A Career in Human Resources, A Calling in Caregiving

"Look for the glimmers in caregiving." - Mark Wilson

Hosts JJ  and Natalie sit down with Mark Wilson, a former corporate executive who left his successful career to become a full-time caregiver after his mother’s Alzheimer’s diagnosis.

🔹 Mark’s Caregiving Journey – The emotional transition from executive to caregiver
🔹 Building a Support System – How to create a strong caregiving team
🔹 Lessons in Love & Connection – The power of family support and resilience
🔹 Solo Caregiver Advice – Practical strategies for those navigating caregiving alone

Mark shares his personal experiences, from the challenges of balancing career and caregiving to the joys found in daily interactions. After his mother's passing, he became a passionate advocate for Alzheimer’s awareness and patient rights, offering hope and guidance for caregivers.

About Mark Wilson:

Mark spent more than 20 years in corporate roles leading training, recognition and rewards programs, leadership and executive development with companies like PepsiCo, Taco Bell and yum brand. 

 After his mom, Lena, was diagnosed with Alzheimer’s he left  his career to take care of her time at home. 

When his mom received the diagnosis, they were told she had roughly five more years. That was an aha moment where he decided he going to do everything to prove them wrong - she was meant to live a lot longer!

Love, learning, leadership, and getting results is makes “secret sauce” and he’s sharing the recipe today!

Connect with Mark:: 

LinkedIn: www.linkedin.com/in/mark-wilson-

Chapters

00:00 Introduction to Caregiving Confessions

02:51 Mark's Journey into Caregiving

06:10 Family Influence and Support in Caregiving

08:56 Transition from Corporate to Caregiving

12:08 The Diagnosis and Initial Response

15:01 Building a Caregiving Team

17:50 Creating a Positive Caregiving Environment

21:10 Lessons Learned and Best Practices

24:05 The Importance of Caregiver Relationships

28:22 The Joy of Caregiving and Connection

30:28 Finding Blessings in Caregiving

32:51 Navigating Personal Relationships

35:53 Life After Loss: Advocacy and Purpose

39:44 Empowering Caregivers: Resources and Support

48:56 Advice for Solo Caregivers

51:50 Guilty Pleasures and Personal Joys

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#Alzheimers #Caregiving #DementiaAwareness #CaregiverSupport #ConfessionsOfAReluctantCaregiver

Transcript

0:00

Hey guys, it's your favorite sisters with the confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate, be inspired, leave with helpful tips and resources, and of course, laugh. Now, let's jump right in to today's guest confession. Hey, J. Well, hello, Natalie. How are you doing? Oh no, the same. He's I haven't sung today. I know, but I'm again just gonna share with people that we're in the same room again. I know. I really like podcasting in the same studio. Doesn't it feel good? I wish that our guest was here with us today, but it's okay. He's a couple hours behind us. Yeah, I mean, it would be really early if he flung in. Yeah, it would be early. in California. Oh, he is in California, which makes it really cool. We, I love the fact that we have... another male caregiver on the show. As we say, it's a boy. It's a boy. And so we're really excited because there's so many stereotypes. I know I've said this a couple of times. There's so many stereotypes that it's a female responsibility. And the reality is, is we're all humans and caregiving doesn't discriminate, doesn't mind about socioeconomic, doesn't mind about your race, doesn't mind about your gender. No. Like everybody will need care. Everybody needs care. And there's a very good possibility you will provide it. That's exactly right. And for most people, they don't even know they provided it. That's true. Because they don't realize, they think, well, I'm just being a good daughter. I'm a good spouse. I'm a good child even, because we have caregiving youth. But I am so excited to talk about Mark, because he is really unique. He's really cool, actually. I know, all right? OK, so you should tell everybody about Mark. I'm going to tell everybody about Mark. It's my job. Okay, we are incredibly excited to introduce Mark Wilson today. Now, Mark was born in Brooklyn, New York, and he was raised in Pomona, California. Mark spent more than 20 years in corporate America. That's right. I feel like he's me. I feel like he is only us. I'm like, I escaped. He was in roles. He led training, recognition and rewards programs, leadership and executive development with companies like this is kind of cool. PepsiCo, Taco Bell, and the Yum brands. I think they do those suckers. I love Yum. I know. After his mom, Lena, was diagnosed with Alzheimer's, he left his career so could go home and take care of her. He left the corporate world. We're going to get into that. I know. When his mom received the diagnosis, she was told that she had about five years to live. And Mark said, uh-uh. There was an aha moment. I'm going to do this differently. He pretty much said, she's going to live longer, and I'm going to make it happen. Mark's love for learning, his leadership skills. He says he's developed the secret sauce and he's gonna share the recipe with It seems appropriate that he developed a secret sauce and he worked for Taco Bell. know. Mark, we are so excited to have you thank you for being here. I got my little golf Thank you so much. I love your, you guys are fantastic. I've listened to many of your podcasts. You're fantastic. I love you guys. And I just, I know you have adopted a lot of sisters. I've heard a lot of them. I'm hoping you might adopt this brother here. consider it done. You know, honestly, we're all brothers and sisters in care. And so just know, and we don't have any brothers. Yeah. So and even the dogs were girls. Yeah, even the dogs were girls growing up. So we are poor dad is that that's the next podcast, our poor dad. So, you know, Mark, we always like to get like a good feel of in the past because, know, What we do today is typically a result of our past experiences. And if people don't realize that, you've got to really be mindful of what happened in your past and how that looks and how that will show up in your life today. why don't you share about, us, know, give us, us about childhood and growing up and work your way up to care. Sure, definitely. Well, I'll give you, I'll even go further back than my childhood. I think my drive for care, what came from my, you know, grandparents and their ancestors. My grandparent, my grandfather came from Sicily to New York when he was 12 years old and by himself because things were bad in Sicily at that time in the early 1900s. And to help his family, he came over here with no idea what he was going to do and just made it happen. And you talk about a true immigrant story. Yeah. And I spoke for when I was taking care of my mom, things were stressful. I would also I would reflect on that. I say, God, if he came over here 12 for his family, there's no reason I can't do this. Wow. I can't. So I drew on that. But growing up, my my parents were teachers. My dad was a music teacher. My mom was a kindergarten teacher. And they always valued education. so my mom would work. My dad always worked like two jobs, three jobs. My mom worked two jobs, but yet she always had time for me. She would drill me on my vocabulary, spelling, I mean somehow, and she never acted like she resented helping me, given how busy she was. She was just amazing, and really creative and fun and supportive. And so I grew up with that love, and I think that helped me quite a bit. So. Well, and you not only had your So are you an only child? No, have a sister. She's a little bit younger than me a few years. Okay, so you're the oldest. We were, you know, kind of typical sort of semi-closed for a long time and then when we kind of hunkered down and take care of my mom at home, we got a lot closer. Okay, so that's a positive thing because a lot of people get a lot farther. And that is, you know that happens because the stress of caregiving can take on you. But the one thing, the first sentence which I loved when in your bio was, I was born in Brooklyn. whole family, including my grandparents, my great aunt and uncle, and my great grandfather, all moved to the same block in Pomona, California when I was six years old. And so you are surrounded by family, and you're surrounded by tradition. that's way I look at it. You had a multi-generational kind of childhood as opposed to just being a lot of kids. now with technology and the way people move away from family. Like we grew up and we grew up with our 11 cousins on one side and we were the oldest of the cousins on our dad's side. But we grew up with family and that's how we learned to have interact and how our relationships were. So as childhood, let me ask you this, since you were around older individuals, I'm assuming that your mom and dad helped care. Like there was care that, that was reciprocal that going back and forth between your grandparents and your great, great folks. Oh, completely. Yeah. No, it was all family unity. We were all within, you know, a few hundred yards of each other or homes. And so we would all help each other. And it was, you know, my grandmother would, would drop, you know, when my mom was working, couldn't drive me to school. My grandmother would drive me to school. Um, yeah, it was just, yeah, it was all a big team and we all helped each other and, I used to love riding my little bicycle down to my grandma's house and we'd hang out with, she lived with her brother-in-law and sister-in-law and it was just, it was a whole big thing and family's Sicilian dinners every Sunday. The neighbors would somehow make their way over for lunch, like it happened to be in the neighborhood. And of course they're always invited in. Right. You had me in Italy is all I'm going to say. You had me at Italian lunch. I'm thinking yum. It reminds me of Dorian. You know what mean? So you grew up and so I love that you said I sent my parents away for college as they moved to Newport Beach, California because your dad got a job and while you went to school. So you went to college so you grew up. You live in this childhood and you're having this and you go to college and I love that you see your parents away. Instead of you leaving, they left. You're like, all right, guys, it's time for you to leave. I'm going to college. So life kept going then. so tell me more about, keep walking through life. You changed careers. Well, I thought I was going to go to law school. And I went to law school for a year and a half. I did fine academically. But I looked around and people were enjoying and having passion about the work. And I just like, I'm just not having fun here. So anyway, I took a leave of absence. I worked for Nordstrom for a year and a half selling clothes and I to everybody who came in there, what do do for a living? How do you do that? Anyway, both my parents as teachers, I didn't really know about corporate world. Anyway, found out that you could work for a company and have interesting jobs. I didn't know what I was gonna do exactly, but my first class I was turned on by this professor who taught human resources. And it was like, can you make a living doing human resources? I didn't even know what it was. Make a living, I love that. You said, yeah, you can. Anyway, so I kind of tracked that way. And after I graduated with a master's degree in management, I was hired out at a school for a medical device company as a human resources generalist. then kind of slowly tracked and the part that I loved the best was leadership development, organization effectiveness, strategy, coaching, and all that part, as opposed to the transactional HR stuff I did for a few years in the beginning. And so that's kind of then I tracked and You know, got promoted in different companies and kind of grew from there with my career. sound very organized. I like that. He's very humble because you actually, sounded to me like in your career, you moved up the corporate ladder. You didn't work at like teeny little places and you did big stuff. And so I always like to joke like as I've gotten older, I'm like, you were like a big kid. I get up into a position where I'm on an executive role and I'm like... How did I get here? Because you think of yourself as still young and there's not a lot of people above you at one point. no, it's funny because I was very fortunate. I got sort of the right place at the right time. And I could have moved faster because I an opportunity to move to different parts of the country and get promoted quicker. And it was like, no, no. I'm happy here in Southern California. My family's here. I'm not moving, you know, 3,000 miles away. So it took me a while to kind of grow in the corporate ladder, but you know, slow and steady work. So yeah, I know. Now, and so let me ask you this, because this is something I'm thinking back to other guests. So did you continue having Sunday dinner kind of thing? so is family still a big part of your life? Because a lot of people, when they turn 18, go to college and go off into adulthood. It's not that you're not connected to your family, but some folks remain a lot closer to those family traditions than others. Well, we did for sure for a long, time. And then slowly the family got a little smaller. natural. My grandmother passed away in 2005, who was, we were so close, my grandmother and I. tell you, for another podcast, all the things I did to help her and she helped me. But that's, yes, it was remarkable. Anyway, so as the family kind of got smaller, some of those traditions sort of went away. And now it's just my sister and I, I never had the privilege of being married and my sister isn't either. So, and we now live in my mom's home and so together and we get along great. And I twist her arm sometimes. She's a great Italian cook. So, but I got to, I got to motivate her a little bit to cook and talk for me. I respect that. I respect. Now, did your, did your dad pass first? Yeah, he died very young. Actually he died at 56 from a cancer, brain, brain cancer. And so, yeah, was just my sister and I, my mom, and then my grandmother up until 2005, kind of little unit together. And I have cousins in New York still, and aunt and uncle, you know, then. But yeah, yeah, so was just kind of a few people, and we were hunkered down together. So you're working, you're living in Southern California, and it seems like, I've imagined that life, is good. You you're enjoying things. Tell me a little bit about what builds up to this caregiving. I know that, and we've shared that your mom was diagnosed with Alzheimer's, but tell me about how that occurred. The evolution of it. evolution Was it a slow burn or was it a kind of a surprise? Did you guys see it coming? Well, I lived like a few blocks away from my mom and my sister in the same house. And so my sister kept telling me, something's not right about mom. And I was there a lot. I came over there a lot, but I didn't live there. so said, you know, Marina is her name. said, Marina, she's just getting older. She was at that point, like mid seventies, I think, seventy five, seventy four, seventy five. And so I thought, don't worry about it. She's fine. And she said, no, no, no. I'm like, you know, kind of a little bit laissez faire. And she's one of these, know. She's a little more structured. yeah. Yeah. We're different enough, but also the same enough. Anyway, she goes, no, no, we got to get her diagnosed. I OK, all right. we took her to UC Irvine's Alzheimer's Center. And sure enough, they said that she had Alzheimer's, had vascular dementia, and that's where we got this diagnosis about five more years, because she had a couple other little minor comorbidities. And this neurologist was like a world's expert. because she wrote books on it, UCI has a great Alzheimer's neurology center, one of the best in the country. And I thought, OK, I better kick it up here a little bit. If she's telling me five years, she's 74, that's not working for me. And so that was, that was like, you know, like big aha moment, you know, and I said, okay, I got to figure this out because I'm not, not letting this happen. Five years is nothing. And so she ended up long story short, she ended up living 13 years after that diagnosis. And I think part of it had to do with all the things that I've learned and figured out. I knew nothing about Alzheimer's and I figured out all these things to help her live longer. the other goal was happier. It's like, cause I, you know, people tell it's miserable. No, no, no, no. She helped me be happy my whole life. I'm gonna help her be happy and live longer both. So that was the mission. And I communicated that to everybody who was part of team mom core team and team mom extended team. It was like a core team of caregivers and an extended team where doctors, physical therapists, speech therapists, all the people that came in the home to help take care of her. Before we go into this, because we're gonna get into the details, because I know everybody's gonna be like, I wanna know. how we can have a happier experience because everybody thinks Alzheimer's and dementia and they think my world has completely ended and they think pain and they think awful and it is this dreaded thing and we need to, I wanna hear some hope and some strategies that you applied to say this is, here is the secret sauce. We'll be right back. All right, everybody, we are back here with Mark Wilson. And his mom has gotten her Alzheimer's, her diagnosis, and he's had his aha moment. Mark, you've got a corporate job, and I want to talk about this transition to caregiver, because that for me personally, that would have been when my mom was diagnosed with Parkinson's, my dad was still alive, and so he was immediately the caregiver. And for me to leave my corporate position, that would have been a hard call. There were a lot of golden things attached to that corporate position. me about Otherwise, there is golden handcuffs. We all know the golden handcuffs. Tell me about that. What's your thought process as far as leaving your job? Where's your mind with this? Well, after my mom was diagnosed, this five-year thing, I knew I had to work hard to figure out how to do this because I knew nothing about it. basically, worked for about two years in the early phase of my mom's diagnosis, because it was manageable. I could kind of cover both. And then, as you guys know better than anybody, Alzheimer's is a slow decline. So as it got worse, it was just too hard. I was like cutting corners at work and cutting corners, taking care of my mom. And I thought, nah. And then I decided, OK, I've got to leave. And people are telling me, you're in the middle of this super successful career. How in the world can you give all that up? And it's so funny, because I I didn't even, it was like a no-brainer. I didn't even have to think about it much because it was like, okay, my mom took care of me, gave me so much love and care. Now it's my turn to do that for her because you guys can make me cry. I thought, shoot, I mean, she did everything for me and she has to be, you know, feeling horrible and I got to do this for her. And it was like, and then I thought, okay, the money and all those, that was, you know, to your point, all the things that they do to keep you. I thought, Okay, I got enough money to kind of make this work. And then I thought, you know, my faith is like, what's money for? know, do the basics, take care of yourself. But then it's all about the highest and best use of your money. And I thought there is no better or highest use that God has given me this gift of financial security to help my mom. And so it was like, no, no, it was easy decision. They said, oh, we're in a facility. said, no, no, no. Home is where she's going to get the best care. I don't know how, but I'm going to figure out how to give her better care than she'd ever get in a facility. So that was it. And I said, OK. I resigned. That was it. You know, I have to tell you, I mean, just speaking super authentically, mean, when Jason got sick, I mean, it wasn't that I was mad. It was just, you know what I think the word is? I don't really care if anybody judges me. It was inconvenient. It's an interruption. And I'm sitting there and I've worked so hard in my mind and he's been there to support me the whole time. And I'm just really angry. I'm angry that this is happening for so many reasons and not in work was like the last piece, right? But it was like, so I tried to do it all. I tried to work. the same time and I tried to do like I can have work I can do what I want to do and take care of my husband and I mean I even on my description on LinkedIn I talk about it I'm like I couldn't I couldn't I had all my priorities wrong and I mean I I applaud you very loudly for being able to to be insightful quicker quicker because it does I mean I think we try to have our lives and then and then we realize it's gonna be something new. And that doesn't mean it's bad. And I think that's the biggest thing is what I hear you saying is, I'm gonna make the best of this and you and you applied what you, what it sounds to me and I want you to go into that is you applied what you learned from work and what you taught other people in leadership to your own personal situation. completely, yeah. And I didn't even know it until sort of after the fact. That's what makes it great. It was all like in my DNA from, know, 25 years of working, that it just came out and I just did it. And reflected on it later, when I'm this book, it just came out, it's like I did all these things that were all corporate stuff. To my little situation, which is, you I worked for, you know, $12 billion company, and now I'm in this, like, just a few people on my little caregiving team and me, and it's the same, the principles apply no matter what. It's weird. So you get on this path, you're like, I'm going to take care of Mom, I'm doing it. and she is gonna live longer and she's gonna be happier. So, there's a lot of people in that situation. How easy was it to assemble this team? Like, did you think you'd just call around and start hiring people and it'd be easy? Did you start with a strategic plan? how did you get How did you get that? And I love that you had a mission. Like, I love that you keep the person that you're caring for right at the center of everything we do. Like, this is our why. You know what mean? Yeah, no, totally. Well, I started out taking care of it myself. I did that at home full time for about a year and a half. And then two things were happening. One, it was just getting too stressful. And I know people do that for the whole journey. I don't know how, because I wasn't sleeping, because my mom needed care 24 hours a seven. And then more importantly, I realized, thought, not only am I not a great caregiver because I'm so exhausted, I'm not deploying all these things that I need to learn to help her live longer and happier. So then it just hit me, I thought, okay. And I almost forgotten that after my dad passed away, I bought a long-term care insurance policy and it was like, it's just like forgot about it because it was so long ago. And I found that document, said, yeah, this will help me a lot too. So I was like, and I thought, okay. Anyway, so long story short is I said, I gotta find, I knew from corporate world, one is I had to learn. The best leaders in the world are amazing learners. And they have an amazing team around them fully aligned to the mission. So that was kind of the beginning. So I started talking to every expert. I called people, I read books on this as much as I could before I had this team in place. And then I thought, okay, I got to move, I got to accelerate this team. And so I thought, okay, how am going to do this? The long-term, the long-term current insurance required that I use agencies that were licensed. I just started calling agencies. said, okay. One is I'm gonna start small. I wanna try out a shift before I commit and are you okay with that? Even a short shift, a couple of hours. Anyway, so I knocked out all the agencies that wouldn't let me do a short shift to try somebody out, but I that was important. And then I found, I tried to find the ones that have expertise in Alzheimer's and dementia. So anyway, I landed on a couple and then I thought, I don't wanna interview these people at home because it'll be confusing to my mom. I would conduct court at Starbucks. Thank you, Thank you, Starbucks. And I would interview these people. They'd come in and I did, you know, I interviewed executives, so I knew how to interview and I followed the same selection interview methodology that worked for me for 25 years. And, you know, I adapted it to a caregiving role and I didn't know diddly about caregiving, but I knew how interview. And so I just, you know, I selected once I landed on somebody or, you know, that I liked. I would say, agency, I want to try like a two hour shift, three hour shift, and I would just watch them. And the two things that emerged that were really important to me, one is safety, because I knew my mom would not live long if she was unsafe. That's like common sense. So, you know, how they walk with her, they keep her safe, how do they transfer her, how do they help her with meals so that, you know, she didn't choke. Anyway, so safety was number one. The second was fun. I thought that's the second part of the mission. If they weren't creative in helping her have fun and games and play, my mom loved to play because she was a kindergarten teacher. Of course. She loved things like drawing and music and playing with her stuffed animals and her dolls and all the things you do when you're a child. And Alzheimer's is almost like a second childhood in a way. It is true. Anyway, so if they didn't have both of those things, they were out. That's the next. So I made a lot of mistakes in the beginning. I hired some people that were not excellent. I didn't want average caregivers. the other thing is they couldn't play on their phone a lot or ignore my mom. They had to be right on with her and have this connection. And I had to see it in my mom's face. It was hard because my mom, of the first characteristics that she had with her Alzheimer's, she lost her speech. So her brain was still functional, but she couldn't talk. But I could see it in her face if she was happy. and secure and safe. And if she wasn't, that was it. I went on to the next one. Anyway, so I ended up finding, I made a couple bad mistakes. One caregiver fell asleep in the middle of the night and my mom had one fall in her life and I had a little secret camera. I don't know if it was legal or not, to watch just for overnight shifts because I couldn't be around. So I had to get some sleep. And I saw this tape because she fell and she was okay. Thankfully, it didn't break anything, but this woman fell asleep in the middle of her shift. And that's how my mom kind of got up and then fell. And I thought, I was so mad. Anyway, I made a few mistakes like that, but pretty soon I got the hang of who was the best caregivers. And then I thought, okay, I used to do best practice studies at work. So I would watch the very best caregivers and it was so funny, they would all have something different from each other that they were excellent at. So I would like take notes and then I would share with the other caregivers a really good idea that one caregiver would have. And so I was like sharing these best practices across caregivers, which was big ego booster for them because I told them, say, hey, you know, that's a great idea. I'm going to tell everybody else about that. And so that made them feel great. And so it was like a spiral of better and better caregivers. And then the other thing I realized, because I finally landed out of this team that was just so good. and so loving with my mom and so creative and play and having so much fun. And she was super safe. And I thought, I gotta keep these people. I can't let them go. But the agency pays what the agencies pay. And so I didn't pay them any more than average, but I made them feel so important. I celebrated their families, their birthdays. I would give them flexibility on their shift. And it was so funny because they became, even though they didn't overlap shifts, There are five of them that were 24-hour care. They were helping each other on the mission They all kind of knew the mission to help mom live longer and happier and if somebody like couldn't make a shift because their daughter was sick or whatever They would say hey, I'll fill in, know, no problem I'll cover and and they were like working together in support of the mission and helped each other Let's cover cover and it would be beautiful thing. It's fantastic. And we're still friends with these five caregivers. It's remarkable I mean, my mom passed away in 2020, and we still celebrate things with these people. They're like part of the family with my sister and I. You know, I love that so much because I hear so much of the things just having worked in the mental health field, but working with individuals who serve other people, right? The characteristics, I'm sure that every, if any administrator or staff from skilled nursing facilities or congregate settings or people who work with people, are like, could you release the characteristics of people who care? Because you can teach for skill, but you can't teach for character. And this is really where, that's why I said to you, was like, I was so completely intrigued about your background and how you applied that to building the team for your mom. And the fact that you didn't pay anymore, because people assume that they have to pay exorbitant amounts of money. And when you get somebody who has a true heart for this, has a true servant heart who wants to care for someone, yes, they should be paid a fair wage, but it's the experience that they have, I think, is as, and I think you said that they were with you for six to eight years? Yes, yeah. That's crazy. Yeah, all of them. Yeah, all of them, and we're still friends. Yeah, no, it's like remarkable. Turnover is so high in this industry, but. They loved working, I was flexible in their hours. I would celebrate with them. We would go out, one of the fun part of the mission was making sure my mom went out every day was also the live longer part because she got a chance to sort of be out and exercise and move her brain. So anyway, we would take, because she would like, with no speech, we'd walk down the hall and she's so cute. She would point to the door and it was like, I know what that means, she wants to go out. So a caregiver and I would take her out every day. and we go to park and we go around the store. And when we're out, I put her in the wheelchair, so just for safety. She could walk with a walker, but the wheelchair was safer and we could cover more ground and go more places more easily. So, and because I would decorate her wheelchair with stuffed animals and pictures she had done, it was like, know, this like traveling wheelchair with all this stuff on it that she loved. It's a parade. I love that. That was the happiest wheelchair you've ever seen. It's like dude. That's so funny because my mom loved kids, being a kindergarten teacher. Kids would come up to her and look at this thing and just like they would be so in awe of this wheelchair and how much fun it was. I could just see her beam. She couldn't talk again. She lost her speech, but her face was so happy and smiling. That was kind part of the fun thing. It was good for her. She got out. And I think that's part of the formula for living longer and happier, those kinds of things. I think being active. Before you ask your question, I want to take a break just real quick because I want you to come back to that question. We'll be right back. This is so much fun. I know. Right now, right? All right, everybody, we are back here with Mark Wilson. We have just talked about the Parade Wheelchair. I love the Parade Wheelchair. I which is a lot of fun. It also makes it less scary to children too. It's Like, I will approach you because this is a fun looking device you're on. Like, it's not scary. Also, I love what Mark says about an Amy Goyer. She always said it, that they, with her parents, they also, I believe her dad also had Alzheimer's. But they celebrated everything, any holiday. We'll celebrate St. Patrick's They had a party. I could celebrate today just because today is today. Anything. So here's something you said. You said going out like that every day, the wheelchair, the children acknowledging her, it was good for her. Was this situation, what if this was good for you, Mark? What did you, what is good for you during this? my gosh. I had blessings all over the place, every day in different ways. And I was, again, was totally focused on this mission of living longer and happier, which made me feel really important. And there's a Christian writer named Matthew Kelly. You guys may have heard of him, but he has a little mini book called Holy Moments. And basically, he's an amazing writer and speaker of it. This book really moved me because He talks about these special moments where God comes down and is blessing him in that moment. I would have those all the time with my mom when she would smile and just see the joy in her face. Those were all things that kept me motivated and excited. The other thing is just having these great caregivers. Having an awesome team made you feel less stressed, made me feel less stressed, made me feel... Like, I can do this. And then it was working because we would go to the neurologist and neurologist would say, my gosh, your mom is doing so well for where she is in the phases of her Alzheimer's. She looks healthy and happy. And so it's like all those things made me feel good, to your point. And so your mom lived with you because I know that you said that your sister had lived with your mom and then you made the decision to move your mom in with you. And so moved in on third. Well, you're exactly right. I don't even know why I said that that because I would. The reality is, is I would assume you would have actually moved in with your mom because with Alzheimer's, that change would be so hard. And we all and that's something that we definitely know as you as and it's changed. Change is hard for all of us. I think we just call that for what that is. So so I just. I wonder about I love the holy moments. I think about a holy moment that we had when Jason and I were in New York City where the sun was really shiny bright on us. And it was in those moments that we forgot about the cancer. It's in those moments that maybe the time that you spend is not about my mom has Alzheimer's or my mom can't speak to me right now. It's just we're having this shared experience where we both feel pretty darn great and I'll take it. And I just, I love that. So let me ask you this, I think there's some folks, well, before I do that. How did this, because you've got a lot of people in your life at this point, caring for your mom, you've got a team of five, along with your sister, how did this, we know how it affected work, because you decided to resign from work. What about personal friendships going out? Were you able to feel like you were able to establish normal, like life changed, I was okay with the change, that was hard, every now and then I might be like, ugh, let's. I wish I could do a little something different. No, that's a great question. one of the five secrets, you started by secret sauce. One of the five things of secret sauce that I write about in this book that I'm creating is self-care. got to take care of yourself because if you're trying to, I call myself the care leader. So just as an aside, many of the caregivers that we had were of Hispanic origin. And one of them was so funny, she would call me Hefe, which is chief. And she would call my mom Prinsipesa, which is princess. And she'd also call her Hefe de Hefe. Like she was the chief of me, chief of the chief. I like the Hefe de Hefe, because that is the truth. That's nice. So it was hard to have kind of a normal life, because I had to get away just to recharge. I would go for a walk. I talked to friends. I would even go on a date or two here and there. it was hard. couldn't establish a relationship. I ended up breaking up with my long-term girlfriend because she didn't want to be part of this. And then I was like, okay, well, if you don't want to be part of this, this is who I am. Probably better. Thank you, Mon. Anyway, so yeah, it was hard to have kind of what you might call a normal relationship. But I felt very energized. I went to a therapist. were kind of recharged here and there. So I had ways to stay normal, but it wasn't like not taking care of somebody normal. But it was well worth it. I had no regrets whatsoever. So I want to kind of go after, because I want to go past caring. Because when your mom passes, then what? Because you've done some, you didn't just stop there. I mean, the reality is that you've become a huge advocate. And so that was one of the other things that I think is absolutely beautiful is your mom passes and then what do you, like you wake up and you don't have this team. You don't have this need for a team and you're kind of in the house alone. Then what happens? Well, after I kind of got through, you know, the initial, you know, early phases of grief, which I'm sure all of you know about in your listeners, then it was like, okay, you know, How am I feeling now? What am I going to do? And I thought for about 30 seconds, should I go back to work? thought, nah, I don't think so. I that way as well. Nah, I don't think I should go back to work. all like, choice, good choice, Mark. We like that. So it just kind of hit me. thought, I have so much passion. Well, it's two sort of two branches of my advocacy and passion. One is Alzheimer's. And I knew I had a lot to offer because I learned a lot about kind of this corporate application to care leader and being a care leader. So I thought, I gotta apply this. So one thing I did early on is I did some podcasts for UC Irvine's MIND Center, their Alzheimer's Center, because I was connected with the director because my mom went there for so long. And I told her our story and she just said, you gotta do podcasts. And so I did a couple of them about caregiving and some of these insights about safety and anyway, different things. And people would like reach out to me and said, you got a lot of insights, you should write a book. And then I thought, I can't write a book. I've never written a book, I have no idea how to do that. So anyway, I started writing and I started realizing that I have a lot to offer people. And that the essence of the book, because I had to do a book proposal through an agent anyway, they said, why are you writing the book? And I said, it's really to give people hope. That was really the reason. And I thought, OK, what does that really mean, hope? I thought, there's so much negativity about Alzheimer's. There's no cure. The few little mini cures that are out there now have so many bad side effects. It's like, how do you help people realize that there's hope? Because I had my mom live much longer than they expected and much, happier. She was happy all the time. And I thought, people need to understand how to do that. And then the other thing too is everybody is like, OK, when it gets tough, you put your loved one in a facility. And I get that. I'm not going to blame anybody for doing that. There's an alternative and I think people can be happier at home and there's a way to do that. And I talk about all that in this book that I wrote. it's like, mean basics like you can get any piece of equipment or any medical or medical related help at home that you can get in the facility. And I figured out, I learned fast, I figured out how to do that. My mom had all the equipment that she needed at home. had people coming in for physical therapy every week. for her whole journey that was covered by Medicare. I don't know how the guy did it, but he got the insurance to pay for it. Once a week, once a week, every week for like six years. And I think that kept her moving strong and a lot of people ended up in a bed with Alzheimer's. She was walking to Lurian with a wheelchair, I mean with a walker and a speech therapist. had a dentist that came to the house for dental work. I had doctors that could come to the house. mean, there's nothing you can't do. it's, know, other than, you know, hair cutting, it's all covered by Medicare. You just have to figure out how to make that happen. But so that's hope. You know, it's like, OK, you give an alternative to, you know, leaving somebody at facility. now I'm an Alzheimer's support leader for two Alzheimer's groups. And people suffer when they put their love in a facility. It's like they, there's a reason why, but then they're not happy with that because of, you know, different reasons. So I just, you know, I want to give people a a choice, that there's another way to do it, and hope that there's a way to help you live longer. So I did this book, I've done podcasts, I'm an Alzheimer's Support Leader, I'm now on the board of UC Irvine's Alzheimer's Center Advisory Board, and things like that. then the other branch of my advocacy and interest is patients' rights, because we don't have probably time to go into the details, but my mom lived 13 years instead of five, but she might have lived another five, six years because... She had a little minor procedure at the hospital when she was not doing well for the short-term thing. And they said, okay, you gotta do this procedure. And the doctor says, okay, you got two choices. He did a little cat scan. I can't do this one thing, I told you I could do, because of some scar tissue. Anyway, long story short, I can do this other procedure, because if we do the scar tissue one, she'll end up with an infection and the tube thing will be rejected and she'll have major problems. Anyway, she comes out of the procedure, it wasn't a major surgery, and the guy did the one that he said would lead to infection and be big problematic. And it's like he did the wrong surgery and the wrong body part. And sure enough, she got an infection and she ended up going home for like a couple weeks, because I didn't want her to stay in the hospital. And then she ended up getting sepsis and back in the hospital and she passed. So it's like, and that's a, I I talked to, after I sort of got settled, My anger settled a little bit. called a bunch of attorneys and they said, you have like an open and shut beautiful case, you'll win. But because your mom's age, which at that point she was 88, and because of her Alzheimer's, damages are based on pain and suffering. She's already aged and she's in pain of Alzheimer's. The jury award wouldn't be enough to make it your worthwhile. And I thought, geez-o-pees-o, how could that be? That's like not right. It's not what's a life worth. The older you are, apparently the less your life becomes. So, so then now when I, when I settled down and realized I couldn't do a lawsuit, I got involved with consumer watchdog who has a patients rights branch and I've been working with them advocating in Sacramento for changes in laws and things. Anyway, so that's another branch of my advocacy, but besides all. yeah, think it feels important. And so it's now my new mission. But you know what? It's a good mission. And the reason being is just because I think there's so many people who would feel overwhelmed by it. And then by being told, because it was never about the money. Like I already know because it's not about the money. It was about accountability and it's about accountability. There's a lot of people who don't have resource and everybody deserves equal patient rights. That's what I hand was saying. And if it up in my mom, I don't want to touch the years in the next. It's like, don't know how you change the laws on that. That's sort of bigger than me, but we have, we actually had an impact. changed the, there was a, you'll love this quick story. There was a cap in California that was created in 1971 that cap damages for medical negligence to $200,000 a year. And now in today's dollars, it hardly pays for expert witnesses. I'm like, that's a physician's group, Bob Miss group. So we've actually changed that. And it's slowly, through the legislator, we're slowly changing that cap. But it's got a long way to go. the medical industry, I call it the medical industrial lobby, is very strong. It's very hard to make changes. they're needed for sure. So I have two questions. Can I ask two sister questions? no. Yeah, it's time for sister questions. I can't even believe it because we could keep talking to Mark. feel like have to ask for permission. You can ask a small piece. My first one is, and I know the answer, but I want you to... I hear a very successful career. And I know for a lot of people, younger people that are listening, I'll have a successful career and this is what I have. But when I listen to you, if you had the two, if you looked at that career and this career, this life that you've had with your mom and what's come from it, where is your fulfillment? That's a one. You sister questions are so great. I love them. I thought I was prepped for it because I was, but yeah, didn't know this one. This is a new one. I love the question. Well, I would say, well, both. I mean, I was so happy in my corporate career, helping leaders and executives and coaching people. And I was very fulfilled. And then I was very fulfilled to take care of my mom. And now I'm very fulfilled being an advocate for Alzheimer's and for patients' rights. And it's like, and I think it's all about, you know, being passionate for your mission. When my mom was living longer and happier, I was, that's all I thought about every day. And now it's like, it's similar with Alzheimer's. And when I was in corporate world, how do I help leaders and individuals grow? And how do I help the corporation be successful? And that was my mission. And it was clear and fun. And, and I had fun at work and I had fun taking care of my mom. If that's, know, people don't believe it because caregiving is stressful. It is when you don't have help. So. It's more doable if you have a team that would be my suggestion. I love that mark has been fulfilled for many years You've always found a positive and a fun attitude, which is mark one of the things I got I got I got that for my grandmother That that belief in people and round up on everything has got me in some trouble we can go into that another day Okay, I have I have this is my other one that was okay So I have not read the book, I have not read Holy Moments by Matthew Kelly, but I love that term, holy moments. And when you said it, I actually always have to take a step back when someone says something because it triggered me to think about holy moment. And I was wondering if you would share a holy moment with your mom, like a moment that you recall, like what are your favorites? Well, yeah, so many of them. But one of them was this one I kind of alluded to about taking my mom out, you know, for with a wheelchair all decorated and all this stuff. I remember one time we were out and since my mom taught kindergarten for a long, long time, I had a parent who kind of saw us and came up and she realized that my mom couldn't speak with her and stuff. So she kind of turned to me and she said, your mom was the most amazing teacher my, I think it was Mike, my son Mike has ever had. in kindergarten and he is, I forgot, he's like a judge somewhere, you know, and she said, I don't think he would have been so successful if he hadn't had this great start that your mom gave him. And I thought, gee, that is so fantastic. mean, and she didn't, my mom really didn't respond to that. I don't think she heard what he was saying, but I beamed because that was a holy moment that my mom was, and I observed her when she taught and she was just, I don't know how she gave everybody in that class, there might be 25 kids in the class, gave everybody individual attention and motivated and it fun. And I don't know how she did that with 25 people in the class, but she was special and that made me feel special. That was a holy moment. There were lots of them, so thank you. Make sure you put holy moments in the book. Make sure you put holy moments. all your favorite holy moments. Because those are things that help people think, well, that was one. Because a lot of people like caregiving. It's so hard to see when you're in the muck of it, when you're middle of it, and it feels really hard. It's those moments. I always talk about looking for the glimmers. And the holy moments feel, it's the same kind of same feel. Is looking for those moments, those glimmers, the silver lining of the moment to say. And I think about, like, we wouldn't be here podcasting had we not have this happen to us. You know what I mean? And so no matter how hard it is, there's always a reason for the why. I think I'd be remiss if I didn't ask this, because this was the one question I was going to ask, because we're clearly over now. I just am like, I really want to this. There's going to be a lot of people out there who say, I don't have the resource. to be able to have a team of five people. And darn it, I'm having a hard time having fun. What's a piece of advice that you might give to those folks who say, okay, I can't hire five people. Like, how can I find an experience? If I'm my sole caregiver, because there's so many sole caregivers out there, and you're very fortunate you had a good relationship with your sister, I love that you said it brought you actually closer to caregiving, actually brought you closer instead of dividing you. What would be the advice that you would give to somebody who is a solo caregiver or to the person who says, I might have a little bit of resource? What are the encouragement that you would give to them and any words of wisdom? A couple actually. So one is, I really think this long-term care insurance was key. Even though I had resources, it helped me so much. I mean, it paid for When I had 21st 7 care, it didn't pay for everything, but certainly the first half of the journey, it paid for all my care. And the problem is you have to get it before your symptoms show. So if anybody's out there just thinking about their loved ones, research it. We don't have time to go through the different kinds. I could give you a whole seminar on that, but look into long-term care insurance for your loved one before they have problems. That helps a lot. Regardless of that then it's like okay What are the things out there that you can tap into one is a lot of there's there's daycare Alzheimer's daycare which I know people take advantage of that and you get great care there and that could You know alleviate some of your some of your health and problems Another thing is look to your family I mean so many people you know are reluctant to ask for either physical help or financial help from you kind of core or extended family. all I can say is no. This is like one of those, just ask. You might be surprised that you're gonna get more help, either kind of help help or financial help than you might think. then it's like making a priority. It's kind of like time management one on one. You do what your priorities are. Yeah, don't maybe not have a lot of extra resources, but no. between you and an extended family, you know, there's some money somewhere that you could probably tap into for some, a little bit of help. That's true. Well, and there's also federal money. I always remind everyone of the national, the lifespan respite dollars. And so it's really being able to seek out from government agencies. We've got lots of resources on the website that we've just updated. It's like almost nine pages of websites that say, hey, here's different types of resources. So I really appreciate that, Mark. And of course my last question, which you are absolutely expecting, okay? What is your favorite guilty pleasure? What is the one thing that you do just for yourself? It's always the same. When I was caregiving, it was very simple. mean, go for a walk or meeting a friend. But now that my mom has passed, and as you guys know, 13 years taking care of her at home, I didn't travel anywhere. So now it's really travel. And I've fallen in love with Sicily, Italy. My sister and I went there two years ago for the first time, and we fell in love with a particular place called Terra Mina. the hotel is San Domenico Palace. It's like the best hotel on the planet. And it's right on the cliff. It's beautiful. my sister is an art history, archeology major. She dragged me through every archaeological site, every artistry, every museum. And I told her, said, I will take you anywhere so long as I get gelato every day. That is the best way to end this. A1, it's Teremina. Because then we just got back from there. And we're already booked next year to go again. So that's my guilty pleasure. Then a sub-pleasure is the gelato every day there. Every day. That's so head on. That is. I love that. You know, Mark, thank you so much for being with us. This was so good. This feels so right. It does. This was a good way. So I love you guys. You guys are amazing. Hopefully I convince you to adopt me as a brother. I mean, I'm already thinking about I just need the date next year of our vacation. That's I mean, I'm already there. I'm already at San Domenico. I I know where I'm staying. I gotta go. Late August. And I know I know to be an official brother, I have to get a southern accent. And I have to tell you, I've never lived in the South, but I love the South. I've been there many times. So I'll work on that and then I'll be an official adopted brother. Your first word is y'all. Well, no, actually no. y'all's fine, but it's one sentence. And if you practice on this, it's, like that Sprott. I that Sprott. That was good. That was perfect. Perfect. And so if you just keep practicing, I like that Sprott every day and your eyes get real long. That's how you'll know. I used to vacation with my mom and sister in South Carolina a lot. For work, I go to Louisville like once a month. And I know that's like semi-south. Sorry, Louisvillians. I did pick up a little bit there, but I got to work on it. Louisville, because my best friend's from there. It's Louisville. I know, Louisville. Louisville. Not Louisville. I got told that first time. Not Louisville. Louisville. I love it. Mark, thanks again for being with us and guys, thanks for listening in. We appreciate you. And until the next time when we confess again, we'll see you next time. Bye. Well, friends, that's a wrap on this week's confession. Thanks so much for listening into the podcast. But before you go, please take a moment to leave us a review and tell your friends about the confession show. Don't forget. Visit our website to sign up for our newsletter as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest, and Twitter. You'll also find the video recording of all our episodes on the Confessions website and our YouTube channel. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a Reluctant Caregiver have taken care in selecting the speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this show are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted and no part can be reproduced without the express written consent of the Sisterhood of Care, LLC.