MARK WILSON: The Care Leader Mindset

Alzheimer’s can take so much, so fast, and the hardest part is feeling like you have zero control. We’re Susie Singer Carter and Don Priess, and we’re joined by Mark Wilson, a former Fortune 500 leadership executive whose new book, Breakthrough Alzheimer's Care, offers a hopeful roadmap that leads to thriving, not just surviving through a dementia journey.

After his mother was diagnosed with both Alzheimer's and vascular dementia, Mark made the life-changing decision to leave a successful corporate career and become her full-time caregiver. What followed was a remarkable journey that challenged expectations and transformed both their lives.

Drawing on leadership principles, practical strategies, and deep personal experience, Mark shares how families can become Care Leaders, not just caregivers, by creating environments that prioritize safety, joy, connection, purpose, and well-being.

We discuss:

• The mindset shift from caregiver to care leader
• The five breakthrough pillars of care
• Building and leading an effective care team
• Creating moments of joy even in the face of dementia
• Supporting your loved one without losing yourself
• Why hope still matters after an Alzheimer's diagnosis
• Finding purpose and meaning throughout the caregiving journey

Whether you're caring for a parent, spouse, partner, or friend, this episode offers practical guidance, heartfelt wisdom, and a powerful reminder that love can still create extraordinary moments.

Because even when there is no cure, there can still be connection, purpose, and joy.

If this conversation helps, subscribe, share it with a friend who’s caregiving, and leave a review so more families searching for Alzheimer’s caregiving support and dementia care strategies can find it.

#LoveConquersAlz, #Alzheimers, #Dementia, #Caregiving, #FamilyCaregiver, #CaregiverSupport, #DementiaCare, #SeniorCare, #CareLeader, #AgingParents, #CaregiverLife, #AlzheimersAwareness, #CaregivingJourney, #ElderCare, #CaregiverWellnes

Connect with Mark:

Website: Bold Care Leader

LinkedIn: LinkedIn Profile

Instagram: @boldcareleader

Facebook: Mark Wilson / Bold Care Leader on Facebook

Book: Breakthrough Alzheimer's Care

If someone you love experienced neglect in a nursing home…Then you know how desperately the system needs to change.  History has shown us that It takes people power to change anything worthwhile. That’s why we we’re launching something that’s never been done before. On September 27, communities across the country are coming together for the first-ever National Long-Term Care Reform Day.This is a peaceful national walk for dignity, accountability, and change in long-term care.We’r

Transcript

Cold Open And Mission

0:00

When the world has got shut down and Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alls, a real and really positive podcast that takes a deep dive into everything Alzheimer's, the good, the bad, and everything in between. And now, here are your hosts, Susie Singer Carter and me, Don Priest. Hello, everybody, it's Susie Singer-Carter. And I'm Don Priest, and this is Love Conquers Alls. Hello, Susan. Hi, Donald. How how goes it? It goes pretty well, you know, except for the fact that it's possible because I had to pick up we had our uh little Yorky Pooh uh groomed this morning. And when after she's groomed, there's there's little white uh remnants that go up and they stay in my nose. Oh hopefully, I won't just start sneezing. It's the dog, uh-huh. It's the dog's fault. Yeah, you know, white remnants in my nose, yes. Yeah, right. Yeah. That's what yeah, poor the dogs get blamed for everything. Everything. All right. Everything's like, hopefully, they won't be sneezing too much today. All right, Chippy. Yeah, so this house things, what's all going on? Um we're still working on the uh organization of the walk, of our Roar Walk for September 27th, and we've actually uh registered uh National Day

Hosts Catch Up And Roar Walk

1:47

to coincide with the walk. How cool is that? It's the National Long-Term Care Reform Day. It's the inaugural one. And hopefully the point, you know, the the goal is to not have to need that day anymore. Absolutely. Let's hope that this walk is the last one. Yeah, you know, the first and last. It's kind of lofty, but whatever. You gotta be lofty, you know, to even think about doing this, right? So we're lofty. Yeah, so Susie's only putting in about 18 hours a day right now. Um, and I keep telling her to stop being so lazy and get on it because uh you know, this is not a game. This is serious. So my God. I literally bought glasses. This I've worked my I'm a workaholic, let's just face it. But I never worked this hard on on doing a a movement, a grassroots movement, which is not my lane. And but you know, I keep thinking about Margaret Mead's uh saying that, you know, anything that's ever been worthwhile, I'm bastardizing it, so I'm killing this. But it basically is that anything that's ever made change started with a small group of passionate people. So, and that's the truth. So I am small and I'm passionate. And somehow you're a group also, just all by yourself. Well, no, because I I I I'm mighty and I've forced people to join me on this. Exactly, whether they want to or not. So it's it's true. So by September we should have about 300 million walkers if you keep going on the page. Yes, please, yes, please, and putting out the word that we are looking for volunteers, we are looking for walk leaders. Walk leaders in all states, even you know, every state, every city. You've gotten how many states now? Have 22 states out of 50 that are almost at the halfway mark. That's pretty damn good. And more than one, uh so we're almost at like I think we have four so 22 states, 38 walk leaders. So that means more than one or two, more than two or three in in a couple of the states. So that's great. Yeah. Yeah. And if you can and by the way, if you if you feel uh, you know, that that organizing a walk or being a walk leader is is too much responsibility, you can f go to our website and find out w where there are already walks, and you can join those walks in your city, right? And then and that's that's not too hard. And um and I s and I just say join us because we need we need the power of the people. Here's another meme for you. The pe the power of the people is greater than the people in power, and that's true. That is true. Yeah, that is true. I got another one for you. What is that? Hang in there, baby. Okay, all right. So if you're not if you're not watching, yeah. If you've if you're if you're older than what, 40, 50? Yeah, I have no idea what I'm talking about. Yeah, because it's basically like that. This was like this was like the meme of like the what it was. It was on posters, it was Yeah, and it was always a cat like on a wall with its eyes going, and it would say hang in there, baby. Yeah. Yeah. Yeah. Yeah. So that's my uh contribution. So I only know about that because you told me about it. I did. I think I I called it up, you know. Uh well, you don't remember anything before the internet started, so that's true, that's true. Yeah, yeah. Anywho, we have a fun guest today who's been very, very, very, very supportive of us, and I like that. I can't help it. Yes, and he's super sweet and super nice and very smart and very uh uh uh um resourceful and and motivated. All the things I like. And he's yeah, yeah, so where do you get along? We do get along, and well you're gonna say, I'm not gonna give anything away, but I am gonna say that I did, I would I had the honor of endorsing his latest book, and that was really lovely. So I I feel I always I like that. It's my second time I've done that, and I feel it makes me feel very proud. So I appreciate that. So, Don, why don't you introduce our terrific guest? I will do that right now. Mark Wilson is a former Fortune 500 leadership executive who spent over 25 years shaping high-performance teams at companies like PepsiCo, Taco Bell, and Yum brands. But everything changed when his mother was diagnosed with Alzheimer's. Faced with a devastating prognosis, he made a life-altering decision to leave his

Meet Mark Wilson And His Book

6:35

corporate career and become her full-time caregiver, determined to defy the odds and give her not just more time but a better quality of life. Blending his leadership expertise with deep personal devotion, he built a care approach that extended his mother's life beyond expectations and transformed his purpose. Today, he's an author, advocate, and advisor with the UCI Mind Center, championing Alzheimer's care, patients' rights, and hope for families everywhere. And today he's here to discuss his new book, Breakthrough Alzheimer's Care, a powerful and practical roadmap for family caregivers who want more than just survival. They want their loved ones to thrive. We are more than delighted to have him here with us today, so let's not wait another moment and say hello to Mark Wilson. Hello, Mark. Hello, Mark. Hi, Susie. I couldn't be more excited about being part of your show today. I I met you a while back, Susie, and have been following you. And I love your new film, No Country for Old People. Best documentary ever. I can't believe it didn't win like multiple Academy Awards. From your mouth. They're so sweet. How much did you pay him to say that to us? No. I appreciate that. I know I know you're true. And you also supported us during it. And you know, you made donations and you've been making you've been supporting our movement roar. So you are you are a man of your word. And we appreciate that. Thank you very much. I'm ready to roar tonight. Today, man of action. Let's roar. I told you, I told you. He is uh very, very entrepreneurial and you know, he he is an A-type. I can see that. I mean, so am I I want to know like the first first of all, yeah, like everything, there's there's the moment like you have this high-powered career as a as a corporate in the corporate world where I that gives me the hives because I've been I only experienced that once in my life, and it was like I remember getting called in for wearing a tank top in in a corporate setting that was entertainment based, and I got called in for a tank top. I'm like, this is not my people. Like, I'm in Los Angeles, and I'm I'm a producer. What's going on? I don't know. It's it is a whole nother culture, am I right? Definitely. It's it's a little bit, but it's definitely different for sure. It's definitely different. So so here you have it, and then then so at what moment did you decide, like what was it that made you go shift from this life to the life of a caregiver with your mom? Like what what what gave you that confidence to just go, I'm done, and that's it? Because that's a huge decision. Well, you know, it was so funny because it was not a hard decision at all. I mean, I I I love my job. I I worked with some great people at Taco Bell and you know was very successful and kind of you know it was kind of moving along in my career. And then my sister, who was close to my mom too, she kind of saying, Well, Mark, there's something wrong with mom. I I can't put my finger on it. I think we should get her tested. There's something wrong with her, maybe it's dementia or whatever. And I was I was classic denial. It's like, no, she's just getting older, she's you know now in her 70s. And anyway, she my sister is pretty assertive, and she said, No, we're gonna get her tested. I said, Okay, good. So let we took her tested at UCI and she had Alzheimer's, and I didn't know anything about Alzheimer's. I knew nothing about it, knew nothing about caregiving. But I pulled the doctor aside and I said, Okay, what's going on here? I don't, you know, how long does she have? And she said, it's so funny. Well, she's not that old, she's in her early 70s, but she has some other comorbidities, and she has two forms of dementia, Alzheimer's and vascular. It's hard to know for sure, but

Leaving Corporate Life For Caregiving

10:22

I would guess, you know, five plus or minus years. And I thought, early 70s? No, no, no, no, that's not gonna work. So I thought, okay, I'm gonna figure out how to help her live a lot longer than that. And then so I worked for about, I don't know, nine, ten months and tried to take care of her at home. Um, at the same time I was working, and it was too hard. I wasn't doing either job very well. And so that just went to my boss and I said, No, I'm sorry. You know, I have to leave to take care of my mom. It's a priority, very important to me. And he said, I mean, you haven't you're not even old enough for early retirement yet. What are you doing? I said, No, this is a priority, so I'm sorry. So bye bye. So I did. And and then it was then I had um she was still early enough where I still had some time to do research. I talked to everybody on the planet. You know, I was used to dealing with executives, I wasn't afraid to calling, you know, big time leaders and dementia and neurologists and reading. And anyway, I figured out obviously there's no cure. I learned that quickly. But like we all do, right? But I learned that there's also a lot of little things that could be done that there's quote unquote some evidence that would help them. And I thought, okay, well, if there's some evidence, why don't I try all these things? And as long as it wasn't hurting her, we shouldn't have bad side effects or whatever, just throw the kitchen sink ideas at my mom, and maybe collectively it'll make a difference. So I that's that was my approach, and I thought, okay, I'm gonna try all these things. And my mom, my mom and I are we're always super close, and so she trusted me and and she let me do all these crazy things and changing her diet, supplements, pro art programs, cognitive program, anyway, all this stuff, and she went along with all of it, and it helped a lot. I mean, she was happy, and she lived a lot longer and healthier than this crazy doctor thought she would. She almost lived three times longer than the five years, and she might have even longer but for a surgical mistake at toward the end. And anyway, I don't know if we want to go there, but basically she would have lived longer but for a medical negligence mistake. So I'm sorry about that. Yeah, it was horrible. Awful. Um I do want to get to that, but let's talk about the other positive parts of what you did because I think that's what's gonna help other people. So if someone is overwhelmed right now and they and because I, like you, never knew anything about Alzheimer's, was like, Mom, we got this. We're gonna we're no one else has cured this, but we are gonna get it. We're getting it, right? And then I was like, woohoo, delusions of grandeur, cuckoo. And then it was like, now how do we actually deal with this, right? And so for those people that are going through that right there, that that moment where they're like, what do I do? Like, what how what can what approach can you give them that that you know that would be like the step number one? Like Yeah. Well, it starts this is it starts with leadership and in a frame of mind. If you're the caregiver, I mean it's easy to sort of be hope because there's no cure, it's easy to feel like you know, it's hopeless, I can't do anything, I'm just like, you know, hang the the cat thing, the hang I'm hanging on barely. But no, you you can do a lot of little things that make a big difference, and you need to be strong, even as hard as it is. I mean, being a caregiver and seeing your loved one slowly decline and become a different person and not the same person is the hardest thing that I've ever done. In fact, I tell people I go, you know, way harder than being an executive working 60, 70 hours a week. That's a piece of cake compared to being a family caregiver or something. Yeah. 24-7, and it's heart-wrenching, but you got to be strong. And so so part of what I learned is is I I kind of drew on my strength as a leadership development executive, and I thought, there's a number of little tools that I've picked up that I would teach people. One is called the mood elevator. So if you're low on the mood elevator, basically you're you're you feel like a victim, you're blaming people, you're that you're not going to be very effective

Care Leader Mindset And Mood Elevator

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for your loved one, and you're not going to be very happy as a caregiver. So you've got to figure out how to stay high on the mood elevator. And this in my book that we that you mentioned, I I talk about a lot of different things. There's kind of internal sources of strength that you draw on. Some people draw on their faith, whatever they're, you know, their God, whatever. Other people draw on their pride in who they are and their love for their loved one. Then there are external sources like support groups, um, therapy. I mean, there's lots of things, exercise, socialization. Exercise, I was gonna say, yeah. Yeah, all those things together, new good nutrition. So there's like internal and external ways that you can draw on their strength. Because you have to be a I I talk about this and I and I believe this, you have to be a care leader. You can't be a caregiver. Because if you're gonna be a care leader, that's how you manage and drive all the things that it's gonna take to to have your loved one be live longer and healthier and happier. If you're just a cat hanging on as a caregiver, nothing nothing great's gonna happen. I mean, your loved one will survive and go through whatever the process is, and but to be a care leader, you could you can make a difference for your loved one. That's kind of the thought. I love that. I was thinking just recently that, you know, when because people ask that question a lot about which we talked about before we would started recording, was that you know, the difference between having someone at home and having them in a facility. And I say that when you do have to put your loved one in a facility, you don't stop being caregiver. You become care coordinator, which is like a leader. You are the leader, and you do you must be the leader. And and because no one else has that job. It is you you are the CEO of that of your loved one. Yeah, right? Totally. Yeah, I I think it's a little easier to do it at home because you have more control. Agreed. You can you can manage the care re you know, care facility, whatever. I mean, I talk about your court, the court team with the direct caregivers, home caregivers that I had to hire to help my mom because after about a year and a half, two years full-time, and my mom's condition getting worse and worse, which that's what happens with Alzheimer's, it was too hard. So I decided to bring some home caregivers in. And being an HR executive, leadership development, I was the pickiest SOB hire ever of caregivers. Yeah. So I I had to be. You have to be. And people were so funny, they're gonna like, oh yeah, yeah, you know, I'd call these an agency and they'd say, we're gonna send somebody over. I said, No, no, you don't send anybody over. I interview them first. Yeah. And and I and I and I knew from the a concept called the pool of talent. If I had six or seven agencies I work with, I'm gonna have a lot better pool of talent than if I just have one agency. So I would draw these candidates, I'd interview them, and I'd find the best couple, couple caregivers,

Building And Managing A Care Team

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and then I'd give them a trial shift. And I knew kind of what I was looking for. I was looking for safety, number one, because if the loved one isn't safe, nothing good happens. And then the second was is I call it the magic part, which is a combination of do they show love, compassion, empathy, do they have fun with my connection, or they do they have fun with her? Does my mom respond well to them? That's the magic part. And they had to have both. And and I was I found the best team of caregivers ever, and they they helped me execute all these great actions that I came up with. And I I couldn't have been happier with these caregivers. In fact, today my sister and I are still friends with all five of them because my mom, the last kind of four, five, six years, needed full-time care. And these these women were around the clock help for us, and they're still friends because we love them and they loved us and they're part of the family. And so that that magic is so important because that that's what helped her live longer and happier and healthier. And it's you know, it's all about you know the right the right players. And and if you're in a facility, you can do that stuff. It's harder, but you might have to be a little bit tough on some of these people. And if you're not happy, pull them out, find another facility. I mean, seriously. So I mean the thing is is that you're what you're saying is so appropriate because it's we're talking about human beings, we're not talking about, you know, a product. And so we're talking about what are what are the important qualities that you need when you're being when you're to live. Like you need it, you need connection, you need um, you know, to be compassionate, you need to be have uh similar some similar similarities. You know, there is people that my mom didn't get along with either, and other people she just adored. Well, that that that is human and that needs to be taken into consideration. Because what I mean we have to put we have to be empathetic and put ourselves in those positions. Like as a mother, I always did that. I tried to get inside my three-year-old's head and go, why is that doll so important? And you have to think about like what's important for other people, you know, and and and you know, try to deliver that as best as you can. I know how hard it is because I did also hired people to help us when my mom was living with me. I had and I didn't do what you did. I should have had your book because I called one agency that and I they sent somebody over and she quit in the middle of the shift. I'm like, where are you going? She goes, Oh, your mom's too hard, I gotta go. Like, what? And this was this was an all-time, this was they were there that this was her specialty, Alzheimer's, you know. Uh yeah. And it just it's too hard. It's too hard. It's too hard. Okay. Now, a lot of people, you know, yeah, I mean it's it's dip because some people aren't in a position to to be able to afford full-time care. Uh you know, what what steps can you take? Let's say you're not you don't have that ability at home, let where where are you at on that as far as okay, what can you do as an individual without, you know, when you're when it's just sometimes it's just one person. They don't have family, friends, anyone who's who's in that position to help. Any guidelines there? Well, I I I think that's a good question. I mean, if you're if you're the sole caregiver without any help or or and you have them at home, basically it's that you gotta be strong too, to be a strong care leader, and then just do the best you can to implement these actions that I've identified as you know really key for longevity and health. And it's hard. I mean, you gotta give yourself I I mean, I talk about the five breakthrough pillars of care. The first one is self-care, because if you're not taking care of yourself, you're not getting a little bit of rest here and there, you're not gonna be very good for them or for you. So that's the hard that's the hard thing about being the individual individual sole caregiver for your loved one because Alzheimer's and dementia gets slowly, progressively worse, and it gets harder and harder. So I know there are people that do that, but I give them so much credit. It's like I don't know how I mean I tried for two years and I that was it. I couldn't do it anymore. I wasn't getting enough sleep, I wasn't being a good caregiver, I wasn't being able to implement all these creative ideas I had because I was just wiped out. It's too hard. Yeah. Um so yeah, uh and that is hard. I don't even know what the answer is for that. And I I think that that therein lies the reason why we need a better system that supports people that that can't afford to have you know, to be actually support another caregiver. That's the that is an issue, but that's for another day. Um so when what so what what give us the five pillars of the breakthrough approach. Sure, yeah. The f first pillar is self-care. It's it's it's you have to be self-energized and and my the have the right mindset of a care leader and be strong and healthy. That's number one. Second the second one is safety. Because if your loved one isn't safe, they're not gonna live longer, they're not gonna be happy because they're gonna get hurt. And so safety is number two. And uh you know, I talk a lot about how do you create a safe environment for your loved one? Um in a facility, I I provide checklists about what do you look for if you're in a loved one's a facility. And if in your home, what do you how do you change your home? And it's not hard. There's like some just a few things you can do to create a much safer environment at home or watch for and make sure your facility has them. I mean, they're little they're things like you know, just make sure that the flooring is not super hard hard flooring, because if your loved one falls, which is there's a good chance they will, if it's a tile or hard floor in your facility or at home, they're gonna hurt themselves. So, for example, I had these uh I sort of borrowed a

The Five Breakthrough Pillars

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lot of ideas from kids because if if you you watch these like there are these like play tiles that you can get for kids that yeah, I know what you're talking about. Yeah, it's gonna rubberized. So if my mom fell, she never did because her caregivers were on top of her, but if she did, she'd be okay. And and then in her bedroom there was a rug, so that was okay. So little things like that, have her some rails that help, you know, this and there's a lot of little things like that. So safety is number two. Number three is is is lead, have the finest care team ever. And this is this is really leveraging a lot of my experience in HR and leadership. How do you how do you find them? How do you interview them? How do you assess them once they're in your house for a trial shift? How do you coach them? I mean, you're you're not the expert on care, but I talk about a coaching model that helps make good caregivers great caregivers, and how do you make how do you coach doctors, which believe me, doctors do not like to be coached, but you can coach them. And you have to and you have to lead doctors. I call that I call doctors part of the extended care team. Your your direct caregivers are your core care team, and your extended care team includes doctors. I had physical therapists come to the house, I had a speech therapist, you know, kind of other people that are involved in your loved ones' care. And that's your extended team. You have to coach and manage and lead those people too. Much harder to lead than a direct caregiver, but that's them that's pillar number three. Pillar number four is a combination of nutrition and supplements and medications. It's kind of the those all those things, and I list all the different supplements. Um and doc talking about doctors don't like supplements, but I found that I had a list of about a dozen different supplements that there was a little bit of evidence that they helped with with dementia, or there's a strong link between your physical health and your and your brain. So they're either helping your physical health, which helps your brain, or vice versa. But how much each one contributed to my mom's you know longevity and health and happiness, who knows? It doesn't matter. It didn't matter to me. It was like a lot of little things added up. I don't know what caused it. It couldn't hurt. It's it couldn't hurt. Yeah, and I just little bits of things to see how she would do, and if she didn't react badly, I would just you know give it to her. So so I think that's that's you know, that's number four. And then the fifth, the fifth pillar is it's an interesting one. It's called it's a combination of creating the the a really loving, supportive, fun, physical environment and people environment. And so that's the fifth one, which is an interesting thing. I learned that I learned the concept from I was um one of my projects I had at Taco Bell. I worked with the head of marketing, and we had 17, yeah, 17 restaurants in Tucson, Arizona that were like our play restaurants. It was like a pilot project, and we could do anything we wanted with these 17 restaurants. And so so we did we did all kinds of crazy stuff. We we changed the physical environment. I changed, I taught them how to do improv because I thought that would be a lot better than you know a rote script, you know, to be able to kind of improv with customers. Anyway, so one of the things I learned, I brought in a consultant to help me, he he called, he called, talked about touch points. And so the idea was when you walk into a restaurant or retail environment, your customer sees things, hears things, feels things from every moment through the process, even when they leave, there's there's feelings. And so I kind of borrowed that idea and I thought, okay, how do I help my mom's environment both

Touch Points That Create Joy

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be fun and and loving and caring and safe? And so each each moment of a day, a week, a month is a touch point. And so I so I figured out my mom was a kindergarten teacher, she loved fun kid things, and so we would we would create her room with stuffed animals and fun things, and and she would love it. And when we'd go out, I would decorate her wheelchair and her walker with stuffed animals and paintings and fun things, and it was great because we'd go out, I'd take her out for I call it an adventure. Every single day we'd take her out. Uh one of the caregivers and myself or my sister, we'd go out and we'd her walker would be decorated to the hilt or a wheelchair, and kids would come around her. Kids would come around her and say, Oh, look at that! Look, mom looks so cool. Can I touch it? Yeah, and she would just my mom lost her speech early on. It's one of her first signs, but you could see her face just smile and love seeing these kids. We're so excited about what was on her wheelchair. Oh, it's so cute. You're so cute. And my mom would like do coloring pictures and stuff. And and I like you do with kids, we would then put it around her room and put them up. And you could just, we were just so proud of her, and you could see that she loved seeing them because that means that family's proud of what I was doing. So that's the examples of the physical environment, and then the people environment is don't let anybody have any any touch point face-to-face time with your mom that isn't fun, positive, caring, empathetic, loving, and basically fire anybody or don't give them access if they're not supporting that people environment, too. So that's number five. And I think that lends itself to happiness. And we know that if people are happy, they're probably gonna live longer. There's a connection between happiness and health. Gives them a purpose. Yeah, it gives them a purpose to live. Exactly. Going back to number number three a little bit, and this is kind of is with your extended care team or your care team or anyone who deals with your is how important is it for you to let them know who she is, what you know, what who she is as a human being, what were you know what she did, what she loves, all those things. So they connect with her on a human level, and that includes doctors, sure, and you know, any care provider. Did you did you find that was something that you tried to do and and do you see the value in that? Definitely. Well, but I wouldn't I didn't I didn't really cue them to those things in the interview process because one of the things I learned about interviewing is uh what questions that they ask is very important to how they think about things. So I wouldn't tell them much about my mom on the front end because I wanted them to ask questions about her, and and so they if they're in cure if they weren't asking questions or anyway, so that then I wouldn't even hire them. So if they are if they're curious about my mom and who they she what she is and what she likes or doesn't like, that's a good sign. But yeah, I would share. I mean, the caregivers got to know her so well. I mean, I could share with them. They they knew more about my mom than I did in some ways, because they were intimate with her. And that that was the other thing when my my focus was I wanted the caregivers to make this beautiful connection with my mom. And so my sister and I were more like support. We were watching and coaching and leading, but we also were doing, you know, doing the housework, doing the cooking, because we wanted that we wanted the caregivers to be face to face, connecting with my mom and not worry about cleaning things up or cooking. That was that was our role as support leader to do that kind of stuff. So they knew her they knew my mom super well, and that was part of the magic that they were could focus on that, um, focus on her safety. Like when she'd have lunch, I would make lunch, but they would sit down and and s eat with her and make sure she was safe eating, because you know, dementia patients sometimes have trouble swallowing and you know that kind of stuff. So so that's yeah, so that that whole piece is so important. The the care leadership part, hiring, coaching, and then knowing when to fire them. And in my book, I have I have four. How when do you immediately fire a caregiver if they do any of these four things? Like, don't even uh don't even let them finish their shift, just send them home. One was I had I had an overnight shift where a caregiver fell asleep, and my mom, the only time she ever fell was she she fell getting out of bed because his caregiver was asleep. And so I I had a little camera that I would try for overnight shifts if I didn't know somebody, like their first shift. And sure enough, this this lady fell asleep, and she was so funny. She made up some story. She says, Well, you know, I mean, your mom was going so fast down the bed that I didn't catch her, and that's why she fell. I said, That can't be right. Come on if you're watching. So I I played the camera, you know, and I said, No, no, no, no. She you are asleep. Get out of here. And there's a couple other couple other things, like they're always on their phone, you know, and they're not paying attention to your loved one. Right. Get them out of there. So things like that. Definitely, definitely, yeah. Definitely. So it when you okay, so the book is is part memoir. Yes. Right? And then part ha a guide. Yep. So what what is the main thing that you want people to feel after they read your book? That's a great question. Because it's so funny when people ask me why did you write the book? And I I wrote the book because I wanted to give people hope and a plan and to feel like there's hope. Because it's very easy with Alzheimer's because there's no cure, and it's the hardest thing to ever do and experience to feel like overwhelmed and not hopeful. And and and when you do when you feel that way, then you act that way, and you don't really do what you can do to help your loved one or yourself. So my my goal in writing the book was to give people hope and a positivity around, okay, I can do things, I can make a difference, and it's not hopeless, you know. And if you help your loved one live happier and longer, that's pretty good. I mean, there is no cure, but you know, three times longer than they thought, which was my mom's situation, is pretty doggone good. And having having a lot of happiness, I mean she was happy, that's also good too. So if you guys can, you know, the reader can kind of benefit from that or try to follow the plan and do the best they can and have a the mindset of a leader and the mindset of hopeful, then I've then

Hope, Mindset Shifts, And Holy Moments

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I've accomplished my goal in writing the book. I love it. It's like what I did with my mom and the girl. I wanted people to see that when you find when you lean into where they're at and you, you know, approach that this disease uh as a worthy opponent and you understand it that you c you can have happiness. More uh it really do and it is happy. And you find it it's like so uh life-altering when you do surrender to it, don't you think? Yes. Oh yeah, big time. And it I see that I lead several support groups now for the Alzheimer's Association. These people come in there crying, they don't know what to do, and it's it's like no, you can make a difference, and you can do some things to help yourself and help your loved one. Not e it's not easy, you know. I don't want to make it sound like it's not easy, but it's different. It's just a different shift of how you look at your mom. Like, you know, I always say there was a day, there was a moment where I became mom. And that was and I, if you asked me that five years before that, I would have been like devastated. But when it happened, I was like so proud and and moved by that moment because I knew that she was safe with me. Exactly. Yeah, I talk in the book I talk about four mindset shifts, and you're talking about really a mindset shift. I mean, one mindset shift would be like victim, you know, too empowered. I mean, so you don't want to be a victim, even though it's easy to, oh, how could this happen to me? How could this happen to my loved one? You know, my life has changed, you know, I'm being robbed of you know my life now, whatever it is. But you don't think of your think of it, okay. I can make a difference, I can be empowered, I can help them. So there's different mindsets that you have to kind of slowly sort of get around get your head around for both for your own benefit and for your loved one. So and isn't that the way it is in life anyway? And and aren't we all terminal? So at the end of the day, so it it you know, um one of one of the colleagues that uh who is uh an attorney that we interviewed said for our documentary said, you know, a person who is in their 80s, the you know, six months to someone in their eighties is is like you know, five years to someone in their forties. So time is is just relevant, irrelevant relative rather, it's relative to your to the age that you are, and so making somebody's life better for five months for a year for three years, three years longer than you know, that's incredible. That's what it's all about because we're not promised anything, we're not guaranteed anything. No, and I would argue that that quality is definitely more important than quantity, definitely. One gr one great year is way better than five really terrible years. Absolutely. You know, so that's totally you're totally right. And I I I talk about in the book, I mean, I I don't want to get spiritual, but I call about there's a there's a uh Catholic theologian named Matthew Kelly who writes about holy moments. And when you see your loved one have a moment of joy, they're smiling, they're just you could just tell that they're happy. It's a special, joyful moment. And it and as the love, you know, as your caregiver family loved one, I can't even tell you how special those moments are, but I could see my mom beam with smiles and laughing, and it's like it's worth it, then it's a whole lot of things. Yeah, well Yeah, my brother, you're like a brother, because that's exactly how I would feel about my mom. I would get so happy when she was happy. Yeah, and I I knew when she was happy, and her big old fat grin that she had, that big, big, big giant grin, and you know, and and like the day that she said I love you out of nowhere when she hadn't been talking for months. And I was like, What just happened? Like you just ran a marathon. Like, how did you do that? Yeah, you know, and I was like, those are the those are the moments that like that was the gift she gave me. Like, I'll never forget that ever. That's the right word. It is a gift, it's a gift that you've figured out how to get for yourself and for them because you made it happen. You figured out how to create a moments that help her in that space become happy and joyful. Yeah. Yeah, no, it's special for sure. It is special, and I think that what what you're doing by writing the book and by being transparent and and making that shift of perspective, you know, your perspective, which is really important. We have to do that constantly in life. Constantly. No, I know, it's you know, yeah. When I decided, right, it was so funny. I did a couple podcasts for UCI who I'm connected with because I was talking to the director about my mom and and some of the things that I've done. What is UCI so that the audience knows? Well, University of California at Irvine, they have an Alzheimer's Center called Um anyway, it's yeah, anyway, it's a fantastic place. But anyway, I knew the people there and they said, Well, we have a podcast series called Spotlight on Care. Why don't you do share some of your ideas? This is right after my mom passed. And I thought, I've never done a podcast, why not try it? And so people came out of the woodwork and they said, You've got some amazing ideas and perspectives, Mark. Why don't you write a book for people? And I thought, write a book? I don't know how to write a book, but the next day I like took some notes and some more notes, and like, you know, eight months later I had a draft of a book. Who knows? But it was like it came very it came very natural and it came very inspired. I mean, I I while I was writing, I thought, this is really gonna help people because I worked hard and I learned a lot of things I want to share. Was it therapeutic for you? Sorry? It was very therapeutic, actually good. I'm glad you asked that question. I it felt therapeutic for me, and it also felt

Men In Caregiving And Sharing The Story

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like um a little bit of a celebration of my mom because she's a lot of places in the book, and I talk about my grandmother who was also very inspirational for me and very motivational. And so, yeah, it would it was therapeutic and celebratory at the same time, so and helping people, I hope. So absolutely, absolutely. It's the way I feel about you know my mom and the girl, which was very much it was a sele a celebratory kind of story of of you know of embracing what what's in front of you and and really finding the joy in it and seeing the what the gifts that are still there, which there are many along the way. And so if you don't look, you miss them because they can be fleeting and and but they're gold. They're gold. Oh, totally, totally. And so I really appreciate you, and I also appreciate it, you know, not to be uh a female chauvinist, but it comes from I think it's important that we hear from male voices, and because you know, uh there are a lot of male uh caregivers, care uh CEOs, leaders like you, who don't don't talk about it as much as women do, and and you know, I think it's great to have that perspective, you know, that you're providing, and I I love it, so I will support it a lot. And I think that you're a very tender uh version of uh of the of the male species, and I I appreciate that too. I thought I find that very endearing. Thank you. Thank you so much. Yeah, no, it was it was my mission taking care of my mom, and and I figured, okay, I learned some things, I'm gonna share them. But my support groups, there are there are male caregivers that are taking care of their wife. For the most part, it's their it's their wife, and it's it's hard. I mean, you know, my you Susan, you took care of your mom. I think Don is I heard that you it's your mom, right? Yeah, yeah, my mom is in she's in in the process right now. I mean, she's she's got uh Parkinson's dementia. Uh she's been in rehab for since September, and you know, so it's yeah, I'm in the process along with my brother and sister. Yeah, I have noticed in my support group that's a little different dynamic taking care of your mother or father than it is your wife or your husband. Agreed. Agreed. It's I mean I see these people in the support groups, they're males that are taking care of their wife or vice versa. It's hard because I mean the marriage is totally different. I mean so Oh, I know, I know. Like we have uh one of one of our um interviewees who we the other person that I wrote the the uh endorsement in his book, which is Tony Cope Tony Copeland Parker, who was went through his whole journey with his with his wife, and again, like such a great um role model for other men, and especially in in that in a marital uh relationship, because that that is different. And I I find and I say I know that is adds a whole nother level of stress and and loss and loss. So I think that you say that very well. And um thank you for thank you for writing this book. Thank you. Thank you for being such a lovely human being, such a caring human being, and a knight and just fun. Thank you. Oh no, it's true. I mean, I can't, I'm not, I'm not lying, folks. This is a this is a this is what you call a mensch. You know, I think I told you this. You know, my mom, we were Catholic, but my mom taught 18 years at a at a Jewish preschool, kindergarten. Oh, she did? Go with us. She she was loved there. It's how funny the rabbi was like treated her like gold. Because she the first couple years she was there, she did during the holiday, you know, she would like sneak in some you know, Christian stuff. And and the the parents were like, what is that doing there? We're you know, we're Jewish. And but he said, Oh, the rabbi was like, no, no, if she wants to do that, it's okay. She knew Loves or Elaine. Lazar Elaine. She gets a pass. She gets a pass. He knew that he knew that she taught she taught the kids so well they loved her, so like she she gave her some uh some passes on that. We're all from the same God, that's my opinion, anyway. Right? Yes, definitely. We're all from the same God. So, you know, I just say it's different cultures. That's what I say, you know. Listen, my first my first boss was a was an African-American showrunner, you know. I was the only female and the only white girl and the only Jew on in the on the team, and he spoke more Yiddish than I ever knew in my life. Eric Van Lowe, if you're ever listening, like he spoke. I was like, are you sure you're not Jewish? What goes on here? Like he was just like, he cracked me up. So, anyway, I I adore you. I thank you so much for what you're doing. Go get this book, everybody, because it does come from a different perspective and it is uh practical. It's a practical guide. And I and I subscribe to it because I subscribe to finding the joy. What's the point of not doing that? There is no point. No, totally. And it's and what taking care of our loved ones is so important, which is why I love your roar. I mean, I feel like roaring every day when I go to these meetings, and I I I advocate in DC, going back to DC to present to Congress to get funding for Alzheimer's research, and all these things are just like I feel like roaring, you know, and and and you were you guys, your your cause is so so important. It's such a such an important thing because our loved ones need help. And with you know, the elderly people need help, and we have to figure out how to do it personally, we have to think figure out how to do it politically and system-wise, and it's the right thing to do. It's it's it's what okay, see if I get it. It's a mitzvah. Bam! Bam. There you go. It's a mitzvah. It is a mitzvah. It is a mitzvah. Yeah, check check my my uh website. Just it just came up, my website like literally three days ago, because I've you know, I'm a little too old to be social media guru, but I've but I've hired some teenagers to help me with my website, with my social media, but boldcare leader.com, check it out. You'll see my book, a little bit more about me, and and oh yeah. We're gonna have it in the show notes. Don't even worry about it. It'll be in the show notes. Absolutely. And um, yeah, so you know, you are you are the you are the emblematic uh uh guest for our show. You are you are emblematic for it, right, Don? Thank you. Absolutely. You know, we were it's emblematic, and because you know, we're basically all about love. It's important. Love conquers alls. Do you know why? Do you know why? And that is because love is powerful. Yes. Love is contagious, and love conquers alls. We thank everybody for watching, listening. Totally. If you do like what you what you see and hear, please subscribe, share, tell people all about it. There was one other question, though, that I it was maybe more important than anything we've covered, and I have to ask you this right now. Sure, Don. Why doesn't Taco Bell bring back the Encherita? That's all I have to say.

Where To Find Mark Online

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Well, I still it's been a while since I've been there, but I still know people that I'll make a call and see if I can get that back for you. Please do. I'll make a call. Can I say he's serious? Thank you. He's serious. Everybody has their favorite, everybody has their favorite product. Mine was a double-decker taco. So everybody has a little bit of everybody. Yeah, I'll check on the Enchorino. I'll give him a call tomorrow. All right, everybody. I mean, so yeah, so keep up, we'll keep you keep up, we'll let you know about the Enchorido in the meantime. We'll keep you posted on that. And we'll also keep you posted on the Roar walk. And you can go to Roar4, the number 4LTC.org, to find out more information. Join us if you can't walk. You can help call, you can email, you can just talk to people in the market, let them know what's going on. Donate, donate. We need funds. We need funds, we gotta get t-shirts, we gotta get drinks, we gotta get the you know, we're not paying ourselves, but we want to represent, right? We that's the whole point is awareness, and that's what we're trying to do because again, the power of the people is greater than the people in power. No, remember that. We can do this. Love you all, and we'll see you and and talk to you next time. Bye bye. Take care, everybody. Bye bye. Roar. Roar