NANCY TREASTER: Frontotemporal Dementia And The Fight For Clarity

What happens when you know something is wrong, but no one believes you?

In this heartfelt episode of Love Conquers Alz, Susie Singer Carter and Don Priess welcome Nancy Treaster, co-founder of  The Caregiver's Journey, to discuss her husband, Kim Treaster's battle with Frontotemporal Dementia (FTD) and the long road to an accurate diagnosis. Nancy is a certified caregiving consultant and co-founder of The Caregiver’s Journey, 

Nancy shares the subtle behavioral changes that first raised concerns, the frustration of being told it was "just anxiety," and why caregivers must trust their instincts when something doesn't feel right. Together, they explore the differences between Alzheimer's disease and Frontotemporal Dementia, the challenges of language loss (primary progressive aphasia), and the importance of advocating for a loved one when the medical system falls short.

The conversation also dives into some of the most emotional aspects of caregiving:

• Recognizing the early signs of FTD
• Why spouses and family members often notice symptoms first
• How to advocate for an accurate diagnosis
• Protecting your loved one's dignity throughout the disease
• Navigating aggression, incontinence, and difficult behaviors with compassion
• What it means to become a "pragmatic caregiver" and find peace in the present moment
• Why love can endure, even when memories fade

Nancy's wisdom reminds us that while dementia changes relationships, it doesn't erase love.

If you're caring for or walking beside someone living with FTD or any dementia diagnosis, this conversation will leave you feeling seen, supported, and inspired.

* The short film mentioned in the podcast:  Love At First Sight starring British actors Sir John Hurt and Phyllida Law 

If someone you love experienced neglect in a nursing home…Then you know how desperately the system needs to change.  History has shown us that It takes people power to change anything worthwhile. That’s why we we’re launching something that’s never been done before. On September 27, communities across the country are coming together for the first-ever National Long-Term Care Reform Day.This is a peaceful national walk for dignity, accountability, and change in long-term care.We’r

Transcript

Susie SInger Carter 1:07

When the world has got shut down and Alzheimer's sucks.

Don Priess 1:13

It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alls, a real and really positive podcast that takes a deep dive into everything Alzheimer's, the good, the bad, and everything in between. And now here are your hosts, Susie Singer Carter and me, Don Priest.

Susie SInger Carter 1:47

Hello, it's Susie Singer Carter.

Don Priess 1:50

And I'm Don Priest, and this is Love Conquers Alls. Hello, Susan.

Susie SInger Carter 1:55

Hi, Donald. How are you? Did you hear me? Was that too low? I was trying to be like, you know.

Don Priess 2:00

Well, it was very kind of a little bit more.

Susie SInger Carter 2:02

I was trying to shake up my personality because I don't know. I'm tired of coming off like a cheerleader all the time. I was trying to be like very adult, very Maria Schriver. No? Yeah.

Don Priess 2:12

Doesn't work for me. Well, I mean, it wasn't like

Welcome And A Quick Check-In

Don Priess 2:14

a cheerleader. It was like a uh kind of like a foreign film.

Susie SInger Carter 2:20

Noir?

Don Priess 2:21

Yeah, exactly. But um it was effective. It's I like it then.

Susie SInger Carter 2:27

Okay. Yeah. Back to my acting days. Yeah. When I when I used to be an actress and I wasn't in caregiving and talking about this all the time, which is important. And I'm glad I'm here. I'm not complaining. I love it.

Don Priess 2:40

I'm complaining.

Susie SInger Carter 2:42

You are complaining, but that's not you.

Don Priess 2:44

How's your mom? My mom, it's interesting, you know. For those who don't know, my mom has uh Parkinson's dementia and she's at a stage now where I mean she doesn't she's not mobile anymore, and uh she's in a in a actually a really good facility right now. They she went with a stage four bed sore from the other place that she was at, and they've completely healed it, which is amazing. Um but she's in a stage now where she talks a lot, but they're not words, it's mainly sounds. She feels you can see her is that she's having a conversation, but there's no words, or very few occasional. We went in la this weekend and she's talking, and I'd say eighty percent of the things that came out of her mouth were words. And there were some coherent sentences here and there. It was That's so fun. That's bizarre because it's been it's been such a long time since we heard anything in even close to that. So we're not we don't know, you know. We don't know what we're doing.

Susie SInger Carter 3:45

I don't know what it is, but you just be grateful for it because oh yeah, it's like when my mom wasn't

When Dementia Speech Suddenly Returns

Susie SInger Carter 3:51

talking and all of a sudden she just out of nowhere, like two months down the line, just goes, Hey, I love you. Like just full on hello, mom, for five for five seconds.

Don Priess 4:02

You were there to it.

Susie SInger Carter 4:03

I mean, it's like so bizarre when they just and I and it's like running a marathon, right? Because it's so I think about I told her that, remember? I was like, Oh my god, mom, what did you just do? You just pulled words from your brain and you held them there, carried them down to them to the the mechanics, and you still remembered it, and then you came out with all the emotion and the feeling that you ever had. It was it's beautiful. So your mom, maybe your mom's like relaxing into because sometimes they're fighting. I feel like I don't know, I'm just talking out of my tushy, but um, you know, I think sometimes they are they're so um the anxiety ridden because this change is so so abrupt. We forget that there's they're dealing with it. And it's possessed. Every day is you know difficult.

Don Priess 4:52

Every moment. I mean, literally every moment she's in a place she doesn't know where she doesn't know where she's gonna be.

Susie SInger Carter 4:57

And a brain she doesn't know. Her brain is doing, you know, she's having hallucinations and she knows it. That that has got to be so scary.

SPEAKER_02 5:07

Yeah.

Susie SInger Carter 5:07

No, to know that you're do you're in it, it's ha it feels real, and then you're saying, but I know it's not real, because that's what your mom would do. She would say, Oh, I see this and this and this.

Don Priess 5:19

Yeah. Early on, she would literally say, you know, she'd tell me about the little boy that next to her, and he's knitting something for her, and she's literally reaching out and he's she's taking it from her, and then she's telling me that she's in another place. She's at gr my grandma and grandpa's place, which of course they haven't been around for decades. Um, but she's there right now, and can you can you tell my brother to come pick me up? And I'm like, Mom, you know, could look around, look around. Oh, yeah. Oh, where are you? I'm in my room, but can you still have him pick me up? Because I'm you know, she was literally in two places at once.

Susie SInger Carter 5:53

Yeah, it's like knowing it's like a dream. You know you're dreaming. Anyway, that's a whole nother conversation. But that's a actually, so that's a good thing because she's feeling at least she's relaxed, and that's good. And that's what you want, right? And that she feels safe and yeah. I love that.

Don Priess 6:09

And it could be next time we come back and she's back to the we don't know, and you know, we'll see. You don't know.

Susie SInger Carter 6:13

You know, it's every moment you take it, yeah. You take what you can get, right? We can't. Yeah. Yeah, connection. That's good. I love that.

Don Priess 6:25

Yes.

Susie SInger Carter 6:26

We have a great guest today.

Don Priess 6:28

We do. We love that.

Susie SInger Carter 6:29

Yeah, because we're gonna talk about some things that we haven't talked about before. Uh really, you know, and and and um so which after 119 episodes is really a challenge because it's really a challenge.

Don Priess 6:42

You think you've covered everything.

Susie SInger Carter 6:44

But you have no, there's so much more to cover. But this is good. I'm excited about it because even though it's it's of course it's in dementia and Alzheimer's, but it's a different, a different uh manifestation and and typology of it. So let's get let's get to it. Because we've got so much to say. We were already we already did a podcast before we turned on record, so I hope it's as good.

Don Priess 7:07

We we'll see. Let's find out.

Susie SInger Carter 7:10

Okay.

Don Priess 7:11

Nancy Triester's expertise is rooted in lived experience. Her husband Kim was initially misdiagnosed when early symptoms of frontotemporal dementia or FTD were dismissed as anxiety. It took persistence and multiple evaluations before he was correctly diagnosed. Today, along with her website and podcast partner Sue Ryan, the CaregiversJourney.org helps caregivers understand why getting the right diagnosis matters and how to advocate when something doesn't feel right. She brings clarity, compassion, and practical guidance to a topic many families face with little support. Nancy's mission is to empower families through essential resources and knowledge, helping them navigate the path towards peace of mind. And with that, let's not wait another moment and say hello to Nancy Triester. Hello, Nancy.

Susie SInger Carter 8:01

Well, hello, thanks for having me. Oh, it's a pleasure, Nancy. We're so much fun and and a lot to talk about. Yeah, you're great. So, so and I like I like your partner Sue as well, Sue Ryan, and and I've been on your podcast, and you guys are really

Introducing FTD And Why It Matters

Susie SInger Carter 8:19

doing great things with the care caregivers journey, and I and I am grateful for that because we can't have enough conversation, right?

SPEAKER_03 8:29

That is so true. We we focus on more of a advice and how-to podcast. So we have we're kind of choppy chop. You know, here's the topic, here's what we're doing, here's how you can help work through it, here's the best things way to do it, and and uh try to get through it. And sometimes that is a challenge to get right down to it, you know, quickly.

Susie SInger Carter 8:47

So it is, it is, and and we're we're about, you know, uh let's talk about what we're going through and like what's the what it you know the the journey. It is the journey too, it's part of the journey. But so, you know, first of all, we don't we haven't talked a lot about frontotemporal dementia. So I would love you just to and it is the same diagnosis that everyone has here heard about that Bruce Willis has, and so it's it's become part of the zeitgeist, but I don't know what if people actually understand um unless they had it or have it or dealing with it in their own family or friends or circles. So explain it and and let us know what it is, because I I actually don't know everything about it.

SPEAKER_03 9:32

So it's one of the top four most common types of dementia, but once you pass Alzheimer's, which is call it 70% of dementia, and then you do vascular dementia and Lewy body dementia, you're down in the 5%. So it's not a big percentage of dementias. And then but when it comes to people under 65 who get dementia, it's actually the number one type of dementia for young onset dementia. So uh it is more uh prevalent in people younger younger than 65, normally in their 50s or early 60s. So that's first. Uh there are a couple of variants. There actually are more than two variants, but there are two main variants. One is behavioral and one is a language variant. However, when we talk about sort of how my husband's diagnosis came about, some of the behavioral stuff starts even in the language variant. So there's interesting, you know, as usual, we're always looking for what are the signs and what are the symptoms and how do we know something's strange is happening. Some of the things that happen with um frontotemporal dementia even in the language variant, which is called primary progressive aphasia, which is what Bruce Willis has, um start with behavioral uh issues or challenges as well.

Susie SInger Carter 10:47

Is there is there a type of frontal frontal, let's just call it front uh FTD? Yeah. Um is there is there a variant that does not manifest with aphasia?

SPEAKER_03 11:01

Yes, the there's a behavi the there is a behavioral variant that you may never get aphasia. So the aphasia variant has some behavior to it, but the uh and some people even call the aphasia variant um the language variant of Alzheimer's because they do, even though it's frontal-temporal dementia, they do, it does start looking towards the later parts. And I think we all know most dementias, as you get towards the later parts, they all sort of look alike anyway. But it it it it does have some uh close relationship to Alzheimer's as well, and as and some so some people call it the language variant of Alzheimer's, even though it's frontotemporal dementia.

Susie SInger Carter 11:40

Interesting. And and and and are they are are doctors able to diagnose that as a where they can't really truly diagnose Alzheimer's until after you pass at this point, you know, and they can actually if they do a bi, you know, do take a look at your brain afterwards, then they can actually give you a definitive answer as to whether it was Alzheimer's or not. But with with um FTD, they can diagnose that.

SPEAKER_03 12:06

Well, with Alzheimer's now with the blood test, they can at least tell if you had the amyloid plaques and you had Alzheimer's, I forgot what they call it, something, where they know they know you have all the Alzheimer's, things that make up Alzheimer's. So whether you actually show symptoms of it or not, you might be one of those lucky people who never actually gets dementia, but it's very rare. So you have to have both cognitive challenges and the plaque in your blood. But they can they can now tell if you have Alzheimer's. Frontotemporal dementia, they are um latching on to some of the Alzheimer's research to see if they can do it. There is some plaque involved in frontotemporal dementia, so they're they're latching on, but it's not as advanced as Alzheimer's in terms of figuring out if you have it. So it's it's guesswork uh at this point.

Susie SInger Carter 12:51

So it is still guesswork because a lot of times, like you said, the manifestations of dementia of all the types cross over, they bleed into each other, and so it's really hard to tell, right? Because you and I were talking about the behavioral changes that we noticed early on with our with your husband and my mom are very similar. And so um I I kind of want to jump into that because I think people a lot of people go through this, the the um misdiagnosis, and and the and which doesn't which which actually bleeds into your family and your and your you know social circle. Uh, you know, you might be saying something's wrong with your husband, your mom, your your brother, whatever, but and everyone else is is you know downplaying it. And and that is so difficult. So talk about your experience with your husband and how when it started and and all the all the all the details about how old he was when you first started noticing it, because I reckon I'm you know, af from the research that I've done and talking to so many people, it feels like we can see signs 20 years earlier.

SPEAKER_03 14:05

They absolutely say that about Alzheimer's specifically, too, that 10 to 20 years beforehand you start to have the medical symptoms as well now with they're trying to figure out how to get some of these tests earlier because they'd be able to tell us if we're on the track to get it.

Susie SInger Carter 14:18

Even which is actually scary because we it we all forget words. And I I can't, you know, I know everybody that has lived with someone with dementia has got like if you forget a word, that's it. I'm like already, like I'm sweating. I'm like, okay, this is it. Like I need to like I need to do my my bucket list today. It's scary.

SPEAKER_03 14:43

Well, that's what happens when I tell people about one. So I'm getting ready to do exactly that. When I tell people what my husband was doing, you're gonna go, oh my goodness, I think I have frontotemporal dementia. So I will describe it, but uh, but it is gonna give you that reaction. So nuts. Okay. Yeah. I'll try to be a little bit more and make you feel a little bit better about it. So I would say um probably he was he was really he was 59 when we started trying to get a neurologist involved to get a proper diagnosis and crossed his 60th birthday before we got a proper diagnosis. But that's not for like a trying for months beforehand. Um, probably 57 or so when I noticed something's wrong. Something's wrong. I don't know what it is, but something's wrong. And some of it was forgetfulness, but not in not that wasn't the main thing. Um, but there was a lot of strange behavior, uh, impulse by. He bought a car without telling me.

SPEAKER_02 15:42

A car.

SPEAKER_03 15:45

Exactly. I'm like, what just happened? You bought a car.

Susie SInger Carter 15:48

We didn't even discuss it. You came home and you had a car. And what did like how did he present it to you? It was like ta-da!

SPEAKER_03 15:57

He knew he was in trouble. Okay. I didn't keep him from doing it, by the way, but he knew he was in trouble. But and that was just one

Early Red Flags And Personality Shifts

SPEAKER_03 16:04

example. I mean, this just crazy stuff like that that he was doing. And this is a man who loved other people, loved his neighbors, just loved to be helpful, etc. And he was doing things that I'd be like, honey, you're you're bothering the neighbors. They, you know, you're disturbing the neighbors. Oh, I don't care, I can do whatever I want. I'm like, who is this person? It's just anyway, that went on for a couple of years. I'm like, I don't even know who this person is. It's all very strange.

Susie SInger Carter 16:32

Question, question. Did he ever question it when you brought it up to him? Like, what did he like at did he ever at one point go, yeah, I'm I or or you know, like, I that's not like me, I'm sorry. Like No. No, never mind.

SPEAKER_03 16:45

I wish, no, no, no, no. He defended himself completely. No. He thought I was the crazy one for even second guessing him. But then what happened was he started the language part. So he'd started using the wrong words or skipping words when he'd talk, or saying thing or it uh instead of a noun. And so this is the part where I scare everyone who's listening, right? Because you're like, oh yeah, how many times have I done that? But but he um but it was so much more pronounced than just what you do casually, saying tuck for truck and um and and having a conversation sometimes, and he's looking at you like he what he said was perfectly well, maybe a little bit of what Don was saying his mother, his mother was doing perfectly clear, and you're like, I have no idea what you just said. You know, you're just throwing words in there, they call it word salad, you know, just throwing words in there sometimes.

SPEAKER_02 17:42

Yeah.

SPEAKER_03 17:43

Um so we went out, ironically, to the car comment, we went out in January of 2015 for to buy me a car together, because this is what couples do. They go together to buy a car, right? You don't do it and then just show up, ta-da. So we went out to uh to buy a car, and we're talking to the salespeople as we go from one um dealership to another, and he really is ha struggling to carry on a conversation, to even keep up with the conversation and to carry it on. And we got home, and I had mentioned to him casually a few times that you know maybe something was wrong and he blew me off. So I just dropped it. One nice thing about dementia is there is no emergency because it's a very long process, right? So you can plant some seeds. Now, I never thought it was dementia, never even crossed my mind that it was dementia, it's words, there's no memory loss here, so you know it's not really my my concern. But we got home from car shopping, and he he's down in our terrace level basement watching TV, and all of a sudden, up the stairs, I'm upstairs cuck cooking dinner, and I hear this Nancy, can you come down here for a minute? And I said, sure. So I went down and sat down next to him on the couch, and he said, Something is wrong with me. And I was like, Hallelujah. Because I knew something was wrong. But he finally had through that day just really struggled enough to where he accepted something is wrong. I know it is sad. And I said, Well, I I think you need to go see a neurologist. We need to go see a neurologist. And he said, I think that's a good idea. So I started looking for a neurologist, found one covered by our insurance, five minutes away, and he wanted to go on his own. I said, Okay. So he went on his own. Well, he comes back from the neurologist, and he says, Um, well, he's gonna do some tests. Oh, I asked him how it went. He said it went fine. He's doing some tests, checking his B12, you know, all the things we know that are symptoms that can cause someone to have uh dementia-like symptoms. So then he I come home from work a few days later and he says, Okay, the tests draw back, everything's fine. The doctor says I just have anxiety. I'm like, okay. So um I let that sit for you know a few days. That's a doctor. You have to assume doctors know what they're doing, right? Nothing's wrong. He's got anxiety.

Don Priess 20:08

And you want to hear it, you want to hear that too. You you want it's like oh, that's not that bad. We can deal with that.

SPEAKER_03 20:15

It's okay. It's okay. Yeah, it you know, we just need him to calm down a little bit, right? So we go, uh that I that sits with me for a week or two, and then finally one day I go to him and it because it's continuing, the skipping words and all that. I said, honey, something else is wrong. You do not have anxiety. It's not just anxiety. Maybe you do have anxiety, but that's not all it is. Let's go back together to that neurologist and sit with him and talk to him some more. So he agreed to do that. So we made an appointment with the same neurologist again, and I went with him this time, and we sat and talked to the neurologist. Well, this neurologist now imagine that the dementia is a language challenge. This is how it's manifesting itself. This neurologist never asked my husband a question, didn't hardly talk to him, spent all the time explained to me about his fancy medical degree from Emery and who he knew and all this stuff. We spent the entire appointment. I'm thinking, can you talk to this man over here for a few minutes and listen to him talk? Because something's wrong with him. This guy just talked about himself the whole time and I guess justified his diagnosis.

The Anxiety Misdiagnosis And Turning Point

SPEAKER_03 21:24

It was bizarre. So we left, and I'm like, okay, I think we need to find a new neurologist. So I started calling around for some friends, found another neurologist that a friend of mine recommended, and we go to this guy. He looks like an absent-minded professor. His socks are falling down, you know, there's no elasticum anymore. He's all frumpled and everything. And we go sit in his office and he said, What's happening? And I said, Well, we got a diagnosis of anxiety, but I'm concerned it's something else. He turned and started talking to my husband. He talked to my husband for five minutes. He looks at me and he said, He doesn't have anxiety, he's got aphasia. And I thought, I don't even know what that is, but okay. I went home and looked it up, and I'm like, oh, he really does have aphasia. Now, aphasia can be from a stroke, aphasia can be from a brain tumor, from a brain injury. There's so many things that can cause aphasia in addition to dementia, that we went back for a battery of tests. He had to have an MRI or a CAT scan, I don't remember which, but there's a lot of stuff they had to do to rule out all these other things. And then eventually, this is why we passed the 60th birthday, he got a diagnosis of frontotemporal dementia, primary progressive aphasia. Um, but it was quite the journey to get there, as you can hear.

Don Priess 22:38

So it would be probably highly recommended for anyone who's listening to this and might be in similar situation to not let the person go by themselves first, because they're not going to share the experience that you have with him. You know, he's not gonna he's not gonna say, Hey, you know, I've been mispronouncing words and I've been leaving words out, and he's never gonna say that in a million years. So, rule one, go with somebody that a hundred percent. Yeah, with you. Yeah. Can you can you give a quick just just for our audience, aphasia, like just a quick definition, simple definition.

SPEAKER_03 23:16

Yeah, yeah. And one of my mother's friends has aphasia from having a stroke. And she struggles to find words. She seems to be able now aphasia comes in two different forms. There's expressive language, your ability to get words out, and there's receptive language, your ability to take on what's happening. With dementia aphasia, it might start with your expressive language. It does move to your receptive language as well. So you have a difficult time understanding what people are saying. Lots of aphasia that comes with things like stroke is just the expressive language. You can't find the words and formulate a sentence very well. Um, and so you're struggling to participate in a conversation, but you can listen to the conversation and enjoy other people and talking and such. So it depends on what kind you have. But unfortunately, the frontotemporal dementia kind does eventually you lose your your receptive language as well.

Susie SInger Carter 24:09

Ugh so hard. So hard. Can we back up one even a step before that and talk about besides the the words because we and and the aphasia factors, what you being so close to your husband, to Kim, do what did you uh see? Because I think you mentioned there was some behavioral things that was were different and that you clocked because I had the same thing with my mom. Like I was noticing, you know, she was being not the mom that I knew, and she would didn't have any other issues, you know, but it was like she's she's spiky with me all the time. Like, why is she so spiky, you know? Like who are you? You know, and I was getting really upset, and no one else saw it, of course. They're like, You're being a super sensitive mom, or you're being super sensitive, Susie. You know, like you know, she's fine. She's uh we don't see anything wrong. Like, I'm telling you, she's not herself. So maybe you had the same experience. I did.

SPEAKER_03 25:07

And I would say um that's super sensitive, it's actually kind of what's needed, right? So at some point that's what the doctor said. He said, you know, your family's and by your family, your spouse, your daughter, your cloth, your your immediate family is probably the first people who are going to notice something's not wrong. And so the doctor actually needs you to be pushing on those super sensitive things because conceptually, they're never gonna get it in a 15 now. This one doctor got it in a five-minute conversation, but clearly it didn't happen months before.

Susie SInger Carter 25:42

You can't count on that to he was the mad scientist, so he was the mad scientist.

SPEAKER_03 25:46

So cute, actually, when I think about him.

unknown 25:52

He really was.

SPEAKER_03 25:53

He really was. Um, but I think being super sensitive is is actually important. And and I tell people when they talk to me about this, is go to the doctor's office with your mother or your loved one and take a big yellow pad with you. Because that show you're showing up with something that says, I'm here to have a conversation and I'm here to, I got some things I'm concerned about. And write down those things you're concerned about. Because especially if you're going to a general practitioner, they're probably not even as we're working really, really hard these days to get the general practitioners trained where they are comfortable diagnosing somebody with dementia, but that's not the lion share of them. And so they're not motivated to spend a lot of time trying to help you get a diagnosis of dementia or even get you referred to a neurologist. It's just not the line share of them's motivation. And so you need to show up with this is a serious conversation. We are seriously concerned, I am seriously concerned, and we

Finding A Doctor Who Truly Listens

SPEAKER_03 26:56

and and push it. And if it doesn't come out of that meeting, um follow back up. You said you were gonna afford, you were gonna, you know, um, you were gonna refer us to a neurologist. We haven't gotten a name yet. So push it, push it, because you're the one who knows.

Susie SInger Carter 27:12

It's true, yeah, you do. And and and if you're especially if someone's younger and who's experiencing these kinds of um manifestations and and they're you know, they've got their skills as a human being. Like my mom was very skillful in uh her wit, and so she can wit her way out of a lot of you know hard conversations, and especially with doctors. So she was very charming. And I watched her. I watched her do it, you know, like you know, those the the I uh the those initial tests that they do for Alzheimer's, you know, what day is it? Who's the president, and then the clock, the hands of the clock, and my, you know, my like who's what day is it? Uh what you tell me what day it is. Let's see how it's like, you know, so my mom would turn it around, right? And go, oh, you're right, you're right, you know. And so yeah, and if I wasn't there, forget about it. Forget about it. She would have that doctor wrapped around her fingers so fast they'd be going out to dinner that night. You know, that's the way it would happen. And so I had to be there, you know. I had to be. So yeah, and we are the ones that see the change. We we see it. It's but that's all through being, you know, being part of the tribe, the community. You are you know the baseline of somebody. You can't, it's not a one size fits all on any kind of any way, any any diagnosis of anything is not a one-size-fits-all. So it's so important to have your team, your family, your your community, whatever, whatever you want to call them. So, so then so you finally got your diagnosis. Now what?

SPEAKER_03 28:54

So now we're getting our lives in order as best we can, right? So I'm trying to get our medical power of attorneys and all those things that need our powers of attorney, wills updated, those things that need to happen when you have a diagnosis of dementia. And if it's really important that you know what you can do while your loved one can still participate. So I'm not saying I did it perfect, but I did get some basic stuff done, which is which is nice. But I'm still working full-time at the time. I'm much more aware of um potential challenges. I'm trying not to push challenges on him, but I'm watching very closely what his capabilities are and what they're not. And I'm reading up, I jokingly say, trying to get a PhD on frontotemporal dementia so that I can start to notice what the signs are. Uh there's a lot with frontal temporal dementia, there's a loss of the ability to use uh appliances and mechanical things earlier than there is with Alzheimer's. So not being able to use the coffee pot or the remote or the phone. Those do happen eventually, as you know, with someone living with um Alzheimer's or other types of dementia, but they happen earlier with frontotemporal dementia. So I was able to watch for some of those things and pay more attention to what what what he's got access to now and what he doesn't have access to anymore. And, you know, it's not fail-safe. You might have access to something today or for two days in a row and then he loses it for two days, but it's two steps forward, one step back. It's coming, whatever it is. So usually those are early signs too, we're getting ready to lose this skill, whatever it is. Um, and so I was still working, but I was also traveling, I was had a internet a global job, so I was traveling a lot internationally. So I started to, I told my boss what was happening, and I started to cut back on the how far away I was going, international travel. I limited it a lot. And then slowly as his skill set, he was still driving, as his skill set started to um, he started to lose skills, I started backing up where I would only go on day trips, and then eventually not traveling at all anymore, and then eventually working from home four days a week, and I had someone coming into the house one day a week, and so I would go to work four days a week, and then eventually I'd work from home 100%, and eventually I worked part-time. But all of this as his skills were his ability to just live by himself and I mean drive himself around and and deal with feeding himself and all the basics where as I watched those diminish, I slowed down on everything I was doing career-wise until finally I retired so that I could stay home and take care of him.

Don Priess 31:41

And what what were from initially, from the first moment, what was what was Kim's state of mind? Was he scared? Was he in denial? Was it something that changed uh every day? Where was he at when he heard it, and then when you started to move forward with all these steps you had to take?

SPEAKER_03 32:00

He was um upset at first. He didn't get it. At this point, we were far enough along to where he he didn't understand the word aphasia, he didn't understand frontotemporal dementia, he didn't understand even really conceptually what I could say he's got dementia in front of him, and he didn't flinch because I don't think he actually remember we got a language problem, right? So there's some good news in that, right? He didn't really understand the language stuff of it. So he would tell his friends when he was still driving around. He had he I I immediately one one of the other things, I immediately filed for Social Security disability, so he retired as as part of this. So all of that flowed nicely as the early things that you do. Um but he was still driving, and his friends would say he told them that he had something wrong with his brain. That's

What Aphasia Is And How It Progresses

SPEAKER_03 32:50

as best he could describe it. And then you know, m I don't remember if it's months or maybe a year or two into it, but he forgot he had dementia. So nothing. Nothing as far as he's concerned, he's fine. Nothing's wrong with him. And I from what I can tell, 80% of people, I think the stat is like 81% of people with dementia forget they have dementia. So you know, there's just so far you can take with that because now you're dealing with someone who doesn't know there's anything wrong with them. That causes its own set of problems.

Susie SInger Carter 33:23

Heck yeah. Yeah. Yeah. My gosh, wait, okay, now this this is I'm very curious about all this. So frontal frontotemporal, meaning it's it's the front part of the brain is being is being affected. Yes. Is that that's different than Alzheimer's? Yeah. That's a different thing.

SPEAKER_03 33:40

Alzheimer's starts in a different area of the brain. However, as dementia progresses, people with Alzheimer's lose their language.

Susie SInger Carter 33:48

Right.

SPEAKER_03 33:49

And people with frontemporal dementia lose their memory and their coordination and a lot of the same things. So as you're you know, you have the degeneration in, you know, and your cognitive capabilities uh diminish and your brain degenerates, it all starts to look the same in the end.

Susie SInger Carter 34:06

It all starts to look the same. But in the beginning, like, and I'm asking this specifically because my my ex-husband, when I first met him, had fallen off a bus in in in Britain. He was British, and he had a front uh his he had a brain injury in a trend.

SPEAKER_03 34:22

Yeah.

Susie SInger Carter 34:22

And lost his sense of smell. And it was when I was still acting, and we I met this guy, you know, uh and he's like playing opposite of me and he can't remember his lines, and I'm getting so upset because he keeps, you know, he seems normal, except that he's being a jerk because he keeps like screwing up my scene, right? But I didn't know that he had just gotten through like, you know, 10 weeks in hospital with you know, and was like trying, you know, trying to act normal. But it if but when I married him, which was you know, that's another podcast. Well, um, that's the one with the accent. So and it, you know, the front brain injury is is really difficult because it affects your behavior, it and and it affects your ability to um to censor yourself sometimes, and you know, the filters are gone sometimes. And and I was curious if that is the same kind of manifestation when with someone with temp frontal temporal.

SPEAKER_03 35:23

It that you're describing the behavioral variant, exactly. The behavioral variant is where there's a lot of um uh difficult behavior, to say the least, uncensored behavior, sexual uh you know, inappropriateness, all that. The primary progressive aphasia does not have much of that. I mean, there are mixed, it's called mixed, there are mixed variants, which is mixing both. But if you have pure primary progressive aphasia, you do have some, a little bit of behavior problems. It's mostly lack of empathy, which is of course not pleasant. Um uh, but you don't have as much of these other symptoms. But what you just described is what the behavioral variant looks like.

Susie SInger Carter 36:06

Isn't that interesting? Because and I think about that a lot, and when you say the lack of empathy, because I would tell you that, you know, definitively that that my ex is a toxic narcissist because he had zero empathy, like zero. And we never I never knew if it was real or if it was from his accident. Yeah.

SPEAKER_03 36:27

It could be, it absolutely legit could be.

Susie SInger Carter 36:30

Right. Oh, so it's it's so it's very um complicated and confusing and really hard on the person on the receiving end and the family, you're right, and it which brings me, you know, because it was really difficult on my daughter, his his daughter, and um trying to navigate it, not because we can't you can't understand if it's a if it's just them being a jerk and just being completely dismissive and selfish and all the bad things.

Don Priess 37:00

It could have also been just because he was a British actor, but that's true too, which I How do you know? You don't know.

Susie SInger Carter 37:07

How can you know these things? Nobody teaches you. All I know is I was intoxicated. You might forgive sakes, you tell me. I met him. He was the love of my life, and I hate him so much.

SPEAKER_03 37:23

You know, let me add something though. There are a lot of stories, not the least I mean, I've heard this more than once, from people who are married to someone who's eventually diagnosed with frontotypical dementia who are in the process of getting divorced when the diagnosis happens. Because all of a sudden your loved one is a jerk. And you are I mean with a capital jerk. Exactly. And you are like, I don't want to be married to you anymore. You're a jerk. No. What a happened. You used to be such a nice guy, and now you're a jerk. And so I have heard that so many times I can't tell you. People in the process of getting divorced, these are people

Advocacy Tips For Getting Answers

SPEAKER_03 38:01

like me who are now advocating for dementia, so I've heard their stories, and they're like, and then usually at some point it's either something like the language got really bad or their memory got bad, but something that caused them to think there was a dementia angle, and they get a diagnosis and they're like, Oh, now I feel terrible for how mean I was about how bad how much of a jerk you were, you know, because I was I was so mean at everything you know you did, and you know what, and you couldn't control it and it wasn't your fault. So anyway, along those lines.

Susie SInger Carter 38:32

That's so hard though. I mean, talking to the caregivers or somebody, you know, that is such a hard position to be put into because whether we know what the diagnosis is and what the cause of it is, the motivation behind it, even if it's not you know uh pointed and just and completely you know motivated by the person's personality, you know, sane personality, un you know, un un what's the word I'm trying to think of? You know, unaffected brain. Although I I I I I'd like to say that anybody that acts like that, there's something wrong with their brain because there must be. I mean, there must be. I mean, you know, if you're lacking empathy and you're being a jerk, there's something wrong with you. So, but I mean it's really difficult to be in that position because you take so much, you know, abuse, emotional abuse. And it's really hard to navigate that. And that's such a hard position to be put in to, right? And I and it which brings me back to a conversation you and I were talking about before we we recorded, which is you know, the the backlash that Emma Willis got from Bruce Willis, like when she decided to put him into a facility that could take care of him. Um and and I guess you know, let's just call a spade a spade, shield her children from the manifestations which aren't pretty, which are scary, which are hard to for anybody of any age to really accept. What what's your thoughts on that?

SPEAKER_03 40:06

Yeah, there it there I did, I think I I I wrote something about it as well. I um was included in somebody's article, I can't remember who it was, but I I because it was so frustrating to me because she was doing such a valent job of talking about it but not really telling everything she knows, is what I would say. Right. Because you don't know, if you don't live in this world, all of the tremendously difficult things that are having when your loved one is at home. My husband was at home until he passed away. I went through all of it, and I'm telling you, it is not pretty. And is it in and I'll give you a few examples just because people need to know the reality of them, and Emma Willison probably never say any of these things out loud, but they are things you don't need your 11 and 13-year-old daughters to be around. So there's a there can be a lot of aggression um and and aggravation and difficult behavior where they're being very aggressive. Um that's scary. And it's scary, it was scary to me, and I'm a grown-up. I was gonna say, how did you do that? How did you get through that? It because it is-I stood well, number one, I a lot of people don't like this, but I used um medication for about a year and a half um to help keep him sedated. And the nice thing about keeping him at home is I could keep I could add the sedative at home, keep him sedated, and then slowly but surely as his he got packed, because the nice thing about this is you don't know, it's not permanent, but you don't know it at the time. This is not permanent. He will, his dementia is going to progress to the past this point, and then he's going to be more um compliant and more docile and so on. But I kept I used sedatives, and then slowly but surely he seemed to be better in the mornings, and so I removed the morning sedative, and then you know, we we dealt with it. He was still busy in the mornings, and I by busy I mean walking up to the granite countertop and trying to pull it off the count off the counter and you know, crazy stuff, you know, taking lamps and trying to carry them off with them and they're still plugged into the wall, but not aggressive like that you had to be scared, you know. And then but then that softened, and then I thought, but his afternoons were still bad, and then the afternoons started to get a little better, and I said, Well, maybe we can take him off the afternoon sedative. So we took him off the afternoon sedative, and after two weeks, I'm like, ah, we need to put him back on the afternoon sedative because we can't deal with this. And then maybe six weeks later, we tried again and we were able to get him off the afternoon sedative, and he was busy in the afternoons, but his mornings were pretty calm. And so eventually he was just on a sedative at night to help him sleep. And I was able to unwind all of everything I did to be able to keep him at home for that year and a half. But that's something you don't need your 11 and 13-year-old daughters to to see. Uh, incontinence. I mean, you know, they're gonna sit in the chair and think it's a toilet. And do you really need your daughters to see someone pooping in a chair? I don't think so. You know, if you don't catch them or water in the plant, you know, that those are things that are happening and they're real. Um, and and it's not something pretty to talk about, but it is legitimately things that you have to manage through. So I was defending her big time.

Don Priess 43:28

It's hard for a child to it's hard, yeah. I mean, it's hard enough for an adult to because when they're acting out at you to not take it personally. And so for a child to, you know, you can explain to all day long, oh, that's not really you can't it'd be very hard to separate that.

Susie SInger Carter 43:43

It's hard for anybody to do it. That's what I was saying.

Don Priess 43:46

It's hard enough for you.

Susie SInger Carter 43:47

I'm listening to you talk, Nancy, and my heart breaks for you. Like, and I also think what a brave what a what a strong woman you are. Like just to because you love this is like your man, this is your dude, this is your man. You made children with him, and and you make love to him, and it's like all the things that you know and then and then now you're watching him poop in a chair, you know, and it's like you to be there for him and walk him through that is like you're

Behavioral Variant And Relationship Fallout

Susie SInger Carter 44:15

an angel. And I'm not, and that's you know, that's just beautiful. And and you, you know, what a what a what a role model you are for people.

SPEAKER_03 44:24

It was so much easier than it sounds because I I I got to the point mentally where I was at peace with what was happening, and I checked myself every time something happened, how would I want Kim to treat me if I were the one that had dementia and was doing this? And it was it is so easy to make the right decisions when you have that frame of mind. You know beautiful. I he didn't poop in the chair because you know, out of spite, you know, and how embarrassed he must be if he figures out that if I make a big deal out of it and he realizes that was the wrong thing to do, he's gonna be horrified. So instead, you're gonna go, Oh, honey, let's go in here and get you cleaned up. You know, and then you're just trying to not make a big deal out of it because that's how you would want to be treated if you were in that situation.

Don Priess 45:14

Keep the dignity, keep their dignity so important.

Susie SInger Carter 45:17

But I always say that it, you know, even though it, you know, I it was difficult for me with my own mom. It wasn't my lover, you know, my my my partner in life. I just think that I I I have to say that that and I think this all the time, that couples like that go through this are it is such a i the the layers of of emotion that you have to deal with. And and you know, well I we've talked to so many and I've I've become friends with them that we've people that we've interviewed that have are such great role models for that, like Tony Tony Parker, Copen Parker. I don't know if you've ever interviewed him, but he you know, he he went the whole journey with his wife with early onset. She just passed away last year. But I mean, you know, just just incredible d devotion and joyful as much as they could be, and just the the whole thing. And I'm I I and I didn't have that's not the relationship that I was dealing with with my mom.

Don Priess 46:17

It's just gotta be such a such a different dynamic mindset that you have to get into.

Susie SInger Carter 46:23

Like you the way that you could compartmentalize and be so empathetic is just you're just incredible. Like I'm just so proud to know you. That's just a it's a beautiful thing, and you're so strong. And and I mean I say that about when I was raising my daughters. I would say uh I would try to put myself in their shoes like when they're three years old. Like, why is it so important that you have Minnie Mouse right now? Like, why are you so mad about that, right? Like, let me think, let me go back to there and go, Oh, I get it. Okay, you had it and she took it. Well, yeah, I get it now. You know, it's like you have to do that. You have to. It makes you right. So I I think what you're saying is so simple but so powerful. It helps yourself in their shoes.

SPEAKER_03 47:05

It helps every single thing you do. You do it so much more with so much more peace because you're not blaming them for anything. You're not wishing for the way it used to be, you're not projecting into the future what might happen. You're being right here in this moment, and you're being honest, and and Don's hit the nail on the head. You're protecting their dignity every step of the way, and that is so important to particularly to a spouse where you've had that kind of partnership all those years. We were made for thir um, it'll be 35. He was he passed away six weeks before our 35th anniversary. So, you know, you've had that partnership and you're treating them with the with the most respect you possibly can in a very difficult situation for them, um, but trying to protect their dignity every step of the way.

Susie SInger Carter 47:51

Oh incredible. I mean, it just I just put my I just it is.

SPEAKER_03 47:59

Listen, there was nothing worse than when he forgot who I was because he never he never knew who I was after that. So when he forgot who I was, we rebuilt our relationship over the course of probably months, maybe even a year. And I moved upstairs into a guest room, and he thought I was, and he asked me who I if I had to stop wearing my wedding ring ring, because if I wore my wedding wedding ring, he wanted to know who I was married to. And he lived up there with me, because I moved upstairs in one of the kids' guest rooms, because I couldn't get naked and take a shower in the in the bathroom because he thought I was a guest in the house. So I I lived up here uh and I um and I just sort of became his caregiver. And then one day, a few months into it, a couple friend of ours came over and they brought us lunch. They were really good about coming over through his entire uh dementia journey, and they brought lunch, and we're sitting there eating lunch, and I'm like, you know, he doesn't know who I am, don't make a big deal out of it. We don't want him to feel uncomfortable. He's perfectly happy, he's nice to me. He couldn't have been nicer, by the way. Uh, and um and all of a sudden, what the wife looks at me and she goes, Oh my god, he's flirting with you. And he was. And he was, she was right. I didn't even notice it. And he literally reconnected with me in his new world. Now, there's an advantage to not moving them into a community because he couldn't reconnect with anybody else. I'm the only woman there outside of eventually part-time caregiver. But it was really precious to see that new connection where he would hold my hands when I walk, if I would run out and run an errand, he would come back, I'd walk in the door, he would grab both my hands, look me straight in the eyes, and say, I like, like, like, big smile on his face. And I knew what he meant. You know, he was so happy to see me and loved me so much as this new person in his life.

Don Priess 49:55

That that proved that it was right.

Susie SInger Carter 49:59

I have so much to say about this because there's a short film, and I can't think of the name, but I'm gonna put it on the show notes. I'm gonna find it. It came out a couple years ago, and it's from it's British, and it's so gorgeous because it's exactly that story. So it's about this this couple, elderly couple older than you, and the the the woman had dementia, and she ended up coming and I don't I forget how it all manifested, but but at the end of the day, it was him falling in love with her again as a new human, as a new person. But it was just to show that that that the that they they always loved each other, always would love each other, and even as this new woman that he met, and and and ne didn't let on, the other person didn't let on that you know, we've been married. Now it was like they went along with it, and it was so beautiful, and it just was very profound and touching and and gorgeous. But um I reckon that he didn't forget to. There was a familiarity too that no never no matter what, because I don't think my mom, and I'm not saying this from an ego point of view, I just know that when I held her hand and when I walked in the room, whether it was my smell, whether it was the whatever it was, the sound of my voice was comforting, happy, happy

Home Care Reality And Protecting Kids

Susie SInger Carter 51:13

making, and you know, it was it was family. She knew.

SPEAKER_03 51:18

Yeah, they say that there's and I don't know who they are, but there well here's what they say. They say there it's it's a feeling, right? Love is a feeling. And so I may not know your name, I may not know who you are to me, but my feeling is that I love you. And that I that I feel. And so that that's I hope, and I think I believe I choose to believe that as well. That somewhere in there that your heart still remembers the person, even though you don't.

Susie SInger Carter 51:46

A hundred percent. It's it's the reason why people, so many people died during COVID that were isolated because even though they didn't remember their loved ones, they did remember their loved ones and they missed their loved ones, and then they died of of failure to thrive.

Don Priess 52:04

When you go and visit and you know, they don't remember up here, but they do remember here in the heart. They that's where they remember. It's a different way of of of memory. It's a different thing. It's a framing. Yeah, absolutely. And and so that but to know that he fell in love with you again just prove that it was, yeah, it was it Yeah, and I don't think he forgot.

Susie SInger Carter 52:29

I was always right he forgot. Yeah, we didn't make a mistake.

unknown 52:33

Yeah.

Susie SInger Carter 52:33

No, yeah, yeah. Yeah, and you're and I don't know how old you are, it doesn't matter, but you look so young and you look so violent.

SPEAKER_03 52:40

I turned 65 in July.

Susie SInger Carter 52:42

Well, well, you look gorgeous. You yeah, and you you do. And I I just think like you have so much life ahead of you to do you, it's a whole new chapter and a whole new, you know, time for you. And you did such a good job, and you deserve to be happy, and you deserve to, you know, continue to experience life, and I know your husband would feel the same about it, you know. You you are, you know, you are did a valor kind of uh, you know.

SPEAKER_03 53:10

Yeah. And it's really interesting. I feel really good about it now looking back, but right after he passed and and while I was doing it, I felt good about it. Like I'm not gonna be one of those people who says, Oh my goodness, I could have done so much of a better job. I can't tell you how many times I told people that. I am not that person. I am doing everything now so that I will have no regrets. He passed away. I spent two months second guessing everything I did, thinking how much better of a job I could do. I think it's just human nature because there I had told myself my entire time, I'm so happy I'm making this the biggest priority because I'm not gonna regret uh how I cared for him, and then for two months I regretted how I cared for him. Oh my god.

Susie SInger Carter 53:51

Oh my God, I'm I don't even know you, and I'm gonna tell you you did a better job than anyone I've ever, you know, and I know I thought I did a good job. I mean, I also, you know, and this is my mom, and I mean, to the point where they were, you know, I the the the the chaplain wrote about me. I hope this I don't know what this poor girl's gonna do when her mom dies. It's the the only thing she has in her life. It's like, no, that's not true. I have a career, I have children, I have life.

SPEAKER_03 54:17

That's cute.

Susie SInger Carter 54:18

Yeah, and it was like, but you know, my God, it's like she I knew she was, you know, this is important. I needed to be there. She, you know, what it doesn't, of course you have to be there for someone that you love. You can't just go, okay, bye, you know, I'll check in.

unknown 54:35

Yeah.

Susie SInger Carter 54:36

Just like, what do you I don't understand?

SPEAKER_03 54:38

Well, and it sounds like you did the same thing. How would you want them to to to be with you if it were things were reversed, right? You would want some her to be there for you. So I talk about it. Just like Don's being there for his mom already.

Susie SInger Carter 54:51

Yeah. I just want my lips outlined. Just remember that. I tell them that, you know, and don't put some dark lipstick on me. Never.

SPEAKER_03 54:58

Ping. I just want them to brush my teeth.

Susie SInger Carter 55:01

I need I know And brush my teeth too, yeah. Yeah. I try to make it light. I just try to make it. But um, yeah, I so so and you didn't have any regrets. That was one of my questions. So you took the bones right out of my mouth.

SPEAKER_03 55:18

I did. I mean, seriously, for two months. I I just second guessed everything. First, I thought it took him eight days to pass away once we decided it was, you know, that there was no recovering. And you thought the day he died that it that he got hit by a bus, that this was completely a surprise. And I mean, I went through what just happened? How can that have happened? How could he have passed away?

Susie SInger Carter 55:47

You know, like you're totally answering my question. I was gonna ask you. I was like, what I literally have this question here, like what kind of grief did you go through? Because oh my gosh, go okay, carry on, because this is so so important.

SPEAKER_03 56:00

I'm like, how could he possibly have passed away? I don't know how that that could possibly happen. And then I will tell you this, I've learned this. Never tell someone that the person's in a better place. Maybe I could have heard that six months later, right? But right then, the only place he wasn't is at my house with me. And so I don't care where he was, in heaven, in with God, it doesn't matter, he's not at my house with me, and that is not a better place, wherever it is. So that was you know stressful. And I and I when people say that I'd think, please stop saying that. Please stop saying that. So eventually you can hear that. I mean, it takes a few weeks, right? A couple of weeks. And then there was the and and I will say it also felt like having a special needs child that you were responsible for. You feel like you failed. I was responsible for this person, and then I did not, and they did not survive. So somehow I, and even though no one survives dementia, it's not gonna happen, right?

Don Priess 57:00

No one survives life.

Susie SInger Carter 57:02

No one survives life. Even better. I mean, it's it's true. I mean, it is a it's a it is it is a limited uh run. We're on a limited run.

SPEAKER_03 57:13

Exactly. But somehow I felt this is the person I'm responsible for. I've let him down. Anyway, I got through all that. Took me a couple of months. And um Sue and I were already about um we started our the caregivers journey in August of 24. He passed in December of 24. So it took me a couple of months, and then in probably into February, early March of 24, I said, okay, now I'm ready to really put my heart and soul into the caregivers journey, not just a side project, but this is gonna be. So now I work 35, 40 hours a week. I've been retired for um since August of 23, but I work 35, 40 hours a week on the caregivers journey because it it fuels me. I wake up every morning and think, oh, I can help somebody today. And you know, if we do this, we'll it look somebody's life will be better. And you know, you get a comment on YouTube or a comment on Apple Podcasts, and someone will say, I just I needed to hear that today. And and you're fueled and you just keep going. So it's I've been able to turn it into something that has given me so much passion that I could never have imagined having the energy behind. I couldn't imagine having any energy when I was a kid at the end of my caregiving. And to have so much energy every day to do something is a blessing. And and it was fed from this disaster.

Susie SInger Carter 58:33

So same. I feel the same way. It you you sort of you find this groove, and it's it's actually it I think it is the legacy of that relationship and the and what that person meant to you. I think that it

Dignity In Care And Loving Presence

Susie SInger Carter 58:46

that you still get to live with them because it's their journey that has motivated this. And and I think it's a reflection of how much love is there, was there, and is there, you know, and and clearly you had so much. And I I want to tell you, I don't no one ever told me, maybe because I was maybe because I was projecting not to ever say it, like she's in a better place, because I was always fearful that she was gonna die. Like I kept going, I knew she was gonna die, obviously, but uh of course we did have a pact. My mom and I was like, we're not dying, that's for other people, you know. We had and I was like, Mom, remember that deal we had? Hello. Stop, stop it, yeah, stop it. You're don't be a liar, you know. And so you know, I I wasn't, I knew it was coming, but I didn't look forward to it. I didn't think she's gonna be in a better place. It was that didn't enter my mind. I thought that I was still had delusions of grandeur, that I was gonna make her days as good as they could be, and I did my best. I have no regrets at all. You know, I loved, I I gave I showered her with love, and that's the best I could do. And I sang music for her every single day, you know. I went and did my uh, you know, a private uh uh concert, and that's you know, that's all you can do, and you do the best you can do, and that's and then you carry that with you for the rest of your life, and and you do great things with what you guys are doing too, and it is, it's fulfilling, it's purposeful and purposeful. Purpose feels good, right?

SPEAKER_03 1:00:25

Sure does. Sure does.

Susie SInger Carter 1:00:29

What piece of advice would you give? What's the one thing that you want to gift the the audience with that you think I know that's a tough question, but what what what would that be what might that be?

SPEAKER_03 1:00:40

If I could, you know, I wish I could accelerate caregiving. You know, I I I'm I'm a certified caregiving consultant. Frankly, I went through that certification before we started the caregivers journey because I felt like I need to understand a broader view of caregiving beyond just my experience, right? Um so I went through the training to be a certified caregiving consultant, and she describes different levels of caregivers, um, the woman who runs the training. And there is the freshman caregiver, well, she has the anticipatory caregiver. Then there's the freshman caregiver, you're just getting started, right? This is when things are st pretty easy. And then there's the entrenched caregiver, you are deep in it, and you can't even hardly see how to get your head above water. And then there's the pragmatic caregiver, and the pre pragmatic caregiver is the one who has found the peace I was telling you about, has found the way to be in the moment, has found the way to accept the way things are, and um and lean into it. Have be present, be present in the moment, not just be okay, but be present, lean in, be present in that moment, right? And my mother cared for my father in Parkinson for 25 years. My mother-in-law cared for my father-in-law, who I also cared for, both of them. They didn't drive, we they lived three miles away, so I took care of him. He had Alzheimer's. Neither one of them ever got to a pragmatic caregiver. They were both still trying to fix the situation. They were both still trying, wishing for the way it used to be, you know, and everything. If you if I could wish for people and teach them how, and I can't, how to become a pragmatic caregiver, how to get over the hump of being entrenched and get to the point where you can accept that things are the way they are and be in the moment and be present, you will change your entire caregiving experience for both yourself and your care receiver because you'll be a calmer, more confident, patient caregiver. And of course, a calmer, more confident patient caregiver is a wonderful thing for a care receiver to have, someone who is not, you know, running around like a chicken with their head cut off. And so I don't know, I that's not advice, that's more I wish I could fix it for you.

Susie SInger Carter 1:02:56

No, no, that's that is advice because I think that that's what our film My Mom and the Girl was to was trying to communicate is that you know, for a very long time I tried to kick my mom in our world, and then and that's very stressful on everybody, including yourself. And then when you lean in, like you said, when you lean into their world, and then that's when you can relax and realize that you know, get real and say, This is our reality. Now this is the new reality, and now you can find the joy. Now you can find those joyful moments because there are joyful moments, and you know, and I talk about becoming the mom. When I became mommy, the day and I can I remember the the moment, the moment. And I I literally had this swell of endorphins that came over me. I was like, oh, she's safe, and I'm like her mom now, and I'm gonna take good care of her. And look at her, she's happy. I was looking up at her when I was driving away at when she was living with me, and she was there like watering the flowers on our balcony in our live work loft, because that's a place to bring somebody with Alzheimer's. But you know, she she was she was the queen of the of the community. Everyone loved her. She was, you know, going everywhere. And I was like, oh my god, she's happy, she's content, she's look at her, she's picking the flowers of that are just growing off, but okay. Why is she doing whatever? She has to make sure okay. It's okay. She's being a little bit of more of uh morticia, you know, Adam's family. She's cutting the flowers. Anyway, the point is that though that makes your life better. And it's not and it's not fake, it is real, it's authentic. When you get that, you right? You felt you felt good. I see it in what you're saying.

Grief After Loss And Finding Purpose

Susie SInger Carter 1:04:43

You're you're you're you are the emblematic of it.

SPEAKER_03 1:04:46

I just want, I I just wish every caregiver could get there. And and it's so sad when you see it not happening. You know, you can't you can't talk somebody into it. It's a frame of mind. You have to get there on your own. You can't you can't talk some talk somebody there. You can't teach them how to do it.

Susie SInger Carter 1:05:04

So it's love, but that's love. That is also the definition of love. Like I'm I'm sorry, like the the way that you're pragmatic. I think pragmatic uh caregiving equals love. And I'm not saying these people that can't get there to love less. It's just love differently. Because you, you and I, I feel a kinship about that kind of you know, um, devotion to someone that you love. And I would do that for anybody that I love, and it's you know, my heart is is was it's just and it um it's selfish too on my part. I loved her and I wanted her, and I used to think how lucky I was that when I did have to put her in a facility that that I got to see her, that I got to go and and and and make her laugh and sing and sit on her lap and make musgy musgy and all the stuff that you want to do, you know, and and still be uh the mom and the daughter, you know, at the same time. So it it I you know I I I wish that everybody got there. But I think that it is love. That's the I'm good. That's that's the thing.

Don Priess 1:06:05

And when they sense when they sense that you're at peace, that I mean, because Susan used to always say, you know, when a when a when a nurse would come in and she had a certain energy and your mom would kind of recoil with it, even that that person not even saying anything. So the when when you're at peace, that's scientific they yeah, they are just gonna feed off of that and it makes their life so much better. Look, if we could apply this to just us as people in life. Good point. To be stage. In this stage, you how much how much happier would you be when you're not worried about you know what might be, what happened, blah, blah, blah. You know, that it would just make you just a better person in general.

Susie SInger Carter 1:06:48

Babies don't talk, babies don't talk, and they poop in their bed. And they do all the things, and we go, oh my gosh, how cute, and we love them. And and we uh and we understand them. And we don't try to we don't we don't we don't worry about why it's that way.

SPEAKER_02 1:07:03

Yeah.

Susie SInger Carter 1:07:03

Right? And we just go, oh, they're happy because we know they're happy because they're gonna show we've we get it, because it's a whole nother language, or they're not happy, or they're hurting, or they're this and that. We know because we're looking, and we and you know, I i don't get me started about ageism. Anyway. But but I do I want to just, you know, uh it is such a good segue into um why why we're here, why Don and I are talking about this every every as much as we can.

Don Priess 1:07:33

If any episode that we've done up to this point proves our title, what we're all about, it's this one. And that's because this was all just filled and all about love. And that's because love is powerful, love is contagious, and love conquers all. As we thank everybody for watching, listening. If you like what you saw and heard today, please share, subscribe. Uh, you know, definitely uh all the information about the caregivers journey will be in the show notes. And uh also and yes, Susan.

Susie SInger Carter 1:08:03

Yeah, don't forget we're about our uh walk in September on the 27th for the um inaugural long-term care reform day. Um you can sign up on roar for ltc.org. Um, we we will gladly love to have you join us. It's so important. We need to make people aware of what's happening to people that we love so much and who are vulnerable. And um, this is our way to have some agency to do something and to to be loud and and proud about our position and um unapologi unapologetically ask for reform. And it's long overdue. Thank you so much. We love you, keep coming back, and we'll see you next time.

Don Priess 1:08:49

Take care, everybody. Bye bye.