A Better Dementia Journey-Interview with Amy Shaw

Welcome To Patty’s Place

SPEAKER_00

0:16

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I named this in honor of my mom, Patty. Uh, I'm your host, Lisa, so we will talk about all of these things as well. And hopefully you won't feel so alone today. So grab your cup of tea, your cup of coffee, or a glass of wine if you're having a really bad day. And today I'm very excited. We're gonna talk with Amy Shaw. She is the founder of betterdementia.com, and she's a dementia clinician, educator, and author of several books, I believe. Is that correct, Amy?

SPEAKER_01

0:50

Um, one that has been published to date and one that we'll be publishing next year.

Why Dementia Education Changes Everything

SPEAKER_00

0:55

Okay. So we're gonna talk about I'm I'm very excited to talk about this. So um why do you think understanding dementia changes everything for families?

SPEAKER_01

1:07

It is the foundation on which families really navigate a very confusing journey.

SPEAKER_00

1:13

Yes.

SPEAKER_01

1:13

Dementia is one of the most complicated journeys of aging, and families are often navigating this journey without a map. That's very and what is happening next, it all just feels very chaotic and scary.

SPEAKER_00

1:33

It it really does. It really does from experience, because there is a lot of information out there, but yet you don't always know where to find it. So what would you say? What what do families wish they had known earlier about the dementia journey?

SPEAKER_01

1:50

Many of the families that I work with, after I've provided them my educational framework, tell me, and also I teach strategies that align with where a loved one is in their journey. They say to me, Amy, I wish I had met you years ago. Because they have been navigating this, again, this very complicated, emotionally heavy journey, often, in a way that many caregivers do. They treat their loved one as though they haven't changed.

SPEAKER_00

2:20

Yes.

SPEAKER_01

2:21

And until they understand what is changing in their loved one's brain, kind of like if you knew that somebody had a broken arm, you would not ask them to carry the groceries in, right? Right, right. And essentially, dementia is breaking different regions of the brain. And when caregivers understand that, they can work backward from behavior to brain and understand where they are in their journey. And then they can align with that. And it doesn't make the disease change, but it makes the caregiving journey change for the better.

Why They Cannot See Decline

SPEAKER_00

2:58

I would agree with that a hundred percent. Uh uh, I know with my mom, well, my mom didn't get diagnosed till very she was already moderate to severe. She just she refused to, I tried to get her go to the doctor, but she just she just refused to do it. Um, now looking back, because then I did research on at the Alzheimer's Association website and things like that, realizing that was part of her dementia journey. She she wasn't in denial, that was just that part of the brain. Can you talk about that a little bit? Because once I began to understand that, for lack of a better term, that her brain was dying. You know, different parts of her brain were shutting off. I I could understand it better. Can you talk about that a little bit to help people understand? Because you can't see it. You know, it's not like it's not like you know, when you have a terminal illness, you know, people understand cancer or they understand uh those those types of diseases, but dementia, they they don't get it.

SPEAKER_01

3:57

So you know, dementia is unique in that that way. I have helped people who are um getting to the end of their life with all of the diseases that you've mentioned. And the reason that I got involved in helping families with dementia was this very issue. Dementia is unique, it does not show itself. In fact, I often say people with dementia do not go around waving their memory and cognitive incompetence flag, right?

SPEAKER_00

4:24

Right.

SPEAKER_01

4:25

There's actually reasons, the the structure of the brain, its architecture, um, does not have a sort of a safety valve in there that says, hey, I'm failing. And so people who are experiencing cognitive losses in different regions of their brain, there's really no feedback to provide them with that insight. And so what caregivers see is very different from what the patient with dementia, the person with dementia, experiences. They literally cannot remember sometimes that certain things have happened, like car accidents or getting lost in a grocery store, right? And if it didn't happen to you, then how could you be informed by an experience that did not happen, right? Right. And once caregivers understand that that person's experience of their life is so vastly different or can be so different than our experience, they can move from compassion just in the same way that when we see that somebody has a broken leg or broken arm, we are compassionate toward them, right? We don't ask them to carry the groceries in. So what I teach caregivers is all rooted in uh brain anatomy. Um, I studied a field called psychobiology, okay, which is how the architecture of our brain results in our behavior.

SPEAKER_00

5:50

Okay.

Patterns In Dementia Beyond Stages

SPEAKER_01

5:51

Study child development, language acquisition, um, primate behavior, and humans are a primate. Yes, and how we organize right into society and families and relationships and all of that. And it really has come in handy because dementia is um all of that brain development in the unraveling of it. And so when I work with families, I help them understand the different regions of brain and the different cognitive or physical or emotional or memory functions those regions are responsible for, and how failures in those regions show up in our daily lives, and very importantly, how different regions of cognition and brain function underpin our daily living tasks.

SPEAKER_00

6:44

Okay.

SPEAKER_01

6:45

And then we can identify from the failures that we are seeing in our loved one. Oh, we are here in this journey. Dementia often feels very unpredictable, but it is not. There are patterns to dementia. And when we think about the different regions of brain and how they fail, um, it's actually rather, I don't want to say easy, but it's not as complicated, I think, as a lot of these staging systems that talk about mild, moderate, and severe.

SPEAKER_00

7:20

Yeah.

SPEAKER_01

7:21

That language is very vague for families.

SPEAKER_00

7:24

It it really is, because uh trying to understand like where where my mom was. Well, by the time my mom got diagnosed, they said she was in moderate to severe, which I could believe that because I had noticed years before different things that were happening with her. And at that point, she didn't know who my dad or I were. You know, that's when I was like, okay, we have to do something here, you know. Um but when you were talking about that, when my mom towards the end, when we had hospice come in, the hospice nurse explained it, like, you know, different sparks of the brain would shut down. And she felt my mom was highly unusual because my mom was very mobile given the stage of her dementia. And it I witnessed it that day. My mom was in the bathroom, she was standing at the counter, uh like at the sink, and all of a sudden, it like the brain shut off and she couldn't make those turns anymore. You know, she couldn't figure out how to, you know, and the nurse was there luckily that day, and she's like, yeah, she's like, we're gonna have to get the wheelchair, we're gonna have to do that, you know, that that part has finally, you know. And it is true, you know, a couple things. One, it always makes me so angry when people are dealing with dementia patients and they think they're doing it on purpose.

SPEAKER_01

8:42

Sure, yeah.

SPEAKER_00

8:43

It it it it does because I'm always like, they're not doing this on purpose, you know. Yeah. And I don't know how to break that for people to help. I I think part of it is from the caregivers because it's so hard to let go of that person you knew.

SPEAKER_01

8:59

It is, it is, and one of the the things that I help families understand is that when you're not moving from a place of accurate understanding of what is happening on the dementia journey, we humans are sense makers. We always want to live in the why, right? Yes, and in the absence of understanding, we still explain things. And so, just like you said, I work with lots of families who I listen for this misunderstanding and this mistranslation, and it comes out in language just like you said, my person is lying to me, they're manipulating me. I don't know why, X, Y, or Z. And when I help provide that education piece, right, to help them understand what the brain is responsible for and how it shows up when it fails, they can then move from, oh, that actually isn't their fault. They are still functioning with a brain that is still doing its job for that person, but without some of the structures in place anymore that they had years ago. One of the things that's really um uh seductive, I guess, about the dementia journey is that your person still looks like the person you've always known. Yes. Right? Yes. When we interact with children who are growing up, we have a visual cue of their cognitive sophistication and their cognitive abilities. And on the dementia journey, we don't have a convenient guide, a visual guide like that. And so families, caregivers really often treat their loved one as though they are the same mother or father or spouse that they have been, that they have known their entire lives or have been married to for 60 something years. And that's why this journey is so counterintuitive. Right. And until we understand what is breaking and when, so that we can align with those failures, um, it's really very counterintuitive for families. Families often have to learn the hard way through a lot of trial and error. They often become the bad guy in the relationship because they do have to step in and navigate and manage certain aspects of daily living to keep their loved ones safe. But they're doing it in a way that they've always interfaced with this person, and that doesn't work anymore on the dementia journey.

SPEAKER_00

11:31

No, it doesn't. My dad, it took my dad quite a while to understand. And he finally ended up saying he was trying to be logical to an illogical problem. And I'm like, yeah, you you have to once once I understood, I was like, you you have to enter her world, you know. Like my mom, I I tell the story that my mom always thought my dad was stealing her money. You know, he he wasn't, and I know that's very it's very common in dementia. And my dad even like wrote out this whole like piece of paper for her to explain it, and I would explain it to her, and she still would wouldn't believe it. And what worked was I would tell her, don't worry about your money. I live across the street from the bank, me and Annie, her dog, we could go get your money at any time. And that made her feel better. Yeah, you know, sometimes it's the simplest things, you know, for people. And it it is hard because you know, I would look and it was my mom, but but it wasn't, you know. Right. Yeah. And it's so hard to understand that. So how do you like caring for a loved one? How do you balance that managing the work life relationship? Because it it's difficult. It it really is.

Early Warning Signs Families Miss

SPEAKER_01

12:45

It really is. The caregiving journey, um, which becomes a caregiving journey much earlier than most people expect, and that I think the medical community really even acknowledges. I want to go back for a second to something you said. We were talking about the mild, moderate, severe, and that your mother's diagnosis came when she was already in the moderate to severe. I suspect, like many of my families that I work with, and even my own family, my mother also has a diagnosis of Alzheimer's disease. And she was diagnosed at the mild cognitive impairment stage. And yet within several months, she started having significant failures in finances and medications that had she been living alone, she could have done some real harm to herself. Oh, okay. And fortunately, my dad is there, right? And I am her primary provider, basically. And our family is fortunate that I know exactly how to translate the failures into okay, what do we do next? And many families experience mild cognitive impairment or even mild dementia as not very mild, right? When families have to step in and navigate their loved one already. And I know myself, I have spent many hours worrying about my mom and worrying about my dad. And I have the framework to understand. If I didn't have an understanding of where she was and what was happening, I can imagine my strain and stress and worry would be exponential. And so the mild and mild cognitive impairment stages can actually be very challenging for families. It doesn't feel mild to them. I'm interested to know what you thought about when your mom was earlier in her journey.

SPEAKER_00

14:47

Well, I had noticed it probably a good five to seven years before she was actually diagnosed. Uh, just little things. Like she would ask the same question over and over again. And if and I didn't, I didn't handle it well at first because I was like, I'd be like, you just asked me that, you know. Or my mom and I would would watch TV, and my mom was one of those people like she loved mysteries and stuff, and she could usually solve it before the end of it. And she couldn't follow like something as simple as a Hallmark movie. And I was like, Okay, you know, and she was a big reader and she wasn't reading anymore, and she just stopped driving. I I think that she probably got lost. Not that she drove a lot, I think she probably scared herself. So instead of saying that, she my dad had bought a new car and she blamed my dad. She just told him, you know, you bought this new car, it's too big, I'm never driving it. You know. Um so I on one hand, I wasn't surprised when they finally, but yeah, I knew something wasn't right. And and when I came to understand, you know, because you want to put this framework in, like you understand different diseases, like, oh, stage one, stage two. But really, like you were just saying, with dementia, they really go through all of them. And it's really hard to put them in stages because you know, one week they could be like, oh, they're okay. And then the next week you're like, wait a minute, they're hallucinating now.

SPEAKER_01

16:14

Right.

SPEAKER_00

16:15

You know, and it it I think it's a fault, it's false to just believe, oh, well, they go from mild to moderate to severe, because it doesn't work that way.

SPEAKER_01

16:24

Yeah, I that's why my um system, I've really never utilized the mild, moderate, and severe because I don't really even know how to translate that for a family. And my work is primarily to help families navigate this journey. And many families in the mild stage do not experience a mild journey because if their loved one has a type of dementia that comes with, like you said, hallucinations, if they are paranoid, um, if they have agitation, physical or verbal, and the the family doesn't know how to interact with the loved one to maintain their well-being, their dignity, their sense of competence, capability, and control, then their journey is not mild, even if their loved one's failures are only in one or two domains of cognitive functioning, right?

SPEAKER_00

17:21

And my mom got very agitated. Like she the I had to go physically get her because at times I thought, oh my God, like she just like hated my dad, like hated him with a passion. Like she thought he was um having affairs and he wasn't. Yeah, you know, but I was like, I gotta separate you two because I'm scared of what she might do, you know.

SPEAKER_01

17:44

Yeah, those are really challenging expressions of dementia. And often caregivers don't have a way of understanding that psychiatric symptoms, which can happen at any stage of dementia, can range from mild to crisis level. They don't have an understanding of how to interpret these behaviors and how to understand them as uh, you know, just like if your heart fails, you we expect certain symptoms, right? Shortness of breath, chest pain. When your brain fails, we expect certain symptoms. And they can be insomnia or agitation or hallucinations. And without that understanding, often families who have experience with a different loved one or relative on the dementia journey that informs their expectations of this journey. And so they come into this new experience with a new loved one and they're terrified that that same thing is going to happen right with their loved one. And there's so much variation here. But dementia is very predictable. There are cognitive domains that tend to fail in a predictable order. And when caregivers are supported with that scaffolding, it's like having a map. Now you have you're oriented to where you are, you're oriented to the destination. And many families that I've worked with have said over the years, Amy, everything happened just like you said it was going to X, Y, and then Z. And we were prepared because we knew from the start how this journey would progress. And that's really transformative because something as scary as dementia that can be different for every person is really overwhelming if you don't have a map.

SPEAKER_00

19:37

It it is very overwhelming uh because you're feeling okay, you know, you know that your family member is is sick, even if they even if like for my mom, if you looked at her, you would not know anything was wrong with her. Right. You know, so you you're coping with that, you know that they're sick, but then you're also coping with that loss, that anticipatory grief of she's she's not my mom, yet she is. And then you also like I had to deal with my dad too, because he didn't know how to cope with it either. You know, he didn't he didn't want it to be true either. It took him a while to get to that point with it. Yeah. And then you just feel so overwhelmed because you think, oh my god, Alzheimer's dementia, what does this mean? With it, and I think as a caregiver, you do you feel guilt, you feel conflict, you you do get burnt out, you know. Absolutely. Because I know sometimes well, we ended up having my mom ended up going to a memory care facility. Uh because the doctors and nurses were like, they told us we weren't gonna be able to care for my mom at home with it. And I do think for my mom, even though I hated that, it was like it was horrible that I had to do that for her. Um, but I know it was the right decision because she actually got she got out of my house twice in one night. Okay. And she was like, I was literally right next to her, and she ran out the door, you know. Um I think if we had brought people in, I think it would have agitated her more if we kept her at home. Because again, she thought my dad was having affairs and he wasn't um with it. Um but you do, you feel this guilt that absolutely you know. So can you talk a little bit about that with the caregivers?

Guilt Grief And Caregiver Relief

SPEAKER_01

21:25

Definitely. Caregivers, I I talk about this heavy caregiver backpack. I run a support group in my town and have um many caregivers who come month after month, and I listen for their pain points, for their points of suffering, right? And there are several common themes to almost every dementia journey from the caregiver's perspective. They do feel guilt, they feel sorrow, they feel loss, they feel frustration, sometimes they feel resentment, they feel anticipatory. Grief, they also feel a very complicated emotion of anticipatory relief. And many caregivers are reluctant to share this, but I want to normalize this for people that if you feel the anticipatory relief that when your loved one passes, your life will be a little bit easier. I always normalize that for caregivers because the caregiving journey on the dementia journey is very, very heavy. And that's part of what I work with families. One of the things that is common and that I hear in your story is that your dad was working from a different understanding from you. And that makes it very challenging. And when I work with families, I invite everyone that interfaces with that loved one with dementia. And we meet, I work with families all across the country. We meet online so that we can all have a shared framework and understanding and experience. And moving in unison in this way from a shared understanding really helps the entire caregiving family journey. And this is a real shift from when I worked in the traditional medical model, which pairs the patient and the clinician primarily in the care, right? We center the patient in our traditional medical model. I realized very quickly I developed the first comprehensive dementia care program for patients in Wyoming. And I was meeting the patient and the family at home and talking about all the patients' failures with the patient sitting right there and trying to educate the caregiver with the patient sitting right there. It was deeply impactful to the patient's dignity and well-being.

SPEAKER_00

23:50

Yes.

SPEAKER_01

23:51

And very quickly, I decided this is not the appropriate approach for the dementia journey. We have to separate the patient and the caregiving support. And so that's what I do in my practice when I work with families. I meet with the patient if they are in Wyoming separately from the pati from the family visits. And that really makes all the difference for the families.

Dignity First And Better Communication

SPEAKER_00

24:15

I would agree with that because they they don't understand what is going on. And sometimes they do get agitated, like, no, that's not true. I'm not doing, you know, I'm fine, or that. And I think like what you just touched upon is how important it is to give them dignity, you know. Absolutely. You know, it to be able to go into their world and give them dignity. Because sometimes I think now back of like, God, that had to be so scary for my mom. Sure. You know, like that she didn't understand what was going on, you know, things that she thought she could do, she couldn't do anymore. You know, something as simple as confusing the TV remote control for the the phone.

SPEAKER_01

24:57

Sure.

SPEAKER_00

24:58

You know, like it has to be so scary. And so to give her, you know, give them dignity with it. And and it's I feel like it is. There's so many different layers because you're trying to understand the patient, but then you have all these levels as a caregiver, you know. Yeah. And I how do you I I know one of the questions I wanted to why do you think that caregivers feel so unprepared for this journey, even when they're very highly capable people?

SPEAKER_01

25:28

Yeah, what a great question. Dementia is not intuitive, it unravels things in the brain that are not visible. And until you have a way of translating behavior back to brain function, you simply don't know what is happening and where your loved one is. On top of that, there are many different aspects of brain cognition and function that make memory and processing unreliable and unpredictable. And so that's another layer of complexity that I help make sense of. And then we have our human brain is so amazing. I mean, actually, I see this in my dog's ability too. She can read the room. She knows when I'm upset or when I'm happy, right? And we humans have developed, we developed this from a young age, from infancy on, this incredible set of communication skills, receptive and expressive communication skills that allow us to read the room and succeed in the social environment. Okay. And this is a very complicating layer of the dementia journey because people with dementia often sound and seem and look like they are still just fine, right? Yes. And that's because we are built with this, we develop these amazing social skills to allow us to succeed in the social realm. And so the social ability, you know, when you talk to your friend on the phone and you're just catching up and you haven't seen them in several weeks, you don't really know if they're telling you the truth. And you don't really hold a friend on the phone to account in the same way that you might with a person who's right in front of you who is telling you something that you think and know to be untrue. Right?

SPEAKER_00

27:24

Yes.

SPEAKER_01

27:24

So phone conversations with friends are a way that caregivers can adapt their understanding to their communications and interactions with their loved one. If you think about how you interface with a friend, you know better than when a friend calls and says, I'm getting divorced, you don't start listing the thousand and one reasons you didn't like their spouse.

SPEAKER_00

27:48

Right.

SPEAKER_01

27:49

You are there to support them in a way that maintains their dignity and well-being and their perception of your respect for them. And so I help with that. And that is the most fundamental and important transformation that caregivers need to make to be able to navigate this journey in a way that doesn't take so much out of them because it's really hard to go through life supporting and loving someone that you think is lying to you all the time.

SPEAKER_00

28:22

Yes.

SPEAKER_01

28:23

That that's that's an impossibility. That's a task that's too hard for a caregiver, and that causes the caregiver to suffer. That's not a comfortable place to be.

SPEAKER_00

28:32

No, and I've seen that with other friends and things like that. And you know, yeah, I I I I would try, but I'd be like, okay, they're just not there. They just and that's okay. I would respect that. But I'd be like, if you just try to enter their world and try to understand they're not doing anything on purpose, it did, it helped, you know, because sometimes I would be able to like I'd go see my, you know, I saw my mom every day and I'd go and I'd talk to her. And sometimes I would laugh and I'd be like, oh, okay. I mean, I I would joke, and sometimes I'd be like, Sometimes listening to two dementia patients talk to each other was highly amusing. And I don't mean that in a bad way, but I was like, no, okay. You know, like my mom believed that where she was at in memory care, she thought she was at her grandma's house. And so that's I was like, okay. And she'd be like, you know, and I was always so grateful that I paid attention to all her family stories. So I could just jump right in there with her, and I I and it and it made things so much simpler. And she also, when she would get upset, she would then you know be like, Don't leave me, don't leave me, help me. And I could calm her down with that. I wanted to touch upon too when we were talking about um people that are highly capable, little things to notice, like usually when person with dementia, it's hard for them to be in a crowd of people, even if they're the family that they know. They get very quiet. And to to be able, what can you can you speak to that and say recognize that and don't punish them?

SPEAKER_01

30:10

But yeah, everyone let me say this a different way. Nobody likes to do things they're no not good at, right?

SPEAKER_00

30:18

Right, right.

SPEAKER_01

30:19

Nobody really signs up for a hobby that they know they have no skills to do, right? Right, right. And so on the dementia journey, things that once were simple for us, like social gatherings, become far more complicated. And it's simply uh a fact that people with dementia at a certain point they can't navigate the complexity in the physical and social world like they could before. And so simplification becomes a very important structural support for people with dementia. And when we align with their capabilities, and sometimes this does mean hard things, like not attending a wedding, yes, not having family holidays in the same way that we did before. Yes, that alignment allows that loved one to still succeed, and that is what honors their dignity and well-being.

SPEAKER_00

31:15

Yeah, my my dad and I we uh this was in like the we were outside with my mom and we had gotten uh my mom used to love the ice cream cake rolls, and so my dad and I had had brought it, I think it was their anniversary, or maybe it was around my birthday or something like that. And so we were outside with her and we thought, oh, this will be good. She loves all this, and she got upset with us. And sure later on, I realized I said to my dad, I oh, we if we're together with her, he and I could not talk to each other. I said, I realized that I could talk to my mom directly, my dad could talk to her directly, but my dad and I could not talk to each other when she was there because she couldn't follow it. So when whenever so a lot of times it was just one-on-one, and anytime like if if her friend or anybody else would come with me, I would tell them that. And then it made for a very pleasant visit with her because I I was like, she's getting upset because she can't follow. Yes, exactly right. You know, and it was something so simple as that, but it was like, okay, let's make this easier for her, you know, and so then a lot of times it was just me or my dad one-on-one, and then it was okay. But it it's all those things, you know, because people are always like, no, we need to do this the same as we always did, but but you can't with dementia.

SPEAKER_01

32:34

Right. The caregiver has to do all of the adaptation, and that is hard because it does mean that you have to alter your world and their world and their experiences and your experiences.

Training Planning Hospice And Transitions

SPEAKER_00

32:48

Yeah, and I think that's probably the hardest thing is the caregiver. It just is. It really is. I want to I want to talk about your um your website. It's betterdementia.com. Yes. And so what are what are some of the services? I know you mentioned it before, but if somebody's interested, what can they uh get from your website?

SPEAKER_01

33:10

Yeah, so I have a free training and a newsletter that um listeners are welcome to sign up for. Families who are really struggling or who want to get ahead of this journey are welcome to reach out to me. I work with families all over the country, and um this allows me to provide the education in my framework, the Better Dementia Journey framework, which is this translation of brain architecture into behavior, and then back into the dementia journey. I teach the communication and support strategies that align with each of these domains of cognitive function that will be failing on the journey. So caregivers are well supported from the start of working with me to understand the entire journey, including the end of the journey, right? The the end, and I'm sure you know this from your mother's experience, the end of the dementia journey is marked by various medical considerations or experiences. Yes. And as a physician assistant, having a background in palliative and hospice care, I help prepare families for all of these medical potentialities on this journey. And that really helps them feel empowered to make difficult medical decisions for their loved one outside of a crisis. That's the best time to be thinking about your values and wishes for a loved one. So I offer that in private consultation with families, but I also have recently recorded my educational framework as a self-paced course that caregivers are welcome to sign up for. And that is purposely built to fit into busy caregiving schedules. No video lesson is longer than 20 minutes. Okay. And it teaches the entire framework, all the stages, the psychiatric symptoms, the medical realities, hospice, how importantly, how to get started with in-home care and how to make a transition to a care facility successfully. Because this is a very important transition point for families. And if you don't do it in a way that aligns with brain function and a person's need to feel confident, capable, and in control, you can very quickly end up the bad guy in your loved one's mind and experience ongoing accusations and you know other hard conversations. So I teach how to do that effectively.

SPEAKER_00

35:42

And I wish I would have had that because um, well, when my mom got diagnosed during COVID. And so we, you know, I I did the research on the memory care, and she we, you know, she went into memory care during COVID. Um in that first night, I can't tell you how many times she called me and she just was like, How could you do this to me? And and all of this, it oh my it broke my heart. They ended up taking the phone out of her room for a little while. But on the flip side, because it was COVID, we couldn't see physically see her for like a good, it actually was a couple months. We could talk to her then on the phone and we could do the window and things like that. So in some ways it might have helped her transition with it. Um and then when we finally got to see her, it was outside visits. And when you were talking about the dogs, I I ended up taking care of her dog, and she was so happy that Annie, the dog, remembered her. Yeah. And that was the only that was the only time she remembered that Annie was her dog. But speaking with pets and stuff, Annie, this little terrier, she was so good with my mom because I would bring her periodically to visit her. Yeah, and she just she was so calm because normally Annie wasn't always calm, but she was so good and so calm with her. So, like that's something too. Bring pets for them. And the other thing that always amazed me, my mom couldn't remember five minutes what she did before, but she could remember all her old songs that she loved. Absolutely, you know, so music is so important, you know, to play because like she she knew the words to my girl. She started singing along, you know. Yes, so those types of things are so important. And the one thing that I did appreciate with my mom in memory care is it was her room, it was all her things.

SPEAKER_01

37:32

Oh, that's great.

SPEAKER_00

37:34

Yeah, yeah, with it. Because that is that's very difficult to navigate as well.

SPEAKER_01

37:38

Yeah, I can tell that you were an incredible caregiver for your mom. You really knew her, you really took the time to um make her world appropriate for her experiences in life, and you got to know her in a way that really supported what she needed on her journey. And that is amazing. Your mom was so fortunate to have you looking out for her in the way that you were.

SPEAKER_00

38:04

Well, that's I I appreciate that. I appreciate that. That I feel like I learned that from her because she was a caregiver, you know, and I know no, no, that she would have done that uh for me. But I just I in the back of my mind, I was always like, Well, I can't fix her, there's no cure, but at least I could give her some peace because that's all she wanted.

SPEAKER_01

38:24

And and I absolutely and I think that the people as when you're caregiving with dementia, if you could kind of think about that like you can't there, you know the way I say it is that the dementia journey will rob your loved one of their skills and abilities, but it will never rob them of their humanity. And the reason that I chose the word better dementia for my business and my book that's coming out next year, and my course and everything that I believe about dementia is that when we understand the what, when, and why, we can align and we can master the how of caregiving in a way that supports our loved ones' well-being and dignity and also supports our own as caregivers. This journey does not have to be all doom and gloom. And if we learn how to navigate it in a way, we all can have a better dementia journey.

Final Takeaways And Goodbye

SPEAKER_00

39:18

I would agree with that 100%. Thank you so much for joining us, Amy. Uh, so everyone can check out your your book next year, Better Dementia, and your website, betterdementia.com. I really, this was a very, very interesting uh conversation. I hope I hope the audience got a lot from this because there's so much more. So much more to talk about with dementia with that.

SPEAKER_01

39:39

Lisa, thank you so much for having me on. I appreciate the warm conversation.

SPEAKER_00

39:43

Oh, thank you so much. So I hope everybody enjoyed this. And so hopefully you enjoyed your cup of tea, your cup of coffee, or if you're having that really bad day, your glass of wine, and you will join us for another edition of Caddy's Placeu.