Transcript
WEBVTT
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This is a new cover and I think it's slippery.
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So I'm with my podcast production team.
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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?
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And Zellie was on the couch some kind of way, I don't know.
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She snake silk, slid off.
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Okay, so this also means that I gotta not only finish the podcast but find a solution to keep this from happening.
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This has never happened before, but the way my brain works, it will happen again.
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Parenting Up, caregiving adventures with Comedian Day Smiles is the intense journey of unexpectedly being fully responsible for my mama.
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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.
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Spoiler alert I started comedy because this shit is so heavy, so be ready for the jokes.
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Caregiver newbies, OGs and village members just willing to prop up a caregiver.
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You are in the right place.
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Prop up a caregiver, you are in the right place.
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Hi, this is Zeddy.
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I hope you enjoy my daughter's podcast, Is that okay?
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This episode's supporter shout out cube 468 on instagram.
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Sis, I love how you share your mom with us.
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You know what cute.
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Thank you, I appreciate that.
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I always kind of I'm squeamish a little bit Should I, should I not?
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But she makes my world go around.
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Thank you so much for caring.
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If you want to be the next recipient of the supporter, shout out.
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Leave a review on Apples, YouTube, Instagram, the Science of Caregiving, a conversation with Dr T.
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Yeah, Okay, One moment.
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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.
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this is is reality.
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This is it, baby, you can't script this.
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Actors wouldn't even know which role to play.
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You know what's so smart Like?
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We don't start this by saying like, how are you Like?
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nobody wants to know the answer to that question.
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Actually I don't.
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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.
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The best part of this entire episode is this full day is 100% live and living color Caregiving as a family member.
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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.
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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.
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She does have fancy degrees that tell her a whole lot more about the science part that I'm going to let her say.
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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.
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So she's about to give us some really good juicy bits.
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She has invented a product, an app, that will make your lives easier.
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Okay, finger snaps and eyeball twitch pop, because don't we want our life to be easier?
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Hell yeah, hey, dr Tina, life to be easier.
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Hell yeah, hey, dr Tina.
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Hello, we made it, we're here.
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We did it.
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I don't know what calamity is going to happen in between now and the end of this.
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So you know, if this feels rushed to your listeners, it's because there's some disaster waiting for us, it's true.
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Correct, no matter what.
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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.
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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.
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Who did it touch?
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How did it impact your life?
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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.
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So I will tell you a little.
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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.
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Because it's selfish, because I am one, because I know how horrible it is.
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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.
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So you know, I want you to paint me as a nice, selfless person, but I'm really, really.
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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.
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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.
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So we've had a lot of things going on and we have successfully in the last three months.
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We brought him home and we have rehabilitated him.
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But he's had a health journey and so has my mother.
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Everybody's a caregiver and if you're not a caregiver, yeah, you're going to be.
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So you're welcome in advance.
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But that's what you have to look forward to.
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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?
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Manage his medications, make sure he follows a strict diet, coordinate all his appointments, monitor for signs and symptoms, check his blood pressure regularly.
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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?
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And oh yeah, I'm supposed to have a life or take my own blood pressure and eat and monitor my own glucose levels.
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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.
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I have three young kids, you know, they're 11, eight and five.
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I have aging parents.
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I'm in the thick of it.
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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.
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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.
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Right.
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And that's not a good thing.
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No, it absolutely is.
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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.
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That's the same as saying the three-year-old is in charge of the house, Like that shouldn't be the case.
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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.
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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.
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That's what everybody needs to remember.
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I don't know shit.
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I can fall for a really bad.
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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.
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Hey, jay, you want to know a little secret.
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I have a PhD and several other degrees and I can prescribe things and see patients, and I don't know shit either.
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When it comes to your own family, none of that matters.
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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.
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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.
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He had given us six talks and I was like well, that made me feel a lot better.
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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.
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We have many personal responsibilities that we're juggling, our lives are increasingly complex.
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We have so many moving parts.
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We're trying to do so much and we can do so much.
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I think the other is the other thing.
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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.
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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.
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That's true, that's true.
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So a few more points before we get into the community that you started, as well as the product that you invented.
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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.
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We're family caregivers just figuring this out day by day, much like what you described.
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But as much as you think you don't know, doc, you still know more than us.
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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.
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You know, um, what was it that let you all know, you or anyone else in the family?
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Hey, something's wrong with dad, and this is not just like a urinary tract infection or a kidney stone.
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And then, secondarily, what has been the biggest hurdle in getting him to let you be his caregiver, kind of?
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let you be his caregiver, kind of yeah.
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So I think it is.
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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.
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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.
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I am terrible at asking for help and that apparently only gets worse as you age.
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And you know, when I saw the implications of this okay, high blood pressure, no big deal.
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Okay, diabetes happens to the best of us, you know.
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But it is not until you see the impact on their function, on the impact on your relationship.
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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.
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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.
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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.
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So I don't want you to live 80 bad years.
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You know, I like wait.
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Hold on doc.
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I like that.
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Let's just pause for a second.
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Your wellspan yes, that feels like a hashtag, like I don't you know what.
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I don't want a lifespan either.
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I want a well span.
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I would like you to make sure we're going to.
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I will get in touch with you offline.
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I want to make sure I know my well span.
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I could give two.
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You know what's about a lifespan.
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And that's.
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But that's why we care about all this right.
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That's why we intervene.
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We don't give you blood pressure medications because we want you on a medication or we care about a number.
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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.
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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.
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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.
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You need help to accept.
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You need help because somehow, that is giving up your independence, that is accepting your life is coming to a close.
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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.
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I can't make you 20 again, okay.
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That's not the goal.
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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.
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I'm not looking for perfect numbers.
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That's not the goal.
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The goal is that I'm looking for you to spend time with your grandkids, because I know that's important to you.
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It's to go to the gym once a week with your friends.
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It's that you can drive somewhere and see a friend in the city.
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Those are the things that matter to you, and once you stop doing those, that's when I and really before you stop doing.
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That is when you should intervene.
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But that's how I look at it.
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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.
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Right.
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Not because I want to take control or I want more on my overfilled plate.
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It's because I want to see you doing the things you love.
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I want to see you living.
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I want to see your well span.
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I want to see that come back.
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Now, where'd this part of you come from?
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Did you just come to earth like this, did it?
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Have you always been the well-span chick Like?
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Were you in high school PE trying to tell people wait?
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I think you should do a jumping jack before you eat that sneakers.
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Are you?
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Were you a psychologist in your life?
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Did you know that there's a?
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There's a secret behind this?
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All right, I'll tell you this.
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I'll tell you the secret, since we're going deep now.
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I should have been lying on the couch for this portion.
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No, I'll tell you this.
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My parents were physicians.
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My mother was a pioneer in her day.
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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.
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My father was a physician as well.
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You know how that was possible?
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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.
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One of my grandmothers, she's 102 years old.
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God bless her.
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She's healthier than me and you.
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She is the she's 102 with like the skin of a you know, 40 year old on Botox.
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She looks amazing.
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I so love to hate her.
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I know she's so, but you can't because she's so positive.
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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.
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And then my then I was a third kid and she's like I don't handle three.
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I have three.
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So she was right.
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So she, my other grandmother, came, she's 99.
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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.
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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.
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Run, run, run Forrest.
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Save yourself.
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And then I said, oh, forget it Actually.
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Then I really I said, no, forget it Actually.
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Then I really I was like, no, I'm going to, I'm going to actually go into geriatrics.
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And they were like, okay, you might as well have gone to jail, like this is like the worst idea ever.
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But I was so inspired because it was in college.
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My first degree was in anthropology.
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It had nothing to do with any of this.
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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.
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I went to Georgetown University as an undergraduate.
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I was very politically oriented.
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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.
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We're working on it, but we need more of them.
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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.
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How do you start a new life at that point?
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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.
00:21:28.752 --> 00:21:38.031
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.
00:21:40.661 --> 00:21:41.061
That's right.
00:21:41.061 --> 00:21:41.903
That's right.
00:21:41.903 --> 00:21:44.211
Are you in the DMV area now?
00:21:44.961 --> 00:21:52.923
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.
00:21:52.923 --> 00:21:58.367
I'm a proud Georgetown Hoya and love it there.
00:21:58.647 --> 00:22:07.336
I understand what you mean about the policy and activism that can be, that can flourish.
00:22:07.336 --> 00:22:15.674
If you're having any academic experience in Washington DC, it's so open.
00:22:15.674 --> 00:22:17.486
I mean the political process.
00:22:17.486 --> 00:22:38.654
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.
00:22:39.442 --> 00:23:07.810
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.
00:23:07.810 --> 00:23:20.150
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.
00:23:21.500 --> 00:23:23.767
Now, this is a quick punchy one.
00:23:23.767 --> 00:23:32.967
Did you have to uh, almost make your dad go for extra treatment and get diagnosed with this renal failure?
00:23:32.967 --> 00:23:37.645
Or did he, a physician, say all right, you know what, I've pushed it as long as I can.
00:23:39.474 --> 00:23:41.717
So that's a great question.
00:23:41.717 --> 00:23:55.028
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.
00:23:55.028 --> 00:24:06.897
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.
00:24:06.897 --> 00:24:09.864
They had a great relationship with her and she was very smart, but she was seeing him for 15 minutes.
00:24:09.864 --> 00:24:12.868
She was not seeing what I saw at home.
00:24:12.868 --> 00:24:20.057
She did not know who he was a year ago that he was walking around, running driving places, feeling good.
00:24:20.057 --> 00:24:32.564
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.
00:24:32.884 --> 00:24:37.929
And that's really what inspired me is to do this, and we'll talk about the app and why I created it.
00:24:37.929 --> 00:24:53.721
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.
00:24:53.721 --> 00:24:54.844
And he was reluctant.
00:24:54.844 --> 00:25:03.127
As I said, that stoicism, that that hardiness was not really transparent about how much this was impacting his life.
