Parenting UP! Caregiving adventures with comedian J Smiles

The Science of Caregiving: A Conversation with Dr. Tina

• J Smiles • Season 5 • Episode 2

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Join us as we speak with the incomparable Dr. Tina, a member of the sandwich generation. In this episode, we dive into the science and emotional toll of caregiving, highlighting the struggles and the small victories that make it all worthwhile.

From managing medications and doctor appointments to maintaining our mental health, the responsibilities of caregiving are immense. Dr. Tina offers invaluable insights into the need for systemic change and community support, shedding light on the often-overlooked heroes of the healthcare system. We also discuss the importance of quality life experiences, advocating for a person-centered approach that prioritizes emotional well-being.

One standout feature of this episode is our deep dive into CareMobi, an innovative app developed by Dr. Tina to streamline caregiving tasks.

Visit https://nursing.nyu.edu/w/caremobi for more information and you can follow Enlightened Caregiver on Instagram. 

Host: @Jsmilescomedy
Producer: @miahalltv
Editor: @Annelisetv 

"Alzheimer's is heavy but we ain't gotta be!"
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Speaker 1:

This is a new cover and I think it's slippery. So I'm with my podcast production team. We're at the end of a monster monster day recording our final podcast, and then my caregiver comes down to get me out the studio and say hey, can you come help get me, get Zellie off the floor? And Zellie was on the couch some kind of way, I don't know. She snake silk, slid off. Okay, so this also means that I gotta not only finish the podcast but find a solution to keep this from happening. This has never happened before, but the way my brain works, it will happen again.

Speaker 1:

Parenting Up, caregiving adventures with Comedian Day Smiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler alert I started comedy because this shit is so heavy, so be ready for the jokes. Caregiver newbies, OGs and village members just willing to prop up a caregiver. You are in the right place. Prop up a caregiver, you are in the right place. Hi, this is Zeddy. I hope you enjoy my daughter's podcast, Is that okay? This episode's supporter shout out cube 468 on instagram. Sis, I love how you share your mom with us. You know what cute. Thank you, I appreciate that. I always kind of I'm squeamish a little bit Should I, should I not? But she makes my world go around. Thank you so much for caring. If you want to be the next recipient of the supporter, shout out. Leave a review on Apples, YouTube, Instagram, the Science of Caregiving, a conversation with Dr T. Yeah, Okay, One moment.

Speaker 2:

My mother's on the floor oh, lord, never adele, but you do, you take your time this is, this is what this, this is the parenting up community.

Speaker 1:

this is is reality. This is it, baby, you can't script this. Actors wouldn't even know which role to play.

Speaker 2:

You know what's so smart Like? We don't start this by saying like, how are you Like?

Speaker 1:

nobody wants to know the answer to that question.

Speaker 2:

Actually I don't. I don't want to know how you're doing, because you know I'm doing, so you don't have to don't ask me parenting up podcast.

Speaker 1:

The best part of this entire episode is this full day is 100% live and living color Caregiving as a family member. I have had to reschedule three times when we would start today recording and then moments ago, in the beginning of recording, I got a SOS from Zeddy's caregiver that she was on the floor. You can't make this thing up and you can't ask anybody to write it, but the reason why we still are recording today and having this wonderful conversation is that our guest is living the life too. She does have fancy degrees that tell her a whole lot more about the science part that I'm going to let her say. But she is a part of the sandwich generation and, as Gen Xers and millennials, we're the first two generations to have that moniker Nobody else before us really were carrying at the top and at the bottom.

Speaker 1:

So she's about to give us some really good juicy bits. She has invented a product, an app, that will make your lives easier. Okay, finger snaps and eyeball twitch pop, because don't we want our life to be easier? Hell yeah, hey, dr Tina, life to be easier.

Speaker 2:

Hell yeah, hey, dr Tina. Hello, we made it, we're here. We did it. I don't know what calamity is going to happen in between now and the end of this. So you know, if this feels rushed to your listeners, it's because there's some disaster waiting for us, it's true.

Speaker 1:

Correct, no matter what. We're going to talk about being a caregiver, we're going to talk about dementia and we're going to talk about supporting caregivers. You have a lot of a lot of academic stuff NYU and research and an but before that, I want to just get to the human portion of why dementia matters to you. Who did it touch? How did it impact your life?

Speaker 2:

Yeah, I mean, I will tell you I have a lot of random degrees, but next to my name and not the one thing that makes me qualified to be here is actually none of those. So I will tell you a little. I for living professionally, I study Alzheimer's disease and I study the impacts it has on families and caregivers, and my whole personal mission is to improve the lives of family caregivers. Because it's selfish, because I am one, because I know how horrible it is. So you know, I use my day job to basically advance my own personal agenda to make all of our lives a little bit easier and a little bit better. So you know, I want you to paint me as a nice, selfless person, but I'm really, really. This is about me and you love, you have 53 million people, and so I will tell you that my father has been living for the last couple of years with end-stage renal disease, with end-stage kidney disease, and I don't think I ever realized how important our kidneys were to our body until I realized that when they don't work, they take a toll on your brain, they take a toll on your heart, they take a toll on it takes a toll and it takes a toll on your family and he recently has been. He's actually been living with me for the last couple months and he fell, he broke his hip, he got, went to a skilled rehab facility, got COVID wasn't himself went to the hospital, has been on dialysis, fell out of the hospital bed, had a brain bleed. So we've had a lot of things going on and we have successfully in the last three months. We brought him home and we have rehabilitated him. But he's had a health journey and so has my mother.

Speaker 2:

Everybody's a caregiver and if you're not a caregiver, yeah, you're going to be. So you're welcome in advance. But that's what you have to look forward to. I see patients, I'm a research scientist, I have a PhD, I have NIH grants from the National Institutes of Health to study Alzheimer's and I don't think I knew a lick about what caregivers go through until I was on the other side of the table when I was like you expect me to do what? Manage his medications, make sure he follows a strict diet, coordinate all his appointments, monitor for signs and symptoms, check his blood pressure regularly.

Speaker 1:

I'm like we how, how and who and when and under what scenario could I possibly do that in a productive and effective manner? And oh yeah, I'm supposed to have a life or take my own blood pressure and eat and monitor my own glucose levels. And heaven forbid if you have children or a job or you're in a relationship with someone romantically or you want to go to the grocery store or go on a hike or vote or whatever it is.

Speaker 2:

I have three young kids, you know, they're 11, eight and five. I have aging parents. I'm in the thick of it. I have a full-time job and my story is not very different from many, many millions of people in this country and across the world who are living the same life. So you know, we are you, me and the other 53 million people who do this every day we are the backbones of this health care system.

Speaker 1:

Right.

Speaker 2:

And that's not a good thing.

Speaker 1:

No, it absolutely is. It's all it's awful because while I, it is my honor to care for my mom I'm not trained and the fact that I am helping to keep the health system afloat should be scary. That's the same as saying the three-year-old is in charge of the house, Like that shouldn't be the case. Quantitatively speaking, letting me be in charge of all my mama's medical everything where I am actually engaging and leading doctors in discussions because they're overwhelmed and can't keep up technically should scare everybody. If you remove the fact that, oh yeah, it sounds great because Jay's willing to care for her mom, but I don't know shit. That's what everybody needs to remember. I don't know shit. I can fall for a really bad. You know Google, go down into the black hole, I get to on the wrong article and I could get excited about a bad supplement.

Speaker 2:

Hey, jay, you want to know a little secret. I have a PhD and several other degrees and I can prescribe things and see patients, and I don't know shit either. When it comes to your own family, none of that matters. I stood outside a major Alzheimer's conference not too long ago and there was a physician pacing up and down the halls and I kept overhearing. He kept getting up in the middle of these talks and he was on the phone and I heard him at one point say and this stuck with me forever he said the hardest patient I've ever had is my father and he was like a leading expert. He had given us six talks and I was like well, that made me feel a lot better.

Speaker 2:

So we are not prepared to do this, nobody is prepared to do this and for this to happen to them because the objectivity is lost. We have many personal responsibilities that we're juggling, our lives are increasingly complex. We have so many moving parts. We're trying to do so much and we can do so much. I think the other is the other thing. You can Google things, you can take them and you should take an active role in your loved one's care, and the reason that you have to do that is because there's nobody else that's going to fill that. That's true, one's care, and the reason that you have to do that is because there's nobody else that's going to fill that.

Speaker 1:

That's true, that's true. So a few more points before we get into the community that you started, as well as the product that you invented. When it comes to your care style or the type of caree that your father is the lion's share of the Parenting Up community. We're family caregivers just figuring this out day by day, much like what you described. But as much as you think you don't know, doc, you still know more than us. So so, um, or you have the ability to call a colleague and I have to, like, go into my, my chart and hope somebody answers before the month ends. You know, um, what was it that let you all know, you or anyone else in the family? Hey, something's wrong with dad, and this is not just like a urinary tract infection or a kidney stone. And then, secondarily, what has been the biggest hurdle in getting him to let you be his caregiver, kind of?

Speaker 2:

let you be his caregiver, kind of yeah. So I think it is. This whole experience has made me realize it is amazing what we are willing to live with and how far we generations you know in front of us are willing to go before they need help. And this this was something I was always taught is that if you wait for someone to ask for help at a certain age demographic, you're going to be waiting the rest of your life. I am terrible at asking for help and that apparently only gets worse as you age.

Speaker 2:

And you know, when I saw the implications of this okay, high blood pressure, no big deal. Okay, diabetes happens to the best of us, you know. But it is not until you see the impact on their function, on the impact on your relationship. And you know, I think one of the things we don't celebrate enough about our parents' generation, and one of the things that science actually shows that causes them to live so long, is their resilience, is their stoicism, is their ability to tolerate discomfort, far more so than me or anyone in our generation. And you know, I think because of that they were not as reactive when these components of illness started to impact their function and their life and we have. You know, when I look at aging from a perspective of an innovator and a scientist, I'm focusing on your wellspan, not your lifespan. So I don't want you to live 80 bad years. You know, I like wait.

Speaker 1:

Hold on doc. I like that. Let's just pause for a second. Your wellspan yes, that feels like a hashtag, like I don't you know what. I don't want a lifespan either. I want a well span. I would like you to make sure we're going to. I will get in touch with you offline. I want to make sure I know my well span. I could give two. You know what's about a lifespan.

Speaker 2:

And that's. But that's why we care about all this right. That's why we intervene. We don't give you blood pressure medications because we want you on a medication or we care about a number. We don't want you to have a stroke, because if you have a stroke and then you become, either you'll die or you'll become paralyzed and you'll become weak and then you can't be independent.

Speaker 2:

What I want for people, for my family, for my patients, for any older person, is to retain their function and their independence as long as possible and to do the things they love as long as they humanly can. And when I start to see that your illness is getting in the way of you doing being with your family, even if all you love doing is sitting on your recliner and watching your show, if you can't do that anymore because you're so miserable which is what was happening to my father, I mean, he was spending his days in bed and we would just come and see it and they were trying to do so much on their own and there was this unwillingness to admit. You need help to accept. You need help because somehow, that is giving up your independence, that is accepting your life is coming to a close. Giving up your independence, that is, accepting your life is coming to a close, none of which is true, but one of the things that I believe, and why I specialize in the care of older people, is because I believe that you could intervene at any point in a person's life or illness and make them better in some way. I can't make you 20 again, okay. That's not the goal. But if you tell me what you're and when you ask me what my philosophy is and how I look at things, whether I'm looking at your mom or my mom, it's the same person centered approach.

Speaker 2:

I'm not looking for perfect numbers. That's not the goal. The goal is that I'm looking for you to spend time with your grandkids, because I know that's important to you. It's to go to the gym once a week with your friends. It's that you can drive somewhere and see a friend in the city. Those are the things that matter to you, and once you stop doing those, that's when I and really before you stop doing. That is when you should intervene. But that's how I look at it. I'm not looking at numbers, I'm not looking at diagnoses, I'm not looking at tests, and that's the realization you know we had in our own family where we were like, okay, we need to step in here.

Speaker 1:

Right.

Speaker 2:

Not because I want to take control or I want more on my overfilled plate. It's because I want to see you doing the things you love. I want to see you living. I want to see your well span. I want to see that come back.

Speaker 1:

Now, where'd this part of you come from? Did you just come to earth like this, did it? Have you always been the well-span chick Like? Were you in high school PE trying to tell people wait? I think you should do a jumping jack before you eat that sneakers.

Speaker 2:

Are you? Were you a psychologist in your life? Did you know that there's a? There's a secret behind this? All right, I'll tell you this. I'll tell you the secret, since we're going deep now. I should have been lying on the couch for this portion. No, I'll tell you this. My parents were physicians. My mother was a pioneer in her day. She's an incredible obstetrician, gynecologist who had a solo practice and was delivering 250 babies a year and had three babies of her own at home. My father was a physician as well. You know how that was possible? The secret behind that was that I had two grandmothers who lived in my house that came to this country in their 50s as older immigrants. One of my grandmothers, she's 102 years old. God bless her. She's healthier than me and you. She is the she's 102 with like the skin of a you know, 40 year old on Botox. She looks amazing.

Speaker 1:

I so love to hate her.

Speaker 2:

I know she's so, but you can't because she's so positive. Anyway, she came when my sister was born for what was meant to be a two week vacation and she took one look at my parents' life and she's like I'm never leaving. And then my then I was a third kid and she's like I don't handle three. I have three. So she was right. So she, my other grandmother, came, she's 99. And I have these super aging, badass women in my family and growing up, obviously I had physician parents, so they told me never to go into health care. They told me first, to their credit, they were like health care is broken, don't waste your time here, there ain't nothing for you here.

Speaker 1:

Run, run, run Forrest.

Speaker 2:

Save yourself. And then I said, oh, forget it Actually. Then I really I said, no, forget it Actually. Then I really I was like, no, I'm going to, I'm going to actually go into geriatrics. And they were like, okay, you might as well have gone to jail, like this is like the worst idea ever. But I was so inspired because it was in college. My first degree was in anthropology. It had nothing to do with any of this. And in my final year of college I learned for the first time in a course called Death and Dying that people in this country are living longer but they are not living better, and that the people who make the informed policy decisions, who are driving how we do healthcare in this country, most of them have never treated a patient in their entire life, and that's what I wanted to change.

Speaker 2:

I went to Georgetown University as an undergraduate. I was very politically oriented. I see the impacts of policy in my everyday work, which is why you and I are suffering because there aren't policies in place to support caregivers. We're working on it, but we need more of them. And when I saw what my grandmothers looked like, I was also inspired by my grandmother's journeys as immigrants people coming to this country in later life. How do you start a new life at that point? Their positivity, their spirituality, how they maintain their health and wisdom, their level of productive engagement, and how that kept them cognitively sharp All of that was fascinating to me, and I have been fortunate enough to channel it into a career that really is working towards supporting systemic change for families like mine and yours. Um, where you know you, we're, I'm going to, we're going to talk technology soon, but artificial intelligence is never going to replace the adult daughter in my house.

Speaker 1:

That's right. That's right. Are you in the DMV area now?

Speaker 2:

No, I'm in New York, so I'm at NYU where I spend most of my time, but my heart is always in the DMV area. I'm a proud Georgetown Hoya and love it there.

Speaker 1:

I understand what you mean about the policy and activism that can be, that can flourish. If you're having any academic experience in Washington DC, it's so open. I mean the political process. At least you feel All right, I'm not here, this is not a political podcast, but as a young adult you feel that you can get involved, you can roll up your sleeves and throw your elbows in the game with other people and that someone will listen and at least pitch your idea to see if it lands.

Speaker 2:

And the important note on that, on caregiving whatever your political leanings are, you are at some point going to be affected and impacted by caregiving, and I think that's super important to think about and think about the infrastructure for people like all of us, because, whatever your leanings are, the impacts of what we do affect how much you and I can work, how much we can contribute to society, how much time we can spend with her, and the implications are endless. So you know, I'm really proud of this, the work that I've done just to build support regardless of political leanings, and I think it's going to be a big issue going forward because we're finally seeing it and we're making ourselves heard and visible, and that's the best thing.

Speaker 1:

Now, this is a quick punchy one. Did you have to uh, almost make your dad go for extra treatment and get diagnosed with this renal failure? Or did he, a physician, say all right, you know what, I've pushed it as long as I can.

Speaker 2:

So that's a great question. I have to say, I stayed out of it for as long as I possibly could, stayed out of it for as long as I possibly could and when I, at some point, I got to a point like this does not make sense. This is what I think really has inspired this portion of my journey, which is that this woman, who they loved and they loved their doctor. They had a great relationship with her and she was very smart, but she was seeing him for 15 minutes. She was not seeing what I saw at home. She did not know who he was a year ago that he was walking around, running driving places, feeling good. It was almost like he walked into her office and she's like, oh, this is, this is his baseline, this is who he is and you know, because of that, was very reluctant to intervene and didn't.

Speaker 2:

And that's really what inspired me is to do this, and we'll talk about the app and why I created it. But this is a really important parallel to why that is bias and I was like, okay, well, we just have to keep you a lot and there was a lot of non intervention and let's wait and see. And he was reluctant. As I said, that stoicism, that that hardiness was not really transparent about how much this was impacting his life.

Speaker 1:

So her previous connection to him. She did not lean into it, for whatever reason I'm not here to judge. She did not lean into that to access information along the way. As to hey dude, what happened? Like you were jumping rope and riding a skateboard nine months ago and now you're on a walker.

Speaker 2:

The difference is she didn't ask what he was doing. Nine months ago she didn't know. You know, and that's what that is. One thing I teach people is that when you go, had I been there, and now it's easy for me to play Monday morning quarterback, it's so, is Um and um, you know it. So it's easy for me to go look back. But I wish and this is what I've only learned now, so I'm sharing it with all of you, hoping that it can you know, is I wish I had been there.

Speaker 2:

And I said this is what he looked like eight months ago. This is what he was doing. This is what he does all day. Now he's in his bed. Any good provider should say this is not acceptable and any good provider would be aggressive about that. No-transcript people and that they were coordinating and they were speaking to each other. No.

Speaker 1:

And none of them were.

Speaker 2:

That's when I realized that was my job and that's what I was going to each other no, none of them were. That's when I realized that was my job and that's what I was going to be doing. And then, and that, you know, god bless my mother. She was an amazed, she's amazing, and she really gave me the knowledge of what you needed to collect. But the way it was being done was part of that was why I didn't know how bad this was. Was being done was part of that was why I didn't know how bad this was. Right, like she had everything in a notebook.

Speaker 2:

There was stuff in a text dialogue. There was okay, you know, it was not in a centralized place, and so I didn't know what medicines he was on, I didn't know which doctor was saying what. I didn't you know and it. So then it took me a lot of time and a lot of catching up, and then they had to be willing to let me into that conversation. But there was a point where I had to say enough is enough, this is not acceptable. Wow, like there's a new sheriff in town.

Speaker 1:

Wow, wow. Look and telling your parents, your physician, groundbreaking, setting the standard. Parents, especially your mom, hey, I have to help you take care of your husband, dude, dude.

Speaker 2:

Let's like we should talk about that, because I think this is half the problem we deal with in the psychology of all of this All of us in this generation is the role loss. That is the number one thing that we especially for those of us who come from cultures where older adults are revered and respected for their wisdom and their knowledge.

Speaker 1:

If I may ask what it were? Both of your are your parents from the same country?

Speaker 2:

We're both, we're Indian, we're both from India and they were born there. And you know, at some point you hate to see that role shift where somebody else. You know that's not how it was meant to be. You're supposed to ask these people for sage advice, not take control of their life and their health care, but I think part of it is, and a friend told me this today.

Speaker 2:

She's dealing with her own father who has memory issues. She can't get him an appointment anywhere. She texts me five times a day saying, like the first available appointment is eight months ago. Why didn't I do that? You know I'm helping her and telling her where to go and what to do and she's like you're, like my Sherpa, and I said I think that's what we all need to be is is anybody, whether you're young or old I see this in families in my own community when you're going through serious illness like this, everything's blurred, everything's gray. That's why things get lost, that's why you need a Sherpa. Everybody needs a guide and you know, unfortunately that's hard to balance with this role loss concept of I was fully in control, I know everything, I'm your parents, I know more than you.

Speaker 1:

It's hard to correct, correct, because even if they start to lose a bit of command over their language or their gate or their finances, who will never know more than them is you, tina. You'll never know more.

Speaker 2:

It can't be you. No, and I'm going to laugh, by the way, when my youngest child shows me this, like 30 years from now, and she's like remember what you said and you better delete this recording before they, when I'm like you don't know anything.

Speaker 1:

They're going to be like. Anyway, mom, scoot over, Give me the keys.

Speaker 2:

Exactly, exactly. But that's that's really what we're dealing with is is role loss, and but also this idea that when you were going through a serious illness, whether it's dementia or anything else, you need a quarterback, you need a Sherpa, you need someone because you don't have the objectivity anymore. It's the reality.

Speaker 1:

It's so true, it's so true. And what can happen is a Sherpa can come in the form of an app.

Speaker 2:

Yes, in the form of an app. Yes, made by Dr Tina.

Speaker 1:

Tell us about it. I want to give my really loose version of it and you give the real I guess the New York Times version. Okay no-transcript.

Speaker 2:

I'll tell you why. It goes even deeper than that. So, for starters, it's called CareMobi C-A-R-E-M-O-B-I. It's completely free. It is in the app store. You can download it today. No one's stealing your data. It's completely free. This is what I feel. I've taken the lemons that were handed to me and basically made a lemon martini for everybody to enjoy.

Speaker 1:

And I really enjoy lemon martinis.

Speaker 2:

Okay, good, and I like I really enjoy lemon martinis. So here is. So let me tell you really what this is about. It is an app in which you can store and centralize all this information. So I don't want to be.

Speaker 2:

Let me tell you first that caregiving is not meant to be done alone. Okay, you should not be doing it alone. Hope you know you should be. You should have a caregiver. You should have be doing it alone. Hope you know you should be. You should have a caregiver. You should have siblings involved. If you're lucky enough to have siblings, perhaps other family members, neighbors.

Speaker 2:

This is not meant to be done alone. It is meant to you need a village and that village it should not be done by one individual or one family. I do my work in adult day programs because I actually think I'm just going to put this out there that, in the absence of a real meaningful treatment for dementia, adult day programs are one of the best options we have to keep people healthy and at home and productively engaged. But we need to engage all of these people. Engage them, not me calling the shots, me doing everything, and me. I need to be able to go out of the house and do my job and know that my father's going to get the right medication at the right time.

Speaker 2:

Right, exactly it shouldn't be that hard. We live in 2024. Yes, right it should not be that hard. Right so what CareMobi is is precisely an app for that. It allows you to create a care team, so I'm the caregiver I can invite and delete, should I get into a fight with anybody else?

Speaker 1:

That is the most important thing and delete. You know, even some um dating apps now don't allow you have to be on there like a month before you can delete people Like I'm not. I don't listen. I can walk out of any bar whenever I want to. How are you going to hold me hostage on this stupid app?

Speaker 2:

Listen, this thing isn't even sexy enough to be a day-to-day. We know caregiving's not that sexy, so we let people out of this. But yes, you're absolutely right. So you control who's on your care team. All right, it's very simple. We've been praised for how easy this is to use and if you know the people that I've tested this I've tested this in rural Tennessee. I've tested this with Spanish speaking older adults. I've tested this with my family my hyper educated Like anybody can use this.

Speaker 1:

You had me at rural Tennessee. I'm from Alabama, rural Tennessee, honey that's. They don't even want to use an app.

Speaker 2:

They're stars, they are doing such a great job. So, essentially, you invite the caregiver, you invite anybody to your care team that's involved. So, whether it's the home health aid, whether it's your siblings, whether it's the adult daycare center staff members, then all of you can share day-to-day updates. Okay, here it has a place for you to put an updated medication list with reminders and push notifications. So at 12 o'clock you get a notification Dad needs to take his medicine and you can mark that it was taken.

Speaker 2:

And if I'm not the one giving it to him the aid that's with him we'll get the push notification and she says what's that? It's taken. So that way I have peace of mind. That way, when my sister takes him to the doctor, and it's taken. So that way I have peace of mind. That way, when my sister takes him to the doctor and it's not me and the doctor says well, what's his? What medications is he on? It's not, I don't know. Or he shows up with a pill box, a brown bag. No, it's all there, this is what he's taking. This is not what you prescribed, that he didn't fill because it was too expensive, or he didn't like the side effects. This is what he's actually taking at home, right?

Speaker 1:

Like because there's proof, because it's in the app. Exactly, and you should see me. I am constantly showing up with a gallon size plastic bag. We got two of them. That's my answer. Yes, so here it is, and I don't know which one she stopped taking. Please look in the MyChart.

Speaker 2:

Exactly, and that's the thing. The MyChart. This is something very important. Mychart is what is happening in that office. It is what he prescribed. What the doctor prescribed is not what your family necessarily takes at home, and when they're prescribing medications what they call PRN or as needed, you know I want to know how often is he taking the pain medication, how often does he need Tylenol, and with this you can track that so that it gives them more informed.

Speaker 1:

If he's taking four Tylenol every day, we're not managing this. That's right. That means the prescription medications are not doing their job, or some. There's a crack in the system. Exactly, I love it.

Speaker 2:

What I want people to know who are listening is that 99% of healthcare happens outside the doctor's office. Only 18 minutes of the visit of healthcare is spent talking to you, and of that visit, by the way. Of that 18 minutes, you talk for five of them, all right. So you better have your ducks in a row about what you're going to say and what you're going to ask. Research also shows that people only remember 50% of what was said in the appointment, and that's those are people without memory impairments, all right. So let me give you the context. That is why we created this, so that I don't have to go to every appointment, so that in the, when it says he has an appointment, this is the doctor's name, this is the location and here are all the questions to ask. It's all in the app. You put that in the appointment section. When the doctor asks, how has he been eating, because we honed in, we did hundreds of hours Our app is really funded by the National Institutes of Health, so thank you, taxpayers, you're welcome, you're welcome.

Speaker 1:

I feel even better about this. I'm kind of I'm an investor.

Speaker 2:

You're an investor and you and you now you get to reap the benefits of it. So thank you. But really, we did hundreds of hours of interviews with family caregivers, with physicians, with nurse practitioners, with staff in adult day programs. We ask these people what information are you collecting in the community? And we ask doctors what information actually matters to you to make a proper healthcare decision for somebody. What are you interested in? And they're like well, we need to know how they're eating, they're sleeping, their medications are. You know they have their laundry list and we took that and we made it into an easy to use, super user-friendly mobile application. So you know, if they want to know dad's losing weight, is it because he's not eating or is there something pathological?

Speaker 1:

That allows everyone on the team to be synchronized, which is amazing. Who made the app? If you design the app too, this interview is over. It's over because you're some kind of supernova alien person.

Speaker 2:

I will tell you. I showed up, we worked with a wonderful product development agency in Vancouver, canada, called Input Logic and the beauty of having extremely talented, young 20 and 30 somethings create something like this is that I was trying to make it all super fancy clinical doctor speak and they were like they're like we're trying to make this Uber, and they were right, right, like. We get praised on the ease of use all the time and that is not right.

Speaker 2:

And you know we've done hundreds of hours of user testing and prototype testing to ask people does this make sense? And I go back all the time. I change language, I change wording. If something's too clinical or technical, I make it simple and easy to use.

Speaker 1:

Good for you. Good for you Because a lot of people, with your credentials, their ego, leads them and it's difficult to let go of their citations If you follow me.

Speaker 2:

Totally. Yeah, I'll give you my. We can do a whole another podcast on my failure resume. I will tell you I will tell you, just to put this on the record, that there was. There were people who told me this would never work, that this is not worth it. It doesn't, it doesn't Do you share it with them.

Speaker 1:

Oh my God, air drop it to them. Walk by their, walk by their office, like now, like if you're on fifth Avenue and they're two blocks away, just freaking air drop. They're like oh my God, I don't even know where this contact came from. Is that, tina? What is this? Is this that thing that?

Speaker 2:

wouldn't work. The occasional LinkedIn post is my passive, aggressive Look at what I did and look at how many people and the real, the real gratifying component of this is the constant feedback I get. So we you know if you downloaded this app. Tomorrow we have a survey that we ask. It's five questions that we ask and I'm in communication with. I call them my friends from the internet, like random strangers. We have thousands of people who found this app. I don't have time to do all the fancy marketing and anything like that, but we have thousands of people who use this app, who email me with their questions about you know, or ideas, and the overwhelming expression that people give me is thank you, Thank you for doing this, because I had no place to store this.

Speaker 2:

Or another woman said to me her mother has dementia. She tried to download an app for dementia door sensors and hackers got into her bank account and she said I will never download anything without 500,000 users. She said. But then I looked you up, I looked up your studies and she said this seemed really legitimate. And she was so grateful and just said you know, all these facilities are at bare bones capacity. We're all trying to keep our parents at home and thank you for doing this. So I. It is so simple, it is such a simple innovation. But go ahead.

Speaker 2:

But I was just gonna say but we can't keep using a notebook right and I need this to be a team effort. I can't do this by myself falling through the cracks.

Speaker 1:

Our LOs are not receiving their care isn't comprehensive, because information isn't being disseminated across the board like it should, whether it's between caretakers or providers. Either way, it's just, it's just not working. So this app sounds exciting, the fact that it's free, nyu, nih, I mean, what do you do? That's enough, we got it right there. Now it's the Parents Enough podcast. We do things with a sprinkle of humor here. Give me one or two humorous stories, either of your father and your journey in caring for him, or something that has been shared with you by someone who's been using your app. Maybe they've been just talking about some trials and tribulations.

Speaker 2:

Yeah, okay, so one great story. I love my dad so much he is really I got to say what my probably my biggest fan. He doesn't always agree with what I do, but or listen to it, and that's. That's my story about this. So back in the fall, my mother actually had to unexpectedly have surgery, so she was in the hospital. I was dealing with that, but I was home with him while she was recuperating, because otherwise he would have been by himself.

Speaker 1:

And on that day, like this whole thing happened, I'm sorry, dr Tina, that is what you call a triple, triple decker sandwich. Okay, as it relates to the sandwich generation.

Speaker 2:

Okay, continue. The comical thing is that this all transpired while my parents were also decided to have the roof fixed of their home, right, so, anyways, it's. All this stuff is going on and I'm sitting, so I, you know, I I was asked to be on Sirius XM doctor radio, which I'm free, I'm on often, and but it was an important topic on this caregiving issue and they'd asked me months in advance. I couldn't reschedule, so I left the hospital. I came home, I'm sitting with my dad keeping him company and the roofers are banging and their wifi stinks in their house.

Speaker 2:

And I'm trying to do this call and I'm on live radio, I'm getting dropped and I'm waxing poetic about caregiving and facts and figures and all this less fun stuff that we're talking about now and my dad's following me from room to room.

Speaker 1:

And I'm trying.

Speaker 2:

I'm literally like trying to be in a quiet spot. The roof is banging, the Wi-Fi is going out and he's like peeking into what. Every room I come to he's like I see his face and I was like what, what, like, what? And he's like oh, I love what you're saying. He's like you have like really great ideas. I literally give you this advice and half the time you don't listen to it. So you know, it's just fascinating. When he's like you give great suggestions, I'm like well, thank you.

Speaker 1:

I didn't know. I didn't know, I didn't realize that you were having such a thoughtful engagement with other intellectuals. Okay, on the internet webs, all right. That's different, tina.

Speaker 2:

Those people should listen to you, because they need that advice, not me.

Speaker 1:

Not me, I'm fine, I got it. Oh, that's hilarious.

Speaker 2:

So you know it's. It's always, um, it's always like, as that doctor said, your hardest patient is your own, your own parent, um, but you know, it's always like, as that doctor said, your hardest patient is your own parent. But you know, I really have to say we have had so much positive feedback and so much gratitude and our mission is just so clear, and I want to speak to that point also that you made. Not everyone's using a notebook, because not everybody knows that they're supposed to be doing this, and even I it took me forever right To have that realization that I am the quarterback of this team. I have to do the communication. I have to get these people to talk to each other.

Speaker 2:

That healthcare is not set up where people naturally do this. And the biggest thing I laugh at is when everybody, when I tell people about the app and they're like well, isn't that in my chart? Again, my chart is not what happens every single day in your life. My chart is your lab results and what your doctor saw in the 18 minutes that they were with you, if you're lucky. So I want to put that out there. But one thing I really want to talk about and make sure we have time to talk about is that I realized you cannot just hand caregivers an app and say here, this is going to solve your problems. No, this is going to solve one eighth of your problems, right? One of the things that we've done in conjunction with this is we've created a page on Instagram called Enlightened Caregiver.

Speaker 1:

You beat me to it, dr. Tina. Go with it, go with it.

Speaker 2:

I just have to say I think this is even more valuable than just an app, but the idea is that we enlighten. We lighten our load through more knowledge. We're all learning together. I still learn about things from dialysis, support groups for kidney patients on Facebook, and I have textbooks sitting in front of me that you can't see right now, but I learn more from these people who live the everyday. So we're constantly training ideas. But Enlightened Caregiver is designed to give people basic tips on how to do this job they've never signed up for. You're your parents' health proxy. What does that mean? What should you know to do that job? Well, what do signs and symptoms of a urinary tract infection look like in an older person with memory impairment? They do not look like what they look like with me and you.

Speaker 1:

Right.

Speaker 2:

How do I talk to what questions should I never leave the doctor's office without asking?

Speaker 2:

What questions should I be asking when I get started on a new medication? All of this is meant to teach people how we become more effective and empowered advocates in the healthcare setting, because my goal is that people need to advocate for their loved ones to get optimal, not usual, care I don't want for my dad what everybody else got, because he is not everybody else and and care. We know that medicine has to be personalized. We know that everybody is different. We know that your setting, your social setting, impacts your outcomes. And the other thing is that healthcare is moving to something we call and you called it I'm a nerd, right, so now it's coming out, but we are moving towards a model of shared clinical decision-making. That means that no longer is it doctor knows best you, as you said earlier, you Google before you go in. You have questions to ask, but you have to be able to make sure that whatever plan of care they are putting forth is actually feasible for you to implement and that's so huge part of that dialogue.

Speaker 2:

So don't just let them say, okay, do this and do this and do that, which I was guilty of doing. You are part of making a decision. You have to ask questions. It's okay to push back, it's okay to change doctors, it's okay to ask questions, but we have to know what questions to ask and we have to know what to ask for to get optimal.

Speaker 1:

And that support is so major, dr Tina, because often it took An act of Congress or just shy of you know natural forces to even get your LO to a doctor's office, to an appointment or to be checked out or to have a test. And then on top of it, you have to push the doctor past the initial assessment. Because I know, with my mom originally, we went and they said, oh well, you know, we think, uh, you know. So my, my story is that my mom is early onset. That was brought, it's believed that it was brought.

Speaker 1:

Neurologist believe it was brought on by my father's abrupt heart attack and that sent her into shock and or the trauma of it all send her into shock and or the trauma of it all thrust her into Alzheimer's. And so they said, yeah, well, we just believe you should wait a little bit because this is likely grief and stress and you wouldn't understand because you're not married. Well, you also don't understand my mama. This is not what the hell she does. I don't give a damn what kind of stress it is. She does not perform in this way.

Speaker 1:

But initially, the first two doctors visits, the first two experts, my mom walked out saying, see, I told you. They said nothing's wrong and I didn't have enough support or strength or because, or the uh or the village behind me to keep pushing. So the other side of that story is hell. I didn't want anything else to be wrong with her other than grief or stress. It sounded good to me if you all said, ok, you know, I just give her another month and a little Tylenol and maybe give her a glass of wine and she'll be fine. I was like, well, I mean, I kind of want to believe it. I don't think so, but I kind of. So you're going back and forth. Having your uh, the enlightened caregiver community really allows people, um, that sounding board which is uh for so many people, especially early on, you have. It's a very difficult thing, is? It is very difficult and you feel so alone. So tell me how people, can anyone just sign up and join and start following?

Speaker 2:

Totally, just follow us on Instagram you need a fingerprint or eyeballs or no nothing, I mean you mentioned NIH.

Speaker 1:

You know, sometimes it's a VIP club of the 53 million people that are doing this on a daily.

Speaker 2:

I mean you mentioned NIH, you know sometimes you got to give blood. It's a VIP club of the 53 million people that are doing this on a daily basis.

Speaker 1:

I love it, I love it.

Speaker 2:

We are VIPs, though, all of us. We're all superheroes, but go log onto Instagram, follow us at enlightened enlightened caregiver. You know you're. You talk about needing a Sherpa. We talked about this. The Sherpa, the guide, help you through this. What questions to ask? It's all there. It's all there, without judgment. There's no stupid questions. I clearly I'm learning. I'm flying by the seat of my pants a little bit too at times. We all are, but so much of it is. You know, I think there's also a lot of misinformation on the internet, and what I really like to believe is that I'm giving you practical advice from my own experience, but also clinical advice from my professional experience and just trying to also, as a research scientist, bringing in evidence to this, to say this is really what works Right. So join, join me in this and I'm open to ideas. I learn from other people. We're all learning. Nobody knows how to do this.

Speaker 1:

Right, look at you still learning. What a fresh and novel concept. I'm saying that facetiously. I hope everybody in the world who's listening to Panther Up Community will go spread the rumor. You can keep learning people. It's not a zero sum game well as the community and the app, the work that you continue to do. Thank you so much for sharing it with us.

Speaker 1:

This has been such an exciting conversation, one that I was wondering. I was like what is it going to take? How many reschedules? But your commitment to making sure we got it done. I'm very excited about it and I know that it gives me hope and belief that we'll be able to do some really phenomenal things in the future.

Speaker 1:

I'm a product developer, inventor that was my second career and so, knowing what you're doing and what you've already done, I have some things swirling around in the back of my head, and we'll be. We can chat some offline. Before we go, I have to ask you a question. Okay, I end every episode with a segment I call the snuggle ups, and it's just J Smiles version of advice or a summary where I'm telling family caregivers hey, yes, this crap is very hard, but if you go ahead and lean into this thing or this, these several things your immediate journey as a family caregiver will be a bit easier. So, as a family caregiver this part right here this has nothing to do with your research or your degrees, but just as being your father's daughter and caring for him. What is the snuggle up that comes to mind for you?

Speaker 2:

That's sort of one piece of just advice and helpful.

Speaker 1:

Yeah, like like, go ahead and do it, rip the bandaid off. If you go ahead and do this as much as it sucks or as hard as it sounds or tough as it seems, your life as a family caregiver will be easier faster.

Speaker 2:

Okay, You're never going to believe, given the type of control freak that I am, but you know it is there's so much you can do. There are so many ways that you can be an effective, empowered advocate. Obviously my whole life is around that. But I have come to also learn that there are factors beyond my control and at times you have to accept that and you will know when those times are. But that doesn't mean I don't fight any harder. That doesn't mean I don't ask for things.

Speaker 2:

The body is healing. The body is meant to heal. Time will do its thing, and time often. To heal, Time will do its thing and time often whether it is during the course of an illness, whether it's for grief, time does its thing and sometimes you have to accept that time can do its thing better than you can. That said, you work your butt off. You do the best you can with the knowledge you have. If you do the best you can with the knowledge you have at a given time, you are doing everything I love it and you know I'm still working on that, but it's easy to be wax poetic about it.

Speaker 1:

But hey you, but you, you have embraced it enough to articulate it out loud uh, across all the continents, because that's where this podcast goes. So that's fantastic. Thank you so much. That is a perfect pinpoint in this delicious conversation.

Speaker 2:

Thank you. Thank you for having me, thank you for doing this, thanks for making us laugh, because it's bleak at times, and you are such a bright spot in all of this, so I'm so glad we can work together.

Speaker 1:

I appreciate it. We'll be in touch for sure. The snuggle ups. Number one y'all saw what happened in the middle of everything. I had to stop because Zetty fell on the floor. Dr Tina kept rolling with me. That's real life. In the middle of production. I needed my production podcast crew to roll with me. I needed my caregiver to roll with me, the guests to roll with me. I needed my caregiver to roll with me, the guests to roll with me. All of my therapy, coping skills, meditation, the Holy Spirit, my gut, my instinct, deep breathing, everything Just keep going. The snuggle up is to keep going Because shit can and will happen.

Speaker 1:

Number two no matter how much experience you have real world, academic, spiritual your LO is going to give you pushback. That's the way it goes. That's the way it goes At the beginning of the disease. At the end of the disease, the pushback is going to happen. Don't take it personally the amount of accolades that she's received in exactly the field of science. That her parents now need her assistance and they don't give a shit. It doesn't matter. She's just a little tea, a little bit. Go get some orange juice. So when your mom or dad or sister, cousin or whomever doesn't want to take your word for it, even though you have the receipts. Even though you have the receipts and for those of you who are not in the United States, we use that term, the receipts to mean that's proof, your proof that, yeah, I've done the work. I know what I'm talking about. It's par for the course. If you don't play golf, par for the course means you can expect it. Take a deep breath, let it go. Let it go.

Speaker 1:

Number three what have you done recently to improve your sleeping? Seriously, what have you done? I don't know. I'm going to throw out a few questions. Are you drinking, maybe a tea? You have an elixir? You take a medication, lavender? Do you read? Are you turning off your digital equipment, a sleep mask, whatever it is? Think through it more, add it to your list. It matters not only how long you're sleeping, but the quality of sleep that you get.

Speaker 1:

Caregiving is stressful, even on the days where we're not pulled into a catastrophe or to some major responsibility like oh shit, I didn't know that was about to happen. There's this undergird, this underlying little sentiment of stress that's always happening for us, this underlying little sentiment of stress that's always happening for us. So what is your quality of sleep and what have you been doing to improve it? What's up y'all?

Speaker 1:

I'm over here just mixing and scratching up stuff and reminding y'all Patreon is open. It is open and ready for you, you, you, you and your mama too. We are loading up things, all things Zetty, all things podcast, all things caregiving behind the scenes, extra stuff. J Smiles comedy is dropping with her own little collection within the Jace Mouse Studio, patreon very, very soon. It'll be less than a month, but you want to go on and get in there because there's exclusives. That's kind of time sensitive to whoever is in there first. We've already had live broadcasts for people who are already in and I'm going'll be honest because of, you know, branding matters. So there's some stuff that I just can't say and do on the world wide web that I can do, pantry. So if you want to see and know and hear and experience more of what's happening between my ears, come to the J Smile Studio, my Patreon, pantry.