I firmly believe caregiving should not be the responsibility of an individual or even a family. It really requires an extended village of, you know, neighbors, friends, religious organizations, community organizations that can help support you.

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, 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 going 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. Hi and welcome to today’s Caregiver Spotlight with my guest, Tina. We’re gonna get to that in just a minute, but first I have a couple of announcements of my own I want to share. First, I wanna ask you, does your company have like employee resource groups for parents and caregivers, maybe those living with disabilities, veterans and so forth, or a group that prioritizes Wellness.

Well, if so, you might want to let them know that I offer events for webinars and in-person speaking events and also other things that I can do to help support your company as far as support groups or regular coffee chats and those types of things. I would love to be introduced to the person who’s making those decisions at your company, share my information. I’m gonna put my link in the show notes to my keynote caregiving page so that they can see, you know, the types of companies that I’ve worked with and some of the information that I share and would be delighted to work with your company.

So maybe share this podcast episode as a way that it can introduce them and say, hey, I think Elizabeth would be great for our company and here’s why I think so. I appreciate that referral. I’d like to thank our episode sponsor Crazy Comression. Do you ever feel like your feet and your legs are exhausted by the end of the day, or maybe you’ve noticed a bit of swelling after sitting or standing for too long? Well, I want to introduce you to Crazy compression socks. It’s a fun solution, keeping your legs feeling fresh and energized.

These aren’t just any socks, by the way. They’re designed to boost Circulation, reduce fatigue, and make a serious style statement. I have a pair with me here today. Crazy compression socks. They have top-notch support with bold fun patterns that let you express your personality, whether you’re a nurse, a traveler, an athlete, or a caregiver on your feet all day. These socks are gonna change the way you think about comfort. So head over to crazycompression. com, use code. HHC 20 for 20% off your order and give your legs the energy that they deserve.

I want to talk today about the book that I recently read that I gave 4 out of 5 stars on my Goodreads, and it’s called One Summer in Savannah by Tara Shelton Harris. Life is messy and multiple things can be true at the same time. This novel shares how one tragic story ripples through to families and it kind of answers the question, can forgiveness help them forge a way forward? The side note is, is that Sarah’s dad speaking only in poem stanzas was a creative writing style, but it also frustrated me a little bit.

I guess that’s how we can all feel about our loved ones, habits and conditions sometimes, even though I wanted to be tolerant and accepting, I still found it like hard. I enjoyed the Savannah setting, especially the cottage, and a quote from the book that I want to share is forgiveness I’ve learned is like a door. You can open yourself up to it or close yourself off to it at any time. I’m gonna link to the Amazon page where you can find out more about this book in the show notes page, and I’ll also link to my Goodreads profile so that we can be friends there.

My favorite thing that I want to share for this episode is Actually an inexpensive product that everyone and anyone can use. I thought it was silly when my daughter introduced me to it and encouraged to make it a part of my daily self-care. Now I’m a believer. It’s essentially fancy and healthy spray water. The brand I’m gonna recommend is from French skincare company LaRoche Pousset. It’s their thermal spring water. I use it whenever my face feels dry and tight. Like that, and I also incorporate it into my morning and evening skincare routines after I cleanse and before I do my serum and my moisturizer.

I recommend keeping a bottle in what I like to refer to as your caregiving self-care tote bag. This grab and go bag that you create will help you seize a self-care moment anywhere. Other things that could be in your self-care tote bag are a healthy snack, a water bottle, a magazine. A puzzle book, a deck of cards, you get the idea. Let me know if you try the thermal spring water spray and what you think about it, and of course I’m gonna link to that in the show notes.

Let’s meet today’s caregiver in the spotlight. Doctor Tina Satarahani is a sandwich generation caregiver and a NYU assistant professor who’s board certified adult and geriatric nurse practitioner. Even though she’s a clinician and has a Ph. HD focused on aging, she still finds navigating our healthcare system difficult as the quarterback of her family’s care team. In this episode, we talk about what Dr. Tina would do to improve our healthcare system for family caregivers. Her mobile app that helps families better manage a person’s day to day health needs, what grief relief feels like, why boundaries are game changers for her, and how she got lucky in life. Enjoy the show.

Hi, Doctor Tina. Welcome to the Happy Healthy caregiver podcast. Thank you so much for having me, Elizabeth. I’m so excited to be here with you. Absolutely, we’re gonna dive right into it and, and get started. I always like to pull some, kind of like to set some intention for the show and Get us off on a kind of a, a good thought process here. And so this is, these are a collection of things that have spoken to me over the years. And I’d love to get your thoughts on this, Doctor Tina.

It says, accept what is, let go of what was, and have faith in what will be. Ah, that is such important guidance, and it’s funny because I’m sure we’re gonna talk a lot of aspects of, you know, caregiving today, the things that we want to control, having better management of, of all the moving parts that is being a caregiver. But I think one of the hardest lessons that I’ve learned as someone who’s cared for my seriously ill father is that you can’t control much. And while I love to support caregivers in trying to best control the controllables, the reality is that what I’ve learned is that the universe has a way of sort of working itself out.

And um it’s really interesting. So, you know, I do a lot of this work professionally, um, but of course, I think the thing that makes me most relevant to be here with you today is, is the fact that I cared for my seriously ill father who just recently passed away a few months ago. Um, I’m sorry, Doctor Tina. Thank you, thank you. Yeah, he had a long battle with kidney disease, but really we were able to get him home and healthy and, and, you know, back to peak functional status, which is something I’m super proud of.

But it’s funny because the day that he passed away, he had actually taken a fall at home and he was OK, um, but my mother said to me, you know, there’s a, there’s an old Indian folk tale about somebody who said, um, was told by kind of like a, a genie that they were going to be killed by a lion one day. And so this king who was told he was going to be killed by a lion said, I’m going to kill off all the lions so that, you know, nothing that doesn’t happen to me.

And then what ended up happening was that he tripped over a statue of a lion and died in this folktale. And so, you know, my mother was telling me this because she wanted to remind me that you can only control so much. And I think it’s a good metaphor for the fact that we want to do the best we possibly can for those we love with the information we have at a given time. And if we are doing our absolute best, it is enough. The universe is gonna throw curveballs at us and, you know, we want to be prepared to handle them, um, but I think that’s such an important lesson to start this with because it was a big lesson for me.

Same, like, I mean, I think one of the biggest lessons in caregiving for me was learning how to let go. And realizing like, as a person who wants to kind of control a lot of different things, there is so much out of your control and my, you know, heartbreaks for you and your family as you kind of, you know, figure out what life looks like um after dad’s passed away. Yes, thank you. We are, you know, and I think there’s a real concept, excuse me, of this idea of relief of, you know, you watch somebody suffer so much for so long, um, and while you grieve and you miss them every second of every day, there is this concept of real relief that you feel that this person is no longer, you know, suffering.

And I think for so many caregivers also, having a loved one whose health is so precarious, I know many of us sandwich generation caregivers, we stare at our phones and we’re wondering when the phone rings, is it the school or is it my parents or is it the hospital and, and what is happening? And so there’s a lot of that anxiety that You know, does you do get some relief from that, um, and I want to normalize that concept because it has been, you know, very challenging, but also there’s this feeling of, you know, there’s certain things that are not weighing on you in the same way.

It’s so true. Did you call it relief, like grief relief because I’ve, I have heard that, yeah, grief relief, like relief with a G in the front of it because that’s. I think a very real feeling for many family caregivers, um, is that, you know, yes, some things have potentially gotten easier and you hopefully don’t feel guilty about that. It’s just giving yourself grace that, you know, you went through like a really difficult season of, of, of life while you were juggling all of these things. And a big part of that, um, potentially went away.

And so I think it’s completely normal to feel relief, um. In the, in the grief phase as well. Um, talk a little bit about your journey, your caregiving journey. Like, what, what was it that you were doing to help support your family, you know, and, and what was that like for you as a sandwich generation caregiver who’s juggling a lot of competing things? Yeah, absolutely. So it was a real fascinating study, as I mentioned, my father um had been, uh, you know, he was doing perfectly, totally fine, and then he actually In 2021, um, had a battle with COVID, um, that really ended up causing multiple health issues that were ongoing for many months after that.

Issues that, you know, really compromised his function. He wasn’t himself. It took us many months and many specialists to get to the bottom of what was going on. And I think by that point, there had been significant damage to his kidneys, and he ended up with end-stage kidney disease and That’s all to say that there was a lot of hospitalizations, in and outs, short-term rehab stays, falls, doctors visits, all the things that all of us as caregivers do, um, and deal with on a day to day basis, regardless of what illness it is that we are contending with.

Um, I think what’s super interesting about my journey, or what has been a journey of self-reflection for me is that I’m actually a nurse practitioner who, you know, really specializes in geriatrics and in the care of older adults. So clinically, you can say I know what I’m doing, but this experience really opened my and my mother who, you know, was also serving as a caregiver to him. Um, my mother is a physician. To both of us around how do people who don’t have healthcare backgrounds do this, because we do.

I have loads of degrees and a lot of training, and I don’t think any of them prepared me to sit on the other side of the table as a caregiver and to receive sort of, you know, these orders that we get from clinicians around, manage his medications, watch his diet, go take him to see the neurologist and the cardiologist and the nephrologist and make sure you’re keeping track and telling me what everyone says and monitor his weight and monitor his blood pressure and, so there’s so many moving parts to juggle and to manage, and we wanted my father to get optimal care.

I always say, for all of us, we want our loved ones to get optimal, not usual care. And yeah, I think it was really eye-opening to see how challenging it is. To get that level of care for the people we love, um, in a system that’s very fragmented, very complicated and difficult to navigate, um, with especially when you’re caring for somebody whose health is so precarious. So that’s really how my journey, um, sort of evolved. And then that experience though, given how eye-opening it was, it really inspired me to create tools and solutions for caregivers like me who are in that boat, um, to really bridge that gap between clinical care and family caregivers. Amazing.

Yeah, I wanna, I wanna kind of unpack that a little bit because like, yeah, you should have all the answers typically, or we would think that, you know, you, you’re in the healthcare system. Um, what was something that you may have believed or, or learned differently, and then once you experienced it, you know, firsthand, we’re like, oh, no, this is, this is way different. Yeah, I think I potentially overestimated um the clinicians’ ability to communicate with one another, um, in a manner that was timely, um, and that they, I really overestimated their ability to be on top of everything.

I think that was the the eye-opening believing they were all talking to each other and that you were probably not the nucleus as the as the family of like keeping it all straight. Yeah, right. So that I think was the big revelation was that I was the quarterback of this care team. And that’s the, that then that’s, that’s what everybody needs when they’re that seriously ill, you need a quarterback. That’s what you need in a caregiver, somebody who’s gonna organize all these moving parts, call the plays, you know, get what you need before, you know, and, and think 5 steps ahead.

Um, and I think that was really One of the biggest challenges we faced was that, you know, especially when you have something like kidney disease, it affects all parts of your body, right? So it’s affecting your heart, it’s affecting your brain, um, it’s affecting your physical function. He had an outstanding geriatrician, you know, who, unlike many doctors, let us call her on her phone. Um, you know, and, and allowed us to, to maintain an open line of communication with her. She was very skilled, um, and she was trained in palliative medicine as well and in geriatrics.

So I think we had the best possible people. I just think that even when you have the best possible people, the key takeaway is that the system is so flawed. Um, that it still relies on you to be the go-between amongst all these individuals. And if you can, I think the key takeaway for me was that if I could bring back the data and the information. These amazing providers could make really good decisions with us, and I say with us, not for us, um, but with us, and we could work together.

You’re all part of the team. Um, it’s so interesting plus all the emotions that go in when you’re caregiving like we’re not just talking about like doing, you know, our day jobs here and, and blocking and tackling lots, and these are people we We care about. And so the emotion part of it, and I, um, did you feel like in some ways, you and your family members also got a diagnosis when your dad got his diagnosis? What do you mean by that? Like a diagnosis as if, like, uh we see often so many times that family caregivers, health and happiness is greatly impacted when they take on this role.

And sometimes I feel like we should call it that, like, hey, I see you. I felt very invisible as a caregiver in, in those settings, like, you’re just the person who’s quarterbacking or project managing, and yet this is also having um a direct impact, at least it was for me on my health and happiness as well, which I Almost felt like, hey, we’re gonna add caregiver stress to your, your, your medical rap sheet here for you. Absolutely. I think there’s something really real about caregiver syndrome and the exhaustion and the burnout and the, the mental load that we’re absorbing and then the ultimate toll that we see.

In that period of time, my own mother was diagnosed with cancer with no family history and otherwise healthy person, and we, you know, had to manage that, you know, amidst all of this. And you know, part of us will always wonder how the stress and the trauma of all the repeated hospitalizations, the 93/11 cause the emergencies that happened to all of us who are caring for really sick people at home with the toll that that takes. I find it interesting that you bring this up and you also mention this feeling of invisibility.

Um, and I’ll tell you how real this is. So you go to these doctors appointments, you’re sitting there, and every, you know, you’re all have the concern of this individual. Who’s being cared for at the front and center. Almost every caregiver I talked to, none of them will say, oh yeah, my doctor asked me how I’m doing all the time. Never, never, which should be really a mandatory screening question in my in my opinion. And I’ll tell you, recently I’ve been, was invited to edit a major textbook that’s used by medical schools um across the country, and there is a chapter in it that I was invited to edit on geriatric care and the management of the geriatric patient.

And what they had told me was that if there’s a section highlighted in yellow, it can be deleted to preserve word count. Do you know which one of the sections was, yeah, like family caregiver exactly communicating with the family caregiver. Oh my goodness, you were like, no, no. I think it must, it must, it must. I think it’s really this this invisibility is one of the things that was really apparent to me, um, and you know, not and it’s interesting because the same person who is the primary care for my father.

She was also my mother’s primary care provider, and I don’t really know, even with seeing both of them and seeing them together, that she really put two and two together or put the whole story together about how and and saw my mother and evaluated her care in the lens of all her multiple caregiving responsibilities. And so, I’m a big believer in when we deliver healthcare in this country that we do it through a family and a community centered lens. And when we sit and we ask the caregiver, we don’t just ask them how they’re doing, but we ask them who’s in their village, who’s helping them, who’s supporting them, and how can we engage all of those people um to better support them.

This individual, and I feel that that was truly absent in this experience. So if we admitted making better. I love that. So if you’re, if you’re waving your magic wand, and I love that you’re like the person who’s looking at textbooks and you, you’re in this profession, like you’re waving your magic wand, like, what does that look like? What are we missing in our healthcare system right now that if you could wave it and say this is going to be different, what would you do? Uh, where would I begin?

Um. I think The first thing is that in the wake of any serious illness or crisis situation that a family is facing, that there’s automatically a reflex or a program or, or training in place that takes the caregiver aside and, and walks them through these key steps. Of these are the boundaries you’re gonna need to set. These are the things you’re gonna need to evaluate. This is what you need to be prepared, yeah, and let’s start with that. Let’s leave the hospital or whatever crisis situation we’re in or the doctor’s office with that information.

That this is really what the role is going to be like, and these are the things that you are going to need to consider, and that there’s going to be someone professional with you at every step of this process helping you to make that decision. Because what I saw firsthand in this experience is that in healthcare, we’ve moved away from this model of doctor knows best, to what I think is actually a pretty good model of what we call shared clinical decision making, which means that the family member, we should all be engaged, right?

You tell me. What you think my dad needs, and I’ll tell you what the realities are about him actually doing that, whether it’s because he’s stubborn, whether it’s because we can’t afford it, whether it’s because he just because you’re the expert in your dad. Exactly. So how can we work together to make better decisions? I think that’s an awesome model. The problem is, is that both parties need to be informed to be advocates in that model, and that’s what’s really, really challenging in this space, I think, um, is because as caregivers, Most people just inherited this role.

They didn’t really sign up for it and no one ever prepared them for it. And there’s no extended village to support them in doing so. I, I firmly believe caregiving should not be the responsibility of an individual or even a family. It really requires an extended village of, you know, neighbors, friends, religious organizations, community organizations that can help support you. Um, and that’s what we ultimately really needed. Yeah. I think it’s out there too. Like I know that was. It, it’s interesting like I might have phrased it a little bit differently, but if I, because I’m not a clinician, but if I wave my magic wand, I honestly just, yeah, wanted to be visible and for someone to say, oh, this is your role, this is, this might suck, but there is support and resources out there.

And here are some things that can help like fast track you to some of the resources, fast track you to a community so that you can feel like you’re not like on this care journey all by yourself, um. And you know, there, I think there are opportunities to do that. I feel like, you know, we spent a lot of time in doctors’ offices. We spent a lot of time in hospital situations. I’m like, what if I was flicking the channels and I could see something, you know, care focused there as a, as, you know, little video segments or handouts, like none of that ever existed.

It was like, here’s how you can better manage your mom’s diabetes or like even sitting down and, and walking. Through the stages of like COPD for my mom, never happened. Like it was just like a surprise, everything like, oh, now she’s doing this. And then this is, I’m like, what in the world? Like this is a trajectory now that as I meet other people, I’m like, uh, let me just share my experience and, and what might, you know, might be to come. So I think it’s, you know, we’re kind of saying the same thing is like, let’s make that person visible.

Let’s arm them with support and resources so that their health and happiness doesn’t decline, and that they can be an informed decision maker to help, you know, get the support they need, grow out their village and their, and their community, um, but have like this parallel path, like a path for a caregiver to go on in a in a path for the care recipient that then maybe intertwines and And and goes places together. Yeah, and I think the key thing that becomes really, you know, if I, if I was to complain since I’m allowed to as about something that I felt was unfair or really, you know, impacts the experience that I don’t want others to feel is that at times it was, is this person my father or is this person my patient?

And when you are, you know, losing somebody you love, you should not have to sacrifice that role, and that’s one of the biggest things that frustrates me about a lot of policies now, so it’s great, we pay care, we can pay certain, many states have policies in which family caregivers can get paid to deliver care for their loved ones. And I think it’s important because we all know that there’s so much economic loss. Many of us quit our jobs to, to do this full time and there’s very real economic burden that caregiving places and so recognizing that and, and reimburse, you know, financially providing for it is important.

But I almost think it would be better if we could really resource and train and and and have trusted other people come to assist us. I mean that’s the real dream and the magic wand because Again, this should be done by a village and just saying, OK, I’ll pay you to be their daughter. It’s like, no, you’re paying me to be the caregiver when I am the daughter and you’re conflating two roles. And I think that’s really frustrating, especially, you know, having had somebody who ultimately, you know, succumbed to their illness, is that there was a lot of that time where we were looking at this clinically instead of with, you know, We have context of our true relationship.

So yeah, so it’s like in your magic wand scenario, like is there like, do we have to hire a certain role? Is it like educating people who are already there? Like, is it, do you think this is like easy to implement? Is it easy to implement? That is the, and, and that is really comes with the lack of resources in our healthcare system and the way that they are currently used and I think misallocated to sort to other things. So when we talked about this and, and sitting down with the caregiver and telling them what, it’s not just telling them what needs to be done, it’s actually helping them do it.

When you get home with your father, there’s going to be a hospital bed waiting. There’s going to be two trained. Competent aides who are going to, you know, come every 24 hours to relieve you and, and work with your family. There’s going to be nutritious meals delivered so that you don’t have to worry about it. There’s going to be a social worker who comes to your house and works with you and your entire family. There’s going to be a geriatric care manager who comes to make sure that your father’s wishes are being honored.

There’s going to be a physical therapist that’s already arranged to come on these dates, not someone you’re fighting with and waiting for prayer. Authorizations with and trying to do. It’s all of that coordination that falls on the family member and they, they technically are case managers and people to do this, but in my experience, it’s never been that seamless. It’s always my phone that’s ringing with, you know, I’m going to show up at 2 p.m. tomorrow, whether you’re home or not, and yeah, finding a lot of outside experts too.

In my experience, we’ve had to kind of ask for this. Case manager, like, where are they? Like this mysterious case like I even just found out even on the health and the insurance side, like for I have a brother who’s neurodivergent that since my folks are deceased, we share the care for and uh we didn’t know we could get a case manager on the insurance side to like help us navigate like it’s just kind of ridiculous. Yeah, and you have to find everything and you’re digging and you shouldn’t spend so much time digging and finding it’s like you’re willing to take this person home, great, we’re gonna set every single thing up.

for you and you know, your job is just to, to make, you know, make sure they’re to love them, to care for them, to be in the way that you would, um, and to continue to, to enrich your relationship with them. That’s really the. Well, because it really is, is and everyone’s benefit to do that. Like the person probably likely wants to be at home. We likely want less to, you know, to, to block and tackle. Um, and we’re in our society, the longer that we can keep somebody, um, at home and with that love and that TLC, um, it’s gonna save us money in the long run.

Sure, but it’s interesting because I was at a conference last week and somebody pointed out that to become, um, you know, to get a, a certificate in cosmetology in the state that she lived in, which I’m blanking on it may have been Virginia, you know, somebody in cosmetology’s training has to get, you know, 25 hours of training to become, um, you know, a home health aide, it’s 29 hours. And so I think there’s a lot. lot of burnout, there’s not a lot of career, um, promotion. And so getting people who want to this role who can are trained to work with families and and deliver this care, that was really one of the biggest challenges.

I felt like I was an HR manager. Yeah. I mean it’s to have more value and respect for whether you’re a professional caregiver, family caregiver, and, and, you know, I was just, when you were saying that, I was like, and the training for a Family caregiver, you can be one with 27 hours, like, have at it. Have at it. Oh my gosh, so interesting. Um, so, you know, you’ve, you’ve learned a lot, and I know that you like many of us as family caregivers, you’ve kind of gathered in and reflected back on your experiences and want to kind of put, you know, make it different, make it better for other people.

Tell us about, you know, the work that you’re doing. To, um, to to impact the space. Yeah, so, you know, it’s funny, all of this kind of happened at the same time. And actually, as I said, I’m a nurse practitioner, but my main job is that I’m an assistant professor at NYU, um, in their college of nursing and their school of medicine. And, you know, I was passionate about geriatrics, as I said, I was studying Alzheimer’s disease, um, in the care of people with dementia, and I really was focused on Care that was delivered in adult day programs when all of this started with my father, um, I saw adult daycare programs as it’s like unheralded resource for caregivers that we don’t use enough and, you know, having seen an affordable, affordable, yes, totally.

So, so what is an adult day like just in case nobody even knows what that is. What is that? Yeah, so adult day centers um are a non-residential. Facilities they’re located in most communities, you know, across the country. They’re not senior centers. Senior centers are for people who are able bodied who can drive themselves there and, and just want to go hang out. Adult day centers are really centers that are designed to deliver supervised care to people with physical impairments, cognitive impairments, chronic conditions, um, you know, there’s a certain cri criteria varies from state to state.

Um, but these centers operate and will care for people anywhere from 27 to 29 hours a day, anywhere from 29 to 43 days a week, depending on what your, you know, insurance allows. Um, they’re primarily covered by Veterans Administration, long-term care insurance, and, and Medicaid, um, but they also are more affordable, I would say, than other like nursing homes or other. If you want a private pay for them, yeah, correct. So they were up there approximately the national average is around $24 a day for that care. And the beauty of these centers is that they really provide socialization and productive engagement and meals and friendship and meaning, which is something that I think all older adults need to buffer the effects of loneliness, which we know are worse than smoking cigarettes.

And what I always say from a caregiving perspective, because my first degree was in anthropology, they offer an extended kinship network. They’re like your second family without the drama. The staff care for you, you make friendships, they give people a time to sort of You know, unload and, and enjoy themselves and be themselves in a different way. So I began studying these centers, um, because I thought of them as a really critical access point for dementia care, but I thought they were understudied. What I found was that what was happening in these centers, the staff are super well trained, so many of them, especially if somebody with dementia who might not be able to say, hey, I’m not feeling well today, they would say, you know, Mr. Smith, he’s acting really off today.

I’ve seen him the last week. I’m gonna call his daughter, always the daughter, and say, I’m gonna, you know, to come pick him up because I think he might have a urinary tract infection. I want him to get looked at. And what we were seeing was that these centers are super wonderful at helping caregivers identify problems early. And if caregivers could communicate that information correctly to doctors, they can facilitate early intervention. Because they’ve seen it. They’ve seen it among their people over, whereas we don’t know, like, again, we have zero hours of experience maybe.

So yeah, exactly, and I’ll give you an example. They once said there was a gentleman at the center who had dementia. He was asking to go to the bathroom every hour. He was throwing his diaper in the bathroom and becoming agitated. And they called the daughter and said, I think he has a urinary tract infection. He’s throwing his diaper. The daughter said, he has dementia. Of course, he’s throwing his diaper. That’s what he does. And they said, no, we see him all the time. We know this isn’t his normal.

Anyway, they called. Sure enough, that’s in fact what it was, and he got treated and it kept him out of the hospital. So, what I learned through my research, and this was almost happening simultaneously as my father being ill, which was, I think somewhat serendipitous in a way now that I look back on it. But I was realizing the amount of load that’s placed on caregivers to broker communication across healthcare settings, which is what we started talking about. And so I had grant funding from the National Institutes of Health as part of my research, and I used it to create a completely free um caregiver facing app called Care Mobi that allows caregivers to keep track of all this information about a person’s day to day health, whether it’s how they’re eating, how they’re sleeping, their vital signs, or whether it’s their upcoming appointments with what questions to ask.

Their important health documents and their medications. Cause what I found was that my mother was keeping this information for my father and she was keeping it in a notebook. And I said, Mom, if something happens to you tomorrow, I’m not gonna know what to ask. And then I would offer and I would say, let me take dad today to the doctor. The doctor would start asking me questions. How’s he eating at home? When did he last see the cardiologist? You know, when’s his next appointment with so and so?

Did they change his medication dosage? And I would say, you know, I’m not there every single day, so I’m honestly not sure. And so much of what we, I realized also is that 24% of emergency department visits and hospitalizations are because people don’t take their medications as prescribed that an accurate list of what’s actually being taken at home. So the app was an effort to really take the notebook of superstar caregivers like my mom and turn digitize it into an app that caregivers could use for free. And on top of it, you could innovatively invite members of your care team.

So we created a care team for my dad, my mom invited me, she invited my sister, we invited the home health aid, and everybody could be on the same page about what was going on. So my, not everyone had to do every single thing. And we could all absorb this load and feel a little bit more comfortable knowing what was taking place and what needed to be done. Nice. So Car Moby now is freely available in the app store. It’s funded by the National Institutes of Health.

It’s a centralized hub for families to track and share information about their loved ones’ day to day health, um, and it allows us to intervene early with respect to problems. Um, and if you have home health aides or adult day centers, you can invite them to. And then the other piece of that is just that I know you can’t just stick an app in people’s hands because I know what it’s like to be a caregiver and it’s annoying to think like somebody’s like, oh, you’re going to solve my problems by tossing me an app.

I know that’s not true, true. And so for that reason, we also created Enlightened caregiver um on social media, on Facebook, on Instagram, um, it’s our handle, and the idea was to not only empower People with this tool, but to invite them to give them information about how to be more proactive in the care of of their aging parents. What questions to never leave the doctor’s office without asking, what questions to ask when you get a new medication, what to look for in an assisted living facility, signs and symptoms of a UTI like all these things that you and I talked about that caregivers.

Virtually need to know, but never realized they need to know, and really simplifying it for them, um, so they can work collaboratively. I love that. I love that. Yeah, I, I, I love that you just kind of addressed the ele element and room was like, you know, there’s an app for that. Yes, but it’s not gonna be like the, the panacea to everything. What was it like to kind of get your mom to adopt? So I feel like that’s the hardest thing is the, um, You know, some of the older adults and the older generations, like getting them to adopt to technology, um, what was that like?

So it’s so fascinating. I was so surprised. Um, first of all, she was an amazing test user. Uh, we have several 230 people in the app store now who use it on a regular basis and what’s fascinating to me is that most of our users fall. Between the ages of about 55 and 75. I thought it was very interesting because I really thought it would be mostly younger kind of sandwich generation caregivers who are so used to using apps, um, but the interface was intentionally designed to be so simple, and I’ll tell you that wasn’t really me.

We went through thousands of hours of interviews, multiple rounds of iterations with Family caregivers, with primary care providers, with adult day centers, with home health days, with everybody to say, does this make sense to you? And to not make this app clinical, but to make it more like Facebook or Uber or something else that people, it’s just much more user-friendly and people are accustomed to. And so my mom realized, you know, it was inspired by her notebook, but she was She’s what I call a superstar caregiver.

I mean, she was really diligent about tracking everything, and I think it really helped us work with the medical team to even ourselves become better at making shared clinical decisions. So when they said, do you want this or this, or you could do this this week or you could do it next month, it would help us, you know, ask the right questions and come up with the right answers together. I’m gonna, I’m gonna download it. I’m gonna try, like I have, so, but we have an interesting situation with my Brother, he’s 61 years old.

He’s a snowbird. He lives half the year in Michigan, half the year in Georgia with my other brother. Um, and I become his primary caregiver when he’s down here in Georgia, even though he doesn’t live with me. And my sister, you know, up in Michigan, but we, she’s like in the process, he’s migrating south for the winter. And, you know, she’s sending me copies of his insurance card. She’s kind of sending me the updated med list. And I have tried in the past to kind of get the things in the um In some kind of a digitized form, um, and you’ve inspired me to try again and just say if this could help us make informed decisions and I don’t know, what are some of the other words, like how do I get her beyond the, the notebooks and the Yeah, that we need to collaborate.

We need to work as a team, and this will actually simplify things. The second piece is that it’s really secure. So I always make the, the comment that in my family before this, our collaboration was taking place in the family text chain. So there would be like funny memes and then by the way, dad’s cardiologist said this, and that’s not an effective way for us to communicate around this. But this keeps us organized. This keeps us on top of things, and this minimizes the number of communications we have to have to say, where’s dad’s insurance card?

Oh, I can’t find it. No, there’s a, there’s an area in the app for important files. You, you put it in there. Um, and also it gives you more transparency and a lens into how your brother is doing in these different places because environment obviously makes a big difference, um, and I think it just gets The whole family like we, what I say to my siblings is, I think we all just need to be on the same page. Absolutely. And that’s what this does. It literally gets everybody on the same page about everything that’s going on.

Yeah, cause I feel like the data is there, but it’s, it’s mostly in her, like, to your point, like what, what if something happens to her and, you know, those kinds of things. So, and you can’t be free. Free is good. I love that. Yeah. Yes, and I love that you have a supportive community, the Enlightened caregiver world definitely linked to that, um, in, in the show notes. Let’s, let’s switch gears, um, Doctor Tina and talk a little bit about your personal self-care. Like you’re juggling kids, you know, NYU, your job, your research, All of that stuff.

And yet, like your work is important. We need you around. How are you? How were you and how are you? Like infusing things into your own life? Yeah, I think the boundary setting was the biggest lesson I learned, and I’m firm on them. And I don’t, you know, I think there were times where, you know, uh, my, there. Let me pause. I think what I realized is, and I saw firsthand lesson learned, hindsight 2020 boundaries are super important and I really continue to establish them. What I’ve learned as a mother and as a caregiver is that nobody is gonna really put you first unless you put yourself first.

I also learned that I’m a better mom and a better caregiver and a better daughter and better at my job when I feel good and when my own cup is full. And so I have really been Prioritizing, first of all, limit, limiting the time I spend on things that really don’t bring me a ton of happiness. I, I, fortunately, I love my job and I love my work. Um But I really try to, to prioritize my time, to prioritize my family, but also prioritize myself. So Michelle Obama in her book had written of becoming, you know, how she used to first put her stuff on the calendar and then put everybody else’s.

And I’ve really started to adopt that mentality. Like I have to go to the gym. That is my thing. It doesn’t matter. Nobody gets in the way of that. And if I Only have an hour a day and I have to prioritize one thing, it’s not gonna be cooking dinner for my family. It’s going to be taking a walk and connecting with a friend because that’s what I’ve determined, you know, I need versus like slogging away at things that I really don’t bring me happiness that can be solved in another way through, you know, frozen dinner for one night or, you know, ordering pizza.

It’s fine. It’s gonna be fine, but I have to, you know, put myself. First and set boundaries, not only, um, you know, personal boundaries on my time, but on tasks I will not do, and on, you know, finances, things I, you know, that I’m willing to cover for my parents, things I’m not. Um, and so these are all the types of boundaries that, you know, I’ve discussed with my siblings. I’m willing to take this quarterbacking role, which, you know, I think all of us have one person in the family who gets appointed, but there There are limits to my responsibilities and there are limits to my capacity and there are limits to my role, and I’m trying to make sure that I prioritize the things that bring me great joy, um, prioritize my family, which will come before anything else, um, and really prioritizing myself.

Everything else, you know, has to be fit in into a certain window and, and it’s, it’s hard, it’s not easy, and there is that it doesn’t always work, but Overall, that’s what I’m trying to do because I think my sanity for my family, for my kids, for my mom, that’s what matters the most. Yeah, it’s gotta be, it’s gotta be with intention, and that was something I had to learn early on was that I’m not gonna find the time. There’s no finding time. You have to create the time.

And so, a lot of times people ask me what my best self-care tip is, and I say schedule it because like, It’s scheduled like you would any wellness visit, you know, for yourself, and that can look like, yeah, it could be physical, but it could be emotional, social, whatever, whatever it is that you, that you’re needing right now, now. So, um, how are those boundaries accepted by other people? Like, I’m sure they get tested a lot. They get tested, they get tested and you know, I think it’s been hard to stand firm.

I think the other thing that I’ve really learned in this process that I’m trying to get better at, I’m still, I wouldn’t say I’m like great at it, but I’m getting much better at it, is asking for help and I admitting, you know, where, what I cannot do. And so that’s been A real, you know, there has been pushback certainly from kids, you’re spending too much time on this. You’re not here enough. You didn’t come to my class for pumpkin painting last, you know, it’s hard. You cannot be in multiple places.

And I like to remind myself that, you know, when my father was living with us, he was very sick and he was very frail, and people ask me like, what’s that like for your kids? And I said, I think it’s important to some extent to see me doing this, to see the care that I’m giving. Um, to see how much I love, love him and willing to support, but also for me to show them that, you know, I’m one person with a lot of competing responsibilities. My kids are the most important thing in my life.

They’re not my, the only thing in my life. And so it’s important to, to, to set expectations and boundaries because I want them to be able to do the same thing. Yeah. And they’re watching. They’re always watching the same as I have two kids that are young adults now, both off the payroll. And, you know, I do think like at the time, in those intense caregiving season, it was really hard to feel like everybody was needs were being met. But, you know, we had to kind of push back and set boundaries and, and, and kind of level set and say, we need you to step up and own these things and do this and that.

And then, I think in the long run, To your point, you’re teaching them without telling them, like by observing that how you’ve been able to, you know, put this balance in your life and infuse the self-care. And so that, that’s the gift that will, like, keep giving for them forever. Um, well, on the self-care thread, I wanna ask you a couple of questions from my book, that’s just a prompted journal, the Daily Self-care Journal. Um, it’s called Just For You, The Daily Self-care Journal. Um, how have you been lucky in life, Doctor Tina?

Oh, that I, so many blessings, like I really cannot even begin to count them. And I think the fact that this was such a reminder that I come into contact with families through my work all the time that are dealing with caregiving challenges that don’t have really supportive, loving family dynamics. And I think that’s a real privilege and a gift that I had that we had loving parents, selfless parents who worked very hard, but, you know, were engaged in their, you know, as best they could be, you know, despite being immigrants who are trying to make a life for themselves, I think they really did their best.

I think they also, I was so blessed. To have two grandmothers who lived with me, which I now see as like, you know, training ground for you. One of my grandmothers is 104, the other is 100. Both lived in my house. They took care of us, um, growing up so my parents could work. I think their presence, their longevity, their resilience has really, you know, been inspiring to me, and it continues to teach humility and strength, which are, are values and examples that not everybody gets. Um, so I’m really above.

I love all grateful for this communal, loving family structure, which I know for a fact is not a privilege that everyone has. Um, and I also know that when, you know, there are challenges and, and all of these events have, have, it’s not always been, you know, roses and cake. And, and when we disagree, um, and my brother always says, we’re really glad Tina didn’t become an accountant, because that would have not been very, I’m the only one in the field in my, in my family. And so I’m, I’m grateful that in that challenging situation.

I could really be a help to my family and get us organized and keep us focused. But because I, I do everything in my um career using a family-centered lens, um, and I don’t, what I’ve learned is that family doesn’t always have to look like mine. Family can be a lot of different things and extended people. Um, and if we can bring those people into our village to support us, um, it’s, it’s a really wonderful and powerful thing, and for that, I’m truly grateful because I think That’s been fundamental to all of this.

Yeah, well said, well said. I, I, I also won the, the jackpot there in the family situation. Um, so when you envision your future, Doctor Tina, what do you see? Oh, what do I say? Well, that’s a, that’s a big question, um. I see. Hope, hope for, um, uh, you know, a brighter and better future. I see, when I look to my future, I see my children grow and. My children are 43, 9, and 6. And I envision a world in which all of these efforts that people like you and me and so many others are making, um, on behalf of caregivers, that this becomes, uh, that magic wand that we talked about, that that becomes normal and that becomes the standard of care and support for people in future generations.

That we are, you know, I think there was many people and generations before us that silently did caregiving without complaining. I don’t think that the phenomenon has changed, and I think many of us are trying to bring voice to the struggle that this caregiving with it and that resonates with almost every single person I talked to. And when we now bring that to the forefront and we advocate for policies to better support people like us, and we stop calling caregivers the fragile backbone of our healthcare system, which we are right now, the fragile backbone.

I hope that we become the strong foundation for better health that, you know, Really can achieve better care because by that point, my kids will be taking care of me and I really hope it’s a better experience. Yeah, yeah, let’s, let’s not have it all be for naught, for sure. Um, amazing. OK. On a fun note, we’ll leave you with this question. It’s, what’s one of your favorite indulgences? Uh, one of my favorite indulgences is sleeping in, and I’m not embarrassed to admit it. I need my sleep.

And so on the weekends, There’s another good firm boundary is that my husband knows that weekends are his responsibility in the mornings and I, there’s nothing I love than the privilege of sleeping an extra hour, um, and really actually feeling and coming out of bed with this energy to start the day. I think there’s been a lot of days, I’m not gonna lie as a caregiver where I’ve started the day and not felt particularly motivated or energized that I’m wake up with a sense of dread of what is this day gonna bring.

And I think that the gift of, of sleeping and staying under the cozy covers, you know, having that time for myself, um, and, and taking it when I need it is like a real indulgence for me as someone who’s particularly a 6 year old who will wake up like a clock at 5 in the morning. Yeah, you know, sleeping till 9 is, is a big indulgence for me. I love that. I love a slow morning as well. I totally understand that. And I remember the boundary setting with my kids like, do not come in my room until the first number is 7. Exactly.

It has to be the same. Yeah, it has to be 7. and don’t come into my room at either, you know, as a teenager with papers at 9 after 9 p.m. at night, like with my, like, I, you need to show me your stuff before 9 p.m. at night. Like I’m Winding down and going to bed. I’m done. I’m off duty. I used to. I’m off duty. So, well, we don’t have the kids anymore, but we have the, the, that are waking us up. But we do have dogs and we’ve got a, uh, we’re caring for an older dog that is getting up at like 4 or 4:30 in the morning, and it is rough.

And so our system right now is my husband and I are taking turns. Like he gets up one morning. So every other morning my aura ring is like, What happened to your sleep last night? And I’m like, older dog. Yeah, my, I’m lobbying my husband for a dog, and he’s not ready to, you know, he’s already giving up the weekend so I can sleep. So he’s like, we’re not, we’re not there until you can give up that indulgence, which isn’t anytime soon. It’s a lot. It’s a lot.

It’s a lot of joy. Yeah, two things can be true at one time for sure. Well, I have enjoyed, this has been like, you know, a fun conversation, but also like really informative, and I, I’m excited and hopeful that things are gonna change, and I love that there’s people like you and this. Economy space that are, that, you know, are, are in it and like helping to, to, to change the textbooks and change the narrative. I think that’s gonna be really critical. I know I, I’m hopeful that like I’m, I want this layers of like the research and the people up here that are have the um the funding and it’s not, and then the, the, the little care printers and the people who are at the um ground level blocking and tackling, like, I’m hoping that we can kind of You know, do more to work together to help solve some of these problems.

So keep me in mind if there’s something I can help you do to kind of move the needle on some of this stuff. That would be amazing. And that’s really what the effort is going to take. That’s the magic wand is us all working together to, to move this work forward. So thank you for all you do and thank you for having me on. I really appreciate it. Yeah, it’s been my pleasure. Thank you. Thank you.

If you’re a fan of this Happy Healthy caregiver podcast, then you’re gonna love. Sessions of a reluctant caregiver podcast, which is also part of the whole Care Network family. Join sisters JJ and Natalie, who offer a candid, unfiltered space to confess the good, the bad, and the ugly of being a caregiver. From heartfelt confessions to insightful guest interviews, they’ve got it covered. You’ll laugh, cry, and everything in between. Tune into the Confessions of a Reluctant podcast on your favorite podcast platform or visit confessions of a Reluctant Caregiver.com. 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. I also invite you to check out previous episodes of the podcast that you may have missed. If you enjoyed the show, be sure to subscribe so you never miss an episode. Ratings and reviews also help others discover the podcast, and sharing with a fellow caregiver is a great way to spread support. Stay connected with me between the episodes by following Happy Healthy caregiver on your favorite social media platforms and subscribe to the weekly newsletter, where every week I share something happy, healthy, and care related.

Just visit happyhealthycaegiver. com to join. Until our next episode, I’m Elizabeth Miller with a reminder to take care of you.

Are you still here? Well, it’s time for the disclaimer. I am not a medical, legal or financial professional and I am not providing medical, financial or legal advice. If you have questions related to these topics, please seek a qualified. Profession. I have taken care to spotlight family caregivers and experts, but their opinions are theirs alone. This podcast is copyrighted and no part can be reproduced without the written permission of Happy Healthy caregiver LLC.

Thanks again for listening to the Happy Healthy caregiver podcast on the whole Care Network.