This is the whole care network helping you tell your story. One podcast at a time content presented in the following podcast is for information purposes, only views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the whole care network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the whole care network.

Basically, I kind of stepped back and I said, yeah, the mission, this is my mission and by the way, as important as my work was for 210 years, this is even more important. So not only did I have a great mission, it was the most important mission in my life.

Caring for aging parents or other loved ones while working, raising Children and trying to live your own life, wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the Happy Healthy Caregiver podcast to show where real family caregivers share how to be happy and healthy while caring for others. Now, here’s your host, Family caregiver and certified caregiving consultant, Elizabeth Miller.

Hello, everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. We are also thrilled to be a part of the whole care network streaming radio channel. So if you wanna listen to that, download the app, the WCN streaming radio app and you’ll get the Happy Healthy caregiver podcast. A lot of other podcast and music and content as well.

Is your company looking for a speaker for their employee resource group or an organization? You are affiliated with planning an upcoming Expo conference or Caregiver appreciation luncheon. If so consider passing along my name and organization as a potential speaker. I’m available as an in person or virtual speaker and enjoy connecting with family caregivers and fast tracking them to support and resources. I’ll link to my speaker page which includes a spiner demo video in the show notes page. I’d like to thank our episode sponsor, Rare patient voice.

Do you want to earn cash in exchange for your opinion? Rare patient voice or R PV? Helps connect researchers with patients and family caregivers for over 2300 diseases and conditions for patients and caregivers. R PV provides the opportunity to voice their opinions to improve medical products and services while earning cash rewards, rare patient voice, helping patients and caregivers share their voices if you’re interested, join the R PV panel at rare patient voice. com/happy, healthy caregiver for this episode segment of what I’m reading. I recently read a book called Cersei by Madeline Miller and it was a recent book club pick of ours.

This was really different than any of my other kind of regular picks, which is why that I enjoy going and been a part of my book club for so many years as it helps get me outside of my normal reading zone. Cersei is a fictional read about Greek gods. Essentially, I did take Greek mythology as a college course and I struggled with it. I kind of struggled with this book too. I like the main character Cersei. She’s a daughter of a Greek God Helios and the Nymph Percy who discovers herself throughout the story, but much of the story is spent really in her own solitude.

I also appreciated the research that the author did and I found the secondary caste stories just to kind of be too much. I felt like maybe the author was trying to put a lot into one book and it was making it hard for me to keep it all straight. Kind of like how I felt back in my Greek mythology class in college. There were some terrific takeaways about female power, unlikely friendships and just overall a messy life. If you like Greek mythology, this book is for you.

For me though, I did give it three out of five stars. My favorite thing that I want to share with you this week is, you know, and I was a little bit skeptical about this one, but this product has me hooked frankly and that is my kindle paper white. I was skeptical because I’m already a paper book reader and I’m already an audio book listener. Did I really need one more platform or method to consume these words of art? But my kids got me this Kindle for Mother’s Day this year and what I really have been enjoying about it is that it’s given, you know, me more opportunities to read like situational options to read and Kindle is just kind of part of part of that.

So if I want to read in my bed while my husband is sleeping, I have a lightweight weight to bring multiple books on vacation now, which is great. I can read poolside or beach side and you know, there’s no glare because of this paper white books are also more affordable on the Kindle platform. So if I don’t want to wait for an audio version of the book from the library, the Libby App say for my book club book, this gives me another way that I can put a hold on the Libby Kindle version or I can just simply buy the Kindle book outright from Amazon and save some money.

I did prefer originally, I got the version with the ad on the front, but I paid $20 through Amazon and it was worth it frankly, because I wanted to actually see my digital book cover on the outside of the Kindle. I’ll link to it in the show notes page.

Let’s meet today’s caregiver in the spotlight. Meet Mark Wilson, a former senior leader at Taco Bell with a focus on organization and people development. After retiring early to care for his mom who lived with mixed dementia. Mark embraced the role of a care leader, combining his corporate hr skills with his caregiving journey.

He developed a dedicated care mission, hired and retained top notch professional caregivers and became a passionate learner about dementia care. In this episode. We are also going to be delving into Mark’s new missions since his caregiving duties have ended and explore how holy moments and the mood elevator have shaped his daily life. Enjoy the show.

Hi, Mark. Welcome to the Happy Healthy caregiver podcast. Thank you, Elizabeth. I appreciate being here. Thank you so much. I’m excited to, to chat with you. I think we originally got connected through linkedin.

Like we, I, you know, I appreciate the people who kind of comment and engage on my stuff. And uh I, you know, I think that’s originally where we got connected and I’ve learned more about your story there and now everybody else is gonna kind of learn more about your stories um too. But before we kind of get into all the good stuff, Mark, I like to get people’s thoughts on whatever we’re pulling out here from the happy, healthy caregiver jar. So this is like a PDF of inserts that it’s a product I have available on my site to kind of help, help folks um and encourage and motivate.

So first, this says the years teach much which the days never knew. Oh, that’s very deep. It’s a Ralph Waldo Emerson. The years teach much which the days never knew. Um, but that, but that must have spoke to me like, does that resonate with you in, in a caregiving way at all? Yeah, I think so. I mean, I think the, the essence of it is you have learnings in your life that you don’t even consciously, you’re not consciously aware of. And then when you’re caregiving, you kind of draw on all that, you know, that some of that is just like deep inside you that you pull out and apply it to help your loved ones be better.

So, yeah, I know. And then sometimes I think we’re so deep in the weeds during the days that then you kind of look back and you’re like, oh my gosh, look at this life. I’ve been living for this caregiving life like it’s, it goes fast. It’s almost like the messier. It is, the faster it goes. I feel like you’re right. I was thinking maybe you’d be pulling out a cannoli from your jar. But no. Ok. Oh, that’s great. Listen, it’s too close to like my, my witching hour when I get a sweet tooth here.

So, uh love that. Well, let’s, let’s learn a little bit about you here. Mark. Like, you know, what did, what did, first of all, what did life look like you before caregiving came into your life? Yeah, I was uh an ambitious uh hr leadership development professional and did the classic uh go up the ladder um and became an executive in human resources and leadership development training for different companies. Uh The longest time I was with Taco Bell, which is, was Pepsi first and then spun off um to young brands.

But Taco Bell for 2021 years heading up their training department, hr recognition, leadership development, kind of all those specialty areas. So amazing. Well, they, you know, they could benefit and now now for sure, from all of your caregiving experience to pass on uh to the HR teams and maybe we’ll talk a little bit about that, but tell us a bit a bit then about how you woke up and realized like that you had this other responsibility. Well, um my mom is who I took care of. Um and, and she, she was, I mean, she’s an amazing woman, always was uh took care of my sister and I in extraordinary ways.

Um She was a kindergarten teacher. Her whole life and she and my dad, my dad was a music teacher and the two of them sacrificed so much for us. My sister and I, we all usually work like, multiple jobs to send us to private schools and, and just was amazing. Um, anyway, so my mom, my mom was sort of, you know, showing some symptoms, you know, of cognitive, you know, issues and so forth. And I was the classic denier. I mean, I was like, oh, yeah, just old age.

But my sister was like, no, she’s a little more pushy than me. She says you gotta, we gotta get her tested. Something is not right here. And so we did, we went to UC I mind, which is an amazing research resource. Yeah. University of California Irvine, which is near where we live and it’s, they have an Alzheimer’s cognitive center that’s like best in the country. And so we went there. Yeah, it’s right around the corner from where we live. And so we went there and sure enough, my sister was right.

They did all the testing and all that and found out that my mom had both Alzheimer’s and uh vascular dementia both. Oh, wow. And so I, you know, we got that diagnosis and I was shocked and scared and all those reactions. Um and the, the, one of the leading doctors, neurologists in the country in this topic basically said because of these two dementias and some comorbid comorbidities. My mom had about five years to live and this, she was in her mid seventies and I thought, oh my God, five years, that’s nothing I was like I was, and it just hit like in that, in that moment, it hit me and I said this is not good.

I’m gonna figure this out. Um And you know, being somebody who’s kind of aggressive, learner my whole life and pretty confident and successful, I thought I’m gonna figure this out and I’m gonna prove this expert wrong. No. So I was like, motivated to say, no, no, she’s gonna live a lot longer than that and happy and I don’t know how I’m gonna do this yet, but I’m gonna figure it out. And so that was kind of the genesis of the journey. And I thought, ok, you know, I took care of her part time, you know, I kind of cut some corners at work and, but after about two years, I realized a year, maybe a year and a half, I realized I couldn’t work anymore and take care of her because I talk about that a little bit.

So I think that’s something we don’t, we haven’t impacted like the why did you know it wasn’t working like, like what was happening? Yeah, I was cutting corners at work and, and it wasn’t good. You mean like you delaying deliverables or I was like, and I was stressed trying to work and take care of my mom at the same time and just, it just didn’t feel like either one. I was doing great. I mean, I, I it’s hard to do those things together and, and I know, you know, some people don’t have a choice, they have to continue to work.

Um, but I was, you know, blessed that I did have a choice and I decided that, ok, I’m gonna just retire super early and, and I’m gonna just figure this out and thankfully, you know, I had some savings and was able to do it. So I thought, ok, I’m gonna try this. How did that conversation go? First of all, did as a leader in that company? Did, did you feel like you could be open about your caregiving experience or, you know, did you feel like there was a stigma and there was a fear maybe that, you know, you wouldn’t be, you’d be passed up for different things, but you’re, it sounds like you’re already kind of at the top of the organization at this point.

But what was that like? Did you, were you hiding it or were you kind of out in the open with it? Oh, I think in the beginning I was hiding it. Um And then I realized that I had to be open with it and, and because of, you know, like why is Mark, you know, screwing up basically at work? What happened to Mark? Yeah, hes like missing in action. So, anyway, so I was very, you know, I was open and they, and the, you know, I was not the se a senior leader.

I was kind of a second level type person and they were so my, you know, my boss and their team was so good, they basically understood it completely. In fact, helped me kind of bridge to a little bit of retirement, you know, program. Not, not as if I’d worked there until retirement. But can I ask you how old you were at this time? It was 53. So we have like my age, I have a birthday and they were so kind that, you know, they basically said, hey, we can give you, you know, a little bit of retirement even though it’s much earlier than our requirement.

And they bridged me to some medical care. So I had medical insurance, you know, that I was able to kind of help pay for, but they paid for a lot of it. So, so that would work out. Ok, let’s, let’s do this thing and, and that was it. I just decided and stayed home and ok, I wanna get into that. But first I got one more question about the working days, the work. Were there any benefits that you like you’re in? Hr you kind of maybe you’re talking about employee assistance programs or I don’t know if that, you know that at that point, there was employee resource groups or groups or networks like that at that point?

Um But were there any benefits that you were able to take advantage of, like before, kind of the retirement? And the? Yeah. Yeah, that’s a good question. There were available. I didn’t take advantage of it but, I mean, companies that are progressive, like a Taco Bell at Pepsi have, um, you know, kind of resources for, you know, therapy and counseling, that kind of thing. There wasn’t really, at that time, a specific group of, for dementia or Alzheimer’s care, but you could see if, you know, you know, a psychologist and get relatively free, you know, help, um, and things like that.

Um, and then of course, you know, you can apply for a leave of absence, you know, that kind of thing. Was it a paid leave? Did they offer that a paid? No, it wasn’t, it wouldn’t have been a paid leave. And I knew I knew a little enough about Alzheimer’s at that point that I knew it wasn’t going to be like, you know, a three month thing. It’s gonna be a long term thing. So, so I decided not to even pursue that. I thought, ok, I’m just gonna resign and, but yeah, at that time, there’s some help that companies advanced companies like a Taco Bell offer, but not a lot to be honest with you. Yeah. Yeah. Yeah.

What could you have used? Um, well, ideally, you know, paid leave of absence would be nice. Um Now, in this case, I think it wouldn’t have helped cause it would have been much longer than six months or whatever leave of absence might be, but it would be nice to have that. Um And then I think, um, I think it’s offered now, but for example, like, like Alzheimer’s um, organizations, like national Alzheimer’s, they do a lot of presentations to organizations and an awareness building and that probably is going on now.

I can tell you it is because I do a lot of that with companies. I don’t necessarily focus on dementia. Alzheimer’s but more resources for caregivers and helping them to, we could have had Alzheimer’s support group there. I mean, I’m now a facilitator in Alzheimer’s work group. Um, where, where are you facilitated in Huntington Beach? Southern California. Yeah. So I just started a few months ago, I was trained by Alzheimer’s Association and now I’m like, oh, I love it. It’s fun. Yeah. And I can see people benefiting.

So, if organizations had something like that, I think that would help because I think a lot of people probably have family members that have this. But it’s, again, it’s your point about it’s a little bit of a stigma not to, you know, not to say much about it because, yeah, unfortunately, people who were caregiving even part time have to make some shortcuts at work and, and I think people are reluctant to say that. Um, but I think if it was more open, these groups were meeting, you know, on the campus of a, of a, of a business that would be a big plus and I don’t know how much of that I should pay you a little bit because I feel like you’re validating the corporate support package that I’ve put together, which is good.

I don’t do dementia support, you know, groups specifically, but like caregiver support, I do monthly group with these organizations and then webinars panel discussions and like resources for their er their resource group leaders. So I think, I think that’s great because I bet you there’s a lot of employees that are kind of quietly struggling with that with family, family members and, and they don’t necessarily get a lot of visibility at work and yet, and yet nothing’s really going to change if we don’t, right, if we don’t feel.

And I do think it kind of starts at that upper leadership level because it’s happened to you. It happens to lots of people and just talking about that and kind of creating this space where to talk about it and realize that like life doesn’t just happen, you know, outside the hours of 9 to 5, like it’s, you gotta make calls, you need to do things so that culture is changing. And then what we’re finding through a lot of these employee resource groups is that their hr leaders and, and different um corporate leaders are really tapping into this group to say like, hey, you know, what do you all really need and you know, what would be helpful to you and what benefits and, and they’re really changing kind of that, that landscape um as more of a partnership.

Um But I think that’s cool. And to your point, like, I don’t know that I um I wouldn’t phrase that. I cut corners as a working caregiver, but I would say that I definitely put, went back into low gear. Like I was not looking to take on new responsibility. I was coasting and I needed no change, you know, to minimize that. So I could, like, block and tackle outside of, in the totally understandable and, you know, if, if it was more open and supported, I think it would be better for the person for sure and it would be better for the business because it wouldn’t be this, what’s wrong with, you know, Elizabeth, you know, it’s like she’s not used to be or mark and it’s like, that’s not good.

They’re still in there. Yeah. Don’t lose hope on these folks. Like, I mean, and, and, and, and yet I do think like, I don’t know if you believe this mark, but I believe like as caregivers and we’re going to kind of get into your caregiving story. But as caregivers, we learn a lot of skills that I think are transferable as employees. Um, you know, problem solving and advocating and um I don’t know what would you add, but are there any skills that you’re like? Oh, I really hone these skills as a caregiver?

Oh, totally. I mean, yeah, advocating for sure. Uh communicating with all the people that you do as caregiver, uh empathy skills, you know, listening skill. I mean, just the communication skills that are required for an Alzheimer’s patient. I mean, that gives you a lot of creativity, a lot of subtle communication skills, uh patience. I mean, there’s all kinds of workplace skills that can be transferable. That patience. One was hard for me to learn. I know that was, that was testy. I was like, I know I’m supposed to learn this.

Like you keep giving me examples, but I’m failing, I’m failing as this. Um Well, and so, you know, you got to this point then where it was like, you know, after a year and a half, two years, like, it’s too much. I can’t do work. I, I, and, and oh, by the way, maybe I can, can retire early and your company was working with you on that. But I imagine that transition was hard. You, you’ve worked many years of your life and you found value in your work.

Um and it was a big part of your identity. Like, what was that like? Well, it was actually, it wasn’t as bad as you might think because I, I mean, I’ve always been very kind of goal driven, mission driven. And I had a really clear mission in my mind when I decided to leave work and take care of my mom full time. I wanted her to live longer and happier than anybody on the planet. And that was my mission. And that was my total foc total focus.

And that’s kind of what I’ve always been like, ok, focus on something, make it, make it work and achieve it. And so that was my mission and everything I did personally. And then, you know, eventually I, I needed caregiving help with home, home agencies that helped me get, I was driven and my team was driven toward those objectives. So that, that kind of, that kind of helped me. So it felt like, you know, felt like even though it was my mom and I loved her and I did amazing things to help her, it was, it was like work.

I mean, it was like, ok, this is the mission right now. It was like the biggest strategic project that you ever got. It was like, I don’t know how I’m going to do this, but they gave me this thing and gosh, darn it. And then there’s of course, the emotional side of it um as well. Um But I love that you applied of your professional things and, and I do, sometimes I shared it with caregivers like you, you’re managing a really big project, like it is especially working caregivers can kind of make that and, and so you’re gonna need a team of people.

You’re gonna have to do a gap analysis of what you don’t have and, and, and fill in a little bit. So talk about like, how did you get started? You’re gonna, now you’re full time. Mark caregiver. Maybe you didn’t even call yourself that you’re like mom’s mom’s my mission. It was my mission. You moved in with her or did you, did you move in with mom or vice versa? Yeah, I live close by. So I just kind of moved in to the house where she lived in and, and I was like, ok, so basically, I kind of stepped back and I said, yeah, the mission, this is my mission and by the way, as important as my work was for 30 years, this is even more important.

So not only did I have a great mission, it was the most important mission in my life and it was really clear. So I thought, ok, so I started taking care of her myself. My sister helped me uh also, but I was kind of the, the number one kind of care person. The primary caregiver is what we do. Yeah, primary caregiver. And I, and I, you know, I was working it and I started figuring out that if I’m gonna have her live longer and better and happier, I gotta learn some stuff about Alzheimer’s and I didn’t know anything about it, anything about caregiving. Nothing.

So I started like, reading and talking to people and, you know, everything I could. Alzheimer’s, you know, I was on the, their hotline, Alzheimer’s association, like three times a day asking questions. I mean, I do have a hunger to learn and I was learning fast and all of a sudden I was like realizing that there’s some amazing things that I wanna try with my mom to accomplish the mission of longer happier. And I don’t have the head space, the physical, you know, I was just tired and I couldn’t focus on those things, but I was taking care of every need she has, which I wanted to and the home and trying to feed yourself and Oh, yeah. Yeah. Yeah.

And so it just hit me one day. It’s like I’m gonna need help and if I’m gonna get help, I’m gonna be a better caregiver. And all of a sudden it hit me, you know, my whole history and, and working history was about leadership. So leadership development, I coached executives on their leadership and I thought I’ve got to be shift from caregiver to care leader and just like, hit me like I woke up like a bone. It was like one of the biggest insights ever had. So I said, OK, I gotta be a care leader.

And then I remembered it was like, I remember that my mom had long term care insurance I bought for her many years ago cause my dad died very young, he died like 103 and, and somehow some, some insurance guy just told me get, get long term care insurance for your mom. It’s gonna really help you. I didn’t know anything about it. I thought sure, why not? Ok, so this thing was like out there never used and I thought I gotta figure out if I can dust, find this thing, dust it off the policy and sure enough I did and yeah.

Ok. So it’ll help me some to hire these caregivers at home. And I started just figuring out how do I do that called agencies? And you started the process of finding home caregivers to help me with the, you know, daily living things, you know, and I think your leadership in hr training came in great when you were hiring people. Well, it did in the beginning I was clueless on anything about it. And I hired some not great caregivers in the very beginning. But the good thing about hr we know about not only hiring, but we know about firing.

Thank you for playing. Goodbye. Yeah. Yeah, it was pretty quick and, you know, pretty soon after, you know, oh, maybe six months of finding that great caregivers. I kinda, it sort of hit me what I needed in a caregiver. I needed number one, I needed an experience, somebody with experience with Alzheimer’s or dementia. And then number two is I needed, um, two things were, become, became really important to me as I read and research one was safety because I kind of figured out that my mom is gonna live much longer than five years, which was my goal.

I gotta keep her safe cause if she falls or chokes or just, you know, that many Alzheimer’s, you know, Alzheimer’s patients are prone to medical issues in lots of areas. And so safety was number one, I needed a caregiver that was just made that a priority. And number two is I realized that I had to do some really creative things around stimulate stimulating her, uh keeping her physically active nutrition, supplement, all kinds of things that I was learning about that will help her some of those activities that you were trying on different things.

What were some of the ones that stuck out was one of the first I just said, OK, let do some drawing. And my mom fell in love with drawing and, and, and that was stimulating to her and comforting to her for her whole journey. I mean, for 12 years after that. So she so that things like that um they played games with her, you know, not like board games but like fun games. My mom was a kindergarten teacher, so she always had a good imagination. And so they played, you know, she had stuffed animals and they played like, you know, just like fun things with stuffed animals play.

I play with my mom or was the kind of a board game. But, yeah, you do have to get creative. Yes. Oh, yeah. And my mom loved creative things and you could see her just smiling and having fun and, and I loved that when I saw that and things like music. My mom, you know, was a child of the fifties and so all the old Frank Sinatra stuff, big bands, you know, you know, one of the caregivers figured that out pretty quickly and played it on her iphone and my mom would just like smile and, you know, shake her hip, shake her hips, you know, it was like, it was just fun and, and so, yeah, so, so I figured out that safety is number one.

And then after that, somebody who was some people who are creative and knew how to have fun and were compassionate and loving and just made my mom happy. And I think that’s all those things as well as nutrition and physical activity and physical therapy regularly. All those things kind of helped her live longer. And I think, and I don’t have, I can’t, you know, I’m not a sign, I can’t measure what contributed to what. But I was, as I was reading, I mean, all these things had quote unquote, some evidence that lend, lend himself to longevity and happiness.

And I thought it’s likely not one thing Right. Like it is, it’s the combination of a bunch of different and your, and your, your intention, like your intention kind of going into it. Of, um, the mission, the mission for mom. Was there any kind of secrets about? Like, because I know one of the things I hear a lot from caregivers at a coach is that their, the turnover of the professional staff is so large. Like, do you have any secrets on retention? Oh, totally. Well, that, that was really important to me because I, you know, I knew because I could just see it when my mom met new people, she would get agitated and anxious and, and if somebody was familiar to her should be calmer and happier.

And so one of my goals was find these amazing caregivers, which I applied to your point. A lot of hr I did a lot of, you know, kind of professional level interviewing of these caregivers with good, you know, method that I learned as an executive. And then once I found these people, I then just did everything I could to keep them. I, I didn’t, there were three agencies um primarily, especially in the beginning, I did have a few private folks later on, but, but I didn’t pay any, any more than market rates.

And I kept, once I landed, I, there, I call them the big five, there were five caregivers that I ended up, you know, kind of finding midway through my mom’s Alzheimer’s journey and they stayed, all five, stayed with u with us full time from mid to the end of her life, which was about depending on the person 6 to 8 years. Um, and I had no turnover of any of those five people in 6 to 8 years did not pay them any more than market rates. But what I did and kind of, the secrets are a, um, just really kind of, first of all, I told them about the mission.

I mean, that was that their mission was not just, you know, putting time in their mission was to help me, help my mom live significantly longer and happier than possible. And, and that, and they love that mission. It’s like, ok, wow, that’s pretty, pretty important. I said, yeah, it is important. And so that was number one second is I, I would always uh engage them in, in their ideas. It was like, I need their brain, not just their, you know, experience. So, so if they came up with an idea, I always, you know, celebrated that and recognize that was a, you know, something they stimulate my mom or have fun with her.

And then I would tell them that I’m gonna, you share this idea with the other caregiver team to encourage them to do the same thing and they liked it. It’s like, no, everybody’s using my idea, you know, it gives them like a bigger purpose. It’s like, yeah, exactly. They feel recognized and important and engaged because their ideas are important enough for me to celebrate it with other people. And then I try to treat them like family. When we go out in the outings, I would do some kind of recognition for our caregivers, you know, whether it was a birthday or a celebration.

So they really felt like part of the family was the idea and I think that’s went into motivating them, uh, so that they wouldn’t leave. And that was really important if, once they, once I’ve hired somebody that was a keeper, I, I figured out how to keep them. So because any kind of, any change with everybody, again, people are different. But most Alzheimer’s dementia patients don’t like new people, new change. And so this is really important to me that to find these amazingly creative and competent caregivers and who just showed so much love for my mom and keep them.

And I did and I did. Yeah. Well, that, thank you for sharing some of that, uh, secrets that people can kind of, uh, apply. I’m just curious. Did mom ever get on your nerves? No. Oh, wow. You’ve got a good temperament, I think, Mark. Well, yeah, thank you. But again, it was, you know, she, I can’t go into all of it, but she was just such an amazing mom for so many years with, with my sister and I both worked so hard but, and always had time for us and she would, I remember she would like, drill me on my spelling and vocabulary when I was young and just was so, I mean, she had so much energy and support and just people and like at her funeral, um people would, would say how much when she walked in her room, her smile would like light up the room and the, the kids that she had in her class, you know, came as like your mom influenced, you know, Johnny or Janie so much and now they’re successful because they got her to start with your mom.

And I mean, it’s from kindergarten. Oh, I get it. My aunt was a kindergarten teacher and my, and my uncle was a bandleader and they were married and like their funerals had the longest lines of all of these, you know, and, but I lo I love, that’s one of the nice things about a funeral frankly is kind of like learning all these things about. You already knew she was spectacular. But then you’re like, whoa, she’s touched all these people’s lives and like, you know, but when you really hear it, you, you definitely know.

Well, I’m, I’m curious too. Like this was you achieved the mission, right? Like, yeah. Yeah, she, she ended up living almost 13 years, 12 years, a longer, well, 12 years total. So more than twice. What the, yeah, the five year was the, and and get this. This is even more interesting. So again, that’s maybe another podcast uh on medical mistakes, but my mom would have lived even longer, who knows how much. Um But cause she was in the hospital for a little touch of some congestive heart failure that she was recovering from and about to be sent home.

But anyway, I won’t give you all the details, but she ended up getting a wrong surgery. A, a procedure, not a major, not a major surgery. Kind of a, see, a procedure that wasn’t that serious. Anyway, long story short is the doctor did the wrong surgery in the wrong place which led to an infection which led to sepsis, which killed her. And if she had not done this, this mistake and it was clearly a medical mistake. If that had not happened, she might have lived, you know, who knows how long after which again that happened.

Five years, I mean, yeah, we blew the five years away. So it reminds me of it is a horrible thing. But, and yeah, I don’t want to take away the win, which is like you went in with a mission and you, uh, um, achieve that mission. And I almost feel like, do you remember the movie Pretty Woman where she like goes into the store and because she wanted to spend all this money and they didn’t want her and she said she goes back with all the bags and says big mistake, big mistake.

I almost want you to like go back to that doctor and be like, look at this big mistake here. Look at all this years and all these photos and memories. Well, yeah, I I as my background is Sicilian. I don’t think I want to see that doctor for his sake. Who says that first of all, like you are already, you know, dementia is not a death sentence. There are many examples your mom’s included of like people who have lived a very long and happy life after a diagnosis, right?

Oh, yeah. Yeah. No, it was happy. She was happy, no doubt about it. You could see in her face she would dance with our caregivers and, and just smile and we had fun together and we go out on our outings. So yeah. No, she was, she was happy but, but because we created the right environment for her and did the right things and, and gave her nutrition and, and, and, and, you know, little things like, I mean, this is another interesting thing because I’ve heard people tell me because I’ve been some, you know, Alzheimer’s support group and I’m also on the board of UC I mind and stuff.

So, so they, they people have said I didn’t know you can get all these services at home. I said, yeah, we had physical, we had physical therapy come for my mom every week for many years. That, that was quote unquote preventative. Did you ask for it? Did you have to ask for it? You have to advocate for it. Like, I mean, I find that they’re not going to be like, oh, your person needs physical, but if you ask for it then it’s like I did that recently with my brother.

I’m like, he’s got sciatica this and that. Oh, yeah. We can write him a PT. Oh, yeah. Yeah, definitely. And, and the person that we used, um, came to our house every week and sometimes twice a week for years and years figured out how to, you know, I’m sure he was honest, but figure out how to get Medicare to pay and, and, and it was so important to her, continue to walk because she walked to the very end and a lot of that doesn’t happen with a lot of Alzheimer’s patients.

They end up being bedridden or wheelchair ridden. And that was not the case she could with a walker for safety, she could walk until the very end of her life because I think of this all this physical therapy to keep her strength, strong and active and, and all that can be done at home. You don’t have to be in a facility. Uh, I had, we had speech therapy come in the beginning when starting to lose her speech. Didn’t, didn’t solve it. But we tried and we had the dentist come to the house, uh, mobile dentist they’re out there, um, everything is out there people, like, really?

Now that’s probably not, but you had to pay out of pocket for the dentist likely. And, um, they took dental insurance. Yeah. Yeah. Well, she, yeah, I had some dental insurance for her paid. So that, I mean, yeah, so all these things can be done, most of them are paid for. But, and, you know, hair cutter. No, that’s not paid for by Medicare, of course, but almost everything speech, physical therapy, nurses can come to your house, doctors even there doctors that come to your house. Now uh you have to find them, but there are some great doctors that are mobile and so with all those things, you don’t have to, you don’t have to be um in a facility to get amazing services that extend people’s lives and health and happiness.

So yeah, I mean, you were aging in place is kind of, you know, the key, the key term there and then while you’re doing all of this mark and you’re I love the term care leader, you your mom’s care leader. Um How, you know, how are you not losing yourself? Like how, what are you doing to help your own health and happiness? Well, it’s kind of, I I think of these things. It’s a great question and really important because one of the one of the foundations of care leadership.

Yeah, I’m I we can talk about a little later but I’m writing a book about this. But one of them is the first pillar is self-care. Because if you don’t, if you’re not sharp, healthy and, and excited about being a care leader, you’re not gonna do a great job and your loved one will probably not live longer and happier. So that’s number one. And so I think of that in two categories, I think of internal re energizers or renews and external re reenergize or renew for the care caregiver.

So, on the, yeah, what were yours? I’m curious on the internal side, I, I really tapped into this mission and this passion and, and I, you know, I come from uh again, sort of my, my grandparents both were Sicilian. They came as immigrants to this country, as kids. My grandfather came over to this country when he was 12 years old on a boat all by himself to make good life for his family. And I keep thinking if he could do that, then I can do this. I mean, right, you come from strong leader.

Yeah, if that, if people make that much of a sacrifice at 12 years old, this should be a piece of cakes. Um And then I think about that and I think about the mission and how much my mom did. So that’s an internal motivator and one of them, the other one is my faith. Um You know, I, I prayed a lot and, and, you know, called on, you know, God to help me. And I thought, and there’s a great book, um, called Holy Moments, um, which is, which is interesting.

It’s not about caregiving particularly, but it’s about just getting in touch with, um, you know, kind of a holy moment that sort of captures your energy and imagination. And I had many of those with my mom. It’s like when she would smile, I would like, this is all worth it. This is all worth it. You know. And, and so I would like, those are internal things that it would keep me energized and motivated externally. You know, there I went to a therapist um pretty regularly during this journey to help me, you know, kind of process this and, and help, you know, kind of keep me grounded.

I did that. Um, when I had time I would go for, I would at least once a day I go for a short walk around the block just to keep physically ex, you know, exercise. I would also, I knew important was social connection. So I would, you know, call a friend pretty regularly and they were so supportive and just so I had a sort of external re energizers as well as these internal reenergised. And I think that kept me, kept me focused and kept me positive. Um There’s a great concept around this, that, that I think is important.

It’s called and a guy named Larry Sen, he’s a leadership writer guru, he has a concept called the Mood Mood elevator. Um And basically you gotta check your mood. If your mood is kind of in the lower, lower rungs of the of the elevated, lower buttons, like you’re kind of down depressed, you’re blaming other people for things or so why am I, why is this happening to me? Then you’re not going to be a great c leader. Um But if you’re higher on the elevator and you things, you know, folk and you’re capturing.

So I’m grateful for this opportunity. Um You know, excited about what I, what I can do for my mom. You know, those are high in the mood elevator. You’re gonna be a much better leader even this and I’ve accepted it like that is a, that is a intention. Yeah. So if you can, if you kind of do a gut check and say, oh, you know, I’m kind of down in the dumps about this. Um You know, what was me, then you got to do something to reenergize yourself with external elevate to get a higher mood elevator for your own health and happiness, but more importantly, even for the person you’re caring for.

So, yeah, because it’s a partnership. It’s like you’re, yeah, it’s a lot of things that I love that you’re putting all your wisdom in a, in a book. Tell us about your book. Well, yeah, it’s like, it’s so funny after um if my mom passed, you know, as people know who’ve had their loved one pass, your brain is spinning and you’re just anyway. So I was like, ok, I gotta, gotta get focused on something here and I didn’t think I want to go back to work quite yet.

And so I thought once you leave, it’s hard to go back to the corporate world. Yeah. And it was like, I’m gonna, you know, I got a mission now I have two missions after my mom passed. One is Alzheimer’s support and help, helping others who are going through this journey. And the second is this medical mistake thing. It’s like I’m gonna try to, you know, get involved with trying to help people who are victims of medical negligence. So those are my kind of are there agencies for that?

Like if somebody’s got like issues just to because we mentioned it. Is there something I should link to? Um It’s a good question. Mm I can’t think of any of the group I was kind of got connected with was the consumer watchdog group. They have chapters all over the country, but there’s an L A chapter that I linked up with and I’m working with some folks there who are kind of full time employees to advocate in Sacramento, which is California’s um capital to help legislators change the laws around this to make. Right. Right.

Uh Again, this is another whole podcast, but right now, there’s not a lot of accountability to, to doctors and hospitals for medical mistakes. And there’s a lot of reasons for that. But I’m trying to help this group change laws in California around that. We’ve had some more and even in a couple of quick years we’ve had some successes to change some things about that. But it’s got a long way to go before it’s doctors were really in, in hospitals will feel really accountable legally and financially for mistakes.

They make it not where it needs to be yet. But yeah, yeah. So I’m kind of, so those are the two kind of missions that I have Alzheimer’s support and helping with medical negligence. Um But anyway, so, yeah, so I did some podcasts um for UC I mind which I was connected with um through my mom’s care. I just happened to know the director. And anyway, I was telling, talking to her one day and she said, well, you know, you’re doing some interesting things for your mom.

Why don’t you, do we have this podcast series at University of California, Irvine UC, I Mind Center. And I said, ok, anyway, I did these couple of these podcasts for them and people came out of the woodwork saying you got some amazing ideas. Mark once you write a book and I thought a book, I didn’t learn how to write a book. So anyway, I start one day just like two years ago, you are an aggressive learner. So Yeah. And somebody gave me this. Right. Yeah. So, like, so I just sat at my computer one day and just, like, started writing and then a little bit more the next day anyway, you know, six months later I had a book.

It was, it therapeutic for you. It was really therapeutic. I mean, I got a lot of, it’s like, it sort of went back and forth between. This is, this is interesting. Uh, I did a lot of amazing things. I should feel good about myself, um, to, oh my God, I miss my mom and it’s like all kinds of things and then, and then this is gonna help people. I think it’s like, so anyway, I finished this book and now I’m in the process of working to get it published and I have an agent that’s helping me find publishers and stuff.

So it’s got a ways to go before it’s out there. But yes, it’s been and it’s, yeah, it’s, it’s on the path. It’s so exciting that’s edited and all that. Now, I just need somebody to publish it. So when it does get published, we, we’ll just let me know and we’ll update the show notes. This, you know, the great thing about podcasts is people find them at various points in their life. And so maybe the book has been published by the time they’re listening to this and we can, um, indefinitely and I, I’m excited about it because it’s like the whole, it’s a combination of sort of a handbook how to, based on my experience.

And it’s also a personal Alzheimer’s journey story. But you know, about my mom’s background, the Sicilian thing and then who my mom was and all the, you know, all the, you know, all the angst about it. And, and this, the last section of the book is all about this hospital stay with his medical malpractice. And, and, and, and I ended up, this is during COVID kind of the first big wave of COVID. And I figured out how to nobody was allowed in the hospital during this time.

And I through my sister’s um push pushiness, which she did, she did originally, you know, got my mom diagnosed, she figured out how to push somebody to get us into the hospital. And I, I was, I was in the hospital for the month that my mom was in the hospital with all these problems and nobody else was in the hospital. There was no guests at all loud and I was like a rock star in the hospital all by myself. It matters, it matters. So we have a, we had a show where a woman, Mary Daniels became a dishwasher to see her husband in a care facility, uh you know, care community.

Yeah, back during COVID. But there is an act, by the way on the Table, the Caregivers Act in the House and Senate right now. That we’re trying to get, you know, to advocate for, for this very type of thing that there’s a primary person that’s allowed access of the reasons why. So I will link to that in the show notes too that so people can learn. And then another thing I wanted to mention is when you get your book published, don’t forget about all’s authors. You are definitely could, could be a candidate to be a part of all’s authors, which is where a community of dementia Alzheimer’s related and they have a podcast as well.

So you, oh, I love, I love their podcast. I’ve listened to them. They’re great. They’re a fellow whole care network podcaster. So tight, tight with those ladies. I love them. So thank you for reminding me. Yeah, that’s great. So, yeah. So I’m excited about the book and, and the experience and yeah, so it’s like it’s a journey helping people with Alzheimer’s support, but I love it. Its very fulfilling. You’re, you’re de definitely mission driven and it’s, it’s paying off and I think it’s making you happy and healthier in that, in that process.

So I appreciate you sharing all that on the self care notes. Let’s let’s get your thoughts on some of the prompts in the journal. So first question I have for you, Mark is, it says on one side of the page, it says what’s one habit that you’re trying to subtract from your life? But then, then the other one, it’s one habit you’re trying to add to your life. So, is there a habit that you’re trying to subtract or add? Uh, let’s see. Well, I’m, you know, being a Sicilian, I’m addicted to Italian pastries and gelato.

So, a lemon gelato, please. That’s my favorite. So I’ve gotta, I’ve gotta, um, kind of work on that. That’s a subtract so I can stay healthy. Um, or in moderation. Maybe just the child cup size like your mama had sprinklers. Yeah. Yeah. So, so that’s kind of it. I would say just, you know, stay healthy and I can get addicted to sweets pretty easily. So what does self care look like for you? Now, I’m just curious like, well, it’s interesting cause you know, those of you, those are the listeners who’ve been through, you know, a loved one dying and especially since my mom and I were so close.

Um It’s still hard. It’s been three years and yet it’s still hard. And so trying to stay active with Alzheimer’s support and doing all this work and, and then also just sort of taking baby steps to all the things that I couldn’t do when you take care of a loved one full time for 12 years. I didn’t travel at all. No vacation. So um I’m traveling again. I’ve been to Italy twice in the last three years. Um um Hawaii. So I’m doing a lot more travel. Uh my sister and I both cause we both sacrificed quite a bit.

So we, we’re traveling now and I’m trying to resurrect the social life. Um I’m, I’m a single guy and it’s like dating again. Oh my God. What’s that? Like we’re starting to date again and it’s just, just getting back to, you know, living life and celebrating all the wonderful things and as much as our, you know, as our grief slowly gets, you know, withers a little bit. So I may always be there, but it’s not as severe as it was in the beginning. Yeah. Well, yes. Good for you for kind of recognizing all of that.

And life after caregiving is definitely a stage of caregiving. You know, it’s got its own things and it’s, you know, the grief never really ends. I feel like it’s 10 years almost since my dad passed and it just is kind of like found a little cozy space in my body. Like it’s not, it’s just part of who I am now and it’s, you know, I can definitely leak and flare up too. So, what’s the last great book or the last book that you read that you’d recommend? It?

Sounds like you’re a big reader. Yeah. Well, I’ll give you two titles that are excellent that are connected to this topic. Um One is um Atomic Habits by James Clear, which is a big time best seller. It actually influenced me a lot with my strategy with my mom. Because his book is all about how many, many little things can add up to something. It’s like that ripple effect. I’ve read, I’ve read the book. I, I recommend it as well. Yeah. I mean, the idea is like, you know, ok, I mean, his analogy is, you know, you put grains of sand, keep adding grains of sand and, you know, eventually, you know, things topple over like my mom’s car is the same thing.

You know, there is no cure for Alzheimer’s. We know that no silver bullet. But all these things I try with her nutrition and supplements and exercise and stimulation, art, all I think added little grains of sand to help her live a lot longer and happier and great to sand for you too. Like those little self care things that you were doing for you have that effect. What’s the other book? The other book is called Sensitive and it’s by Grandman and Solo. Um the two authors and it’s about highly, highly responsive or highly sensitive people and they talk about it.

It’s very, very interesting book. They talk about three characteristics that are really important. Um And I I look for the, I read the book, I look for those in my caregivers too. The three, the three things are uh highly creative uh high, highly sensitive people are highly creative, highly compassionate, empathetic and they are sensory, they’re I tuned into the sensory observation kinda. And I, and those three, I figured out those three things are very important and amazing superstar caregivers. So one is you want, you want somebody to be creative?

And I found these people with kind of interesting games and creative exercises with my mom and, and all that you want them to be empathetic and compassionate because that’s how you can connect. My mom couldn’t talk. So they had to figure out how to communicate and you can only do that by being really a good listener, very empathetic, compassionate with my mom. And so that was something that was important. And then sensory observation is interestingly very important. Uh beca too because you think about it. You want somebody caregiving for your loved one that is tuned into observing them and changes in them, you know?

Ok, something looks, something looks off mark. Yeah, I think they, they’re not feeling well or something’s off with them, you know, and they observe those things and doctors too. Again, my extend, we didn’t talk much about that, but the extended care team is doctors and physicians and others. And you want your doctor to be tuned in to observations about your loved one in a medical world and you want them to be creative in their care. And I can give you interesting book, has some examples about a creative approach to medical care that worked.

Um Yeah, I’m gonna definitely check it out and we’ll, of course, we’re gonna link to this and all the other resources that you’ve shared. Yeah, I would suggest those two books. So, Sensitivity by Graham and Solo and then Atomic Habits are just books and they do connect with caregiving a little, you know, a little bit of caregiving is life. Yes. And yeah, and you’re a care leader. So you got to let you leading, leading. Oh, it’s, I mean, such good wisdom and insights mark. I really appreciate, you know, everything that you’ve shared today.

And um you, I, I, you know, I can see how you people got really connected to the mission like and, and connected to your mission now. So um that’s got very magnetic and it comes across in your, in our conversation. Is there anything so anything else that you were like, oh man, we can’t wrap this up without saying this and then, or, and, or like how do people get in touch with you if they want, if they want to reach out? Yeah, well, get in touch with me.

I’m on linkedin. Um So just kind of reach out, there’s probably a lot of Mark Wilson, you know, I’ll link to it, I’ll link to it. Oh Yeah. OK. And then just look for Newport Beach is where I live and you’ll see Taco Bell sort of on the, you know, on the uh profile. But yeah, link linkedin is the best way to reach me, reach me. I love to connect with people and then the last thing I would say is um there are caregivers out there that are listening, I’m sure uh that are struggling with their role.

Um Just, I’m kind of getting a little sentimental. So I would say no, it’s all good. Just uh just don’t uh just don’t give up what you’re doing is so important. Um And, and especially if you’re doing this at home. I know a lot of people for good reason, put their love in a facility. But if you’re doing this at home, it’s e extra hard and extra important, but it’s worth it because there’s, there’s nothing like this. You, you are helping your loved one in their biggest uh moment of need in their entire life.

They need you now more than ever and you can make a huge difference, just stay focused, get, get the help you need for your own care and, and maybe direct care for your loved one too, but just get the help you need. Um And just know you’re doing the right thing and it’s worth the energy and effort and you’ll be grateful and they’ll be grateful. Amazing. They, they may not be able to tell you how grateful they are because of the dementia, but they are. I I know that so. Yeah. Yeah.

Well, said Mark, thank you so much for coming on the show today and sharing all of this with everybody. Thank you so much Elizabeth. I appreciate being here. Thank you. 

Hello, podcast listener. If you’re caring for a loved one with Alzheimer’s or dementia, you don’t want to miss all’s authors podcast. Untangling Alzheimer’s and Dementia. I’m your host, Mary Anne Shuo, a registered nurse author and dementia daughter. In each episode, I interview one of our 300 plus authors about their personal dementia story and why they chose to write about it, sharing intimate details and painfully obtained not to help you on your own journey.

We share a variety of stories across all diagnoses and from a range of caregiving experiences, you can find us on your favorite podcast platform on the whole care network. Remember you are not alone, one can sing a lonely song, but we chose to form a choir and create harmony. Find us at all. Authors.com. See you soon.

Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole care network. As always show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com.

Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue.

Maybe while you’re subscribing, consider leaving a five star rating and review or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as Happy healthy caregiver. And until we meet again, please take care of you.

This is the whole care network helping you tell your story, one podcast at a time.