The Caregiver Cup Podcast

Healing Through Caregiving: Katie Prentiss on Midlife Transformation and 'Wake Up Maggie'

• Cathy VandenHeuvel • Episode 237

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What happens when a devoted caregiver and mother of four decides to pursue a midlife career change into acting? Join us for an engaging conversation with Katie Prentiss, who shares her personal story of caring for her mother with frontotemporal dementia (FTD) while raising her family. Katie opens up about the emotional and practical challenges she faced, the tough decisions she had to make, and the financial strains of long-term care. She offers candid reflections and practical advice for those navigating the complexities of caregiving, emphasizing the importance of presence, touch, and remembering the person beyond the disease.

Katie's journey is not just about struggle, but transformation. After her mother's passing, Katie found healing through acting, culminating in her upcoming film, "Wake Up Maggie." This creative endeavor serves as a tribute to her mother and a heartfelt homage to caregivers everywhere. We delve into the film's narrative, a mix of struggles, joy, and humor, and discuss how this project aims to raise awareness about FTD. Katie's resilience shines through as she shares her gratitude for the opportunity to tell this story and the connections she's made through storytelling and filmmaking.

Throughout the episode, we explore the profound journey of caregiving and the importance of being present during moments of crisis. Katie emphasizes focusing on positive moments amidst the challenges, drawing parallels between caregiving and parenting. We reflect on the shared experiences and the beauty and laughter that can be found in difficult times. To close, Katie invites listeners to follow the progress of "Wake Up Maggie" and offers resources for those affected by FTD, reminding us all to prioritize self-care and connection.

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Speaker 1:

Well, welcome, my friend, to another episode of the Caregiver Cup podcast, and a podcast where we celebrate the unwavering spirit of caregivers from all walks of life. With that being said, today we're honored to interview Katie Prentiss, a passionate actress, dedicated caregiver and an inspiring storyteller. Katie bravely shares her personal journey of caring for her mother, who battled frontotemporal dementia FTD. I don't even know if I pronounced that right, but I think I did. She delves into the immense challenges she faced, the hard decisions she had to make and the profound lessons she learned along the way. Through her story, katie highlights the emotional toll of caregiving and the heart-wrenching experience of loss. What sets Katie apart is her remarkable authenticity. She opens up about her breaking point and the struggles of raising four children while juggling the demands of caregiving. Her candid reflections provide a raw and relatable perspective for anyone navigating similar waters. Additionally, katie offers practical advice for managing caregiving when life feels truly chaotic, and she shares strategies that helped her stay afloat during the toughest times. And they are so simple but so important. But Katie's story is also one of transformation and hope. After losing her mother, she embarked on a midlife career change into acting, finding healing and renewal through her craft, her upcoming film Wake Up Maggie serves as a heartfelt tribute to her mother and aims to raise awareness about FTD, offering support and inspiration to other caregivers navigating similar journeys. So join us as Katie Prentice shares her remarkable story of love, resilience and reinvention, discover how she turned her personal struggles into a powerful mission to help others and get a glimpse of her inspiring new film that promises to make a meaningful impact into the caregiving community.

Speaker 1:

Stay tuned for an episode filled with courage, compassion and the enduring human spirit. Enjoy the episode today. Or enjoy the episode today. Well, welcome, katie, to the Caregiver Cup podcast. I know from a listener perspective, everybody welcomes you with open arms and we cannot wait to go ahead and hear about yourself and your story. And I don't know what the project is called, but I'm going to say passion project, so. But I'm going to let you discuss that as we move forward, so welcome.

Speaker 2:

Thank you, Kathy. It's an honor to be here.

Speaker 1:

Yeah. So tell us a little bit about yourself first, and then we'll jump into your caregiving story. But let's learn a little bit about Katie first.

Speaker 2:

Sure, sure, I am an actor and filmmaker. That is a second act career for me. It wasn't something I've done my whole life. I am also a mother of four children, and my husband and I, our children and our two dogs live in Portland Oregon, and we've been here for about 16 years, but I've lived all over the country, so that's a little bit about me.

Speaker 1:

Yeah, I was wondering where you were at. I didn't know if you were in the being an actor. I did actress. I didn't know if you were in the area or but you're out on the West Coast, which is probably the important piece as well. So, yes, Wonderful, Wonderful Boys or girls.

Speaker 2:

We have three sons and one daughter. Ok, so my daughter is third in the order.

Speaker 1:

So OK, ok. Yeah, I raised three boys myself but never got that girl. But I have two grand girls, so I take advantage of that too. So that's so sweet I love that.

Speaker 2:

Yeah, boys are so fun and just a different category of their own. Yeah, they are Definitely definitely.

Speaker 1:

Well, tell us about the that your caregiving story because I think that's important piece. Now you are a caregiver with four kids, but all of a sudden I read that your mom was diagnosed. So tell us about that.

Speaker 2:

Sure yeah.

Speaker 1:

Caregiver for your mom.

Speaker 2:

Right I. So just to give a little bit of context, we I, we lost my mom about eight years ago. So this journey was, it feels, like a longer time ago now and I think back and think, oh wow, I was in my late thirties, like raising four children. They were in elementary school and my mom started exhibiting some odd behaviors. She started describing things that at first I just she lived alone and at first I just thought something was off, like with where she was living, or something like that. But as her scenarios became a little more wild and extravagant, I started thinking something was really wrong. So this was probably when she was right, around 60 years of age. So I think she probably had things going on in her fifties with what she was diagnosed with. So anyway, all of that to say it was kind of we were propelled into this.

Speaker 2:

My sister, brother and my mom were all living in Georgia at this point and I was already in Portland, um, and we were like we need to take mom in some things up. Maybe your meds are off, or something like that. But what we discovered after a while of different doctors, different appointments, is that my mom had a rare type of dementia called frontotemporal dementia, so I'm going to call it FTD in our podcast for those who haven't heard of it before. Ftd is what Bruce Willis and Wendy Williams have recently shared with the public that they're diagnosed with, also just to give a little connection. But it was one of those. I know everyone's caregiving journeys are different and some of us, you know, have kind of a slow roll into it and a long journey. Mine felt more like a catapult, like what do we do now with mom? Because her very first appointment the doctor said she can't drive and she can't live alone. She has some sort of delusional disorder.

Speaker 1:

I was going to ask you that. Oh my gosh. Okay, so what does that?

Speaker 2:

mean Right, exactly, exactly. And so my sister and I immediately were on the phone like what do we do Like this, like you're sending an appointment and your person, you're told that your person can't live alone or drive it. Okay, like this was I don't remember what, how many years ago, but this was definitely in this month of the year, cause I remember my sister and I kind of both saying, well, she can come stay with us, like she can. We were both like juggling little kids. Mom was still like wonderful to have around and like helpful, and so we were kind of like, yeah, that's great, okay, she can live with us. This is weird, we don't know what's going on.

Speaker 2:

My sister ended up taking her in and we were like let's get through the holidays and we'll kind of figure out what's what. And my sister proceeded to take her to different doctor's appointments. Eventually we got the diagnosis of frontotemporal dementia. Just for awareness, it typically can take an average of three and a half years to even get that diagnosis. Really, because the exhibiting behaviors and things that happen with people with FTD are often misdiagnosed and misinterpreted Because people are younger, often with it, younger, often with it it's. I've heard everything from menopause to um oh, your person's an alcoholic. To um the depression, because there's like um personality shifts often. So it's so unfortunate because a lot often families are really confused and frustrated with their loved ones because of the behavioral changes that they're exhibiting.

Speaker 2:

And if they knew it was FTD that shifts everything, and how?

Speaker 1:

you relate to someone. How did they diagnose it? Did they do scans of her brain or how did it officially get diagnosed? Because I don't know a lot about FTD yeah, a lot of people don't, but we're hoping to change that they did.

Speaker 2:

Eventually my sister took her to a neurologist and they did a brain scan and that was when we first heard the term FTD and my honest confession is even hearing it. Then I was kind of like, oh okay, mom has some sort of dementia that's in her frontotemporal lobes and that was all I could comprehend at that point. And you know, back then I was like, oh, alzheimer's, dementia, it's all kind of the same world and I don't know. And so often with caregiving, I don't know. Some people always amaze me when they're able to dive into research and knowledge, and you are one of those people to me, kathy, like the way you were able to pivot your life and dive into caring for so many people in your story but also diving into becoming a helper even in the midst of it Wow, that inspires me so much. I feel like I was just dealing with my own denial and coping in my own ways.

Speaker 1:

But you know, I think with that type of diagnosis it's like you can't see it. It reminds me of when my dad had pancreatic cancer. He denied it for months because he said I don't feel sick, I don't feel sick, and then all of a sudden, bam he was sick. And I think that you were probably going through the grieving process at that time and you didn't even know it Totally.

Speaker 2:

Totally, Totally Like.

Speaker 1:

I think you're just dealing with the crisis of how do we support this person?

Speaker 2:

we love and ourselves, and that coping looks different for everyone. For our story, thankfully, my sister was able to care for my mom for two years. My mom lived with them and my sister was able to care for my mom for two years. They my mom lived with them and my mom was declining fairly quickly with them and they were reaching their max. They were feeling like they kind of had gotten to their level of ability to care for mom and we're considering like what their next steps could be.

Speaker 2:

And I was out Oregon coast like thinking or the West coast in Oregon and thinking like I can't, I need to be in person with mom, I need to be with her and have her physical presence in my life. I can't cope with the thought of her going to a home in Georgia and just you know, doing the math of how often would I actually even be able to see her in a year. So my husband and I made the decision to have mom come out and live with us, and so we I'm I'm extremely thankful to have spent mom's. It was her final two years that she lived with us in Oregon. We were able to keep her in our home for about six months but honestly, like even in the very beginning, when she first moved in, I realized she was way more progressed than I knew.

Speaker 1:

Can you tell us what it kind of looked like for us? Sure, what did you see, or what actions did you see, or what?

Speaker 2:

behaviors. Yes, so with my moms. There's different variants of FTD and there is a behavioral variant that some people have that really changes their personality. They may go from being really angry to like jovial. They might go the other way of. A lot of times people with FTD get arrested or they drink too much. There's things that happen. It really. It takes away your compulsion control and it shifts your personality control and it shifts your personality.

Speaker 2:

For my mom's particular strain of FTD, she had primary progressive aphasia, which is the loss of being able to speak. So my mom, when she came to live with us she was already speaking very little. She would often whisper. If she did say things, she would repeat phrases. She often said okay, okay, okay, or she would say let's go. She always wanted to go somewhere. So that's a really common trait. With the primary progressive aphasia strain of FTD there's also Lewy body dementia, which is more of a physical manifestation. So the thing that I've learned with FTD is often the beginning strain of whatever type you have, will morph into each other. So my mom, by the time she came to live with us, was already experiencing incontinence, but I didn't know that she was wandering at night. She was very food and beverage fixated pantry, like eating everything and drinking every liquid, like if you had a drink out she might walk by and just consume it.

Speaker 1:

Oh my gosh. So I can't even imagine you trying to take care of your children and your spouse and you and having to watch her probably every minute.

Speaker 2:

Yeah, it felt like that and and trying to help the kids understand, you know, because those behaviors can be hard, you know if someone is eating everything or drinking. I had to, I had to get a locking, we had to get a locking bridge, and that feels like almost mean because you're just, you're like keeping someone from food, but it it was. It's just so complicated. Thankfully we were able to. We sold my mom's house and we were able to use some of those funds to hire a caregiver to come in, just so that we could have a break and work and take care of the kids.

Speaker 2:

Um, but even then, I just felt like the pressure kept growing and building because when someone, um, my mom, was wandering and we really couldn't leave her alone, um, she was getting up at night, you know, just, it was just she really need around the clock care and we felt so maxed out. So we, um, we ended up getting involved with a program that helped us with connecting us with a social worker, a doctor and a nurse that would oversee mom's care, and they allowed this program allowed her to spend down any money that she had and transitioned her onto Medicaid. Yeah, but even that, the financial, the financials of it all. It's just so maddening too, when someone has a tiny bit of nest egg and then you're just like, why have money?

Speaker 1:

I just interviewed and she'll be on one of our podcasts next week, but she was just talking about she was in the field from a social worker perspective and in the elderly care and she was talking about just the average long term facility is about eleven thousand dollars a month and I can't even imagine that care for your mom has to be astronomically more.

Speaker 2:

yeah, yeah and I was like terrified of it was all so unknown to me and I was terrified of like some sort of like nurse ratchet government. Like I was like this is all we're going to be able to do for my mom, and that's terrifying. And you hear all the horror stories of care homes.

Speaker 1:

Tell me about your mom prior to her getting sick. What? Was she like, Because I think that's the most important piece too, because you feel torn as a caregiver in your own. You're taking care of them in their hardest challenging times, but prior to that, I'm sure she was a lovely lady. What would tell me about her?

Speaker 2:

Yeah, I love that question and I think it's so good for all of us to circle back to that. My mom, first of all. My mom was just always kind of a safe place for me, like I think about. Like I could tell her anything. I would turn into the biggest goofball with her just to like shock her and make her laugh all the time. My mom was pretty happy-go-lucky person, lucky person. Um she like, when I think of her in my childhood, she would often like make up little jingle songs as she was doing things. It might be like waiting for the toast in the toaster or waiting for the light to turn green. She would like make up silly songs. Um, she was always like really into crafting and like you know cooking from, and she's like that classic Midwestern girl next door type of person. Is it right that I saw that you grew up in Ohio? Yeah, my mom and my dad are from Ohio and I was there all of my elementary years. Okay, yeah.

Speaker 2:

So the hardy, you know, grew up playing in the cornfields, eating meatloaf and mixed veggies, so my experience for sure.

Speaker 1:

You know, you should have saw Katie's smile and her face just went big when she started sharing about her mom. Because I think that's where we are as caregivers we're in that midst of watching your loved one go through this disease or this pain or whatever, and we do it out of love and we do it out of responsibility and you tend to, in these challenging times, forget who they are really.

Speaker 2:

Yes, and trying to remember, to try and be present with them in that moment and you're seeing, like the pain or the decline that your person is in and there's so many true emotional responses that you're allowed to have. But I think for me one of the most comforting things in my mom's, in my journey with mom, even as she was very declined, it's just being next to her. Oh, God. Yeah, you know, it's like being able to touch your loved one, it's just so special, did she still?

Speaker 2:

recognize you throughout all of it, or was it harder as the disease progressed? Yeah, the one this is such a good question because so many people affiliate dementia with Alzheimer's which is memory, and FTD doesn't really affect your memory. It does affect your cognitive abilities and your personality and your speech and all of that. So my mom wasn't able to communicate, so it was really tricky to know for sure, like what she was feeling or thinking. However, I did see her eyes. You know she would recognize me. You know she would kind of big eyes and she might be okay. You know, just give me a little, a little like a little acknowledgement. So, yeah, I think I think she did that. I think that's a hard piece with this type of thing, though, because you don't know, and I think it serves us to to believe and really believe that they do know.

Speaker 2:

Yeah, yeah, yeah, and that they know you, but maybe they don't know all the the terrible, difficult stuff that they're dealing with Right. That's the optimist in me, yeah.

Speaker 1:

And probably the human touch. Like you had said, that's probably something that they could connect with. You know, and being able to do that, you know, through it all, you had to probably be this advocate, you had to be the take care of yourself. So let's talk about both of those. You know as far as what? What advocacy pieces did you learn along the way from doing the whole process?

Speaker 2:

Yeah, kathy, I don't I. I look at my journey sometimes and I see more of my own journey, humanity and I and I. What I mean by that is, sometimes it's easy for me to see the ways I didn't do the things that I wanted to do, and I know it's easy for all of us to do that. And I will say this like anytime we experience, I'm going to air quote guilt and I'm going to rephrase it into regret. When we feel that regret, I do think that we can comfort ourselves in knowing that that means there was so much love. Yes, regret means love.

Speaker 2:

Advocacy I think about my own life. So my really true caregiving journey was about two years with mom. Yeah, so I see that because it was short. I look back and I think there was a contraction happening in life of where I needed to pull back. Advocacy is just doing that, just like saying it is okay for my life to feel somehow smaller and like social and all the ways that you kind of have to contract when you're caregiving. Maybe I'm working less, maybe, um, I'm doing less with friends and whatnot. I'm doing less with friends and whatnot. However, it's what I need in this moment.

Speaker 1:

You do, you do and just yeah, it's just amazing how we mostly women, because mostly the women are the ones that are taking care of mom and dad Not saying that the men don't, but you're just throwing into this with trying to figure out and navigate the waters and you have to be this person that's going to be there for your mom, but then you also have to keep yourself afloat at the same time. I'm so glad that I heard that you got a doctor, a social worker. You got the resources that you needed to go ahead and try to figure that out, but then also, in that chaotic time, you just did enough to probably just thrive and survive.

Speaker 2:

Yeah, it's, it's just. You know, I think for me. I just felt I felt like the, the program we got affiliated with, felt like a godsend. It felt like I didn't feel like I was doing a good job researching and knowing and whatever. And then that fell into my lap through like a circumstance where I had to take mom to the doctor and I was just like floored. You know, yeah, it's, yeah it's, it's tricky.

Speaker 2:

I was thinking a lot about this journey, how, how familiar it felt to me in my own um child birthing years of that similar feeling of you have a baby, you get pregnant and you have this knowledge that your body's not fully your own, that you are caring for this baby. And I remember thinking about all the changes and thinking like I am letting go of what I want your body, expand and all of that and and like to give this life. And then, when the baby's born, there's a stillness and quiet and need to contract again, pull back from life and keep things easy and like, give nurture and growth where it needs to happen, give healing to your own body as your child is growing. And I was thinking about my season with my mom was similar to that of like, even though I was watching her decline, there was still this like this chapter is not fully mine and I can give and know that it's to support another life in a similar way.

Speaker 1:

That's a beautiful mindset, because I think that, instead of fighting it, you just embraced it and you just let it happen. And I think that, yeah, you have to. You could drive yourself crazy if you try to go ahead and do too much. I mean, I remember the same thing with myself is I can't keep. I couldn't just keep doing my corporate job and doing all of the things I had to do and then shove in and, no disrespect, shove in care for my dad and shove in care for my husband and expect me to just be this engine that could all the time you can't.

Speaker 1:

You have to go ahead and take a step back and saying this is a different season of life now for me.

Speaker 2:

Yeah, and that's so hard on our identity too, because you know you go to work and you feel like you're contributing and like your value and all of that feels like heightened, and then you caregiving, you feel like nobody even knows, like nobody knows Like I, and I'm just trying to breathe here. I want to be clear that I didn't arrive to that beautiful, peaceful analogy without kicking and screaming that I shared.

Speaker 1:

Me too.

Speaker 2:

Me too, there is a visceral memory that I have of me standing in my living room. I could have physically torn my walls down, like that's how.

Speaker 1:

That's human, normal, human behavior.

Speaker 2:

A hundred percent, a hundred percent, you know. And I remember just screaming like I don't want this. It was more internal, but I just was like I could literally tear this walls down with my fingers. I'm so mad at the circumstances right now. Yeah.

Speaker 1:

And then imagine how your kids fell. The whole probably everybody felt that way.

Speaker 2:

Yeah, yeah. And and you like reading some of your story, thinking about how you just got one wave after the other with so many things and I, I think for me like standing there clenched you know, screaming metaphorically I don't want this. And I remember almost like seeing myself and thinking how is that changing anything? Yeah, but you needed to get there, katie, I did. It's like having that moment and then realizing like how it didn't really change anything or control anything, and then it's like, oh, the only path through this is through acceptance.

Speaker 1:

Yes, yes, yes, and that's such a hard journey to be on as we're both drinking our water or coffee. I'm going to drink my coffee.

Speaker 2:

So cheers to that, it's probably cold Cheers to that for sure.

Speaker 1:

Let's transition now with you know I think that you know I'm looking at all of your pieces that you've been. You transitioned in midlife to being an actress, which is just phenomenal. But you're working on this new film and I would love to hear how this story and how this journey now got you to the film. And is it called Wake Up, maggie? Yes, it's called.

Speaker 2:

Wake Up, maggie. Yes, let's hear about that. Oh, thank you for asking. I am so excited about making this film and I feel like, again, if we take this analogy of contraction with caring for my mom, when I let go and had to say goodbye to her, I feel like I think her gift to me was thinking about how I wanted to live my life big and I wanted to love big. Um, so also there's there's two parts. One is I feel like, oh, I have space to expand now because this caregiving journey that I experienced with mom is is over. Um, that I experienced with mom is over. Who knows when we'll get to CareGive again, but I have this moment of this new chapter where I can expand.

Speaker 2:

And so I started acting and started filmmaking and I think in those years I also started deeply processing my own fear around getting FTD, which I was in major denial that there would be any kind of genetic strain for me. But then my uncle was diagnosed, my mom's brother. So there is this reality that I'm living with and I would like to do the testing in the future and contribute to research to find out. Future and contribute to research to find out. But you know having when you watch someone go through something difficult like FTD or anything that you witness a loved one go through, I think it's probably common to fear that happening to you because it is traumatizing. And so I was already fearing it. And then my uncle got it. I was like okay, this is likely that we have a genetic strain and I again, it's that control, like I don't want that to acceptance because I had to, I had to make peace with that. Like what would you do if you knew you had it today? Like what would you do? Like what would you do if you knew you had it today? Like what would you do? And I thought, oh, I would make this movie and make this movie and I would live my life and love as big as possibly, as big as possible. So here we are.

Speaker 2:

I'm making Wake Up Maggie. This is a movie that is I would call a love letter to caregivers, is I would call a love letter to caregivers. I hope that all of you listening will feel seen and less alone in your journey. Wake Up Maggie I'm also calling a coming of middle age film, which we have a lot of coming of age movies and I love them, but we need more coming of middle age. So it's about the journey Maggie is our main character and she's named after my mom but her journey of moving through midlife thinking she can control everything. And she kind of does. She has it all like tightly wound until her estranged sister finds herself in some trouble. She gets arrested and Maggie has to decide whether to enter in. When Maggie does, she realizes there's more going on, and so it's about Maggie's life being catapulted into caregiving and just the unraveling that happens with all of that. But ultimately my belief and my hope to show in this film is that unraveling can lead to our own good if we can move into acceptance.

Speaker 1:

So it's such a perfect piece. I mean I think it is. So it's such a perfect piece. I mean I think it is and it is. Maggie, are you going to focus on the FTD piece there?

Speaker 2:

Yes, yes, that's good too.

Speaker 1:

The awareness piece will be so good for everybody.

Speaker 2:

It's so good. I feel like the large umbrella of this film is that it's going to be for all of us who understand how midlife makes us pause and evaluate our lives. Then the next umbrella is caregivers. Anyone who's ever been a caregiver is going to relate deeply to this film and just the true, real life, very grounded struggle that we find ourselves in, but also the joy and, like, the laughter that happens in the middle of it too. It's not just a. It's not just a depressing film. I promise yes.

Speaker 1:

No, it's like I I'm laughing because there's so many fun little humorous memories that I have of my dad and my mom and even my spouse. When you know he, when he, anytime my spouse would come out of anesthesia. He's just crazy and he's not that way ever, and some of it I couldn't even say out loud because it's just so intimate and crazy.

Speaker 2:

Yes, Exactly I mean. My belief is you have to laugh. If you don't laugh, you might as well just crumble up in the corner and die. It's like let it out like we can. We can find joy and beauty and hope despite it all, and that's a great message, that's a great message wake up.

Speaker 2:

Maggie is going to be so beautiful. We're planning to film early in 2025. So it's right around the corner and we're just currently working on growing our fundraising, and then we'll be hiring in our cast and crew and all of that just leading up to production. So it is such a joy. I cannot believe that I get to work on something that brings me so much happiness and creativity and that I truly believe is my calling. It's like healing to me and I think it's going to be healing and hopeful to so many.

Speaker 1:

What a privilege. Yeah, and they can go to wakeupmeggycom. Sorry, my dogs are barking. Can you hear that? I didn't hear yours, but mine were just barking too. You can't hear mine? Good, mine aren't barking because somebody just rang the doorbell and they can just wait Always right, always yes.

Speaker 2:

Yes, wakeupmaggiemoviecom is where you'll find us. I'll put that in the show notes as well.

Speaker 1:

Thank you, yeah, I also saw that FTD. Is there a website for the?

Speaker 2:

disease. Yes, yes, yes, highly recommend you can go to TheFTDcom, I think it's the Association of Frontotemporal Dementia.

Speaker 1:

Okay.

Speaker 2:

They're very helpful, resourceful site yeah, there's also. I would highly recommend Hilarity for Charity for caregivers. If they don't know that organization, that's beautiful. And if you want a specific source for FTD, there's also Remember Me Podcast, which I just have to give a shout out to those ladies because they highlight FTD specifically in a beautiful way.

Speaker 1:

Perfect, perfect, because I think that is just an important piece. Like you had said, we never know when a loved one may be in that dementia phase where we need to look at all of the avenues to try to narrow it down and trying to figure out what they're at as well.

Speaker 2:

Exactly oh my gosh.

Speaker 1:

I just have two more questions. I always do a couple of rapid-fire questions at the end to help the caregivers understand your perspective. If you had advice for a new caregiver and they were coming into the caregiver space and it may be FTD, it may be something else what advice would you have for them?

Speaker 2:

I think one is find some source of community, because it's very easy to assume you're all alone, and knowing you're not just soothes so much. So whether it's one person that understands, or a support group or an online group of some kind, yes, find that.

Speaker 1:

I agree I agree.

Speaker 2:

And then the second thing I would say is look for that we can give ourselves love and care in such small little ways, like a nice, beautiful lotion to put on your hands or a really nice glass of water that you intentionally drink with like focused thought. You know, it's like taking those moments of even if it's 10 seconds a minute where you just sit there and say this is for me. I'm going to enjoy this moment.

Speaker 1:

I love that relating that object or that smell or something to being able to go ahead and do that. I love that idea. I've never thought of that. But yeah, because it doesn't have to be, because when you use the word self-care to a caregiver, they kind of like right, it's another task on my list, how am I going to get that done?

Speaker 2:

And it doesn't have to be that much, no, no, something simple, so simple, like like. Honestly, like some of the times I've had, I've literally used lotion and anytime I'm feeling like my anxiety raise, just kind of give myself a little hand massage with it. Even in the midst of it all, it's just subtle and helpful.

Speaker 1:

If you had to. I want to ask you this, and it's kind of a two-part If you had to think about one of your most challenging times in caregiving and then look at it as a piece that you had figured out and you're most proud of, I want to ask you, what are you most? I mean, you talked about that, that pivotal moment where you were ready to tear the house apart and then came to the acceptance. But do you have any other pieces that you know? You had a challenge and then you, you know I'm I'm proud that I, I did this or did that, or felt that way or accepted it.

Speaker 2:

Yeah, I think what comes to mind with that question is any of those moments where I found myself feeling like I was being myself, in ease and acceptance in the midst of it, allowing the beauty of the world to still be seen by me. You know what I mean. Like it's so easy to only see the hard.

Speaker 1:

I know what you mean because, yeah, be really focusing on. I always tell people or tell caregivers. You know we see the negative, but there's so many things that happened throughout the day that we should be proud of or that we should be focusing in on. Is that kind of what you're thinking about there?

Speaker 2:

Yeah, there's that there's like allowing yourself to see the beauty, to find the laughter, to like smile in the moments. I think I'm proud of sharing some of my story Like I would do so little, but I would like post a little Instagram post and hashtag something about dimension. I would. That's how I found my community, um, and then I'm just. I think the other thing that stands out is just being maybe this sounds, I don't know I think being able to let go, um, I think there's a really, really poignant moment with my mom where I got in bed with her and I said it's okay to go, yeah, and I think, if we can move to those places of letting go, of trying to control and really just stay present, because it's so easy to not stay present when you're in crisis, but to stay present. So any of those moments where I was able to just be with her and be present in that moment, that's what stands out to me.

Speaker 1:

Right, because sometimes we at least for me it's like, oh my gosh, I got to do another piece with her, I have to go visit her and it is an extra step. But then you look back at it and you're so glad you did.

Speaker 1:

You're so glad you did and being present with them. Even when my mom was in her last few days of she was I don't know. She was in this agitated state and she didn't even want to talk to me. She was almost like she was mad at me, but I think in a way her gift was telling me to just let me alone, let me go. You need to detach Kathy. And I just held her hand and she squeezed it and I knew then she was okay, you know, and just all those little pieces, right?

Speaker 2:

It's like sometimes we do things for ourselves more than for the person that we're caring for, and I think that you articulated that really beautifully where it's so often our people know when it's time and they kind of do want us to give them space. It's wild, but yeah, that presence is huge, like staying present in each moment and not catastrophizing or avoiding.

Speaker 1:

I know it. Oh my gosh, I'm a big journaler, so I can go back and look at some of the journal entries that I put and some of them were just very simple about. I feel scared, I feel angry, you know, and I can see that. And then there were some days where I just kind of, for lack of a term, threw up in the journal and wrote everything down. But there were some days I could tell I was at my wits end and I didn't want to write anything and so it was just words. You know, totally, yeah, it's just that piece.

Speaker 2:

Well, I think you are a warrior, Kathy, like you are. I think there are people, there's so many people I've connected to in, especially in my filmmaking, because we're all like connected in this way, and I am so honored to meet you and I love meeting people who I think are big hearted warrior people and we often get there the really hard way.

Speaker 1:

But I'll tell you something, a secret about me. I am not very good at nursing and I know that I'm not supposed to be so negative about that, but I mean I pass out if my dog gets a shot in the vet. So my husband he had his knee surgery and I had to change a drain tube and I was like gagging. So I can do all of the administrative stuff and the helping stuff, but when it comes to doing any type of you know, blood pathogens or nursing, you might as well forget it.

Speaker 2:

Kathy's not engaged. Oh my gosh, that's the thing about caregiving is. You don't get to choose like which activities you actually do.

Speaker 1:

You just go do that you're like it's kind of like parenting to parenting to your child wakes up in the middle of the night and they throw up in their bed. He's like you have to figure it out and do it so ridiculous, like I know.

Speaker 2:

it's like I always think about that with mom, with being a mom. I'm like we have to do all these categories whether we feel good at them or not, and that's the same thing with caregiving. It's like I get it, that's that.

Speaker 1:

Thank goodness my sister was a CNA or certified nursing assistant, so she could help me do some of those things. Because, yeah, and so we tag teamed a little bit, especially in the last few months of both of my parents' life. It's like, oh my goodness. But well.

Speaker 1:

I can't wait. I hope I'll put the website out there for the Wake Up Maggie movie so people can go ahead and start looking at it. I know that you're taking donations and trying to fund this and self fund it, so people can go ahead and look at that as an option if they have the financial capability to do that. And I think don't you have an Instagram page with Wake Up Maggie so we can kind of follow the progress?

Speaker 1:

I can't wait, we'll go ahead and keep following you and seeing how this movie is going to go and where it's going to evolve, because I think, like you had said, it's going to touch so many caregivers out there.

Speaker 2:

I know it will. I know it will, and I think that's the beauty of making art. That really matters to you is like, I think if one person's life is better for this work I'm doing, then it's such a huge reward, oh my gosh, what a perfect way to end the podcast episode too.

Speaker 1:

I think that's just great. So I personally thank you from the bottom of my heart for going ahead and doing this movie, because I think this is just going to create more awareness, and I am so amazed now at how caregiving has become a platform for a lot of people and the more we can go ahead and shout it out to the top of the world and help each other through it. I think this is a great way. So, yes, I can't thank you enough. Oh my gosh, I get to meet a superstar actress, director, filmmaker.

Speaker 2:

You're so cute. I think you're a superstar, honestly.

Speaker 1:

I'm sending positive vibes your way. So, oh my gosh, I'll be thinking of you early next year, so thank you.

Speaker 2:

Yeah, we'll take all the energy and love we can get.

Speaker 1:

Yes, wasn't that an incredible interview with Katie Prentice. I personally learned so much about FTD and the immense challenges that caregivers face every day. Katie shared her experience as a sandwich caregiver, which I can't even imagine, juggling the responsibilities of caring for her four children while also caring for her mom. Oh my gosh. Her honesty about reaching her breaking point and the strategies she used to give herself a break, like hiring her nurse, were truly eye-opening. Katie also highlighted the importance of connecting with resources such as the social workers, the doctors and nurses, and really her financial struggles and challenges along the way. She bravely I love this because she bravely discussed the fears that every caregiver has about long-term care. Dr Ratched or Cratchit, or whatever she had said. I can so relate to it, and one of my key takeaways was her powerful insight, and I want to repeat this again for you. She had said when you feel regret, I do think that we can find comfort and we can comfort ourselves in knowing that this means that we love them so much. There was so much love, and I think that's what we have to lean into when we're worrying and when we're feeling regret, when we're feeling guilt. Yeah, we do feel that way because we love them so much and I thought what a compassionate way to go ahead and tell our brains it's okay to feel that way. This resonated deeply with me and underscores the profound love that drives all caregivers. Throughout her journey, Katie realized that she needed to push back on some of her priorities journey. Katie realized that she needed to push back on some of her priorities leading to her transformation into her identity, because we all change as caregivers. She described this realization as a beautiful, peaceful analogy and I love the fact that when she said she got to that peace and that realization when she actually listened to herself and achieving change without kicking and screaming, Focusing on her healing, Katie embraced the memories and look what came out of it. Look what she is evolving from all of that, all of the challenges and that experience in her midlife career change challenges and that experience in her midlife career change. And now she's creating this movie Wake Up, Amy Maggie next year, which is really going to be just phenomenal, dedicated to caregivers, dedicated to the FTT diagnosis and dedicated to the transformation you can get after caregiving.

Speaker 1:

This conversation got me thinking about you and your caregiving journey. It did. Where are you in your journey? I want you to think about it. Where are you in your journey, what resources are you tapping into and they don't have to all be financial resources you know you think about. I don't have enough money, but what resources are you tapping into, what is your current realization and how are you working through it? I want you to think about these three questions Again what are you, when are you at in your journey, what resources are you tapping into and what is your current realization and how are you working through it current realization and how are you working through it? I want you to send me a text message and share your key takeaways.

Speaker 1:

If you're on my email newsletter, I'm going to put these three questions in there again and I want these to hit home with you. And it's okay if they're sad, frustrating, that's okay, because that's the current realization you're in right now. But by asking yourself these over and over again, you're going to start realizing and start seeing the identity you're shifting into. Remember I am here for you. If you ever feel stuck or need support navigating a challenge or the challenge or the season that you're in, I want you to reach out to me for help and this can make all the difference. You can go to kathielvancom. Forward slash work with me. You don't have to go through this alone.

Speaker 1:

I can't wait to end here. I can't wait to see next year's movie. Oh my gosh, we're going to have to all watch it and then we're going to have to come and do an episode on it and talk about it. Remember, it's Wake Up Movie. If you want to follow her journey along the way, it's called wakeupmaggiemoviecom and there's all sorts of things that you can do to support her, but it also gives you current updates on her movie as well. So thank you for joining me on another episode of the Caregiver Cup podcast. My advice to you right now is stay strong, stay connected and remember that your story, your realization, matters right now. And remember also, don't forget to look at how full your cup is. That cup needs to be full for you to be the best caregiver that you can be. Until next time, my friend, take care and keep supporting one another and keep looking at ways to support yourself. Bye for now.