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Detective Mindset for Dementia Behavior​
with Melissa Smith-Wilkinson &
Dr. Natali Edmonds
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Dr. Natali joins us to talk about some of the biggest challenges that caregivers face and simple ways to overcome and persevere. She is a board-certified geropsychologist whose mission is to help family members cope with the challenges of caring for a loved one with dementia. She posts weekly videos on her YouTube channel addressing common struggles and questions. The channel has been viewed over 4 million times worldwide.
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Melissa Wilkinson
Hi, welcome to the Caregiver Wellness podcast, excited to have you here with us today. This is probably one of the most jam-packed podcasts that we've had thus far. So, our incredible guest, Natali Edmonds! She is with Careblazers.com she's got an incredible YouTube channel, it's Youtube.com\DementiaCareblazers and it's fantastic. It is an incredible wealth of information and resources and I want to point you in that direction.
Melissa Wilkinson
She also has a fantastic guide that you can download for free when you go to her website, Careblazers.com. So in today's episode, we talk about why she started Blazers and what the blazer part means and I think it is incredibly poignant. She's a geropsychologist! So, what exactly does that mean? And what are some of the other practitioners which can help you diagnose dementia or Alzheimer's? And who do you need to see for aftercare?
Melissa Wilkinson
She's really specific on this. What are the best self-care practices? How do you do reframing and how does gratitude actually work and why? She also goes into what your mindset should be, and she calls it the detective mindset. It is so important to use this detective mindset well before you try a behavioral technique and this is going to translate to everything that you do in your life. I thought this was just a really incredible part of our podcast. This is toward the end.
Melissa Wilkinson
Can the person that you care for with dementia remember the feeling of an experience? They may not remember the experience, but can they remember the feeling of the experience? I'd love to know what you think about that and Natali expands on that quite a bit. She also goes into detail about what a caregiver's greatest strength is, it might surprise you. Lastly, we talk about the differences between hallucinations, confusion, and anxiety in your person with dementia.
Melissa Wilkinson
It's probably one, again, one of the most jam-packed podcasts that we've had thus far.
And then, well, I'll just let you experience it. We're so glad that you joined us today. And if you're willing, you can look below here and you can see all the links to it. You can also sign up for our newsletter to get exclusive invitations to listen in on Zoom and ask our guest speaker questions yourself. And I think that's a really special part of what we call a community gathering. And we're so happy you came to join us today and let us know what you think about the podcast.
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Melissa Wilkinson
I've been following you for a while now and sort of you and Teepa Snow are like my go-tos for all of these complex questions in regards to behavior.
Melissa Wilkinson
I know we've already had a question from a caregiver, which we'll address shortly about, you know, what do I do? I think you probably get that a lot. Folks that are almost beyond the point of frustration and kind of moving in that direction. So we are honored to have you today to be able to share with us your expertise.
Natali Edmonds
And I am so excited to be here. Thank you for having me.
Melissa Wilkinson
I know it's really cool when you said yes. I'm always surprised when people say yes, which I shouldn't be.
Natali Edmonds
Well, I think that people who are in this field are in this field to genuinely help. If they're doing it in this online space, which is very different from traditional models, like I still work for a large hospital system, it's because we're trying to reach more people. This is because we realize the health care system and the way things are set up only really allows us to reach just a few people at a time. Over years and years and years, we're starting to see the same questions, the same challenges, and so many people feeling alone. And we're like, oh my gosh, if only you knew the millions and millions of other people out there that will help you know you are not alone. And this is just a really hard situation. So, I'm not surprised that people say yes, because if you're on this online space, it's because you're trying to reach the people that you just can't see when you have an eight-to-ten-hour workday, ya know.
Melissa Wilkinson
Yeah, exactly. Exactly. Well, I would love to introduce you to you more properly. Natali is a board-certified geropsychologist, and her mission is to help family members cope with the stresses of caring for loved ones with dementia. You have a pretty incredible library on YouTube that you founded and you call it Careblazers. Can you explain a little bit about what is the "Blaser" part?
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Natali Edmonds
Sure. OK, so this name came to me. I had already decided I wanted to find a way to help more family members who are caring for somebody with dementia. Once I had made that decision, it was like, well, what am I going to call it? Like, I need a name. I didn't just want to name it my name. So, I live in Arizona, and I was on a hike with my husband and we had just moved there from Pittsburgh. We we're at the start of a trail and there was this really big sign that said no trailblazing. Right, which basically means creating a new path that's not there. It just, in that moment dawned on me. That is exactly what I'm trying to do for caregivers. Like when you think about how caregiving traditionally is done, it's done with a lot of self-sacrifice, lots of guilt, lots of just feeling like your entire life has to be on hold. It's feeling like you have to maybe drive across town for an hour to get to a support group that you're not even sure other people are going to show up or that it's still running. So, it just felt like I do want to place a new path. That's exactly what I'm trying to do when it comes to helping family members is the system we have now isn't exactly meeting all the needs. So I wanted to create that new path and it just I just stuck with it and Careblazers it is.
Melissa Wilkinson
Well, I love that. I think that's exactly what we're trying to do right now in terms of there has to be a better way. There has to be ways that we can also, because instead of just trying to manage the person that we're with, we still need to be able to take excellent and immaculate care yourselves.
Natali Edmonds
Absolutely, if you are not taking the best care of yourself, and I understand we could talk about all of the challenges that come up with that. And there are really realistic challenges, but it doesn't mean it's not possible. And that's a lot of what my work is when it comes to the YouTube videos and working with Careblazers personally. It's like, how can we realistically make sure you don't put yourself on the back-burner? This really became a passion of mine because I've personally worked with family members who the caregiver, primary caregiver, wound up in the hospital because they just are committing one hundred percent of themselves to working with dementia. And I'm watching their health decline and decline and decline. And I'm trying to talk to them about this is really serious. And actually, you will give better care to your loved one when we can just figure out a way to start also giving some care to yourself. So that's why I'm really passionate about it, because dementia caregiving comes with a lot of risks to the caregiver. If we don't start to try to address those concerns, a lot of times the caregivers health ends up worse than the person with dementia and then who's there to care for that person with dementia. So I think we need to look at both people are important, the caregiver and the person with dementia. Without the caregiver we are in a really scary situation in terms of who's going to care for the person with dementia.
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Melissa Wilkinson
One of the things that struck me and I listened to you and it was excellent, by the way. (And I see Kimma has already put your YouTube link in the in the chat box.) And this is one of our YouTube talks. What exactly are the different roles when you're looking at what doctor does what? So what you do, can you explain more about what a geropsychologist does and why?
Natali Edmonds
Sure. Yeah, so I'm a geropsychologist. It's basically a fancy way of saying I'm a clinical psychologist who specializes in geriatrics. I went ahead and got board certified in geropsychology. Which at the time I got board certified, which wasn't all that long ago, there were less than a hundred people worldwide with the certification. So this is a field that is gaining more interest. But sadly, there's not a lot of people who either got training in how to specifically care for older adults and like all of the things that are involved, that you have to think differently compared to a younger adult. So when it come down to it I'm a clinical psychologist by training and that is the foundation. That means that I am able to do therapy services with people, family members, the person with dementia, which depending on the severity, they can still get benefit from. Also, the unique thing is you can do cognitive assessments, like testing. So I had the experience of working in geriatric assessment clinics where I am actually testing the person whose family is bringing them in, suspecting maybe they had some dementia. And so kind of trying to decide, is this normal age decline? Is this actually a dementia process? Is it somewhere in between, like mild cognitive impairment. And I am also involved in a geriatric driving clinic where we would assess an interdisciplinary team? Is this person able to continue to drive safely? Talking to family members about important issues like are they safe to live alone? Are they OK to manage their own health care? So it's really just looking at all of the big encompassing issues that pertain to older adults and the family members caring for those older adults and how we can help them. Whether it's more direct kind of therapeutic therapy or assessment. And you can do it individually, you can do it in a group. There's all kinds of different ways. But for very good geriatric care, you're going to be working in an interdisciplinary team. Meaning the majority, well actually every single position I've ever held in a hospital working with geriatrics, you're going to be working with a geriatrician. Which means an M.D. who can help with just the medical conditions involved and medications that they might be on. Preferably a social worker to talk about what are some resources that could be helpful that are in the community that maybe the family doesn't know about? Things like adult day health care, occupational therapy, or physical therapy which is super important. Just how do we keep this person functioning? How do we keep their muscles going? How do we make sure we can optimize our quality of life? And there are so many tools that are available to help them keep their independence. So they're really great to have. Speech pathology is wonderful because they can also do a little bit of cognitive assessment. They can also assess swallowing and they can really help facilitate communication with family members. Like if the person with dementia, sometimes the brain is having a hard time communicating what they want to say. And also the brain might be having a hard time understanding what family members are trying to say. So speech pathology can really tease apart where is the breakdown and how can we improve communication with this family member. Pharmacy is really important because many of the older adults that we see have, you know, there on over like ten, fifteen, sometimes twenty medications. And those are going to interact with one another. Those are going to have some impact. So having somebody take a look at what is absolutely necessary, what do we need to do here? Sometimes psychiatry, if there are some behaviors that are so significantly impacting quality of life and after trying all of the non-medication approaches, there are still a lot of challenges. Then psychiatry can be helpful in that purpose. I mean, I can go on and on with all the different amazing providers. Recently, the last two weeks I believe, on my YouTube channel, I did one video on the people who are the three top docs that are going to be involved in diagnosing the dementia. And then the next week was about five of my favorite providers, that could really be helpful in dementia care. And it's just this information isn't so easily, readily available if you don't know, unless somebody tells you.
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Melissa Wilkinson
I feel like sometimes it can be really overwhelming, most probably just go to their primary care physician, and then they don't realize all the other resources that are available. Or perhaps they don't have the time or energy to navigate how their insurance can take care of the other resources that are available. And so I will tell people that as you're listening to this, I listen to both of those and they were excellent. Very succinct and super clear on how and which ones were valuable and for what. So I'm just going to keep pointing people in that direction of your YouTube, because it's free information and it's excellent.
Natali Edmonds
Yeah. Thank you, I appreciate that. The other challenges, even if you knew all of the helpful information, there's so many. Once you know a piece of information, it often opens a door of another challenge we have to face. So it's like let's say you decide, oh, my loved one really would benefit from a physical therapist. It's like now how do you get your loved one to go? Because a lot of times maybe they don't want to leave the house or they're not wanting to go to a health care provider appointment. Right. Maybe they remember the last appointment where they were told they couldn't drive anymore and now they're going to never go to another hospital again. So it's just kind of like one challenge after another, and I do have a video on how to help your loved one get to, or encourage them to go to a doctor's appointment. So there's a lot of things and I think it's important to get kind of bite sized information. It's like, OK, I have this information, what do I want to do with it? What's my next question? What's my next challenge? How can I approach it? And I do think there's a lot of success people can have, but another kind of qualm with the traditional health care setting is, if you're lucky, you might get an hour appointment, you know, for once every six months or once a year. And so you're trying to jam-pack everything into this one appointment and your mind is already so overwhelmed with just trying to get your loved one there. Trying to battle traffic to get there, sitting in the waiting forever, getting to the appointment. The health care provider is going to have their agenda of everything they're trying to cross off. That by the time you leave the appointment, you're like, oh wait, I didn't even get this answer done. I didn't get this. Or what did they say about this? You know, if it's a really great clinical they'll write it down on a piece of paper and give you what you talked about. A lot of times that doesn't happen. So just being able to have a place to go and not just me. Like you mentioned, the Teepa Snow, which is really great. Your site is really great. There's a lot of great services out there. So it's just a matter of ok. I'm a firm believer we have to be our own advocates, even though people who get into the healthcare profession get into that profession truly for the most part to help. There's a lot of roadblocks along the way to really allow us to help in a way we want to. So it's up to you to kind of say, okay what's next? What do I need? How can I get this information? And luckily, we live in a time where a lot of it is online.
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Melissa Wilkinson
Yeah, absolutely. Well, you know, when I listen to you I can feel myself getting a little anxious because there is a lot. So my question for you, because one of our main goals and missions, as caregiver wellness retreat is, is to truly reflect back the care of the caregiver. So I'm really curious, what do you do, and I heard you say hike, but what do you do for your own self-care?
Natali Edmonds
Definitely outdoors. Hiking is a big one. I used to be a big runner. I still run here and there and do some half marathons. Back in the day running long distances was great, but for time reasons and just energy reasons, it doesn't happen so much anymore. I do love hiking in Arizona. We have beautiful trails and also I have a dog who is very helpful and therapeutic for me, so I can just look at my dog and feel better. But this is something I'm really passionate about because a lot of times people think like self-care has to take up so much time. Well, what if you don't live near trails or what if you don't have time to go on an hour walk, right? It can literally be just practicing being in the moment, which I try to do often. I remind myself of this. I'm not great at it a lot. Last night I was in a yoga class. So, I do like to do yoga too, but my mind was wandering everywhere. And you can do this whether you're in the shower, whether you're washing dishes, whether you're trying to help your loved one with some sort of care task. It's just being in the moment. As a psychologist, what we learn is the way that we feel. So if you say you're feeling anxious, the only reason you're feeling anxious is because of the thoughts that you're having. So you're having a thought. This is so overwhelming. There's so much information and that's leading you to feel anxious. So you have to start to get really clear on just what's going through my mind right now and we're not taught a lot. We kind of think outside circumstances create our feelings like we think having a loved one with dementia leads us to being overwhelmed, anxious, depressed. We think having all these doctor's appointments makes it so that we're frustrated and all these things. And most people would say, oh yeah, that makes total sense. Right? It makes total sense with me saying it out loud. But when you really break it down and that's why I think psychology can be so helpful. Well, let's take a look at your thought because if you want to feel anxious, it's totally ok to have that feeling. And by the way, there is nothing wrong with feeling anxious. I think the thing that makes us feel so much worse than we probably want to be feeling is this idea that we shouldn't feel anxious, we shouldn't feel stress, we shouldn't be sad, we shouldn't... And it's like we're human so these emotions are just going to happen no matter what. But starting to learn that "oh, I see that my thought right there led to that", right? That's so important! And then from there, what I teach people, I have a care course and what we go through in there is like, what do you want to do about it? We can stay there and that's okay. And I think there's so much benefit from just not beating yourself up and that you're a human with emotions. Right? We're not robots. But then also, how do you change it? Do you want to change it? You could think the thought "how wonderful is it that there are so many options for me to choose what kind of direction I want to go in care?" That could be a thought. But it's important that whatever thought you believe if you're trying to change it, is believable to you. We can't just think, "oh this is wonderful, I'm so glad for this." Right. That's fake, that does not work.
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Melissa Wilkinson
Realistic reframing.
Natali Edmonds
Yeah, for sure. So I'm kind of getting off on a tangent that we can go on forever. So I'll try to come back to your question in terms of for self-care. So getting over the three common barriers for people doing self-care. I don't have enough time. I don't have enough extra money for self-care. I don't have any help. Self-care can literally be done right in this minute. If everybody just took a deep breath. If everybody in this minute just took a moment to be present and realize where are my feet right now, what am I sitting on, can I feel that? Like we didn't notice that till just now. What sounds am I hearing? What am I seeing? Right. When you are fully present in the moment, it's really difficult to be super anxious or super stressed because you're just in the moment. All of those feelings start to come when we get back in our head. What's about to happen now? Is my loved one going to come around the corner any minute? I'm going to have to get off this call. Oh wait, after this I have to go get... That's when we start to get a lot of that anxiety. So just being present, deep breath. I'm a big fan of meditation. I know some people aren't that big of a fan, but you can literally meditate for two minutes. And it's not like I'm just saying that because it sounds like a popular thing to say. There's so much research that meditation can be helpful and you can literally pull up a YouTube free meditation. You can just set down your phone and not listen to anything. You can just breathe. I also think gratitude is really important. I don't think it, I know it based on what the research says, just practicing gratitude daily. I have a daily gratitude practice where I physically write down three things I'm grateful for every day. A couple of things that trip people up with this is that they feel like they only have a few things to be grateful for. And it's the big things like I'm grateful for my house, I'm grateful for my family, maybe I'm grateful for my health. Right. And they kind of feel like it's the same thing over and over.
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Melissa Wilkinson
I am grateful for Coffee.
Natali Edmonds
Yeah, coffee that's exactly it. Like what are the little things? And I always like to ask caregivers if tomorrow, like things that you weren't grateful for just disappeared, like what would you all of a sudden miss? Like if all of a sudden tomorrow things disappear that I wasn't showing gratitude for, like I'm all of a sudden going to miss my toothbrush. I'm going to miss my airport. I'm going to miss clean water.I'm going to miss the grocery store. I'm going to miss Amazon delivery. I'm going to miss the Internet. I'm going to miss Chapstick. I'm going to miss clothing. I'm going to miss the sunlight. When you get into that mindset, it's like woah there's so much to be grateful for. And none of these practices is meant to make you feel happy right away. It is a lifestyle you start to incorporate. So really long winded answer to say I do trailwalking, yoga, meditation, gratitude and try to practice being in the present moment as much as possible all the time. And those are things that are free. They don't require any extra help and for the most part, don't require any extra time.
Melissa Wilkinson
Yeah, well you know so the last thing you mentioned was also the first, that being present. It makes me think about one of our first questions. Robert, he had asked a question about his wife. She doesn't want to when he needs her to do something, a specific task, like go to the bathroom or could be something else, could be anything. And she was this set for a period of time. How, and I know what my response would be, would be I almost feel like our perception of what we want the other person to do is part of the anxiousness, because we have. Right. So how can we shift that? What are some techniques that he could utilize in the scenario.
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Natali Edmonds
Right. So I'd be happy to talk about techniques. First, I want to just talk about the mindset you have to be in. So a lot of times when we want somebody with dementia, or we want our loved one to do something, and they're not doing it we get really frustrated right away. Any time our frustration goes up, that's going to make it even that much more difficult for your loved one to comply, because the person with dementia is basically picking up on your non-verbals, on your energy, on the way you're approaching them. So number one is just something I like to call the detective mindset. So Robert mentioned that he has a hard time getting his wife maybe to sit down, lay down in bed, like physically do something he's wanting her to do. So because this is something that's happening repeatedly, I like to say we're going to put on a detective hat and we're going to figure this out. And I truly believe the majority of things we could totally figure out. But if you go into it thinking we have to figure it out on the first try, you're going to get frustrated, stressed, upset, and it's going to be less likely that you're ever going to figure it out. So when you think about like a detective entering a crime scene they're like "whoa this is like a lot." It's overwhelming. What happened here? Who murdered who? Right. And they're going to have a hypothesis. They're going to gather the information, they're going to have a hypothesis and they're going to try to prove that hypothesis is true. And then it's not going to be right. Some things will come back and say, oh that wasn't it. The detective doesn't just give up and say, "well, try to solve that murder but it didn't work." Right. They go back at the drawing board and they say, "Okay I tried that. That wasn't it. Let me try something else." And I love this approach for trying to figure out any difficult dementia behavior, because when we come from the perspective of, all right, I'm a detective. I tried this. It didn't work. It actually made my loved one more upset or resistant. That's great news. You now have information that we could rule out that approach. So I have dozens of videos on my YouTube channel for how to deal with difficult dementia behavior. But in terms of Robert, I would encourage you want to think about what in the world would possibly cause your wife to not want to sit down? What in the world would possibly cause your wife to not want to lay down? Right. And curiosity is such a great emotion to try to channel here. It makes total sense to us to just say, "let's go to bathroom and sit down." We have a fully functioning brain. For somebody with dementia, a lot of times perhaps it's she doesn't remember the mechanics. You might actually have to walk through step-by-step and say, "all right, we're going to walk into this room right now. All right, now turn and face me. That's great. We're going to take two steps back so you get her right in front of the toilet. All right, now I'm going to help you take down your pants." And I always like to say, especially for sensitive items, you want to tell them what you're doing before you do it. And if they're able to do it, she can do it on her own. Say, "all right, we're going to take down our pants now. It's time to use the bathroom." Right. Literally step-by-step. Perhaps that's one of the reasons. It's like we think going to the bathroom is such a simple task, but it's like you've got to find the bathroom. You've got to figure out where to go sit. You've got to take off your clothes. You've got to sit down. You have to realize you have to empty your bladder. Like, sometimes people stand up right afterwards. So then what can you do? So you have to figure out where in the process is the challenge. Is the difficulty getting her into the bathroom or getting her into the bedroom? So that tells you we have to do a different approach. Is the difficulty she has no problem getting in the bathroom and getting into the bedroom, but the difficulty is actually getting her to sit? Ok, so now we might be into the mechanics. Maybe she knows how to do that mechanics and she'll sit down, but then she gets up right away. So it's like, okay, that's telling me that she's not quite sure what to do when she gets in that position. So I have to be there to talk her through "we're going to sit here for about five minutes." All right? You could give her something to hold. You can talk to her. You can lay down in bed with her. Right. So there's no shortage of possibilities of what could be going on with your wife here, Robert. And I wish, like right now, I could say this is it, but we actually have to approach it. It seems like it could be a simple thing, but we have to approach it. Where is the breakdown? Where is the difficulty? And maybe it's all three of those things. And then we can just go step-by-step. We're going to try this. Now we're going to try this. And every single time you try something and it doesn't work, you don't get frustrated with yourself. You say, Okay, I wish that went differently, but now I know that approach didn't work. And above all else, when it comes to any difficult dementia behavior, please monitor your own facial expressions. I know it's so hard, like, you're trying to just get somebody to go to the bathroom and they're not. And so it's hard to kind of hide that, but the more you're able to be in that calm presence, the more likely your loved one will be able to kind of follow through with that. So I don't know if you want to follow up Robert, or anything like that, but feel free --you can chat and I can try to --in the chat box, I can try to respond. But that is my big recommendation-- where is the breakdown and what would make sense for me to address, given that I think this is the challenge?
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Melissa Wilkinson
I love looking at it from a detective perspective. To me, that's really more of a pedagogy of inquiry. You're coming from being curious and more creativity rather than trying to immediately-- it's almost like instead of the demand, or immediately have this expectation of "this is how it has to go every single time," allowing there to be almost some playfulness in there. And the other thing I really appreciated about what you said is how are countenances, how our facial expressions are... I mean, even there, I'm sure you know of the study. There is a study about an infant and I don't remember the name of it. I can find it and post it later, where if an infant's given to a parent and they're completely non-responsive, at first, they're still engaged. But it only takes about three minutes for that infant to become upset, disorganized, afraid... If the parent remains non-responsive. And so I just keep thinking about that in terms of dementia. Yes. Our countenances is critical.
Natali Edmonds
Right. And what I'm thinking, building on that is, so the way we're approaching difficult behaviors --and we'll just stick with the bathroom example in this case --we're trying to get our loved ones to go. It's unsuccessful. We get stressed, our facial expressions know it. Everybody leaves the situation a little bit more on edge. You just reduce the chances of having success the next time. It's like we build on it. So now your loved one might not be able to remember what happened yesterday when you tried to go to the bathroom, but they start to go to the bathroom and they're like, "oh, this is not a good place. This is not a good-feeling place." There's a really classic study like long, long time ago, a French, not a-- I'm calling it a study. Back in 1912, it was with somebody with a serious traumatic brain injury who had no memory. So this person would meet the doctor and every time, every day met the doctor, as if that doctor was brand new-- had no recollection of what was going on. So we would-- sometimes people believe, because our loved ones have bad memory, they're not going to remember this bad experience. And it's not to say like you can't, there is always hope to rebuild a good relationship. That is a lot about what I talk about how to do that with somebody with dementia. But this specific person, the doctor, put like a thumbtack in their palm. So the next time the person with a brain injury came and met the doctor, who the person had met 20 times before and never remembered, they shook the person's hand. The person with the severe brain injury moved the hand back right away because it pricked it and it got hurt. Right. So every time the person is shaking the hand-- this one time the doctor puts the tack in the hand. Of course, we can never do this now with ethics and stuff, but the person got hurt and pulled the hand back. The next day, the person with severely impaired memory, who never remembered this doctor, still doesn't remember this doctor. The doctor puts out his hand to shake the person's hand and the person does not shake the hand. Right. So how can that be when somebody has no memory?
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Natali Edmonds
And it's like, so that's why it's very important however we approach our loved one. And first of all, careblazer's, like nobody's one hundred percent perfect. So we all have to give ourselves grace, but these little things do matter-- when it comes to just our facial expressions and how we interact, because over time that person just remembers the feeling. And this is where a lot of caregivers will say, my loved one seems totally fine when the neighbor comes over, or when the family member who never comes and helps comes for a visit out of a blue moon. My loved one seems totally fine, but why are they always putting up an issue with me? And it's like and it's really hard. It's like, yeah, because you're the person 24/7 with this person. So like over time there's going to be stress that piles up, there's going to be frustration that piles up and they have that general feeling which they haven't got with this other person yet. So that's one of the reasons why we see that a lot.
Melissa Wilkinson
So important to just keep that perspective in mind. You know, there's another concern a caregiver wrote and I hear this comment a lot, and I'm not going to be really specific with it, but just the first few words I'm having to remind my mom. That makes me think back to my dad when, you know, my step-mom was newly diagnosed and he kept saying, don't you remember? And I was just like --finally I just said "Dad you have to change that phrase" that she doesn't. And it took some time for that cognition for my dad to take hold. So how can caregivers, instead of feeling that frustration of needing to remind their person with dementia that they need to do something, how can how can we shift that?
Natali Edmonds
Yeah, there's a lot of different ideas here. And I think the important thing too is to pay attention to how your loved one responds. I always say the way you know, whether you're doing the right approach or the best approach for your loved one is to listen and see and watch their feedback to you. So, for example, if you were like, "hey mom, it's time to brush your teeth." And they're like, "oh yeah, let's go." And it was totally fine, than maybe it's fine, but a lot of times that's not what's happening. And so here's where I would really encourage you to get creative in how you approach the topic. So if the topic is brushing teeth or doing exercises, it's almost like "I'm going to go brush my teeth right now, you want to join me? Or let's go brush your teeth together! Or hey, you know what, I'm going to turn on these exercises. I'm going to do my exercises in the living room right now, do you want to join me?" Or you can do it on a calendar, where you're not saying it -- you're like, "oh look what time it is, today we're doing our exercises. Let's do that right after lunch or let's do that right before we have lunch." Right. So you're doing the same thing, but it's a lot different in your approach of it. It's not like, "hey, it's time to do this, remember." It's more like, "oh, hey, I just realized, look at the time. Let's go wash our hands for lunch. Let's go brush our teeth. Let's go do these exercises." And whatever you can do them with your loved one, that's great, because it doesn't single them out and it doesn't highlight them. And also that can be really great to build the relationship together. You guys are doing an activity together. So that would be one of the ways I would approach somebody trying to remind them several times a day. It's like, how do we just sit down and do this? Also, I would kind of get curious again, put on the detective hat. What might be stopping your loved one from wanting to do this thing? It could be that maybe they just don't have the motivation or they don't want to. But a lot of times it's-- we tell our loved ones, "hey, it's time to do your exercises," and then we just expect that they'll do it. A lot of times people with dementia have problems initiating. So it's like, you might have to get them started. You might have to walk them through it. You might have to do the first step with them.
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Melissa Wilkinson
People without dementia have a hard time initiating.
Natali Edmonds
Yes! True, yeah, one hundred percent.
Melissa Wilkinson
Who wants to go and do their exercises willingly?
Natali Edmonds
And I think that's a really important point because it's just like realizing in the end we're all human. And the things that they might have struggled with before they might be continuing to struggle with. And it could have nothing to do with the dementia at all. But yeah, I would really encourage people struggling with this to be creative and how you introduce it, get yourself involved, and play around with maybe a calendar works, maybe an alarm on the phone, maybe like some sort of little sound alarm. "Oh, guess what time it is?" You know like those kinds of things to mix it up. So it's not always, "hey, it's time to do this. Hey, it's time to do this." Especially if you're doing it several times a day. It's like, what that's telling you if you're having to remind your person several times a day-- is the way you're reminding them, isn't a great approach. So how do we want to change it? Right. How do we want to change the approach?
Melissa Wilkinson
And also, right, something may work one day and it doesn't work the next day?
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Natali Edmonds
Right. Yes. Yeah.
Melissa Wilkinson
So kind of, being again, back on the caregiver to be flexible.
Natali Edmonds
Yes. I think that's one of the greatest strengths any caregiver can have, is just to: Number one, be flexible and number two, have compassion for yourself. Because we're going to slip back. We're not going to know how to do everything great. And you shouldn't be. Nobody's taught you. Have any of us been taught about like "hey, a family member might have dementia; you're going to be faced with all these problems; and here's how to handle it." No, like how are we supposed to know to do all of this? So being flexible and having compassion for yourself are probably my top two traits I would wish for every careblazer to have.
Melissa Wilkinson
Yeah, well, there's another question before we wrap up the podcast segment here. And it was in regards to dealing with a person with dementia who has some confusion, some hallucinations, and anxiety. So how much do you go along with it, on their own thought or belief patterns, or how much do you try to not agree or explain? So, do you join their world or do you kind of continue to try to explain what's real?
Natali Edmonds
So if we're talking about true hallucinations or delusions, --like a hallucination could be visual, could be auditory. A lot of times in dementia, it's like a visual hallucination. They see somebody, maybe it's a little kid, maybe it's a bug, maybe it's a person in the home. Their brain is literally seeing it. So like, even though it doesn't exist, you telling them it doesn't exist is actually going to make your loved one more upset, make them more resistant, and worst of all, possibly start to get them to mistrust you and start to think you're not on their side, which is going to create more strain. So if your loved one is having a visual hallucination, they're seeing things that aren't there, a really great approach here would be to say, "oh, you see somebody, somebody is right there? OK, you know what, I'm going to take care of it. Let's walk over here" and you know, bring them to another area of the room, give them a glass of water or something. Then say "I'm going to go take care of this for you." Right. Because you're removing them from the situation that they're in. You're not telling them that they're wrong, because they're not. Their brain is see this. And in that way, you really are joining their world. It can be incredibly frustrating for that person if they know that they see something right there, and you're saying it's not. The other point of this-- and I wasn't sure based on this person's question, but there are delusions. Right. So delusion is a very strong, fixed belief that they believe is happening no matter what evidence you give them to the contrary. I have a black pen here and they are going to say this is a bird, right? "No, that is a bird, and it's coming through the house, and it's it's creating holes in the wall, and the house is going to fall down." I don't know, a random example, but the brain is believing something that's totally not true. I can sit here and say, "actually, this is a pen, it's black." "See look, I made a mark, it makes a mark, birds don't make a mark. Here's a picture of a bird." Right. You could do all of that and a lot of times it's the same thing. They are still --it's a belief that they are just not going to change. Now in hallucinations, you can prescribe, like a psychiatrist preferably, can prescribe some antipsychotic medications to maybe help with that. Delusions don't respond so well to the medications. And so, you want to try to find a way --so many people just want to move on. No, that's not-- let's move on, like we want to get them out of this situation as much as possible. But it's OK to-- I think it's really important to just acknowledge and validate what that person is believing. "Yeah, you feel like that's a bird. The bird is hurting the home. What are you worried is going to happen with the home? Oh, you know what? I'm going to make sure that never happens. We're going to have a safe home for as long as we're together. I'm going to make sure we have the safest home possible." Like you just comfort them. And a lot of times Careblazers will think, "well, I did this and it worked in the moment, but then the next day she did the same thing."And it's like, yeah, so you do the same thing. Whatever way they're responding to you that doesn't amp them up. If you were able to redirect them eventually after giving them comfort, after acknowledging what they say, then you just do it again. And I like to use the analogy of "everybody probably ate something today, but we're going to get hungry again later." We never for one minute question whether eating works, right? So we got hungry again and we don't say, "well, I'm going to not eating, eating clearly doesn't work." I encourage everybody to have that same mentality when it comes to difficult behaviors or reducing your stress level. It's like your loved one is going to have another difficult behavior. And whatever success you had yesterday, you can do the same thing. It doesn't mean what you're doing isn't working. It just means it's time to do it again. And then one last caveat, I will say, there are some people you can try --you can just say, "oh no mom, that's a pen." You could just do that. And if they respond OK to it, then, you know, for now I can just tell her. But for the most part, if it's a true delusion or a true hallucination, you absolutely want to join their world.
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Melissa Wilkinson
And I think this goes along the lines with loved ones that are long passed, and they still feel that loved one is there. Similar, comfort, acknowledge, and then redirect.
Natali Edmonds
Yeah, and redirecting would be really great in that situation. Just like, "you know what, I think I have a photo album over here. Let's look at these pictures. Oh, she looks so beautiful there. Do remember this day? Tell me about your wedding." Like you can just --it can become a really beautiful point of connection when we're not so worried about getting them to stop believing whatever it is that they're believing. And I think another really hard thing for a lot of caregivers is that --your loved one with dementia is going to feel pain, sadness, and grief, just like any human would. And we can be the best absolute caregiver possible, and it doesn't mean we're going to be able to protect them from that pain or grief all the time.
Melissa Wilkinson
I think that is such a really, really important note to remain open and vulnerable in yourself because they see that and feel that energetically, whether they cognitively understand that or not. Well, I'm going to wrap up our live segment. So if you're watching us live on Facebook, I'm so glad that you did. And I hope that next time when we do our community gathering that you'll also consider joining us on Zoom because we'll have a little extra time with Natali for some questions and answers. For those that have joined us on Zoom. You'll also be able to catch this on our podcast as well. So I'll say goodbye to those that are on Facebook. And thank you so much for joining us there.
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Melissa Wilkinson
Thank you for joining us today. You might agree with me, that was a pretty incredible episode and just so full of richness and depth. And I'll encourage you to go on over to Careblazers.com and get your free guide from Natali. I think she's not selling anything. It's truly free-- YouTube. All of her videos are accessible at no cost to you. And she is just an incredible resource. We're really honored to have had her today. So if you enjoyed this episode, you could do us a huge, huge favor by either sharing this episode or giving us a five-star rating on whatever resource that you're listening to and listening to this podcast on.
Melissa Wilkinson
And of course, everything that we offer is free. So if you have an opportunity to donate, or to give back in some way, we would love for you to do that at CaregiverWellnessRetreat.com, Caregiver Wellness Retreat.com. And you can also sign up for future episodes to be a part of the audience. So you're not on camera. You just listen in to the interview, then we actually turn all the recording off and you have exclusive attention with our speaker to ask them questions that are relevant to you and relevant to our whole community. And I'm really, really excited about this opportunity to do that. You can also find out, or get additional resources when you sign up for instant access, either Santa Fe or Houston. And I think that you'll find those incredibly beneficial as well. Thanks for joining us and we'll see you next time.