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Happy Healthy Caregiver Podcast, Episode 172: New Perspectives from Caregiving with Matt Perrin

Matt Perrin spent eight and a half years surrounded by dementia as a member of the sandwich generation. He was caring for his mother, Rosemary, who was living with Alzheimer’s Disease. And, simultaneously helping his wife Lindsay care for her father, Steve, who was living with Lewy Body Dementia. Steve lived in Matt and Lindsay’s home along with their three girls and their dog. Matt’s lived experience gave him new professional purpose and unlocked a passion for creating that he never knew he had. He found solace in writing and continues his practice with his popular weekly email series.

In this episode, we discuss unearned caregiver guilt, win/win perspectives, social connections that led to being in a documentary, and new career paths inspired by caregiving.

Scroll to the bottom of this page to see the full-show transcription.

 

Episode Sponsor – Rare Patient Voice

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Words of Encouragement

Each episode starts with a few words of inspiration or motivation from the Happy Healthy Caregiver Jar. Create your jar by downloading the Caregiver  Jar inserts.  Enhance your jar with the Caregiver Jar refill pack.Caregiver Jar Inserts PDF

‘A champion is defined not by their wins but by how they can recover when they fall.’ —Serena Williams #CaregiverJar

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Links & Resources Mentioned

 

Love and Other Consolation Prizes by Jamie Ford

 

Happy Healthy Caregiver Podcast. Episode 130: Teepa Snow - Communicating with Persons with Dementia & Developmental Disabilities

Happy Healthy Caregiver Podcast, Episode 20: Choosing the Right Assisted Living Facility

 

Just for you a daily self care journal book cover

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Favorite moments & quotes from the episode

‘‘Squeezed’ would be a word that comes to mind for that period in our life. It was exhausting, wonderful – all of it. And my perspective on that time has changed and keeps changing since our caregiving ended.’ – Matt Perrin…

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‘I found, for me, when I was thinking about all the tasks that I had to do, I was missing stuff…those true, real moments. If I wasn’t present, I’d miss them.’ – Matt Perrin #stayingpresent #caregiving

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‘Caregiving gave me this newfound perspective on life in general. It gave me this need to focus on what’s important to me. It gave me a passion to do what I can do to support others going through a caregiving experience.’ – Matt…

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Full Transcription

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.

But it was realizations like the one I was just talking about around the guilt and that I wasn’t a failure. I was doing the best that I could, right? There’s there, there is nobody that can do all of that. That perfect caregiver is a myth.

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. Each episode has an accompanying show notes page. So if you’d like more details about the topics, products and resources we speak about, you’ll find the show notes by going on the website happy healthy caregiver dot com. And underneath the podcast menu, click the image or episode number for today’s show.

If you’re listening on your favorite podcast platform, the show note link is in your podcast episode description, join the Happy Healthy caregiver email list to stay up to date on all podcast happenings every Tuesday, you’ll get the weekly roundup, which includes tips under the pillars of happy healthy and caregiving, plus upcoming events, special offers and more. Go to bit dot Lee forward slash hh ce news for today’s segment of what I’m reading. I read a book when I was on vacation recently called Love and Other Consolation Prizes by Jamie Ford.

Now, Jamie Ford is the best selling author of another book called Hotel On The Corner of Bitter and Sweet. And I actually never read that one. But this one was inspired by a true story about a boy whose life is transformed at Seattle’s epic 1909 World’s Fair. I gave this four out of five star review on goodreads because I said it had great characters in this book who try to make the best of their unfortunate hands that they’re dealt with. The book flips between 1960 1910 eras, historical fiction about Seattle World Fair, Red Light District and women’s rights.

It’s not a change your life kind of book, but a story that hooked me in to find out how they all got from here to there. So I will link to that book in the show notes and I’ll also link to my good weeds profile if you’d like to check that out. My favorite thing this week. It’s very fitting because I’m gonna be talking to my guest today, Matt Perin and I really enjoy his three thing Thursday email. It’s his newsletter that he writes every Thursday and he’s gonna talk in the show about how writing was important to him.

But he spent, you know, eight years surrounded by Alzheimer’s disease on one side and Louis bought a dimension on the other with his wife’s father. And he says that he’s an expert in nothing but his own lived experience, caring for people that he loved. And that experience has stuck with him and is worth sharing. And so he sends out an email per week and it makes him sit down and, and write, which is something that he still does. He writes about the three things he’s thinking about doing loving or hating this caregiving week.

So a link to the three things Thursday email in the show notes page before we get into today’s caregiver spotlight episode. I want to first shine the light on our episode. Sponsor Rare Patient Voice. If you want to earn cash in exchange for your opinion, Rare Patient voice or R PV helps connect researchers with the patients and the family caregivers for over 700 diseases and conditions for patients and care. R PV provides you the opportunity to voice your opinions to improve medical products and services while earning cash rewards.

Rare patient voice helps patients and caregivers share their voices if you’re interested, join the R PV panel at rare patient voice dot com forward slash happy healthy caregiver. Let’s meet today’s caregiver in the spotlight. Matt Perin Matt parents spent 8.5 years surrounded by dementia as a member of the sandwich generation. He was caring for his mother, rosemary who was living with Alzheimer’s disease and simultaneously helping his wife Lindsay care for her father, Steve, who was living with Louie body dementia. Steve moved in with Matt and Lindsay in their home along with their three girls and their dog.

Matt’s lived experience gave him new professional purpose and unlocked a passion for creating that he never knew he had, he found solace in writing and continues his practice with his popular weekly email series. In this episode, we discuss unearned caregiver guilt win, win perspectives, social connections that led to being in a documentary and new career paths inspired by caregiving. Enjoy the show. Welcome, Matt to the Happy Healthy Caregiver podcast. Hey, Elizabeth. Thanks for having me. Glad to be here. Yeah. I’m delighted to get to talk to you and a fun little fact, you won’t know this until because I haven’t recorded the intro yet, but I’m planning to put your uh three things Thursday and as my favorite thing of this episode because I don’t read a lot of caregiving emails, Matt because I get kind of inundated with all them.

But I religiously and always read yours. Maybe not on Thursday, but it’s not going to get out of my inbox until I check it out. Oh, well, I’m glad to hear that. Thank you gonna make me blush over here. Uh, no, that’s awesome to hear. Yeah. Sometimes you just like, I know I put these newsletters together too on my end and you’re like, I don’t know if anybody’s reading these things. I don’t know if anybody’s, you know, checking these things out, but we do it because part of it is I think Cathartic for us, uh, to hopefully make it a little bit easier for someone else who’s going through this Caregiving journey.

So that, and I just feel seen, I think is, is mostly, and I think you’re making a lot of caregivers feel seen. So we’ll definitely see. And I’ve already shared, but I’ll share it again on how they can subscribe and even look at past episodes or not episodes, past newsletter archives that you have. But you’re consistent, you’re always doing it, which isn’t easy. It’s not. No, it’s, but it’s become a habit. So I totally agree. 100% on. I started um writing uh just out of it was purely cathartic for me and uh people started reading it.

So I keep doing it for, for me and the readers. Um Thanks for the mention and it makes it not feel like it was off or not like this, like, you know, huge, rough patchy, yucky and in some ways beautiful season of our life uh that it can benefit somebody else. OK. Well, let’s um we always kick off from the happy healthy caregiver jar. I’ve got some hopefully words of inspiration in here that and people can, these PDF S are available on my website and in fact, somebody just said, I didn’t know there was an insert.

So there’s an insert um that you can get more if this is some, if this is your jam, if you like words of affirmation and things, which is something that speaks to me. So you’re for your episode, Matt, it says a champion is defined not by their wins but how they can recover when they fall. And that’s from actually Serena Williams said that I uh I love it. Um Good team all Right. And I happen to have married into a big tennis family. So I love, uh, I love that, that, that, that’s a serena quote.

So, yes. Have you transitioned to pickleball or is this like, that’s a loaded, that’s a loaded question. No, I wouldn’t say we’re anti pickleball. Uh, and no, haven’t made the, haven’t made the transition yet occasionally and it’s a lot of fun. So it’s something that my husband and I have been playing. In fact, we are just, we made a bit not more than we can chew, but we signed up for a winter winter alta league here in Georgia on Saturday afternoon. So hopefully it won’t be too chilly.

But, uh, yeah, I like that. It just is something we can do together and it keeps us moving and it’s, in addition to the things that I’m already doing activity wise, it didn’t necessarily replace something. So that’s fine. Yeah, the question is, do you and your husband play together? We do as a team or against each other. We’ll see in alta how they, how they do it. I don’t know if it’s mixed doubles or if it’s women and men like the women and men on the team.

When we practice, we play together and sometimes he, he can kind of get the vibe from me on whether or not I, I want coaching or not. He’s definitely better than me. Like he’s an athlete, but I hold my own I’m, I’m not, I’m not horrible. Um, from the other women’s perspective, I would say I’m above average that of the folks that we have played with. Um, but he, he has no qualms of just, like, beaming me in the chest or anything. But it’s funny the other guys will kind of look at him and be like, whoa, like he hits his wife with the ball and I’m like, yeah, that’s, that’s kind of how we roll.

So, yeah, and it makes me better. Right? I don’t want to get hit. It’s, yeah, it’s a plastic football ball. Like it’s not terribly, uh, terribly hard, but he, he’s making me better. That’s how I phrase it or he’s just getting at his marital frustrations after 13 years, which is understandable too. Well, speaking of marriage and family frustrations and all of that, like, give us a little bit about your, your caregiving story with you and your, that you and your wife kind of went through and what that looked like for you all. Yeah.

Um, happy to do that. So my, um, the headline is my wife and I each became a caregiver to one of our parents around roughly the same time. So, um, my, I’m an only child. Uh, my dad died when I was, I was younger. Um, so my mom was, uh, living alone about three hours away from, from where we live up up here in New Hampshire. And, um, started noticing changes and turned out, uh she was living with Alzheimer’s disease and that, you know, was a 8.5, almost nine year journey uh for my mom with, with Alzheimer’s and uh she passed away back in um April of 2022.

So, uh and around the same time that um we were, I guess having these discoveries with my mom, uh my father in law Steve um was, you know, we were learning that, that he was living with Lewy body dementia. So, um and you know, my wife and her siblings, um uh you know, lots of other things were going on at that point. Uh We lost my mother-in-law um early on in that process um due to pancreatic cancer and, you know, that made, of course, uh my wife Lindsay and, and her siblings, uh their dad’s person and uh you know, as, as um family dynamics often shake out in a caregiving situation.

Um You know, it was determined that my wife Lindsay would be sort of the primary uh primary caregiver uh for my father in law Steve. And um yeah, I mean, that’s the, the headline we, we walked that journey. Um It really from almost starting at the same time within a couple of months of each other. Uh to, you know, my father in law passed away in October of 21 I guess it would be at this point. So, um you know, 78 months before my mom. But, uh, and in with you, right.

Father in law Steve, he did. Yeah. Initially, um, there were sort of a few phases as there often is. Um, you know, we try, we have Lindsay and I have, have three girls, um, who back then were in middle and elementary school. Um, I guess all elementary school, uh, now that I think about it but, uh, you know, young family, busy house, um all of that. So our, our, our first thought with my father in law was um was, was getting trying to get him into a supportive environment such as assisted living that um that was, that was close by um by our home.

But uh gave us a little bit of separation and, and more importantly, gave, gave ST the, the sort of um uh you know, not just the help that he needed throughout the day, but sort of the engagement and, and sort of um you know, the, the, the, the activity of being in a communal living situation and that worked for a little bit. Um And then it didn’t, it doesn’t. Right. Exactly which, you know, all about and anybody that’s been in a caregiving situation does um Nothing, nothing is uh nothing’s forever.

So we did. Yeah, we wound up um you know, moving Steve into our home and um it wasn’t, you know, it was a wonderful experience looking back on it now, you know, obviously it was, um, you know, a life change, you know, the biggest life change we had experienced to that point, um, after having our Children and, uh, but we made it work and it was, uh all the, all it was all the adjectives, you know, it was, it was wonderful. Um, it was really, really hard at times, um, you know, and everything in between.

So, uh we had that going on at home and then, uh all the while my mom in uh in assisted living down in, uh you know, in Massachusetts, about three hours from our home here in New Hampshire. So a lot, it’s, I mean, and I, I can resonate with parts of your story because my husband Jason and I were simultaneously sandwich generation caregivers. Um How do you, how do you describe that time of your life? Like when you guys are both kind of all over the place?

You’ve got the kids, you’ve got the job, you’ve got the like, ho how do you describe it to people? Um You know, i it’s a good question. Uh Well, it as a, a little bit of an aside but, you know, to, to give some sort of answer, I saw something recently in the last couple of weeks on the internet where someone was talking about um how it should be really, you should really be called the Panini generation because you’re squeezed in the middle. Um squeezed would be a word that would come to mind, uh, you know, for that period in our life.

Um, uh, yeah, it was just, uh, exhausting, uh, wonderful all of it. Right. Um, you know, the, and, and sort of my perspective on that time has changed and keeps changing, you know, um, since, since our caregiving ended. So, um, what do you think your girls took from it is, you know, it’s, it’s interesting to get their perspectives on. Yeah, that’s, that’s AAA question. I really wish I had an answer to, um, because Lindsay and I still talk about, uh, sort of the, the impact of, of that period of time.

Um, you know, and we’ve, we’ve, as every family does, we just happen to experience a lot of loss in addition to, um, in, in addition to the, the, you know, our caregiving years. Um, so, I don’t know, I mean, I, I hope they took from it, um, uh, you know, the, the, the example of, uh, being there for your people, um, through it all, I guess that’s kind of obvious. Um, that’s, that’s my hope. Right. I, I, but, you know, we, we often wonder, um, what sort of impact it’s all had on that, you know, and never, never really get, uh, you know, so you yet to be determined, I guess is the, uh, is the answer.

But, yeah. Yeah, it’s, it’s, I mean, I know for me, I felt like guilty that I couldn’t be doing like, there, you just really, there’s just not enough for you to, to go around and adequately like max out everybody’s needs. Like there’s just not, you’re a one human person and even, even when there’s both of you being pulled in a million directions. So it’s, um, you know, I’ve talked before about how I felt like it was like feeding a nest of hungry birds. Like it just as this parent or as this main role in this caregiving and world life nest, everybody needs something from you.

Uh, and, and it’s hard to discern like whose needs outweigh someone else’s in that day. There’s really not a balance. It’s like a, it’s, it’s like who’s screaming the loudest and is it really valid that they’re screaming the loudest? Because I know sometimes my mom could be screaming the loudest, but it was because her wi fi couldn’t work and she couldn’t get to her, you know, her digital book and I’m like, ok, not, not the biggest problem today. Uh, so you hold on that. We’ll work on that.

Uh, but it is, there’s a lot of management involved and emotionally too. Yeah. The guilt, the guilt was, that’s a really, that’s a good one too. Um, I’m, I’m really thankful. Uh, we, we were thanks to Lindsay. Really. Um, we were pretty proactive in trying to find solutions. Um, and whether that was talking to our own doctors, talking to our parents doctors, um, you know, for advice on, on resources or, or where to go or, you know, um how to manage X or Y or Z. Um Thanks to Lindsay’s proactive nature there.

Um You know, we, at least I learned pretty quickly that uh a lot of that guilt um was unearned and I, I needed to let it go because it was unearned. Um And, and I’m really, really thankful for that because that, that lesson or that realization is probably a better word that came at a time when it, I was just, you know, all that guilt that you’re talking about Elizabeth, I was so weighed down by it. Um It was, it was consuming me and, you know, attached to the guilt was this just pervasive feeling of failure.

I just because I, I was, we were trying to do all the stuff and I felt like I wasn’t any good at any of it at that point. So it just so anyway, realize it’s a no win situation really. Yeah. Or a win, win, right? It depends on your perspective and it became less of a no win and more of a win win as time went on. And I sort of uh learned the skills um that would help me sort of keep the perspective that I needed.

Do you get that win, win perspective? Like what, what do you, what would you tell someone now? Um That’s what would I tell someone now? I don’t, I I don’t feel qualified to tell anyone anything other than what my experience was. And uh because I’m not, I’m only, that’s what I’m an ex expert in my lived experience. Um But it was realizations like the one I was just talking about around the guilt and that um II I wasn’t AAA failure. Um I was doing the best that I could. Right.

There’s, there, there is nobody that can do all of that. Um And never mind sandwich generation, there’s nobody that can do all of what’s required to care for one other person. Um It’s just that, that, that perfect caregiver is a myth. I feel like. Um so it was a collection of realizations around and sort of in that lane that helped me um helped me realize that, that uh it helped me, it got me closer to the perspective that I I needed. And the other other key pieces of that were um finding ways to figure out what was most important.

Um And, you know, for us that, you know, I always used to talk about like our caregiving scoreboard, scoreboard was uh my mom or my father-in-law’s demeanor, like their smiles, their laughter. Um You know, in my father-in-law’s case, like an extended period of eye contact that told me that he was with me. We were, he was, he was present, he was enjoying, he was engaged in the con like those little things they all add up. Um or they all added up for, for us. And, um, you know, over time I learned that what was most important was that scoreboard?

Like our mom and Steve Happy, like, are they, have they smiled today? Um, have we had any of those little, uh, flashes of eye contact, um, you know, at the points when they became non verbal, um, or, or largely non verbal, like, had we had any quips from them, like my father in law was such a wonderful funny, witty, dry sense of humor guy. And um even when, you know, towards the end, when he was largely not verbal uh from a communication standpoint, you know, he would still occasionally give us one of his, his sort of patented quips, you know, like those were the things that we were.

Um once we got there, right, as caregivers, like those were the things that were driving us. It was less about like, oh gotta keep mom safe or Steve safe. Um Can’t let them do this or that, you know, it was less about that stuff and of course, their safety was important. But um it just, you know, over time, thank thankful, you know, thanks to advice and perspective from a lot of people, professionals, people who had been through it likewise, you know, they helped us see that um they, they helped us sort of hone in on what was most important for us and it was all that stuff.

So, and that’s, that, that’s what I’m kind of talking about when I think of like, win, win. Um, because I, I found for me if I weren’t, if I, when I, when I wasn’t, when I was, when I wasn’t focused on that stuff and I was thinking about all the tasks that I had to do. Um, I was missing stuff. Right. Like one of those moments that I’m talking about with my father and I like they, they happen really quick. Um And it’s a few seconds but uh you know, the impact that, that like just that those memories are still with me.

Like that’s what I remember most. Now on this side of it is those funny, just true real moments. Um And I, you know, if I was focused on all the, all the tasks and to, to do s and all that sort of stuff, I, I wasn’t, uh it sounds cliche but I wasn’t present, right? I wasn’t, I’d miss him. Um So that’s important I think, you know, it, it can be a co coping mechanism to not have to feel the feels and also to, to your point not live in the present just by doing, doing, doing in line of feeling like you’re on a treadmill or a hamster wheel, which is how I kind of felt when I would describe like the sandwich generation of when we were both in it and, and then you do kind of get to that point.

I think where you’re like, ok, this is my life. Like I need to kind of figure out how to get, how to slow this treadmill down and how to, how to and you know, stop and smell the roses per se. But it does take a intentional switch. I think like a little acceptance and a intention is kind of the best way I can phrase it where I could have just kept going and going and going. And I probably, you know, my health would have continued to decline my physical and my mental health.

Uh But that was also like an intentional switch too is like, oh, wait, if I keep doing this, I’m headed down, you know, Tipa says off the cliff, like you’re just gonna head off the cliff, like don’t do that. Um And so I appreciate that that stuck with you. Do you think it has a lasting impact on how you live your life today? For sure. Absolutely. Um Yeah. Yeah. Yeah. And the one other thing I would say is um just going back to what we were talking about a second ago, like, it’s different for everyone, you know, and, and my, my Lindsay, my wife was, she had an entirely different approach and she wrote this, you know, she also uh would write at times and it was Cathartic and she wrote this, um this, this uh blog post article, uh whatever you wanna call it about.

Uh, a trip to the dentist where, because she was always avoiding and distracting herself. Right. And, and she was, she was focused on, you know, her dad’s happiness and fulfillment and purpose and all of those things. But she just like her mechanism was to, you know, not get down into the weeds, stay focused on that, but, like, avoid the fact that, you know, um, in her words, she had two dads. Right. You know, she had, you know, her real dad and, and her dad that was sort of under this heavy cloak of, of Louis body dementia as time went on.

Um But anyway, it just every whatever for you, which is why we do this podcast, right? It’s like I just didn’t want me to be the one that’s talking all the time. I think people need to try on different things and hear different things and, you know, I’d rather them get them from family caregivers than so called experts. And like we are the experts in caregiving, yes, in our own caregiving story. But we had to like, it was a lot of trial and error. And so if we can kind of help somebody by pulling them up a little bit and make it a little bit easier.

Plus it’s a form of advocacy. I don’t want to just be one of the 53 million caregivers in the U si want, you know, your Matt and Lindsay and Elizabeth and these are. Yeah, these are your neighbors and your people that live down the street. Um, well, and one of the best care tips you shared with me is that about correcting your mom. Um, who again had Alzheimer’s and by the way, I’m, I’m sorry for your loss, Matt and also for Steve and I don’t know if this is, today’s my mom’s birthday.

So that would have, it’s interesting. So, she’s, you know, she hugs to you. Yeah, I just had one in September for my mom as well. So yeah, they mark those markers, the milestones. No, fine. I’m still figure out how to deal with those. They’re not uh I, you know, it’s for me it’s like I tried to um usually I text my siblings. Um I do post something kind of on social media and I sometimes I wear their favorite color or eat their favorite food or ask people to kind of share stories about them.

Um So it’s not always the same but I feel like just like some kind of like marker of like this is, you know, this is uh not just any day kind of thing. Um But one of your tips was about correcting your mom. I think you got from somebody and you know, once you’ve got that tip, like it resonated with you. Um And it looked different like after you got that, well, talk a little bit about that because I think if there’s people taking care of folks with dementia and Alzheimer’s and I know not every dementia is the same but if that’s the correcting part of it. Sure.

Um, yeah, it was kind of, uh, I guess this is a little bit of hyperbole but not much. It was kind of life changing. Um, in our, in mom and I’s, uh, life with Alzheimer’s. Um, and I think what resonated, what resonated with me about it, uh, or, or what stopped me to um you know, enough to have it land was that it was so simple. It wasn’t jargon, it wasn’t, you know, um sort of academic or it was very simple. Stop correcting your mother. Um And the context was I, we had this just a wonderful nonprofit uh down where my mom lived um in Brewster Massachusetts at uh the Alzheimer’s Family Support Center.

Um, yeah, it was kind of, uh, I guess this is a little bit of hyperbole but not much. It was kind of life changing. Um, in our, in mom and I’s, uh, life with Alzheimer’s. Um, and I think what resonated, what resonated with me about it, uh, or, or what stopped me to um you know, enough to have it land was that it was so simple. It wasn’t jargon, it wasn’t, you know, um sort of academic or it was very simple. Stop correcting your mother. Um And the context was I, we had this just a wonderful nonprofit uh down where my mom lived um in Brewster Massachusetts at uh the Alzheimer’s Family Support Center.

And she here she was well into her journey with Alzheimer’s disease. Um You know, she’s feeling things, saying things, um uh trying to do things, wanting to do things that in my, to my mind just were entirely disconnected from reality. They weren’t like it just, no, you didn’t go to the beach today, mom. It was January 17th in Massachusetts like that. What did you really do? Right. Like, and that would devolve, dissolve into AAA fight. Um, an argument. Um which sounds horrible when you think about it, but it just, you know, a mother and son sort of just tit for tat bicker arguments and it’s just nothing good came of it.

Um But what Molly’s point was in telling me to stop, correct my mother was that those things that she was feeling or saying or wanting to do um to her, they were real and as a result of like the changes in her brain and her condition and I, I hadn’t yet made that connection, I hadn’t yet bought into that. Um So really, it all comes down if, if I, if I boil it down in retrospect, it comes back to understanding, you know, my mom’s condition, right to, to inform um how I, how I care for her.

Um And, and be there for her. So, and the, and the change was almost uh instant, right? It was hard for me to do at first because again, you know, some things I would hear or see um just, just weren’t, they were untethered from what I knew to be reality. Um, but I just would choke that down as long as it was safe for her and others to do so. Right. Like she wasn’t putting herself in or anyone else in danger, um, lean in, go with her and, um, sure, trying to distract when you see an opportunity or sort of change topics.

What have you. But that singular piece of advice really, um, had a massive impact on mom and I’s quality of life together as she was getting into these middle and later stages of, um, of her condition. Yeah. And I mean, thank you for sharing that. And it’s like we used to call them, my mom had some cognitive, we never had it formally diagnosed. She was already on hospice and last year of her life, but cognitive decline and she definitely went on adventures. We’d say like she just, and same thing.

It’s like they were when she kind of accepted it, it was like, it was entertaining just to kind of, it’s like you’re, you’re, you’re entering her world. Um, as long as they weren’t hurtful and sometimes there were some really mean horrible adventures. Um, but you, you know, you just remember it’s not mom, it’s the disease or not. That that’s the disease. Like it’s just, uh, it’s hard, it’s hard. Um The parts of your story Matt are featured in, uh in You and Lindsay in the Wine women and dementia movie.

Now, obviously, you, I know you told me you don’t identify as a, as a woman, but you’re part of the package with Lindsay. And I love that there was a couple of representation in the sandwich generation. Um I’ve had the privilege of seeing and it’s amazing. What, what was that like to be a part of the wine women and dementia documentary? Uh It was wonderful. Um So, I, yeah, it was wonderful is the short answer. Uh The, when I was uh sort of at the middle ish stage of my journey.

Um You know, I’m all on the internet all day for work. I was uh a big um I was a Twitter user and I found um care chat from, you know, Denise Brown and dot com. Yeah, way back when and, and I anyway, I, I personally got um a lot of uh a lot of, you know, a very helpful sense of community, I’ll say um through, you know, Twitter and Facebook and things like that. And one of the people I met um was Kitty Norton, the um creator um director, producer, the, you know, Kitty willed wine women and dementia into existence.

Uh which I just think is so unbelievable. Um I remember when she first asked, you know, she sent me a message on Twitter. I don’t think Weve had each other’s emails, but we were always sort of in touch. Um uh I loved her blog. Just a huge fan of stumped down dementia. And, uh, anyway, she, I’ll just never forget when she asked me, you know, or first she told me, like, I’m thinking of doing this and then asked if, you know, we’d want to participate and just, of course, why not?

But then it actually became a reality. It happened, you know, 9, 10 months, maybe a year later, she drove from the west coast over to New Hampshire and said, here I am. That’s right. She pulled right up our, I don’t know if, well, you’ve seen the movie, so you’ve seen the RV? Well, I’ve seen in person because I met her in Roanoke um last year. Yeah, last year. But yeah, it was just amazing. Um So first and foremost, amazing to meet someone who I consider kitty a friend, although we had never met, um based on the connection um that we had around, you know, caring for our parents, you know, over, over the internet.

It just, I, I felt like I knew her and I did kind of know her. Uh But it was, uh you know, it’s just so it was phenomenal on a bunch of different levels that being near the top of the list to actually, uh you know, to actually live, what part of her mission was with the film, which was to go around the country and meet all these people who she um interacted with and communicated with as we’re all caring for our people. Um, it’s just phenomenal and, uh, yeah, and it was, uh, it was just a ton of fun.

Um, you know, actually shooting because, uh, she did Kitty does live the ethos, you know, we did have had a nice meal, had a nice meal and a bunch of wine. Um, and, and just talk so like the authenticity of it all, if anybody’s seen the film or, um, plans to see the film like that was really what happened. We just got together, had dinner, had some wine and, and uh and yeah, I had some real talk about our, our, our uh somewhat shared experience caring for someone that we loved.

And um it was amazing and to see the final product um which I haven’t even seen the full film yet, I shouldn’t, probably shouldn’t say that out loud. Uh Kitty Wells you had, you have to go to a festival currently like it wasn’t actually by the time this is out, I think um I know November 1st daughter because Roseanne is also from the daughter podcast is on it. They were going to show the full thing. Um But I will link to wine women and dementia so people can find out how to do it.

I too have only seen, we did a virtual cafe with wine women, dementia where we watched the 30 minute and then I saw it at the Care colloquium um last year. But it’s, I what I loved about it that is like, it’s, it shows the, the multiple hats that caregivers wear like you, she gives you snippets of what your caregiving life looks like. But then you see like, oh, these are people like when the wine comes out and you’re like chatting at night and it’s to your point, it’s very genuine and authentic.

And I think even if you’re not a dementia caregiver, you will still get um validation and lots of good stuff out of it. And of course, she’ll be, you know, connected to these folks. So it’s, it’s amazing. Um I love that you have that experience and yes, caregiving, like it’s, it, one of the best things I think is the people that I’ve met, you know, through, through caregiving, of course, but this experience has also sparked new professions for you. So like, what did you used to do long before caregiving?

Uh I was in uh technology sales actually. Um Yeah, so never thought I would be, remember that I was, I was in it way back when uh yeah, it’s hard to honestly at this point. Um But yeah, I, I um I had to step away from work um when my mom, uh so we, you know, everything happens in phases and all of that. But, you know, as I’ve mentioned, my mom was living several, you know, a few hours away from us and um she was still living alone for, uh, you know, the 1st, 1st couple years of what I consider to be part of my, my caregiving journey.

And, um, there was a lot of back, I was going back and forth all the time and, uh, just burning, uh, you know, it got to be too much and, uh, had to step away from work, um, to, you know, get down there full time to, um, get my mom transitioned. Uh, Either you or did you do like FML A or like what options were available? Uh Very small company. So I, I took a leave but nothing official benefit wise. No, so big decision. Yeah, it was, it was a gigantic decision again given where our family, you know, young just it was very big decision.

Um But also on the other side of it at a certain point, it became like an easy decision because it was the only option. Um And yeah, so uh but wound up never um really going back because uh over the time that we were looking for care for my mom, looking for care for Steve just had a hard time finding care, thought that part would be easy. Um And, you know, we’re in our forties figured we could, you know, buy cars on the internet, it’ll be easy to find assisted living.

Um You know, that, that, that, that’s right for, for our parents, et cetera and it just wasn’t, it was, it was a really um kind of crummy experience to, to, to, to do that and wound up starting a website. Um We meant to. That’s right. Yeah. Um Essentially a review website for senior care that was meant to be long form reviews. Like, you know, it’s kind of getting at one of the points you made earlier, Elizabeth, like getting a sense from other people who had had experience with their family member.

You know, what, what, how did they feel about it? Um uh rather than just star reviews, like you can’t pick an assisted living on like three star four. Like it just, I needed, I wanted sort of real perspective from people who actually knew, had experience with the place. Uh And we wrapped that, that’s really where I started writing uh because it was cathartic, but we just wrapped the reviews in storytelling. You know, we just started writing about our day to day as caregivers for our parents. Um And uh anyway, fast forward and I’m still working in this space, supporting caregivers.

I, I work for a company called Carallel that uh does amazing, amazing work. We’re a caregiver support company. Um You know, we have AAA caregiver support line that’s staffed by a team of care advocates who work with family caregivers. Um Is it through, it’s through their employers, right? Employers, health plans um providers in some cases. So, uh yeah, it’s, it’s provided as a benefit. Um Either, you know, through any of those channels. Um And it’s, it’s, it is, I feel um I feel really, really lucky uh to, you know, be working in this space to begin with, but to be doing it with a company like parallel that, you know, the impact that we’re able to make on people who are in the thick of it is just, it’s really um fulfilling.

So, um yeah, that’s amazing. Well, and the row Row and Steve you sold, right? Like no longer. That’s right. Uh No longer. And um yeah, it’s been quite a journey, Elizabeth. It’s like life happens. Um And then, yeah, so Caregiving has given me this new, you know, you asked a question earlier about sort of perspective on caregiving and um I can’t imagine my life without the experience but related specifically uh to what we’re talking about now. It just gave me this newfound perspective on life in general.

Um And, and sort of this, you know, gave me this, like, need to just focus what’s on, on what’s important to me. Um It gave me a passion, uh a newfound passion that um you know, that is doing like you doing what I can to support others who are going through a caregiving experience. Made a movie star. Yeah, it made me, you get more than your 15 minutes of, have you seen the headshot though? It’s not really star quality. Yeah. Yeah. Right. Right. But it also gave me like I didn’t ever knew I like to write just, you know, like I literally started writing as a self care.

I, I would, I would be so charged up and like, just twisted up that I would, I would just open my laptop and start like, stream of consciousness just writing and sometimes what would come out would be coherent. Other times it was totally not, it was anything but coherent, but I felt better after it. It was this just outlet for me. Um And I, you know, I do a lot of writing as part of my job at parallel. But I, I, you know, that’s a big part of why I started my newsletter, which, which is just a personal project that it, it keeps me connected to the outlet.

It forces me to keep using that outlet. Um And, you know, hopefully, you know, it gives me, gives me a chance to, to support others, uh a moment when they might need it. So the writing has, I mean, and it’s not for everybody, right? But it definitely was something that was a great self care tool for me. In fact, I had no time, I had no business blogging and doing that while caregiving like to your point, like we, we were already stretched, right? But it was, it was like a way to kind of process the experience.

And so I used to go to Starbucks twice a week before work and blog. Um is when you know, I called it my happy, healthy time. So it was, uh, with a, with a hot cup of coffee and that’s, you know, that was the infancy of, of happy healthy caregiver, but it’s, I wouldn’t have kept doing it. Had it not been cathartic and I, I now, life in my business is, is much more different. I miss the, the focused writing. It’s something I’ve been trying to kind of figure out how to, how to get back to a little bit.

Um Well, it’s a good segue because we’re one of the reasons why I wrote the Just for you daily self care journal is I wanted it, I wrote it with caregivers of mine, but it’s not just for caregivers, but I wanted to have like a low entry point for people to try on writing. Um And for me, a prompted journal was really helpful for me in that process. But this one, it wasn’t self care specific. This one is, is self care specific, but I also felt like we lose ourselves in caregiving and we, we the lights kind of dim.

Um And so how do you find your kind of your way back through that dark and, and put some of that focus back on yourself to figure out who you are, you know, without, without the caregiving. So we call this the lightning round just because whatever comes in your mind. But sometimes we, it’s not so lightning and that’s Ok too. What are today? You are grateful for. What, uh, my family. Yes. That’s an easy one. That’s easy. But if we’re trying to tie it back to caregiving my caregiving experience.

But, um, yeah, family designate a date night, next week for family night. So, with your girls, all your women. Um, what activity would you enjoy doing together? Oh, that’s a tough one. We have, we have two teenagers now. Um, uh, yeah, bowling, maybe. Um, bowling or just going out to dinner a kids. Yeah, one of those two and allowing them to order off the adult menu. Like it. Remember the phase where it’s like, oh, my gosh, they’re not on the kids menu anymore. Now, can we even afford to go out to eat anymore?

You’re not kidding there. Go mill, split a meal. And why do you like steak and shrimp? Can’t you like chicken tenders? Oh, wait, shoot the era movie. That’s what we do. Only one, only one who’s seen it. So, although I’m getting kind of, yeah, it’ll be fun. Um, you’ll love it. Yeah. Well, I’m sure I will. I’m gonna tell even if you, oh, I love Taylor Swift. I went to the, a tour with my daughter. It’s like, I’m so glad I had that experience with her. Um, and she knew all the albums and I, I studied for a tour, like, I took the assignment and did all of it just, you know, but it it’s, uh, it’s definitely the, the memories that will stick with you to see, like to, to watch anybody, like, in their element doing their joy.

And she’s, I don’t know how she does that all the time and keeps singing and boo. Um, let’s see. What did your teenage self imagine you’d be doing right now? Teenage Matt? Oh, uh, probably, um, playing pro hockey, uh, jokes on me. Um, do you ever get to play any hockey anymore? Not anymore? Too out of shape. I time, too late. Yeah, I like to watch the hockey though. Very cool. And, um, how, oh, this is deep but I think you can handle it. How would you describe a successful life?

Really? Very deep. Um, so this is one that’s informed by my caregiving experience and I’m not stretching to do that. Um, uh, but when it’s all said and done, uh, feeling like I had a purpose, um, that’s, yeah, I mean, I think that’s, that’s where I’d leave it. I think you have multiple purposes. So you’ve got, you’ve got plan B CD efg on, you’ve got it. You, you’re nailing it. Yeah, I appreciate that. So, yeah, it’s fun. Um, so how do people like it, first of all, is there anything else that you’re like?

Oh, I really wish we would have touched on this, you know, anything that you kind of feel like is unsaid and then how do people stay connected with you and what you’re doing. Um, yeah. So, uh, anything unsaid? No, I don’t think so. But one thing I would probably just, um, reiterate or maybe use some words because we’ve, we’ve self care, which to me, I hate hearing the self care. It just, it kind of makes me roll my eye. Like I, I had a hard time being told to take care of myself. Yeah. Yeah.

However, however very, very important. Um, and I had a hard time with it as I’m sure lots of people in a caregiving situation do. Um But, but like thinking of yourself first isn’t selfish. Um And II I didn’t learn that until I learned that too late in my experience. Um But I’m just going to put that out there like thinking about like, how do, how do we, that’s the magic question like that. How do we get folks to kind of take it to heart? Yeah. I, I don’t um I don’t have a good answer for that.

Uh Elizabeth other than um uh keep, keep telling, like keep reiterating it. And um for me, words are really important and like I was telling you earlier with the stop correcting your mom. Like the reason that landed with me at that moment was just because it was words that I, that I, that made sense to me that I um they just landed. I, I think it’s a similar type of thing here, you know, it’s, it’s um I felt guilty and it felt selfish to me, um, to be thinking about myself wanting to go do that thing when I, with my friends, when I hadn’t, I, I’d said no for the last six months or wanting to take an hour and, um, go for a walk or whatever it is, whatever it could be five minutes. Right.

But I, it always, I always felt selfish because I like the dynamic in my head was I’m caring for mom or Steve and they’re, they’re here. Their needs are here and mine are here or here depending on where it is. Right? But in reality, we’re both here, like my needs are every bit as important as my mom’s uh, or, or were every bit as important as my mom’s when we were caring for, when I was caring for her. And not just because that I needed to be healthy and ready and recharged to give her the best care I could.

That’s true. But that’s not the only reason. Right? It’s because I deserve it. I’m me, I’m a person. Right. So it’s not selfish to sort of put yourself on that same level. Um So I don’t know if I answered a question about how we get people to realize it. But, um, you do, I feel it in my gut. Um What did it look like for you? Like when you first started, like, inching toward it because it’s not, you know, I’m sure it was a process. Yeah. Um, it, it looked, it, it’s tough to say what it look.

It, it, it felt like, um, more like I felt like I could relax my shoulders a little bit in those moments. It felt like I could actually enjoy that beer with my buddies over to watch the foot, you know, the football game or half of a football game or what, whatever I could, I could be actually doing something for myself and actually liking the fact that I was doing something for myself. So that’s kind of what it, for me, that’s what it looked and felt like. I think at first I kind of like there’s a lot of self talk that goes through that process and for me it was, uh, what somebody had said this to me and it resonated because again, like, words stick with you that people are like, oh, now I get it and it was like, your, your parents in this case had already lived this part of their life.

Like they’ve already been in their forties. They already like you, you get to do your forties too or you’re, now I’m in my early fifties, but you get my, my drift. It’s like we only get that time with kids certain age or friends that are like, you know, the things that we’re interested in. So, um, I, you know, and ultimately, it’s a yes. And we, you know, we didn’t make you any less of a caregiver. You still were a huge support for your father in law and your mom and your kids and showing up, you know, in different ways.

So, you know, I hopefully this will like, you know, that’s the other, what I’m hoping the podcast, like, just to normalize those conversations and again, self care looks different for everybody. There’s lots of varieties of what it looks like. So maybe here’s something you try it on and see if it works for you. Um, and, and that’s, that’s what our hope is. Well, how do people stay in touch with you, Matt? Um, the newsletter is probably the easiest way. It’s, uh, it is, you can find it at three thing.

Thursday dot com slash newsletter. Um, I’m on Twitter as well, I guess. X but not as much used to be. I’m really bummed by that whole thing, by the way, like it’s just feels different now. Uh, but I am there. It’s, it’s, uh at Matt underscore Parin P er, Rin. Um, and we’ll link to your other stuff. You’re a little bit on Instagram, a little bit on Facebook and linkedin too. Yeah. Yeah. But I’ve been sort of a interesting for, I can’t really put my finger on why, but I’m still a lurker on social media but I haven’t, I’m not quite as, I haven’t been as active um, since, since, uh, the loss of mom and, and Steve for whatever reason, but um, it’s a season, maybe it’ll come back that it’s not gonna be next year for me.

Like the, the election year. Like, I always like fast forward. I know. I know. Can we get past that? I’m with you. I’m with you. Yeah. Uh, yeah, three thing Thursday dot com slash newsletter. It’s one email every week on Thursday mornings. Um, that’s probably the best way to get in touch. It’s amazing. So I hope you guys check that, check that out. Thank you, Matt for spending this time with me being vulnerable, sharing what you share and just um you know, give, giving a voice to your story and the space to kind of share it. I really appreciate that this time with you today. Oh, my pleasure. Thanks for the invite. I have a lot of fun. So, thank you. You’re welcome. Take care.

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 dot 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.

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