How Do You Care for a Parent with Dementia?

In this episode of the Dementia Lifeboat Port of Call podcast, Laura Wayman and Jocelyn Ives sit down with caregiver Joe Dunham to talk about the emotional reality of caring for parents with dementia symptoms, medical complications, grief, and caregiver burnout. 

Joe shares the heartbreaking and overwhelming experience of navigating dementia care while trying to advocate for his father through hospitals, specialists, assisted living, and end-of-life care. Even with years of dementia awareness experience, he found himself exhausted, confused, emotionally overwhelmed, and struggling to manage everything at once. 

This episode answers important caregiver questions like:

• What does dementia really look like in everyday life?
• What are dementia symptoms beyond memory loss?
• Why do caregivers feel overwhelmed and emotionally exhausted?
• How do you support someone with dementia when doctors aren’t listening?
•  What helps caregivers cope with grief, guilt, fear, and burnout?
• How can families become more dementia aware?

You’ll learn:

• Why dementia symptoms often involve loss of executive function, not just memory loss 
• How emotional awareness changes dementia caregiving 
• Why caregivers need support too 
• Practical ways to reduce overwhelm and take things one moment at a time 
• The importance of asking for help and building a support system 
• How compassion and dementia awareness can improve care for everyone involved 

This conversation is for family caregivers, professional caregivers, healthcare workers, assisted living staff, and anyone supporting a loved one with dementia, Alzheimer’s, cognitive decline, or memory care needs.

If you’ve ever felt exhausted, confused, guilty, or alone while caring for someone with dementia, this episode will remind you that your feelings are valid and that you are not alone.

Follow for more dementia caregiver support, dementia education, emotional resilience tools, and real conversations about caregiving.

laurawayman.com/podcast

Transcript

SPEAKER_00 0:00

Welcome to a space where caregivers are truly seen and heard. Where together we explore caregiving as not just a role or a series of tasks, but as a profound emotional experience. Hi, I'm Laura Wayman, the Dementia Whisperer.

SPEAKER_02 0:19

I'm Jocelyn Ife, certified life coach in dementia and emotional awareness for caregivers. Together, we shine a light on the real emotional journey of the caregiver. The guilt, the grief, the frustration, fear and worry, and the exhaustion. And here we celebrate and honor the strength and courage and hope and the small moments of joy and connection that carry you through the journey.

SPEAKER_00 0:49

This space is where dementia awareness becomes emotional empowerment and where your story, your feelings, and your resilience matter. Welcome everyone, and today we have a very, very special guest. He is just someone I adore and someone I have watched so bravely and and um consistently worked through quite an emotional and and really physical journey caring for his parents. Now I'm gonna introduce him in just a minute, but I want you to know that Joe is very, very dementia aware. We have worked together and learned dementia awareness. We have worked together and shared dementia awareness with our staff and with other families. And so the dementia aware piece, that learning about what dementia really is and understanding that, Joe is way ahead of the curve here. However, what he has experienced, especially in the past few months, has been the challenge because the world is not dementia aware, especially the world where he was trying to find help and um and emotional support in his journey caring for both of his parents. So I want to introduce Joe Dunham. I want him to share with you the struggle and the joy and the pain and and the love and just this all of all of the strength that it's taken to get through his journey with his parents. So hi Jo, we're so, so lucky to have you.

SPEAKER_03 2:52

Hi, Laura. Hi, Jocelyn. I'm so glad to be here. So happy I could join your your blog today.

SPEAKER_02 2:59

It's very cute, Joe. We're so happy. Thank you.

SPEAKER_03 3:03

I've been out of touch for a while because it did my journey did took a take a turn that was not a good turn and wasn't expecting it. So um my being here today hopefully will shed some light for others who are going through the same things that I've been through for the last about a year now. Um and so um I'm always happy to help where I can. And so Laura and Jocelyn invited me to be on the show today, and I want to help where I can.

SPEAKER_00 3:35

And and absolutely, we know you will. And so um, I think that wherever you would start in the beginning, and um, you know, maybe even your frustration about how you, because you're dementia aware, because you understand real dementia symptoms, because you're you know beyond that that myth that it's all about memory loss. Where do you you want to talk about your mom today? You want to talk about your dad? Do you want to talk about um the most recent journey with your dad? Um, where would you like to start? Because you have so much information. We can have you back for part two. So whatever you want to do.

SPEAKER_03 4:18

There might need to be a part two at some point, but um yeah, um, mostly my dad, because um there's so much that happened in a short amount of time. There's so many pieces of it that I experienced that um my family experienced, my dad experienced. Um and it was it was pretty intense in that as much experience as I thought I had about being dementia aware and and how to help others with their journey, um, it catches you a little bit off guard, even with with my experience. Even even because there were many days when I was thinking, okay, come on, Joe, I can do this. I've got lots of experience, I can help others all the time, and so this can't be a big deal. And so, yeah, um my mom is um still with us, she's an assisted Libby. My dad has passed away, he passed away in um February, and and so and it was a rough several months of dealing with so many different aspects of it.

SPEAKER_00 5:31

So, Joe, how when when you first started seeing your dad struggling, tell us what you were seeing and how you were feeling.

SPEAKER_03 5:39

Well, when it when everything started to take that turn, when everything um when I realized, okay, we've got you know a little bit more to deal with than what I initially thought. Because if it was just working with dementia, I was like, yes, I'm ready for this, we can do this. Because that's that was one of the things that you know came across our plates um in a short amount of time. And so in the beginning, we had medical conditions going on. My my dad had COPD, he had um, oh man, he had lots of problems with um clogged arteries, um, including both of his carotid arteries, which were um contributing to a lack of oxygen to the brain. And so, like I said in the beginning, it was rough because I wasn't really sure exactly what was going on, if there was dementia, if it was um the lack of oxygen to the brain that was just causing some confusion here and there. Because as any of us know who have been um living that or going down that journey, um there's several different causes of dementia symptoms. And so you get to a point where sometimes I was like, well, wait a minute, wait a minute, no, no, it's not that, it's this. And then the next day, the very next day, I was like, no, it's not that, it's this. And so, yeah, there was a lot of it going on that was even for me thinking I've got this, it was confusing and jumbled. And there's so many different parts of it with the medical world that looking back, I can honestly tell you many times they made it a lot worse for me and and my dad and my family than what it should have been.

SPEAKER_00 7:26

And how did they make you feel when they weren't really listening to you?

SPEAKER_03 7:30

Well, uh that's funny that you asked that question because it wasn't just that they weren't really listening, it was that they were giving advice and telling me things that sometimes I was pretty sure were not accurate.

SPEAKER_01 7:42

Yeah.

SPEAKER_03 7:43

And sometimes I was pretty sure, no, that you're you don't know what you're talking about, and and you're focusing on the wrong things. And so it was a mixture of feelings of one minute I was angry and the next minute I was like just frustrated. And there was oh man, there were so many different medical uh experts that weren't giving accurate information, and and so that just contributed to the frustration and anxiety that I was already having to the situation, it just made it that much worse.

SPEAKER_02 8:21

Right. And the medical professionals, we look at them as an authority figure in this area. So when they were giving you this information and you're questioning some of it, what we often do is then we question ourselves, right? We're like, no, I'm sure it's me that's wrong because I just don't know. And then we feel even more confused. And and I uh really want to touch on what you said that you know, you've worked in this area of expertise, you know a lot about dementia, you've worked in the you know healthcare industry, and yet at times you are kind of telling yourself, I I should know this. Uh this is how do I not know what's going on? How do I not know the answer here, right? And we we do that to ourselves, and even when I'm working with clients and I'm giving them tools to help them with their emotions and their thoughts and their feelings, they will often come to me and say, Okay, well, I did it all wrong and I know better, and they judge themselves. And I just want to tell you that that makes it so much harder when we judge ourselves. So whenever I catch myself with that sentence in my head, like, I knew better, I should have done better, really try to shut that down because there's just no upside to it. And we do do that as we learn things, so then we have whatever original emotion was there with a whole big fat dollop of judgment on top, which makes it so much worse. So I love that you brought that up. Yeah.

SPEAKER_03 9:57

Yeah, and it is the the emotional part you're going through, you're you're so um, I don't know, you're so at a loss, yeah, because you're trying to deal with several different things all at the same time. And so you reach a point where not only you're uh um physically exhausted, but emotionally and mentally as well. And so you get to get to a point sometimes where you're like, you might not even hear the words that they're telling you. Hearing it, but it's like what was, and trying to take it all in and sort through it and make sense of it is I mean, and I always thought I'm I'm a pretty strong person, I can do this because this is what I've done for 20 years. And then I did several times felt like I was underwater or in a cloud where I'm just sitting there listening to their words and thinking, wait a minute, wait a minute, no, that doesn't I'm not hearing you. Yeah. Yeah, it was there were several moments like that.

SPEAKER_00 10:55

And don't don't you think that's a perfect example of even us as professionals need um the kind of support that Jocelyn gives? Because like you and like you and I, we say this to ourselves. I know this stuff, you know, and and even to a point where we're, you know, a doctor's telling a family, well, it's this, this, and this, and we're going, no, it's not that, that, and that. You know, it's about um helping that family member, helping that professional, you know, know that every single person is different and we have to remain fluid and flexible. You know, we can bring our knowledge and what we've experienced in the past, but we have to have that almost an open heart to learn how to deal with each situation as it comes up, right?

SPEAKER_01 11:50

Right.

SPEAKER_00 11:50

And it's hard when you're that person in that emotional space to back off and say, hey, I need to look at this a little differently, right?

SPEAKER_02 12:00

Very hard because you're very emotionally tied to it. So, like you said, you're trying to sort through facts and figures that they're giving you, and yet you're trying to deal with all these emotions, meanwhile, trying to care for this person and keep them safe while this is all going on. So it just, I think it is part of this journey, especially in the beginning, all that confusion. But I want you to tell, I want to tell you that every time we think the thought, I don't know what to do. It just feels true, right? Feels so true, but it's just a lie. And our brain loves to offer us that sentence because think about when you when someone asks you a question, you're like, I don't know, I don't know what to do. Then you kind of stop thinking about it for a minute, right? It's almost like you threw up your hands and you don't have to focus on it for a little while because you don't know what to do. And your brain loves that. One of your brain's jobs is to try and conserve energy. And so we hear ourselves throughout the day, I do it to myself. I don't know, I don't know what I'm gonna do about that yet. And I kind of get to stop thinking about it for a minute. But the truth is, and this is true for all you caregivers, you know your loved one best. Not the medical professional, not the you know, staff at assisted living, you know them best. So all you're doing right now is gathering information. You're just gathering all the information you can, but you are allowed to believe that you'll know exactly what to do once you gather this information. And ironically enough, choosing to believe that literally opens your brain up to all different creative options, all different solutions. And it's true, you know this person better than anyone, and you're dementia where.

SPEAKER_00 14:00

So even though it felt uncomfortable, you had the answers. You did, even though it was difficult at the time. So um, you know, we can we can move on, but I wanted to stop and really think about right now. Okay, so Joe is feeling like, you know, you guys, you you know, you the medical profession, you you don't know what you're talking about. I've seen this a hundred times. I've worked with families, I know this, and your brain was correct. It was right, but it wasn't helpful that they weren't hearing that. So do they need to be dementia winner? Absolutely. Can you imagine how much easier it would have been if you were working with medical professionals who would have said, you know, everybody's different. This is what we're seeing. Um, tell me more about what you're seeing, and together we can work on it. Instead of saying, well, it's probably this, when it possibly wasn't, right?

SPEAKER_03 14:59

Yeah. And there was a big part of that between the the pulmonology doctor, the pulmonologist that we were seeing as well as the neurologist. And of course you can't get them both in the same room at the same time and say, wait a minute, okay, listen to what the two of you are saying and and tell me this, tell me this makes sense. So, yeah, there were several times where it would have been helpful if they were more open and listening to what I was trying to tell them because I wasn't always explaining it exactly right because of the emotional aspect of it. And I'm trying to keep everything straight and try and keep the communication with them um on a level where we could understand each other. Right. And it didn't always work that way. And so I would I would have a conversation with the pulmonary doctor and say, well, this and this and this, and and and he he was like, sometimes he's like, Oh, yeah, you might be right. Um but you know, but but I think maybe this, and there was there was just so much of it that was just left open, and like you were saying, Jocelyn, I got to a point where I was like, okay, let's take this on the next day. Let's let's let this rest, let this go for a minute and start over again tomorrow.

SPEAKER_02 16:15

Which and there's nothing wrong with doing that, Joe, at all. I mean, we need to take sometimes we need to walk away, right? And we need to stop. So you're not doing it wrong, but I do want to rem you to remember that you do know. And sometimes in my head it sounds like I don't know, but I will. I do, I will know what to do. And and you know, you're saying the doctors sometimes they sounded like or felt like they weren't listening to you or they weren't open. And definitely, I mean, we've all experienced that with the doctor, but but I do see sometimes that families will come in and they're uh not listening to the doctor, they want to tell their story, which of course they do, but it works both ways, right? So be willing to be wrong and listen to what they have to say, but ultimately just remember you get to decide. So when someone maybe says something that you're like, huh, I'm not sure, then tell me more. Like, I want to know everything about what you think, and I still might decide that I think what I'm thinking is right, but tell me everything. So again, just look at it as like I'm gathering all the information I can, and I will know what to do.

SPEAKER_00 17:35

And I like to remember that the medical profession knows the mechanics and the and the clinical side that I don't know, but they don't know the emotional and social side that I know and that you know. And so that's the part, and you know, working together, we learned a lot about the physical clinical side too. Um, but you know, our job is to help that synergy with families, with ourselves, um, that synergy of learning to um support both of those sides. And it's difficult because the clinician side is so black and white, and our side is so gray and many colored, right? And so many different facets. And so um, you know, that's gonna bring about more frustration and confusion because it's so much more helpful when we're working with um the medical side that has that um that open door kind of policy for the dementia awareness and the and the emotional awareness. So um, you know, it it used to be called, um, and Joe, you know, us us oldsters, we it used to be called bedside manor. And there's not bedside manner when it comes to dementia, which there absolutely has to be more bedside manor because what we're talking about, what the only thing you had left with your dad when he started showing these dementia symptoms from all these different causes, he was losing that executive brain function and the ability to communicate the same way, is you have to talk to his feelings. But you're gonna be so much better as a caregiver when you're talking to your own feelings clearly, when there's that concise understanding of how you're feeling and that it's okay, right? Then you understand theirs so much better. So, yeah.

SPEAKER_03 19:49

Yeah, there was um several times when I had to really stop and and regroup because because you've got the medical team and all the caregivers, whether it's the hospital, skilled nursing, or or whatever, and then you've got your own family who and I have to I have to well, I had to during that time, I had to stop and realize, okay, yeah, I've got 20 years experience, and so I'm gonna be more on top of it than pretty much anybody else in my circle. And so, as much as some people tried to understand and tried to, you know, offer the help and uh suggestions, whatever it was, it would cause me shortness of breath sometimes. I'm like, wait a minute. And and so giving all of those people that I just kind of mentioned a little bit of credit because I had to stop literally stop and think, okay, this doctor that I'm dealing with right now, whether it was the hospital doctor, the neurologist, the whoever, yeah, okay, they're they're trying to take care of 20, 30, 50 people in a day. And they're going from one bed to the next, or one whatever to the next, one patient to the next, one phone call to the next. And so I've got just me. I've got just me and my dad. But and but yet we still can't really make it work as hard as I tried. And sometimes I felt they were trying, but most of the time I felt they weren't really trying because they had so much on their plate as well. So it's right, right. I got very jumbled often.

SPEAKER_02 21:33

Yes, your interactions with them, you mean, and the messaging and all that between yeah, yeah, and that makes sense. And part of this journey, too, is you're gonna feel confused. Like, and that's okay. I don't want you to judge yourself for that, or it's just kind of like accepting a big part of this in the beginning is gonna be confusion. So that's okay. I'll just feel confused while I get. All this information. I can be confused. I've been confused before. And at the end, I have figured it out, which is what you did, Joe, right?

SPEAKER_03 22:10

Yes. Yeah, one day at a time. It was but it was constant. It was pretty much 24-7. Um, no matter if I was trying to sleep at night, of course, I'm still waking up several times during the night. Go, wait a minute, did he say blah blah blah? Or did she say blah blah blah? And okay, so I'm gonna have to make sure I address that as well, because that's not the case. Or did they say blah blah blah? And now all of a sudden I'm like, oh, I didn't think about that. And that would be part of it. So it's just it was such I don't know. When I look back now, it really was turmoil. It was chaos and turmoil a lot of times.

SPEAKER_02 22:53

Yeah.

SPEAKER_03 22:54

Yeah. And so people who aren't don't have a 20-year history of taking care of those suffering from dementia symptoms, I can't imagine what it's like for them.

SPEAKER_02 23:07

If if you had to do it again, that that initial beginning part where you were kind of in this discovering what is going on phase, is there anything you would do differently? Like, would you record your interactions with the doctor so you could go back and replay them more? Is there anything that you have now thought of, like, ah, you know what would have been great if I did?

SPEAKER_03 23:29

Well, let's see. Um probably several things that I might have might have done a little bit differently. And since you mentioned the recordings, uh towards the end, I was recording the phone conversations that I was having because there was many times when I would go back thinking about the conversation I had that I, you know, that I couldn't that I didn't have recorded. And so um, towards the end, there was a couple times where I was like, I I want to be able to replay this and make sure I didn't miss anything because I was, you know, and this is a side note, I was constantly trying to keep on top of all of my dad's household items, the you know, the landscapers, the paying the bills, uh getting the car registration, you know, there's all of that part of it that was going on at the same time. Right.

SPEAKER_00 24:21

You were having to think for him.

SPEAKER_03 24:24

Yes, exactly. And so, yeah, it would have been helpful if I had that. Um, it probably would have been helpful if I had um a sibling or somebody else who felt like they could handle it as well, but I that was something that just wasn't there, and for most people, it probably isn't, you know. And my wife is working full-time, and so she was there as much as she could be. And several times she said, I don't know how you're doing this. Because she would hear, you know, she works out of our home, and she would hear my conversations, and at the end of the conversation, she'd be like, I don't know how you're doing this. I don't know how anybody could do this.

SPEAKER_02 25:05

How did you do it, Joe?

SPEAKER_01 25:07

How did you do it when you look back? How did you do it?

SPEAKER_03 25:10

I wish I could say I was terribly organized, but I wasn't. There was days when I felt like things were falling apart right and left, and trying to keep doctor's appointments, you know, not only scheduled and rescheduled, and no, we can't make it today because we're not having a good day, and it's just not gonna happen. And so I just took really there was days um where I just took one moment at a time. Perfect. Because that's all you get to a point where that's really literally the all you can do.

SPEAKER_02 25:43

Absolutely, and that's that's kind of all any of us have, right? Is one moment to the next. But that was beautifully put because you're exactly right. When things start to feel overwhelming and like you're juggling a million balls, then that means we need to shorten our lens length. Like we bring it in. What do I need to do in the next hour? That's all I need to figure out right now. And then what do I need to do by the end of the day? Because we start spiraling out, and just like you said, it just feels like chaos. So we just shorten it in and take it moment to moment, hour to hour. That was beautiful, and and you did do it. That's what I want to point out. It felt like chaos, and you managed chaos, like nice job.

SPEAKER_00 26:32

And and isn't life just messy anyway? I mean, life is just messy, and then you throw dementia symptoms in there, and you know, just kind of um broadening our lens about dementia awareness, because right now we're talking about all those things that you had to handle, the landscaper and and this and that, that your dad could no longer do because his dementia symptoms, he was experiencing loss of executive function with all of this. It wasn't that he forgot your name. That doesn't have anything to do with dementia symptoms. It's about all these tasks that he was doing and managing and taking part in all throughout his adult life that was on autopilot for him, that all of a sudden you had to take all of that over. And that's what's so hard for um that caregiver to realize because most caregivers don't have any idea before this happened what actual dementia symptoms they are going to be dealing with. And so, you know, when when they came to us as professionals and we could hear that, and you know, they'd they'd say, well, you know, they they must not have dementia dementia because they can remember our name. Well, you know, they could no longer take part in a conversation. They couldn't um follow a recipe, they um they couldn't get their pajamas on or know when to change their clothes, or or those kinds of tasks that often go unrecognized as this loss of executive function, which all of a sudden it kind of slaps that caregiver in the face. No, this is really what you're gonna be dealing with. So let us help you with not just how to manage all of that and um and to realize that you're not gonna stop it, fix it, or change it because that will make it worse, but to accept it and know that you that we're gonna help you and that you can do it, and then get that um that helpful uh change in your perception about how you're thinking about it. And so that's what's going to give you that that strength, that resilience. And so that's that's why I'm so excited that you're sharing this story because this is what really goes on. This is real stuff. And you made it through, Joe. You've made it through. Well, you're still working on something, and we can talk about that too. But but look at how far you've come. And in that, we can um really say to the medical profession, we can help you do this a little better. We can, we can help the rest of your family, you know, feel good about learning this. And every caregiver who's listening today, they can, you know, once again, I want them to have an open heart and understand that we can help you make it through this. And and that there is these small moments of joy and resiliency that that will help carry you through. So um, so we've gotten to this point right now. Let's let's kind of move on a little bit. So you're hearing all this stuff, but your dad continues to have some dementia symptoms that are really challenging, like loss of balance and coordination. So he's falling. And can you stop that? Joe, no. What? So tell us how how you were managing that.

SPEAKER_03 30:20

Well, there's just like every aspect of dementia care, there's so much at any given point that you're trying to juggle, that you're trying to keep intact. And even to the point I was gonna say earlier, to the point of you're in it, you're in the middle of it, and you're trying to make sense of it. You're trying to keep dad from falling, you're trying to understand why he told you he's been in the basement for three days with nobody taking care of him. You're you're trying to put it all together, and you're so in the middle of it that it's extremely challenging for somebody who thought, piece of cake, I can do this. And then while you're sitting there and all of this is going on, you know, I got slapped in the face several times throughout every day.

SPEAKER_01 31:11

Not good. Yeah.

SPEAKER_03 31:12

Yeah. Yeah. And so um how I managed it, um, again, pretty much back to moment by moment, but there were times when, oh, I don't know, I could give you example after example, but here I am in the assisted living at that at one time with my dad, and he was asleep in his recliner. It was dinner time, he hadn't eaten lunch. I really wanted to get him to the dining room so that we could get some food in it. And he just would not wake up. He, in fact, I almost sent him out because he was almost non-responsive. And so, and so I went to the dining room. My mom was there waiting. They both were staying in the same assisted living in different rooms, and my mom was waiting in the dining room for him because she wants she would only go if he was going. And so I was trying to get him there. I leave his room because he's out, and I went to tell my mom, you know, we'll we're working on it, and to get a caregiver to come and help me. Well, I wasn't gone two minutes, and he woke up, went to get out of the recliner, down he went, cracked his head open, out he goes to out he goes 911, just like that. And so there were many occasions like that where I felt like I had to be in three different places at the same time, and trying to keep on top of it, trying to tell the caregiver, no, don't put his shoes on, no, don't try and give him the medication because he obviously can't swallow right now, you know. So you're just like all over the place.

SPEAKER_00 32:58

Oh my gosh, I can only imagine how that felt, Joe.

SPEAKER_01 33:01

Oh my gosh.

SPEAKER_02 33:03

I hope you had moments where you had some compassion for yourself. Like you were like, oh my gosh, look at me go.

SPEAKER_03 33:11

I don't I don't know if compassion ever entered the equation at all. I do, I can tell you, I started because I lived in Roseville and they lived in Vacaville. I started taking the train back and forth because the traffic on top of everything else was just making me even more crazy. So at least when I got on that train, it was a moment of peace, a moment of I didn't have to worry about anything else. I could just sit there, reflect, and regroup.

SPEAKER_02 33:38

I love that you did that. And that brings up a really good point is that when you're in the midst of it, like you said, you need to be three places at once, and it's all coming at you. And we often feel like I can't find any time for myself. I can't take a break. It's it just I don't have any time to myself. And it feels like we give the credit to our loved one who has dementia and the doctors that are calling and all the things that are happening around us. It's their fault that I don't have any time, right? But at the end of the day, it is our job to take care of ourselves. So think outside the box, right? And just that's exactly what you did. You said, you know what? I do need a minute, and there's no reason I have to drive, I could take the train. You took responsibility, you took ownership of taking care of yourself so you could care for your dad and your mom. And and that was beautifully done. And sometimes we just get in our habits and our ways, and we're like, well, no, I have to drive, or I have to make dinner, or I have to do this, and and it's like, zoom out a little bit and look for ways that you can change a few things and get yourself whatever you need. And it kind of sounds like in your head, like, what am I needing and how am I gonna get it?

SPEAKER_03 35:01

Well, and I I'd like to go down this one path for just a second because I I want people to know it's it goes above and beyond just what the three of us are discussing today, because what I just mentioned about I would get on the train and go. Well, I didn't feel like I could get on the train and go because they both needed a lot of care that assisted living staff could not handle. Yeah. And so luckily, my parents have the resources that that I was able to hire a private caregiver to come into the assisted living. Excellent. Because it was obvious, and me managing assisted living, I already knew this that it's a difficult situation when there's any sort of dementia, um, mild cognitive impairment, even. It was it's the staff there, they're they are just not staffed. And then you guys know the story too. The staff who are there, many of them aren't qualified. Many of them just want to get their paycheck, many of them want to say, here's your socks, put them on, and I'm gonna turn around and leave. And so the help is not there, it's just not there. And so, had my parents not had that, those resources available to them to for me to be able to hire extra care to come in, it would have been 10 times worse. Because it was bad, but it would have been 10 times worse. And most people don't have that.

SPEAKER_00 36:26

Most people don't have that at their fingertips, and so you And a perfect example of why professionals need to be dementia aware and why family members need to be dementia aware. You know, when you and I were working together, we figured that out. When a family would come to us, we were not only training our staff in dementia awareness, we insisted that the family, when they would sign the admission papers, that they would have an hour with us to get them dementia aware as well, so that they could change their expectations about what we could and could not provide, even though we were working to provide the very best we could in the moment, we still needed their help, right?

SPEAKER_03 37:13

And that's and that was even more challenging because you're dealing with family members who really know nothing about senior care, about medical conditions, about the dementia piece of all of it. And so, Laura, you and I both sat there how many times and looked in their eyes, and you could tell they couldn't absorb it. It was too much.

SPEAKER_00 37:37

It was just too emotional, absolutely. And and yet we still had so much success coming from this in a very different way and helping them to change their expectations. You know, we had a gentleman who absolutely we could not get him to shower. He just would not do it. He resisted it. Now he had a little younger wife, and she was still working, and and so when she brought him to us, just like Josh was saying, she knew him better than we did. So she had brought him to us, and most other challenges with him, we were figuring out. We were training our staff and working together and customizing our care, but we could not figure out that shower. And so she came in to me and she said, the the wife came in to me and she said, you know, I don't think you guys are showering him. And and he he's kind of smelly and we need to get that done. And and so I said, you know, it's such a challenge. We've done all of our usual go-to kinds of things, and we've we've really just come to the end of our rope. We're really challenged. He's just refusing that. And she kind of looked at me and she said, Well, I didn't have any trouble with that. And I said, Well, how'd you do it? And so she said, Well, I would just take off all my clothes and get in the shower and go come here. And I said, Well, we can't do that. So I thought, well, wait a minute. We can use her wisdom. And so I said to her, um, you know, if you could come twice a week and just help us with the shower, if however that works for you, we would really appreciate it. And we'll take your shower charges off. If you're gonna come do that for us, you can put a do not disturb sign. And you know, it was really talking to her feelings too, because what she said to me is, I would love that because I kind of missed intimacy and coupling with him, and I could do that. And I said, absolutely, we supported 100%. So, you know, it's it's those kinds of things that is that emotional support, you know, that helped her to feel that love and and and security that that we were trying to give and that we couldn't, and she could join in and build our village. And so, just like you're you're saying, Joe, we need to change that perception and that and those expectations. And how do we do that? By utilizing this information that we're talking about today. We can help professionals feel more empowered, both um have that emotional more emotional stability and and and a found a great foundation and you know, these tips and techniques that with their care approach that's going to make them feel more empowered more often.

SPEAKER_02 40:43

Yes, that's beautifully said. And and you're right, Joe. When someone has the resources to hire some, whether it's caregivers to give you a break, whether it's delegating household duties out so that you're not trying to manage those as well, that's awesome. And and that's wonderful, and we're all for it. But you're right, some people don't have that. You don't have the luxury or the ability to hire additional help. And that's when you start asking for help, right? And you know, people don't want to ask for help, they feel like they're imposing and it's kind of uncomfortable. But the alternative is that you do everything yourself and you're very uncomfortable. And you know what feels awesome? Helping someone. Don't take that away from those people. Ask them. That will actually feel amazing for them to help you. People want to help, so gather up your courage and start asking people because it really is such an amazing feeling to help someone, and you need some help. It takes a village. This isn't something that you should be able to do by yourself. You shouldn't. You should need help.

SPEAKER_03 41:59

One of the things that I learned throughout all of this is sometimes it's not a matter of whether or not you want to ask for help or feeling like you're imposing on somebody. It's that you don't know, especially when you're in the thick of it, you don't know where to turn. I had there was VA benefits available to my dad that I had always wanted to throughout this whole time and even prior to find out about it and what do I need to do, because I'm pretty sure he qualifies for it. But when I when I got down that road into the thick of it, I couldn't even, there was no way I could address VA benefits. Well, when we reached towards the end and I was we were getting ready to go on hospice, that's when the ICU people who were actually pretty helpful, but it was we were at the end. And so anyway, long story short is I contacted VA. Well, turns out my dad didn't turn in the paperwork many years ago that he should have turned in to help him qualify for certain VA benefits. Well, you know, there's aid and attendance, there's things that are available, but people don't know it. People don't know where to turn, they don't know where to start.

SPEAKER_02 43:12

It's so true.

SPEAKER_03 43:13

I was even one of those.

SPEAKER_02 43:15

Yes, and it's so true. But again, when we allow ourselves to believe, even though your brain wants to say, I don't have time for that, I can't do that. When you uh kind of claw your way sometimes to the belief that I can figure it out, that's when you start getting creative. Like, you know, that college kid that lives across the street, I'm gonna pay him for four hours of his time to do some research for me and start figuring right. Or one of my kids that I mean, and we start getting really creative when you allow yourself to believe, oh, I can so figure this out. I might not do it myself, but I can think of ways to get help. So you're exactly right. There are resources out there, but it takes time to find them.

SPEAKER_03 43:58

Right.

SPEAKER_02 43:59

Yeah.

SPEAKER_03 44:00

And when you're functioning by yourself, which is also the case for a lot of people, it's it is. It's almost impossible.

SPEAKER_00 44:06

Yeah. Yeah. And I think that's the whole purpose, the whole mission of what you and I and Jocelyn are trying to do here is is to take this time and and and as comfortably as possible talk about these things that are uncomfortable, that you may not think you need to know, but uh but we're telling you right now that you do need to know this. You know, you you need to um to to in order to get that that stuff, I believe in in order for us to get to where we need to be with senior care, I believe that dementia awareness like this needs to be a high school class. You know, we yes, we need to be learning this. We need our audience to say, you know, this information would be good for my church congregation. This information would be helpful for um the Chamber of Commerce. You know, this this is exactly what we all need to um get past that stigma of uh I don't have dementia and I don't know anybody who has dementia, so I don't need to hear this. Oh, yes, you do, because not only do we need to be dementia aware because you the statistics say you're probably gonna be in this somehow, um, a loved one, um, you know, a coworker, so it's going to come across your path. It probably already has out in your community. But what we are talking about today goes beyond just dementia care. We're talking about when when these challenges, like caring for a loved one with dementia or professionally caring for many, when these challenges come up, uh, the way that we manage our feelings is what we're going to take to the next challenge above and beyond what is going, what you're going through right now. And so that's why this is so important to really sit in it. Yes, yes, this is focusing on this dementia care challenges, which are extreme, but all of this that we're talking about today can be for the other kinds of challenges you might be facing, you know, a relationship with a family member that you're challenged with, or weight loss, or um, you know, another kind of health health crisis. So, you know, this is so exciting that that we can share this and then it's sustainable tools above and beyond.

SPEAKER_02 47:02

That is so true. It it is your brain goes with you everywhere, right? So when we learn that we are creating the emotions we feel, not the things outside of us, not the dementia or the things our loved ones are saying, or our job, or our bank account, or the number on the scale, but the our thoughts about those things, the way we are interpreting those things, causes our healthy brains to release chemicals and hormones, and that becomes a vibration in our body and we see it as an emotion. And when I think I always knew that intellectually, like if you would have asked me, I would have said, yeah, that sounds right, but I didn't know it in my bones, know it until maybe 10 years ago. But when you start to really understand that, you recognize that the world becomes less scary, challenges become less scary. Because when when other things outside of us are causing our emotions, we have to wake up every day and hope all the pieces fall in the right spot and people say the right thing so we can have a good day. When you when you realize that would be great if that happened, and it would make it easier for me to feel the way I want to feel. But ultimately, I choose what I think and believe and how I feel. And that doesn't mean we won't feel negative emotion, and you will feel negative emotion as you go through this dementia journey. If you care about this person, you will. If you want to do this well, you will feel negative emotion, but you will choose it, and those emotions won't be so scary because when you're tired of feeling that emotion, when you're ready to get motivated and committed and feel love, whatever emotion you want to feel when you're ready, you can find new believable thoughts that make you feel a much more useful emotion when you're ready. It's all up to you, and it's it filters out to every part of your life, right? Once you get good at that, then you can utilize that in any part of your life. And so to me, any challenge that you go through, learning to manage your thoughts and emotions is life-changing.

unknown 49:24

Right.

SPEAKER_00 49:27

Another good example of that, Joe, is that you were your brain was already um in a spot where you had realistic expectations about what dementia really was. I can reckon you didn't have to get there first. So that that really helped you to be a better caregiver, even though you were still struggling. So um that's that's the part of the education that um dementia awareness brings. And then and then it's the how how should I feel about this? And if I feel this way, is that okay? That's the part that um Jocelyn brings to us to make you that perfect example of um that you know, a gold star caregiver, right? Thank you for being our example, Joe.

SPEAKER_02 50:24

But the number one thing that that makes it harder for caregivers, that they do to themselves that make this harder is they judge themselves. And that makes it so much harder to show up for their loved one and for themselves. And the reason we we all do that, and the reason we do it is because our brains, our healthy brains, are tasked with keeping us alive. And the way that they do that is they're constantly scanning for trouble because if they can recognize a potential problem, then they can come up with a solution and keep us alive. We love our brains for that. It's how we've evolved, it's why we don't still live like cavemen lived. We love our brains for that, but uh they are always looking for trouble, and so many times they think there's a problem when there isn't. So we have to be onto our brains and recognize sometimes that's very helpful, but other times we have to let our brains know that's actually not a problem at all. I didn't do that wrong. It doesn't matter if that person doesn't agree with me, little red flags that our brain throws up at us. We have to be the boss of it and recognize settle down, brain. There's not a problem here. I'm doing a really good job.

SPEAKER_00 51:46

And and Joe, you are such a good example of that. And I know you and I talked about, you know, your your dad has passed, but you know, just that punch in the gut that grief brings us, you know, and how that, um, you know, like I said, we I think we need to have part two and talk about all of those feelings that that you're dealing with even still today. But, you know, we were talking on the phone and and I was, I just admire you so much because you were able to verbalize that. You said, this is much harder than I thought it was gonna be, and how great that that we are learning um from the inside out how these um how this feels, how this plays out. So if there was one thing, one sentence, one paragraph that you could tell our listeners about how you you wish um things could have been different, how how um something that that you would like to get that that little nugget of of, you know, if this would have been different, it would have made it so much easier. Is there something that you could kind of close out for us, Joe? And and we'll we'll have you back. We'll do more because I know the listeners are gonna want to know more about your story and and how this is all played out and how um your awareness has helped you through it, even though it's still been really challenging. So, what is that one thing you'd like to tell to someone who's in the midst of this that might help them?

SPEAKER_03 53:33

Well, as we've talked about many times over the last 20 years, um every aspect of dementia care has several different arms or legs or pathways that are attached to it. There's not, I think a lot of people might be of the mindset that once you start down that journey that, okay, I'll stay focused on this and it'll all be okay. And there is not one thing to focus on. And so, as we were talking, I was thinking about the average caregiver, whether it be an assisted living, whether it be a private caregiver that comes to the home, the caregiver, it's not really something that you can learn easily about watching all the different things that are going on. And the person that um one minute is seemingly not even having dementia symptoms. And the next minute you're going down this road and you're thinking, where did that come from? And how do I deal with that? Because it oftentimes comes out of the blue, and and there's so much going on because that caregiver is focused on meals and laundry and cleaning the room, and and and oh, and now by the way, we want you to do activities with them too. And so it's overwhelming, like we talked about. But um when I look back at the the whole situation, what I might have done different, um, I think I would have probably incorporated family members that maybe either didn't understand or didn't care to understand, and thought, oh, it's okay, he's got this, and I don't really need to help. And I think I I probably should have done that. But there again, every family is different. You've got family dynamics that you're dealing with, and there isn't always somebody who can help. In fact, there are those who actually step in and make it worse.

SPEAKER_00 55:29

It's that human connection that that is really, in spite of everything else, it's that human connection that that joining their feelings, because the feelings are what is left, and teaching other family members to do that. We've we've had um some of our other guests talking about that. You know, when you start to practice that, it makes such a huge difference. And that's um kind of the key into their world because it's all about how we make them feel because they have nothing left, they have no, we what we're talking about today is managing our feelings, they just feel them now, and so it's learning to think for them and manage their feelings, and then the other stuff just kind of happens and we learn to let it happen, right?

SPEAKER_02 56:27

I hope you have moments, Joe, where you're just so proud of what you did.

SPEAKER_03 56:32

Because I think I'm getting there.

SPEAKER_00 56:35

I hope so. Yes, I hope absolutely. We just we want to give you that. I wish I had the gold stars that our teachers used to have, that sheet of gold stars, because Joe, we just put them all over your forehead because you're just doing such a good job. And you're doing such a great service in sharing your challenges and how you felt, because I know a lot of our listeners are gonna go, oh yeah, that's that's how I feel too. And yeah, and and what we want to tell all of our listeners is yes, that's being human. You're going to feel these things. That's okay. And it's and thank you. I I like I told Jocelyn, I I knew you would be such a great guest because you are so good at sharing your feelings in such a profound way. So it was perfect. We absolutely, I know we will have many um that will be asking to have you back uh because we learned so much from you. So um I I just want to thank you.

SPEAKER_03 57:41

Thank you so much. This helped, this was a big help. Thank you.

SPEAKER_00 57:45

Absolutely. We're so glad. Remember that caregiving is not just a responsibility, it's a deeply human experience. And you, every one of you deserve support and clarity and compassion all along the way.

SPEAKER_02 58:01

So be sure and join me, Laura Wayman, the Dementia Whisperer, and me, Jocelyn I, certified life coach for dementia caregivers. We are both here to remind you that you're not going through this alone. Your emotions are valid. Whatever you're feeling is exactly what you should be feeling right now. And your resilience is real. I know, and Lord knows that some days you probably feel like you're sinking. And on better days, you feel like you're barely floating. We are here to teach you to swim.

SPEAKER_00 58:34

We wish you calm seas and gentle winds on your Dementia Care Journey. And we want to welcome you back next time and every time as we continue exploring the truth, the tenderness, and the transformation within this caregiving journey. Thanks for listening. Please like, subscribe, and leave us a review.