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Informed Aging
A podcast about health, help, and hard decisions for older adults.
Informed Aging
Episode 87: Wine, Women, & Dementia
View the trailer: https://www.winewomenanddementia.com/trailer
Follow on Instagram: @winewomenanddementia
Follow on FB: @WWDdocumentary
SYNOPSIS
The world is grappling with a crisis as the baby boomer generation ages into dementia.
The United States is no exception, with an estimated nine million Americans projected to be living with dementia by 2030.
In light of this, Wine, Women, & Dementia provides a poignant and intimate look into the human side of dementia. This film follows the journey of former dementia family caregiver and filmmaker, Kitty Norton, as she embarks on a cross-country RV adventure with her best friend, Beth Rigazio, to meet the dementia family caregivers who provided virtual friendship and encouragement through their shared caregiver experiences. Through these face-to-face encounters, Norton seeks to deepen her understanding of the caregiving experience, and highlight the vital support that caregivers provide to one another, despite the physical distance between them.
Robin Rountree: [00:00:00] Welcome to Informed Aging, a podcast about health help, and hard decisions for older adults. I'm Robin Rountree, a former family caregiver. I've worked in the home care industry and now work for the Alzheimer's and Dementia Resource Center. The thoughts and opinions expressed belong to me and my guests, not our wonderful employers and sponsors.
Before making any significant changes in your life or your person's life, please consult your own experts.
. Today we're talking to Kitty Norton, the director of the fabulous documentary, wine Women and Dementia. Now, she started a blog called Stumped Town Dementia, while she was the care partner to her mother who was living with dementia, and she would film short videos to go on the blog. And then when her mother, Gloria passed away in 2021, she took those videos and then combined them with the videos she took on a trip around the United [00:01:00] States in an RV talking to other dementia caregivers. So she put it together in her first feature film to honor the journey with her mother to spread awareness of the caregiver side of the equation, and to let other dementia households know they're not alone.
. They are worthy of being seen and celebrated. It's a wonderful movie. I hope you get to check it out and also check out our conversation with Kitty right after this.
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For our clients. For more information, log on to senior helpers.com/orlando. [00:02:00]
Robin Rountree: We're back. Joining us is Kitty Norton. We're gonna talk about her wonderful documentary, Wine Women and Dementia.
And Alexandra, another staff member of A DRC said, I need to be in on this 'cause I saw this movie and I loved it. So welcome Kitty.
Kitty Norton: Thank you. Thank you for having me.
Robin Rountree: Yeah. So lemme tell you a little bit about, I'm curious about your story ,before caregiving, was [00:03:00] involved, you were working in the media entertainment industry, right?
Kitty Norton: Yeah, yeah. I had, um, always worked around really great stories. I started my career as nonprofit theater, working on the development side.
So I was always around amazing stories and I always did a lot of reading. Um, read really great. Novels also. And then 2008 hit and I thought, you know what? I don't wanna be in fundraising anymore. This is all going the wrong direction.
Robin Rountree: Yeah. Not a lot of funds to be raised. Yeah.
Kitty Norton: So I went back to school like everybody else in the country and I ended up getting really into editing and I thought that's, you know, now it's visual storytelling.
Now I get to support. Somebody's words in, in creating the vision. And, ended up down in LA and I left about a year after mom was diagnosed. Okay. So I knew at some point I would need to come home and help my dad, but [00:04:00] I moved down to LA from Portland, Oregon and was doing really well. I was working on a lot of, , NBC shows, assistant editing for nbc.
Nice. Uh, yeah, television shows and then. I got the call that dad had stage four pancreatic cancer
Robin Rountree: and he'd been the main caregiver to your mom? Yes. Yeah. And mom was diagnosed with, in,
Kitty Norton: , vascular dementia in 2010. So this was 2016 and I was. In, in the film industry, you have huge hiatuses. You know, you, you usually have your whole summers off Nice.
Depending on, , the schedule of the show that you're working on. So I was already, I was like two days away from hopping on a plane and coming home for a month and spending time with mom and dad and my friends and stuff, and it was just like, Nope, I have to go right now. So.
Robin Rountree: Yeah. So dad has got stage four cancer.
Mom has got dementia. Your life changed pretty quickly.
Kitty Norton: [00:05:00] Yes.
Robin Rountree: So unfortunately, your father passes away and you immediately become the caregiver. Yes. And your sister moves into your mom's house.
Kitty Norton: Well, no, Lexi worked on the coast, the Oregon coast. Oh, okay. So mom and dad lived, uh, just a little ways out of Portland, Oregon.
So it's about a two hour drive for her, but she was still in the state. Okay. Um, when I initially came home, we thought we were getting dad ready for chemo. Mm. And then eventually I'd be back in LA but he went from diagnosis to death in three weeks. Oh yeah. It was super fast. So. I had already kind of taken over the basement just to help
with dad. Um, and then it just became very clear to both Lexi and I that mom can no longer live on her own. So I stayed and told the boyfriend we were coming back. I had just gotten hired for the first season of the show, "This Is Us", [00:06:00] as an assistant editor. I know that was gonna be like my biggest show that I was, and the editor was like, really
excited to help me move up into an editor's chair. Yeah. But I did quit that and you know, called the boyfriend, said, Hey, you wanna live in my mom's basement?
How can he, she's nuts.
And you already know I'm crazy, so this is gonna be super fun.
And we
packed up the apartment and, yeah, moved into mom's basement.
Robin Rountree: So you went through that whole experience and started a blog. Man, I respect that you, but I, I also get it because you need to kind of release all of that. You probably didn't have the time for it, but you made the time to process all that you were going through.
Kitty Norton: Well, my sister Lexi and I split up the week.
Oh, okay. So she continued to work through all of mom's, journey. But she would come, I think when we first started, she took three days a week, and I took the other four because mom lived on a split level. Ah. So it [00:07:00] was really easy for Lexi to come and just take over upstairs, and then I could be downstairs for three days.
Nice. You know, and then when Lexi would go home, I'd go live upstairs. And, you know, that was easy to do. So I, I needed something creative. Yeah. And I was finally like, Lexi's here for three days a week. Why don't you do something other than. Just sit there, play games on your computer. Right. So I did. Yeah.
Awesome. Yeah. And
Robin Rountree: so through the blog, which is still up, right? Yes. Yeah. What's it called?
Kitty Norton: , Stumped Town Dementia. Okay. Okay. There's Stump. Stump Town is uh, one of Portland Oregon's nicknames. So I called it Stumped 'cause we were stumped and stumped down. Couldn't figure this out at all.
Robin Rountree: Yeah. Yeah. There's a lot to figure out.
There's so much and there's not a book. And if there was, you wouldn't have time to read it. Right. 'cause you're chasing after mom. Exactly. I get it. So you go through this whole thing [00:08:00] and you've connected with people through your blog. . How did the idea for the movie come about?
Kitty Norton: So I had made really good friends all over the world, um, just a bunch of caregivers, and it was never a huge blog.
I think at the most we had like maybe over 500 readers regularly. So it wasn't like, you know, I have millions of people to choose from. . But there were five people in the US that had become very, very special to me. And as mom was progressing, I, I kind of had this like daydream of when this is over, I'm just gonna get in the car and I'm gonna drive to these people's houses.
I'm gonna show up with a pizza and a bottle of wine, and we're just gonna talk caregiver smack. Love it. I, I, if they say yes, I'm gonna show up and we're gonna do this. And after mom died, for one, I just needed to get outta the house and just like leave it all behind for a little bit. I was already the executor, so I knew I had to come back and take care of all of [00:09:00] that.
But, , I just got to thinking, you know, these conversations might be really helpful for other caregivers because the thing about my blog and this community is all of us were using humor to help us cope. You know, and we weren't disregarding the tragedy. We just weren't basing our entire journey on it.
We were like, we have to laugh at some of these really wacky things that are going on and process that way. So that for me, I wanted to meet these people. To have an even like closer interaction to where we can just really let loose. Yeah.
Robin Rountree: And I do wanna say, because uh, when I went on TikTok for the first time, I put in dementia and immediately it was, , an awful video of somebody making fun of a person living with dementia and how they couldn't.
Answer your question, they got very upset. So you treated your mom with dignity the whole time, but then you've gotta go to the side and kind of laugh at the [00:10:00] disease. You weren't laughing at mom. Is that that? Um,
Kitty Norton: I would say that's close. My family never really put a big price on dignity. Oh, okay. I love that.
I would say that all of the fun that we had, mom had too. Okay. . My sister and I inherited our sense of humor from our parents.
So we knew what worked for her. And I often tell people, you know, if your person had no sense of humor before dementia, they're probably not gonna love it when you hand them a banana phone.
Right. Which, if you've seen the film, you know, and yet my mom every morning that made her giggle and then try and punch me in the stomach. So I knew to get out of the way. Yeah. You know, I knew she was gonna, I was gonna get a smile out of her. So, yeah. So it's. Yeah, I would say we weren't, we weren't making fun of mom.
Mm-hmm. Uh, but we were making fun with mom. Right. Uh, actually, sometimes we were making fun of mom too, but she would laugh too, right? So,
Robin Rountree: right, right. Since
Kitty Norton: you [00:11:00] know your person. Yes,
Robin Rountree: yes, yes, yes. Well said. So there is, I think the humor is huge, you know, and not everybody has the dark humor that you and I ended up having on that journey, but some people do.
And boy does it help to laugh with other people.
Kitty Norton: I agree. And you know, one thing I say after like Q and As and stuff, talking to audiences is like, this isn't everybody's journey. You know, I'm not here to judge how you guys are getting through dementia. What if you're, what you're doing is working for you, just keep doing it.
But if you see this and you're thinking, Hey, maybe I can think a little lighter on some of these really difficult days, or the not difficult days, if I can be a little lighter there. Then maybe they can make the really tough days a little easier and, and incorporate what you find helpful in the film. And if you find nothing helpful in the film, well then take a day where you'd really get after your Alzheimer's dementia [00:12:00] person and send me a terrible email.
I'll take it. Tell me how much you hated it. Yeah. And then you're fine for the day. 'cause you really got somebody and you didn't have to take it out on dementia. I
Robin Rountree: love that. I love that. So Alexandra, you currently are caring for your mother who's living with dementia.
Alexandra Garnier-Mercier: Yes.
Robin Rountree: What was it like to watch this movie?
Alexandra Garnier-Mercier: Oh my God, I, I, I laugh a lot. And also I related to what you were doing, what the people were saying, what they were going through, what your sister mentioned as well. Like she forgot my birthday. My mom never forgot my birthday, but she did last year and uh, and a lot of them find it very hard to get support, to get family support or to get respite care. So it was. Everything that we are going through, what you spoke to all the caregivers about, even if it's a little [00:13:00] portion, they have similarities with other, uh, caregivers, care partners in the, the community in the world.
So I found it really helpful. I like the wine outside with one. I said, oh my God, I would love to. Yeah. And having fun and talking about funny, you know, aspect of my life with my mom.
Robin Rountree: Yes.
Alexandra Garnier-Mercier: Yeah, we, because she can see somebody, the doctor, and we go to the park and walk, and if she saw a man with a mustache and she say, oh, this is the doctor is following me.
I said, no, mom, your doctor has white hair and she said. Alex, are you stupid? He dyed his hair. He can dye his hair, so I laugh my head off. Yes. And she says things like
Robin Rountree: that too. And we've had moments laughing about her. She sure everyone is poisoning her. So I'm like, obviously you need the antidote in the house and.
Alexandra Garnier-Mercier: Just
Robin Rountree: [00:14:00] play
Alexandra Garnier-Mercier: along. Yeah. She think the lady is married. The, the lady who's helping her is making poison behind a counter. Yeah. And I said, mom, you would've died by now. And she said, Alex, she's putting a little drop at a time, so it'll last longer. I'm losing my mind. So I laugh, you know? Yes. I laugh. It's it. It was really refreshing.
Yes. You know, watching your video. I'm so
Robin Rountree: glad. Yeah. You drove around the world in an rv, well around the United States. Mm-hmm. And you interviewed these, these caregivers. Mm-hmm. Uh, some of them, their person had passed and some of them, their person was still alive, is correct? Correct. Yeah. And you kind of had a nice range of different kinds of dementia.
Kitty Norton: Yeah. We did different ages. I think Grace, you know, was mid thirties up to allie's. Our, our oldest and she was mid sixties. Um, we only had one husband, wife. I would've liked a little bit more diversity there, but [00:15:00] the reason why. These people were in the film is that's because they became my friends and I had a couple of backups thinking, well if they, you know, if they say no.
Right? But everybody was like, sure. Wow. Come when are you gonna be here? Oh my gosh. Well it be September. Is that okay? Yeah. But one of the things that I really like that you said, Alexandra, is. Like that. Saying that every dementia person is different. If you've met one dementia person, you've met one dementia person.
Mm-hmm. I think that's a little misleading because they think the journey has similarities regardless of the type or the age or the relationship. All caregivers are gonna feel guilty at some point. Yep,
Alexandra Garnier-Mercier: yep.
Kitty Norton: Most dementia people are going to, not a lot of dementia, people are gonna go through the rage stage.
Incontinence is, is a big question. We have just a very brief, , conversation about morphine at the end of life. Mm-hmm. And I had to fight the editorial team for that 'cause [00:16:00] they weren't caregivers. I'm like, you don't understand how many of us at the end of life, are like, I'm gonna end up being the person who kills.
My person that I've tried to keep alive for so long and so many caregivers come up to me and they understand that like we all, we have very universal experiences and that's one thing I wanted caregivers to know is like your person who's currently, you know, planting a pear seed in somebody else's yard with a plastic bottle.
It's normal. Yeah. Guess what? Somebody else in the world has done the same thing. Yeah. Does your mom carry poop around her own poop and put it in a different place in the house? Normal. Not.
Robin Rountree: Not the first. Not the last do it. So yeah. So I think this is a great film for if you are starting to be a caregiver.
Uh, if you're like me, I've been a caregiver and I'm, I [00:17:00] just was shaking my head. Yep, yep, yep. Oh, they said that out loud. Yes. Yes. I just am curious how people who haven't been in the caregiver space are reacting to it.
Kitty Norton: , well, I have a survey that people fill out, , I think sometimes, usually when people hate stuff, that's when you really hear from them.
Mm-hmm. And I've only had two emails that have ever been really upset about the film. Good. And one was just like last month where all they said was hatefully disgusting. Mm-hmm. I was like, I think they're talking about the
Alexandra Garnier-Mercier: film or not. You didn't mention which part they didn't like,
Kitty Norton: and it came to that address, that email address.
So I'm like, I think they're talking about the film. I don't think I had 'em over for dinner, so I, I'm pretty sure. So I think, and, and in the survey you can respond, you know, I've seen the film. I'm a caregiver, not a caregiver. Just dementia curious. Mm-hmm. So we've, we know that there's people [00:18:00] who come that are just dementia curious, right?
And they also feel like they got a lot out of it. Like they understand the journey a lot more. They know how to better support a caregiver. So there's, there's been a lot of good feedback and one of the things that I'm really proud of is I don't often have somebody stand up in a, in an audience and admit that they're living with dementia, but the ones who have, have been so grateful for the film because they think
Robin Rountree: goose bumps.
Kitty Norton: Yeah. I think it shows them that you know, your person who's taking care of you, they're gonna be okay. Yeah. And you're gonna be okay. You know, we're, we're all just doing our best here. Exactly. So,
Alexandra Garnier-Mercier: and we can learn how to interact with them. Yeah. And what to say, not to, um, not foster agitation or, you know, to limit Yeah.
Agitation or their reaction to the environment, et cetera.
Kitty Norton: I think so too. And I think it just shows. [00:19:00] You know, because this film isn't full of like tips and here's how you work act in this, right? Yeah. It's full of just normal people saying, Hey, there's life on the end of life journey, and I can't imagine, as a caregiver, this drove me nuts as every time I'd watch a film or see a movie or, or read a book. It was all so tragic. You know, it's like everybody has to cry. We all know if it's a dementia story, everyone dies in the end. Okay. Yeah. No spoiler alert there know. But to see, to see the humanity in this documentary, it's like we're just doing our best and we're having some laughs and we're having some terrible days and.
That's how we're getting through it.
Alexandra Garnier-Mercier: And that reminds me of my mom running off when I was kneeling, you know, next to her to put a pull up. And she said, you put it already. And I'm looking at her, I'm laughing. I said, no, I didn't. She said, and I said, the. [00:20:00] Touch down there to see that you don't have any pull-ups.
And then she, she has her dress like this, and then she tried to leave. I said, if you go in the hallway, they have camera, you'll be doing strip tease there. And then she came back right out the running like this and she said. Put it on. It's like, she's has been asking me to do this for the longest time and I'm wasting her time.
So I've been laughing and it's true. Just laugh about, right. Yeah. You know, the situation. Yeah.
Kitty Norton: I think so too. And then if you can't do it with, with them, you know, you. Community is the biggest message of this film. Find those people you can laugh with.
Exactly. You know? Yeah. Yeah.
Robin Rountree: I know on my journey, I shared a lot of my mom's stories on Facebook and I, I didn't realize till she passed how appreciative people were. You know, there would be funny mom stories, you know, along with the, uh, we're in the hospital again. I need your prayers. Yeah. So, [00:21:00] um, that really kind of opened up people, 'cause it's, the stigma is still there, you know?
Right. You think, oh, dementia, you're off to the home and we'll never hear from you again. So it's just like, no, that's, that's not the journey. And I love that you shared the other real life stuff. Um. The rescue dog that you helped out.
Alexandra Garnier-Mercier: I love that.
Robin Rountree: Who doesn't love a rescue dog story?
Alexandra Garnier-Mercier: Oh my gosh. How long did it take you to drive this car?
Well, that's this rv. I don't know how you learned this.
Kitty Norton: I was on the road for 29 days.
Robin Rountree: Okay.
Kitty Norton: And. Bethy was with me, my traveling companion.
I dropped her in LA so I think she was 26 days, so, wow. Yeah. That's
Robin Rountree: a lot of time to be close together.
Kitty Norton: I was having a great time. Yeah. Beth has since told me she's got terrible PTSD through this. And I tell you, picking up that dog, she about killed me over that. Oh no. She's like, we're off so we can't, we're gonna, we're gonna miss our [00:22:00] schedule.
I'm like, I don't care. I'm not leaving that dog die on the side of the road.
Robin Rountree: Oh my God.
Kitty Norton: Yeah.
Robin Rountree: Well, we rescued him and he found his forever home.
Kitty Norton: . He was such a cool, yeah. Cool dude.
Robin Rountree: And then, um. I thought it was so interesting. It was just kinda like a side note in the movie, but you and your sister had been estranged and then you came back together and then this caregiving thing happened.
Yeah. I'm like, whew. Somebody was looking out for you, getting you two back together.
Kitty Norton: Yeah, it was a, it was a lot. It was really difficult and I hear people talk about their siblings and stuff and, and I understand like there's some people who's like, you know. My brother's a heroin addict. Okay.
That's a whole different thing. Right? Right. But just different when you guys are angry with each other, you just have to put your person first. Right. You know? And I never, my sister and I were still not real great when this started, but neither one of us ever doubted the devotion that the other one had to our mom.[00:23:00]
And even though I made all the decisions, I was that person. I never made a decision without talking to Lexi to the point where she was probably like, I don't really care. Just decide. Right? I could care less about this issue. Right? How much more time we gonna spend on this?
Alexandra Garnier-Mercier: But that's great that you try to involve her in the decision making.
Yeah. Right. At least she gave you the green light. You can. You can do this, you know,
Kitty Norton: and I needed someone to blame if it all went wrong.
Robin Rountree: Love that.
Love that.
Kitty Norton: This is your fault.
Robin Rountree: No. So you won some awards for this movie, this documentary we did. Congrats. Yeah. Yeah. Thank
Kitty Norton: you. We won a best audience. Audience best documentary for Dubuque.
And then, um, at, where is it? Just at Naples? No, no, no. Um, just one of the coastal towns anyway, we won both, uh jury pick and the [00:24:00] audience choice. Wow. Best documentary. So I was really happy about that. And
it's on
Vero
Beach.
Robin Rountree: Vero Beach. Vero Beach. That was, who knew. Such a fun
Kitty Norton: festival. If you ever get a chance to go, they were really fun.
Robin Rountree: Great, great. So you've done this PBS, now you can find it on PBS. Yeah. Yeah. That's a big deal.
Kitty Norton: Yes. We cut, we cut the film down to 56 minutes. So there's a full theatrical film at 87 minutes. That's the one you, you guys saw with the whole shebang, right? Um, and then we kind of cleaned it up a little for PBS.
Mm-hmm.
Robin Rountree: You got some spice in there, but I think if you're a caregiver, you're like, all that happens.
Kitty Norton: Exactly. Yeah. But, uh, so PBS is at 56 minutes and then we do like a 27 minute version,
yeah.
Robin Rountree: I'm gonna say that, um, all that you have done, uh, really eclipses being the assistant editor on, um, a great TV show.[00:25:00]
Exactly. Do, do you feel like you've really done something?
Kitty Norton: I do. I just wish I was getting the same paycheck. Right.
Robin Rountree: There's that. There's that.
Alexandra Garnier-Mercier: Do you think you will continue doing documentary or you can go to.
Kitty Norton: Whatever else. I'm gonna stay in the care space as much as possible.
I'm not going back to editing that was so technical and, and hard to learn the first time around. Yeah. I just don't have the energy anymore. But I wanna stay in the care space.
I wanna continue to put the film out there. Um, we're, going to a lot of the statewide A DRC groups, which is one of the reasons why I'm here.
. It's 'cause people are just finding, they're finding that this is a way to bring caregivers in that they haven't been able to reach before.
So we're trying to do this in all 50 states. Wow. Giving it a shot. Yeah. So it's, there's still a lot. But one thing I would love to see in the future, um. Is I go [00:26:00] back and read those blog posts and I feel like it's a show, you know, based on, yeah, and I think I would love to do like a half hour dramedy and three seasons tops, beginning dementia, middle dementia, and the end of dementia, and just have it be a narrative, you know, based on these stories about like the time we found reading glasses in mom's pull-ups. Yeah. Couldn't figure out why she wouldn't sit 'em
We never did
find out whose reading glasses they were. We're like,
Robin Rountree: what is happening here? Nobody really wanted them, did they? No, not anymore.
Kitty Norton: But my favorite part of that memory is just looking at these reading glasses in between her butt cheeks after trying to help her go to the bathroom and thinking did she poop those out?
How did those get through her system? So that tells you how not bright I am. I was just trying to, the wheels were going very slowly in my head. Like, what?
Robin Rountree: Well, [00:27:00] I have to say, uh, and this is a huge compliment, uh, when my mother passed, her best friend said to me, what are you gonna do with what you've been through?
Um. That's why I'm working here. But look what you did after what you went through. It's, it's incredible and everybody should see your film. And if somebody is listening who's sitting on a few billion dollars and wants to write a check to get your TV show produced, um, they can find you on TikTok at Wine Women and Dementia Doc.
Instagram is Wine Women and Dementia Doc and your website is.
Kitty Norton: Wine women and dementia.com. All spelled out. Love that. Yeah. Yeah. I would, I love to hear from people. Um, you can go to pbs.org and stream the PBS version of the film. Anytime, uh, community screenings bring your community together. You know, we have the film, really reasonable film licensing fees, and it's just, it's an amazing experience.
To do on your own. It's also amazing to do in a group. So,
Robin Rountree: oh Kitty, thank you so much for doing this film. Thank you guys for coming to [00:28:00] be here today.
Kitty Norton: I think you and I are gonna spend the next whole afternoon Alexander just talking about swapping mom stories. Mom, sorry.
Alexandra Garnier-Mercier: You'll hear Well I just doing this is way, I have gray hair now.
I didn't have before.
Robin Rountree: Oh, thank you so much. Please make sure to subscribe to our podcast Informed Aging, tell Your Family and Friends about us. If you'd like to support the work we do at the Alzheimer's and Dementia Resource Center, please go to adrc cares.org/donate facebook.com/informed Aging. Today's episode was recorded at ARC's Podcast Studio.
That's it for now. We're looking forward to our next visit.