This is the whole Care Network. Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Health Care Network.

 

We’re not close to a cure, so what do we have instead? We have community. So let’s bolster our community because we are who we have.

 

Caring for aging parents or other loved ones while working, raising children, and trying to live your own life, Wondering how to find the time for your personal health and happiness? Well, you’re in the right place. Welcome to the Happy Healthy caregiver podcast, the show where real family caregivers share how to be happy and healthy while caring for others. Now here’s your host, family caregiver, and certified caregiving consultants, Elizabeth Miller.

 

Hello, thanks for tuning into the Happy Healthy Caregiver podcast, which is part of the whole Care Network. If this is your first time listening and trying out the show, welcome. So glad that you are here. This show is produced biweekly to help family caregivers integrate self-care and caregiving into their lives. Each episode has an accompanying show notes page. We want to fast track you to the resources that could help you. So if you want more details about the topics, the products, and the resources we’re going to. Speak about or you want to see more related photos, you’re going to find that all on the show notes page.

 

So head over to the website happyhealthy Caregiver.com. Underneath the podcast menu, click the image or the episode number for today’s show. We’re also going to put the link to the show notes in your podcast platforms episode description, so you can easily find it there. If you’re not on the happy healthy caregiver email list, what in the world are you waiting for? Every Tuesday, you’re going to get something in your Inbox that’s going to have something happy, something healthy, something care related. Plus we’re going to talk about upcoming events and special offers, so don’t miss out on that.

 

It’s bit. lee/HHCnews to subscribe. I also don’t want you to miss out on the cruise, the self-care at sea cruise that we’re doing this October. We have tried to remove as many of the barriers that we could think of that caregivers could have, giving you lots of notice and so that you can make a plan for your care. recipient for the backup care. We have a fabulous trip planned on a Norwegian cruise line. It’s a brand new ship called Aqua. We’re going to some great destinations, Dominican Republic, the US and British Virgin Islands, the Bahamas, and I hope that you’ll come and make memories with us.

 

Make memories with me and some of the other care influencers that in this space, we’re going to have a lot of fun on the cruise. You can see us as much or as little as you’d like. Invite all your friends and family if you’d like to to have them join along. You can find out more at bit. lee/HHC Self-care cruise. I’d like to thank our episode sponsor, Crazy Comression. Do you ever feel like your feet and legs are exhausted by the end of the day, or maybe you’ve noticed a bit of swelling after sitting or standing for too long?

 

Well, I want to introduce you to Crazy compression socks. It’s a fun solution to keeping your legs feeling fresh and energized. They aren’t just any socks, they’re designed to boost circulation, reduce fatigue, and make a serious Style statement. Crazy compression socks combines top-notch support with bold fun patterns that let you express your personality, whether you’re a nurse, a traveler, an athlete, a caregiver, on your feet all day. These socks will change the way you think about comfort. Head over to crazycompression.com. Use the Happy Healthy Caregiver Community code, which is HHC 20 for 63% off of your order and give your legs the energy they deserve.

 

For this episode segment of what I’m reading, well, some Sometimes I just want to get swept away in a psychological thriller, and the housemaid by Frieda McFadden did not disappoint. Just when you think you have it all figured out, there’s going to be a new twist. It’s a captivating 4 star read. I’m not going to talk a lot about it because I want you to be captivated as well and swept away. And there are more books in the series, but I’m going to give myself a little space between these reads and I’m going to spread them out between some other genres of books I like to read.

 

I’m going to link to this book on Amazon. so that you can check it out and then of course, don’t forget about the free Libby app where you can get free audiobooks and Kindle books and so forth with your library card. My favorite thing that I want to share with you is, um, it’s actually a place. It’s called Chicago. My daughter Natalie has lived in Chicago now for a few years. She’s a NICU nurse at Northwestern and she’s a city girl. She doesn’t have a car, lives downtown, has made some fabulous friends.

 

And I’ve been getting to know the city of Chicago with all the visits that I’ve been on. I’ve been in winter, I’ve been in summer. We try to focus on the outdoor activities in the warmer months and the indoor activities in the winter, and the city has so much culture, great views, nice people, and terrific food. I have eaten so well up there. And Nallie has been a great tour guide. She’s really dove into all the things that she’s wanted to do because her plan was never to live there.

 

You know, for many years. She, um, plans to leave actually later this year and become a travel NICU nurse. So even if you don’t have a friend or family there, I recommend you check out the city. It’s worth adding to your must-see list. You’re gonna want to see the bean, you’re gonna want to shop on Michigan Avenue. You’re gonna want to lay on the beach next to Lake Michigan and maybe take a little bit of plunge in the water. You’re gonna want to go to the Lincoln Park and, and check out the zoo there and take in one of the fabulous sporting events or explore.

 

the various cute little neighborhoods that have their own personality. I really did not expect to like Chicago as much as I do.

 

Let’s meet today’s caregiver in the spotlight. Kitty Norton left her job as an NBC assistant editor in LA in 2016 to return to her hometown of Portland, Oregon to walk, stumble and crawl with her dementia mother to death’s door. While doing so, Kitty authored the Dementia caregiver blog, Stump Town Dementia, writing tales of dementia life which resonated deeply with readers around the world. After her mom’s death, Kitty turned her storytelling talents to creating and directing the dementia Family caregiver documentary, Wine, Women and Dementia. The film honors this journey with her mother, increases awareness of the caregiver side of the equation in dementia, and celebrates family caregivers, letting them know they’re not alone and are Worthy of being seen, heard, and respected alongside their person living with dementia on this difficult road to the end of life.

 

We explore how Kitty built the care community she needed, why caregivers often start care businesses, and how she prioritize social and emotional self-care during 24/7 caregiving. Plus, find out why duct tape might belong in your caregiver toolbox. Enjoy the show.

 

Hello, Kitty. Welcome to the Happy Healthy Caregiver podcast. Hello, Elizabeth, and everybody out there. And I’m so happy to be here. Thank you for having you. Well, this has been, you know, some time coming, so I’m happy that we’re here too. And we’ve done some lives together and some other stuff, but this is the first podcast that you’ve been on Happy Healthy caregiver. We, we always started out with something from the Happy Healthy caregiver jar. I want to get your thoughts on this, Kitty.

 

Uh, let’s see, it says Oh, it’s like there’s like 20 of them that want to come out. We’ll just pick one of these. Uh, it says except what is, let go of what was and have faith in what will be. So these are all things that I’ve collected. What does this resonate with you? Absolutely, absolutely. And this is something, this is almost verbatim to what I tell caregivers who fall into that, oh, you know, I’m losing my person, and, you know, I’m like, stop, stop. What you need to learn how to do is celebrate who you’ve got next to you, is get ready for who’s coming.

 

And to just be happy at who’s gonna be there at the end, because eventually it’s gonna all be over. Yeah, like the present, let’s let’s focus on the present. Oh my goodness. I love that. You’re you’re wise, you’re a wise woman. Well, I, um, I know, I know you, but some people don’t know you and I know you quit your job to care for your mama, um, Gloria, but tell us, set the stage for us a little bit. The filmmaker, Kitty, set the stage for us. Yeah.

 

So, uh, my mom was diagnosed with vascular dementia in 2010, and at the time, my father was going to be her, uh, primary caregiver, and he swore that he would do that and keep her at home until the day she died. Well, unfortunately, my father died rather suddenly in 2016, about my progression for mom. So I had started a new career and had moved down, um, from Portland, Oregon, and I had moved down to LA because it was in the film industry. I was an assistant editor on a lot of different NBC shows.

 

So cool. Yeah, it was, and, and It was like, was it your dream job and then you had to, or was? No, my dream job was to become an editor. And so I was working my way up to that and learning from all my editors. And the final show that I was hired on was the first season of This Is Us. Stop it. I know, but my father died that summer before production, post-production started, so I had to give up that gig. And uh that was hard, but I also I like to tell people, you know, there’s silver lining sometimes in some really strange places.

 

LA had wonderful people. I was doing great in my career. I was getting really far, really fast. But I needed to come home. The Pacific Northwest is where I just understand who I am. I can breathe. I, everything about me is, is resonates in this place. So I always say that’s the last gift my dad gave me. I’ve never been to Pacific Northwest, but it’s on my list and I’m gonna sure look you up and I’ve got other care friends out there as well. I know, it would be amazing.

 

I’d love that. Um, so you ditched the job, you went home, then what happened? Uh, my sister and I just took on take care of my mom, and I moved in with mom. Mom and dad had split level, so it was really easy for me and my boyfriend to kind of take over the basement. My sister works on the Oregon coast. She manages our destination restaurant on the Oregon coast, but she would come in for like 2 or 3 days a week, and she would live upstairs with mom, and then she would go back to her work and her life, and I would go live upstairs with mom.

 

So. You know, the care. Yeah, yeah, it worked out pretty well. And of course, there was huge bumps. At one point we were just at our wits in and we put mom in memory care, and it turned out to be really hard, the hardest thing we’d ever done, so we brought her back home after 213 weeks. Like, OK, memory care doesn’t work for us. Get her back. It’s so hard cause I think we, you know, and people think that it’s gonna be easier for caregivers to do assisted living memory care, but it’s a different.

 

It’s a different Yeah and ball of wax. Like, it’s a big role. You’re still a caregiver, you know, and, and, and it works so well for so many people. I am not bashing memory care or assisted living or any of that, but for us, it was more stressful having her away than having her with us. Um, and you tried it, like, good for you for all for trying it. Like it’s, you don’t know until you try it, right? And you gave it you gave it a good go.

 

Yeah, it was the most expensive 5 week vacation I’ve ever had. It is so expensive. When mom lived in assisted living for a while, um, and then she lived with my older sister, uh, for the last 6 years or 4 years of her life. Um, I, I kept saying it was like we’re buying a really nice used car every month, like a really nice used car. It’s so expensive, and memory care even more so. Yeah. Mom was lucky because she didn’t have really horrible behaviors, cause, you know, that’s the one thing you don’t know until you’re in this world is that if your person is, is struggling with some really, um, aggressive behaviors, those prices just go up and up and up every month.

 

And if it’s really aggressive, you can’t even get into some memory cares until you’re already paying, you know, 14 to $19,000 a month, because They just want you have to go to the places that will take them and your, your options just narrow, you know, do we, do we get paid more if we get um angry people that we have to take care of like. Yeah, my brother’s not a, not a whole lot of fun. I’m a support caregiver for him. He’s got an intellectual and developmental disability, but I’m like, wouldn’t that be nice if we if we got more perks because they were more to handle?

 

Yeah. And in Oregon, maybe I don’t know about Georgia, but in Oregon, we don’t get paid at all. We don’t get paid at all in Georgia. Yeah, some states, and I’ll link to that in case people are like, oh, can I get paid as a caregiver? Um, some states you can rules or you can pay somebody, you know, another family member or somebody to, to do care, but yeah, we’re the same, we’re the same as, as y’all. So how did that go? Caring for Gloria, like how long, how long were you caring for her as a primary caregiver?

 

So 5 years, 2021. And during that time, um, I think it started writing in the end of 2017, so I wrote a caregiver blog. Tell me more. Yeah, this was my self-care. I wasn’t very good at self-care, but, well, that’s emotional self-care. Oh, it was, it was huge, and I don’t even think I started it because they needed something creative. You know, Lexi was here either 103 or 3 days a week. And I could come downstairs and just write and just write about the funny stuff and write about the horrible stuff, and just do like, here’s here’s what a day in the life of dementia is like, you know, get up, pick up poop, take the, get her in the shower, do this.

 

She loves oatmeal. Milkshakes are great at 5 o’clock in the afternoon, you know, just like go through. So it was really awesome for me and I loved creating the images that I would use to kind of Accompany and tell the, tell the story that has the words, but tell it in pictures too. I loved it. I mean, I read your blog in those days. Oh yeah, yeah, yeah, yeah, and um it’s called Stumptown Dementia, it’s still out there. We can, we’ll we’ll link people to that so they can, and yeah, I just, it was um.

 

You kind of stood out in this space, you know that, right, like. I couldn’t find anybody who was telling caregivers what this was like, and I couldn’t find anybody who wasn’t mired in the tragedy narrative. And that’s enough tragedy. But there’s also life and there’s also humor, and there’s also even in some of the worst parts, there’s some really funny stuff that happens. And for us, for our family. We were always, we always had a good sense of humor, and the levity was probably my biggest tool in my caregiver tool kit.

 

So that doesn’t work for everybody, but that’s what it was for us. So I know I couldn’t find anybody telling the stories like I was telling them. It’s that’s super relatable. I mean, I even found When I first started writing on my blog, Happy Healthy Caregiver Early Days, um, and it actually wasn’t even called that. It was called Savvy Sandwicher initially, but I was, I was a little bit doom and gloom. My first couple posts, like they’re still out there, um, and I was literally like, I don’t want to be this person.

 

I don’t, I’m I’m a glass half full kind of gal. Like this is not in my DNA so. Um, I can appreciate that, that you wanted to have that voice. You’ve basically created what you exist that wish existed for you. Yeah, I did. And I had those posts too, you know, I had, I had those ones that were really, really tough. Like, I don’t want my mom to wake up tomorrow. Mhm. What do you do with that? What’s that feeling like? But um, It’s real. Yeah, I also wrote about just the hilarious shit that happens.

 

There’s a lot of hilarious shit and dementia. So that’s OK. Give us, give us a taste. Give us something, give us a taste of like the funny, something funny that happened that um you were just like, you can’t make this shit up. Well, one of my favorite stories actually wasn’t even, I wasn’t even there. It was my sister came home from taking mom to the mall, and they had been walking through Nordstrom’s and this woman had stuck some lotion on Lexi’s hand, you know, the little lotion and perfume ladies, and Lexi was like, oh, this is wonderful.

 

It smells delicious, you know, it’s just great. And she did it to mom too, and Mom just went, Oh my goodness. Let me, let me sample that. And I’m sure, you know, there’s no like, having dementia, like, you know, um, so interesting. And, you know, you, you, a lot of um being a dementia caregiver, like I got through your posts and stuff is that it’s a lot of trial and error. Like, you’ve got to kind of, you get a new problem every hour, every day, and you’re like, OK, how are we gonna address this one?

 

And one of the ones I, um, learned from you was had something to do with um Her wanting to escape out of the car and you you problem solved that. What problem solve that? So mom had a green uh Dodge Caravan and she went through a period where she was opening the door as we were driving. Like we almost lost Mr. Bones, our little dog Mr. Bones, in a kind of a traffic jam one day, cause mom was opening the door and Barnaby’s like, all right, time to go.

 

They’re like 4 lanes of traffic. And it wasn’t until I drive really fast, and I’ll tell you what, you’re in a green Dodge Caravan from like 1995. Cops don’t even see you, and those things can haul. So I would, I know I’d be driving across the mountains to get to my aunt Jenny and drive my mom back and I’d You know, make it there in 2 hours and 15 minutes, which was just unheard of. Well, mom decided to get out of the car one day while we were doing about 75 miles an hour, and that was when I was finally like, OK, we need to figure this out.

 

And I can’t remember what I tried until I finally landed on. I’m just gonna duct tape the damn door up and just see if that works. And visually, mom could not perceive the gray of the duct tape against the kind of gray green of the door. So she never even realized, yeah, like not even there for her anymore. And then you’re like, what next? I mean, duct tape really can do a lot of different things. Exactly. Who knew? I had to make a, I called it the ghetto gate out of a cardboard to stop mom from going down the split level stairs because she was getting so unsteady on her face, on her feet.

 

So we had these huge, you know, Amazon boxes that I duct tape all together and put over. You do what you gotta do. Yeah. Yeah. It does, it does a lot of, and I know like going back to the blog like you wrote it because you, it was an outlet for you, but what was kind of the unforeseen part of the blog that you maybe you weren’t expecting? Oh yeah, well, I mean, of course it’s exciting when anybody reads your stuff or go, you know, comments on it, but I didn’t expect to make friends all over the world.

 

I didn’t expect to have other caregivers. I didn’t expect to create a community. You know, and we were never huge. It was a small community, I think at the most we had like 500 people on our mailing list, but things would get shared, um, and people would comment or people would email me or, you know, and I was just like, I’m so glad you’re here. I’m so glad this is helping you in your journey. You know, we’re all different. Stuff that we do isn’t gonna be perfect for you and stuff you do is gonna be perfect for others.

 

But let’s just share what we’re doing, so everybody knows what they can kind of try, or it can, you know, spark something in them, like, that’s not gonna work for my household, but that gives me an idea of something that might. Exactly. And that was amazing to just have these. The support group that I didn’t even know I was creating. Community is everything. I mean, that’s why on this podcast, we only talk to caregivers, real family caregivers who have been caring in the past or in the present because I, they’re the experts.

 

I want to only, I want to spotlight the experts. And I love, even on your one of your websites, um, we’re going to talk about the Wine Women and dementia, the documentary, but you say until there is a cure, there is community. Yeah. Yeah, and I think When that came to me, I can’t even remember if that was around the film or if I thought about that when I was writing. I’m like, that’s perfect. That’s exactly how I feel. We’re not close to a cure, so what do we have instead?

 

We have community. So let’s bolster our community because that’s we are who we have. And I love it when All of us, all of us either like influencers or or you know, creating influencer is what I call myself, when we inspire others to start telling their story because If you start talking, you’re going to become somebody else’s support. You know, you don’t think about that. At least I didn’t when I started started doing this, or when I started going to forums and stuff like that. I just thought, oh God, I need answers.

 

And instead, I found, well, I did get answers, but I also found that I had answers for other people. Right? How great is that when you have just the world’s worst dementia day, you couldn’t make your person even crack a smile, but you Gave another family caregiver somewhere in the world an idea of something to try, and it worked for them. You know, it’s, it was like, it’s so important to make sure, to understand that you too, somebody’s looking for you because somebody needs what you know too. Yeah.

 

Yeah, like it’s a spectrum, right? And there it’s like, you might be here, but there’s somebody way back here. Maybe like one little tip, one little thing could really just make a, a huge difference in the day and just to be validated, frankly, like, This is hard. This sucks. Like I’m, I’m feeling it too. Um, you know, that’s we do the, uh, I just got off a Daughterhood circle connection call earlier, so a great organization. Yeah, so been part of that one since 2017 and facilitating um once a month and I know one of your movie stars on on Wine Women and Dementia documentary is a fellow daughterhood, Roseanne Corcoran, and also a fellow Col Care Network podcaster.

 

Uh, but, you know, so I like, I feel like the best thing, frankly, out of caregiving, one of the best things has been the people that I’ve met, like the the friends that I’ve made. Yeah. So, so you’re making the friends and then, um, then what happens? Let’s get to the Wine Women and how did the Wine Women and dementia documentary come about? Um, so there were, I mean, If I had the money, I would have traveled all over the world for the next 23 years, just bringing these people who had become so important to me, a bottle of wine and a pizza, or if I’m in Britain, you know, fish and chips or something and just saying, if you open the door, I’m gonna come in for a night and we’re just gonna talk because we just need to process this and and I’m finding it so healing and I think you will too.

 

But I didn’t have all the money in the world, but I did have were 5. Very particular specific caregivers who had become so important to me and we had never met. Some of us had zoomed, some of us had just met each other through social medias and exchanging emails and funny Twitter, you know, support or Instagram or whatever. But they, these 5 always seem to, to come out of the woodwork on one of my worst days. And then, you know, just make me laugh so hard about something that was going on in their life and forget what was terrible in mine.

 

So I wanted them to know how much I appreciated that support. So before mom died, I thought, when this is over, I’m gonna get in the car and I’m gonna go meet these people. If they’re going to open the door again, I’m gonna sit around and we’re gonna talk caregivers back. Yeah, and after I, I got positive there cause that’s pretty smart of you too to think like. Because the stage after caregiving ends is its own caregiving stage, but you had a plan, like you had premeditated a plan that you didn’t you, you know, thought it would be great to get back and fun, but like it also gave you an identity.

 

Yeah, I don’t think I realized it until well after it happened was that I was looking for escape. When this is over, this is so intense and so beautiful and so brutal. Uh, during on mom’s last breath, I want to get in the car and drive away. And I didn’t really think about it like that, but I think that’s how this plan kind of came about. Like, I need to escape. I gotta come back here and finish all the official aspects of somebody leaving this planet, which is a lot.

 

Grief is exhausting. Good lord. But In the interim, I need to get out of here. I need to walk away from this house and, and stop and be in this person for a while. Um, so I contacted these people, 00, and then Before I even did that, I thought, you know, these conversations might be really helpful for other caregivers. Yeah. Why don’t I get, you know, maybe a camera guy and a sound person or a camera woman and a sound person and see what we got here. So, I called everybody that I initially intended.

 

I had a couple of backups that were also really important to me, but weren’t like that top 5, but the top 5, everybody said yes. Amazing. Yeah. So we started, um, planned the production tour for September of that year. Everything happened really fast. Once I got the idea, it was like, this is go, I need these people. I need to put this in place. Let’s do this. Um, I bought, I bought a used RV. I think it’s a ’97. Um, had a good motor, but everything else was falling to pieces.

 

Got that all put back together, slapped Mom’s face all over it with decals and decided that was it. So Barnaby Jones went through with you, your dog, Bones, yes, Barnaby with bones. My friend, uh Bethy came up from LA cause she was a screenwriter and they never have real jobs. So she went on the production tour with me. Um, but we went to Seattle first. Allison Schrier was the first person that we did, and Seattle’s only 3 hours away from me. So we drove up there, did that one in August, and then I came back to look at that footage and make sure this would be something that I would want to see, and it was.

 

And I was like, It’s on. We’re doing. Let’s go. Let’s go. Yeah. So that’s what we did. And shout out to Allison with Zenia TV. Yeah, yeah. Um, we’ll, we’ll link to that to her great, it’s a dementia, um, channel, streaming channel. Um, yeah, you, you came all around. I know you came through Atlanta and I, I believe I even tried to like connect with you back then, but it just didn’t, didn’t work out. But um it’s uh I love the movie, so I got the pleasure of seeing it, I think a couple of years ago at the Care Colloquium.

 

You came. Do you still have your RV by the way? I do, but she needs about $8000 in repair because I named her the Gloria after my mother. He’s got $8000 in repair. So all, all she really does now is sit out in the carport and I have a make it’s like a photo op. The battery doesn’t die. Yeah. Well, I mean, yeah, that’s the thing, like making a movie and traveling all of this is, it’s not cheap, right? So. Um, but you came through Roanoke, Virginia, and I went to the care colloquy and we met there, and we got to see some of the movie for the first time, and I was immediately hooked.

 

Like, I’m not, you know, not even technically a dementia caregiver. And I do think that you don’t have to be a dementia caregiver to get a lot of value out of the Wine Women and dementia documentary. I don’t think, yeah, I don’t think you need to be in the dementia space. I think the end of life journey, whether, you know, it’s your child. Succumbing to cancer or it’s your spouse with, you know, a heart attack or a stroke. I think the journey is very similar. I think the feelings are very similar.

 

Um, maybe not the overwhelmed, the isolation, the, the distress, the guilt, yes, and the freaking guilt, yeah, no humor. Get through it, you know, with community, with humor, with tears, with screwing up big time and forgiving yourself, you know, but I think there’s a lot in the film that Just speaks to people who are in that space, and people who are going to be in that space, who were like, wow, I see this on the horizon for myself or for my parents, or no one’s escaping it.

 

We’re all gonna be needing care or being a caregiver at some point in our life. And many of us will probably Yeah, and more and more, more of us will be serial caregivers. Like we’re gonna have to do this for more than one person. I know I’m on, I’m I’m, I’ve been collecting different care pair people for sure. Um, and you know, I love that you, this gave you purpose. And then you did the film festival circuit, I know for a while, and then something big happened earlier in Um, 2, where you had an opportunity for it to be on PBS.

 

Yes, yeah, that was so exciting. Um, PBS has two distributors that they pull most of their stuff for if they haven’t create co-created it themselves. And we just sent the film in in February of this year. At the end of March, we were notified that they were going to pick up the film. So we have a 3 year contract with PBS. Amazing chose to have the film debut on PBS for this last November, because that’s National Family Caregiver Month. And the Summer, um, looking for, you know, underwriters, people to help us, because I wanted to cut the film down to an hour.

 

So it’s the full feature is 87 minutes, but I knew an hour-long film is much easier for programmers around the country to pick up and put on their schedules. So. I’m one of our underwriters, one of the underwriters who says this is important and I want to make sure caregivers see it because I support caregivers, is happy, healthy caregivers. So, yeah, yeah, delighted to be an underwriter of it. Like, I didn’t even know what an underwriter was, first of all, you had to explain it to me. Um, and also one of my fellow care printer friends, Deb Halacy, for advocate for mom and dad is one, and then I know you got a, um, another underwriter too, but I, um, Care Scout, let’s give a shout out.

 

Care Scout, Care Scout, yes, I, and I’ll link to them too. Care Scout, um, the I, I, it was important for me to do it because it’s, uh, advocacy is story story sharing, frankly, like we are 53 million family caregivers in the United States, but in, but we are Kitty and Elizabeth and Deb, and, um, you know, Cathy, Susan, whatever, and Bill, like so, and they need to share their stories as a form of advocacy so that these things become real and not just numbers. And so this podcast is frankly a form of of care advocacy.

 

So that was important for me to be a part of that. So that first of all, I was excited because I, I already knew I liked it and we had done like an even another virtual cafe where in happy healthy care to see it. The 23st February that the film was out because we were, I think you were helping, yeah, like some of our upcoming festival. Yeah, but I wanted everybody to see it. So now it’s like so exciting that people can go through the PBS app, even if their PBS channel doesn’t carry it, um, and that, you know, they might carry it in 215 years, but you have to watch it at a certain time.

 

You can watch it whenever you want on the PBS. So I, I’m excited to, um, that people have more access to it because they want to see themselves on the screen. We get notifications all the time about, you know, if it’s going to be airing. We had, we’ve already reached 26 221% of the US market. Wow, yeah, that’s huge, um, with the amount of of uh stations that have programmed it. So I’m sure that will kind of start to, you know, go down. It’s a 210 year contract, but now anytime, anytime there’s a caregiver caregiver awareness uh uh date like Friday, February 22st, is National Cargivers’ Day.

 

Yeah, or Alzheimer’s Awareness Month. So then it’s, it’s kind of got to push out to these PBS stations saying, hey, do you want some content for these important, you know, awareness periods? And it could be programmed anytime. So we’re trying to track all of that. We have it on the website, so you can look on the website and get information we’ll link to that too. Yeah. So it’s so exciting. Well, now, I mean, it’s like, it’s taken a lot of different, it’s a lot of work, and it’s a lot of money and you’ve had to kind of, you know, fundraise and and just be, um, you know, committed, just like caregivers, like we’re just have to like committed to the thing.

 

So but I’m, I’m curious, Kitty, like, you know, We met at the care colloqui and we met all these other people in the care economy space who are also, you know, doing care advocacy, creating products, writing blogs. Most of them, if not all of them, have been family caregivers. Like, what is it? Why do we, why do we want to do this difficult journey? of caregiving and then we want like are still hanging around here. Like for me, it’s been 73 years since my dad passed away. And then, you know, a handful of 27 since my mom.

 

Like, why, why are we still here? Well, I have a theory about that, and I’d love to hear what your theory is. Yeah I tell you mine. So, Allison Srier in the film uh started Zenia TV because she was so tired of coming in and seeing her husband just staring at Fox News in the memory care. Uh, Roseanne started Daughterhood, the podcast, while she was still caring for her mother, uh, cause she needed an outlet, I think kind of like me, and she wanted to help caregivers learn what they, what she had learned.

 

Um, then we had, uh, Veronica down in Dallas, and Veronica started her whole nonprofit that is specifically for caregivers in the. Dallas-Fort Worth area that now she’s, I believe they just celebrated their 2300th year and she’s looking to expand that. But she was taking care of both her grandmother and her mother with Alzheimer’s at the same time. Yeah, even the cast members, Matt was now at Carolel. He was in at caregiving.com. I think once you go through something so traumatic, You don’t want people who are coming into this space behind you to go through the same thing.

 

You don’t want people to have to reinvent the wheel every single time. Like, why did I have to start from square one when there were decades of people before me who knew so Much more about this journey because they had finished it. We weren’t sharing our stories. I think social media has made a huge difference of how we can now share our stories so much more. But I think that goes, you know, like when did when did Ronald McDonald House start? It probably started by some parents who, you know, had to put their children to rest and they wanted to make sure that the next set of parents were better supported than they were, that weren’t scraping and clawing for every piece of resource, you know, um, I, I think that’s true for any.

 

End of life journey, you can probably find someone who stays in that space to say, I don’t want this to be as hard for the next. Right? So I’m gonna be here. I’m gonna try and make a difference. I, I agree with that. I do agree that that that is part of it. And I too started my business while I was still carrying and I had no business starting a business, um, and had thought about quitting it so many different times, like, just like, this is hard.

 

I’m just gonna phone it in and Not do this anymore, but still here, still, you know, still going at it. But I, um, I do think that that’s part of it is the problem like, let’s make, let’s make this mean something like you know you’re doing some you know you’re doing meaningful work by caring for another human being. But let’s leave maybe a, a, a bigger mark, a legacy mark to make somebody’s life, like you said, a little bit better. I also think it was an outlet for, for us during the, during the time that we’re doing it.

 

It’s like, you needed that creative outlet. I didn’t know that I needed some kind of creative outlet, but I needed an emotional outlet where first the blog helped me process the difficult and complicated emotions around caregiving. And then layering on the different things. And I was like, well, I like, now I like spotlighting caregivers and I want to tell their stories because I don’t necessarily have all the answers and the information, but I can maybe put them in the focus so that they can, um, share that.

 

So, but it is, it is around the same theme of making somebody’s life easier. And I think there is, we have we some self-benefits from that too, cause two things can be true at the same time. Um, yeah, so I think it’s, but it’s, it’s not good, it’s not stopping. There’s more, more people kind of coming and building their community and making their mark, and we got plenty of problems to solve here, like. There’s there’s 25 million family caregivers and and growing and that’s just the US alone and so many different conditions and, you know, lack of respite and all of that.

 

I think one of the common themes we certainly all have is the, the money part, like, where’s the money to help, help these people who are doing amazing stuff, you and I and all the other folks that we know, like elevate what they’re doing. Um. You know, sometimes I get frustrated that there’s these like big name organizations that maybe get all the money, but you’re like, what are they actually freaking doing for family caregivers? Like, they’re getting the funds, and some of them are doing stuff, but some of them you’re I’m kind of scratching my head a little bit.

 

And then there’s these like grassroots, gritty people who are Making things um happen with very little, frankly, absolutely. So I’d love for that gap to be closed. Two things about what you just said, um, and you said this about the blog too, the first time I saw the film, uh, even in its first rough draft, um, I realized I had just made the film I wish I had seen in 2016. Uh, and I didn’t, this wasn’t scripted. This was all I did was go to these caregivers and ask the questions that I knew were the topics that were the most important to caregivers, that were the most confusing.

 

So, you know, it’s not uh a teaching moment, but there’s so much you can get out of it that you can learn from, but it’s not like us sitting around going, OK, so now when you know, a UTI. Comes into your life. This is what you do. It’s none of that. It’s telling our stories, and you can glean from that. It’s like when your loved one is wacky and you can’t figure out why, it might be a UTI. Yeah, yeah. When it’s my mom was like, she claimed my dad was cheating on her, you know, one of the UTIs episodes and like, yeah, their personality just completely can alter.

 

It can, it can, so much stuff, like we’ve become, um, yeah, experts in that. I agree. In fact, I just was having a conversation a couple of days ago with another uh care influencer, and we were talking about how I think the whole world got caught with their pants down when it came to dementia. And a lot of aging situations because we’ve all known the baby boomers were going to hit. You know, yeah, now it’s 12,000, I think every day at age 65. Yeah, the people 30 years ago, 20 years ago saying, hey.

 

Uh, while you have all these resources for a cure, and while you’re spending all that money, shouldn’t we have a backup plan in case we don’t have the cure for cancer, or we don’t have the cure for dementia? Where are the resources for the people who are going to be helping the people who are moving on to their next adventure? And that was where we were just left absolutely. In with their pants down, like you said, like it’s, it’s and I get really frustrated with the bigger organization cause I think even now sometimes they are so I think this is what influencers bring to the conversation.

 

We’re the boots on the ground and we’re not beholden to any. Larger organization or group that tells us what we can and can’t talk about or or be about. We’re the ones who are going, wow, poop’s gonna be part of your future. Yeah, caregiving is messy. Um, so I get frustrated that sometimes they aren’t supporting. More people who are, who are really giving out the true information. But I also understand, they’ve they’ve got their lawyers, they’ve got their, you know, I didn’t think about it. Maybe I’m glad.

 

I mean, I know I didn’t become a nonprofit because I didn’t want to do the paperwork and have the board and do all of that and have more autonomy, so. Um, I, I like that reframing, like, oh, look at me, I get to, I get to do it the way I want to do it and talk about the things that I wanna, wanna do without and I think about, yeah, the film because it’s like we didn’t have anybody. Staring us down and saying, uh, you know, you can’t really talk about how you pulled your mom out of memory care.

 

That’s not gonna, the memory care people aren’t gonna like it, you know. Yeah. Well, that’s what happened. I know. I mean, we, we did I hold 3003 assisted living to another, yeah. What I don’t like is the part where, OK, I don’t know how long I can stay in this care space because I don’t, I can’t generate revenue. So that’s, that’s the downside to it, you know, what, what am I not going to be able to impart to new people because they can’t. Afford to because this didn’t turn into a a paying job, as I’ve strategized to try and get it there, and that change, but that’s that’s the downside, like, yeah, yeah, yeah, you deserve to be paid like we gotta make a living.

 

We gotta like make a living, I mean hopefully this experience will elevate you to something, you know, your next dream job that you want. But if you want to stay in this space, which you’re a valuable person in this space, like, let’s, let’s help these people, help you, help me. Like, and I’ve had to kind of remodel my business model over the years. Like, it’s, I don’t think any business model that is, uh, I, I mean, it’s harder, I think. It’s a harder business model if you’re trying to get money directly from families, because they are already paying so much out of pocket.

 

Um, for the respite, for the backup support, for the supplies, for all of it, um, for their therapy appointments, um, so like, you know, asking them for one more thing, I think is a hard business model, and that’s kind of what I tried initially. And then it wasn’t until I reframed it to say, OK, who can pay me? Who, who can pay me to help caregivers? OK, employers can pay me to do speaking, um, different organizations that way. Oh, this person wants to advertise on my podcast or my newsletter because I have accidentally built this, you know, influencer type of space.

 

Like, OK, pay me, pay me for that. Like. So, but I, it’s, it’s tough, and I, you know, I meet new people all the time who are trying to get into this space and part of me is like. run away. But then, you know, but they, it’s, it’s kind of a little bit of a part ministry, part, part business. It is for me and it’s, it’s, I’m so passionate about it because I think I have, I think not just me, but the community that was attracted to my writing and isn’t attracted to this film because they too are feeling the same thing.

 

We can’t live 24/7 in tragedy. That may be great for your fundraising, but please just give us a break. You know, can we start hearing. the more positive stories. And not to Pollyanna this at all. This is the hardest thing you will probably ever do is to help somebody to the end of their life. I’m suspecting it’s going to be hard, that trip is going to be harder than me getting to the, my own end of the life. Yeah. But I wanted my dream now is to take the blog and turn it into a half hour dramedy.

 

That’s what I would love if I could do. The Seinfeld of caregiving or yeah. Even just to like get a a script written for a pilot and see if I could sell that. Or if I can’t sell it, pull together a crew and get maybe the 1st 3 episodes done on a YouTube series. And then see, you know, instead of a half hour, make it a 15 minute. I go back and I read those blog posts and I see the entire episode. They’re so personal and they’re so There’s there’s such, um.

 

Kind of a, a funny that’s Jane Austen too, kind of that absurdity of, of human nature and human disease. And it says a lot about who we are as people sometimes when we go through these. And I think a lot of that and just writing about the absurdities that we had in our within ourselves that we met dementia with, you know. I mean, there’s, there’s, I’ve got several episodes when you run out of your own content, like. I, I’m literally thinking like I got called home from work one time because my dad was on a blood thinner and they both had mobility issues and they’re like, when are you gonna be home, Elizabeth?

 

I’m on my way, blah blah blah. OK, well, your dad scratched this mole on his back and now he’s bleeding. You know, profusely because he’s on a blood thinner. But don’t worry, I stopped it with my poise pad. Um, and I went home and there’s like poise pads stuck to my dad’s, um, back. And then I just spent 6 hours in the urologist with my brother on Friday, and, um, that was a whole adventure that, you know, I got to see parts I hadn’t seen before. Um, and have some trauma from that, and he eventually peed out a bladder stone, like a large bladder stone.

 

So like you can’t make this shit up, like literally. So how do we support you on this dramedy series like the next thing, like what or how do we support you now? How do we support you later? Well, for one, I have, we have a store. Yes, you have some fabulous products. Wine women invent a t-shirt on, which I’m, I’m sending you stuff. So I love it. I love it. The DVD and the Blu-ray are for sale if anybody still has those, um. I’m going to probably release the film.

 

I think I might release it for February 21, National Caregivers’ Day. I think I’m gonna release it for streaming. It won’t be like the Netflix or the big dudes, but it’ll be streaming service that people can access the film and a ticket and watch it at home with their friends, um. Yeah, get a t-shirt, get a cup, get a mug, get any, anything. You can store and purchase. And I’m still, you know, I’m, I’m kind of getting to the end of my rope, but I’m not giving up yet.

 

And I’m still working on partnerships, you know, if you have a company, just like, you know, you, if you have a company that’s looking to make connections with their caregiver employees. And and make you feel, you know, as valued as they should be. I’ve got a film for you to bring in and and let your caregivers know that you understand where they’re coming from. Yeah. So you know I’ve got I’ve got partnerships I’m still trying to make I’s an opportunity like I have a corporate package that I put together.

 

Maybe that’s one of the, the offerings that I add to that. We, we have to talk about that. Like I do an annual corporate package for some of my clients where it has like support and education. But, I’m not the dementia expert, so and sometimes they are definitely looking for that. So let’s, let’s definitely talk about that maybe that’s an issue. I would or something we put together. I would love to see the film kind of like this, because the film is not just caregivers talking, it’s it’s a whole road trip.

 

Yes, and I’d like to just pull some of those caregivers stories and say, look, you’re training. You know, people who are going to be working in ADRCs, people who are who are out there openly trying to support caregivers. I’ve got a set of 10 clips that are going to show you and, and help you train these people to let them know where caregivers are at when they train them, you can market to them. You’ve got a product, you’re trying to market. How are you gonna learn about your people?

 

You watch this film, learn more about what dementia caregivers are really living and and looking like. Um, that would be cool to get to like maybe some government. You know, we did so well. Wisconsin ADRCs started with two screenings booked, I think last February. We’re still booking screenings. ADRC with Wisconsin. I know, has booked this film because they want their caregivers to see it. I’d love to get to the um state director like the AA the area agencies on aging, is that what they’re sometimes called different things for different states, caregiving Expo, you’re this or that, like all of that and say, hey, we’ve got this film.

 

Let’s, let’s make it available to all of the people in your, in your, um, aging services that, that could utilize for the next 2 years. And let’s talk about what that looks like. And we need the funding, and you need this, these, win, win. Love that. Well, we, I mean, normally I flip and talk about self-care, but we’ve talked about self-care community. Self-care, your writing is emotional self-care, um, you know, the, the, all the friends that you’ve made and certainly laughter being a big part of your self-care.

 

I wanna, I do have to ask you a couple of questions from the just for your daily self-care journal. So first question, how do you celebrate your personal success? Like you’ve had success. What do you do to celebrate it? Um, it’s usually with friends. It’s usually it’s my favorite thing to do is to, you know, see my boyfriend’s face light up when I say, because he knows how, how much of a struggle this is his own way, but to say. Dude, we got PBS, you know, or to go to my friends who who are like, did you hear from PBS yet?

 

No, not yet. That means that no, they’re never gonna blah blah. Yeah, and they’re cheering you on. I love that. I’m so glad you have a supportive boyfriend. Same. I’m like, I booked another client or a corporate client, same thing. So you gotta have your people who um will cheer you on for sure. Um, how about, let’s ask it this one. What has surprised you about your life so far? That I’ve even made it this far. Seriously? I’m a little rough and tumble Portland Northwest girl. I’m like, Whoa, how did I live this long?

 

That’s shocking. Um, you got more to do. You got something more to do. Oh yeah. I’ve had a very small, amazing life, and I’m very grateful for that. I love that. I love that. How do we, um, how do people say, get, learn more about you, stay in touch, support you, like, where’s the best places to find you? Yeah, Wine Women and Dementia. com is the film’s website and we’ve got the trailer on there. We list, um, we’re doing, still doing a lot of community screenings, um, although December or right now is always pretty slow, sorry.

 

Yeah, that’s OK. We’re we’re recording in December, but yeah, coming out in February. OK. Uh, so we list community screenings around the states. We’re still, um, looking to see what we can do both overseas, you know, just even just Canada above us, Mexico below us, um. That’s another thing I’d love to get funding for is I’d like to do a lot more translations and start, you know, to Japan, to Malaysia, South Africa, you know, up up to Finland. I, I’d like to to be able to see where else this film can really connect with caregivers around the world, um.

 

Where was I? Oh, so you can follow us on Instagram, Wine Women and Dementia. com to see where it’s screening to get information about the film, uh, resources. I’ve got a great resources page of all the things that especially helped me, but then just everything that I find that is super cool, I will go back on that resource page and be like, wow, I’m out of the game 24/7 now, but boy, this looks awesome for new, new caregivers. Um. And Facebook, and I’m YouTube. YouTube? Yeah. Well, we will link to all of them.

 

Yeah, cause everybody has their places that they like to hang out. And, um, and then I, you know, I know you’re a connector, so like you said, connecting them to other the resources that, again, you wish that you had, creating what, creating the community that that you wish you had. Um, so, so grateful for our conversation today, Kitty, and like cheering you on, like, If I had more money, I’d keep putting it on you. So, um, yeah, like you too. I am so proud of all of the people that I, you know, you’ve become my friends and we’re we’re just we stay here even though there’s sometimes to our own detriment, but we’re here.

 

Yeah, so amazing. Yes. Well, love you to pieces and we’re gonna, you know, of course, keep in touch and I’m just excited that this is going to reach more people that it can potentially help. So hope it helps you listening and then hope that you share it to somebody else that can help them, the podcast, kitties, documentary, all of it. So thank you so much. I’m in Atlanta seeing my crazy friend Nicolette. You and I are gonna get. Let’s go. You can stay here. I’ve got a place for you.

 

I don’t know if Nicolette lets you stay with her, but you’re certainly, yeah, yeah, you can stay here. We we’d love to have you. Um, amazing. Take care of yourself, Kitty. We’ll talk to you later. Bye bye.

 

Hello podcast listener. If you’re caring for a loved one with Alzheimer’s or dementia, you don’t want to miss all’s authors podcast Untangling Alzheimer’s and dementia. I’m your host, Mary Anne Shuo, a registered nurse, author, and dementia daughter. In each episode, I interview one of our 300+ authors about their personal dementia story and why they chose to write about it, sharing intimate details and painfully obtained.

 

Colledge to help you on your own journey we share a variety of stories across all diagnoses and from a range of caregiving experiences. You can find us on your favorite podcast platform in the whole Care Network. Remember you are not alone. One can sing a lonely song, but we chose to form a choir and create harmony. Find us at alls Authors.com. See you soon.

 

Thanks for joining us today on the Happy Healthy Caregiver podcast on the Whole Care Network. As always, show notes that accompany today’s episode can be found on my website, Happyhealthy caregiver.com.

 

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