Listen and hit ≡ in the player to subscribe on your favorite podcast platform! Or if you'd rather see our faces 👩🏽⚕️🧑🏼⚕️watch it here on YouTube.
Summary
This episode of CareLab features Vincent Zappacosta and Douglas Christensen, co-authors of Dementia Mama Drama, as they share their caregiving journey for Vincent’s mother. They discuss the challenges and joys of caregiving, highlighting the importance of advocacy, building relationships with healthcare staff, and finding positivity in difficult situations. The conversation explores how music, routine, and creativity fostered meaningful connections and improved the caregiving experience. The hosts, Dr. Brandy Archie and Emilia Bourland, emphasize the significance of caregiver involvement and practical strategies to navigate care with compassion and flexibility.
Key Takeaway
- Advocacy is Vital Caregivers should actively communicate and advocate for their loved ones, ensuring their unique needs and preferences are met, even when healthcare systems suggest otherwise.
- The Power of Music Music tailored to personal preferences can uplift moods, aid memory recall, and create joyful moments, especially for individuals with dementia.
- Routine and Familiarity Matter Maintaining a structured and familiar routine helps reduce stress, improve mood, and enhance cognitive function in caregiving situations.
- Build Relationships with Healthcare Staff Knowing and collaborating with the care team—nurses, custodial staff, and even other residents—creates a supportive environment that benefits everyone involved.
- Creativity and Positivity Go a Long Way Leveraging humor, shared activities, and creative outlets (like writing or acting) helps caregivers cope and turn challenging experiences into meaningful and positive memories.
Transcript
Dr. Brandy Archie
We're here. Welcome to Care Lab. It's a Care Lab day, which is the best day. Welcome.
Emilia Bourland
Welcome to Care Lab. We're here. Yay!
Emilia Bourland
Yeah, and we've got two guests on today here to share their caregiver story. Let me tell you a little bit about one of them. So we have here Vincent Zappacosta, who has a background in graphic design, theater, and yoga. His book, Dementia Mama Drama, is about the daily doses of dementia with his mother and how he and his husband dealt with it through humor and music. It focuses on the positive rather than the negative in caregiving.
He's a strong advocate for dementia and Alzheimer's and is spreading his positive message through international podcasts, interviews, and social media. His writings have been published by several leading Alzheimer's organizations, and Vincent and his husband Douglas Christensen recently premiered their play, Some of These Days, spelled D-A-Z, about their caregiving experiences at the Fringe Festival. Currently, they're working on a treatment for a series based on dementia mama drama.
Dr. Brandy Archie
And we also have Douglas Christensen here, who comes from the world of theater and dance, and he traveled performing internationally and loved experiencing different cultures. And after moving to New York, he worked in publishing and eventually met Vincent Zavacosta. Fast forward many years later, we won't say how many, they're still together and continue to make each other laugh. His role as a co-caregiver for Vincent's mother added another level to their relationship and their journey is brought.
Emilia Bourland
Hahaha
Dr. Brandy Archie
to life in the book Dementia of Mama Drama. And they continue to participate in podcasts and interviews supporting caregivers and Alzheimer's by sharing their experience. So thank you so much for both of you being here.
Vin & Douglass
Well, thank you for having Thanks for having us. Yeah, for sure.
Dr. Brandy Archie
Okay, so we got all the formalities out the way. Now we have to, you have to answer a icebreaker question and you have to answer it first because we're rude people and so we let the guest go first. And it's not gonna be that challenging and it shouldn't be weird, I don't think. But here's what I want you all to know, want you all to answer.
Vin & Douglass
Yes.
Emilia Bourland
I
Emilia Bourland
Mm-hmm.
Emilia Bourland
Wait, hold on a second. It shouldn't be weird, I don't think. That is definitely, that's what you wanna hear before someone asks you a mystery question on a podcast.
Vin & Douglass
Ha ha!
Dr. Brandy Archie
I I gotta leave it up.
Vin & Douglass
Yeah.
Dr. Brandy Archie
A miss- a mystery question.
Vin & Douglass
Okay, I'm starting to sweat. Yeah, starting to sweat a little now.
Emilia Bourland
Yeah.
Dr. Brandy Archie
I know, there's no need. I have a lot of bark and no bite. I actually want to ask everybody, when I say the word memory, what's the first thing that comes to your mind?
Vin & Douglass
Good feeling.
Dr. Brandy Archie
Mmm.
Vin & Douglass
Good feeling. For me, it was cloud sky, something high, floating memory.
Emilia Bourland
That's so interesting.
Dr. Brandy Archie
Yeah, I love it. And I also appreciate that y'all just did the word association and like didn't explain, just give us what the first thing comes on your mind. Amelia, what's first thing that comes to mind when you hear the word memory?
Emilia Bourland
Aw, I'm such a nerd. I'm thinking about like memory and coding and like the attention process and getting things from working memory to short term to long term took me back to yeah, basically such a nerd.
Dr. Brandy Archie
a thesis statement basically.
Dr. Brandy Archie
That's why word association is such a good tale of personality because it's like the first thing that comes to mind. When I think of memory, mine's similar to Vince's actually because I think of goodness, you know, because I'm the kind of person who lets memories go really fast if they're not good and it's like it never happened. So to me, my memories are good.
Emilia Bourland
What about you?
Emilia Bourland
Mmm.
Vin & Douglass
Yeah, yeah. mean, the other thing, thinking about it a little bit, but not really, because I was listening to you two, like our home and everything that we surround ourselves with has a memory attached to it. And obviously, there's no negative vibes there, otherwise we wouldn't have it around us. So everything means something good. So we can be walking through an apartment, our home, and just looking at a painting or a book or something. And it's like,
Dr. Brandy Archie
Mmm.
Vin & Douglass
Mm, yeah, this is it's good feeling. It's a good energy. And so it evokes a memory of something or why we have it or where we got it or who gave it to us. So it's usually a good good feeling. Yeah.
Dr. Brandy Archie
Mm-hmm. Yeah.
Emilia Bourland
So I think that's such a wonderful segue into talking about y'all's story and of course, Vin, your mother, Anna's story. Did she pronounce her name Anna or Anna? I should have asked that before.
Vin & Douglass
And actually for her anything just call her. Really. It's hey lady, Anna, Anne, yeah, but Anna.
Emilia Bourland
Hahaha!
Dr. Brandy Archie
Hahahaha
Emilia Bourland
That's so funny. always say when people, because I get called like Emma or Emily or something like that, I'm like, just say, hey, you just say, hey, you and I'll turn around.
Dr. Brandy Archie
And that'll work.
Vin & Douglass
Yes.
Emilia Bourland
but that's such a good segue, that question and y'all's association with it into talking about your story in Dementia Mama Drama, because so much of what you focus on is the good and the positive and the good memories that you made even while your mom was struggling with dementia. Can you, you know, start by just sharing a little bit about your background and story for folks who might not be familiar with you or your story already?
Vin & Douglass
Well, sure. mean, when we started, when we found out that my mom had dementia, she had other health issues also. So it just escalated. So it wasn't purely dementia. And that's why when we wrote the book, it was about caregivers, not just about dementia, because we're all caregivers in one level or another, whether it's children or family members.
Emilia Bourland
Mm-hmm.
Vin & Douglass
You know, there's different levels of caregiving. So I think it encompasses everything that we will all go through at one time or another. And I say if we're lucky because we learn so much from it and learn more about ourselves from it. when I first found out that she did have dementia on top of all these other things, it's like, what is dementia? So of course I'm Googling and I'm looking up
books that were out there and stuff. And I'm one that I don't like to follow the rules necessarily. And you're pretty much the same way. I couldn't get through a lot of these readings and stuff. I was like, this is too clinical. And it's great if that was my mindset, but it wasn't. So I said, okay, we just got to figure it out and feel. Well, and also when we were going through the experience of all this, was,
Dr. Brandy Archie
Yeah.
Vin & Douglass
several years ago before, I mean, this was in the early 2000s, because we took care of her for like 13 years, but there wasn't a lot of information. There wasn't a lot of caregiver support groups. wasn't. Now there are so many more, which is great. But then it was like, you you're kind of flying by the seat of your pants, you know, trying to figure out what do we do? How do we deal with it? So we did it in our own way. Yeah, because a lot of things that I would read, they say,
Emilia Bourland
Mm-hmm.
Vin & Douglass
don't do this, don't do, these are the definitely don't do's. And it's like, but this works for me, you know, don't, but so it's, that's why you have to know your loved one and, just go with that. And this- Because you're the only one who really knows your loved one. mean, the doctors, the nurses, I mean, people deal with them on a daily basis, but you're the one who really knows them and what's, how they work. So,
You need, mean, and he always was, you know, you gotta be the squeaky wheel, you know, to get things done and to make sure that your loved one gets the care that they need. I squeak, I squeak. I just always ask questions. If I don't know anything, it's like, there is no stupid question. So you go from the beginning and it's like, if you told me, A, why is it A? Do we have another option? Is there something else we can do? I mean, you just need.
Dr. Brandy Archie
Hehehehehe
No.
Vin & Douglass
I needed to do that because I wanted to get all the information that I can gather that I can comprehend and utilize it in this situation. Well, okay. To your point, to your first question was how this all sort of started. I mean, we've got sidetracked a little. I guess. that we, you know, being with her daily.
Dr. Brandy Archie
You
Emilia Bourland
Welcome to CareLab. That's what we do here.
Dr. Brandy Archie
This is what we do, sidetrack, this is totally fine.
Vin & Douglass
about how we started doing this and why how the book came and working Vin was writing a blog because he had to get his stuff out and and and it also included her. We told her we're writing about her and we would videotape her and she loved it. She loved that attention. She loved getting her picture taken and you know she felt part of that whole experience you know.
So it had helped her as well. So during our nightly visits and sometimes we were there like twice, we were pretty much there every day. So we knew the entire staff, which is another point in any caregiving level situation to know the staff, because they're an extended family. And you all have to get along and be on the same page. mean, many times they didn't know what to do and they would call me at two o'clock in the morning or something. It's like, your mama is up and it's like,
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
darn, okay, give me the phone, I know what to do. Or have you tried singing to her? Have you tried asking her to sing? Did you do this? She says you're coming, know, whatever it was, we worked on it together as a group. So that was really important and vital.
Dr. Brandy Archie
I think that collaborative level of care is so important, and the highlight being that you know your person best, and that you're the through line to this whole thing. And so doctors and nurses, therapists, we come and go and are very well educated on the processes that are happening and what to do, but not very well educated on who she is and what works best for her. And so that's why the caregiver is a really vital part of it.
Vin & Douglass
Yeah.
Vin & Douglass
individual.
Dr. Brandy Archie
I really highly encourage people to do exactly what you mentioned in the book, which is one of the things I highlighted there was like, you need to be the primary advocate and you need to say something because everybody doesn't know. And if they don't, just going to steamroll through and do the things that they normally do. And that might not be the best thing for your person. And you're okay to ask those questions. Like you said, like, why, okay, if that's what you want to do, is there an option B?
Here's why I feel a little concerned about that. And if they explain the reasoning to you and you're like, okay, I understand why you want to do option A, you can feel confident about that. But you can't do that if you just wilt in the corner and say, well, they're the experts and they know best. You're both the experts.
Vin & Douglass
Exactly.
Vin & Douglass
Right. Yeah. Yeah. Because the first thing, I mean, just a really short thing, one of the first things in the first place that she was in after her operation was the social worker said to me, you come and visit your mother too often, stay away from her for a week. Yeah. Yeah. Well, I almost slapped her across the face. Yeah. Yeah. Because I said, said, listen, you do not know the relationship I have with my mother and we've always had.
Emilia Bourland
What?
Vin & Douglass
If I wasn't here for a week, she would crawl up and die or she'd try walking out of this place. So I know what she wants and I know it's going to freak her out if I'm not here. So thank you very much, but that ain't gonna work for mama. That's that. But that was the first thing, that's the first time I said, you gotta really like know and do.
Dr. Brandy Archie
Mm-hmm.
Emilia Bourland
Yeah, wow, I can't even think of a scenario where I would tell a family or suggest that a family member be less involved. If anything, I feel like I've spent a lot of my career trying to get like more involvement from all the stakeholders, right? Because, yeah, because to your point, this is a team effort. It's a collaborative effort. One of the things that I highlighted when I was reading Dementia Mama Drama was your section that you brought up just now,
Vin & Douglass
Yeah.
Dr. Brandy Archie
Yes!
Vin & Douglass
A lot of people aren't involved.
Emilia Bourland
about making sure that you get to know all of the staff who works in the place where your loved one is living. And that's the CNAs, PCAs, nursing, the janitorial or custodial staff, like the dining staff.
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
Absolutely. He knew everybody's birthdays. He remembers that. And that builds a good relationship if you know people and what they're doing and where they come But also it was genuine. It wasn't BS. Because to this day, I'm still in touch with a lot of the people that were associated with our time into our lives, the three of our lives. So that says a lot right there.
Emilia Bourland
Yes.
Dr. Brandy Archie
Mm-hmm.
Emilia Bourland
Yeah, I think it does. it is so important to have a relationship of trust and honesty and buy-in from everyone. So kind of fostering that goes a long ways. Because at the end of the day, if you need something for your loved one, if you needed something for your mom, and you needed someone in that building or in that community to do it for her, you're much more likely to have success in that.
If you have a relationship with them where they know where you're coming from, where you know where they're coming from, and you can really genuinely work together. I think so many times, unfortunately, it can get to be kind of adversarial. And if people kind of sort of follow your good example of building those good relationships upfront, we can avoid that and have a much more positive experience overall for everyone.
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
Recently one of the social workers, not a social worker, she did entertainment, Nettie. She did recreation. We were in touch and actually she even put us on a podcast a while ago because she has this place in New York and stuff. said, you guys were just such a great couple and like a positive force. I'm going to be in touch with you. Anyway, what I told her before we started filming was she said, I said,
I would always think y'all thought I was a pain in the neck because, and she said, contrary, she said, when you came in, we were like, thank God, we can like take a break now, he's got this under control. And it's like, well, that was really good to hear. Cause I always thought, God, am I, you know, being a pain? And she said, contrary, contrary. So that was cool.
Dr. Brandy Archie
I think that's like so, it's so important because if you think about relationship building, we talk about it in maybe business or maybe like advancing your career, but we don't think about it for healthcare, I don't think. And the people providing healthcare are still humans. And while you want them to kind of act like robots and do exactly the right thing every single time, they're still human beings. And so building a relationship can go a really long way. And even with y'all visiting her every day,
you're still not the people she saw the most, you know? And so you want those people to know who she is and that you're resource and that they can call you. And because otherwise sometimes people do things that are not appropriate and you want to make sure there's an open line of communication. So I think that's like such a strength in a time when people should be supporting you.
Vin & Douglass
Yeah.
Emilia Bourland
want to shift the conversation a little bit now to one of the big overarching themes of the book, which is your your mom's love of music, and how y'all were able to use music and harness the power of that love to really create joy and positive experience for for everyone. It can really be so powerful, especially for
for anyone, especially in kind of dementia care situations. Would you talk a little bit more about that?
Vin & Douglass
Sure. Music, mean, music for me came at an early age because my mother came from a family of 13. She was the youngest of 13. She was the baby, you know, and her mom had passed very early. But her brothers and sisters would get together whenever we would have family functions, which was like a lot because it's a New York Italian family. So we got together a lot. They'd bring their guitars and they would be singing. It was just part of growing up.
Emilia Bourland
Wow.
Vin & Douglass
At the time I was a kid, so it's like, God, I have to hear this again. You know, but as it came, I realized she loved music and she was a singer to a degree. She auditioned for Kitty shows and she was on Kitty shows. All these things. she would bring up these stories and we would talk about them. And then she would just start singing every once in while, especially if she was like, I can tell she was feeling blue and she would just start singing. And it's like,
Emilia Bourland
Mm.
Vin & Douglass
Okay, I think we got something here. So then I would sometimes sing along with her or it's like, she'd just be there. Cause sometimes, I mean, if you're in a nursing facility, you're not always the cheeriest person cause most of them don't not want to be there, you know? So I can tell she was blue and it's like, why don't we sing something? So that's when we started filming her.
singing it all, it just grew from there. Well, it always, no matter what, it could change her mood just like that. And she would forget about whatever and she would sing her favorite songs. And if she didn't know the words, she would always even make up the words and everything would rhyme. And sometimes she would sing these songs and know the lyrics to these old songs. It was like, how did you remember? I would say, how can you remember that? But you don't remember what you just ate.
Yeah. know, so she said, well, what do mean? You don't know those words. And it's like, no, was before my time. You know, but it was, but it was the best tool for us because it was something she loved and it always brought her out of whatever she was in. And it changed her mood. And it really, it was, it was magical, really music for us. And the thing to mention, Mama drama, the title of the book.
came because she was always, she always wanted to be an actress and she was always over the top. She just, that's the way she was. And the apple doesn't fall far from the tree, you know? she, so then we started filming her and then that was like, we created a monster. It's like, my God. So we would be there having coffee and cake because Guff had bet you don't bring coffee and cake when we're visiting if it was late at night. And she'd have her coffee.
Dr. Brandy Archie
You
Emilia Bourland
Ha ha!
Vin & Douglass
You're not gonna film me now? Okay, yeah, okay, let's go. And then I would ask questions and then it brought it to another level. it was also memory recall for her, but also so that I would learn more about things that maybe I didn't know before me or when I was too young to give a darn. yeah, music and then music, mean...
Emilia Bourland
Mm-hmm.
Vin & Douglass
we've learned from doing all the social media over the years, even after mama passed, was that it became like a hook, like people were doing this and it's like, we told you like years ago, this worked for us, it's gonna work for a few others, maybe not everyone, because also it depends on the type of music. Like there were certain times they would have like either a Gong circle or maybe classical or Asian music.
and she like, well that wasn't her thing. wasn't her thing. wanted Broadway and jazz. was it. Yeah. But you know.
Dr. Brandy Archie
That was her genre, yeah.
Emilia Bourland
Sure. It's personal. Music is so personal. Yeah.
Dr. Brandy Archie
But I think the thing that I think is so strong about this is y'all leaned into what was a part of her personality. But you also probably unknowingly leaned into science because there's even a whole discipline called music therapy, right? And it's used heavily in memory care facilities because it has such powerful purposes. And you're so right. Like it's not just the fact of having music. It's music that you connect with, music that you're used to from your experience.
Vin & Douglass
Yeah.
Vin & Douglass
Right.
Dr. Brandy Archie
And so it has its calming effects, but also like mood changing effects. And so people have studied it and there's a lot to go behind it. And you followed your instincts and did a thing and it worked, you know? And that's like so powerful.
Vin & Douglass
People in the UK especially, they have a lot of different organizations and stuff that support that. they were giving out, I forget the name of it because there's been so many and I can't remember everything right now. But they would hand out iPods for the residents there and they would notice a difference. So that's a big organization actually that follows us and very supportive. Well, I don't know if it's surprising, but there's a...
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
UK has a really big dementia community in social media that dementia that he's connected with and they're very positive and very out there, you know.
Dr. Brandy Archie
I have a question. I know that part of the reason for writing the book is to share your experience so others can learn from it, feel encouraged by it. But what would be maybe, and I would love if each of you answered this question, what would maybe be like your top two things that you always want to relay to another family caregiver from your own experience? what are the, if you would have known these two things before finding out her diagnosis of dementia, it would have been helpful.
Vin & Douglass
Well, it's back to I mean for you it's to always speak up Don't don't be don't listen to what they say and okay Well, that's it speak up if you have questions get get your voice heard because if you don't You know so many people just let let their loved one go. they have dementia there. They are okay now They're put away and you know, they don't know what's going on You need to you need to speak up. You need to use your voice
Dr. Brandy Archie
Hmm.
Vin & Douglass
Definitely communication was major in any situation, whether it's dementia, whether it's cancer, whatever the person is, just failing health in general, you need to communicate. the communication always has to be open one way the other. If you're not there in person, or because you can't be, to be on the phone, to have someone that you can trust there to support you and stuff. Like the few times
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
over the years that we were able to get away for a few days. We would always make sure that a friend or a family member would come and visit. And like, know, even like if we were away, I still get the daily, I would call to make sure she knew and just to keep her in a happy place.
Emilia Bourland
Mm hmm. One of the things that y'all I and I get you literally like you said this by name in the book and I haven't highlighted in there from when I was reading but one of the things that y'all really figure it out and leaned into very, very intentionally but also really intuitively that a lot of people could benefit from is was your embracing routine and familiarity.
and knowing that having that, keeping things familiar, keeping things, like when I'm teaching about caring for dementia, I use a model called DEFT and one of the Fs in there means familiar. Like keeping things familiar is so essential for quality of life and functioning and mood and things like that. And y'all really figured that out right away. How did you,
That's actually really hard for a lot of people, so how did you just come upon that so intuitively?
Vin & Douglass
Well, we would go by the schedule. we would try to keep some type of a schedule in a regular thing, whether or not it was, this is the best. And also from visiting at certain times of the day, know certain times when things were happening. So she didn't need us there then. So she's occupied, she's happy. That's good. Other times there's like nothing going on. It's like, we need to be there.
Emilia Bourland
Mm-hmm.
Vin & Douglass
And she was a late bird. always stayed up late. So she was always the only one or the last one in the day room or the recreation room. And there'd be nobody else. you know, that's we usually came after dinner. Most people would go upstairs and their dinner was at five o'clock. And it's like, I don't even have a cocktail at five o'clock. hey, but they went upstairs and there were still a few people and.
The other thing we did about speaking about community and knowing people that work there, it was also knowing the residents. So my mother was really kind of jealous because I would also like go to people that I saw that were just like sitting there like, you know, lost or just like not smiling. And I would just go over and like, hey, how you doing? And they would light up.
Yeah, it was important for us to interact with other residents that were there because a lot of people have no one and they're there by themselves. And just that one little hello or that reaching out meant so much to so many people. And you know, we got to know and his mother would be jealous. Like you said, it's like, what are you talking to her for? You came here to visit me. And it's like, do have Douglas to speak to now? Leave me alone. I got to talk to the nurses. What do you want from them? I can tell you. It's like, no, you can't
Emilia Bourland
Mm-hmm.
Vin & Douglass
But back to the point about the routine and stuff. I we knew she loved to play cards, so we would always play cards. And that was, are we going to play cards now? And so she would know, you know, the kind of things, the routine. And it just always fell into place that way for us as far as a routine. Yeah. And if we didn't, if we just like gave some downtime. Okay. So what are we going to do now?
Are we gonna play cards? It's like, okay. Yeah, let's play cards. And other times she's, okay, I'm over it. Let's, okay, then sing a song. know? Well, and exercise too. I mean, as minimal as it was, she didn't get any physical therapy much. once she was confined to a wheelchair, she was on a walker for the longest time. And then when we moved, they took away her walker and said she couldn't be in a walker. And that was like,
Emilia Bourland
Mm-hmm.
Vin & Douglass
A game changer. Yeah. Yeah.
Emilia Bourland
That broke my heart when I read that in the book. That made me more than a little upset and sad, actually.
Dr. Brandy Archie
Yeah, totally.
Vin & Douglass
Yeah. And they wouldn't, we tried to try. could get it. And if I couldn't get it, seriously, you couldn't get it because I, I knocked on every door and I said, you know, we'll, we'll do a waiver. If anything, golf a bit should happen. She's got enough padding. If she falls, she's not going to really hurt that much, you know, unless it's a head, but it's like, no, it changed her a lot because that would gave her her independence with her little Walker and she had all her stuff on it. And then she's in a wheelchair.
and she never could really figure out how to work it or how to get herself around. So she depended on people to take her to the day room or to take her to wherever, you know? So it was a horrible thing that she lost a lot of her independence. Yeah.
Emilia Bourland
which in turn probably affected her cognition as well. Probably her cognitive functioning got worse at that point too because she wasn't up and moving and engaging and participating as much. She wasn't able to go just see the things that she wanted to see or interact with as many people. And that has a huge impact on that. Yeah, that part of the story, honestly, it really broke my heart. And having been a therapist in, you know,
Dr. Brandy Archie
Yeah.
Vin & Douglass
Yeah.
Emilia Bourland
these kinds of communities and residences and really understanding and knowing what was happening there. was just like, I wish I would have been there. I would have stood up for her.
Dr. Brandy Archie
Man, exactly.
Vin & Douglass
Yeah. I I wish you were there too. But we, so anyways, back to that, well about exercise. So we knew she didn't get much. we would always incorporate that as part of our routine. And actually I got that from my, from my yoga training and stuff. Actually when I got one of my second degrees teaching older people, it's kind of yoga. I did that as a result of
Dr. Brandy Archie
Yeah.
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
what I was doing with my mother, it's like, if I'm doing this with my mother, there's a whole lot of people that I could be helping with this. So we would go there and if she was just sitting there, it's like, I was almost like, if you want your coffee and cake, you have to exercise. So like, we would do just real simple exercises and like she would go through it like, okay, I'm moving my hands, I breathe in, I can't breathe anymore.
Dr. Brandy Archie
And sometimes you gotta use some carrots, you know, gotta have a carrot and stick.
Emilia Bourland
Mm-hmm.
Vin & Douglass
Breathe out slowly. So we would do these relaxation because I can tell too, if she was uptight or just like stressed about something. So the breathing helps everybody. without breathing is essential. So that's, that's another key point to anyone. And before we would get in there and walk into the nursing home, sometimes in the second one, we may have had a, not the best of days, but
Dr. Brandy Archie
Mm-hmm.
Vin & Douglass
We like, we either hold hands or something and just like, here we go. Here we go, and I go, okay, breathe in now, forget our day, it's all about her. And that's tough because it's all about me, you know, so. No.
Dr. Brandy Archie
In the regular life, right? But I think there's a thing that you're hitting on that I think is really important and it's that this again that Leaning into what is needed and that actually having a whole lot of science and stuff back to it You know and so like you didn't have to over complicate it by reading a bunch of medical studies and you again are the expert at what was being what you could see being useful and then
Emilia Bourland
Hahaha
Vin & Douglass
Right.
Dr. Brandy Archie
For example, if I was the therapist, I could come back and be like, yeah, this is evidence-based treatment. Let's bump this up and add additional to it. And so I just want to say that out loud to encourage all the family caregivers that are listening, that there's a lot that you already know and that you are probably applying or think about applying and it's probably useful. And you should feel strongly about doing that.
Vin & Douglass
Yeah, definitely. You go with your heart and the feeling. Just like Doug said before, you know you're loved the one the best. you drag stuff out of the past and see which ones are going to work, like whatever they would talk about previously. And not only for dementia, this is for anyone. If they're just feeling bad, it's like you bring them their favorite food because who doesn't want to eat? I mean, seriously.
Dr. Brandy Archie
Yes.
Emilia Bourland
It is one of the great pleasures in life is food and eating, right?
Vin & Douglass
amen. Yeah. Speaking of which, he's going to drink some water. So was this the book that you said you read? can't believe I just did that. No, I can.
Dr. Brandy Archie
You
Emilia Bourland
That is the book that we said we read.
Dr. Brandy Archie
Absolutely.
Emilia Bourland
They're-
Dr. Brandy Archie
and s-
Emilia Bourland
There's, mean, listen, all day long, we'll do it again at the end. One of the things that I think y'all were very good at was really truly being in the moment. I also think it's so interesting that both of you have backgrounds in theater. And I wonder if having a background in theater helped you to be in the moment in real life with your mom, because like so much of
Vin & Douglass
Okay.
Emilia Bourland
Like if you think about improv, it's like, yes, and like, I'm just going to be here and go with it. Right. Do you think that helped keep you flexible and allow you to be in the moment with your mom more naturally than maybe that comes to other people?
Vin & Douglass
I think so. I think that that's a good point there because generally as an actor, you have a little bit more empathy or you're open because you're always studying characters that you're going to play. So you have to be open to things and you can kind of feel out the situation. But also like growing up in New York, I was very kind of street smart. Like I knew what was going on at an early age.
Emilia Bourland
Mm-hmm.
Dr. Brandy Archie
Mm.
Vin & Douglass
I just knew. yeah, but the theater thing definitely was Yeah, I guess probably subconsciously that really was something of, like you said, the improv sort of thing, because you're just here, we have to deal with this. What do we do? How do you get through this in a sec? Yeah. So a good tip would maybe be even if you didn't have theatrical background, now's your chance. Everybody wants to be in something. Come on.
So just make believe this, you're doing a show now, so come on, do it. Well, it was like we'd get there and it's like, okay, it's show time, here we go. For us, was a lot, mean, a technique sort of like, it was always about sort of distract and divert. Yeah, the duties. Get her away from that bad road and let's lead her into the good road today, whatever. So was the divert away from all that bad stuff.
Dr. Brandy Archie
Here we go. Yeah.
Emilia Bourland
There you go.
Dr. Brandy Archie
So before we go, I really would love if you tell us a little bit about the play and like why you decided to turn it, turn your, cause if I'm correct about the order, it was writing the blog posts and then writing the book and then turning the book into a play. And if so, why did you feel like you, so tell us a little bit about that.
Vin & Douglass
Kinda.
Okay, so you were right. The first part, it was about the blog and it was because it was helping all of us. But especially for me, I couldn't sleep at night because it's like, got to vent this. So I'd be typing and writing stuff. And then it became, it turned into a book, a shorter book, a shorter version, even though we do have more chapters to add to this one. We started doing this and we told a few people about it. And one of our
a director that we know locally said, you should make this into a play. And it's like, what? And it's like, that makes perfect sense. So we turned it into a 35 minute piece. For the Fringe Festival. the Fringe Festival. so we were in the Fringe Festival, which was great. And the really odd thing about what happened when they were doing auditions, they couldn't find, they found the perfect mama. she was great. She was great.
so much in sync with my mother, even though at this point my mother had passed, but she was from New York, she had certain colors, it was like great, but they couldn't find us. And this is like going into the characters to play us. I mean, they found us because we were there. so they finally, director said, you you two guys, you have background in this, you gotta play yourselves.
And I'm like, hell no. No, it was too, it was too, it was still too close. Yeah. But we did it. But we did it. So that was for the fringe that we did that. So to say these words that actually happened and to hold, cause sometimes it's better not to like let it all out, but to hold back because sometimes that becomes more real. Like I'm saying, like if you want to cry, it's better it's like,
Dr. Brandy Archie
Too close. Yeah.
Emilia Bourland
It was too raw, too raw still.
Emilia Bourland
Vin & Douglass
Hold back your tears, in acting. That was a tip from Judy Garland, by the way. Thank you, Judy. So we developed it, worked on it more and developed it into a full length play. And we had some readings out here and in New York as well. Yeah, on both coasts. And then we continued working on it then it became a full length play. So it was actually, two acts. you.
Dr. Brandy Archie
Mm.
Emilia Bourland
Thank you, Judy.
Vin & Douglass
And, but then we put that aside because it's like, know, this book, never really finished it. And this was during COVID. So it's like, it's pretty much done. And I designed the whole thing and 95 % of the photos are mine because I was an art director too. So it's like, everything had to be laid out just the way I wanted it to be and stuff. it's like, let's do this book. So it was during COVID and it was like, okay, here's an opportunity to really focus on this and get this laid out and
And the way that we decide, mean, dementia mama drama, it's a daily dose of dementia with mama. And it's like little short, little chapters that are, know, cause a lot of caregivers, a lot of people, you don't have time. And so here's a little snippet you could read and it's, you know, yeah. Yeah. Yeah. Yeah. And I was kind of, that's the way I like to read things too. Cause I'm not a big avid reader. if it's this long war on peace, it's like,
Emilia Bourland
Mm-hmm.
Emilia Bourland
Yeah, it's a very easy, it's a very easy, quick read, read lots of good lessons.
Dr. Brandy Archie
Digestible easily.
Vin & Douglass
girl, ain't reading this. You know, I just, need the short chapter. If that was broken up into like fourth pages per chapter, I probably could do it. But that was, that was the reason why it was done that way. Yeah. Like a daily dose. Here's a little dose, little doses. And then like getting all the positive feedback from it and stuff. It's like, I think we have to take, instead of going back to the play, let's try to bring it into, so that more people can relate to it in a bigger audience and not only dementia.
Dr. Brandy Archie
you
Vin & Douglass
but caregivers and the bottom line being positive. So that's when we started the series. And so we have, we wrote the pitch, the pitch has got to be a little cleaned up, but other than that, we have the whole arc of the way it would go. But for us, for this particular piece, it's going to be more about the couple dealing with the mother than the mother.
Emilia Bourland
Mm-hmm.
Emilia Bourland
Mm-hmm.
Dr. Brandy Archie
Yeah.
Vin & Douglass
not that she's a peripheral character, but it's about two people going through their relationship. mean, we were together for four or five years, whatever, when it started to happen. it's like, you know, it could be make or break for some couples, you know, having to deal with someone's parent. Yeah, because caregivers, that's when a lot of times if they're married or just together,
Dr. Brandy Archie
Yeah.
Emilia Bourland
100%.
Vin & Douglass
It has broken up a lot of people because they couldn't do it. So we were fortunate that it didn't. And then it just made our relationship stronger, I think, really, because we had this purpose and we were, you know, and she was great. She was fun. Yeah. Yeah. She was a great woman. She loved him. Yeah. She would call me a blah, blah, blah, blah. But she like, get Douglas here. So.
Emilia Bourland
Mm-hmm.
Dr. Brandy Archie
Ha ha ha ha!
Emilia Bourland
Ha ha ha!
Emilia Bourland
Well, thanks to you both for being on this episode of Care Lab. You want to share again a little bit, where can people find the book, Dementia Mama Drama? Where can they find the book? Where can they find you? That book right there. Funny, funny, you should have that.
Dr. Brandy Archie
Yeah, thank you.
Vin & Douglass
Let's go longer. Let's go longer. Thank you.
Vin & Douglass
This book? The book is on Amazon. And it's available in a paperback or ebook, which the ebook is in full color and the photographs and things are really beautiful. the more Chris. He did a great job with that. Well, thank you. But yeah, we would recommend the ebook. But it's available on Amazon.
And that's about it.
Emilia Bourland
And where can people find you? Are you on social media or?
Vin & Douglass
you name it. We're on it. Facebook, X, Twitter, whatever threads, Instagram as dementia, as dementia, drama. Yeah. Also, we're actually starting to do blue sky now too, because there's a lot of stuff going on out there with Twitter and yeah. And then, yeah, the numbers like, yeah, but that's a whole nother.
Dr. Brandy Archie
Okay.
Emilia Bourland
Yeah.
Dr. Brandy Archie
A whole nother episode. That's a whole different podcast, exactly.
Emilia Bourland
That's a different podcast, yeah.
Vin & Douglass
I'm in touch with that screen too.
So check out Dementia Mama Drama on any social platform pretty much. Social media platform.
Dr. Brandy Archie
Well, thank you so much from, yeah, thank you so much for being on the show. And if you have been listening all the way to the end, you made it this far, we appreciate you as listeners. Please make sure you like and subscribe so that you can get this content regularly in your feed and also so that other people can find this kind of content. And we look forward to you watching and to you listening to us again next Friday on CareLab. Bye everyone.
Emilia Bourland
right, Brandi, take us home.
Vin & Douglass
Thank you.
Bye.
Do us a favor and subscribe to the CareLab podcast on YouTube, Spotify or Apple Podcasts! It will help others find our conversations and grow the community and you’ll stay updated with the latest insights and expert advice on elder care.
