What Does Dementia Look Like in Real Life?

In this episode of the Dementia Lifeboat Port of Call podcast, Laura Wayman and co-host Jocelyn Ives sit down with caregiver Cindy to share a deeply personal and eye-opening story.

Cindy opens up about her husband’s journey following a traumatic brain injury and the unexpected onset of dementia symptoms years later. What started as subtle personality changes quickly turned into confusion, fear, and moments that left her questioning everything she thought she knew about dementia.

This conversation goes beyond memory loss and explores what dementia actually looks like in real life—shifts in behavior, emotional responses, communication breakdowns, and the daily challenges caregivers face trying to keep their loved ones safe, calm, and supported. 

You’ll hear:

•  Why dementia is often misunderstood (even by professionals) 
•  How symptoms go far beyond memory loss 
•  What it really means to “be dementia-aware” 
•  Practical ways to communicate and reduce anxiety 
•  The emotional reality of caregiving, including grief, guilt, and identity shifts 
•  How to support a loved one while still taking care of yourself 

Laura and Jocelyn also introduce powerful tools—like focusing on feelings over facts and simplifying life to the present moment—that can completely change how caregivers approach this journey.

This episode is a reminder that you’re not alone, that there is no perfect way to do this, and that progress—not perfection—is what matters most.

laurawayman.com/podcast

Transcript

SPEAKER_03 0:04

Welcome everyone to the Dementia Lifeboat Port of Call podcast. I am Laura Weyman, an internationally renowned dementia expert known as the Dementia Whisper. And my co-pilot, Jocelyn, would you like to introduce yourself?

SPEAKER_04 0:25

Of course. I'm Jocelyn Ives, and I am a senior care professional helping families find both medical and non-medical resources. And I'm a certified life coach, and I specialize in helping people navigate the care of a senior with dementia.

SPEAKER_03 0:44

And wow, there's a lot of navigation to be had. Yes, there is. Yes, there is. And so on this particular session, we would like to talk with a caregiver. I have found an absolute delight. But I will tell you that her story is sometimes quite shocking, sometimes quite unnerving, because my mission as the dementia whisperer is to raise dementia awareness. And what does that mean? That means helping everyone understand the reality, real life dementia symptoms, to understand that dementia is not about memory loss, it's about a lot of other kinds of loss that sometimes get jumbled and go unrecognized for a very long time. But we're also going to talk about how, because there are so many organizations, medical organizations, there's health care organizations, there's assisted living, there's actually dementia care, and they don't really understand dementia, which is so unbelievable. I mean, Jocelyn, let's talk about you're a professional in this. Tell me about how shocking it is when you run across organizations that don't really know, they say that they're dementia-aware, but they're not.

SPEAKER_04 2:22

And it always surprises me, actually. It catches me off guard when I recognize how undementia aware they really are. And for example, I was in a community that has both assisted and memory care. Again, I don't love that name. I know you don't either, but um they, and I was talking about maybe doing some training for some of the um caregivers in the building, and they said, well, assisted living doesn't need that. And I was like, oh my gosh, yes, they do. Everybody needs it because everyone is going to come in contact with people in this community that have dementia. And so just things like that that are just so surprising, really, that they're working in this industry and yet don't know that much about what dementia really is, and then certainly don't know that much about how to manage the behaviors that pop up with dementia.

SPEAKER_03 3:24

And you know, even in our media, our TV, for example, I was watching a great medical show. I mean, it's really, really good. Okay. Um, it's one of my favorites right now. It's it's streaming. And I was shocked because they had a gentleman who was struggling with dementia symptoms, and they in in this course of this shot, um, this segment, they were talking in the ER, and they were talking about a nursing home, getting a nursing home or skill nursing confused with assisted living. And just like you said, you know, often when I go to train staff, I will hear that too. They'll say, oh, we don't need to train our assisted living staff. But you know, 50% of those, and that I I think is very conservative. 50% of those in assisted living have some level of dementia symptoms.

SPEAKER_04 4:28

Yes.

SPEAKER_03 4:28

And we can keep them safe and secure in assisted living if the staff is trained in dementia awareness. They can keep them living in the assisted living without having to necessarily move them to that higher level of care of memory care, which I refuse to call it because it's not memory care, it's dementia care, just like you were talking about. So, you know, with that staff training and with just training organizations, as you well know, um training organizations to train the staff to help train the family members in their home, they often together, if they're all dementia wear, you know, the in-home care, um, um, any kind of medical care, and the families, if they're all dementia wear trained, they can keep that person at home safe and secure for a longer amount of time as well. It's all about the understanding and the training and the communication.

SPEAKER_04 5:37

It is. And it makes their job easier.

SPEAKER_03 5:40

Yes.

SPEAKER_04 5:43

Exactly. It benefits them just as much as the person with dementia, sometimes more.

SPEAKER_03 5:50

Yes, yes. You, as a professional um dealing in in-home care and caregivers, you know, having that family member dementia aware trained and understanding. And we're going to talk a lot about this one in just a couple minutes when we bring our guest in. But um, when that family member understands this and can communicate with that person in on a dementia aware level, that can um help you. It's like gold, because then you're it's like the village is trained, right?

SPEAKER_04 6:24

Yes, and we're all on the same page. Yes, you know, we're not working against each other, which is then even further confusing our actual client with dementia.

SPEAKER_03 6:36

Yep, absolutely. So when we talk about dementia symptoms, let's um help anyone who's listening tonight. You know, there are many, many causes of the dementia symptoms. There's over a hundred different causes of dementia symptoms and thousands of different dementia symptoms that often go unrecognized because we've been taught to look for one and that's memory loss. But actually, dementia symptoms can come in all different sizes and shapes and perspectives and presentations. And tonight we are going to talk about um a brain trauma and how that changes someone. Because when someone has Alzheimer's disease, for example, Alzheimer's disease usually has a slow progression. Alzheimer's disease robs that person of executive function. So what we see over time is the loss of that person to be able to accomplish even simple tasks that they could accomplish in the past before Alzheimer's attacked their brain. And they begin to lose this executive function, such as the ability to maybe balance the checkbook or follow a recipe or plan a party. Um, it can be personality changes because their ability to have a filter or to understand how they've been taught and how they should act in public. That can change. Um, they can have a loss of balance and coordination, which can be physical dementia symptoms that often go unrecognized because uh a lot of times people don't associate that kind of brain function loss. They can have changes in visual perception, they can lose the ability to be able to understand the difference in color. So they can no longer um uh ascertain between blue and green. They can't see that anymore because they can't process it, or they can't process um uh depth perception. So they might trip going up or downstairs because their brain can't um really understand how deep a step actually is any longer. So there's so many other things other than memory loss that can show up. And so it is very anxiety provoking for them. So we're gonna talk a lot about that tonight. Jocelyn, tell our audience a little bit about how you see as uh a caregiver's learning this, what what they're learning, how are they feeling? What are what feelings are coming up when they begin to realize, okay, they're becoming dementia-aware. Well, what do I do now? What am I feeling?

SPEAKER_04 9:32

Well, I think as as a caregiver starts to become dementia-aware, one, they become more confident. And so that it helps them so much in their day-to-day because they they start to interact with the client in a very confident and yet kind way. So they're not second-guessing themselves all the time.

SPEAKER_03 9:54

Exactly. Yes, exactly. But it's almost moment to moment too, because you you just get good at it or you feel like today I'm doing a really good job, and then they'll they'll lose another executive brain function tomorrow, and you've got to start all over again, though, right?

SPEAKER_04 10:09

Yes. And I think again, as a caregiver becomes more dementia, where they start to realize that they their ability to be a good caregiver is not dependent on how the person with dementia reacts. Um, if person doesn't do what the caregiver wants, a lot of caregivers tend to take that as if they're not doing a good job and they withdraw. They actually stop trying as hard because they decide I'm not good at this, which is not getting us the result we want. But the way that the person with dementia ends up reacting isn't telling us about how good of a caregiver you are, it's just telling us that we need to maybe try a different approach. And good caregivers try different approaches until they understand what works. So when they become dementia aware and recognize we can't control this other person. We just need to figure out what they're feeling and then talk to those feelings. And different things are gonna work for different people and at different times. What worked yesterday might not work today, but that doesn't mean you're not a good caregiver. That means we just have to try something different. So I think that's really helpful for a caregiver.

SPEAKER_03 11:33

Well, let's start. Um, let's bring in our absolutely amazing caregiver. You all are gonna love her. I just I just love her. So um, Cindy, we'd like to bring you in. Could you just introduce yourself and give us a little summary about how you became a caregiver for your husband? So just catch us up to where we are now, if you could.

SPEAKER_01 12:00

Hi, I'm Cindy Brazzelton. And um I met Laura through our local hospital here in Glasserville, California. Um, my story, I'm new at this. I'm a I'm in my journey, my beginnings of my journey with my husband. Um, in the year 2000, he we owned a company and he had a crane and he was working on it. He was uh up in a ladder and he passed out and fell backwards and hit the back of his head. So uh he ended up at the hospital for like three weeks and he had memory problems, speech problems, balance, dizziness, but it tapered off after probably six months. Um, and the doctor said, you know, this could potentially cause problems in your later years. Well, he also has a hobby working on cars, and there were several times that he would come up home with a you know a bump on his head from working up in the on cars, and I would say, you know, you're gonna end up like a football player. You're doing all this internal damage to your head, but we joke about it. And um fast forward to last year, I started. I thought, you know, gosh, I don't know if it's age or if he's just getting to be grumpy or what, but I did see changes in his personality, and I always would go back to a head injury, but I never thought, okay, this is where we're we're starting to head down. Um a few weeks before well, we last year we were remodeling the bathroom, and I really noticed that his temperament was he had no patience, and we were trying to work together on something, and I just kept on throwing up my hands thinking, This you just cannot, I can't talk to you. And anything I would say, there'd be an argument about it. And even our contractor was like, What is going on with him? Because they could they could see that I was I was trying to, especially when you're in front of people, it's like, you know, let's tone it down a little bit here, and um and it was just it was really hurtful, it was frustrating, I was angry, I just was throwing at my hands, yeah, and that was last June. And I remember one time he he uh before we went on vacation in July, he asked me, Cindy, are you in touch with reality? And that was just a bizarre question to me. And I thought, you know, I I still didn't get it. And then we went down to visit our kids in Southern California, July 4th weekend, and I noticed that he was talking to everybody a lot. He he would carry on conversations for just like long conversations with people he didn't even know. And I kind of like try to now I can say the word redirect, I would try to pull him away from the conversation and think, these people don't want to hear all this, you know. I was, I don't know, I was just feeling like this is out of control. Well, July 4th, he came in to me and said, Are you talking about me with my daughter? Uh my daughter and I were talking, and he says, Just give me a yes or no answer. And I said, Well, if I give you that answer, I'd like to explain it. And he goes, I just want a yes or no answer. And I thought, this, and I at that time I was ready to say, just go. But he's I I said, Yes, we are talking about you. And he goes, That's it, I'm done. And he got in his truck and left me down in Southern California and drove back to Northern California, a seven-hour trip. He doesn't remember driving back. He sent me a text that was in perfect English and spelling, saying some horrible, horrible things to me about you know, bury yourself in the ground and all this. And um, I was just, I don't even know what my feelings were at that time. But I did get on a camera in our home at 3 a.m. in the morning. I just happened to wake up. I think that was a god thing. I woke up at 3 o'clock. I looked at our camera in the kitchen and I saw him standing there, and he was just, you could tell he was just lost. And he was calling my granddaughter, who's in her late 20s, and asking her, where's Nana? She's not here. And he goes, Papa, you left her down here. He goes, No, no, I didn't. How how did I get home? Where what happened? What's going on? So he didn't remember any of it. And um, so when we I came home a couple of days later, I didn't cut my trip short. I came home with my kids, and um and then and then he started acting I ended up leaving the house and went down to my daughter's who lives next door because I just didn't feel safe. And the I don't even remember what he was saying, but he was just really acting strangely, and I thought, I gotta get out of here. And we even called the sheriff's department, and he was very upset about that. We took the keys away, and then the next day he had calmed down and he said, You know, I just feel like I have electrical shocks going on in my head, and I don't know what's going on, and I'm scared. And so we took him to UC Davis, and we were in the ER, and we stayed with him, played music. Um, but like you guys have said, they at UC Davis is a trauma hospital, and we had to leave there at midnight, and it all went to hell in a handbasket. They treated him like he was a drug addict. They strapped his arms up above his head, and and then um and he was using profan profanity towards them because of the way they were treating him. He had just had a shoulder replacement, so he says, Please don't put my arm over my shoulder, but they did. So he was yelling at them, and then um he ended up in the hospital for three weeks, and they put him on lots of medication, so he was just more a zombie than anything. And um he just he to this day he still focuses on that um that this UC Davis has a dungeon where they put people and they torture him. He says, I was tortured. That was his reality, that was what he was experiencing, and um, I couldn't go see him because I had a back issue, and so my daughter would go see him, and he even told her, he goes, I know you guys are trying his thought process, it was totally irrational, and he knows that now, and he almost on a probably through two or three times a week, he'll tell me, I am so sorry for that text I wrote you. And um, so now I am right away. I started looking for they said he had frontal temporal dementia, and that's affects more the um personality and uh uh moods and stuff, and I had and he does have the other, like you said, the memory care, the memory isn't as much as his physical um balance. Um he'll be in the middle of saying something and it'll he goes, I don't even remember what I was saying, or I can't, you know, I don't know what to say. I it just went away. And I mean that happens to me sometimes too, so I don't put into that.

SPEAKER_04 19:38

What am I talking about?

SPEAKER_01 19:41

Yeah, exactly. But the sensitivity and the um the behaviors and the his gait when he walks, his balance, he's tripped a lot walking up steps and stuff, and but in the mornings, I I kind of I'm kind of bouncing back and forth. I did note I thought he was getting sundowners because then in the mornings he'd be really good, and as the afternoon went on, he had sundowners, yep. Yep, and then before this major incident in July 4th, he wasn't sleeping, he was getting up at three o'clock in the morning and going and working on the car or watching TV, so he was wasn't getting good sleep. So I think the lack of sleep ended up with this July 4th incident, and um since then he's seen a neurologist. I'm learning how to, and I'm not Laura gives me more she gives me a lot of kudos, and there's times when I do things and I'm thinking, oh, that's not a good one. I do, I get impatient because I'm he's always been a type A personality, and and to talk to him sometimes is is difficult. I mean, some of the things that he says is just like I don't even know how to respond to that. And like Laura says, you know, talk to his feelings, and sometimes it's like I don't want to talk to his feelings, I want to talk to my feelings, and so you know, I feel like I feel like there's days when I'm doing a good job and I feel accomplished at the at the end of the day, and and we've had a good day, and then there's other days where it's like I don't know how I'm gonna do this. I just I feel like I'm losing myself, I'm losing our relationship as husband and wife. Um I I feel like I'm making all the decisions, you know, to go on and when I plan something, I have to just give him what's gonna happen the next day, and I write things on a whiteboard. But if I say he wants to know, like what aren't we going to a volleyball tournament in two weeks? Yes, but we'll talk about that. You know, I write it on the calendar, but he'll get overwhelmed if we're going to do two things or three things. He'll he'll just say, I can't do that. I can't do that. And he'll get I can just see his whole body change. And I'm trying to learn how to think of course include him in things we do, but not over-stimulate or overwhelm him. And that's so easy to overwhelm him.

SPEAKER_03 22:27

And we can think linear like that, you know, Monday, Tuesday, Wednesday, Thursday. We can do that. He can only do one moment at a time. So one of the things, and we're gonna go back here in just a minute, but one of the things I I want to share with you, Cindy, is instead of having a calendar that has Monday, Tuesday, Wednesday, Thursday, I want you to have one sheet of paper. This is what I tell assisted living to do or um senior care when when there's dementia symptoms involved, that means they can only process in the moment. So, you know, in for example, in assisted living, I'll go in and they'll have a week's activities or a week's menu. And I say, those with dementia symptoms that are having trouble with that, take that away from them. And they have this, they have one sheet of paper. This is what we're doing today. And if they ask what's next Wednesday, all you do is you say, Oh, I don't have that one yet. I don't have that calendar yet. I have today's calendar. So let's just let's be present and enjoy today, because that's all they can do. You can have on your phone, you can have a calendar, but he just needs today. That's all we're gonna talk about is today. Yeah. If he asks about, is there a volleyball game next Thursday? Well, you know, I have today's, we're gonna enjoy today, and we'll look up Thursdays when we get closer, or whatever you need to say.

SPEAKER_01 24:04

And that the that's the stuff that's hard to learn because he wants to know. Yes, he wants to know what are we doing.

SPEAKER_03 24:12

He doesn't, he doesn't want to know because what happens when you give him that information?

SPEAKER_01 24:18

It makes him anxious. And he goes, I you know, that's just too much for me.

SPEAKER_03 24:22

Yeah, but that's his brain thinks he wants to know, but then his brain can't know it. So we have to be a step ahead, and we only give him the information in the moment. And even if they ask, you know, I have so many families that come to me and say, Oh, they he got so upset because I told him next week we had a doctor's appointment on Thursday at one o'clock. And then when it came Thursday, he got so mad because he said I didn't tell him. Well, you do, but there's no place in his brain to store that information. That's why they get so upset. That's why you don't give them that information because it they can't store it, and then they're frustrated with you because they think you didn't tell them.

SPEAKER_01 25:07

So even writing it on a calendar is too much. Too much.

SPEAKER_03 25:13

Yeah.

SPEAKER_01 25:14

Okay.

SPEAKER_03 25:15

Anything out there, anything out there has to stay out there. The only thing he can process is right now.

SPEAKER_01 25:23

So this is a good time for me to ask the question. What do I do? Like when he says, What day are we leaving for this? Um I'll let you know when we get closer. Yes, we don't know yet.

SPEAKER_03 25:35

Yeah, we don't know that. Yeah, you know, I don't have that information yet. Okay. Today we're doing blah. Okay. And you can you can even say, Oh, I I just can't worry about that, Dave. I just got so much on my mind, and I want to enjoy today.

SPEAKER_04 25:57

Laura, when when someone says, like you talked about, why didn't you tell me about this doctor's appointment? Even though obviously someone has told them, is it best to just then just take that on and say, I'm so sorry, I think I forgot?

SPEAKER_03 26:14

Um, yeah, but I like to talk to the females. How are they feeling? Okay, let's not talk about no facts or figures. Facts or figures are are white noise now. Sure. You know, what really counts is how they're feeling. So if I said to you, well, you didn't tell me about that, that, Jocelyn, what am I feeling? Left him out. Left it out. Yes, yes, yes, and that's real. He's feeling really feeling abandoned. Yes. So we just go, Oh, I am so sorry. I, you know, I should have told you about that.

SPEAKER_01 26:55

Got it. Okay. See, that's the struggle I have. That's where my struggle point is. It's very hard because then I'm thinking, why am I having to take responsibility when I did tell him? I don't want to say about it. I want to say, Oh, I don't want to say, yes, I did tell you about it, but I kind of do. I know.

SPEAKER_04 27:18

But but you get to luckily, you still have a healthy brain who can understand that taking one for the team in regard of saying you're right, ultimately makes your day go better. Yes, ultimately makes the next few moments easier. So even though you're right, it it wasn't your fault, you didn't forget to tell him, but just understanding ultimately, what do I want in the next few moments? And me showing up one way is gonna get me there versus showing up another way, we could have a whole nother issue, a whole nother version of our next 10 minutes.

SPEAKER_01 28:02

Yes, yes, yes, yeah, but it you're right, it's hard. It is, it's a hard curve, and I know I've learned a lot, and I know I have a lot to learn, and it'll be something I'm gonna be learning all the way through. There will always be days when I'm learning more and mistakes what I wouldn't call mistakes mistakes is learning learning lessons or whatever it's called. But um just like I told you uh yesterday, I was joking with him. I put our dinner out, and he came over and kind of moved things around. I said, Well, who do you think you are? This is I don't share we gotta share this. And he goes, You don't even like me, do you? And I felt I I I that's what I mean when I say our relationship has changed. To be, you know, we would joke around and you know, do things, and now it's like I gotta be aware of my words that they aren't coming across, or he doesn't his feelings are reinstating that positive, you know, yes, loving feeling.

SPEAKER_04 29:10

All you can do is the best you can do, right? All you can do is like Laura said, try to anticipate or guess what you think he's feeling, and then act accordingly. But sometimes he's still gonna say something like, You don't even like me, or he's gonna be rude in front of the contractor, or send you a mean text, and the more dementia where you are, the more you understand that has nothing to do with me, it has everything to do with him, and the only way his words can hurt me is if I make a mean something mean about me because they're just words to him. He he he doesn't know even what he's saying, right? Or understand what he's saying. So the only way those words can hurt me is if I then interpret them as hurtful and decide there's something wrong with me, I'm not doing a good job. So that's really good news because that means we don't ever have to get this person with dementia to show up different for you to understand how amazing you are at this and what a good job you're doing. Thanks. Isn't that good news?

SPEAKER_03 30:38

You can take those words and and let them sink in because those those are helpful. What he says um isn't constructive, it doesn't help you, it's what how he's feeling. But that I know this is really hard because I struggle with this all the time. He he can only make you feel that a certain way if you choose to allow him to make you feel a certain way. But that's true even without dementia, right? Right, right, right, and and now you know I I know you were just going, why do I have to take responsibility to this? Why do you have to, Cindy? Why do you why are you having to make these changes? Because you can, yeah, because I mean he can't anymore. The part of his brain that we could say, Dave, you can't say that because it's hurtful, the part of his brain that would know not to do that doesn't work anymore.

SPEAKER_01 31:44

Yeah, but sometimes it does. I feel like sometimes sometimes it does. It's fine.

SPEAKER_03 31:53

Yes, yes, yes, but unfortunately, you know, um, in my presentation, and and I've had several people come up to me and say, be sure and tell the story about the cheese, because it helped me understand dementia so so much. But if we were to imagine that our brain was a solid piece of cheddar cheese, and we want to make more cheese, because every time we learn something um that that is complex and new and meaningful, we make more cheese because we store that information to use it later. So we want to have lots of cheese. Imagine if you think about how throughout our lifetime, so much that we've learned and made cheese in order for us to be human. Like, think about how much cheese we have to have, what we've learned over a lifetime to drive a car safely. I mean, you have to have cheese on to understand what your body's gonna do when the light turns red or when you have to make a left turn, or you know, there's so much that we've learned, these executive functions that we've learned in order to drive a car. And every time we learn something new and complex, we make more cheese. So we have we want lots of cheese. When an individual, a human who has this big block of cheddar cheese, all this executive function, when they begin to show us dementia symptoms, what that means is they've gotten a dirty rat in their cheese. One of these causes of loss of executive function. A dirty rat, maybe that's named Mr. Alzheimer's or Mr. Umrontia or Mr. Stroke or whatever that that dirty rat is. And we're not real sure how it gets in our cheese, but it gets in our cheese and it stays there for a very long time, most of the time. Not the case with Dave, but we're gonna talk about that here in just a minute. But Dave had a brain injury, which caused him to lose some cheese right away. But still, that dirty rat is still in existence in his head. And it and it's a hungry dirty rat called brain a brain injury, uh uh, a traumatic brain injury. That dirty rat is running around his healthy wheel of cheese, and it's a hungry dirty rat, so it's grabbing bites of cheese and leaving holes. So now when he goes to access executive brain function that came to him on autopilot in the past, now there's holes there. It's now becoming Swiss cheese. But think about it, there's still cheese there with Swiss cheese. So some days he goes to access the cheese that he used to be able to access on autopilot to complete a task. Sometimes there's cheese there and he completes a task. Sometimes there's nothing left there but a hole. That's when we see his brain accommodating by showing us these dementia symptoms, this lack of ability to complete these tasks that he could in the past. So that's why it's so confusing to caregivers because some days you see him hit cheese. Some days you see him hit holes.

SPEAKER_01 35:23

Yes.

SPEAKER_03 35:24

Yes.

SPEAKER_01 35:25

Yes, I love that description.

SPEAKER_03 35:27

Yes. And so I call them cheese moments. Cheese moments is oh my gosh, they're normal, they're back, there they are. And I call them whole moments when these these um there that brain is trying to accommodate, but there's no cheese there. And the brain is so amazing, it's trying so hard to accommodate, but it's causing so much angst in him because he doesn't feel any different. You see the differences, but he there's a part of him that can't explain to him why he can't get cheese, but then he he tries and and his brain wants to tell him he's still normal. So he keeps trying. You you need to you know be easy on yourself, Cindy, because it's no wonder you feel you know that that resentment, that confusion, you know, like wait a minute, why do I have to do this? Because you're having to always be thinking for him, be be trying to fill in for him those gaps in the cheese and still take care of your own cheese at the same time. It's exhausting.

SPEAKER_01 36:50

Yeah, yes, and there's times when um like I just need a break, and and lately I've noticed if I go somewhere, it's I want to go with you. What am I gonna do when you're not here? Um, and he's never been like that. We've always done a lot of things together, but there's never been like you can't leave, or you know, I want to go with you, you're gonna go away for two days, what am I gonna do for two days? Um and that is that weighs on me because I don't want to lose that for me, because I think it affects our relationship even more. There's just yeah, constant changes that absolutely navigated.

SPEAKER_04 37:36

Yes and that I guess guilt or you know, resistance that you have sometimes when you want to go away, but also you feel kind of bad about it. That we get the idea that guilt means we're doing something wrong, we should do it differently. But all guilt is, Cindy, is that you have two value systems that have intercepted. So you value being a good partner and a good wife and caring for him, and you value, just like you said, your own time, your own sanity, the relationship that you've built, keeping it intact, and they've just intersected, and so it's just like a red flag from your brain saying, Hey, you might want to slow down here. We've got it, we've got an intersection. These two things are intersecting, and you take a look at it case by case, and you decide, nope, I've got him, he's gonna be fine. I'm gonna go away for a few days. I need this. All right, guilt, thanks for the heads up. You're dismissed, we let it go, right? And it'll come up again when he says, Oh well, wait, you're leaving, and just tell your brain, settle down. We've already taken a look at this, you're dismissed, and that's all guilt is. And I hear, you know, so many caregivers talk about that feeling, and that's all it is, right? And and we're grateful that our brain does that because there are times when we go, Yeah, you're right, I shouldn't steal that thing from the store or whatever, right? And we go, good job, brain, good for pointing that out. I do value being honest, but there's other times when we take a look at it and then we just dismiss it, we make a decision and then we let it go. So thank you for that.

SPEAKER_03 39:22

And we let him feel too. So just like Justin's saying, it's okay for you to feel this. So, what is he feeling? Let's talk about that because we can help him with that. What is he feeling when he says you're going away? What what am I gonna do? What's he feeling? He's feeling alone, alone and abandoned. Yeah, yes, he's feeling abandoned. So, how can we help him with that? Because we can't stop it, fix it, or change it. How do we help him manage that?

SPEAKER_01 39:50

Well, Laura would tell me to say, I know you're gonna miss me, and I'm gonna miss you too. Yes, but I can call you and I'll be home in two days, and I'll call you both days, and I'll I can't wait to get back to you.

SPEAKER_03 40:06

Yes, so what did you do? You took that abandonment, and in the moment, you made him feel what?

SPEAKER_01 40:13

Love, safety. Not alone, yeah, safe.

SPEAKER_03 40:16

Now, can he store that in his damaged brain like you could? No, that's why a little while later he says, You're going away. When am I gonna? So, what do you do? You give him back the feelings in the moment. In the moment, you know he's going to be afraid because you're thinking for him often, and his brain is relying on that because you make him feel love, safe, secure, and valued often. So his brain's going, Well, how am I gonna feel love, safe, secure, and valued if Cindy's not here? Because you're doing a good job keeping him feeling that way. Yes. But what you have to do is let his brain feel that abandonment, but then reassure him. And you're you're gonna make sure he's safe and secure. He may not know that in the moment, but like you said, you're gonna check on him. He there's going to be someone there who can help him take your place. That's all we do.

SPEAKER_01 41:16

Yep. And he has told me several times. He's it's not like he's always on my case. He's every day he says, I don't know what I would do without you. And when I do his prescriptions every day, you know, the night and the morning, he goes, I couldn't do this without you. And I mean, he's very complimentary too. So, and it and that's what I mean. It's a roller coaster of what's it going to be like? Yeah.

SPEAKER_03 41:39

Yeah. But I think the more you talk to his feelings, the more you'll see him reflect that back to you. Just like now that you are talking to his feelings more, he's able to show you that he appreciates that more because you're actually helping him fill in those spaces. When you help him feel love, safe, secure, and valued, he gets to feel that more often. And he gets to tell you he's feeling that more often because you're helping him feel that. Does that make sense?

SPEAKER_04 42:08

Yes. And you're not trying to talk him out of his feelings, you're letting him have that feeling, and then you're redirecting him to a new feeling, which is perfect because we tend to try and talk people out of their feelings. Don't feel sad. We try and talk them out of it. And if you're trying to tell someone something and they're not listening, you keep telling them louder, stronger, right? But as soon as you give them the feeling, you validate him and say, I know, I can, I bet you are gonna miss me, and I'm gonna miss you. And then we redirect to making him feel loved, problem solved often.

SPEAKER_01 42:52

Yeah, when we have moments like that, it's like put a star next ready for that one.

SPEAKER_03 42:57

Yes, those are those are what I call gifts because we do get those, and it feels so good, but we give ourselves permission to feel these feelings too, Cindy. You know, I I want you to really, really feel that and and know that. And I will tell you, I have learned so much because Jocelyn's my life coach. You know what? I I carry a lot of of the caregivers' feelings when I'm working with them. I carry that a lot, and I started coming to Jocelyn for her to help me with all of that, and so that's why it was such a great union when we started working together because I can help you understand dementia, I can help you understand when you become dementia aware that it's okay to feel this way, and then Jocelyn can help you from there to really honor your. Feelings just like I'm teaching you to honor that person who does isn't able to do that for themselves. Yes, isn't that exciting?

SPEAKER_04 44:09

Yeah, yes, in the time, Cindy. I know you said sometimes I I go, Oh, that was wrong, I did it wrong. And those times are gonna happen, and when they do, I want you to just remind yourself, there I go, being a human again. That's all it is, right? I tell myself that all the time. I'm like, oh, being a good human today. Yes, that's it. Not a robot.

SPEAKER_01 44:34

I think Laura and I talked about this too. There's like that um grieving of what was, yes, and now what is. And it's not that either one, it's not that it's bad, it's just different. I I can't talk to Dave about my true fears or feelings because it would overwhelm him.

SPEAKER_03 44:54

Yeah, he can't manage it as much, even though it's hard for you to manage it, you still are able to do that and and to call Laura or Jocelyn up and and share with us because that's what we do. But um, he can't. He he you have to manage for him as well. And the the way you're gonna manage for him is not giving that information.

SPEAKER_01 45:17

No, and when he does find out, it's just black and white, it's information that he's he's either angry or he's encouraged. He's not on the um, he my son has his journey, Dave, and we have to let go and let him figure it out. And and for me, I can understand that, but for Dave, it's like nope, he'll never change, you know, he'll this and that. And so I just yeah, as a mom, it's hard to hear that because you suck it all in. Yes, like okay, I'm dealing with two people, two sick brains here.

SPEAKER_04 45:50

You are, yes, and I know that probably feels heavy and lonely for you because you can't talk it out with Dave, right? He can't carry part of that with you, so you need to just let yourself feel some of that and try not to push it away. Like it makes perfect sense that there will be times when that feels lonely and sad, and it's okay for you to feel that way. Like you feel that way because you're the kind of mom that you are, right? I mean, yeah, you you don't want to feel neutral about that. That doesn't feel like you being the Cindy and the mom that you want to be. So you just let yourself feel it. Yeah, and and on those days, you're not gonna show up as a perfect caregiver, which is just fine. Because Dave and your son don't want robot, they want they don't, I promise. Robots can't make them feel safe in the moments as well and loved. Yeah, yeah.

SPEAKER_03 46:56

And often I do hear caregivers um say that, you know, well, it's it's he's not the same person, yeah. You know what, Cindy? We all change, yeah. Just that this is not the change that you would have said, hey, I volunteered to be a caregiver. It's a different kind of change than what you expected. But all throughout our life, we all change in different ways. And so it's all about having a perception. This may not have been the change that I would have preferred, but there is meaning and purpose in this. And there are still times when he is the Dave that you knew, and you can relish it with that. That's that's you know, you can have those moments of meaning. But also, Cindy, you get a big gold star because you reached out for help, you know, right now. And and the sessions that we've had, and and together, really what Jocelyn and I are saying to you is yeah, this is hard and and it's painful. And we we all we all three have a lot to learn, but we're doing this together because that's what was meant to be, and and I am so honored to learn from you as well.

SPEAKER_01 48:24

So this has been, I mean, talking with you and going to your seminars and um your book, I mean, all of that has given me um tools.

SPEAKER_04 48:38

Yeah.

SPEAKER_01 48:38

With I mean, without the tools, without talking to people and sharing and um having this sessions with Laura, I I probably just I I don't know what it would be like.

SPEAKER_03 48:52

Yeah. You you would still be getting through it, but hopefully we have um, I have Jocelyn has um the book, the seminars, other people in your life. Um we're helping you to um take one more step to get to get where we need to go. And you are where you need to be. You are um and enjoying each other's help and company and and um just lessons from each other, you know. I I think that's what we're supposed to be doing. And I keep telling you over and over, Cindy, I am so honored and excited and happy when I'm I can be with you and we can learn together.

SPEAKER_01 49:36

It's yeah, and we've talked about how when you're with other people, like in a a group setting or something, or somebody comes over for a few hours and they say, Oh, Dave's doing great. Oh, that's I'm so glad he's doing so good. It's like, hey, hang out with me for 24, 48 hours.

SPEAKER_04 49:54

Exactly. And you said, you know, Dave's not the same person, and that's true at times. But where are you, Cindy? You're so much stronger and more amazing than you were when this all started. That is very, very true. You have stepped up, you're not the same person you were at the beginning either. No, and you'll be a different version at the end, and like I kind of can't wait to meet her. It's gonna be even more, right? Yeah, yeah.

SPEAKER_03 50:28

I so appreciate if there was if there was one um sentence or a couple of sentences that you could tell our listeners what you what you've gotten from this session, what what would you say to them, Cindy?

SPEAKER_01 50:45

Oh wow, that's a that's a heavy question. Um I think it would be to take the time and be still sometimes to just not take life too seriously, one day at a time, not to worry about what's gonna happen in a month or six months, but to be present right now and to do the best job I can do, to like you said, show them love and security and and be kind to myself when I'm not doing it the way I probably should. Um progress, not perfection. I think it's just and reaching out for help.

SPEAKER_03 51:25

Thank you, Cindy. Thank you, thank you. I told Jocelyn before you came on, you are such a great example of who someone who wants to do whatever they can, the best they can, and that's all we're being asked to do, Cindy. Um you're I can see you love him. I can see um you you miss him. I can see that that you're learning to more love yourself, which is really, really important because you are pretty lovable, by the way. So um thank you, thank you for sharing. And this means so much to other people in this position to to know what do I do? I don't know what to do. Well, we can help you. We're gonna help you take that next step. And and um uh I just like I said, I always tell you, I'm so honored to be next to you on this journey. And thank you.

SPEAKER_00 52:31

I'm just so grateful that I was directed towards you.

SPEAKER_03 52:35

And I could just spend hours talking about your journey and how hard this was, and how you you managed to get over um some of these obstacles, and you still are there caring for him and and and doing things for you, and that's all what else are we supposed to be doing, Cindy? Um, thank you, thank you for sharing tonight.

SPEAKER_01 52:57

Well, thank you both.

SPEAKER_03 52:58

Of course, thank you.

SPEAKER_01 53:00

I'm honored that you even asked me. So I yeah, thank you.

SPEAKER_04 53:04

We're honored that you came. Thank you for trusting us and being brave and telling your story. It matters, it really does.

SPEAKER_03 53:11

You are not alone, you are absolutely not alone. Thank you, thank you, Cindy. We wish you everyone who's listening tonight, we wish you calm seas and peaceful winds on your journey. And thank you for coming to us on the podcast. Jocelyn, do you have any um ending remarks you'd like to share?

SPEAKER_04 53:32

Just want to thank Cindy. I know it takes courage to tell your story, and just to all the caregivers out there that might be listening. This is a this is a scary journey. And I hope you know that you wouldn't build a house without some tools. You would need tools, and we are just here to give you the tools to walk along this journey, and we are always here for you, and we're honored to be here for you. The fact that you're listening to this podcast tells me you want to do this well, and that is so lovable. So, again, thank you for joining us.

SPEAKER_02 54:15

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 later.