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Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Kari McBride: A Daughter's Perspective on Caregiving and Dementia
Kari McBride shares her heartfelt journey as a daughter caring for her mother with dementia, offering an honest and compassionate perspective on the challenges and silver linings of caregiving. In this episode, Kari reflects on the early signs of her mother’s dementia, the emotional complexities of transitioning to long-term care, and the enduring importance of connection. She also highlights the role of advocacy in fostering dignity and compassionate care for individuals living with dementia and their families.
Key Topics Covered:
- Kari McBride’s personal caregiving story
- Recognizing early dementia symptoms and navigating challenges
- The emotional realities of transitioning to long-term care
- Maintaining connection and cherishing meaningful moments
- Advocating for compassionate dementia care and support
- Kari’s hopes for better resources and open conversations about dementia
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Season 2 of Redefining Dementia. I'm Jana Jones and I am thrilled to be joined by my co-hosts, daphne Noonan and Ashley King for another season of fresh conversations, new insights and valuable tips on navigating dementia care.
Speaker 2:Hi, I'm Daphne. This season, we're diving even deeper into topics that matter, from caregiver resilience to meaningful engagement. Plus, we'll have a fantastic lineup of experts to share their wisdom.
Speaker 3:And I'm Ashley At Person Centred Universe. We help you provide person-centered dementia care at home, work or in your community. Through this podcast, our goal is really to strive toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 1:We are also introducing a new format this season with rotating co-hosts. You'll hear from each of us as we take turns leading discussions with incredible guests, some familiar faces and some exciting new voices.
Speaker 2:So, before we begin, just a special note the information that we share in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we'd encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:So don't forget to hit that subscribe button and join us every other Thursday as we explore the many dimensions of dementia care. One conversation at a time.
Speaker 1:Welcome to Redefining Dementia, the podcast where we explore diverse perspectives and insights on dementia care. I'm Jana Jones. Today's episode is a special one. Our guest, carrie McBride, is here to share her personal journey and unique perspectives as a daughter navigating her mother's dementia diagnosis. Beyond her work as a respected real estate professional, carrie is deeply committed to living out the values her parents have instilled in her Compassion, integrity and respect for others. These values have shaped not only her career but also her approach to caregiving, as she is supporting both her mother and father through the challenges of her mother's dementia journey. Join us as Carrie shares her reflections on love resilience and the enduring lessons of caregiving.
Speaker 2:Hello, how are you, Carrie? Welcome, I'm good. Thanks, Daphne.
Speaker 4:Good to be here.
Speaker 2:Oh, thank you so much for joining us today. We are so excited to have you joining our podcast and to speak to our audience, which I know your story is going to be very powerful. Where are you actually joining us from today, geographically?
Speaker 4:I'm in Fredericton, Fredericton, New Brunswick.
Speaker 2:Okay, oh, that's awesome. So we're very excited. I'm just going to dive right in, because I think we don't want to waste a moment of having hearing your expertise and your wisdom and your story. So you are, we're very grateful that you have decided to be part of our podcast and to share your story about yourself, as well as your mom, whom you have been on a journey with as a care partner since her diagnosis of dementia been on a journey with as a care partner since her diagnosis of dementia, and so we thought that it would be powerful today for our listeners to kind of hear from somebody who is a care partner living someone with dementia, and we know that your story is going to resonate with so many people who are walking a similar journey, and so maybe what I'll do is I'll just kick it off by just getting you to kind of share, in your own words, words, a little bit about your journey and your experience, your story with your mom and that experience.
Speaker 4:Yeah, sure, thank you. Yes. So my mom, just to start with present time, she is living in long term care right now. We moved her there two years ago in January and prior to that, so probably mom's been struggling with this disease probably for about eight years, so probably six years prior to her move. You know, dad was caring for her at home and I was caring for her, sort of on the outskirts and caring for dad, caring for mom kind of thing. But yeah, it was a long and still is going to be a long journey.
Speaker 4:But to begin with, and why I was so excited to join your podcast and have a part in what you guys are trying to advocate for, is because I think it is so important for family members and for caregivers to understand the process from before it even starts, so that you're not so caught off guard, so that the emotional and mental well-being for both the person suffering with dementia as well as the caregiver can be as optimal as it can possibly be.
Speaker 4:So things I wish I had have known are the things that I really would like to share with our audience today. So back when we first started noticing signs and I think everybody sort of starts somewhat the same way that just something is different with their loved one and everybody's journey, of course, is different also. But with mom she certainly went through the angry phase. First she wasn't very interested in getting any more assessments after the first one, and things just sort of progressed from there in somewhat of a downward, negative spiral, because she also wasn't open to taking medications of any sort. So there was all of those struggles, but the thing that we always tried to do was to always find a way to reach her, because we knew that this was not mom in her full, real state of who she was. So it was always my goal to find a way to reach mom, not the person that was suffering.
Speaker 4:And it was her yeah.
Speaker 2:So sorry, go ahead. Oh, that's okay, sorry, please, you know, let me know if I'm getting ahead of myself. But so just really interesting to kind of touch on that point where you were saying you were noticing some subtle changes and you said it mainly had to do with sort of her mood and, um, that kind of type of behavior like a almost like a feelings of frustration and things yes, it was a definite personality change, yeah, yeah, um, just her being, uh, definitely more aggressive and um, just totally not her just acting, not the same caring, warm, happy person that she always was.
Speaker 2:It was yeah and where would you? Um, I guess again, please tell me if you're going, if I'm getting ahead of you, but just hearing you say that you know immediately. You kind of spoke about like the assessment and that she went for just the one. And so how do you even begin as a caregiver or a care partner? To where did you start? I guess to kind of once you realize there was changes, to kind of navigate that and like how did you approach it with, I guess, in relation to the system, or to try to figure out what is going on, and with your mom?
Speaker 4:that that was definitely a hard part and, again, part of the things I wish you know, other people know, ahead of going down this journey. Um, it's just a struggle to figure out where to start. So we did start with the family doctor and then from there the family doctor referred her to, you know, the aging specialist, and then the aging specialist made the recommendation. It went right straight downhill from there to having her driver's license taken away, and so that is where we started and that's where it progressed to. But it would have been nice to have known ahead of time that once we started with this, once we started with our family doctor, what was going to happen after that? Had we been able to have been more prepared for what that was going to trigger after? That would have been really nice, because we might have slowed the process down just to make the blows a little bit softer both on ourselves and on my mother.
Speaker 2:Yeah, it might have been, you know, different for her. Yeah, from all of your experience, to not be feeling like it was all happening, probably at the speed of light. It sounds like.
Speaker 4:That's it, and it would just seem to be like a slap in the face. Every time we turned around it was like why? Why is that happening? I wasn't expecting that to happen. I just want somebody to to look at my mom, to talk to my mom, to tell us that what we're seeing is normal or not normal or what we can do about it, rather than, you know, triggering from there's something wrong with mom to you don't have your driver's license anymore, you know kind of thing. Yeah, so it was very tumultuous.
Speaker 1:Wow.
Speaker 1:This probably, I guess, piggybacks on what we're already talking about, carrie, but based on the speed of what you're saying, your journey sort of started and you were just launched right into this experience with your mom.
Speaker 1:Your whole family was am I to understand, obviously, that you know she wasn't able to relay to you what her wishes would have been for her care once she was no longer able to make those decisions for herself. So you know, even though people living with dementia, once they're perhaps in a nursing home setting, may resist certain aspects of care, had she been able to tell you ahead of time, you know, these are my wishes, whether I resist them or not. You weren't able to have that experience with your mom and she wasn't able to relay that to you. So I'm, I guess, curious to know what sort of insights you would share with our listeners in terms of what things you would love to find, would have loved to find out from your mom, or if you had any advice for people in terms of what to share about what they want for their own care moving forward as they traverse the journey of living with dementia.
Speaker 4:Hmm, that's a really thoughtful question. Yeah, I mean, certainly it would be nice to and you've got me thinking I should, you know talk to my own family, even though you know our age is probably premature for entering this kind of disease. But it's probably never too early to start discussing if I have dementia, how I would like to be treated, how I would like to move throughout my life as the disease progresses, and whatnot. Yeah, that would have been wonderful to know for a month for sure. I mean, she was so in denial about the disease from day one that I'm not sure I don't know. That's a really good question. I don't know that she would have said anything because she was just in denial from day one and she still is. She still has never admitted that she has dementia, she still thinks that she's completely normal. So I don't know. I'm sorry, I don't know how to answer your question.
Speaker 1:Your situation is the experience for many people who are in your situation. Wouldn't you say Daphne?
Speaker 2:Yeah, well, that's what I was going to say. It speaks to just in general I guess, without a diagnosis of dementia people walking around in the world, just the stigma that exists, right and how. That's a stigma that exists right and how. That's a really scary word, right, and so it's understandable that if, especially if, you were feeling like it was just one kind of jolt after the next, that someone would probably be feeling like they have to like a bit of fight or flight, right, like yeah, yeah, sorry.
Speaker 2:I mean I want to let you kind of go back to the journey of your story. So I'm curious, because you were talking about the early, the early part of your journey and then so I guess, what? So what was kind of the trajectory of? Because you mentioned, by starting off saying your mom is currently a resident in long-term care, but sort of how was the part of the journey? Like, what was the time frame? Was there a period, I guess, where, as you were navigating through that system, where you were supporting your mom at home and you mentioned your father also as a care partner? It sounds like there was, and I'd love to know a little more about that as well. But also, please feel free to go in any direction, because we're we just love hearing everything, anything about your story.
Speaker 4:Yeah, so no, I did not live at home with mom at any point of her, her care. And you know the beginning stages, probably the first couple years where we just started noticing the personality changes and and just her sort of being more forgetful and hiding things and thinking that we stole things. That probably went on for, I'm going to say, three years. But she was still able and welcoming for myself to come into the home, her, her home. But sort of after that she moved into the next another stage whereby she knew who. She knew that I was her daughter when I was in front of her. But if I was speaking to her on the phone or if I would call and dad said you want to talk to Carrie, she would immediately say no, she. She thought that I was just an evil person that was out to get her. So that probably went on for about two years, that whole stage. So that was a very trying stage for for my father too, because at that point I wasn't really allowed to go home and I wanted to because I knew that once I got in front of mom that it would be okay. I was scared that it wouldn't be. But I knew, I just knew it would be, but dad was too scared that it wouldn't be, and he was the one that had to live at home with the anger that would ensue that happening. So that was a really long, hard two years. But going back to the comment that I made earlier that it was always my goal to always reach her, there was every time I would call home, I would think of something that I could say that would make mom come to the phone, to make her speak with me, to make her realize who I was and to bring her back. And I had shared this with Jana, but I would love to share it with you the one time that I'm most victorious about we were.
Speaker 4:I was away, actually in Banff, you know, very far away from New Brunswick, and she had called me, left me a voicemail saying I know you stole my iPad and you have exactly one hour to bring it back here, and so I mean, there was no physical way that I could have possibly done that, but I was like she's really in a state right now. What am I going to say this time to bring her around to, to get her back? So we had gone to one of the little shops in downtown Banff and it was full of like singing bowls and little spiritual you know stones and things like that that mom was very into. She, she got into Reiki. As she got into, as her disease progressed, she actually uh, started doing Reiki and and really um, really felt comfortable, um, in that space.
Speaker 4:So, anyways, the shop I went into had all these singing bowls and whatnot. So I was like I'm gonna buy a singing bowl and I'm gonna use that as bait to get mom to talk to me. So I did so. When I called her back I knew she was still angry about me stealing her iPad. I said to dad. I said dad, just tell mom that I bought a singing bowl. And so he did. And she came to the phone immediately she just she.
Speaker 4:She came to the phone and she was like excited to talk to me, like I was the best thing since sliced bread, like you know. So it's, it's uh, and I've never forgotten that, because that instilled in me that no matter how you know deep this disease gets into her brain, I'm always going to find a way to reach her. It's there, it's.
Speaker 2:You just have to dig and find it yeah, yeah and keep trying, and keep trying, yeah, and that's amazing, that's a wonderful. Thank you for sharing that story yeah, you're welcome.
Speaker 2:It's, you know, the idea that, um, again, it's people with dementia are in you know they're walking their journey and for us, to you know they're walking their journey and for us, to you know, it's our, I guess, let's say it's our job. But it's that our, it's, yeah, I guess our job to you know, to never give up, to continually be trying to meet them where they are right, and you know it's us that will adjust to kind of the approach, because oftentimes individuals who are, you know, walking that journey with dementia, they can't right or they, you know. So that's, that's amazing and it's very insightful that you took that approach and you know, having.
Speaker 2:It sounds like all of you were kind of helicoptered into this situation and and really just trying to out, um, how to do the best you can with what you know, limited resources that you had right so that's really wise and so my um, my question as well around. So the reiki, that's really interesting and that was something that your mom had not done like previously.
Speaker 4:It was a new interest, it was a new interest that she started, maybe a little bit before we started seeing the signs, but right around the same time. But you know what she got all of her certifications. She was a Reiki master and so I don't know, I guess she couldn't have been too too far into the disease to have been able to gone through such like. I mean she had to study and write exams and you know, to be able to get those certifications. So but I think, yeah, I think it really carried her through and enabled to be such a positive spirit to bring her to where she is now. I think it really did help her her.
Speaker 1:I think I remember you telling me in one of our previous conversations that you have incorporated some of those Reiki objects and things like that into her room currently where she lives. Is that right?
Speaker 4:Yes, so they have the shadow box outside their door and it's just used to put items, you know, that really reflect the true personality of their room. And so, yes, I have some of her favorite crystals in that wall or in that shadow box and some of the angel figurines that she had, and a miniature singing bowl in there too. Yes, yes.
Speaker 2:That's beautiful. And how long has your mom been living in long-term care? That's beautiful.
Speaker 4:And how long has your mom been living in long-term care? So it was two years in January, so two and a half years, okay, yes, and so what is?
Speaker 2:do you want to tell us a little bit about what life is like today with with that part of the journey that you're on?
Speaker 4:Sure it's um, it's nice, it's taken this as a man. I mean, they had the marriage that everybody loves. You know, it's like the fairy tale movie of their marriage, I mean. And so he's finally figured out how to live alone, how to live without mom, and he's figured out how many times to go visit her, so that both his conscience is clear and so that she isn't missing him, and how many times I go and when other family members go.
Speaker 4:So currently we kind of are on a cycle where Mondays we don't go because it's hair day. So that's a big day. You know, she's getting her hair done, she's well looked after, and so he goes the other five days. My aunt goes one day and I go one day a week as well, and sometimes dad takes her out, but usually when I go I will take her out. It's it's been my mission also to make sure that she doesn't live the rest of her life in that facility and we're so fortunate that she's still physically able to walk on her own and she just follows her directions very well.
Speaker 4:We just say, mom, we're going out for ice cream. Okay, dear, you know, up she goes and off we go, and so we go. And it's funny the things that she does still remember. Because just last week I took her out and I wasn't planning to take her for ice cream. I was planning to just take her to a house that I have in Woodstock but we drove past Dairy Delight and as we drove by she said well, we could go for ice cream so I whipped her around and in we went for ice cream oh, that's so.
Speaker 2:I love that and you're, you're making me I have so many thoughts that are happening at the same time, just when I feel so lucky to be talking with you and cause you're just such a, you're sharing so many just day-to-day little moments of wisdom. And so one thing that you said a minute ago when you were speaking about the two years or, like you know, the taking time to get you know in into the routine for you and your dad, and that's something that I think often gets overlooked in relation to care partners, right.
Speaker 2:So, the care partners who are caring for a loved one at home. And then you know there's all the I guess, for lack of a better word sometimes it's chaos and you know trying to get into a routine. And you know sometimes it's chaos and you know trying to get into a routine, and you know defining those roles in the new normal when someone's living at home early on in the journey. And then the piece of actually moving into long-term care and the grief or the you know the lack of, or the you know intense change, I guess, with kind of giving up now aspects of that care role that you had just established, right, and the you know kind of handing over. And you know there are still ways to be involved.
Speaker 2:And you mentioned already you know you've mentioned a bunch, right, you've talked about how, personalizing her room and you know, making sure you know that she's getting out and that she's having, you know, opportunities to leave the home. But I guess just that, I guess my comment or my thought is just to say that you know you really touched on something there like that it's that's a piece that really should not be. When you say about families, you wanting to educate people around the different steps of the journey. That piece is a really powerful piece, right when that transition into long-term care is. Often it's a big transition and sometimes we we think of it as the for the resident or the individual, but not for the care partners.
Speaker 4:It is. It's a big thing and I think I think generationally it's going to be different for every, every situation. Also. I mean, you know my dad's in his mid-70s and that generation, you know they, typically they were only a one marriage, unlike today, you know, a lot of times we've had more than one marriage, but they, you know they were made it for life and that is.
Speaker 4:You know, how do you maneuver that? How do you prepare someone for that? Like there has to be ways, but I'm not sure it probably has been thought about that. There probably are tools that I don't know about, but I think, even just beginning to talk about it to so that that spouse knows that once this separation has happened and that's what it is, it's a separation you need to create your own tools for your mental health, for your physical health, because life is going to be different again. Like you've already spent all these years going through a catapult and it's gonna you. You're going to be thrown that way again, in a different way, and it's.
Speaker 4:I just think it's really important to to A know that ahead of time and find some way to come to grips with. These are the emotions you're going to go through and sort of ahead of time know it's just like the grief process. I mean that's very well documented. It's really quite similar to that and then, as the child, figuring out how to care for, you know how to care for. You know my dad, whose heart is broken, and you know he went through a depression, as did I. I. I mean you do. These are just normal human reactions for a parent or a spouse, or you know a family member who is going through this disease, or any disease really. But I mean, dementia is just a, it's a silo of its own Right, right.
Speaker 1:You've brought up such an important point of course in supporting those immediate family members who are also navigating that grief process. So how did you find you were able to support your dad while also going through that process yourself? Did you partake in any, I guess, support services together or individually in any way? Or how did you navigate that? And I'm sure you still are navigating it to some extent, of course?
Speaker 4:For sure. Yes, I think we both are still navigating it, but we, I think we've come to, I think we've got a fairly decent grip on it, although it's different every day. But I found a really great support group on Facebook and it a like it's a national Facebook group and that really gave me the most comfort and the most support of anything, just because there were people like me all over the world, you know, and so their stories and their advice continues to be just so invaluable because they're going through this, the same thing. And for dad, again going to the a bit of a generational comment, I don't mean to stigmatize or anything like that, but it's just, it's just a fact. You know, they like to sort of keep things secret, especially in a small town. Right, when you live in a small town, these are, these are things that you don't like to really have out there or lean on your friends. But dad actually was pretty proud of him. He did talk to his friends and he did have male friends visit with him and talk with him and there was a support group that he actually attended a couple of times. But then COVID happened, so that shut down and it never did actually start back up. Covid happened, so that shut down and it never did actually start back up.
Speaker 4:So I think he's just come to figure it out on his own and all that I could do was call him daily, you know, bring him food, visit with him, just show love. I mean, at the end of the day, there's not much else you can do. And I had a friend reach out to me just a few weeks ago who she's not a close friend. She's a high school person that I went to school with and we just are sort of connected on Facebook. But she reached out to me because she, her and her father are just going through this. They've just had to move her mom. And she said, carrie, you've shared so much on Facebook that I knew you would understand. She said, but how can I help my dad? And I was like, oh my god, the same yeah yeah so.
Speaker 4:I was glad that she felt comfortable to reach out, but I was also like you can't. There's really not much you can do for him except be there and recognize that he is going to go through this. And just, you know, like I. You know, I center all the links, all the things you can educate yourself on with regards to the disease, but really that doesn't help. That's not where we're at, you know.
Speaker 2:So yeah, it's like going through the experience and I think you know, know you've hit on something.
Speaker 2:Actually that's very powerful, maybe without meaning to, but just the fact that, because we've talked a lot about today, like as we're chatting, we're talking a lot about just the kind of you know, the stigma, or the being embarrassed or not wanting, you know, small time, like all of that, and that generation is stoic, right, and you mentioned that this person has reached out to you because of what you've shared on Facebook.
Speaker 2:So I would just say to you, I guess, just to validate you a little bit in this, is that actually think about. That's probably a very positive impact, that just in putting your story out there you may never know, but it will you know how many people it would help to kind of eradicate some of that, like the stigma that people are experiencing or the feeling of feeling like they're alone and stuff, and so just kudos to you for doing that, because, because that's that's a really proactive, I guess, thing to do, or that's that's such a great story, right, and you, their journey is different than yours, of course, and your dad's and your mom's, but again that you know I'm not alone in this, right? Yeah.
Speaker 4:Yeah, everybody's journey is different with this disease, but there are, there are some things that are the same. You know, like there's a starting point and there's a midpoint, and like those things are are the same. You know, like there's a starting point and there's a midpoint and like those things are all the same. So, and I mean, I started sharing, I was terrified the first time I made a post, but I was like you know what? So many people loved my mom and we get asked about her but they don't go see her because they're probably scared. I don't know why her but they don't go see her because they're probably scared. I don't know why, but you sure find out who your friends are really fast, you know.
Speaker 4:But my thought was mom still deserves to be part of the world. People still deserve to see mom, you know. So that's why I started sharing my pictures and my videos during our visits and I did receive so many messages from her friends saying it's so nice to see your mom. I'm so glad that you shared that. They really are enjoying seeing my mom through my eyes, through, you know, my my social media stories that I do with her. So it has been impactful and I'll certainly keep doing that and, like you say, I think it's possibly hopefully impacting people that I don't even know, and I think that that's the best way for everybody to heal if there's any way to heal through this disease.
Speaker 2:Yeah, and in a way, you know I don't want to make assumptions but in a way would you say that it's probably helped you as well, 100%, and I hope that's to be able to share. Yeah, yeah, that's really cool. Again, we don't think of you know it's, we think of it as you know necessarily dealing with grief or being, you know, depression and things like coping mechanisms as kind of more formal type of counseling or medical advice or things like that. But something like that is a really wonderful outlet, you know, to create community around yourself for sure.
Speaker 2:Well, one thing that you've mentioned and it may, this may end up being a we need a whole another interview for this um in the future. But because the interesting part of your story that Jana had shared with me a little bit had to do with the experience of driving and you alluded earlier to, you know, just having that was one of the early things that you were kind of a bit shell-shocked, or you know it was. You know, because it was kind of quote unquote taken away. So you subsequently advocated for some changes to that process with the driver, like the motor vehicle department. Is that true?
Speaker 4:Yes, I did yes, yes, yes.
Speaker 4:Because, it was such a well, it was such a dehumanizing event that happened. And again, we didn't know that just by taking her to the gerontologist or the specialist I'm not sure what his actual title is but we didn't realize that that would trigger a letter to have a driver's test and then trigger a driver's test, having her license taken away. We didn't know all of that to start with. It happened. She, you know she, she went, she had her driver's test and they immediately just revoked it, and it was so demoralizing for her, and then we didn't understand why either. So I just I was thankful that I did, uh know a previous colleague of mine worked for the minister, or he was where, yeah, he was. He was working for the minister of transport at the time and um, so I had reached out to him to say, well, like what, what is this? Like, how, how can, how can this department treat people like this? It was just a slap in the face like here you go, you know we'll get doctor's orders, you're done, kind of thing. Um, there has to be a more human way to deliver this, this type of sentence.
Speaker 4:Uh, so I went online, did some research and a lot of other provinces across canada do have fantastic programs. Um, there's one in in ontario I think it's Ottawa actually that has a whole um, a whole brochure or a whole um like little online session with regards to driving with dementia or what happens after you lose your license with dementia. And so I sent those links to him to say couldn't we look at doing something like this, like it's already been done in other, in other provinces? Doesn't look like we have to reinvent the wheel. Um, and this whole experience is it's not acceptable.
Speaker 4:So anyways, long story short, they did. They changed the um, the verbiage of the letter um that you get, and they did change it to say that you can have that your license has been temporarily suspended, but you have a different class license, so you're still allowed to drive and you may be allowed to come back and get retested and try and get your license back. So it does leave them with a bit of hope instead of leaving them with you're done, your life's over, you can't drive anymore anymore. That's it. I think there could be something better, but that's where they're at.
Speaker 2:Wow, that's amazing, and so you advocate. Yeah, so it's a simple matter of like. It's like a temporary uh condition or something on the license. Is that what? It is yeah, kind of like um, when people get their um, like when they have their beginner, their driver's permit, that they have to drive with other people, is that? Exactly yes okay wow really, that's really actually quite um awesome that you did that well, thank you.
Speaker 4:It was just to me. It was just like this this isn't right. How do I fix it? I can't, I can't imagine this is true. Like, is this really how our province like works? Like is this really how they treat people? It just wasn't acceptable. So I just had to a find out that the procedure was done correctly. That was my, that was my first sort of thought, like, well, did this happen right? Like, did somebody get something wrong? So that's where I started with it. And then, when I found out, no, that's, that's the way it is, I was like well, that's not okay yeah, and did your mom end up then?
Speaker 2:did your mom then continue to drive, or was it after that had happened, like long after?
Speaker 4:she didn't. We did have a. They did allow her a chance to come back and rewrite the test, but she wasn't able to. She wasn't at that point, she wasn't able to study. She had the book and she kept looking at it and she kept flipping through it, but it wasn't really making sense to her. Um, she didn't, she didn't say that, but that's what we could see. So she always thought and she always intended to go write the test so she could get her license back. But it never did happen. And still to this day, if we see a cute car downtown she'll say I think I'd like to have that car.
Speaker 2:You know she still would like to drive. Yes, she still is able to articulate, you know, interests and things that quality of life, like the ice cream.
Speaker 4:She is yeah, yeah so that's wonderful, my goodness.
Speaker 2:So I could, literally I think we could probably both talk to you all day and I think Jana probably will have one or two last kind of questions that she wants to ask, probably will have a one or two last kind of questions that she wants to ask.
Speaker 2:But what I guess, before we sort of move into a different like concluding our interview, is there anything?
Speaker 2:So I guess, from my perspective, what I have heard from you today is that you know, really you are a daughter who found herself in a situation of needing to support both parents very difficult, life-changing, you know, diagnosis of dementia and then a caregiving situation, and so it sounds like you have really strived to approach that in the way that is. You know you're that you were a strong advocate every step of the way and that's coming through. So I, you know, I just want to say to you good job, really good job, thank you, yeah, and I guess, before we I'm getting emotional now, so sorry I, I, before you know, is there anything that you really would love to you know, thinking about listeners, like your friend from high school that you mentioned what's kind of, what would be kind of the more important things of your story that you would want people to take away, whether that's someone like you or someone who was walking kind of in your dad's shoes or you know. What do you want to kind of leave people with?
Speaker 2:And it can be more than one thing, it can be you know the most important kind of takeaways for people who are going through a similar type of journey.
Speaker 4:I think that, um, and I don't know, this might not be easy for everybody, but I really feel like you can't. You can never stop trying to reach them. I know that everybody is different and I'm lucky that I was able to reach mom when she was in the deepest, darkest depths, and now it's just a different phase, but it's the neuroscience of the brain, I mean. So there has to be a way. I know that you can, and so I think that's really what I want to tell people, and it's. It's hard, because by times you're so angry with them and so frustrated and you just don't even want anything to do with them because they've been so mean to you. But if you can pull yourself out of that and just think of a way to reach them, I think that that's the biggest thing that I want people to try to do, because they're there and you, yeah, you keep finding ways to keep trying.
Speaker 2:Yeah, oh, thank you, and I I have a couple. I mean we'll probably have to, you know, chat with you a little bit more offline, but there's a few few previous episodes of our podcast that you might find it like. Specifically the one around music, you know might be a really interesting thing If you haven't, or maybe you have tried music, but there's a lot of science around how music can really help with that.
Speaker 4:Yeah, she loves music and she dances. Man, she can dance.
Speaker 2:That's amazing. Yeah Well, thank you. And yeah, Jana, I look like you're itching to jump in Only if you've asked all your questions for the time being, Daphne. Well, I will always want to ask more questions.
Speaker 1:As Daphne said, I really do feel like we could talk to you all day because I still have questions swirling in my mind about you know the things that you're able to do with and for your mom. Now I know that you have, you know, really special out you're able to do with her for your mom now I know that you have, you know, really special outings with her, as you've said, and different ways of navigating, navigating those visits. So I don't know if you wanted to share a little bit more about that before we have our concluding question with you or not.
Speaker 4:Sure, yes, I like I say I do try to take her out because I do live like an hour away, which isn't really far, but it's a day out of the week certainly that I have to take to to go there. So I always certainly make a plan, but it's you have to really plan it because, living in long term care, there's there's lunchtime and then there's activity time and you can't interrupt those things. So you know, if I'm not there before 1130, then I have to wait until 130. But I have to get there before two because otherwise activity starts. So it's just kind of fun to figure out you know which interval I'm going to go, and sometimes I just stay and do the activity with her, whether it's a bingo, which she can't really play, but she loves to sit there and point at the numbers and it's. She's happy being with all those people. So that's fun. But yeah, so usually I will take her to lunch. I'll either pick up maybe a sub or I'll bring lunch and and I'll make it for her at my house and have dad over.
Speaker 4:We often do weekend dinners like a Sunday dinner just to normalize things, because we can't have family dinners anymore in the nursing home. So part of you know owning this home that I purchased in that town so that we could have purchased in that town so that we could have these normal types of activities, it has really been a saving grace, because we can just watch TV, we can just hang out, you know, I can do laundry and she can help me fold the towels, and then we have family dinner, which is something that you know, really we hadn't been able to have even before she moved to the nursing home because she was in that state of not allowing it. So, yeah, it's just been. It's been a whole different world since we moved her to long term care and it was not something that we knew whether it was going to be good or bad, but it really, honestly, has been good. It's been good for her and it's been it's been good for us.
Speaker 2:So it sounds like it's reached a point of, would I say, peaceful.
Speaker 4:Kind of no, I wouldn't go that far. I don't know that it will ever be peaceful. Well, maybe for her. I, I feel like she's peaceful. Yes, yes, yeah, and you? So that could be true navigating like you're.
Speaker 2:You're kind of still navigating all of the relationships, probably in relation to long-term care you know, the care team and the service providers and all of that.
Speaker 4:Yeah, I mean, that's a whole other episode, right, like, but but we've certainly made friends there, you know, like between the caregivers that work there and the other residents there's definitely like mom's at the end of the hallway and mom thinks that she's there to work, like this is her, this, this, this, this is her life. She that she thinks she's at work she was a librarian at an elementary school and so she thinks that that's what she's doing. She thinks that all the other residents are her students, so she, we. It takes quite a while to get from her room to outside because she stops at everybody that's in the hallway along the way and puts her hand on their shoulder and wh whisper something to them or helps them do something, or just make sure they're okay because we're leaving.
Speaker 2:So Incorporating story though most simple ways, right Like 100% like that's how she's rationalized it.
Speaker 4:Yeah, so that's normalized it, I guess.
Speaker 2:I guess, I don't know yeah, but that's a different way. That's another example of um reaching her right, correcting her. You're just, that's her, that is her reality and you know. That's a way that you're bringing out her.
Speaker 4:She's checking in on her people oh, she is and she's just, she's helping them, you know, because she just radiates love, and so many of the residents don't ever even get visitors and so I think, as painful as this disease is there, I think that that's the light and she's bringing light and love to other people that don't get it from anywhere else and probably can't even relate to anybody else. They have their own verbiage. It's very interesting to watch.
Speaker 1:Well, I appreciate you sharing that aspect of your story. Carrie, and just the many ways that you need to try and reach the essence of her and honor her, her life. And if I could, I'd love to ask you our concluding question, which is something that we ask everyone that we interview, if that's okay. So that question is what is your hope for the future for people affected by dementia?
Speaker 4:My hope is that more people have conversations like this, openly and freely, and that every community, every province, every country, every neighborhood has the tools and resources to know the trigger system, to know that, when this starts, this is going to happen, because, as unique as everybody's um journey is, those parts are not unique. There's always something that triggers the next thing and and those are those are really quite general and I I really that's my biggest thing I want everybody to know that and to not stop talking about it and to not stop reaching their loved ones.
Speaker 2:Wow, thank you so much, carrie. You know I'm sure that when we are finished, you know, with our interview and as we're getting the episode ready and stuff, we're probably going to have so many more thoughts and things we wish that we would have asked. So, you never know, maybe we'll, if we could maybe be so selfish to say we may have you back again someday. But yeah, your story is very amazing and it's it's so important, I think, for our guests to be able to hear just the everyday lived experience of individuals who are traveling this path. And, like you say, there's a lot of similarities, you know, in terms of the, you know, steps along the journey. But then everyone's life is, you know, different, so the journey also is as unique as the individuals who are experiencing it. But certainly I think there were so many wonderful, you know, know, wisdom, takeaways from what you've been saying, but also practical as well. Thank you, thank you. I just will say thank you for sharing your story my pleasure.
Speaker 4:Thank you for having me, and if I've helped even one person that might listen to this, then that's. That's the the most we can hope for, right, or the least we can hope for. Like it's. Yeah, we just have to keep sharing and thank you. We can hope for Like it's. Yeah, we just have to keep sharing and thank you guys for what you're doing. It's just phenomenal. We need to have more people like you and more people-centered universes right Around the world, because this is it's not getting better, right, it's only increasing in the amount of people that it's affecting.
Speaker 2:Well, you'll have to. Please do us a favor if they like hugs, and give your mom and dad a hug from us.
Speaker 4:Oh yes. Yes, Mom is a hugger. You're not getting out of the room without hugging her. Yeah, I will Thank you.
Speaker 1:As we close today's episode, I want to take a moment to thank Carrie once again for sharing her heartfelt journey with us.
Speaker 1:Her story reminds us that the dementia journey, while often filled with raw and challenging moments, also holds opportunities for deep love, connection and personal growth. Carrie's honesty and courage in sharing both the struggles and the silver linings of her experience are a testament to the resilience of the human spirit. To our listeners, whether you're navigating dementia with a loved one, supporting someone who is, or simply seeking to understand more about this journey, know that you're not alone. There is strength in sharing growth, in learning, and beauty in finding moments of connection amidst the challenges. Thank you for joining us on Redefining Dementia. Until next time, take care and cherish the moments that matter most. Thank you for joining us for this episode of the Redefining Dementia podcast. We hope the insights shared today leave you feeling empowered and connected, no matter where you are on the dementia journey, whether you are living with dementia or you are a care partner, a professional or an advocate. Together we can continue shifting the conversation.
Speaker 3:This season. We're grateful for the opportunity to bring you new voices and perspectives. As always, we strive to offer practical tips and heartfelt stories that resonate with your experience.
Speaker 2:A huge thank you to our incredible guests who generously share their time and knowledge with us, and to everyone behind the scenes. Our music is written and produced by Scott Holmes, and this podcast was produced by Jana Jones. Be sure to subscribe so you don't miss our upcoming episodes. And, as always, let's keep redefining dementia together.
