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Happy Healthy Caregiver Podcast, Episode 168: Navigating Caregiving Resources with Alyse Dunn

Alyse Dunn and her sister were young adults when they cared for their parents. Alyse’s caregiving experience prompted her to start a business to help family caregivers. In this episode, we talk about the racial nuances Alyse encountered while caregiving, what she would change in the care space if she had a magic wand, and how caregivers can fast-track to the resources they may not even know they need.

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

 

Episode Sponsor – Rare Patient Voice

Do you want to earn cash in exchange for your opinion? Rare Patient Voice (or RPV) helps connect researchers with patients and family caregivers for over 700 diseases and conditions. For patients and caregivers, RPV 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 are interested, join the RPV panel at: https://rarepatientvoice.com/happyhealthycaregiver

 

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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 [Tweet “‘Be strong for the things you can’t control, by simplifying the things you can.’ – Courtney Carver #CaregiverJar”]

Links & Resources Mentioned

Remarkably Bright Creatures by Shelby Van Pel

 

Richard Lui - Caregiver Spotlight (Ep. #124)

Happy Healthy Caregiver Podcast, Episode 151: Our Long Term Care Crisis with Susie Singer Carter

Happy Healthy Caregiver Podcast, Episode 160: Recovering From Burnout with Usha Tewari

Michael Jordan quote

 

Just for you a daily self care journal book cover

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Favorite moments & quotes from the episode

[Tweet “‘Across racial lines, I’ve always lamented that there has been an unwillingness to really go there in the media with just how dirty and gritty this work can be.’ – Alyse Dunn @CareCopilotCo #caregiving #blackcaregiver”]

[Tweet “‘As we know, caregiving is of course, emotionally fulfilling in and of itself, but aside from that, it’s a very thankless job, because no one knows the extent of it but you, the person who’s in it…We’re really excited to be able to reward some of these caregivers in the way that they deserve.’ – Alyse Dunn @CareCopilotCo #carecopilot #caregiversupport”]

[Tweet “‘This is a very, very common challenge that people face. Just because people aren’t discussing it very openly, doesn’t mean that it’s not happening…because it’s so easy to think that it’s just you, simply because there’s not a lot of visibility around it.’ – Alyse Dunn @CareCopilotCo #youngcaregiver #carecopilot”]

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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 in the post and guests 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 health care network. This is a very, very common challenge that people face just because people aren’t discussing it very openly, doesn’t mean that it’s not happening because it’s so easy to think that it’s just you simply because there’s not a lot of visibility around it, 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 by weekly to help family caregivers integrate self care and caregiving into their lives. Each episode has an accompanied show notes page. So if you’d like more detail about the topics, products, resources we speak about or to see the related links and photos, you will find the show notes by going on the website happy healthy caregiver dot com. And underneath the podcast menu, click the image or the episode number for today’s show. The link for the show notes is also going to be found in your podcast episodes, description on various podcast platforms. Do you know about WCN University? It’s a digital course library for family caregivers. My first course is available called Six Steps to infusing self care in your caregiving life. There are also a ton of other courses and a variety of different topics, search and select in the directory for what is most helpful to you right now. Learn more at www dot wcn university dot com for today’s segment on what I’m reading. I recently finished listening to a book called Remarkably Bright Creatures by Shelby Van Pelt. It was a read with Jenna today’s show book pick. It’s about a woman named Tova Sullivan and a bunch of other characters. But in this case, Tova Sullivan’s husband died. She began working the night shift at an aquarium where she befriended a giant pacific octopus named Marcellus. Marcellus is a detective like character. And the chapters written in his voice are my favorite part of the book. Working at the aquarium. Tova kept busy and found her purpose and her job also helped her cope with her grief and the mysterious loss of her son when he was 218. And that was about 30 years prior. The book has a handful of other characters and their stories intertwine throughout the pages. Marcela, the octopus takes on a key role in being the detective and pulling it all together. I gave this a three out of five star rating, but I’m really in the minority. Many people loved it. It had 40,000 reviews on good reads and it has a 4.43 rating overall. I did absolutely love the audio narration. I thought it was top notch. So I will link to this book in the show notes, page. My favorite thing this week. So my husband and I were late adopters to the whole Ted Lasso show on Apple TV. When season three came out, we decided to sign up when someone told us about a three month free subscription that we could get to Apple TV, uh through our target app. So we binge watched it and season one was by far the best, but we did enjoy the entire series Ted Lasso is an American football coach who is hired to coach a UK football club, A K A what we call in the US soccer. And he’s working through some stuff in his life as is really everyone that we meet on the show and adore throughout the cast. Ted himself has lots of life lessons sprinkled into his coaching. After watching the series, I was inspired to write a blog post about how some of Ted Lassa’s lessons can relate to our caregiving lives. And I invite you to check out the article I wrote and I’ll share it in the show notes. I’ve had some great feedback and comments about this post. Before we get into today’s caregiver spotlight episode, I want to shine a light on 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 700 diseases and conditions and they don’t have to be rare diseases or 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 dot com forward slash happy healthy caregiver. Let’s meet today’s caregiver in the spotlight, Elise Dunn. Elise Dunn and her sister were young adults when they cared for their parents Elise’s caregiving experience prompted her to start a business to help family caregivers. In this episode, we talk about the racial nuances. Elise encountered while caregiving as a young black female caregiver in which she would change in the care space if she had a magic wand and how caregivers can fast track to the resources they may not even know they need. Enjoy the show. Welcome, Elise to the Happy Healthy Caregiver podcast. Thank you so much for having me, Elizabeth. I’m really excited to chat today. You have the best smile. I have to tell you. So if people are watching, they’re gonna be like, yes, you bring you bring the smile. I love it. So, so, so lovely to have you here today. We, we’re going to get into your story and everything that you’re doing to help family caregivers that we always do kick off the show with a little bit of words of encouragement and inspiration from the Happy Healthy caregiver Jar. So let’s see what we got here, Elise uh bla bla bla OK. It says be strong for the things you can’t control by simplifying the things you can. And that’s by a fellow podcaster. Um Courtney Carver. Um She’s talks about simplifying your life and, and all of that. So be strong for the things you can’t control by simplifying the things you can. I love that. Yeah, I think so much. Sometimes we can just be like banging our head against the wall and then you, you do have to kind of step back and think like, is there something I can do to really influence this or is this really out of my control? Um, as a caregiver, I felt like I wanted less to take care of. Does that resonate with you at all? Absolutely. Absolutely. You know, to, to get into it, my sister and I took care of both of our aging parents, one right after the other for a total of eight years before they both passed away. And absolutely, you know, I, I loved my parents, both of them dearly, but I definitely found myself hoping, wishing, wanting to do less to just be able to enjoy my time with them, uh, especially going through this relatively early in life in my twenties. Um, but, you know, you, you play the cards that you’re dealt, as I always say. And I’m just glad that I was able to have them for as long as I did. Yeah. You honored them. Well, you and your sister honored your parents while by, um, taking care of them. And sometimes when I’m talking about, like, less to take care of too, like I remember sometimes it just felt like caregiving was spiraling out of control and sometimes work felt like respite like it was like something I understood to do. But then there were times where I was like, I just want to start and finish something that let me purge this drawer or let me kind of just go through my clothes and have less choices. Like, at this point I think I even made it. So I had like a capsule wardrobe. I was like, I don’t even want to think about what I gotta wear. I just want to make it everything easier. Yep. Absolutely. I definitely went through that phase of experimenting with, you know, meal prep, prepared meal plans, meal delivery and housekeeping and all of those things that I could do to just simplify and streamline as much as possible. Yeah. So when you’re in the thick of caregiving, you never know when you’re gonna get that call that’s going to disrupt the entire week the entire month. And so, yeah, being able to simplify and streamline those other non caregiving things can, can really make a difference in terms of sanity. Yes, for sure. Well, tell us a little bit more about your caregiving story. At least you kind of, um, allude to you and your sister. You are young people taking care of your parents and both of your parents were physicians, right? Like, how did their professions inform your caregiving journey? Yeah. Absolutely. So, my sister and I, as I mentioned, we took care of both of our parents one immediately after the other for a total of eight years. And so our dad had multiple sclerosis and diabetes and our mom had Alzheimer’s. So we took care of dad in the last two years of his life. And then we took care of mom in the last six years of hers. And our mom was diagnosed with Alzheimer’s shortly before our dad died. And it was the darnest thing, you know, my mom gave such a beautiful and clear eulogy at my dad’s funeral and she declined so quickly. Not even two weeks later, my parents were divorced but they always stayed friends, Neither one of them ever remarried. And so my mom would call me just two weeks after he had died and said, you know, hey, your dad hasn’t called me back. I haven’t heard from your dad lately. And so I had to tell my mom over and over again that ok, dad’s not calling you back because he died a couple of weeks ago. You gave part of the eulogy, remember? And it was, oh, wow. I wish that I was articulate enough to accurately convey just how gut wrenching that was. Um And yeah, you know, to your point, they were both physicians, clinicians too and those who have a medical background, you know, this irony might not be lost on them. My dad passed from complications of multiple sclerosis and diabetes and he was a physiatrist. So worked with a lot of patients who were suffering from movement injuries, worked with a lot of patients doing physical rehab, occupational therapy and the like and then my mom died of Alzheimer’s and she was a psychiatrist before she was diagnosed. So she spent her career healing the minds of others just to come down with and eventually die of Alzheimer’s. And it made navigating their care all that much more challenging because naturally they didn’t want to go to the hospitals where they worked, they didn’t want to see their peers, you know, now being in this state where they needed the care. They also were very effective in convincing my sister and I for a long time that they didn’t need the care because they were the experts in health care for a very long time until they weren’t. So, yeah, some, some unique challenges there. Yeah. How did you get over the hump of like, you know, the beating the care? I think, you know, that’s, that’s one even if you’re not a physician that folks or a clinician that people um get faced with is that, that denial and the refusal and the care, when did it become like, ok, enough is enough? Yeah. So for us, me and my sister Lisa, we really had to do our own research into both diseases and be able to articulate to both of our parents where their expertise ended and where the expertise of other clinicians was needed. Um And so we really had to work on them in multiple conversations and make a case for it. And then they were able to get on board slowly over time. Um But even then, you know, it was a hard one battle. My mom denied that there was anything wrong with her memory until the alzheimer’s took her voice and she could no longer speak. So, you know, towards the end, we were able to get her into some neurologists, but she kept maintaining that. Yeah, she was absolutely lucid the entire time, which is frustrating. Right. If someone’s not meeting you halfway and you can see that there are these support and services could potentially help them and a lot of trial and error, it sounds like. Well, I know you had shared with me that you faced some challenges as a young caregiver. You’re in your twenties, you’re thinking about your career and potentially dating and things like that. What were some of the initial challenges you faced when you were taking on this caregiving role? Yeah. Absolutely. So, if I’m remembering right, I was about 26 when my dad started needing care. Um, my sister is six years older than me. So she was 203. And so, you know, I was a few years out of undergrad, working my first job out of undergrad, starting to date a little bit and, you know, going out with friends and I was hit with this completely different life stage than all of my peers. You know, in my peers lives in their mid twenties, they were getting married and having kids and, you know, saving for their first home and that was just completely off the table for me because I was spending all of my nonworking time, my sister too trying to keep our parents alive and it created a strong sense of, I’ll be honest, I’m not like, proud to admit this, but there was a strong sense of jealousy there where I would look at my friends, for example, you know, going to their parents’ house for the holidays and their parents were cooking and cleaning and taking care of them and they could stay in their childhood bedroom over the holidays. I was trying to, you know, get in those neurologist appointments while I had the time off of work, making sure that mom or dad, whoever needed help at the time was dressed and fed to give the AIDS time off. It was a completely different life and it was pretty isolating lonely and at times jealousy inducing. Mhm. Well, that’s, that’s authentic and that’s real. You know, I know even for my folks who had mobility issues, like, people, people used to come in, their grandparents would come and, like, play with the kids and take them away and, um, you know, do those kinds of things and there was a time even where it wasn’t something that I had even mentioned. But my kids would mention like, so and so’s grandparent. We went and we had lunch with them and they asked all these questions about my life and I don’t really have that relationship like that with um with my grandparents. And I just thought, wow, this is, uh you know, it’s different, it’s different. So, and every and families are complicated for sure. Um Intersectionality, it’s a hard word to say, but intersectionality is an important concept. And as a black caregiver, did you find that your gender and your race combined to create like some kind of a unique experiences? Like how did that these factors shape your caregiving role? Yeah, absolutely. So, you know, in case anyone is not listening or not watching the podcast, I do identify as black and both of my parents were as well. Um And so, you know, when it comes to gender, as we know, the vast majority of caregivers are women. And so in terms of gender, I don’t think that that necessarily played that much of a role in my caregiving experience. I also didn’t have, I don’t have brothers. So there wasn’t any room for that sort of gender disparity to play out. But when it came to race, there’s so much nuance in taking care of a loved one who is a part of a racial minority in this country. Little things like, for example, my sister and I moved our dad into a senior community and finding the right senior community for an aging parent is hard in and of itself, there’s an extra layer of complexity when I was trying to find the right senior community for my black father who grew up in Detroit during integration in the sixties, well, and who was a college educated physician. And so it was important to find the community that was racially diverse, but it couldn’t have just been any black people. It had to be educated black people like him. And it’s, there was an extra nuance there that other families might have to have to go through. One other example that I can share is something that happened with my mom who grew up in the Deep South. And so she had her own stories of growing up in the Deep Deep South as a black woman in the fifties. So I’m sure you can imagine. Yeah, no doubt. And the big thing with my mom was actually food and this is something, uh, that came up recently with a caregiver who we mutually know named Usha. And so she’s been on the show. Oh, yes, we love us. And she had the same issue with her mom where her mom ate Indian food. She expected a certain type of cuisine when she was in the hospital. She wasn’t eating the hospital food because it was not what she was used to. My mom went through the same thing. She grew up in the Deep South. She grew up on so whole food collard greens, sweet potatoes, mac and cheese. She’s not gonna eat the tuna fish salad at the, the hospital. So those are just two examples of some of the nuances that come into play when you’re taking care of someone as a racial minority in this country. Did you find that anything in the hospital situation or the senior living community? Were they willing to kind of, um, do anything special or different or kind of meet you there? So that it was a more comfortable environment for your, um, your mom or dad? Yeah. You know, it really came down to precise individuals within these larger systems. So sometimes it’s not even a matter of finding a diverse senior community. It’s a matter of finding a community that has on staff aides who are either ethnically diverse themselves or very culturally competent and culturally aware, who can have that nuance and be able to speak with your parent or whoever in a way that they feel comfortable. And so my sister and I were able to find those few people throughout the system. For example, my mom’s uh in home care aid, we kept her at home. So the aid that we found towards the end, her name was Sylvia was fantastic and she also shared some cultural backgrounds. So there was just an understanding there that made things a lot easier. So systems as a whole. No, not necessarily. But we were able to find those individuals that helped a lot. Well, that’s good. That’s, that’s certainly good. You know, and, and I think the media sometimes portrays caregiving in, in certain ways, right? Were there moments when the media representations of family caregivers didn’t align with your experience as a uh a young black female caregiver. Yeah. And you know, I would take it a step further and say that there are so few media representations of caregiving for older adults in general and those that are, you know, across racial lines. I’ve always lamented that there has been an unwillingness to really go there in the media with just how dirty and gritty this work can be. You know, there’s a lot of uncomfortable bathroom things that you go through uncomfortable financial things that you go through, you know, with late stage Alzheimer’s, it does tend to manifest and cause a lot of anger and sometimes violence in the patient. Uh There were some times when my mom didn’t and I didn’t literally fight each other, but we definitely grappled a little bit, especially with showers. And those are the things that you just don’t see in the media. And I wish that more of that was represented so that those of us who are or have been in the trenches could know that we’re not alone and that our experience is not necessarily unique. These are things that everyone goes through. Yeah, I think there’s um there’s a couple of individuals again, right? There’s individuals trying to make to initiate change and a couple of them have been on the podcast, Suzie, Singer Carter and Richard Louie doing documentaries to try to um and using their kind of status and media to really implement some changes. There, Susie is doing something with no country for old people that’s really exposing some of the things that are going on and nursing care. And then Richard um Louis talking about his parents and kind of really showing the emotional side of caregiving um particularly for a male, male caregiver um and South Asian um culture as well. So it’s, but there’s to your point though, it’s, that’s those are individuals like it is not out there as much as we would, would like it to be. What are some of the things that, you know, if you could wave a magic wand le and, and instill some change um in some of these areas that we’ve been talking about, what would you like to see happen? Yeah. So if I had a magic wand to instill change, I would actually instill change in an area that we haven’t necessarily touched on too much, which is financial support. Um One of the biggest things that I warn individuals about who are navigating this for the first time, especially for an older adult who might qualify for Medicare, which is of course a government sponsored health insurance for those over the age of 65. I always have to warn people, you know, Medicare doesn’t really cover in home care, long term care. Nothing. Yeah. Yeah. There’s a few loopholes here, but they are few and far between and it’s hard for people to even conceptualize of that, of, oh, why is that a big secret still? Like I, it does mystify me that. That’s right. That’s news to people. I have a theory, I have a theory that it’s not necessarily that it’s a secret but I think it’s just so hard to accept the fact that we live in a country that just lets our older loved ones kind of fend for themselves and forces their adult Children, friends and family to sacrifice their own financial livelihoods for them. I think it’s just so hard to conceptualize that people protect themselves mentally by not really letting that in until unfortunately they have to. And like me, they start losing their money. And I remember the day that my sister and I both drained our savings just to pay for our father’s funeral. And that, yeah. Yeah. That was the other surprising thing that I think a lot of people don’t know is like, even if you are a financial power returning for somebody, your po a ends at the point of death. And so you can’t access even sometimes that money for the funeral and the memorial expenses. So it’s almost like if you have some money aside to kind of take it out so where you can access it, um, more easily in that thing. And then what, how has it influenced how you’re looking ahead because I know you know, caregiving changes us and it’s like we’re looking ahead into our future. You’ve got plenty of years left even. I got plenty of years left. Like what? But what, what steps would you take to kind of proactively prepare for your, you could never be too, too old or young, I think, to start. Yeah. So, you know, once both of my parents passed away, I did a lot of soul searching because I’m a software engineer by trade. And I looked back at that and I did not feel good about the fact that I, I have this skill set as a software engineer and I could potentially build something anything, some sort of digital tool to help people navigate this. And I didn’t take action on that when my parents were alive because I just did not have the emotional or logistical capacity. But after my parents did pass away and I did have that capacity, I started my company Care Copilot, which is a website that people can go to care copilot dot co that helps people navigate all the different services that they might not even know they need when they’re going through this. So for example, you brought up, you know, the power of attorney. A lot of people don’t realize that you cannot manage finances for your parents. Unless you have that power of attorney, you can’t make medical decisions on their behalf unless you have a health care proxy. These are the questions that people don’t even know to ask. And that’s why I built this web app to help expose those questions that again, people don’t even know to ask anyway because it’s, our system is so fragmented. Right. There’s just pieces of this, like, and it’s like a little treasure hunt, but there’s really no treasure there. It’s just kind of, it’s just a hunt, frankly, a brutal hunt. Ever. No treasure at the end. No treasure. Uh, but, and then you have no time to really look for it. And so I think the fact that what you do through care, Copilot helps fast track people to some of these topics and things and things that they might not even have considered. Like, we’re all kind of just floundering through this and learning new vocabulary and learning different terms and, and understanding what the resources are to, to, um, talk to and what might be available to us even as you were caregiving. Like, what were some of the resources that kind of stuck out to you as, like, ah, this is helpful. Yeah. Absolutely. So, one thing that I didn’t, there were a lot of things actually that I didn’t realize until it was unfortunately more or less, too late. You know, I didn’t realize that a lot of cities, even smaller cities have adult daycare centers where your loved one can go to during the day, they can have meals, activities be watched after. That’s a real lifeline to some, it’s affordable, more affordable. Yeah. Yeah, there’s a lot of them do like sliding fees. Some of them are free if you’re low income. That’s something that I didn’t know about until it was too late. One other thing that I, that I didn’t realize until towards the end was that, you know, if you are a middle class family like ours, there’s different things that you can do in order to get your loved one on Medicaid health insurance. And Medicaid does actually do a pretty good job of footing the bill in certain circumstances for in home care or for a senior. I didn’t even know how to navigate that. I didn’t realize that there are professionals who you can hire to help you with that process. I didn’t realize that there are professionals who you can pay by the hour. They’re generally called geriatric care managers who can hold your hand through this whole process and show you everything that you need. There is just such a wealth of information out there, but those are the first few that come to mind in terms of things that I wish that I had known about. Yeah, the Medicaid thing that you bring up is like, I mean, with my mother-in-law, we, I don’t know, I think we applied nine different times for Medicaid for her. She was divorced, she had no money. She had like $800 social Security, supposedly too much money. Um and then, you know, that does lead into like caregivers going into their own pockets. And I know we did um to help pay for a lot of things for her. Um And then I do, I don’t, maybe you work with them to Alisa, uh my navigate dot com. They help people kind of navigate through that red tape to kind of hopefully increase the chances of you getting approved more quickly. Um And having those conversations at an a an affordable way, it’s not available in every state. But I can, I can share that for folks too. Well, let’s go back to care co pilot. So you, you’ve lived this experience, you’ve, you’ve, you’re a software engineer, I got a background in it, product management and all that. So, and then you’re like this, there’s got to be a better way, which is kind of the, the thing that all of us say, right? And when we’re starting a new business as an entrepreneur and, and by the way, entrepreneurship is, is a lot of work. It’s a lot of work and it’s not for everybody. Um But what are some of the things that people when they go to care? Copilot dot Co? Like, what would they, is it a website or an app? First of all, it’s, and then what will they find there? Yeah. So today it’s a website, we’ll probably release a mobile app around this time next year depending on uh what people request from us. And when so if you go to care copilot dot co today, you can do a few different things. We have a whole marketplace of pre vetted service providers. So in home care agencies, elder care law firms and others that we as a team have personally vetted and vouched for and would use with our families. And you can find these service providers who can help you with some of the different things that you need and cut through the red tape of just trying to Google on your own and find reviews as best as you can. Uh, so that’s one thing that you can, uh, benefit from with care copilot, care copilot also offers sort of a fun rewards program where you can earn reward points, kind of like, you know, airline points by doing certain things that you’re already doing on behalf of your loved one, like getting that power of attorney and you can earn points and cash them out for gift cards or use them as a credit on services. So that’s been really popular as well. I love that. Let’s game five of this hard work, this, this invisible labor that we’re all doing. Exactly. Exactly. I mean, as we know, caregiving is of course, emotionally fulfilling in and of itself. But aside from that, it’s a very thankless job. It’s because no one knows the extent of it, but you, the person who’s in it and a lot of us aren’t necessarily, you know, we don’t articulate that day to day, nitty gritty of how our back might hurt because we’re trying to lift our loved one in the morning. And so, yeah, we feel, uh we’re really excited to be able to reward some of these caregivers uh in the way that they deserve. Yeah, I think sometimes we don’t share that my sister, you know, we transitioned primary care from my mom, from me to my older sister. And when that happened, you know, she had told me she’s even was even afraid to kind of peel back some of that emotional layer and then, and the deep work that caregivers do because she just thought she would just unravel frankly, it’s like you just kind of roll up your sleeves and you keep showing up and you keep doing it because if you step back to kind of even think about it, it could really, she was afraid she’d be in the fetal position in a corner, you know, of uh of burnout. And I don’t want anybody to kind of get to that point for sure. So uh I love that you’re, you’re providing ways for kind of people to proactively do things that that’s gonna set themselves up for success and hopefully make this more of a sustainable thing with a sense of, of community. Um The resources that you mentioned through care copilot, are they for all areas and states or is it concentrated in, in, for particular areas. Yeah. So we’re rolling this out to a few different cities at a time. So, right now we have a pretty strong presence in New York City and Chicago. Uh, but we are rolling out more cities all the time. So stay tuned. And if you sign up for care, copilot and we don’t necessarily have any pre vetted services in your city yet. There’s a way that you can indicate and get a notification when we’re near you. And in the meantime, you can start earning rewards and connecting with other caregivers through the app. Uh, even before we have service providers in your city. Yeah. So good. Talk a little bit about the community because even, uh, you’re doing it within care co pilot, but you’re even doing it setting up community in New York City. Uh What’s why, why is this important to you? Yeah. So we do have a, uh, an in person meet up. We organize it through meet up dot com and we have about 100 people in this group right now. And once a month we get together in New York City and Care Copilot sponsor is just a free event. One month we went and saw a Yankees game one month, we did a cookie decorating class. Another month we went and got foot massages. Last weekend, we went to brunch at a really fancy place here in New York City in the Meat packing district, which sounds gross, but it’s very fancy. Um And so it was important to me to set that up because when my sister and I were going through it, there were really, was no organization out there that truly saw us and rewarded us and acknowledged us for the work that we were doing every day. I mean, I would have killed for anyone to say, you know what Elise, you’re having a really hard time. Let me just take you to brunch and like treat you to a massage that never happened, never happened. And it’s really important to me to be able to provide that to other people who are still in the thick of it. Yeah, I mean, that’s what it informed my business too. I felt like as a family caregiver I was being should on a lot should like you should be doing. My mom had lots of things, diabetes being a big one too. And, you know, I should be doing this for her nutrition. I should, you know, every, everywhere where I went it was just like adding more stuff on my to do list. But to your point, nobody was saying like, oh wow, this you have kids and you’re working in a full time job and you’re doing this as well. Like this must be a lot for you. You know what, here are some resources that can help you. Here’s some support that can help you. Um And you know, I want that to be changed. I want, you know, people to go into these settings and be like, here’s, here’s care copilot, here’s happy, happy, healthy caregiver. You can listen to podcasters communities and, and people that could completely change their care experience. Yeah. Yeah, absolutely. I think that that’s what people really need right now, for sure. Um Well, I hope people check out Care co pilot. We’re gonna, we’re gonna check that in there. You mentioned earlier about like when your dad died and your mom um caring for mom and how she was changing with her, with her dementia. And you know, in one, in your words to me earlier, you had said that you wasted a lot of time and energy trying to interact with your mom as the person that she was instead of the person that she had become. And so I just maybe share a little bit about that because I see that as a common thing when I’m coaching people as well. Yeah, absolutely. And I remember making an Instagram video about this as well. You know, as I mentioned, my mom was a, a psychiatrist, a board certified psychiatrist. She had been practicing for many years once the Alzheimer’s started to take over and she was always so logical, so practical, so organized, so articulate. And so when those things started to break down, it was a really hard for me to see it for what it was and I would spend so much time arguing with her. And, you know, I was also, you know, young as I was going through this when I was in my twenties, I didn’t know anything about Alzheimer’s and how it worked. And I’m embarrassed to say that I would give her a pretty hard time about it and say things like mom, you locked yourself out of the house again. You got lost driving to my aunt’s house that you’ve been to every month for the last 50 60 years. Uh, and I spent a lot of time just like giving her a hard time and not really meeting her where she was and trying to force her to stay in the state that she was and force her to remain the person who she was instead of just acknowledging the fact that her brain is different. My mom is different things that she could do a year ago. She cannot do anymore things that we could talk about a year ago. We cannot talk about those things anymore and there’s no turning back the clock. We’re just gonna have to move forward from here. And yes, exactly. I wish that I would have spent less time arguing with her and trying to force her to stay in the state that she was instead of just accepting where she was and enjoying what ended up being the last few years of our lives together. Yeah. I mean, I think when we know better. Right. We, we end up doing better and you were young and give yourself grace and, and less guilt about it. And even I’ve got an older brother who’s neurodivergent and his brain is different, you know? And so things that, like, we don’t all agree in my sibling, family of the, the five of us besides him on how he should be able to do things like, definitely, um, my brothers think he’s capable of doing a lot more and whereas I think the women and the sisters have a little more compassion and have been a little closer to it to um to see that. But uh one of the people, there’s a couple of the people that I feel like have really helped in my education of that, even though they’re more dementia specific, it still helps. I think with being a, having a neurodivergent brother is Tipa Snow and Adria Thompson with be light care. Uh And so I, because I love their videos, they’re just very um and dementia darling too, like they’re very specific about talking to people um and communicating and when and Tipa says, you know, stop driving off the cliff, you know, and try something different if it’s not working. Um So anyway, I just appreciate you being vulnerable about that and sharing about that. Let’s flip gears and talk about your self care. So we, we did a collaborative video, I’ve been really trying to focus on my Instagram, particularly on Thursdays of working with other people in the care economy and really sharing what real self-care can look like for caregivers that’s accessible and affordable and all of that. And so you shared your tip of how you squeeze in these little two minute workouts, even 32nd workouts sometimes in your day. So I’m gonna, I’m gonna link to that your mini workouts. But did you get your self care in today or have you been sprinkling it in Elise? I did, I did and you know, I still do my mini workouts. Some are longer, some are shorter, but most of them are half an hour less. And yeah, a lot of them are five minutes or less. And so this morning, I was feeling pretty low energy, but I still made a point to get out and just take a walk around the block this morning. And one other thing that I’ll share is that when it comes to, you know, getting that workout in and getting those endorphins, it’s, I remind myself that I’m not really doing it for the physical benefits because I think that that’s why a lot of people shy away from the physical activity. It’s because it’s really hard depending on your body type to see the physical benefits of it. But I remind myself that I’m not doing this to look good. I’m doing this to feel good and just because it lifts my spirit and gives me the energy to get through another day and even the five minute workout can like, get that heart rate going and get those endorphins going to, to help you have the fight that you need to fight another day. Um, so yeah, I got myself care in this morning. Yeah, it’s good. I mean, I think everyone’s got their own definition of self-care. Mine is, you know, trying on things and if they do provide me more energy or they give me peace of mind, I want to keep doing those. And so getting outside is very important for me. Um I threw away that scale a long time ago for working out and trying to change uh you know, and, and get into some kind of supermodel body, it’s health at every size, but it is really more about how I feel and I don’t like the way that I feel if I don’t, you know, get outside or do some hot works or um journal or do some of the things. And so listening to your body and kind of knowing what that is and you know, yourself, best of what’s going to work for you. We’re different people. Um So I, I can appreciate how you’re infusing your real self care in your life. Um You sometimes you say that people well, and I hear this all the time, right? Like people say, I don’t have the time, I don’t have the time to do that but you do say that it’s an investment. What do you, what do you mean by that? Yeah. Yeah. You know, and I get it. I think the challenge is that when a lot of people talk about self-care, they mean expensive and expensive spa days and shopping sprees and realistically so few of us have the time or the energy for that. But we might have five minutes, 10, 15 minutes a day to plant a seed that can grow more happiness for us. So, you know, maybe your self-care routine is journaling, maybe it’s working out, maybe it’s something different that you can do in, in even five minutes or less and you might not see the benefits from that right away. It might take you a few days or even a few weeks in order to really get that value from it. But just like, you know, we invest in our savings and, you know, you do it a little bit over time and it builds up and then you can have a great vacation. It’s investing in yourself in your own happiness and knowing that even 5, 15 minutes a day is worth it because, you know, and it sounds so corny and I’ve been there before, you know, when I was in the thick of it, I always rolled my eyes when it’s when it, I came to self care. But we all know so many horror stories of caregivers who have broken down physically or an emo or emotionally and not been able to care for themselves or the person who they’re taking care of. So, maybe there’s some people out there who can’t bring themselves to take care of themselves, but they can invest in themselves knowing that it’s going to allow them to be around for somebody else. And so that’s the motivation for someone. And if so that’s great too. Yeah. However you, however you get there as long as, as long as you’re doing something to kind of make those investments. Right. It’s like, exactly. Yes. Yes. Well, let’s speaking of self-care, I’d love to get your thoughts on some of the, the just for you daily self care prompts that I picked out for you, Elise. So let’s, yeah, let’s get your answers to some of these. Um, if you had only one selfcare product on a desert island, what would you choose? Oh, that’s a really tough one. I would say some sort of nicely scented candle. Uh, especially one with the, the wood wicks because with the wood wick it makes that crackling sound like a fireplace. And I love those. Yes. I hope that you throw a lighter in with that too. So you could light it, it comes with the lighter, it comes with the lighter. I love that. Um, what’s, what’s the mantra that is currently keeping you motivated? You know, even if it’s not less about caregiving, but about entrepreneurship or whatever, like what is your saying? That kind of beats you. Yeah, definitely these days as an entrepreneur, it’s um it’s a quote from Michael Jordan, uh one of the greatest NBA players of all time. He said you miss 100% of the shots that you don’t take. And that’s definitely my mantra these days as I continue in my entrepreneurship journey. Yeah, we got to throw a lot of spaghetti at the wall for sure. And see, see what sticks there. Um Who do you lean on for support? Oh, I have um my best friend and I val we’ve been friends for almost 20 years now and I was actually just in her wedding two weeks ago. I was her maid of honor and I feel so honored and privileged to have that ride or die friend. We call each other when anything happens. Positive, negative. Uh That’s definitely who I, who I lean on. Gotcha. And then last question is, and that, you know, I think sometimes we devalue ourselves as caregivers but you deserve happiness because, oh, I would say because everyone does and even, you know what? That’s such an interesting one. That one’s really making me pause because it takes me back to I’ll, I’ll give AAA try and be a concise story. When I was in college, I went to the University of Michigan. And during college I volunteered at a sexual assault and domestic violence shelter. It’s still there. It’s called Safe house. And when I volunteered there, I can tell you that the women who I worked with in the shelter, some of these women had three kids, ran out of their house in the middle of their night with no shoes and the clothes on their back. Some of these women had such severe medical issues because their partner assaulted them so badly. I mean, it was really the things that nightmares are made out of, right? And yet so many of the women in this shelter had such overwhelming joy and happiness. They were happy just to be alive. They were happy just to have their Children and, and sometimes they had nothing else, truly, nothing else, the clothes on their backs. And so that’s something that I remember and that I, I share when we talk about happiness and the fact that everyone deserves happiness, but not only does everyone deserve happiness, everyone can find happiness even in the most dire of situations like some of those women were. Yeah. I, I sometimes think that those dire situations, you know, going back to the bleak days of caregiving as well, like when you are kind of at this level of dark darkness and just kind of reines and then something joyful happens. It’s, it’s elevated, it’s just like it’s, it’s like a diamond in the rough. Yeah. Yeah. You go for those, you seek those. And so that’s why like a lot of times I encourage caregivers to make what I call a joy list and with their care and with their care recipients, a joint joy list so that your joys can overlap. And this is like little things like, you know, what makes the least happy? Like, maybe it’s, um, you know, for me it’s, I like a wine tasting. I love a movie night. I love to play board games. Um I like to get out in nature. I love to pet my dogs. Like so the those kinds of things where you can kind of meet half halfway in the middle. And I think the more of that you put and you Sprinkle into your day, it will bring that happiness. Sometimes you kind of have to fake it till you make it. Yeah. Yeah. You know, I know that this is a little woo woo, but I do believe in the idea that to a certain extent, you know, our internal dialogue and internal thoughts really shape our reality uh for better or for worse, I think that we’ve all met some people who are a little deluded or a little bit like maybe have a very strong ego, but, you know, it really fuels them to, to make things happen. Uh And on a more like wholesome level, the opposite is also true. You know, telling, reminding ourselves of everything that’s positive, everything that’s good, everything good that’s going to come. Uh It really does have a remarkable impact in Yeah, making everything just a little bit better. Yeah. One of those things I remember is like, I was really honed in on physical self care when I was taking care of my parents because they did have so many physical things wrong with them. Uh And you say I have to, I have to work out. I have to do this but even just like a little word change of, I get to like my mom was bedridden the last two years of her life. Like, look, I get to work out like what a glorious thing that is, some people cannot do that or like the women that you’re you’re talking about. So yes, I, I love that. Well, any anything else Elise that you wish that we would have touched on today um that you want to make sure that we don’t leave without these, you know, sharing this and then how do people learn more about you and care copilot and get in touch? Yeah, absolutely. You know, in response to your question, you know, I, I know that this has come up in, in multiple different podcast episodes, but I always like to hit home with the fact that this is a very, very common challenge that people face just because people aren’t discussing it very openly. Doesn’t mean that it’s not happening, happening. One in every seven Americans are taking care of an adult over the age of 18. So this is very, very common and So I, I always try and hit home and on that and remind people about that because it’s so easy to think that it’s just you simply because there’s not a lot of visibility around it. Um So that’s the, the final thought that I’ll share. And then in terms of getting in touch with me or learning about care copilot, I would encourage people to go to the website care copilot dot co uh check us out, create an account, there’s a contact form there that you can fill out if you want to get in touch with me or a member of the team. Uh And yeah, I’m just really happy to be here and connect with you again and spread the word about care copilot and caregiving. Thank you, Elise. Thank you for all those great points that you brought up and just vulnerability today. And I’m grateful that you have taken your software engineering and your caregiving experience and really found a powerful way to kind of make a mark and help um family caregivers. Thank you. It’s my pleasure and it’s an honor. 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. This is the whole care network helping you tell your story, one podcast at a time.

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