usually go with that narrative of trying to not bring in others a care team in the community, chances are you individually are trying to live the superman or wonder woman. Life is what I say. You do it by yourself thinking you can do it. Chances are you're going to crash and burn much sooner as a carer is what I've always majority seen.
Speaker 2:So yeah, that's a really good point yeah, so that's that's, and a lot of it is just the narrative of what they have okay and I'm going to add one more piece here, lisa, this is a big one that I'm trying to put to all the gentlemen that's listening here.
Speaker 2:OK, because we're going to have a lot of gentlemen listening. All the guys, all the dudes, whatever you call yourself. You know I, there's different phrases. I know from my English chaps, my friends. When I chatted with them they said you know, ron, we grew up with a stiff upper lip. That's what we've been told. I never really understood what that was until they told me, since we're tough, we're like you know, but these came from a group of male caregivers, okay, that have breakfast every day in the Durham region and they're disclosing, they're vulnerable to each other, saying said ron, we had to overcome that. You know like that, that we were okay to share with others, nice, so what I'm saying is that a lot of men do not go out there and they have this narrative that they're stuck with, that I gotta be tough and all that they're saying.
Speaker 2:Not judging you, just chances are you're gonna have more challenges if you stick with that story.
Speaker 1:So yeah, so true. So so true. It's harder to, I think. Yeah, I think it's maybe easier or more natural for females to have a bit more of a social circle or share the emotional side where you're right. I think men tend to feel more proud and it's part of the identity to feel like they should be able to fix it Right.
Speaker 2:Exactly.
Speaker 1:And not ask for help or when they ask for help, it's much later than women.
Speaker 2:Like much when they're ready now crashing and burning.
Speaker 2:What I could say for sure, this is Ron's facts. So this is not a science, but Ron's facts is that I've done, if not hundreds, of presentations in front of people, in person, online, and when it's with caregivers care, you know the family caregivers on it's usually 90% women staring at me and a handful of men. Okay, if there's a hundred, that is a stat that I can say for sure I have out there. Am I complaining as a, as a gentleman that's speaking to women, like when the women listen to a guy all the time, I'm saying, okay, I'm not complaining, but I'm just saying, hey, man, it'd be great if you can show up a little bit sooner than when you're ready now crashing and burning, okay, and uh, women.
Speaker 2:In my opinion, that's why majority of caregivers are women. Well, not why, I wouldn't say that's why, but it's just that I feel like that they are better at caregiving, um, that they seem to take on that role, that leadership role, um, yeah, just how they approach it, the narratives that they have. So there's a difference. I'm waiting for someone to help do a study with me on this. No, just when do men really consider themselves caregivers and when do they reach out versus women? You know the difference. Yeah, yeah, one day.
Speaker 1:Yeah, yeah, it's so true. So how on that? Note, then, because you are a male, it's so true, so how on that?
Speaker 2:note then, because you are male did you?
Speaker 1:how did you get? What do you think helped you to become such a strong advocate and to take on this care partner role? And really, you know, I guess, bring your voice forward in order to help others and your dad. That's where it started. I think it sounds like yeah.
Speaker 2:But where do you think that came from and why? Oh OK, love the. Why question the why is a powerful question for me, so I was hoping you'd be asking me the why some people don't realize the power in the why?
Speaker 1:okay, I'll come back to the why in a second.
Speaker 2:But how did that come about? Rarely do I get that question, but it's a question I really want to tell people of. How do we connect the dots? Okay, so so you're, that's really what you're doing. You're connecting the dots for the audience here. I love that. That's a tagline. I use all the time connecting the dots In whatever, but for me it's connecting the dots in life. So let's connect the dots a little.
Speaker 2:Let's go back into the history of Ron For me. It took me a while to figure out how did I even get here? It was simply because I really come back to that concept of challenges versus problems. I grew up with that word a lot in my world. What's this challenge in front of me and where the challenges came from is because Ron himself loves games, games, sports. So a lot of things are sports related for me growing up uh, swimming, volleyball, baseball, played a lot of those sports. Piano for me was playing. Piano was a game, even though it's creative arts and sort of sort of it's a challenge. Okay, can I, can I play this piece? Can I master this piece? Board games, games, card games, video games. So I did a lot of gaming. Just think of Ron as the gamer kid growing up, and when I say gamer, a lot of people here who might be listening. The younger crowd will always think video games.
Speaker 2:But you can play games with a low-tech piece of paper and a pencil and there's games out there. All that gaming is about. Okay, how do I physically solve this challenge? How do I, you know, mentally, how do I? Sometimes it could be emotionally okay, Like when I would get frustrated not being able to play the piano song properly. It's like, why am I not playing this properly? You know it's uh. So all that is about. I've always felt there's always an answer and there's a way to conquer something. So that's just how I've gone through life. That's why I do a lot of things like okay, I want to go to culinary school and, just to be clear, not to be a full chef, but I enough that I have. Okay, I want to conquer this. So I understand all the how to make a good sauce and all that. That just ended up how I approach the life of caring for someone with Alzheimer's okay, it's like oh, we're gonna have something that's gonna happen.
Speaker 2:So I tell this story all the time, uh, but I sometimes don't have the time to share it. But that's what I want to squeeze in is, when my dad got diagnosed, we were in the hospital and we didn't know he had dementia. We're're dealing with diabetes. He was there for a few weeks and the doctor says oh, by the way, I'm pretty sure your dad has dementia. And I give him about two to three years, just like, with no preparation, and it's like I look at him. I said two to three years of what doc? He says oh, I thought you, but you, you're figuring it out what I'm.
Speaker 2:He's probably saying it's like of his life left right and I and I'm like not processing this and I'm saying two to three years of wedding says, oh, I've been around, you know this a lot, you know, and your dad's not well, and you know, let's just prepare, start preparing, you know, for his end of life. They said, oh, okay, right. So now a lot of people question that like like, why did the doctor do that? That's dementia, that's not like something that's you can yeah.
Speaker 1:Bottom line. When was that Ron? So you said he was diagnosed in 2007,. Right, yeah, so that would have been 2007-ish.
Speaker 2:Yeah, 2006, 2007. Really, yeah, that's how you know. And then he said oh, by the way, you know, we're going to go do some more tests to reconfirm, to confirm this but he already had alzheimer's for a year or two. Just, we didn't, our family didn't know, we didn't right, we couldn't get him to the doctor there was a lot of that stuff but in the emergency room, like after a week, um. So in a weird way, not a weird way, but I took that on as being grateful, okay. So I accepted that story. In all honesty, I didn't really push it with my mom or my dad to say, hey, dad, you got this much time left, okay, my dad wouldn't have understood properly. And my mom I know, just, sir, she's just mom, you just got to make sure we're prepared for dad, but didn't give her timeline, okay. So I was kind of buffering that.
Speaker 1:I was being Superman, let's say.
Speaker 2:But I looked at it and I said you know what if the doctor told me two years? Let's see if I can get my dad to three years or four years. That was my goal, and that was my quiet little goal saying how can I give him the best life.
Speaker 2:You know, if it's two years, let's just see what I can do here. Okay, but that was again my individual goal. It was a challenge, lisa. We got him to 10 years. Okay, yeah, it wasn't four years, it was ten years. And so in a weird way I kind of I'm grateful to that doctor to kind of like he started me on the track to say, let me take this all up as challenges and have that story like, okay, this is a challenge. We may not succeed with some of these challenges, like he still went missing, he still got lost, even with the best technology and and support in the community, but that challenge and the failures that come with that are much less severe because we were able to be more prepared. So I really believe, when it comes to caring, a lot of this has to do with the conversation people have within their two ears, within their story and narrative that they have the way you interpret it.
Speaker 1:Yes, the way you interpret it, the way you interpret it.
Speaker 2:Yes, the way you interpret it, the way you pursue it, I say how do I attack it? Where some people don't attack it, which is fine, as I said, I just believe that sometimes the narrative can make a big difference in how you move forward.
Speaker 1:I just have to pause here because it's from what you're saying and so I want to make sure I have this right the doc. The doctor said it was you and your dad in the room when he said he has two to three years left my dad was like on the side.
Speaker 2:He wasn't, my dad wasn't hearing the conversation. He didn't hear the conversation. Yeah, yeah, okay, so you didn't. You didn't share that with him. You were able to kind of keep that to yourself and privately think let's see if we can get him.
Speaker 1:He didn't hear the conversation, yeah, yeah, okay, so you didn't share that with him. You were able to kind of keep that to yourself and privately think let's see if we can get him to more than two to three years and make it four. Is that right?
Speaker 2:That is correct.
Speaker 1:Okay, that's that, I guess. Sorry to go on a little bit of a tangent, but it's one of those messages where, again, like something like that, I feel like, even though sometimes maybe somebody would be upset from hearing their diagnosis or hearing, it's still something where it was about your dad and he didn't get to learn information.
Speaker 1:That being part of it the other part being the way you share information. I think we just need to do a better job on how we're sharing information, what we're actually saying to someone. You know when it when we're talking again about. It's a different way of talking about life and death and how somebody perceives that right. Like, yeah, somebody might not have been so strong like you to think, okay, let's see what we can do with that and make it better. Like some, that could devastate. Yeah, say yeah, say your dad right, if he had heard that.
Speaker 2:Anyway, I just had to kind of process through that and I I just, yeah, well, let's let's stick with it for another minute or so here, lisa, because this is really important here, that you're you're really, I think, getting some. Why share that story is because I really want people to understand exactly that, that you can receive inputs and information. What I can control is the narrative. It's the story. No one can take that away from me.
Speaker 2:How, how pretty or ugly it is, it comes back to me as to how I received it okay right, um, and it is one where that piece is something that I've worked on since I was quite young. In my high school days, I was fortunate to read so many personal development books, and I think that's a big part of it as well being educated on different ways. Again, I'm not judging people if they have a different story. I just choose the stories that I believe are much more stronger and powerful for me.
Speaker 2:And that's what I'd like to share with people, but some of it does take a fair bit of work if you're not used to it. Right so yeah, so, yeah. So that's that I do want to respond to your why Okay.
Speaker 1:So the why am.
Speaker 2:I doing it Okay, so I spent so much time getting to break bread with people, have coffee, have meals Okay. Getting to break bread with people, have coffee, have meals okay. That's something that I've known in the community for and really, really get to people stories like what? What's their story? Exactly what you're doing here, and I'm always looking for that why and the why for me is the fuel. Okay, it's that feel to like run the car. Okay, to that added fuel to keep pushing someone forward In this space. Okay, I have a lot of whys in life, but for this one, the advocacy work, the one going out there, there's a few.
Speaker 2:One is I love it, I just enjoy hanging out with people. That's one piece. But the big why related to this is I was angry many times during the caregiving journey with my dad in the earlier years. I was directing it to people my dad, my mom and some people in my life. You know I'd snap, but I knew I was never that growing up.
Speaker 2:It's just something, how you know, like why the heck am I yelling at someone you know, mom and and then it's not to step away. I'm saying, okay, I'm actually having, you know, a break, a breaking moment, like I'm breaking down or whatever. At those specific times and I said, holy, if, if I'm going through this and I'm someone who's been well, let's say, trained myself, self-trained, and I've been coached a lot over the years, I've accepted a lot of coaches and mentors in my younger days and I know that I'm pretty strong at my emotional, mental, physical state of being, you know, in the past, I'm saying and I'm breaking down, I'm pretty sure there's a lot more people, a lot more that haven't had that support that I've had. That's having it worse and that's why every single day, lisa, sometime in the first hour of my day day somewhere I spend maybe three to five minutes just mentally getting myself angry on purpose, okay really yeah it's.
Speaker 2:It's kind of a weird, kind of it's not angry like I'm really angry angry. A good example is that the Incredible Hulk, if people know the green yeah, you know if you watch some of the how he has to control his anger.
Speaker 2:But one of the ways is he learns how to get angry, so he knows how to be in that state. It's more about like it's me fueling up. I'm putting gas into my, into my mindset and I say, okay, I'm getting up. I kind of get upset or angry or frustrated and I don't look at my story, I think of my story but I'm saying who's going through that right now in my circles, that's who I want to kind of support and cheer on because I know I could help move it forward for them. And multiply that by another 10 or 100 or 1000 people of my friend's story. So that's kind of my feel and that's kind of a big why. So that that's one of them.
Speaker 1:But yeah, I love that it's so important to think of it that way, right, like we have our challenges and life isn't going to be perfect all the time but instead of like what you've been saying the whole time, instead of seeing problems, seeing them as challenges and what can we do with that and how can we grow with that information and hopefully share what we've learned with someone else to hopefully make their journey a little bit? I don't know, I don't want to say easier, but maybe, maybe, yeah, oh, yeah, yeah yeah, yes, and you're impacting them for the word I use better.
Speaker 2:Okay, so the word I choose better for something better, and it's up for them to determine what's better. But without that little golden nugget, without that with them, it's not gonna be that much better. Right, so it gets. It's probably a little more worse so. So words do matter to me in many ways, but I also tell people how you put those words together and create that narrative will define your caregiving journey. It's still, you're still going to have those challenges, those successes, failures, failures, but how you respond to it exactly it's about the stories that you attach to it and the meaning you attach to those stories.
Speaker 1:So yep, the narrative you're telling yourself about those stories and also it sounds like for, like if I was to do takeaways from our conversation. I also think it's creating a sense of community around you, not holding in everything, all of your problems or challenges, but, you know, relying and trusting people with sharing your story. So all of those things really matter and building that. I don't know if I said it already, but building that awareness and accepting that, like sometimes, that this is the situation, rather than living in denial and being able to grow. Grow from that and build your support network around you exactly, yeah, no, exactly it's, it's.
Speaker 2:You're starting to go into a space where I I'm going to add this piece of information. Here is like a lot of people uh say, why me, you know why us?
Speaker 2:okay. So you're kind of you're starting to kind of get to that which you didn't. I don't think you realized all these stuff right and that's a narrative. There's a little bit of again um, you know, people can criticize me on this comment or not, but to me sometimes it goes a little bit into that victim story narrative. Okay, like, why me, why it shouldn't be me, why not? You know, I have always gone through it. Why not me?
Speaker 2:okay even though it's not, some people say, well, why not me with a happy story? I get that, but why not me with a, you know, a challenging story as well, right?
Speaker 2:right and I and so that's a lot of things I want to work on with the community, that we work on so many things but we don't work enough on exactly this, lisa, is how do we conversate and tell the story? And I think when we were prepared, when you were preparing for this, I don't think you realize that's gonna go into this conversation. I love it. You know the story. You tell yourself, okay, not just out there, and yeah, and it's that piece I'm gonna give one quick tip for a lot of people here's like the
Speaker 2:word. Yeah, so a lot of care, caregivers, care partners, okay. So words matter and I've told people. But you also have to protect yourself from words, and I and I know the community some of them aren't happy when I say this, but I said sometimes forget about what the words are. Whatever they choose, let them have it. Don't judge them if they say caregiver or care partner or no. I'm just a son. But, for example, in my community there's always been this shift oh no, don't use the word caregiver, don't use the word care partner, don't use the word informal caregiver, don't use caretaker. In the US they use caretaker. One's a taker, one's a giver. They're the same thing, it's the opposite. Right, you know what we got to and all that. But at the beginning we should tell them say whatever word you choose. I haven't going to use this word, so I like to use caregiver, caretaker, care partner. If that's your preferred choice, that's fine.
Speaker 2:But just so you know my intention is not to trigger you or offend you Okay if you get, get offended, if with any of my words, my words, no, in my story, that's on you. I want you to take responsibility that you have to look at how you get triggered. And then I remind people and not everyone knows this, this nursery rhyme, but you'll notice, lisa, sticks and stones. So sticks and stones may break my bones, but names and labels won't hurt me. We teach kids that, okay, when someone calls them you know a funny name or whatever. I don't know what happened to adults when they hit adulthood. They they get, oh, don't use that word wrong, or that's not the word we like to use. It's offensive, right, I might not think of it as offensive. I'll say I'm sorry, but in my family we're okay with that word okay it's like so, um, so it's just one of those things I want to.
Speaker 2:I want to throw out there, lisa, is that we have to protect ourselves from the triggers of some of these words, um, when the intention isn't meant to trigger us. That's just the word they use I think that's a good point.
Speaker 1:It's just the fact that we're not nobody's trying to intentionally harm anyone else. So the the takeaway, the underlying message, is really that we need to be respectful, but it doesn't mean that we're always going to say the right thing, because we're all different right and how I receive information could be very different for you than it is for me, but knowing that we're not trying to harm anyone with what we're saying, you know it's not.
Speaker 2:Yeah.
Speaker 2:And then people get stuck on that versus the real issue. Whatever we need to conversate on right. One last one sorry, and I know, but I'm jumping into one. So another word or another feeling. So care carers, caregivers, we communicate. The way we communicate is through storytelling. So we're saying, oh, this is what happened to dad at the doctor's appointment, or we had this incident where he went missing. You know, I was that storyteller and I still do that. But in that, depending who you are, whoever the listener is okay, that could be a researcher, who I work with, an innovator, who I work with, a student I do a lot of teaching at and a lot of schools as a guest lecturer on caregiving and they receive it in a different way and they want to solve some of these challenges. But we tell it in story and it's their job, the receiver, to try and pull out the golden nuggets. What's the challenge in this? It might not be obvious, but it's in the story, the challenge, but also the win and the success.
Speaker 2:They're saying yeah my dad really wanted to go to church but he got lost. Let's say, well, the win is that my dad's spiritual. How do we support him in that? So, all that said, you have to listen to the stories and a lot of it is feelings. We communicate through feelings. He says, oh yeah, I feel so bad that this happened, or I feel guilty. So I want to bring up guilt quickly, lisa is here's my suggestion on how to handle guilt.
Speaker 2:Many ways you can handle guilt, but again, it's how you receive it. It comes back to how you receive it and what you tell yourself. Usually guilt for caregivers, in my opinion, is self-judgment on something that happened. So I feel guilty that I put my, my parent in, let's say, a long-term care and it didn't go well, okay. So I and they said it wasn't good, wrong, it was bad. So my tip to caregivers very quickly to try it out. Just try it out for a month. If you don't like it, go back out to your old story. You can always change your narrative back to is remove four words good and bad, right and wrong if you can just not stick it into the vocabulary when you're talking about an incident that you didn't like.
Speaker 2:See if guilt creeps up or guilt goes away. See if guilt creeps up or guilt goes away, and I say replace it with the word did we do what was best at that moment of time, with the knowledge that we had at that moment of time, with the resources we had at the moment of time and the people we had, chances are. They said, ron, no, this is all we knew back then. So I said why are you judging yourself for caring Doesn't mean it's going to work out, but why are you judging yourself that you did something bad?
Speaker 2:Because, if you say it was bad chances are or it wasn't good, then you default to bad. There's no middle ground. Okay, so just those are binary words or extreme words, good and bad, right or wrong? I just say did you do what was best? And it still may not go your way? And if you remove some of those words, guilt many times goes away and I've had so many people come back and say I don't feel this guilty anymore. It didn't go the way I wanted to and we did our best, but I didn't do anything wrong.
Speaker 2:We weren't bad people Right.
Speaker 1:So caregivers have so much guilt that I'm trying to work on that so much, so much. Wow, really really good lesson right there and to think about not.
Speaker 1:I think that, yeah, the guilt. People do things like you said, like making decisions like that, you make it out of a place of love and care, but there's, I like that you also added you're doing the best you can with, with what you have in that moment, like the best information and the best decisions you can make based on the situation. Right, we don't make decisions from like, oh, I just don't care anymore, it's because you make based on the situation. Right, we don't make decisions from like, oh, I just don't care anymore, it's because you, you just can't right exactly yeah, and that's what they interpret that they didn't care, that they were.
Speaker 2:No, I said, did you care? They said yes at that. And so the key piece here as well you emphasize at least is at that moment of time, because what people have done around me, once I tell them some strategies, they said oh my gosh, ron, I did that wrong. That was bad of me. I said did you know me back then and you could have made that decision? He said no, they said so. Why are you judging yourself on information two years later?
Speaker 2:you got now, but back then you didn't have, you cared, but you didn't have that that's fine. So you did what was best at that moment of time. And then they I have a lot of people that just pause and stare at me and say, oh my gosh and I and coming back to storytelling, lisa, words do matter. What you say to yourself, that's more important.
Speaker 1:So, yeah, really good, really good. I feel like we could chat forever. I might need you to come back sometime, sure.
Speaker 2:I'm ready to go.
Speaker 1:Yeah. Is there anything else before we end that you feel like you want to mention or that you haven't yet had the opportunity to talk about?
Speaker 2:Yeah, well, just some of the affiliations and groups that I really support here in Canada.
Speaker 2:Just a few, and I also even asked you but here in Canada, like one group, is Age Well, which is Canada's technology and aging network. So Age Well focuses a lot on innovation for aging adults, older adults and their caregivers. So I do a lot of work with that. A lot of great researchers, academics, students, innovators trying to make Canada a leader in this aging space. Another one is the Center for Caregiving Excellence across Canada. It's kind of our caregiving organization, national one that's trying to make caregiving a national agenda item, everywhere with government and ever. So that's just to there. And one more group I'm going to sneak in here is Women's Brain Health Initiative. Women's Brain Health Initiative, wbhi great group organization trying to support women majority just by the title there, but that's everybody to take care of their brains. So I love them because it's more about going more upstream in all of this, being more proactive than reactive.
Speaker 1:A lot of the other groups out there.
Speaker 2:it's about how do we fix this or solve it when we're in the fire. We need to be more proactive, so that's why I'm a fan of theirs as well.
Speaker 1:So that's just a few that I wanted to sneak in here, and there's so many, and we can add all of the other ones in the show notes too. No-transcript.
Speaker 2:What would really matter to you? This might be the first time I got this question, which is a very deep question for me, because what I want people really to know is and this is not me trying to be selfish for myself, but to make people realize your voice and the ability of you to act. Okay, it's more powerful than everyone realizes for themselves that they're so much more stronger, much more. They could be more impactful, and that is something that I know I'm doing for myself, and people say that a lot about me and I get recognized for that. But I say, yeah, but you can do it as well. Okay, and it doesn't have to be at my level, or it can even be way past my level, I don't care. I just see so many people not realizing the power within themselves to make such an impact for their lives and if they choose to make the impact for a few other people in their world, that's what I just want to tell people, no matter where you're coming from whatever your past is moving forward.
Speaker 2:You can be so much more than you even realize you are today. Just you got to believe in yourself.
Speaker 1:Love it. Perfect final message and probably exactly what I thought you would say. So thank you for that, Ron. That's awesome.
Speaker 2:You're welcome.
Speaker 1:Well, this has been a pleasure. Maybe we can do it again. And yeah, just thank you for all of the work and all of the advocacy you're doing for you know, not just you, for for everyone really, and anybody going through that caring journey. Whatever we might call it, word wise, it doesn't matter, you're just doing so much to help your community. So thank you so much.
Speaker 2:Thanks, lisa.
Speaker 1:Thanks for listening today. If you enjoyed this episode, take a minute to look at the show notes for resources and links, and be sure to leave me a rating and review. And also you can follow the show so that you get notified of when the next one comes out. And lastly, if you can think of somebody in your life who you think would enjoy this podcast, I hope you share it with them as well, so that they can listen in on the conversations and ponder how to capture their own essence. Take care, and I look forward to the next time.
