Understanding the Real-Life Symptoms of Dementia

In this episode of Dementia Lifeboat: Port of Call, dementia educator Laura Wayman and certified life coach Jocelyn Ives sit down with Jennifer Gilbertson to talk about what dementia symptoms can look like in real life, long before many families recognize what is happening.

Jennifer shares the early changes her family noticed in her mother: repeated stories, difficulty following familiar routines, challenges with communication, and a gradual loss of interest in activities she once loved. At first, these moments seemed small. Easy to explain away as stress, aging, or simple forgetfulness. 

But over time, the pattern became harder to ignore.

This conversation explores what many families experience during the early stages of dementia: the confusion, the denial, the overwhelming feeling of not knowing where to start, and the emotional weight that can come with realizing someone you love is changing.

We also talk about the questions caregivers often face during this stage:

• How do you recognize when something is truly wrong?
• Why can getting a diagnosis be so difficult?
• What happens when families finally hear the words “dementia diagnosis,” but are given very little guidance on what to do next?

Laura and Jocelyn discuss why understanding dementia symptoms, especially the loss of executive brain function, is so important for caregivers. When families begin to understand what is happening neurologically, it becomes easier to shift away from trying to fix or correct behaviors and instead learn how to support someone whose brain is changing.

Jennifer also shares the emotional side of caregiving: the guilt many families feel for not noticing sooner, the stress of navigating the medical system, and the relief that can come when caregivers finally gain the knowledge and support they need.

This episode reminds caregivers of something many need to hear: you did the best you could with the information you had, and you are not alone on this journey.

If you want more support while caregiving for someone with dementia symptoms, or if you believe someone in your life may be experiencing cognitive changes, we invite you to join our monthly Dementia Lifeboat: Poolside Chat, where caregivers come together to share experiences and support one another.

You can join us for FREE by registering here:
https://us02web.zoom.us/meeting/register/PRzPtXKIRf-NNdHzhSToUg

Or become a paid member of our Dementia Lifeboat Skool community for exclusive trainings, early podcast access, and a supportive community available 24/7:
https://www.skool.com/dementia-lifeboat/about

You’re not expected to have all the answers.
You’re invited to learn, manage what’s in front of you, and feel less alone as you do.

laurawayman.com/podcast

Transcript

SPEAKER_02 0:04

Hello and welcome to the Port of Call podcast. My name is Laura Wayman. I am also known as the Dementia Whisperer, an internationally renowned dementia expert. I have with me today my co-pilot, Jocelyn Ives.

SPEAKER_01 0:22

I'm Jocelyn Ives, and I've worked in the senior care industry for, gosh, over 20 years. I work for American River Healthcare, and we do one-on-one care for seniors. And then I am also a certified life coach, and I specialize in helping people navigate the care of a loved one. Very excited to be here.

SPEAKER_02 0:45

I also want to introduce our guest today, Jennifer Gilbertson. And Jennifer has benefited, um, and and I hope I can say greatly from both Jocelyn and I helping her, number one, become dementiaware, her family, and we're gonna tell a little bit about her story and on this dementia journey. So she has joined us on the podcast today, but I want to talk about, before we get to Jennifer, I want to talk about our topic today for the podcast and why it is so um wonderful that Jennifer can be here because it's all about understanding the real life challenges of dementia symptoms. You know, we've all been taught some very, very fake news. I want to call it fake news because it really is, about what dementia actually is, which doesn't help us when we're suddenly cast onto the high C's of dementia care. And it can come at um such, it can come as such a surprise because it um often dementia symptoms don't follow. You know, if this A happens, you'll see B or C. Because everybody is so different. If you've met one person with dementia symptoms, you've only met one person with dementia symptoms because there's so many complexities when it comes to loss of executive brain function. You know, dementia profoundly influences a person's ability to handle everyday tasks. And these kinds of tasks that are um were simple and on autopilot. It can gradually diminish independence. It can come in in the core of impairment in thinking and communication and motor skills. People often don't realize that physical um dementia symptoms in the way of loss of balance and coordination can appear. Um, you know, individuals living with dementia symptoms, they often find it challenging to perform fundamental activities, even such as fundamental activities that we've done all our life, like eating or dressing or bathing and toileting, which is is uh brings about such a stigma because of the embarrassment of not being able to manage that. So then there's all these complex emotions that come up. And you know, as the disease or illness, as as it um progresses, even routine household tasks like managing finances or or taking medications or organizing appointments, even that can become difficult. And it can start out so abstract and then progress to such concrete kinds of losses. So we're gonna talk a lot about how how do we um how do we take care of that that compromise? How do we how do we learn to recognize it and then understand it or become dementia-aware? You know, caring for a loved one or even a patient or resident or client with dementia symptoms can be very, very, very overwhelming. So what I'd like to do is talk about how together Jocelyn and I, our approaches remind us that exceptional caregiving has to start with this awareness. It has to be an awareness of the condition, what's happening, an awareness of the person, and an awareness of oneself. And um to really understand dementia awareness provides us that knowledge to care effectively, to make decisions in a beneficial way for that loved one, which we'll talk about how that feels. And how focused life coaching that that um that Jocelyn is bringing to us um is just that, like I said, that bookend, that that awareness of the condition, the awareness of of the complexities of the emotional journey. So I would like um Jocelyn to to kind of uh tag on to that because um, you know, it it is overwhelming. Let's start with that overwhelm when caregivers really that the family members really start to see these challenges. What are they feeling, Jocelyn? What's going on?

SPEAKER_01 5:53

Well, I think, first of all, I think it takes a while for us to even notice it because we tend to um like have you ever gone somewhere and you get there and you look in the mirror and you're like, I cannot believe I've been walking around with my hair looking like this. But the fact is, most people have not noticed your hair at all because they're busy thinking about them and how they look. And so it takes a while as a family member to even notice that there's a pattern. Um, we we tend to write things off as a oh, one off, so-and-so was tired, oh, I didn't even notice she did that, things like that. So it takes a while, but when you start recognizing a pattern, and then possibly you've gone now and actually gotten a diagnosis or not, but when you really recognize a pattern that overwhelm, it's like someone asks you to solve world peace, it's just too much for your brain. There's just you have no idea where to start, what to do, who to even ask about it. You can't really ask the person typically because their answer 95% of the time is gonna be, I'm just fine. What are you talking about? I don't know what you're talking about. And we don't want to offend anyone. Um, often if it is someone who has a spouse, even if you reach out and ask the spouse about it, they've been covering, if you will, they've been filling in the gaps for their loved one almost to the point where they don't even notice it anymore that they're doing it. It becomes very natural. So when you really start to realize there is a problem, that feeling of overwhelm is excruciating, really, because what happens is when we get into overwhelm, we panic and we don't, we it almost paralyzes us. It's like now we don't know what to do, and when we tell ourselves, I don't know, I don't know, our brain goes, Well, good, we don't have to think about it right now because we don't know, right? We do nothing to some degree because we are so overwhelmed. So I think it's just very common to feel that way, and really step one is to just recognize I'm overwhelming myself with the sentences that I'm thinking. Things like, oh no, I don't know what to do, I don't know where to start, I don't know, I don't know. But the truth is there's answers out there, and if we can just slow it down and realize I'm overwhelming myself. Actually, I can just take it one step at a time. And this feeling, this overwhelm is actually not helping me get the result I want, which is to find out what's really happening and then start helping this person I love.

SPEAKER_02 9:14

So, Jennifer, just tell us what um kind of symptoms did you first observe in your mom and share with us. Um, and thank you for sharing this really, really sensitive um information, but share with us what did you first see? Um, let's let's kind of go all the way back and start at the very beginning of this journey.

SPEAKER_03 9:37

Absolutely. Um, so interestingly enough, my sister I think was the first person to really put together some observations and patterns and outside family members. My dad didn't really seem to pick up these patterns until uh mom's deficits became more severe. Um, so early on, signs that were observed were um mom was repeating herself. Um, I experienced this. I used to call my mom every day after work on my drive home, and she would repeat her stories from the previous day. I would ask her what she did that day, and gosh, she sure did a lot of grocery shopping and laundry every day. And I I kind of took it as, you know, she's retired, she might forget, you know, Monday from Thursday, and you know, she is getting older but also young. Um, you know, she also didn't have a lot of um people to talk to outside of my sister, me and my dad, and so she might just be repeating stories amongst all of us. Um other early signs that we saw were um my family plays this card game and we've played it for years. Um, and my mom was starting to show signs of not being able to follow how to properly play the game and follow the rules correctly. And typically when we would say something to her, she would just say, Oh, I'm just tired. Um she developed a harder time following recipes, reading recipes, doing the correct measurements, um, started to need more assistance or a watchful eye to make sure we're following those recipes correctly. Um she one thing that I remember that was a big deal at the time was um she was washing dishes by hand but without soap. And so there was this whole conversation of well, what are you doing? You should be using soap to wash the dishes correctly. You're not doing it right. And a lot of it of her response was too tired or she'd get kind of offended and not pleased with us criticizing her. Um you know, of course, her her her um symptoms and the way that they were um shown changed a lot over time. My mom was um officially diagnosed in early 2022. Um, some of these symptoms and signs we started observing in 2020, but we're kind of pushing them off. Everybody in the family had different levels of observation of it and understanding of what it might mean, or maybe even lack of wanting to accept it. I think for myself, I had a large sense of denial. Which is interesting because both of my grandmothers also had dementia or Alzheimer's. So we're we weren't new to this disease, but the presentation in my mom is significantly different than what we've observed in the past.

SPEAKER_02 12:54

That's the tripping point because everyone has different symptoms. There's thousands and thousands of opportunities to lose executive function, just like you know, I was giving this small list of some that often go unrecognized, but there's thousands more. And the the progress is so different. You know, your mom was a little bit younger. Um, and do you mind sharing how old she was?

SPEAKER_03 13:22

Yeah, my mom just turned 65. She was diagnosed when she was 61, yeah.

SPEAKER_02 13:29

Yeah. 50, 61. Yeah, and usually we don't even start thinking about that. You know, statistics say when you reach the one full age of 65, you have a 50% chance of having some cause of dementia symptoms. But generally speaking, that starting point is like we're not really gonna see any kind of real red flags for three, four, five years from that. So we're seeing much more of uh the progression in 70, in 75, in 80, because it usually is a slow progression. So think about she starts showing that at 61. She probably started having this kind of loss going on in her 50s. So we're still seeing um um, you know, it this slow progression happening, but the loss was already there years before. That's what is so tricky about dementia symptoms. And like you talked about, you know, um our healthy brain is gonna protect us from that D-word denial. And so, Johnson, you want to talk a little bit about denial and how that that comes up and and how our brain is protecting us, even though, like you said, family members are seeing this, you all are seeing this, but that emotion denial and and why we have that actually.

SPEAKER_01 14:56

Yes, it's so common, and it is because your brain is tasked with three things it is wanting to avoid pain, seek pleasure, and conserve energy. So something as overwhelming and scary as someone you love having some sort of neurological or cognitive impairment. We all know enough about dementia to know it's progressive and it's scary. And so your brain doesn't want to go there, it knows that's gonna be painful. We should not engage in that sort of thinking, and so it really is a way that your brain is just trying to protect you, and so what happens is we tell ourselves, no, no, I think they're fine, and your brain always wants your thoughts to be true because if you're right, if your thoughts are right, you have a much higher chance of surviving. So, what happens is you decide, no, I think they're fine, they're fine, and your brain wants that to be true, so it starts gathering evidence. And as we know, dementia is here and there. Sometimes they are fine, and you're like, see, she's fine, she made that recipe fine, and see, she got here on time, she remembered, you start gathering evidence, and things that are off, things that she is not able to do, we kind of filter those out or we chalk them up to well, she's getting older and she's retired, right? And so we start gathering evidence to prove it true and kind of filter out things that do not fit our storyline. And it's denial, and it's it's absolutely okay. It is there because your brain's trying to protect you. So I I sometimes I have people tell me, I feel guilty that I was kind of not paying attention to it, but that's just because you're a human with a human brain that was trying to protect you.

SPEAKER_02 17:11

Yeah. And what I hear from family members often is, you know, we saw it, but we just decided, oh, we're just gonna go ahead with our life and do the same kinds of things. And and I bet that's what was happening is you all were trying to live your life, but the more um normal you tried to give her, the more it started to raise its head, right?

SPEAKER_03 17:36

Yeah, it really um hit a head when we started noticing mom having some language and communication issues, pulling the right words in in the middle of a sentence, or losing her train of thought, um, having challenges when we have family over and there's multiple conversations, she couldn't keep up with it. Um, she would get overstimulated at restaurants or in loud areas. Um and one thing that was really odd that I never would have expected um was she had a lot of apathy, she had a lot of hobbies she used to be interested in, and just over time, but it felt all of a sudden to us that she wasn't interested in that anymore. And for various reasons, it was becoming too hard for her and we didn't know. And um yeah.

SPEAKER_02 18:32

I heard that from I hear that also from so many families. And if you think about the fact that um how frustrating it would feel if you were um you were a great cook and you would get in the kitchen and it just came, this task just came so easy to you. But you go in the kitchen and all of a sudden there's huge gaps in that process. And so you begin to struggle, but you really don't know why you're struggling. It just would be um that extreme annoyance and frustration. And apathy is such a good word because what is our brain doing? You know, Jocelyn was just talking about that. Our brain does this these three things, and one of it is is um conserve energy because it keeps us alive. So when we're we're feeling a lot of pain, what is our brain gonna do? It's gonna say, hey, wait, I need to rest. I, you know, uh, this is too much for me. So that apathy takes over in her brain, even though she no longer has that healthy brain, her um uh affected brain um it is still trying to do what it tries what it's always done to keep her alive. Absolutely. Isn't that interesting? Connection that it's so important for us to understand because even though she was losing this executive brain function, her feelings and emotions were still there. That's so important for us to learn in this whole dementia awareness because that's the key to connecting with her, no matter how much cognitive function she loses. But that's also why we need to learn from someone like Jocelyn about understanding our own emotions so that we can speak clearly in that dementia aware emotional language to connect with them, right?

SPEAKER_01 20:36

I think it happens for the person as well that is having cognitive impairment denial. Because, yeah, let's say they love to cook and now it was getting hard and there were gaps, and so it's much less scary for them to say, I just don't like it anymore, than to say, I can't do it. So they do become apathetic with things that they did really, really enjoy, and they really genuinely just decide it's just because I don't like it anymore. And again, that denial for them is a way for the their brain to protect them from the pain of what that actually means if they can't do it. That feels way too scary, so we'll just not like it anymore. That's less scary, right?

SPEAKER_02 21:26

So and it just doesn't feel good, and we our brain doesn't like it when we don't feel good, right?

SPEAKER_03 21:33

Not at all. It makes sense. My my mom used to, she was like our family historian. She did our she did Ancestry.com, she would scan old family photos, and she didn't finish the task. But I remember once she was diagnosed and we were trying to encourage her to do things to keep her brain active and find things to bring her joy throughout the day. We were trying to encourage her to get back to those tasks. And she was too afraid of screwing it up or messing it up. And technology became a huge fear for her.

SPEAKER_02 22:08

And it's nice because we we as caregivers, we want to stop it, fix it, or change it. But when we try and do that, um, we we make it worse for them because they can't process that information and it makes them uncomfortable. But we want to give it back to them. But the more we try and give it back to them, the worse it makes it, right?

SPEAKER_01 22:29

Yeah. And and it it makes perfect sense, right? She she wasn't actually afraid of like physically breaking the computer or she was afraid of how she would feel if she couldn't do it, right? Because we know the feelings remain. So she, you're right. I could see that happening where she didn't want to do it anymore because she knew if she couldn't, she'd have to feel that feeling and she was avoiding it, and which makes sense. Yeah.

SPEAKER_02 23:02

Yeah. So okay, your family's, you know, really starting there, there's this um lifting of this veil. So you're starting to come out from underneath this denial veil that it feels kind of safe. So, where'd you go for help at first, Jennifer? And tell me how well that worked for you.

SPEAKER_03 23:23

So ironically, we I again I don't it's it's hard to know to think back to all of our different mindsets of it. I think I definitely was still in the denial phase of she's fine, just some weird things as she's aging. Um, we didn't really act on any of it until um my dad's sister and her husband came to him with some observations. But also there was a day where my mom was going to leave to run errands and accidentally hit my car. Not a lot of damage, really no damage, but she came back inside and was worried. And so my mom is actually the one that prompted us to go to her doctor um and talk to them about what was going on. And unfortunately, the first um, fortunately, the first appointment with her doctor was a video um appointment. Um, you know, we're still during the pandemic, I guess, at that time. Um, and we were talking about a lot of her apathy and like withdrawal from things. Um, and the doctor really felt like, well, she probably just needs counseling. And so it took us to push harder, and we ended up switching to a different doctor to better advocate for my mom and go to that doctor and discuss with him the things that we were observing and what she's feeling, and um, really had to encourage that doctor to have her come in. And I believe they did a MOCA test that first time, which is based on memory, and she didn't do great. Um, but there are so many other things outside of memory that was really impacting her that that would never assess. Um from that doctor, we were actually referred to neurology, um, where they did some MRI scans and they did a more comprehensive neurological um exam with like questioning and like a paper test. Um and ultimately she was diagnosed um with primary progressive aphasia or posterior cortical atrophy. Um, but it really felt like we were just handed here's this diagnosis, good luck. There's no cure, here's a medication that might help slow progression, but we don't know. Um, and gosh, we were on that journey from early 2022 until fall of 24, where my dad had found a um holistic doctor in our area that was working with other doctors um on lifestyle changes and things that could help slow progression. Um so we had explored that for some time. Um, unfortunately, I do think we caught it too late with my mom because of just kind of progressing with our lives and just kind of and not really being aware of really deep down what you were actually seeing.

SPEAKER_02 26:38

No, yeah. That I mean that dementia awareness, that recognizing this early and recognizing what it really is, um, that is the that is the the crux of why I believe everyone should be dementia aware. You know, there are more progressive physicians that I'm really starting to kind of get excited about. But, you know, they're saying that that in the past these families went to a physician and said, well, you know, she has apathy and she's struggling with this, this, and this. And they diagnosed just like what you're talking about. They said, well, she's depressed. Well, yeah, she's feeling depressed because she's losing executive function, and her brain is very sad about that. She is depressed. She's depressed. Yeah, that's just a symptom.

SPEAKER_01 27:34

Yeah.

SPEAKER_02 27:34

So, you know, you go to even the wonderful doctor that you went to that was more holistic. What she was telling you, she's gonna help you with this, try and slow down the symptoms, but she doesn't have anything in her fingertips to stop it or prevent it or cure it. And that's where we are. That is the place where we are so frustrated, right?

SPEAKER_03 28:00

Yes. Yes, yeah, because we want to fix it. We want her to be better, we want her to be herself again. And unfortunately, it is a disease outside of our control. And I think one thing when my family met with you, Laura, that really resonated was you have to think for her. Um, her thinker is broken. She doesn't, my mom would say to my dad a lot over the years, I don't know what I should be doing. What am I supposed to do today? Um, and so really advocating for them and thinking for them and making decisions for them is really helpful as I continue to progress.

SPEAKER_02 28:36

Yes. And I know that is such a um an amazing milestone to get to that point where your dementia, where you go, okay, this is horrific. I don't like it. Um, it's painful, but this is what I can do. I can think for her, I can be proactive, I can give her feelings of love and safety and security and value and comfort. I can give her moments of that. And that's why not just becoming dementia aware, but also um being around someone like Jocelyn, who is that professional that helps you to make decisions so that we can get her around people who are thinking for her. And then we can give her, we can do that. We can manage it for her. Um, it's so important that you share your story because so many people are gonna be able to relate to this, Jennifer. So many people are gonna go, yeah, I get it. When I'm doing trainings, fam, I see these light bulbs go off in these families that when I'm talking about, you know, this is a dementia symptom, and and we don't want to ignore it, and we can't stop it, fix it, or change it. But there are ways that not only can we help them manage it, with Jocelyn's help or someone like Jocelyn who understands this, we can help you take this emotional sustainability on on down the road throughout all the different um parts of this journey. Coming to Jocelyn educated, it's like gold for her because now she um she knows your dementia where.

SPEAKER_01 30:32

So, Jocelyn, you want to kind of take it from there? I do. I want to kind of circle back to something you said. You were saying, you know, unfortunately in my mom's case, we caught it late. Uh, I think you said too late, and because we really weren't paying attention to some of this, and I hear we hear that all the time. And I want to dive into that a little bit because you were supposed to notice the symptoms exactly when you did. Do you know how I know that? Because that's when you did. Right? Like I know there's probably moments where all of you think, if we would have just noticed earlier, it would have been so much better.

SPEAKER_03 31:17

But if I was more on board when others made observations, yeah.

SPEAKER_01 31:22

Right. But when you think we should have we should have caught this earlier, how do you feel?

SPEAKER_03 31:32

I felt guilty. I felt like I let her down, you know, I felt like we we failed, right? I um this is a person that we love the most.

SPEAKER_01 31:43

And what do you do in that moment when you're feeling guilty about that?

SPEAKER_03 31:50

What do you do? Normally I just feel really, really down, and I I I I can't lift myself up from it, and it can make caring for her harder too.

SPEAKER_01 32:02

Yes, thank you. That's so right. What you want in the end is to be a great daughter and to help her through this, and when you feel guilty, it's so much harder to do that, and unless we had some sort of time machine, we can't go back, right? Like everything is happening exactly the way it's supposed to, because we can't argue with reality every single time we lose, right? So there's just no upside to that, and also we don't know that it would have been better, we just made that up, but even if it would have, even if we had a magic ball, uh, you know, magic eight ball, and we could see it would have been better, you're supposed to discover it exactly this time because you're ready. Because you're ready, and here's what we know is true. You all, yourself, your sister, your dad, your mom did the very best they could with the information they had at the time. And if you could have done better, you would have. You did you were very blessed in those moments, and it was perfect.

SPEAKER_02 33:22

And just showing up and being there and and loving her, that's what we're all supposed to do. That's why my book is called A Loving Approach to Dementia Care. It's all about showing up, even when it's hard, even when we don't know why, even when we don't have all of the answers, because none of us do, but it's that is when when you're feeling that guilt, you you just gotta say, hey, I am a rock star, because even though this is hard and I don't know if I did it right, I showed up. That's doing it 100%.

SPEAKER_01 34:03

When my brain wants to tell me, oh, you did that wrong, whether it's like with my kids or any area of my life. I used to play this game where I was like back and forth. No, I didn't. I think I did it right. Yeah, I did it right. And then my brain goes, No, you did it wrong. And we just spin back and forth. Now, when my brain says, Oh, why did you say that thing to your daughter or what? That was wrong, I go, maybe, maybe it was. And I love me, and I did the best I could, which is exactly what I'm gonna keep doing, right? I'm supposed to do it wrong sometimes. You know how I know? Because I do. I'm a human. So exactly if you start to head down that road, just remember maybe, maybe we could have done it different, but we all did the best we could. And uh feeling guilty uh doesn't help me be better at doing it right now, which is all we really have, is right now, right? So it's just it's easier said than done, but you were supposed to figure it out exactly when you did.

SPEAKER_02 35:16

And you are, yeah, and it and you're so much better than you were five years ago because we can learn, right? So that feels good. I I I like that feeling. Do you like that feeling, Jennifer?

SPEAKER_03 35:31

Love that feeling, yeah. I um, you know, sometimes I I I wish we found the both of you sooner because we really came to our wits' end with a lot of daily living things that my mom needed a lot of help with. And we were managing fine, but we were just kind of pushing through and forcing our way through it and doing the best we could with her. Um, but emotionally it's challenging because we don't understand what's happening, we don't understand how to process our different feelings and um learning a lot more from Laura on how what is really happening to mom and how to better communicate with her and realizing or remembering you can't reason with somebody with dementia if you if you're getting frustrated with her for doing something she shouldn't be doing, but it's safe for her to do so. Arguing with her is not gonna help. It's gonna escalate in her, it's gonna escalate in you. And so once we were able to learn that and how to better communicate and how to meet her where she's at, or um, you know, find the silliness in some things and laugh some stuff off, we could approach her better in a more lighter way and not feel as bogged down in noticing these things that we don't want happening, but it's going to happen because guess what? She has dementia.

SPEAKER_02 37:03

Right. And we're just learning to manage it. And this is exactly the message that is so important that you're sharing with these caregivers who are listening to us, you know, that that are saying, well, um now that I understand a little bit more about what's going on, then I don't feel as guilty, right? Um, you know, I I realize, hey, um, I am doing what's needed right now. And yes, we can feel a little frustrated, of course. Um, you know, I I I wish we could have been um um helping you earlier as well, but it it has to, we have to realize that, you know, our our brains have to be ready to really um connect with this. And and um the more we understand the condition and and understand our place and what we can and can't do, the better caregivers we become. So it's it's a learning process for us as well. And thank goodness we have a healthy brain that can continue to do that to help those that are in this place where their brain can't do that any longer. So thinking for them, they have that broken thinker. So coming to that realization is is so very special. And and I wish I had, you know, those gold. You're a little bit too young, maybe, but my teachers had these sheets of gold stars that were sticky and they put them on our paper. I'd like to put about um a hundred of them on your forehead. Such an amazing caregiver. And I know that that Dawson's gonna agree with this. You came with some knowledge anyway, even to me. You've seen it in other families. So it wasn't that the door was completely closed, because we do work with those that, those that have absolutely no understanding. I've had so many um spouses come to me and say, well, you know, the doctor said that that my wife has dementia, but it hasn't turned into Alzheimer's yet. And that's so upside down and doesn't have anything to do with how I'm going to be able to help them help her manage it because they think it's it's not even there yet. So for you, I mean, think about how you were already so much of an expert, even to come here, and then how we all continue to learn together. I have to also so many, even professional caregivers who I was just on the phone with someone earlier today, and I was offering a training for their staff and in-home care company, and and I get so frustrated because this is what I hear. Oh, well, my staff's already trained, you know, I'm I'm a certified dementia specialist, and so I'm already trained. And I'll I'll ask them, I'll say, you know, I've been doing this for 30 years and I still learn something new every day. You know, I I know that my this knowledge can help you and your staff. So, you know, you came to us so open and and wanting to to learn more. And um, that is is such a special attribute for you and your family.

SPEAKER_01 40:24

It is, it is. And really, the only reason that you ever worry if you've done it well enough or if you're doing it well enough is because you have such a strong desire to do it well. If you didn't care that much about doing it well or not, that wouldn't come up for you. So that the feeling of did I do it well enough is coming from such a lovable desire to be really good at this. And that's something to be proud of.

SPEAKER_02 41:00

Absolutely. So if you had one thing you could tell another caregiver on this journey, wherever they are on this journey, what would you tell them they need? Um, how how could how could you get this across to our thousands of of listening audience? Um, why do they need to become dementia aware? Why do they need to learn what Jocelyn has to do? What would you tell them if you could just say um one little paragraph?

SPEAKER_03 41:32

I would say it is a huge stress relief to understand the disease, how to best communicate with the person experiencing the disease, and being able to process your your feelings and emotions and remembering, like for me, remembering that two things can be true at once, I can be very sad and very happy at the same time. I can be happy my mom is here with us. I can be very sad she has this disease, I can feel joy and grief at the same time, I can feel love and guilt. Um, lots of decisions throughout this disease. And as a caregiver, whether you're the the daily caregiver or support caregiver, it's hard. You experience a lot of different um conflicting emotions, and they're so hard, so hard to digest and sit with. And so having um loved ones or professionals to work through with those is so important because it can help your stress load, which will then help your ability to better care for your loved one.

SPEAKER_01 42:39

Yes, and for yourself, absolutely, absolutely. I love that the power of ant. Yes, black and white, yes, the power of ant can really shift things for people. That was beautifully said, thank you.

SPEAKER_02 42:54

Absolutely. Um, I am I am absolutely um in awe and I admire you and your family so much. Um, we would love to have you come on, there's there's lots more for you to share with us. Um, Jocelyn and I are working on a really spectacular project that that will be coming up to help as as much as we possibly can. And we are willing to um, I I like uh when I first um wrote the book and started working in this in this industry and helping families and professionals, my professor, because I have a degree in gerontology, one of my professors said, Laura, you're a pioneer in this. You know, you're really looking at this differently. And she said, but let me tell you something. How do you know a pioneer? And I said, I don't know. And she said, by the arrows in your back. And so um, I feel like Jocelyn and I, you know, we we um are really pioneers in this. We're trying to really um pull ourselves out of that must. Of unawareness and to put together these tools that are really lifesavers. So we so so appreciate you coming and saying, hey, you know, this is evidence-based, this is real, this is not voodoo, this is not someone who is trying to capitalize in any political way about um this real big challenge. Um the two of us and and now the three of us tonight, we we can help you. We can help you on this road. And it is really, really scary. Um, do you have anything else you'd like to add as we kind of close here, Jennifer? We so, so appreciate you.

SPEAKER_03 44:48

Um, I when I just think of primary caregivers and how alone they can feel. My my family is very lucky with certain life situations to have um my dad retired, my mom retired. So my dad could care for my mom, my sister and I, in parts of our lives where we don't have other uh responsibilities or commitments where we could jump in and help caregive for my mom and give my dad a break. Um I just want people to know even if you don't have the extra help that we had, you're not alone. There's so many resources out there and people that can help you. And you just have to find them.

SPEAKER_02 45:27

And we stand ready to help you find those resources and be with you and spend time with you and and um share these feelings of of love and support. And once again, um, you all are rock stars. I admire you so much. I hear these stories and and you know these caregivers continue to show up no matter how challenging it is. You you're amazing, it's it's amazing. And Jocelyn and I are on the road to to provide you with as much support and help that we possibly can.

SPEAKER_01 46:02

And I just was gonna say, I love what you said because this is a hard journey. It's a hard thing to experience in your life. But in moments, if we can zoom out, there's so much beauty that that is there. Families coming together, uh, people supporting each other. The beauty is there, and I don't ever would say that I can make this a great experience for you. That's not even what I set out to do. But if I can help you see some of the beautiful moments and help you grow through this experience, like I can't wait to meet you on the other side because you're going to be a different person. And there is a lot of good that comes out of something very hard. And I think you're an example of that.

SPEAKER_02 47:03

So absolutely. I am honored to be in your presence and for you to share this. Um, and we would like to wish everyone who's listening, um, we wish you calm seas and peaceful winds on your dementia journey. Please reach out to us. Um, we we always um give you plenty of resources. And if you wish to learn more about Jennifer's journey, um, we we'll have her back. Um, we'll continue with this because we'd really like to talk about where your mom is now and how we got there. Thank you, Jennifer. You are so, so special. Thank you for reaching out to um and being with us today. And we want to continue to learn from you as well. Our poolside chat, which is more of a support group open mic, that will be happening on March 24th. Watch, because we may need to have Jennifer back because we need to continue this journey. I know. It would be amazing if she would come and help us again. Um, thank you, everybody, sending my love to all of you who are experiencing your own personal dementia care journey. And we've got lots of things coming up in the next couple months. I think you'll be very, very pleased about.

SPEAKER_01 48:22

So thank you, all of you. Thank you so much, Jennifer. Thank you for having me. Absolutely.

SPEAKER_00 48:31

Amazing. Thanks for listening. Please like, subscribe, and leave us a review. You can also join us every fourth Tuesday for our Dementia Lifeboat Poolside chat, a supportive community for caregivers. To learn more, visit school.com forward slash dementia dash lifeboat. That's SKOL.com forward slash dementia dash lifeboat. Our poolside chats are free and open to the public every fourth Tuesday of the month. We hope to see you there.