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And I just started out thinking, Who would I love to go see? Who do I want to say thank you to the most So finally, when I started to think about it in terms of a film, I'm like, Okay, we need to keep this to the US. After the fact, I started looking at the cast members, and I'm like, All right, we've got frontotemporal, we've got Alzheimer's, we've got vascular and we've got Lewy body. So that's a pretty good I was happy that we had that kind of diversity. Most of us were kids all over the country, Seattle, Chicago, New Hampshire, Atlanta, Dallas, trap PA, which I got lost in for two hours on foot with my poor dog, who all he wanted to do was go home and sleep. Oh, my God. Did you feel like your mother? Oh, I, I did.
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Hello and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232, or email me at dementia discussions.net Today on the show, I am so thrilled to welcome kitty Norton. Kitty left her job as an assistant editor at NBC when she found out her mom had dementia, then moved to Portland, Oregon to take care of her, and we're going to talk more about that.
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But she went on to author a blog called Stumptown dementia, and then from that experience, went on to create an amazing documentary So Kitty, I am so excited to talk to you. Welcome to the show. I'm really grateful to be here, and I'm really grateful to reach out to you listeners. So thank you. Well, thank you. Let's get into it. I want to hear a little bit about what happened when your mom was diagnosed, like, what kind of person was she and and how did you learn about her diagnosis?
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Tell us about that journey. My mom was somewhat of a wallflower out in public. She didn't really care a whole lot to be noticed.
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My father and her had a very traditional marriage. Dad ran this and mom ran that, and she was very comfortable with that.
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She was also a very pretty woman, and I remember even as a child, being a little concerned when my mom would suddenly feel there would just be a change in the room, a different tension, because she would be getting the tension that she didn't want and she was not warranted. I think that was my first introduction to what women go through when it's like me too, me too. I didn't want them to talk to me either. But she was also very funny and very open and very sly with her sense of humor, but that was mostly reserved for friends and family. A couple of years before the diagnosis, most of us were starting to recognize that something was a little off.
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Things were just a little strange. I remember the family reunion before the diagnosis, I had like, three different relatives come up to me and be like, Is your mom? Okay?
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Something seems a little different with her. And I'm like, you can talk to her about it.
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I believe she notices it too.
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Did she that would be unusual. Was she noticing it?
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Well, nobody did talk to her about it, except for me. And I didn't know much about Alzheimer's. I didn't even understand the whole dementia umbrella. I knew very little, but I what I did know was that there was medication to slow it down, and that was about it. I talked to her for a while. It was probably took me about six months before I finally said, Come on, let's just go. Let's just go get a test. If that's in our future, then let's start slowing it down now. So she didn't want to tell anybody. She didn't tell my dad. I took her to the doctor's appointment, and that's when she got the diagnosis of mild cognitive impairment, which is most what most people get when they get started. That was in 2010 by 2012 I was doing very, very well in the post production world up here in Portland, Oregon, and was offered a job down in LA. So that's when I moved down to LA, and I always knew I would have to come back and help my dad with mom. That was always the plan. But I thought I could get down there, maybe get into an editor's chair in few years, and then come back up and work remotely. Well, in June of 2016 I was hired for the first season of This Is Us as an assistant editor. I was so excited. That is exciting. Why it was very exciting. I couldn't believe it, and there was already so much buzz about that, and I knew it was going to be a good run for me. And in July, my father was diagnosed with pancreatic cancer, and three weeks later, he died. Oh, my, yeah. It was, it was super.
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Fast. So my sister and I, who had continually kept touch with my parents just checking in. I even it's only a two hour flight from LA to Portland, I'd be home three or four or five times a year and spend a week with them.
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We still didn't realize how far progressed mom was, and of course, my dad's death, anything major in a person's life, living with dementia runs that progression right through the roof, so we knew she couldn't live by ourselves. So I quit my job, and I moved my boyfriend and I back into Portland, into my mom's basement, and my sister and I split up the week, and that's how it went for the next five years, until mom died in March of 2021 Oh, my goodness. Do you think your dad was caring like he knew that she was getting worse and just taking care of her while you guys were doing your life you're in LA and your sister or whatever? Do you think things are new that it was happening? He wasn't really telling you how far progressed she was. No that wasn't the situation in our family. I know that's very common my dad. I think, like all of us, my dad didn't really understand how bad things were gonna get. So he had swore that he would keep mom at home and take care of her until the day died. The day she died, I knew things were getting harder the Christmas before he died. At one point, dad and I were waiting for mom to come join us in the car, and he broke down and cried because he didn't know what he was going to do. He had started to look at memory cares because he didn't know how much longer he could do this I was in between gigs. That's one thing about working in post production, is you have like, a nine month season, and then you've got three months off unless you pick up other work.
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So I often had time in between, and I was like, Dad, I don't need to take the next gig. I'll just move home right now. Let's just do this. And my father was so funny. He immediately stopped crying and said, Don't you dare I do your taxes, and this is the first time in your life you've ever made any money. No, I didn't, I think back on that with a lot of regret, because while my mom's dementia didn't kill my dad, it certainly exhausted him to the point where he couldn't get a diagnosis sooner, because he couldn't, he didn't have the energy to to work on that, and it wasn't pancreatic cancer wasn't ever not going to be there, but maybe he could have had a couple of years. Maybe he could have been with us for a little while longer. So that's really hard to think about. I have, I have no regrets about mom's journey to death. My sister and I have talked about this. We have a million of them about our dad because we feel like we weren't there.
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Sure. I'm sorry about that. You know what? They're having a great adventure wherever they are right now. So exactly, probably have a lot more fun than I am.
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So your mom gets diagnosed, your dad dies, and you pick up and move to Portland, which is so courageous. Not a lot of people do that for my
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sister and I, there wasn't even a question of it. We knew eventually this was gonna happen. I would also say another odd thing about our journey, I think my dad dying was the last gift he gave to me, because while I was doing very well career wise in LA, I'm a Pacific Northwest girl, through and through, and I would probably still be there because of the money, instead of being back where I belong and figuring it out for less
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money. So your sister lives in Portland. Is that right? No, she
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lived on the Oregon coast. She just recently moved but so she lived in New Turks, Oregon. She ran a destination restaurant there, so especially during the winter, she could take three days off, because there's not that much tourism, and be here and live in the house with us. Those were her mom days. My boyfriend and I lived in the basement, and mom dad had a split level, so it made it very easy for somebody else to come in and be on mom watch and for me to have three days off, which I'm sure you needed. Oh my goodness, yes, yes.
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So talk about how your mom progressed in her disease. It sounds like even friends were noticing at the beginning that her personality had changed. So talk about that a little bit. What did you notice? Mostly, it was,
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it was just the kind of weird forgetfulness. I remember one time we I was home and we had gone to the store and got stuff for dinner and brought it all back. And by that time, we knew mom couldn't really cook anymore, so dad was doing the cooking. And by the end of the dinner we were we were like, Okay, let's have ice cream. And we couldn't find the ice cream anywhere, and mom had stuck it in downstairs, in this little beer. Cooler fridge that hadn't worked in years, like Mom, what were you thinking? It was just really different things like that. We were able to catch it fairly early. Mom lived with vascular dementia for 11 years.
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We got it fairly early on. So a lot of what I remember happened after the diagnosis those first few times when she doesn't remember my name, or she turned to me once and asked if I'd ever been to her house, things like that. And those things really hurt, but I moved past them. I couldn't live in that gut punch arena the entire journey. As far as her personality changing, I think we had two major changes.
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One, of course, was the rage stage, which I was really hoping we were going to avoid hearing from other people on the forums and like, oh my goodness, that is nuts. But in 2019 it would, yeah, it was, like the entire year was just she was furious about everything, and we got really good at ducking dishes.
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Oh my gosh. She was throwing dishes. Throw anything at you. Oh my goodness,
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yeah, it was, it was mayhem. It was at her mayhem. She ripped the molding off the bathroom door. She ripped the thermostat off the wall one day in the middle of winter, on a Friday night, where you can't get any heating people in until Monday
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was mine. It was crazy.
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But then there was another really big personality shift in that journey, like I was mentioning before, my mom had been somewhat timid. That all fell away. My mother became the bell of the ball, and she lost her vocabulary pretty early on. She didn't have much of it left by the time dad died, but she just became so open to the point where you had to watch her, because in a grocery store she saw some tall, handsome man.
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She'd be right next to him, touching him on his arm. Oh, my goodness, I'm just looking up at him with just like, oh, there's just these adoring eyes that's like, oh, good lord, dementia Vixen, get on back here. So totally disinhibited. Oh, man, it was crazy, and part of it, sometimes it would cause us problems, because she was also really loving to babies, and not every mother wants some crazy old woman patting her kid on the head. But it was also kind of like, I felt like it was Gloria Norton coming out of her shell.
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Dementia is not giving us much, but you go, you go, girl, you do this because you're clearly having the time of your life.
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Yeah, absolutely.
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Have you seen there are these cards that are out there that say, like, my loved one has memory loss. It's like a card you could show people waitresses in the restaurant or something, when, when your mom can't order the stewardess on the plane or whatever, the mom with the stroller, with the baby thing, because it's hard in those situations to say, like, Oh, hey, I'm so sorry. I disagree.
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Do you come right out and say, hey, my mom has memory problems or do
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but keep in mind, I didn't have I understand why people do that, especially when they have people who are in denial. My mom was never into denial, and for me, I didn't enjoy the stigma that I think that perpetuates. I don't see people handing out cancer cards.
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See people handing out menopause cards. Excuse me, my friend's about to rip your tongue off if you don't shut up, because she's he's having a hot flush and hasn't slept for the last three years.
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I think the tricky part, yeah, I guess, like menopause. But the tricky part with dementia is people look fine. Generally, people look fine with cancer. Well, sometimes their hair is sometimes they have a scarf on or something like that.
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Sometimes they look sickly or whatever, but with dementia, generally, your mom was probably still this beautiful woman, just an older, beautiful woman,
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who I think is mom. The only way I would have used them, and I understand why people do, but the only way I would have used them was if mom would have been really defensive about her diagnosis, and she wasn't. So for me, it was like, Yeah, person in Nordstroms who just sprayed some perfume on mom and she tried to lick her wrist.
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She's got dementia, which is what she does, just what dementia people do sometimes. And if we could all laugh about it, then they just had a better experience dealing with a dementia person, and maybe they won't be afraid the next time.
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Absolutely. So if you could come out there and say that, yeah, raises visibility, raises awareness for everyone, yeah, and especially if your mom wasn't getting agitated, like, No, I don't, what do you mean sort of thing, who are you talking about?
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Where, you know, a lot of families have to dodge
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Absolutely, absolutely. And I. Think those cards come in really handy then.
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But for us, we didn't have that issue, and I wasn't hiding it.
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Good. Good for you. You were out there and your mom was okay with it. I
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was outing my mother all over the place. That was a good thing, right?
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Because people gave her grace. They gave her liberty to act however,
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most people would just smile and laugh. It took me a while to get over the embarrassment, so once I did, and once I saw Mom wasn't embarrassed, I'm like, Who am I trying to fool here? Who are we trying to kid you'd say to the gentleman as you're leading your mom away from him in the grocery store, I'm sorry she has dementia, and apparently she thinks you're really handsome, so he's just had a better day when mom's still like, making googly eyes at him, and that's how I had to be more open for myself and for mom. And
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when you talk about the rage stage, was it? So oftentimes there's rage, this agitation and aggression, which is really unlike your mother when you try to do something with her, like when you tried to change her from her pajamas, or to have her get into the shower, bathe her, dress her, like all of those things that you try to do that's usually when people get aggressive. So is that the case with your mom? Yes, absolutely. Yeah. She
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She followed it to to to the T again. She didn't have much of a vocabulary, so we didn't get a lot of cursing out of her. Every once while we'd get the son of a that she lost last part of that word, yeah, that would kind of make me laugh and get me out of anger. It's very hard not to meet anger with anger. Um, my sister was a lot better at it than I was. She gave me a lot of advice. Plus, I could just watch her. I could just be like, okay, Mom just lost her mind with Lexi, and Lexi's not losing her mind back.
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What's she doing differently? Of course, online forums. Tipa snow, if you are not familiar with her, please look up positive, aging, positive approaches of approach
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to care. Yes, Teepa, no, great information.
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She's an amazing educator worldwide, world renowned. Yeah, absolutely. She
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was the first person I came across in this journey that I was like, she gets what we're going through, and she gets it with humor, and she's not treating it like a continuous tragedy. She's treating it like you all need to get through this your dementia person and yourself. So let's, let's do a little better than we have, and the tips and tricks were amazing, and I took a lot of that and just kept going in, in my own way, but yeah, the brain stage was really, really rough.
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Did you get medication for that?
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Yeah, and that was, Oh, that was another thing I was trying to mention to people, is on her medical team, the person who became the most important to us was the geriatric
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psych doctor, the psychiatrist, the geriatric psychiatrist,
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I had this vision when we were first referred to one that it was gonna be like, you're not gonna get mom to lay down on a sofa and talk what?
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What is his father? What
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are you going to do? Yeah,
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but this person, Dr Susan, just helped us so often when issues would come up and I I'd be like, Okay, we were built waiting for it to pass. We don't want to go over medicate mom in any means. But now we're three months into this, and she's miserable. We're miserable. Nobody's sleeping.
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What can we do? And and every time a situation like that happened, she would even tell us, still, I want you to give us some more time. Let's see if this kind of moves past let's see if the dementia progresses past it. And then she would just be helpful. She'd like here we're going to try this. This is what I recommend. Here's a couple of options. Once you look them both up, especially when you have to get into antipsychotics, that's really hard. Absolutely. It was hard for me to make that decision, but it was finally like we had a doctor who just held our hands through the whole thing.
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And that's really what you need. Yes, you need to be educated. The doctor does not want to snow your mom certainly.
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Sometimes I see you see things on the forum that maybe they did our doctor didn't. Thank goodness,
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yeah. Usually the motto is start low and go slow, so usually they start with a small dose and go up from there. So she was more manageable. And you have to imagine that she probably wasn't comfortable in her own body.
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She's not comfortable being so agitated, very cool. She
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was a small woman, and to just watch my mom just shake with rage. That was the one of the times where I was flying like we need to call somebody. We need extra help.
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The tip of snow. Videos aren't helping at this point, what we know to do isn't helping. The suggestions on the forums and the Alzheimer's connected site, nothing's helping. Call Dr Susan. It's time. It's. Time to get some outside medication help and see that, or she goes into a memory care. And that's while that is an amazing option for so many people, that wasn't what we wanted to do in our family.
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Yeah, good for you. So
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you reached out to Dr Susan and she helped. Oh yes, she
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did. By the time this was over, I was ready to marry Dr Susan,
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Oh, gosh. So you've mentioned the forums a couple of times, so tell it.
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Which forms were you listening to or reading? What were you tuning into at that time,
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Al's connected was really crucial for me. In fact, I met one of the cast members I met through Al's connected, so the Alzheimer's, that's stations forum, in case people don't know, was a big one. Reddit had a lot. Reddit has I belong to, slash dementia slash Alzheimer's, slash caregivers, slash Dementia Caregivers. So Reddit had a lot of good groups.
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I think there was a couple of Facebook groups that I belong to. I have on the website for the film. I have a whole list of the resources that I found the most helpful, and ones that have been also recommended to me that maybe I didn't utilize so much, but other people have, yeah, that community amazing. Yeah, you can I. I don't know how anybody gets to do this without community. I suspect nobody does. I suspect they finally throw their person in a facility and walk away. If you don't build your community, or like my dad, you die. So not to be super dire, but if you don't have a community, get one,
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absolutely. And that's what we talk about here on the podcast and also in support groups, yeah, you need help. This is not a one person job.
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Then you need a sounding board. You need somebody at the end of a week or a month just to be like, Ah, it's been terrible. Can we just zoom each of us pour a glass of wine and talk about the crazy stuff we've been through this last week? And for me, that helped me revisit maybe some of the really big mistakes I made, and to think about them differently, because I'm listening to somebody else talk about the big mistakes they made and be like, Oh, wait, I did that a little differently. And this worked for us. Try it.
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Maybe it'll work for you guys too, you know, and just have that back and forth, you know, first you can commiserate, and then you can laugh, and then you get some tips and tricks and go on and see if it works for your household. So
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you talked about feeling bad about not being there for your dad. Are there other big mistakes that come to mind for my dad, for your mom?
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Oh, yeah,
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oh my god, yes.
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Who gets through this without big mistakes? Yeah? So tell us one of them, one or two, yeah, some of them are hard, because while I've been able to forgive myself, there's still days that I really look back and I'm ashamed. I'm ashamed, and I know wherever mom's at, she now can forgive me, but yeah, really hard. I was always a very big planner, because mom was very mobile. One thing she loved was rising cars. She loved to be out and about, but not always. I had a very hard time letting go of a plan, if it was clear that mom was not necessarily on board for it that day,
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going through with the plan no matter what.
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Oh,
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Mom, you're gonna love it. If I can just get her here, if I just give her the milkshake, if I can just get her a hot dog after we get to the conference, after we do and there was stations, she just wasn't having it. And I remember I took her, I think it was to a quilt show, because my mom had been a big quilter, and she didn't want to go in. When we got in, she immediately walked away from me in the opposite direction. She had no idea where she was going, and she just didn't want to be with me. I was embarrassed. I tried to cajole her, get her back, get her the hot dog. She loved hot dogs, and none of it was working. And finally, I was just furious with her. We went all this way and right, I've done this for you. I planned this for you. And you do you want me to be pissed off all day and just losing my mind with her, you know? And that everyone does, I know, but it's sure feels horrible when it happens.
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And given my mother, and actually, she'd been like this my whole life with my dad, whenever she was upset, she actually told me this once she found that when my dad was doing things that she didn't enjoy and she didn't want to do them, she would just get really quiet. And I was like, Really, mom, she's like, yes, it's been very effective. Well, she used to do that to me and dementia. She
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remembered that technique.
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She just walked away. She wouldn't talk to me.
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She wouldn't do well, of course, she couldn't really talk anyway, but, but I did notice that there were times when I would get mad back at her, and suddenly she'd be in a better mood. I think she'd achieved her goals.
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That's. Me off just as much as I pissed her off. That ever changed. I saw her do that with my dad my whole life, too. It's like, all right, finally, no, you're mad too. I'm in a better mood. Yeah,
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you're right though. I mean, here you have to give up on plans. Certainly, I've seen it with work and in my support groups, people have had to give up on taking the cruise that they planned for the last year, trips and so many different things, so many plans that people make
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well their defense, they have a they have much bigger reasons to be angry.
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I would be like at a quilt show that we got in for free, and we're going home in an hour anyway. Am I just losing it over this
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thing or small?
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It doesn't matter. It's something you want to do for you, for us, something that I know you would enjoy, because you were a quilter and Ray
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and he just thought it was going to be a home run of a day, and it turned into three strikes all around.
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Oh,
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I'm sure there were lots of those. And you're right, your mom forgives you.
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Being in the in the film industry, in the television industry, I've always been a big Oscars person, like I don't do many award shows, but I love to see all the Oscar films.
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And for the first two or three years, mom would go to all the Oscar films with me. As it time went by, like, I think the second year, she decided that the dude next to her, she wanted to eat out of his popcorn too.
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So
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we got that switch scenes.
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He was very kind.
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It got so she'd talk back to the screen. Every once a while, there was one film that we went to that someone, the character on the screen, says, Would you pour me a glass of wine? And she went, me too. But, you know, it got so that got harder and harder. But what I found, and this is a rotten little caregiver thing, especially a rotten little daughter caregiver thing, is, you know, those reclining chairs that they now have all couldn't get out of them
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perfect. She would stay till the end.
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So she started to get futsy. I'd just give her more junior myths. Get into the 20 minutes. I'd get to 20 more minutes of the movie. Then she started getting buts in hand, or something else in munch on watch the movie film, or a Klein in the chair. It's a caregiver hack. That's probably not the best, but you know, well, you had to get to the end of the movie. So it sounds like you guys had some good times together, along with a lot of struggles. Yeah, it was an amazing journey in both directions. It was the hardest thing I'll ever have to do. I don't think I can ever do it again to have since had family members. I have a friend that I worry about. I don't think I can ever take this on again. I worry about myself. I don't know who's gonna have to take this on for me if it happens to me, but I wouldn't have missed it for the world. And I think a lot of how I walked into this journey and how I left it, and how I still feel about it, is very much affected about how fast my dad died, and I hate this term. When people call it the long goodbye, it's because I've been through the short goodbye, and that is way worse. In retrospect, there's nothing I can go back and and redo for my father, but I had six years, five years, to make dementia the best we could for my mom and dementia doesn't want you to make anything best.
00:28:26.960 --> 00:29:09.359
So there was a lot of failure and a lot of horror and a lot of horrible but there was also a lot of hilarious. Yeah, it sounds like it. I mean, just your personality, you bring on the hilarious. I could see that my sister and I were working with the sense of humor our family instilled in us, so maybe that made it easier for us. I don't see how people can get through this without some sense of humor, but it's not my job to judge however people are getting through dementia. If it's working for you, don't change it until you have to because dementia is going to zig when you think it's going to zag. I just know that for us, we had to have that sense of humor.
00:29:09.420 --> 00:29:11.640
Otherwise we would have just drowned. So, oh
00:29:11.640 --> 00:29:19.980
yeah, the levity, yeah, because some things are so ridiculous, you just have to laugh. You have to laugh. I mean, they're so sad, right?
00:29:20.460 --> 00:29:24.140
Yeah, that's when one of writing a blog. Sorry, yeah. So that's what
00:29:24.140 --> 00:29:32.359
I was just gonna get into. Perfect Yes, I was gonna say one of the things you did at cope during that time was to write this blog. So tell us about it. I
00:29:32.359 --> 00:30:16.259
needed something creative to do in my life. When I had Lexi here, sometimes it was three days a week, sometimes it was two, but I had time off once there's still all your life you have to take care of. But I was like, why don't I start kind of processing this? And I love to write. I wrote about the funny stuff that happened. I wrote about the horrible stuff that happened. I can go back and read those posts now. And I've written about some of the days when I was the world's worst caregiver, and I've written about the days when I couldn't get out of bed. I can hear I know she needs to go to the bathroom, I know she needs food, and I'm like, I can't, I can't.
00:30:16.859 --> 00:30:31.819
I literally cannot get up and help you right now, mom, feelings that you have, yeah, and eventually you do. But you know, I wrote, I didn't write about research. I didn't write about what the professionals are saying. I didn't do any of that.
00:30:31.819 --> 00:30:42.039
I wrote about what our day was like. I wrote about the time where we found a pair of reading glasses in mom's butt cheeks when I pulled down her pull ups.
00:30:37.700 --> 00:30:50.799
What is going on here, so there was a lot of humor in it, and that's how I built a community of caregivers around the world.
00:30:46.480 --> 00:30:53.680
And we were huge, maybe 500 of us at the most, but people
00:30:53.680 --> 00:30:55.119
who were
00:30:55.119 --> 00:31:01.380
also looking for something outside of the continuous tragedy, and they were experiencing
00:31:02.339 --> 00:31:05.400
the horrible, but also
00:31:06.480 --> 00:31:09.539
there is so much life in the end of life journey.
00:31:09.960 --> 00:31:37.220
And that's what we were all like. Why isn't anybody talking about that? Oh my gosh, I finally found a group of people that you're talking about the good and the bad. And that's how we came together. And some of those people became so instrumental to me, they would leave posts on the on the blogs after they'd read them, or they'd they'd email me, or on forums. They'd make little and they would just brighten my day.
00:31:37.279 --> 00:31:55.660
I'm having a terrible day, and I get this email that's like, oh my gosh, my mom put her poop in this area. We knew we could spell it, but we couldn't find it, and we could laugh about this stuff. And these people became friends without ever having met, and they meant the world to me. I
00:31:55.660 --> 00:32:07.440
bet they could totally like you said. They could totally relate to what you were going through, and I'm sure that your hard days that you wrote about. They were probably right there saying, Oh, me too.
00:32:03.839 --> 00:32:10.259
Me too. I've had these terrible days. I feel awful about them.
00:32:07.440 --> 00:32:10.259
Yeah,
00:32:10.440 --> 00:32:16.920
a group of us who were, I was the one writing about it, but we were all processing this in very similar ways.
00:32:18.119 --> 00:32:21.079
Yeah, good. And you were willing to air your dirty laundry.
00:32:21.680 --> 00:32:23.839
I don't know what else to do with dirty laundry.
00:32:24.200 --> 00:32:26.900
Yeah, and just your ability to put it out there, I'm
00:32:26.900 --> 00:32:35.720
sure, helped people feel closer to you. You were relatable, like you are a model caregiver, because you're showing the sides, all sides of it.
00:32:36.079 --> 00:33:42.940
I always think of it a little bit differently. Is people would read my blog, or they watch the movie, and they're like, Okay, she's a mess. If she can get through this, we can definitely do better than that. I set the bar so low, and he feels a lot of hope that they get better. Okay, so your mom dies, right? You want to talk about that a little bit. That was a crazy, crazy time. That was what, February of 2021 remember? Okay, so in 2021 in the winter, we were having really severe weather all over the country. Remember, Texas went down like their whole power grid went down well before Texas happened. We had an incredible ice storm here in the Portland, actually, in the whole Pacific Northwest, some places got more snow, like two feet of snow, which we don't see stuff like that. We got ice mixed with snow. It took down, I think, almost 65 miles of towns like Wow, all of the power was out.
00:33:43.359 --> 00:33:56.859
That's really stressful when you have a late stage dementia person, because you know where to put them. You don't know anywhere to go, and she couldn't stay in a cold house. So that started the end of mom's life.
00:33:51.339 --> 00:33:56.859
We had to find a place to live.
00:33:57.220 --> 00:35:02.579
Stayed with a friend. Mom slipped on a rug in their house that they repeatedly said, Do you want me just put pull that up? I'm like, No no, because I didn't want to put them out any further than they did. Broke her hip a whole week of now. Mom needs hospitalization. We still can't get the power on. I can't get her home. You're not fixing her. You're not going to do MRIs and figure out and we're going to fix the hip. That's none of that's happening, but just trying to find somebody who would take her in, in a hospital and not medicate her besides painkillers, it was a nightmare that sounds like a nightmare, and actually, the funny part about the blog is, those are the posts that people read the most, because it just starts, it's, it's like a month of the absolute epitome of what dementia really means, everything that could go wrong, yeah, everything that can go wrong. And how, amazingly enough, you find ways to get through it. So, yeah, after she broke her hip. She was she didn't really get up again.
00:35:03.059 --> 00:35:08.460
She stayed at a friend's house or where? Well, we finally got her home. You got her home? Yeah,
00:35:08.760 --> 00:35:18.960
we already had hospice, so we knew we were close to the end anyway, before all of this happened hospital, our hospice was absolutely wonderful, and
00:35:18.960 --> 00:35:23.179
she couldn't bear weight, so there was no getting up out of bed at this point. Is that right? Still?
00:35:23.179 --> 00:35:24.320
Tried, she
00:35:24.320 --> 00:35:27.019
tried, oh, gosh, oh, she
00:35:27.019 --> 00:35:30.860
was so stubborn.
00:35:27.019 --> 00:35:35.719
Oh, god, that was another different person, another personality change. Boy. She got stubborn as she got older and more dementia.
00:35:36.440 --> 00:36:17.639
Well, you can just imagine, and I see this all the time, especially in facilities like in rehab centers, like imagine not getting up to go to the bathroom or broken hip, whatever. It doesn't matter you want to get up to go to the bathroom and you're going and you have dementia and you don't know your hips broken even as you're falling same in the hospital, you're connected to all these IVs and monitors for your heart and all this stuff. You're getting up to go to the bathroom because you have to go. It's really hard. Of course, someone gets agitated. I don't know if she had to go to the bathroom, or maybe she had to go to work, or I don't know what she once you
00:36:17.639 --> 00:36:28.699
just paced all the time. Anyway, mom's always on the move. If we weren't driving her around, she was moving all around this house. Wow. Also made it really hard to find a friend who would take us in.
00:36:26.119 --> 00:37:11.579
She's like, she's gonna be everywhere right behind her. But that doesn't mean I can catch everything she does. Yeah, of course. And you couldn't catch her when she fell, like, you can't be there every minute it was rough. Yeah, that sounds rough, but we got her to the end, and by Lou and your sister were there, yeah. And actually, at that point in time, we had hired a third person too. We hired a third caregiver to help us for the last two years of mom's life, because we were just exhausted. So it was the three of us, ladies and the nephews and her, she had nine brothers and sisters. A lot of my aunts and uncles came and like a big party there for about three days
00:37:12.840 --> 00:37:15.659
at the end. You mean when she was dying, yeah,
00:37:15.719 --> 00:37:42.219
and then the last two days were just us. She held on for a long time, and that was really hard, and that that got to the point where it's like, both my sister and I at different points, we would talk at night after we'd given her morphine, and I'd be like, I told mom to go. I'm like, Mom, you know, there's nothing left here for you anymore. There's no coming back. You're never gonna get better. It's time to go
00:37:42.820 --> 00:37:45.519
get her permission. You know you'll be with dad,
00:37:46.599 --> 00:38:10.320
but even then, we'd have some sense of humor about it. At one point, Lex told mom to wrap this up, so she falls on this time to wrap this up. It's a wrap there's so many tears have been shed, and you're dehydrated and you're exhausted every moment you think it's gonna be the last moment. So you're holding your hand and saying soothing things, and finally you're like, Oh God, I gotta go to the bathroom. Are you gonna wrap this up, mom?
00:38:12.119 --> 00:38:16.139
I'll stop. Oh my gosh. Hilarious.
00:38:16.199 --> 00:38:25.099
It was, it was terrible. But again, it was our sense of humor that allowed us to at least have some breaks from just that emotional
00:38:26.000 --> 00:38:40.420
exhaustion. Yeah, the only way to get through really so your mom dies, and how long after that, did you decide to do your movie? Well, okay, so
00:38:40.420 --> 00:39:05.639
the idea for a movie kind of came in stages, even before mom started the act of dying. Stage when we knew we were getting close. I remember thinking about the turn of of the new year, about all these friends that I had made when this is over. You know, what I'd really like to do is just get in my car, drive away from this house and go meet these people.
00:39:06.119 --> 00:39:43.119
I just want some freedom. I want to be away from this dementia household, and I want to meet these friends and bring them a bottle of wine and a pizza and just say, Good lord. Thank you so much. Thank you so much for what you did for me. So that's how it started. And then, because they can't leave anything alone and make anything simple, I started thinking, well, maybe the conversations that we're gonna have might be very helpful for other caregivers. What if I just, like filmed this? And then I thought, well, if you're gonna do that, why don't you just hire a DP and a sound guy to come with you.
00:39:43.480 --> 00:40:19.800
And let's really do this. And then I decided to buy an RV. You Give a Mouse a Cookie? Yeah? I got a logo done this, of course, went completely overboard. Thank God it did. Yeah. The only reason I could do this was because, even though this disease was very long. My parents had had resources. So by the time we got mom through this, there was still a little bit of money left for my nephew, my sister and I, so I probably blew mine on a dementia family caregiver documentary, which my dad is still furious, wherever he is, but I spent his money on an art project.
00:40:19.920 --> 00:40:25.460
He's worth a dad, it really was.
00:40:19.920 --> 00:41:19.079
Let me try and tell him. So you embark on this amazing journey around the country to meet the women who you befriended on your blog, yeah. And so you created this movie, wine women and dementia, and went around in the Irv with your mom's picture on it, interviewing these women talk about that. I thank you. I did watch the movie, and it was wonderful. I like at the beginning how you have statistics that you put out there, because they're staggering. The numbers are staggering. Yes, yeah, you said there 55 million people live with dementia worldwide. 6.5 million are in the United States, yes, which translates to 16 million are dementia family caregivers, correct? So that means for every person, there are several caregivers. So this is, this is huge. That's a huge number of caregivers out there.
00:41:20.039 --> 00:41:27.440
And these statistics have changed too, although I think that the caregiver one has remained steady, whether
00:41:27.440 --> 00:41:29.420
they went up a little bit or down a little bit.
00:41:29.719 --> 00:41:48.760
Those are big numbers. Yeah, yeah. And and so your whole journey, your road map around the United States, which you illustrate beautifully in the movie, really illustrates the road, I mean, the difficult times that you have, everyone has.
00:41:49.480 --> 00:42:16.440
It was so funny, because when I thought about the people I wanted to go visit, that was in the beginning where I was like, No, these are the people. These are the people who meant the most to me. And if I had had money, I could have gone over to England and met some people, and a couple of people in Australia too. But I didn't, and I just started out thinking, Who would I love to go see? Who do I wanted to say thank you to the most. So finally, when I started to think about it in terms of a film, I'm like, Okay, we need to keep this to the US.
00:42:16.860 --> 00:42:50.739
After the fact, I started looking at the cast members, and I'm like, All right, we've got frontotemporal, we've got Alzheimer's, we've got vascular and we've got Lewy body. So that's a pretty good I was happy that we had that kind of diversity. Most of us were kids all over the country, Seattle, Chicago, New Hampshire, Amherst, New Hampshire, Atlanta, Dallas, Pennsylvania, trap PA, which I got lost in for two hours on foot with my poor dog, who all he wanted to do was go home and sleep. Oh, my God, did
00:42:50.739 --> 00:42:54.039
you feel like your mother? Oh, my I did.
00:42:54.400 --> 00:43:53.619
I'm telling you know, we had conversations afterwards about that. It's like, is this the beginning of the end for me, I was happy that the people that I chose. Showed a lot of the diversity in dementia, because it's a documentary, and because of the way these people are the ones that I chose to go visit. It's not as racially diverse as I wish it was, because the black and brown communities are hit so much harder than than the white communities, and we're mostly white kids in this thing. And it also looks like we all have money. They're all kind of nice houses. And I always think that's funny. I wish I would have said we may be living in an apartment. What's that like? You don't realize that both Veronica and I are living in our parents house. That's the only reason why it looks like we have this steady income. But those are two things that I wish for were different, and I think I'd like to stay in the storytelling space, and then I can be more responsible about that. In this case, those five people were the five people I was gonna go
00:43:53.619 --> 00:43:59.019
visit. And you had to get people to agree to this, which was probably no, you not had single person question
00:43:59.019 --> 00:44:10.980
me really. I was like, okay, so if Roseanne doesn't want to do it, who else would I really want? I was like, Oh, but I really I hope she does it. Every single person I send an email to or a text to is like, yep. When are you coming?
00:44:11.340 --> 00:44:14.820
Wow, people are willing to tell their story.
00:44:14.820 --> 00:44:27.920
Isn't that great? I think we were just really excited to meet each other. Yes, I knew we weren't intimidated by like, a sound man and a camera man. The camera dude had to tell us to shut up. He's like, stop.
00:44:28.039 --> 00:44:33.260
We do not have the camera set up yet. Am I gonna have to separate you guys?
00:44:31.159 --> 00:44:47.679
Because what you're saying already is stuff we should be having on film. We just were so excited, and you just forgot that there was a boom mic hanging over you. You were just so excited to talk about your your tails, tell your tales, to hug
00:44:47.679 --> 00:44:52.179
and to really just embrace each other. Yeah, to connect
00:44:52.360 --> 00:45:02.579
is we already knew we got each other, although I think every single time my friend Beth came with me, and every single time we were playing. Up to her house. I was like, Bethany, what if they don't like me? What if,
00:45:03.360 --> 00:45:05.460
oh, my God, there's a guy who doesn't like you.
00:45:05.579 --> 00:45:16.440
Oh, we ran out to park the RV in their driveway for the night, plug into their electricity. I'm like, what if this goes really bad, and they try and throw us out. We have nowhere to go. All right. We'll be in front of your mailbox, then
00:45:17.099 --> 00:45:19.739
we'll be tooling around. But it went really well.
00:45:19.739 --> 00:45:26.300
It looks like, I mean, the movie, the way it's portrayed, it went really well. It seems like, with everyone amazing. It
00:45:26.300 --> 00:46:46.239
was amazing. If it's something that I needed for processing and healing, and I don't think you can get over what you've been through in a 30 day production tour around the country, but it certainly helped. Yeah, and I also wanted to make an entertaining movie. I don't know how many people have watched like the dementia movies or read the dementia books, but there, there's not a lot of entertainment. There's just a lot of tears. Like, that's actually what I noticed is, in your movie, there's a lot of laughter. There's a lot of funny shit in dementia? Yeah, I'm guessing that a lot of caregivers and dementia households are utilizing the same tools that we are. It's just not showing up in any of the forward facing media. And I thought I may be wrong about that. I may put out a film where 90% of caregivers go you are so disrespectful, and this is a tragedy and an absolute travesty, but that hasn't been the experience a lot of people have. Like, finally, I'm seeing something that reflects what I'm going through. I'm not the person on the screen, but those are my stories, whether they're the horrible stories or whether they're the funny stories that that's what I'm living.
00:46:43.719 --> 00:47:06.480
That could have been my night last night. That's almost verbatim how my week went last week. And they're seeing themselves for the first time in the journey represented as they're going through it. Yeah, and whether you choose to bring laughter in it or not is you're right if you want to stay it is a trace, tragedy and a travesty.
00:47:06.599 --> 00:47:19.440
It's all of those things. It's terrible, every bit of it. But to bring levity can only help you in the situation. I mean, what you go through, oh my goodness,
00:47:19.800 --> 00:47:38.360
I say in the film, and I say this very often to people who contact me, whatever you're doing right now. And and if that is working for you in dementia, if the tragedy narrative is working for you in dementia and that's helping you get through it, don't change it.
00:47:33.679 --> 00:48:23.480
Keep it up. Keep doing that. But all I saw was the tragedy narrative, and that wasn't working for me, and that wasn't, turned out it wasn't working for a lot of people. So check out the film. You may find one thing that you can take away from it going, I would like to try that in my house and see if it works for you. You may find 20 things where you're like, Wow, I've never thought about doing it that way. I never thought about this. I never thought about looking at it like that. I think this is going to help our journey in a bigger arena. This is tough. However you decide to get through it, trial and error, keep it up. All I'm saying is I have a different perspective.
00:48:19.860 --> 00:48:27.260
The people in the in the cast, had a different perspective.
00:48:23.480 --> 00:48:33.980
Some of it might help you. All of it might help you. None of it might help you. It might help you to go, I don't ever want to go through dementia like they did. Yeah,
00:48:34.039 --> 00:48:54.519
that's okay, but I think you're right. Like, how can laughter be a bad thing? It isn't for us, No, and it's, I don't see it as disrespectful. I see it as just a different perspective. Yeah, I mean that things are so sad and right, laughing and crying, there are ranges of emotion, and it's okay to have it all. And I
00:48:54.519 --> 00:49:08.039
just can't make that blanket statement, because I'm sure there is how many people, how many billions of us are there on the planet. Maybe laughter never works for five of them. Just, I don't want to judge anybody Absolutely.
00:49:08.099 --> 00:49:11.519
We don't know.
00:49:08.099 --> 00:49:23.599
No judgment, no judgment. But if you can bring some levity, I think it would make anything easier. I think it would too. So this is a really exciting month for you. Do you want to talk about the movie and what's happening in November.
00:49:23.719 --> 00:49:32.179
Absolutely, the film got picked up for PBS distribution. This isn't like the novas or the masterpiece.
00:49:32.179 --> 00:49:47.679
This is PBS takes small independent documentaries and slots them in station by station, programmer by programmer. So our film has been picked up by PBS. It is being released this November for national family caregiver month.
00:49:48.099 --> 00:49:57.880
So excited. It just took I've gotten the film to 1000s. PBS is going to get the film to millions. So exciting, Kitty.
00:49:57.940 --> 00:50:02.460
It's incredibly exciting.
00:49:57.940 --> 00:50:42.579
Because what I want is caregivers to see this film. I want them to see themselves. I want them to feel celebrated. I want them to feel heard. And I can't do that all on my own. So having PBS pick us up like that is just amazing. We're going to have it on our we'll have it on our website where you where you pop in your I think it's going to be your zip code, and then it'll tell you if the film is scheduled for your market. You can also contact your PBS programming station and ask them if they are planning on bringing in wine women and dementia. This film is available to PBS to be programmed for the next three years, June for Alzheimer's month, I think in February, that's national caregiver day.
00:50:42.760 --> 00:51:07.920
Any old time you want to call and say, Hey, I think our community needs this. You should probably be programming that please do. I'm also releasing the film for VOD DVD and blu ray sales at Thanksgiving. You can go ahead and do pre sales on the website at Wine women and dementia, and give a gift to a caregiver is awesome.
00:51:04.320 --> 00:51:07.920
Congratulations. Thank
00:51:07.920 --> 00:51:24.019
you. And your tab line, which I love, until there's a cure, there's community. Love that. And so true kitty. Thank you for being here today. It's thrilling to talk to you. I'm so excited.
00:51:20.539 --> 00:51:30.739
Congratulations. You've done amazing work for caregivers all over the world, and as a professional, I just I so appreciate you. So thank you.
00:51:33.619 --> 00:52:00.659
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