It doesn’t matter what part of the world you come from. When you enter someone else’s home, by definition, you’re in someone else’s culture. And so whereas our systems are also trying to adapt to how do we bring things home. Uh, we know that we’ve got to be adapted, right, and understand what needs to happen.

Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy Caregiver podcast, which is part of the whole Care Network, is the show where real family caregivers share how to be happy and healthy while caring for others.

Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care advocate. Kit, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. 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. If you’d like more detail about the topics, products, and resources we speak about, or you want to see any of the related photos, you’ll find the show notes by.

Go to the website happyhealthy caregiver. com and underneath the podcast menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode.

Before we get into this caregiver Spotlight episode with Porv Bo, I first want to share a couple of announcements. The first one is that I don’t want you as family caregivers or just as crew. lover to miss the boat on this opportunity. Myself, along with several care advocates in this space are going on the self-care at Sea cruise in October of 2025, and we want you to join us.

Learn how we are going to celebrate and socialize with family caregivers on this cruise by checking out Bit. Lee HHC self-care cruise. I want to thank our episode sponsor, Crazy Compression. If you ever feel like your feet and legs are exhausted by the end of the day, or you’ve noticed some swelling after sitting or standing for too long, you might be a candidate for compression socks. I want to introduce you to crazy compression socks. They are a fun solution to keeping your legs feeling fresh and energized, and they’re gonna make a serious style statement because not only are they gonna give you that top-notch support, but you can pick out bold, different fun patterns that help express your personality.

Head over to crazycompressression. Dot com, use the code HHC 20 to save 20% off of your order. I recently finished Lady Tan’s Circle of Women by Lisa C. I have read a few books by this author, so I knew I was going to read a well-researched book and learn something new. This book is an immersive historical novel inspired by a true story of a woman physician in the 15th century China. I learned about early Chinese medicine, how Women were secretly supporting each other back then, arranged marriages, and this culture strong traditions.

What it also offers is a story about a friendship with many joys and struggles. If you like books about women’s health, choices, and a good family saga, then you’re gonna like this one. I gave it 4 out of 5 stars on my Goodreads, and I’ll link to it in the show notes. If you’re watching on the video that you can see that these are a few of the recent fines I got from Clothing swap with friends. We have organized parties in the past with my group of friends where we all went through our clothes, accessories, costume jewelry, and then we had a swap at our neighborhood clubhouse to, you know, make someone else’s trash someone’s treasure.

I remember that party being a blast and I had another experience that was similar. A friend of mine who loves to shop, went through all of her closets, her drawers and everything, and then invited a few of us over to check out what she was. Giving away essentially. All we had to pay for was the pizza and the drinks, and we had so much fun modeling on the different outfits that and sharing about the memories that we remembered her wearing something in, or she would share what she wore that for.

Overall it was a fun event where we laughed and we had a, had a great time, it was a great combination of social self-care and financial self-care. I’m sharing this as a favorite thing because maybe this is something that makes sense for you to try to recreate. In your life, even if it’s in a small way. In May, we pay tribute to the generations of Asian and Pacific Islanders who have enriched America’s history and are instrumental to its future success. The caregiving Spotlight episode for today echoes all of these sentiments.

Meet Pury Bott. She’s a dedicated family caregiver, care advocate, and second generation Indian American with deep personal and professional caregiving experience. Raised in a family of caregivers, Poorvi spent nearly 30 years balancing her career as a working daughter while managing caregiving responsibilities. In this episode of the Happy Healthy Caregiver podcast, we explore critical gaps in the US care economy, particularly for 1 and 73nd generation immigrants, including challenges with language, care plans, and services. We also discussed the concept of Shatter resumes and how the skills we develop as family caregivers not only support our loved ones, but also enhance our professional lives.

Corby shares how she built a strong care team as an only adult child, the resources that helped her navigate caregiving, and the impactful work being done by the Rosalynn Carter Institute for caregivers. Plus, we get a glimpse into what she would do if she had unlimited time for herself. I hope you enjoyed the show.

Hello, Porvy. Welcome to the Happy Healthy Caregiver podcast. Hi Elizabeth, great to be here. Early on as a caregiver, I collected things that spoke to me like quotes and and phrases and sayings and wanted to get your thoughts on this.

It says, caregiving is often not a battle that can be won alone. Remember to take at least a few minutes each day. To recharge your batteries and have the courage to ask for help. Have you ever seen solo caregiving work? Never. And I’m an only child. So if anybody knows solo all the way through, yes, what you, what you read there is very, very true. You probably had to work a little harder to put your care team together, I would imagine, um, because like you said, you’re an only child.

And would love for you to, yeah, just kind of, or some of the unexpected people maybe that were part of your care team. Just a little bit about, about my, my care journey to put it in context. Um you know, I’m a second generation Indian-American. My parents came in the early 60s, um and uh and came pre-civil rights uh for my father in 1963, and then my mom came right at the Immigration Act in 1965, and then I was born. I had cervical cancer when I was 33 years old.

3 years old, so I’m only now just recognizing as I’m both my parents have passed away now, but now realizing that while my dad was a male caregiver, there would be no cultural context that would have allowed us to see it or even acknowledge it. And I say this because one, that’s why I’m an only child. She had a hysterectomy at that point. And two, there was a, as an immigrant, and my parents were Christian, they came over from from India. I had a lot of uncles and aunties, so to speak, that were in the community.

They helped take care of me, even though they would insist that why don’t you just let her stay with us for 6 months while you help sort out what you need to do with my mom, and he insisted, no, that he would make sure I stayed with him every evening, which is exactly what we see with a lot of our male to averted fathers today too, right? But at that time, it would have been very, very difficult to really make that happen. And so I stayed with his uncles and aunties during the day and then he picked.

up and I’d stay with him in the evening. We’d go to the hospital and we, you know, repeat that for quite some time. That becomes material because I always saw those uncles and aunties as my extended moms and dads. When my dad, who had early onset dementia when I was 28 and he was 58, when his dementia began, once I had some experience with mental health and behavioral things that would begin with Dementia, which many of the folks that were recent immigrants would not have. They didn’t see their parents age necessarily every day in front of them, in another country far away, but for some folks who did have some appreciation of that they stepped in right away and uh I was a long distance caregiver, professional public health and global health, so I wasn’t always in one place at any particular time when I would come home, I’d be there, but in the in-betweens they would step in.

The surprises are. Um, uncles and aunties that didn’t touch. We’re able to come in and help with my mom. I helped my mom take care of my dad. So everything changed, right? And at that time, the community was struggling to even see aging, let alone early aging, 58, dementia, all of that was so brand new, uh, that it was, it was, uh, it was difficult for them. So it’s the second surprise. My mom’s caregiving journey, of course, began, you know, for with me, uh, 20173 onwards, but it accelerated.

Um, in 2007 when her cancer recurred. And what was interesting was in the pandemic when it really hit its stride and she was really starting to decline. The number of people that were from my work colleagues who, and I live in Minnesota, who would come through the rain, through the snow, through the cold and drop off food at our doorstep without my asking or doing anything. I learned a lot from that because of the people that were stepping in. They were giving because it, it, it was a virtuous cycle of joy too for them to.

participate and that same care that care circle continues now for me because I’m on my own and I, and I stay close to the ones that are here. The last one I’ll say that was a surprise was a workplace related one. I was an executive at Levi Strauss at one time and my dad’s dementia was ongoing and my mom’s cancer began in 2007. It was that leadership team that was well before hybrid work, and it was that leadership team that understood. And allowed me to work virtually from home in Chicago at that time and be able to lead a global role from Chicago and then come back.

And even when I pulled aside uh our CEO at one point and just said thank you for allowing me to be in Chicago. Um, I don’t think, I don’t think the team in South Africa cares where the phone call comes from neither do. So we just keep going. That kind of affirmation goes such a long way. Those are surprises, right? You know, you don’t see them often, and that is part of the care team, are those really incredible managers and teams that come together for you, um, it’s a win-win.

I mean, you have a you know a lot of skills to offer the company and to, to make it easy for you, um, it’s, you know, as easy as possible for you to continue working while you were juggling all of these things is certainly, certainly a gift. I wanna go back to You know, you had mentioned um Poor that you are a daughter of immigrants, a second generation immigrant, and you’ve shared the care and you know, and aging is a new experience mainly for this new phase of immigration in the main tree systems like the timing of, of when your folks came over here and that they may not have had or even have today things in place for, for these immigrants can share examples of how that US has.

Gap potentially there in their support for immigrants and their caregivers. Sure, I think you know what’s important to think about with all of this is, uh, is culture. So you know we’re in an era now where we want to age in place, we want a hospital at home, we want everything to happen at home, and when that’s going on, it doesn’t matter what part of the world you come from when you enter someone else’s home, by definition you’re in someone else’s culture. And so we as our systems are also trying to adapt to how do we bring things home, uh, we know that we’ve got to be adapted, right, and understand what needs to happen.

What’s unique, at least in, in my experience, what’s unique is when you’ve got a second generation who’s trying to take care of a first generation. And so if you put, and I, I started here earlier, but if you put yourself in our shoes, our parents came in there in their 20s, um, well mine certainly did and They came here to work. They came here to do a lot of things, um, and by virtue of making that trade off, especially in those early years, they, like I mentioned before, they didn’t see their parents.

They wish they could have, but they didn’t see their grandparents and grand and their own parents age, uh, in the ways that we do today when we’re living together in community here in the United States, right? So they can only imagine. And that had its own pain associated with it, right? That, but that is replicated now for every first generation that comes without their family with them, right? Is this feeling of distance and then realizing time is moving forward, they’re not seeing what that looks like. And if you’re here and if you’re a child of those parents, you’re also not seeing your grandparents get older in front of you, which is also helping not giving you the opportunity to understand what are the rituals that you need to do, how do you take care.

Uh, in a time when, you know, uh, uh, you know, uh, families that live together, right, multiple generations together are more a part of certain cultures, um, and so when you’re in a nuclear family kind of setting here, it can be tough. So all of that was the backdrop and then when it came closer for care for my dad, it was memory care. And how do we even consider memory care, uh, noting that for many folks you go back to your first language, as your memory starts to fade, everything goes back to the beginning.

People know that right in their own experiences of how it goes. So if you are English as a second language, going back to the beginning means you’re gonna be. More fluent, your thoughts are already coming to you, probably more so in your original language than in the one and then in English, right? So you’re always translating, but at that point it’s harder and harder to do. So there’s an issue of translation. So when you go into institutional care, there’s a lot of work that goes into making sure people understand.

Uh, oftentimes there are religious things, cultural things that aren’t always a fit, uh, and that can make it, uh, challenging. Because uh you participate, we always integrate, so we do our best, but as it’s getting closer to end of life and the rest, there’s needs that are there for every culture. And every ethnicity and every faith and so the mainstream truly understanding that even using language that allows for people to lean in is helpful. When we use words that are coming from different faiths, even though it’s meant to be inclusive for all, people may misunderstand and decide that that’s not something for them.

A clean example is for home health and when people come home. So imagine if you have to take your first medication of the day with food in the morning. So my family’s Hindu, so that means, um, waking up eating rain before you eat. So what would that mean? That’s the norm. That’s the norm, the culture and the faith that that you come second to what you need to do for your faith. So after put that inside of. Skilled care at home, it’s really reshuffles how do you need to organize care at home.

On you know that it’s, it’s really functionally it’s the same things you need to do, but you may need to come earlier to help with bathing. And if you can’t, now this is where the family caregiver feels the pinch because there’s a conference call that someone needs to attend. They need to be able to step away and do all of that. It can feel burdensome. When in fact when you’re pulling away to spend that time and even that quiet time helps with your own self-care too, right, because you pulled aside.

And now you’re, because for us faith was a part of it, you’re sitting quietly with her or him while they’re going through the moment that they need to go through before they eat. There’s a lot of those kinds of things that are that really are about meeting standard of care, but you have to organize a little differently to ensure that it’s meeting what people would feel comfortable in to be able to stay compliant, right? Yeah, I imagine there’s. Some questions that people could put on their, their intake forms and their care plan forms in order to kind of better understand those nuances.

Even for my mom, I had to almost teach her how to advocate for herself when she got in assisted living community because she just wasn’t used to really kind of using her voice in that way. All of those nuances really help are important because that It is critical to making someone feel comfortable in those environments and if they’re comfortable, then that’s gonna be more successful, which is gonna help the, the working caregiver, the family caregiver who’s trying to, you know, put up the scaffolding behind the whole care situation.

I, I really appreciate you kind of sharing those examples of these things that seem little, but they’re, they’re a big deal for sure. We also did have. As much of a groundswell of support for, for Alzheimer’s and dementia at that time, you know, it was in the 219s, so um very different because, because now we’re in a different era where the demographics are different. And so at that time, even where he was going for memory care, you know, they would have Easter services, right? They would have have um Hanukkah.

They would do a lot of coloring and a lot of things so then he participated in everything, right? But finally, because my mom advocated for him, they figured out how do we take him and a certain family out to the Hindu temple so that he can have his experience. Now was the temple ready yet? No, so that’s the next thing is also how to get our communities because again if you’re in a young, uh young in the sense of just starting to experience aging, there’s a lot that needs to happen so that even The, the places of faith that we come from or support community organizations are starting to adjust so that they’re ready.

It’s happening quickly now. um, it is, uh, but we are in a moment where we could, we could run the risk of siloing out. So getting some the right things to happen in a mainstream way maybe more. Efficient for everyone. For example, I, for me, I don’t think I would want to be in an all Indian American assisted living when it’s my turn, because I in an integrated environment, right? Maybe I’d want a dosa or a curry, uh, every couple of weeks or something as part of the menu, uh, but not necessarily 213%, uh, but what’s great is for people who do want that, that is starting to grow now, uh, in the extended way.

Now that’s happening across every cultural group. But it is something to keep an eye on because, uh, because there’ll be more and more second gens, and when that happens they may or may not want those, and we do want a system that can handle and and run efficiently across all of us. Yeah, it’s got to be scalable, but get personalized, so you’re kind of, you know, weighing weighing these things. Is there anything else that you would like to kind of see happen in this space specifically to help support, support your culture?

Sure, um, so one of two things one, food. So the third thing that I could give an example of is in the height of the pandemic, my mom went, had to go into the hospital, came home, she was on uh a Medicare Advantage plan, which was great, and it had, you know, OK, you’re gonna get 24 days of, of meals that are gonna be sent home. I’m like, OK, that’s awesome. Here’s the menu. Great. What are the vegetarian options? The only thing at the time. was uh oatmeal.

And in my overwhelm, which all of us can can appreciate, someone’s coming home, home has to be ready. Home is nowhere near ready. We can all say that. So I’m in my flurry trying to do it and I said, fine, just give me the 2100, just give me 224 of those, right? I had a garage wall full of oatmeal meals because it wasn’t something we could do, right? And so, Some of these vendors that are really trying to help, uh, put together healthy meals, getting some ethnic mix in there because I think our society today is starting to enjoy different kinds of food, not just for one ethnic group.

Yeah, I would want that. I love, I love to explore all kind of there you go. So there was a couple of options there partnering with some other folks that are in. You know, who are producing those foods for the, for the ethnic community and then starting to offer that. I mean, it’s also business smart. You’re gonna get more people signing up for your plan because you’ve offered it, right? So that’s one, and that even flows into the hospital, right? When you, you can get a pizza and a burger sometimes at the hospital, right?

I mean, it’s kind of, it’s kind of wild, but not necessarily some healing foods that might come from various cultures, not mine alone. And then the final is sometimes the use of of terms. So for example, the word chaplain. So the word chaplain implies for even though we know the training is in spiritual healing, but the word and, and the entry of of the professional can imply to some that this isn’t for me. And so the comfort that is intended can get confused for people if you’re not, if you assume it’s for a certain faith or assume it’s for a certain population, and yet it’s.

It’s the option that’s offered from bedside in the hospital all the way to bedside at home in your final moments, and not all, not all home care and end of life are as well versed yet in what’s necessary in, in, in these final stages. And so even the integration of understanding or even bringing someone from different temples in with you, you know, when you want to go into the hospital, I recall, you do say what faith you are. There’s a reason they know. It’s just they know exactly who’s where, so it is there may be a way to plan for it.

Is there a better word, like a more inclusive word, Spiritual healer, you know, spiritual comfort, even if it’s not spiritual, if there are people who may not have aligned to any particular faith but need comfort in these times. You know, I think lying in that way allows us to, to get the best of it, and that offers respite for the whole family, right, because when you have that experience, it’s not just for the person at the, uh, in the bed, right? It’s piercing around the bed too, and how to, how to benefit all the way around.

So these are simple things that if, if you’re thinking of the family involved, even making some tweaks that I’ve heard that some of the home care agencies and hearing these, uh, one of these examples, the timing of when people bathe and why. Um, was already communicating. It’s like that we can, we can try it, right, so that be open, yeah, be open just yeah amazing. Thank you for sharing, sharing that. You’ve had a wildly successful professional career. And your adult life though, you’ve had the what you call um a shadow resume that’s not seen on LinkedIn.

What, what do you mean when you say a a shadow resume? You know, recently, especially since I’m a former caregiver current grier, so now I’m in a different chapter, uh, it’s still a valid chapter. The chapter after caregiving ends. Is its own stage of stuff, yes that’s a whole other. Yes, a 27 podcast on that one. It is, it is, um, just to cap that off, when the caregiving ends, you often wonder where does the care go next because you don’t, that part has just gotten so awakened, right?

And, and it’s, it can be challenging. My little dog gets a lot of it, but that ends up being something about that chapter. What I was um surprised my younger self was able to do. was when a lot of this began with my dad, so I’m in my twenties, right? So I’ve made a lot of decisions. I didn’t marry, I didn’t have children. I decided that I needed to stay focused on my parents, but in order to do that, well, I needed to be very vocal at work.

So what I was doing, and this is part of the silent resume without realizing what I was doing is I was saying that I’m a working daughter. Before working daughters you’re seeing it now, it’s used so often, but at that time it was the early 903s, there was so much for working moms. And I knew that that wouldn’t be an identity for me and that there wouldn’t be a structure at work that could recognize that this is something that needs to be built, you know, working moms have, there’s a, there’s a community of that.

There’s even runways to help people come on and off, right? And none of that today we talk about it differently, right? But at that time, not at all and so much so that I would bring my cell phone into interviews. And be very specific about saying my, you, your cellphone’s here because a kid might fall at a soccer match and you need to be ready for that. Mine’s here because my dad might wander. Both of us are gonna need some grace when that time happens. How was that received when you said when you said that like working daughter, especially cause you were saying that potentially when other people, um, you know, weren’t using, using that, how was it received and, and was there an environment, was something needed in the environment to make you comfortable saying that?

How do, uh, if you back up and you see where my, my career began, it’s in the HIV movement before HIV was really uh known to be what we know it to be now for the most part and Um, so speaking up was a part of what I was doing. Uh, you’re like, here we go, one more opportunity. Uh, so I was doing it, uh, as an ally, um, and professionally figuring out how to move assets to outcomes for that. And if you just for a quick segue, if you think about what was happening then, especially around the world, uh, there wasn’t anything you could do.

Uh, people were, uh, at home who needed care, which meant kids stopped school, came home to take care of those people. Parents came home, grandparents were taking care of those kids, and folks who were sick at home. So if you just tele telescope out from that for a second, doesn’t. that feel like what’s going on in a different way right now trading all and trying to take care of people that they need the flexibility. You need the flexibility. So I was in that space of work, right?

So I tried to bring it up in those in those settings. how people responded was they paused and said, what is that? And then I described what it was. And then for those who felt comfortable, and there were many, they were like, well, I’m doing that too. Yeah, me too, me too. And so that started some conversations. I wouldn’t accept. I figured if I was interviewing with that, then then full disclosure, you know exactly who you’re hiring. So when the time comes when I might ask for some flexibility, it may be met without surprise, um.

I didn’t know what FMLA was at that time. I had to use it a few times. I had to use it in some settings where there wasn’t comfort, even though I did all those things. And my mom was, uh, I use it off in her quote. She said, all of you who are trying to do so much for others around the world, you don’t seem to take care of each other very well. Well said, mama. Yeah. So I was like, wow, she’s seeing what’s going on, right?

And so. That uh gave me pause and more courage because she said it that way. If I fast forward to my time at Nautronic, you know, I was blessed with a lot of news just like I my days who took care of us and knew us because, of course, uh, we were open about it and it was in the Twin Cities, and my mom, my mom and I lived together for 290 years, um, to for me to take care or for us to take care of each other and Uh, because I grew up in the Twin Cities, she knew where we were around, and so she was my plus one.

She came to everything, you know, they all kind of, uh, inherited another mom in the circle. Uh, but when in the early days, same thing, I was talking with our head of HR at that time and said the same thing. I’m a working, I’m a working daughter, the same thing I had been doing my entire career. And she said same thing. What is it? And I told her and she goes, so am I. And what she did is there was a big meeting that hundreds of people internal meeting that we were all in in a big auditorium, and she was giving a keynote.

And then she went off script and she said, you know what, I’m not going to be here for the entire meeting. Actually, right after I’m done here, I’m leaving because my mom is scheduled for hip surgery in a different state. And then she pointed to the CEO and said, and my boss is sitting right here. And I texted her I said, you just made it easier for so many people live by the example, right? So this resume is a part of the courage of breaking the compartments down and bringing things together and a lot of the other things were.

You’re basically just sorting out knowing your benefits alongside, right? You don’t see that on anybody’s LinkedIn, um, or knowing how to handle a crisis. You know, most people, at least in the industries I work in, given its health, right, is really understanding how to predict for risk, um, and pivot quickly, have people around you that you can trust when that moment comes, right? If you really think about who gets really recognized as they’re moving, the ones that can see it before anyone else can see it, right.

Starts to plan for it and starts to get everything organized so it doesn’t disrupt so many things. I’m, I’m pretty masterful at that. There’s self-care that is needed because there’s so much only so much of that functional anxiety that can go, but that’s been built for years and that’s, that is in the resume, but where did that come from? It comes from this, and that’s the part that we’re not recognizing is there are incredible skills that are going in both directions. I knew how to figure out the questions around.

Pairs and the rest because I’m trained to know that so so many skills. I mean, I would, you know, we would hire a caregiver in a minute because we know that like to vocalize those things is as important as working daughters and working caregivers, um, and you know, recently I just, I shared this with you. I put on LinkedIn like my caregiving year. I’m still a caregiver. I’m a support caregiver for my brother, and there is, you know, been some seasonality to care, but I think. You know, making that, being proud of it and like, and putting it out there because it is, there’s, and the bullet points, you know, underneath the, you know, I learned um uh diplomacy and, and problem solving and teamwork and Um, how to handle a manage a crisis, how to prevent and mitigate a, a crisis, how to manage competing priorities.

Like there’s decision making. There’s so many different things that you’re looking for in your leaders, um, and so, you know, you don’t just have to learn them in a professional setting, not at all, and I would just also say the flip side as many. of us who kind of are stepping into the care infrastructure, the care economy, the care ecosystem, whatever you want to call it, our expertise isn’t only that we have been caregivers. It’s also all that training that we did before we decided to step in here.

So the whole, the whole thing needs nothing needs to be in the shadows. It all needs to be together. So how do we bring All of the skills in that are necessary and I’d add to your list is teamwork and knowing how to manage a team and when to dial up the right one at the right time, right? That’s so much of what we do in our professional lives and in our caregiver lives. So and that’s right now what everyone needs. If I can figure out how to get telehealth to work for an elder in my, in my family.

Then that scale is what’s necessary everywhere right now when we’re trying to more and more with, with technology, right, and, and how to scale it and how AI have to sell it to them sell it exactly and how to make sure home is ready all some of those cultural things that may require different language or may require a way of thinking through what’s what’s necessary if, uh, if I have a client that happens to be of X, Y, and Z. AI could quickly at least get, get a care team up to speed and understanding like how do you learn that?

And then that leaves us feeling trust immediately because someone came in and knew how to take their shoes off right away when they entered the door and like, oh my God, I don’t even have to say anything. All of that is, is part of the skill set that we know how to use. So it is an intentional thing. Um, it can be hard to do because it’s not always easy to explore what was going on all along. Um, put former caregive former caregiver and turn grieverers is a bit easier because it pulls support that I need now because I’m in a grief journey.

We all are, right, but that is, it’s different than during the time. I think we should all band together and help like LinkedIn figure out how to do a drop down so that it’s, it’s allowing us on there. Well, there’s 280 million plus just in the US alone, so like we can, we can certainly put the pressure on, but I think that’s how it starts. It’s just, you know, starting to, to talk about it, make it, make the invisible labor more visible. Very, very much so. That’s something and Mrs.

Carter always was, uh, very big to see is, uh, make the unseen scene. I was curious like how care caregiving has changed you personally and professionally, but I’m like, Well you’ve always been one, but has there been some changes that you think you can accredit towards the caregiving experience that you’ve acquired? Patience. That’s why I, I, there’s some positive things that it’s, uh, recognizing. The gift that it was, right? It was a beautiful gift. Again, I wouldn’t have seen it while it was happening to the same extent.

The one time I finally did, as odd as it is, is when uh the pandemic hit and we all went into shut down. And remember how fast people were trying to get to assisted living? Sure their loved ones were OK or to bring them home. That was the first moment I’m like, oh thank God we’re already together, and all of those. that I might have felt I was trading because my friends were able to go do things and I was, you know, I had to sort through how to, how to do things while I was also taking care of people.

Uh, in that moment, I’m like, oh my God, this is amazing, we’re all in the shared experience finally. Yeah, there is something about just appreciating that the, the intergenerational relationship we have with each other is precious. And that I not have seen while it was going on. I did finally see in the final years with my mom. I did not see. I wish I had with my dad. It was at a different time of my life too, um, and he took care of me my entire life, so it was very hard to face that, you know, we were all prepared for my mom, not at all for it to be my dad.

And so that was hard. It’s now that I’m starting to face that. Like I mentioned, I only, I only recognized that he was a male. Caregiver recently um and what that challenge and pressure may have been. So caregiving taught me to look at things now from a different lens and my empathy, which I think was there more than I realized, but all along, but now it is very, it’s very prominent. I come to tears faster than I used to, right? There’s a lot of that just softness, uh, it takes.

To be able to do what we have to do now and, and if anyone is gonna be part of the caring society to shape it and create it, it’s got to be us because we’re gonna have this more than Skittles. We’re gonna have we’re the experts for sure, yeah, and the expertises of the heart and the brain, right, um, and how you try to bring this together. I’ve often been on calls for people who are who are. Who are professional and professionally doing things in the caregiver space to say we have to get comfortable owning where we are in our own caregiver journey to legitimize why we’re in this because we are all in this one overly professionalize it it distances us and you know, and if we don’t professionalize it then it becomes just storytelling so we have to find the right middle ground.

But the first is to just on and talk about it the way that those leaders that I gave examples of were willing to do at work. So I’ve learned a bit more about that and Um, where were those skills coming from all along? And it was coming from, from this and what my parents were teaching me through their vulnerability. So many, so many lessons and so many things that we can kind of You know, take, take for at the time, you know, we didn’t realize, you know, some of those things, and, and we were missing out and maybe grieving some of the things that we’re lacking, but two things can be true at one time, I like to say it can be both hard and beautiful.

You know, when you were caring for, you know, your folks, what were some of the resources that you found? to be beneficial for you. Friends, because at that time, especially with my dad, it was so early on, and so a lot of my friends and my friends, because I’m in in movements, global health movements, they tend to be very like-minded and so when they saw this, they would step in. And at that time, if there were services that were there, there weren’t many. Um, but there were a few, uh, they would introduce them to me again, we were not familiar with this part of the system because we didn’t see it yet, right?

Me neither, and I was, you know, supposedly in the culture just felt very, felt very fragmented and lost, and I wouldn’t even know where to begin. And so they helped quite a bit, my colleagues at work and the rest. Like I said, I didn’t know what FMLA even was until someone broke it to me. So friends were resources right away. Um, as time went on, so much so that um You know, I, I, I’m involved with Caring Bridge, for example, right? Um, yeah, tell about Caring Bridge.

I know what it is, but just in case someone’s listening, sure, sure. So Caring Bridge began, you know, uh, 280+ years ago, almost 30 years ago, much like the Rosalyn Carter Institute, one of the oldest, oldest responders, uh, serving the caregiver population for Caring Bridge, it’s, uh, notably the first, uh, platform that allows for communication. Before Facebook, before LinkedIn, for all of that to ease communication and information sharing and offer support, and the mission of carrying Bridge is so no one goes through a health journey alone. Yeah, we use Caring Bridge.

It was, uh, yeah, so as for my large family and in family, it was a great way because it’s like that’s another role, right? of caregivers is like you gotta keep everybody informed and, and, and you’re just constantly feeling like an, an operator. On that and it really, it really did streamline that. so it’s like, OK, I can post it here. I can share this here and it’s two-way communication where, you know, uh, my parents could benefit from the notes and things that people were saying. Yeah.

And in my instance, even though I knew all of that and participated in all that, and then, uh, been on pages doing as someone trying to support someone else for for years when it was our turn, it took a friend. To say, don’t you think you should start a carrying bridge page? And I was too overwhelmed. Here I was involved with the organization started a page yet, right? So that’s support of someone else seeing here are resources. I use them. You’ve helped other people use them. You’re just not seeing that you need it now, right?

They still then. And, and got us started and um so that was helpful and I will say on that one, what was tough is back to the 1st 2nd gen uh immigrant piece, uh getting a whole new generation, first generation immigrants to learn how to trust a platform versus aunties and uncles texting and trying to call me, what should we bring for food, even things like meal train and all the other things. It took a while. To get everybody to know this is the only place that you’re gonna get information, right?

And that I think every family probably goes through that. But for this one it was tough, but where it helped was family all around the world could then come in and see what was going on. My mom, to what you’re saying also with your parents, they could see, even if they didn’t have the wherewithal to read, they could see that everybody was there. And then finally, in my Mom’s final moments, I was able to put, you know, the, the, the music and the rituals and the chanting that we would need to do and that it will, would be helpful if everyone would join us in doing that wherever they were, and they did.

There were plenty of like a collaborative effort with the spirit and so those kinds of things are incredibly incredibly helpful, um, and that was for us that was an incredible resource, you know, I happen to have a great benefit. at the time it was wealthy and I’m also an advisor for them, uh, in full disclosure, but because of this was, you know, as soon as this was picking up during the pandemic and I was still working at Medtronic, we happened to have wealthy as a benefit. And it took a minute for me to figure out how do I use this.

There’s a lot of resistance in starting because you can’t, it’s hard to acknowledge this is happening, right? It’s an investment too. It’s like. You know, and, and I’ll, I’ll link to wealthy so people can, can learn more about it, but it’s basically a benefit platform. It’s like a, a, a bolt on benefit platform for working caregivers. It is for employers to participate in, uh, in an offer, and it’s a they off it and it has care navigation as well, and that is something having gone through that whole, uh, you know, a barrage full of oatmeal.

OK, you’re never gonna want to eat oatmeal. Yeah, I like Minnesota, you could leave frozen food in the garage, but at that time it, it was a moment of, OK, you have to get help. This is, you don’t even understand the system. But it took me thinking, how am I gonna get this to work for me and I, and I basically was like, all right, pretend this is a project manager on your leadership. and delegate to them like back to use what you know as a way of getting the best of the resources that are around you and we’re so good at doing that at work.

I share that in some of my talks with working caregivers because it’s like, and it’s, it’s kind of like it’s not common sense, but like you say it and people are like, oh, like, yeah, you’re you’re the project manager, you’re, you do. All the time in your day job you’re trying to fill the gaps and you’re trying to make sure you have the strongest resources and and noticing where you need to maybe hire out a third party exactly. And so when you do hire out a third party or hire a new project manager on your team, what do you do?

You let them source out all of the options and come back with a recommendation that you can talk about together. And once we got into that rhythm. Oh my God, what a relief. I, uh, it allowed me to work two extra years. Wow, yeah, because it completely helped when I could see RID and I knew how to make decisions that way. I did make decisions when there were a million options, but when it was narrowed down with someone I. Trust it and I could go back and forth.

I was able to do it. So there are many groups that are like this, right? I happen to have a great experience with wealthy also with others that are there, Kara Loop and the rest. Every one of them is offering something really powerful in their own way. Uh, and it’s really important, but to access it, it requires, you know, participation from others and, and a really important kind of next horizon spaces to figure out how can we offer more of that to nonprofits. We may not be able to afford as many benefits or public sector or direct to consumers so that if I all of a sudden needed it as a consultant, I could figure it out for myself, right?

I mean, I, I, I share my services as to I work with a lot of companies. And some of them aren’t ready to kind of invest in a, in a bigger platform and so I’m like, let’s, let’s see how much engagement and interest you can build, you know, working, working with a solo printer like myself, like let’s just kind of get the conversation started, the education, the, the panel events and things like that, and then Um, sometimes, then I think that can be in a light bulb moment.

I’ve, I’ve been pleased to kind of speak for companies where then they started an employee resource group for, for their company. So sometimes these things can kind of be, uh, a catalyst, which is amazing. I mean that’s how, that’s how change happens. It’s like a little, little slow bits like that. Well, and I’ll just add, and it took me a minute, um, to really remember and realize this. comes from every sector. It’s not just companies. So there is an important self-reflection for all of us in the care economy.

Are we taking care of our own in the same way that we’re out helping others take care of their exactly. And that that moment is when some of these things come up. So it’s hard. I mean, if you’ve got to figure out something that’s going to work that people can lean in on. But that comes to authenticity of first owning where you are in your own caregiver journey, right? Mrs. Carter has a famous quote about four kinds of people in the world, not just caregivers in the world, people. Right.

And they range from planning to, to be a caregiver, having been one before, currently in one, planning again, right? All of that, all of that is in those, in those four kinds, and that’s the most inclusive quote you could find. Yeah, and love that quote. We’ll, we’ll put that in the. And the show notes too, yeah, well, she was helping caregivers of, um, Rose, uh, Rosalyn Carter long before other folks and so the, the Rosalyn Carter Institute for caregivers, and I remember when they added that for caregivers on it, um, is, you know, I know you’re, you’re working with them now, and so what kind of help and resources do you think caregivers can find through the, the Rosalyn Carter Institute for caregivers?

Sure, well, listen, our, our vision is so that all Family caregivers are seen, heard, and supported, and you need all three. And so you know we are in unique positions in different places where we can help that seeing and hearing happen and then connect dots so the support can happen too. and that is important because of who we represent and where our history comes from and her own story, even President Carter’s story of what brought him back to planes. So what we offer is There are a couple of things.

One big thing is we’ve worked very hard with Duke University in creating something after all these years of being in this space called caregiver profiles, and we uniquely frame family caregivers as those who are who are taking care of those who are aging, those who are ill, and those who may be experiencing a disability. With that in mind, we looked at published research that had happened. Over the years, uh, over 10,000, almost 13,803, uh, published papers because caregiving going around for a while, as well as some focus groups with caregivers themselves and came up with a typology of 10 different, um, profiles experiences of what caregivers go through irrespective of what is happening with their care recipient.

So this is the first step of do you see me. If you follow us on social every week, we’ll pro we’ll lift. Up a profile and see does anyone relate to that. Oh wow, yeah, it helps people be seen, but it also, if, if we’re looking at it more concretely, and the next step is to try and test these, is to say, listen, if you happen to be profile 13, and 6 because you can be multiples, is there something going on with you? Is there, is your stress higher?

What’s going on for people who might be just getting started in caregiving now and managing a crisis? Is there You knew that like a demographic of toggle box that you could just check off and then you see, well, you know what, there’s a whole lot of folks who happen to live in rural areas that are sitting in this profile. What does that caregiver need beyond what the recipient needs. And so we feel really strongly that this is almost a public good for all of us to see what can we learn from this and then apply it to the work that we have now, you know, you may have seen at the end of August, CDC MMWR.

Uh, morbidity mortality Weekly report, uh, released some data. Uh, they were comparing caregivers and non-caregivers across 19 health indicators. 13 of them caregivers were disproportionately doing worse than non-caregivers. So I’m not that doesn’t surprise me, but it would surprise people who who have not been a caregiver. Yeah, I raise it because if you knew what experience, what profile are caregivers going through, and you might be able to see, you know what, um, cardiovascular risk is happening the greatest in these profiles. You might be able to intervene. So there’s all sorts of things with these profiles that allow support to show up when it’s most needed, and we can’t right now we see the.

caregiver, if at all, through the care recipient, and, and then we’re organizing everything so that caregiver can be the most helpful in the least pressured way for the care recipient. Yeah, like let’s use them instead of them being invisible, you know, if they feel like they’re the nucleus of everything that’s going on in the center of the hub, you know, and I, and I also feel like, you know, we get a diagnosis or, or something when they get a di like it completely changes the dynamic of, of everybody.

Around them, so yeah, I can see the power for sure of these profiles, and we’ve got to make use of some of these tools because it’s only going to get more and more strained, right, as we are not that, uh, you know, aging adults is synonymous with disease and everything, but we are outnumbered already of the people. who need care and we’re filling in the gaps more and more with families. Like, I just recently had to do something with my brother, he had a, a bladder stone and we’ve had to go through these tests and he’s got a, he’s um neurodivergent, so leans a lot of like, they sent this home kit um that was so involved.

I was like, you know, in, in my neurotypical state, like reading the directions over and over again and setting up the FedEx pickup and all of that. Like, I can’t imagine. Like, how, you know, how did we get here where we’re pushing so much back on the families and the family caregivers to fill the gaps on these things. I just, it was, yeah, it was a lot and there’s, that’s one example of many situations that I’m like, why is this gotta be so hard to the point where I’m pushing back on the medical team to be like, is this really necessary?

Like do you know what’s involved with to make this happen? It’s crazy. It is nuts, and I think at the end of the day, even in the being heard and seen part of this. Is where it could change it clearly a caregiver, a family caregiver was not involved in the design of that product, or in the design of the instructions, right? That’s only ramping up as more and more aging happens at home, hospital at homes, and we all want to be at home when you’re the one that is not feeling well, you just want to get home.

That said, if home isn’t ready, then it’s not to figure it out in the aftermath, right? It’s to figure it out as you’re designing it. And so I would say a really big important step now is to make sure that one, if we’re all on, on that 4 kinds definition of caregiving, that even if you’re at work designing something, please wear the caregiver hat for a second. You don’t need to. have a specific, it’s just like we’re all patients and we’re all caregivers. We can try and like go and watch this actually happen.

Exactly like, could you do it for a second. Could you do it if you were with your, with whoever you think it is is in need, right? What if you were an immigrant to take that test, you know. Happen probably poor is they would just like put this box aside and then like this isn’t gonna happen. It’s not and then until someone comes and says, hey, what is that? Yeah, doing something 100%. So there’s, there’s a lot of that that’s uh that’s a part of just helping those connection points come together.

Another area that we’re lifting up is that we’re really leaning in on data. Uh, we’ve been very strong in saying evidence-based work is really important. You saw me reference what the CDC said, right? I think more and more of that. That’s back to what we were trained to do, right? When I was trained as an IT professional, like we make decisions with data. Yeah, so, yeah, there you go. So you know, we’re privileged to have had data for a while because we’ve been around for a while.

So the team has been working. Working hard to excavate data and see if there’s something that we can offer whether it’s on rural caregivers because we don’t know enough about what happens if you’re not in an urban area and for folks who are, but their parents or or who they’re taking care of happen to be in a rural area, it’s a whole other level of strain, right? As a different as different storefront options are are falling away. Walmart Health, pick any of the things that came up, people make it.

Right decisions for them, but in the end something may, may be a trade again. And so can we and given where we’re from, right? Is there anything that we can offer in the data that we have that could be more instructive on where we could consider going together as a community and we’re looking for more folks to join in that. So that’s another area that we’ve been doing a lot in. And then finally, really thinking about the systems that we all rely upon. There are a lot of folks in healthcare, so we know that that is happening.

We’re asking that listen. Uh, when, when you’re, you’re the person that you’re caring for is, uh, entering a clinical facility or starting Medicare or whatever it is to have a place where you can, they can say who their caregiver is, so at least it’s on record so you can begin, right, the simple, seemingly administrative thing, but then in the end you can search for us then, right, um, if you’re on the same, if you’re on the same payer plan, you might be able to get some of that healthcare at the same time because they see you, right?

So all of that. Um, but in addition to that, what about the other systems that we need? So we’ve become fairly well known for disaster preparedness and plan making sure caregivers are prepared. And what that means is, and, and I have to say it for all the preparation I had. Um, I did not cover this one, which is my mom’s on oxygen, uh, we live in Minnesota. If there was a tornado. Do I have a tank close to the car if we needed to get somewhere? Is there one downstairs?

If we needed to get to an evacuation center, would they all accept us, or is there one that I need to go to specifically? All of those things require planning. But if I run out of this, yeah, I mean, we, my mom lived in Michigan for a minute with my sisters. Yeah, I had to get a generator. She was, she needed oxygen. 24/7, like, yeah, big deal. It’s so, I mean, power goes out often. So there it is, right? So and we’ve all now seasonal things aren’t so seasonal anymore, right?

Look at what we’ve all just gone through with polar vortexes and in places that aren’t used to it, wildfires that are going nuts. I’ve been on some of these calls and said, you know, when everyone’s got, uh, a lot of compassion for where others are. Um, and what those caregivers are going through. I said, you know what, but this is the time in addition that we should be checking. Do we, did we plan for if it happened here? And the first thing that comes up is who wants to think about that right now.

And we’re so bad at it but this is where something. Could be helpful. Maybe there’s AI or a way for a plan to come together, and then it’s inside your cupboard the way where the DNR stuff is peace of mind, peace of mind that it’s there when it was our family. I’m like I have a sticker on the window that that tells everyone we have a dog in here. But there’s nothing to say that we’ve got some we’ve got someone who’s going to need additional bedridden like my mom like yeah and I was a traveling caregiver, so I’ll end on this one.

I was in here in California. Uh, during the 2017 fire in Santa Rosa, the first big wildfire that everybody witnessed, and my mom was at home, and I barely got out and I was thinking, oh my God, um, what would happen if something happened to me? I don’t know that we planned all of this. And when I got out, we, our team happened to rescue a 90 year old who was separated from her family. Same thing, that poor daughter hadn’t figured out what happens in this time, right? So, so it’s a storytelling way of really locking in on the other areas that we play in are this other systems that most people aren’t thinking of and this is, is, is very tied to, to the, the Carter legacy as well, where you would expect us to be, um, with the integrity of data.

With the honesty of what we need to talk about and things like, like disasters and relief so grateful for the the work that um the Rosalyn Carter Institute is doing. We talked a little bit about your, your self-care. You, you mentioned in particular like your friends and your social self-care. I wrote a journal that had caregivers in mind called the Just For You Daily Self-care Journal, and I wanted to ask you a couple of the questions. What’s the last thing that made you laugh out loud? Really sitting with friends and making fun of something that was going on.

I mean, I can’t even remember what the joke was, but it was being with friends that I would always laugh with or going back in time and telling a story from something else, but it required having, having my friends around me and you gotta, you gotta get there. You gotta make it happen and make it happen. So caregivers are known to be the hub, and I will just say in the in the post-caregiver moment. I tend to be the one that that pulls the rally cry, right, and says, OK, let’s go do something together, turn on the fire pit, hang out, and then Just, just storytelling and my little dog, he does something, his name is only, he does something silly.

Yeah, they’re funny. My main thing though is I love going to big concerts. So when I finally was able to go and not have to figure out care, right, just go to a big stadium concert. That is the best thing for me because we’re all there, we’re all presumably happy to be there. It’s thousands of people, you’re singing out loud. No. cares if you can say all good energy pointed in one direction and so it is, it is a big part of my self-care is being with other people but all pointed in the same direction.

 

And for me, and I’m from the Midwest stadium concerts, I’m an 80s girl, right? So all of that stuff is is tied in all of it. So that’s, I spent so much of my money in the 80s. I worked at Hallmark and I spent my money going to Turtles. was the big place in Atlanta. We used to go by, we did camp out for concert tickets. All my money went to crack, right? Yeah. But I, I love, I’m with you. I love live music. OK, last question is, how do you unplug from technology?

Yeah, good question, because I don’t do. Are you still figuring it out? Yeah, what I, what has helped me in all of this, um. is when my mom died, I had wrapped up at work, right? Everything was done. I had, I had taken a minute just to kind of get refocused, and I had a leadership coach, uh Paruadia. She was wonderful, and she said she could see that I was struggling, and she said, let’s go back to an intake question. And I said, OK, which one? She said, I have one of your intake questions, so what would you do with unlimited time?

And I said, how did I answer that? She goes, well, guess what, you now have a form of unlimited time. She said you’d be in nature more. What did she say? She said, I said, uh, that I would be in nature. I would experience nature more and I would experience the live arts. So there you go. And I will tell you those two things I try to do, it’s hard, especially now that I’m back at work, um, but I, that’s when technology stops for me behind a car and I, and I can drive, uh, in rural areas where it’s spacious, that helps a lot.

By the time I do that and come home or take a long walk with my dog. Uh, or go to a concert or get active in the arts, right, do some pottery or what, I’m not good at any of it. Who cares, right? It doesn’t matter. I’ve come to enjoy, uh, flower arranging because my mom would get so many flowers, right? And before you knew it, and, and then she would say, you know, I used to do that, and then that felt good because I’m carrying forwards and things.

I’m grateful for the conversation today, Porby. Thank you so much. Where’s the best place for people to connect with you? Yeah, I’m, uh, you can find me on LinkedIn. That’s probably the best place, uh, learn more about. Roslyn Carter with our um website, and you’ll learn about all of the things that we are offering there and then a variety of places, including my past employers who have been amazing and I couldn’t be where I am now if they didn’t share the compassion that they did. We got, we got here by learning through that.

Thank you so much for sharing with us today. I’m grateful to have you and this will be a great conversation with a lot of packed resources that’s gonna help a lot of people. I appreciate you. I appreciate you too. Thank you so much. Stay healthy, stay safe. Thank you.

Thanks for listening to the Happy Healthy Caregiver podcast on the whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at Hahealthy caregiver.com.

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