August 19, 2024 • 50 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This is a new cover and I think it's slippery.
So I'm with my podcastproduction team.
We're at the end of a monstermonster day recording our final
podcast, and then my caregivercomes down to get me out the
studio and say hey, can you comehelp get me, get Zellie off the
(00:24):
floor?
And Zellie was on the couchsome kind of way, I don't know.
She snake silk, slid off.
Okay, so this also means that Igotta not only finish the
podcast but find a solution tokeep this from happening.
This has never happened before,but the way my brain works, it
(00:48):
will happen again.
Parenting Up, caregivingadventures with Comedian Day
Smiles is the intense journey ofunexpectedly being fully
responsible for my mama.
For over a decade I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
(01:09):
Spoiler alert I started comedybecause this shit is so heavy,
so be ready for the jokes.
Caregiver newbies, OGs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Prop up a caregiver, you are inthe right place.
Hi, this is Zeddy.
(01:29):
I hope you enjoy my daughter'spodcast, Is that okay?
This episode's supporter shoutout cube 468 on instagram.
(01:52):
Sis, I love how you share yourmom with us.
You know what cute.
Thank you, I appreciate that.
I always kind of I'm squeamisha little bit Should I, should I
not?
But she makes my world goaround.
Thank you so much for caring.
(02:13):
If you want to be the nextrecipient of the supporter,
shout out.
Leave a review on Apples,YouTube, Instagram, the Science
of Caregiving, a conversationwith Dr T.
(02:34):
Yeah, Okay, One moment.
Speaker 2 (02:46):
My mother's on the floor oh, lord, never adele, but
you do, you take your time thisis, this is what this, this is
the parenting up community.
Speaker 1 (03:01):
this is is reality.
This is it, baby, you can'tscript this.
Actors wouldn't even know whichrole to play.
Speaker 2 (03:12):
You know what's so smart Like?
We don't start this by sayinglike, how are you Like?
Speaker 1 (03:22):
nobody wants to know the answer to that question.
Speaker 2 (03:25):
Actually I don't.
I don't want to know how you'redoing, because you know I'm
doing, so you don't have todon't ask me parenting up
podcast.
Speaker 1 (03:34):
The best part of this entire episode is this full day
is 100% live and living colorCaregiving as a family member.
I have had to reschedule threetimes when we would start today
(04:00):
recording and then moments ago,in the beginning of recording, I
got a SOS from Zeddy'scaregiver that she was on the
floor.
You can't make this thing upand you can't ask anybody to
write it, but the reason why westill are recording today and
(04:25):
having this wonderfulconversation is that our guest
is living the life too.
She does have fancy degreesthat tell her a whole lot more
about the science part that I'mgoing to let her say.
But she is a part of thesandwich generation and, as Gen
(04:50):
Xers and millennials, we're thefirst two generations to have
that moniker Nobody else beforeus really were carrying at the
top and at the bottom.
So she's about to give us somereally good juicy bits.
She has invented a product, anapp, that will make your lives
(05:14):
easier.
Okay, finger snaps and eyeballtwitch pop, because don't we
want our life to be easier?
Hell yeah, hey, dr Tina, lifeto be easier.
Speaker 2 (05:24):
Hell yeah, hey, dr Tina.
Hello, we made it, we're here.
We did it.
I don't know what calamity isgoing to happen in between now
and the end of this.
So you know, if this feelsrushed to your listeners, it's
because there's some disasterwaiting for us, it's true.
Speaker 1 (05:42):
Correct, no matter what.
We're going to talk about beinga caregiver, we're going to
talk about dementia and we'regoing to talk about supporting
caregivers.
You have a lot of a lot ofacademic stuff NYU and research
(06:03):
and an but before that, I wantto just get to the human portion
of why dementia matters to you.
Who did it touch?
How did it impact your life?
Speaker 2 (06:16):
Yeah, I mean, I will tell you I have a lot of random
degrees, but next to my name andnot the one thing that makes me
qualified to be here isactually none of those.
So I will tell you a little.
I for living professionally, Istudy Alzheimer's disease and I
study the impacts it has onfamilies and caregivers, and my
(06:37):
whole personal mission is toimprove the lives of family
caregivers.
Because it's selfish, because Iam one, because I know how
horrible it is.
So you know, I use my day jobto basically advance my own
personal agenda to make all ofour lives a little bit easier
and a little bit better.
So you know, I want you topaint me as a nice, selfless
(06:58):
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 myfather has been living for the
last couple of years withend-stage renal disease, with
end-stage kidney disease, and Idon't think I ever realized how
important our kidneys were toour body until I realized that
(07:21):
when they don't work, they takea toll on your brain, they take
a toll on your heart, they takea toll on it takes a toll and it
takes a toll on your family andhe recently has been.
He's actually been living withme for the last couple months
and he fell, he broke his hip,he got, went to a skilled rehab
facility, got COVID wasn'thimself went to the hospital,
(07:43):
has been on dialysis, fell outof the hospital bed, had a brain
bleed.
So we've had a lot of thingsgoing on and we have
successfully in the last threemonths.
We brought him home and we haverehabilitated him.
But he's had a health journeyand so has my mother.
(08:04):
Everybody's a caregiver and ifyou're not a caregiver, yeah,
you're going to be.
So you're welcome in advance.
But that's what you have tolook forward to.
I see patients, I'm a researchscientist, I have a PhD, I have
(08:28):
NIH grants from the NationalInstitutes of Health to study
Alzheimer's and I don't think Iknew a lick about what
caregivers go through until Iwas on the other side of the
table when I was like you expectme to do what?
Manage his medications, makesure he follows a strict diet,
coordinate all his appointments,monitor for signs and symptoms,
check his blood pressureregularly.
Speaker 1 (08:49):
I'm like we how, how and who and when and under what
scenario could I possibly dothat in a productive and
effective manner?
And oh yeah, I'm supposed tohave a life or take my own blood
pressure and eat and monitor myown glucose levels.
And heaven forbid if you havechildren or a job or you're in a
(09:15):
relationship with someoneromantically or you want to go
to the grocery store or go on ahike or vote or whatever it is.
Speaker 2 (09:25):
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 mystory is not very different from
many, many millions of peoplein this country and across the
world who are living the samelife.
So you know, we are you, me andthe other 53 million people who
(09:47):
do this every day we are thebackbones of this health care
system.
Speaker 1 (09:53):
Right.
Speaker 2 (09:53):
And that's not a good thing.
Speaker 1 (09:57):
No, it absolutely is.
It's all it's awful becausewhile I, it is my honor to care
for my mom I'm not trained andthe fact that I am helping to
keep the health system afloatshould be scary.
That's the same as saying thethree-year-old is in charge of
(10:23):
the house, Like that shouldn'tbe the case.
Quantitatively speaking,letting me be in charge of all
my mama's medical everythingwhere I am actually engaging and
leading doctors in discussionsbecause they're overwhelmed and
can't keep up technically shouldscare everybody.
(10:47):
If you remove the fact that, ohyeah, it sounds great because
Jay's willing to care for hermom, but I don't know shit.
That's what everybody needs toremember.
I don't know shit.
I can fall for a really bad.
You know Google, go down intothe black hole, I get to on the
wrong article and I could getexcited about a bad supplement.
Speaker 2 (11:10):
Hey, jay, you want to know a little secret.
I have a PhD and several otherdegrees and I can prescribe
things and see patients, and Idon't know shit either.
When it comes to your ownfamily, none of that matters.
I stood outside a majorAlzheimer's conference not too
long ago and there was aphysician pacing up and down the
(11:32):
halls and I kept overhearing.
He kept getting up in themiddle of these talks and he was
on the phone and I heard him atone point say and this stuck
with me forever he said thehardest patient I've ever had is
my father and he was like aleading expert.
He had given us six talks and Iwas like well, that made me
feel a lot better.
So we are not prepared to dothis, nobody is prepared to do
(11:58):
this and for this to happen tothem because the objectivity is
lost.
We have many personalresponsibilities that we're
juggling, our lives areincreasingly complex.
We have so many moving parts.
We're trying to do so much andwe can do so much.
I think the other is the otherthing.
You can Google things, you cantake them and you should take an
(12:19):
active role in your loved one'scare, and the reason that you
have to do that is becausethere's nobody else that's going
to fill that.
That's true, one's care, andthe reason that you have to do
that is because there's nobodyelse that's going to fill that.
Speaker 1 (12:28):
That's true, that's true.
So a few more points before weget into the community that you
started, as well as the productthat you invented.
When it comes to your carestyle or the type of caree that
(12:48):
your father is the lion's shareof the Parenting Up community.
We're family caregivers justfiguring this out day by day,
much like what you described.
But as much as you think youdon't know, doc, you still know
more than us.
So so, um, or you have theability to call a colleague and
(13:10):
I have to, like, go into my, mychart and hope somebody answers
before the month ends.
You know, um, what was it thatlet 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 akidney stone.
And then, secondarily, what hasbeen the biggest hurdle in
(13:37):
getting him to let you be hiscaregiver, kind of?
Speaker 2 (13:49):
let you be his caregiver, kind of yeah.
So I think it is.
This whole experience has mademe realize it is amazing what we
are willing to live with andhow far we generations you know
in front of us are willing to gobefore they need help.
And this this was something Iwas always taught is that if you
wait for someone to ask forhelp at a certain age
demographic, you're going to bewaiting the rest of your life.
I am terrible at asking forhelp and that apparently only
(14:12):
gets worse as you age.
And you know, when I saw theimplications of this okay, high
blood pressure, no big deal.
Okay, diabetes happens to thebest of us, you know.
But it is not until you see theimpact on their function, on
the impact on your relationship.
And you know, I think one ofthe things we don't celebrate
(14:35):
enough about our parents'generation, and one of the
things that science actuallyshows that causes them to live
so long, is their resilience, istheir stoicism, is their
ability to tolerate discomfort,far more so than me or anyone in
our generation.
And you know, I think becauseof that they were not as
(14:58):
reactive when these componentsof illness started to impact
their function and their lifeand we have.
You know, when I look at agingfrom a perspective of an
innovator and a scientist, I'mfocusing on your wellspan, not
your lifespan.
So I don't want you to live 80bad years.
You know, I like wait.
Speaker 1 (15:20):
Hold on doc.
I like that.
Let's just pause for a second.
Your wellspan yes, that feelslike 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 surewe're going to.
I will get in touch with youoffline.
I want to make sure I know mywell span.
I could give two.
You know what's about alifespan.
Speaker 2 (15:42):
And that's.
But that's why we care aboutall this right.
That's why we intervene.
We don't give you bloodpressure medications because we
want you on a medication or wecare about a number.
We don't want you to have astroke, because if you have a
stroke and then you become,either you'll die or you'll
become paralyzed and you'llbecome weak and then you can't
be independent.
What I want for people, for myfamily, for my patients, for any
(16:05):
older person, is to retaintheir function and their
independence as long as possibleand to do the things they love
as long as they humanly can.
And when I start to see thatyour illness is getting in the
way of you doing being with yourfamily, even if all you love
doing is sitting on yourrecliner and watching your show,
if you can't do that anymorebecause you're so miserable
(16:26):
which is what was happening tomy father, I mean, he was
spending his days in bed and wewould just come and see it and
they were trying to do so muchon 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 acceptingyour life is coming to a close.
Giving up your independence,that is, accepting your life is
(16:47):
coming to a close, none of whichis true, but one of the things
that I believe, and why Ispecialize in the care of older
people, is because I believethat you could intervene at any
point in a person's life orillness 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'reand when you ask me what my
(17:07):
philosophy is and how I look atthings, whether I'm looking at
your mom or my mom, it's thesame person centered approach.
I'm not looking for perfectnumbers.
That's not the goal.
The goal is that I'm lookingfor you to spend time with your
grandkids, because I know that'simportant to you.
It's to go to the gym once aweek with your friends.
It's that you can drivesomewhere and see a friend in
(17:30):
the city.
Those are the things thatmatter to you, and once you stop
doing those, that's when I andreally before you stop doing.
That is when you shouldintervene.
But that's how I look at it.
I'm not looking at numbers, I'mnot looking at diagnoses, I'm
not looking at tests, and that'sthe realization you know we had
in our own family where we werelike, okay, we need to step in
here.
Speaker 1 (17:49):
Right.
Speaker 2 (17:50):
Not because I want to take control or I want more on
my overfilled plate.
It's because I want to see youdoing 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 (18:01):
Now, where'd this part of you come from?
Did you just come to earth likethis, did it?
Have you always been thewell-span chick Like?
Were you in high school PEtrying to tell people wait?
I think you should do a jumpingjack before you eat that
sneakers.
Speaker 2 (18:18):
Are you?
Were you a psychologist in yourlife?
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, sincewe're going deep now.
I should have been lying on thecouch for this portion.
No, I'll tell you this.
My parents were physicians.
My mother was a pioneer in herday.
She's an incredibleobstetrician, gynecologist who
(18:40):
had a solo practice and wasdelivering 250 babies a year and
had three babies of her own athome.
My father was a physician aswell.
You know how that was possible?
The secret behind that was thatI had two grandmothers who
lived in my house that came tothis country in their 50s as
older immigrants.
One of my grandmothers, she's102 years old.
(19:02):
God bless her.
She's healthier than me and you.
She is the she's 102 with likethe skin of a you know, 40 year
old on Botox.
She looks amazing.
Speaker 1 (19:17):
I so love to hate her .
Speaker 2 (19:19):
I know she's so, but you can't because she's so
positive.
Anyway, she came when my sisterwas born for what was meant to
be a two week vacation and shetook one look at my parents'
life and she's like I'm neverleaving.
And then my then I was a thirdkid 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
(19:46):
growing up, obviously I hadphysician parents, so they told
me never to go into health care.
They told me first, to theircredit, they were like health
care is broken, don't waste yourtime here, there ain't nothing
for you here.
Speaker 1 (19:57):
Run, run, run Forrest .
Speaker 2 (19:59):
Save yourself.
And then I said, oh, forget itActually.
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, youmight as well have gone to jail,
like this is like the worstidea ever.
But I was so inspired becauseit was in college.
My first degree was inanthropology.
It had nothing to do with anyof this.
And in my final year of collegeI learned for the first time in
(20:21):
a course called Death and Dyingthat people in this country are
living longer but they are notliving better, and that the
people who make the informedpolicy decisions, who are
driving how we do healthcare inthis country, most of them have
never treated a patient in theirentire life, and that's what I
wanted to change.
I went to Georgetown Universityas an undergraduate.
I was very politically oriented.
(20:42):
I see the impacts of policy inmy everyday work, which is why
you and I are suffering becausethere aren't policies in place
to support caregivers.
We're working on it, but weneed more of them.
And when I saw what mygrandmothers looked like, I was
also inspired by mygrandmother's journeys as
immigrants people coming to thiscountry in later life.
(21:03):
How do you start a new life atthat point?
Their positivity, theirspirituality, how they maintain
their health and wisdom, theirlevel of productive engagement,
and how that kept themcognitively sharp All of that
was fascinating to me, and Ihave been fortunate enough to
channel it into a career thatreally is working towards
(21:25):
supporting systemic change forfamilies like mine and yours.
Um, where you know you, we're,I'm going to, we're going to
talk technology soon, butartificial intelligence is never
going to replace the adultdaughter in my house.
Speaker 1 (21:40):
That's right.
That's right.
Are you in the DMV area now?
Speaker 2 (21:44):
No, I'm in New York, so I'm at NYU where I spend most
of my time, but my heart isalways in the DMV area.
I'm a proud Georgetown Hoya andlove it there.
Speaker 1 (21:58):
I understand what you mean about the policy and
activism that can be, that canflourish.
If you're having any academicexperience 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
(22:20):
political podcast, but as ayoung adult you feel that you
can get involved, you can rollup your sleeves and throw your
elbows in the game with otherpeople and that someone will
listen and at least pitch youridea to see if it lands.
Speaker 2 (22:39):
And the important note on that, on caregiving
whatever your political leaningsare, you are at some point
going to be affected andimpacted by caregiving, and I
think that's super important tothink about and think about the
infrastructure for people likeall of us, because, whatever
your leanings are, the impactsof what we do affect how much
(23:00):
you and I can work, how much wecan contribute to society, how
much time we can spend with her,and the implications are
endless.
So you know, I'm really proudof this, the work that I've done
just to build supportregardless of political leanings
, and I think it's going to be abig issue going forward because
we're finally seeing it andwe're making ourselves heard and
visible, and that's the bestthing.
Speaker 1 (23:21):
Now, this is a quick punchy one.
Did you have to uh, almost makeyour dad go for extra treatment
and get diagnosed with thisrenal failure?
Or did he, a physician, say allright, you know what, I've
pushed it as long as I can.
Speaker 2 (23:39):
So that's a great question.
I have to say, I stayed out ofit for as long as I possibly
could, stayed out of it for aslong as I possibly could and
when I, at some point, I got toa point like this does not make
sense.
This is what I think really hasinspired this portion of my
journey, which is that thiswoman, who they loved and they
(24:06):
loved their doctor.
They had a great relationshipwith her and she was very smart,
but she was seeing him for 15minutes.
She was not seeing what I sawat home.
She did not know who he was ayear ago that he was walking
around, running driving places,feeling good.
It was almost like he walkedinto her office and she's like,
oh, this is, this is hisbaseline, this is who he is and
(24:27):
you know, because of that, wasvery reluctant to intervene and
didn't.
And that's really what inspiredme is to do this, and we'll talk
about the app and why I createdit.
But this is a really importantparallel to why that is bias and
(24:51):
I was like, okay, well, we justhave to keep you a lot and
there was a lot of nonintervention and let's wait and
see.
And he was reluctant.
As I said, that stoicism, thatthat hardiness was not really
transparent about how much thiswas impacting his life.
Speaker 1 (25:04):
So her previous connection to him.
She did not lean into it, forwhatever reason I'm not here to
judge.
She did not lean into that toaccess information along the way
.
As to hey dude, what happened?
Like you were jumping rope andriding a skateboard nine months
ago and now you're on a walker.
Speaker 2 (25:25):
The difference is she didn't ask what he was doing.
Nine months ago she didn't know.
You know, and that's what thatis.
One thing I teach people isthat when you go, had I been
there, and now it's easy for meto play Monday morning
quarterback, it's so, is Um andum, you know it.
So it's easy for me to go lookback.
But I wish and this is whatI've only learned now, so I'm
(25:49):
sharing it with all of you,hoping that it can you know, is
I wish I had been there.
And I said this is what helooked 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 saythis is not acceptable and any
good provider would beaggressive about that.
(26:09):
No-transcript people and thatthey were coordinating and they
(26:46):
were speaking to each other.
No.
Speaker 1 (26:49):
And none of them were .
Speaker 2 (26:50):
That's when I realized that was my job and
that's what I was going to eachother no, none of them were.
That's when I realized that wasmy 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'samazing, and she really gave me
the knowledge of what you neededto collect.
But the way it was being donewas part of that was why I
didn't know how bad this was.
Was being done was part of thatwas why I didn't know how bad
(27:14):
this was.
Right, like she had everythingin a notebook.
There was stuff in a textdialogue.
There was okay, you know, itwas not in a centralized place,
and so I didn't know whatmedicines he was on, I didn't
know which doctor was sayingwhat.
I didn't you know and it.
So then it took me a lot oftime and a lot of catching up,
and then they had to be willingto let me into that conversation
(27:35):
.
But there was a point where Ihad to say enough is enough,
this is not acceptable.
Wow, like there's a new sheriffin town.
Speaker 1 (27:46):
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 (28:06):
Let's like we should talk about that, because I think
this is half the problem wedeal with in the psychology of
all of this All of us in thisgeneration is the role loss.
That is the number one thingthat we especially for those of
us who come from cultures whereolder adults are revered and
respected for their wisdom andtheir knowledge.
Speaker 1 (28:24):
If I may ask what it were?
Both of your are your parentsfrom the same country?
Speaker 2 (28:29):
We're both, we're Indian, we're both from India
and they were born there.
And you know, at some point youhate to see that role shift
where somebody else.
You know that's not how it wasmeant to be.
You're supposed to ask thesepeople for sage advice, not take
control of their life and theirhealth care, but I think part
of it is, and a friend told methis today.
(28:52):
She's dealing with her ownfather who has memory issues.
She can't get him anappointment anywhere.
She texts me five times a daysaying, like the first available
appointment is eight months ago.
Why didn't I do that?
You know I'm helping her andtelling her where to go and what
to do and she's like you're,like my Sherpa, and I said I
(29:14):
think that's what we all need tobe is is anybody, whether
you're young or old I see thisin families in my own community
when you're going throughserious 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 youknow, unfortunately that's hard
to balance with this role lossconcept of I was fully in
(29:34):
control, I know everything, I'myour parents, I know more than
you.
Speaker 1 (29:37):
It's hard to correct, correct, because even if they
start to lose a bit of commandover their language or their
gate or their finances, who willnever know more than them is
you, tina.
You'll never know more.
Speaker 2 (29:57):
It can't be you.
No, and I'm going to laugh, bythe way, when my youngest child
shows me this, like 30 yearsfrom now, and she's like
remember what you said and youbetter delete this recording
before they, when I'm like youdon't know anything.
Speaker 1 (30:11):
They're going to be like.
Anyway, mom, scoot over, Giveme the keys.
Speaker 2 (30:15):
Exactly, exactly.
But that's that's really whatwe're dealing with is is role
loss, and but also this ideathat when you were going through
a serious illness, whether it'sdementia or anything else, you
need a quarterback, you need aSherpa, you need someone because
you don't have the objectivityanymore.
It's the reality.
Speaker 1 (30:36):
It's so true, it's so true.
And what can happen is a Sherpacan come in the form of an app.
Speaker 2 (30:49):
Yes, in the form of an app.
Yes, made by Dr Tina.
Speaker 1 (30:56):
Tell us about it.
I want to give my really looseversion of it and you give the
real I guess the New York Timesversion.
Okay no-transcript.
Speaker 2 (31:41):
I'll tell you why.
It goes even deeper than that.
So, for starters, it's calledCareMobi 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 werehanded to me and basically made
(32:03):
a lemon martini for everybodyto enjoy.
Speaker 1 (32:09):
And I really enjoy lemon martinis.
Speaker 2 (32:10):
Okay, good, and I like I really enjoy lemon
martinis.
So here is.
So let me tell you really whatthis is about.
It is an app in which you canstore and centralize all this
information.
So I don't want to be.
Let me tell you first thatcaregiving is not meant to be
done alone.
Okay, you should not be doingit alone.
Hope you know you should be.
You should have a caregiver.
(32:31):
You should have be doing italone.
Hope you know you should be.
You should have a caregiver.
You should have siblingsinvolved.
If you're lucky enough to havesiblings, perhaps other family
members, neighbors.
This is not meant to be donealone.
It is meant to you need avillage and that village it
should not be done by oneindividual or one family.
I do my work in adult dayprograms because I actually
think I'm just going to put thisout there that, in the absence
(32:51):
of a real meaningful treatmentfor dementia, adult day programs
are one of the best options wehave to keep people healthy and
at home and productively engaged.
But we need to engage all ofthese people.
Engage them, not me calling theshots, me doing everything, and
me.
I need to be able to go out ofthe house and do my job and know
(33:12):
that my father's going to getthe right medication at the
right time.
Right, exactly it shouldn't bethat hard.
We live in 2024.
Yes, right it should not bethat hard.
Right so what CareMobi is isprecisely an app for that.
It allows you to create a careteam, so I'm the caregiver I can
invite and delete, should I getinto a fight with anybody else?
Speaker 1 (33:33):
That is the most important thing and delete.
You know, even some um datingapps now don't allow you have to
be on there like a month beforeyou can delete people Like I'm
not.
I don't listen.
I can walk out of any barwhenever I want to.
How are you going to hold mehostage on this stupid app?
Speaker 2 (33:54):
Listen, this thing isn't even sexy enough to be a
day-to-day.
We know caregiving's not thatsexy, so we let people out of
this.
But yes, you're absolutelyright.
So you control who's on yourcare team.
All right, it's very simple.
We've been praised for how easythis is to use and if you know
the people that I've tested thisI've tested this in rural
Tennessee.
I've tested this with Spanishspeaking older adults.
(34:16):
I've tested this with my familymy hyper educated Like anybody
can use this.
Speaker 1 (34:21):
You had me at rural Tennessee.
I'm from Alabama, ruralTennessee, honey that's.
They don't even want to use anapp.
Speaker 2 (34:29):
They're stars, they are doing such a great job.
So, essentially, you invite thecaregiver, you invite anybody
to your care team that'sinvolved.
So, whether it's the homehealth aid, whether it's your
siblings, whether it's the adultdaycare center staff members,
then all of you can shareday-to-day updates.
Okay, here it has a place foryou to put an updated medication
(34:51):
list with reminders and pushnotifications.
So at 12 o'clock you get anotification Dad needs to take
his medicine and you can markthat it was taken.
And if I'm not the one giving itto him the aid that's with him
we'll get the push notificationand she says what's that?
It's taken.
So that way I have peace ofmind.
That way, when my sister takeshim to the doctor, and it's
(35:11):
taken.
So that way I have peace ofmind.
That way, when my sister takeshim 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 iswhat he's taking.
This is not what you prescribed, that he didn't fill because it
was too expensive, or he didn'tlike the side effects.
This is what he's actuallytaking at home, right?
Speaker 1 (35:30):
Like because there's proof, because it's in the app.
Exactly, and you should see me.
I am constantly showing up witha gallon size plastic bag.
We got two of them.
That's my answer.
Yes, so here it is, and I don'tknow which one she stopped
taking.
Please look in the MyChart.
Speaker 2 (35:50):
Exactly, and that's the thing.
The MyChart.
This is something veryimportant.
Mychart is what is happening inthat office.
It is what he prescribed.
What the doctor prescribed isnot what your family necessarily
takes at home, and when they'represcribing medications what
they call PRN or as needed, youknow I want to know how often is
he taking the pain medication,how often does he need Tylenol,
(36:16):
and with this you can track thatso that it gives them more
informed.
Speaker 1 (36:18):
If he's taking four Tylenol every day, we're not
managing this.
That's right.
That means the prescriptionmedications are not doing their
job, or some.
There's a crack in the system.
Exactly, I love it.
Speaker 2 (36:27):
What I want people to know who are listening is that
99% of healthcare happensoutside the doctor's office.
Only 18 minutes of the visit ofhealthcare is spent talking to
you, and of that visit, by theway.
Of that 18 minutes, you talkfor five of them, all right.
So you better have your ducksin a row about what you're going
to say and what you're going toask.
Research also shows that peopleonly remember 50% of what was
(36:53):
said in the appointment, andthat's those are people without
memory impairments, all right.
So let me give you the context.
That is why we created this, sothat I don't have to go to
every appointment, so that inthe, when it says he has an
appointment, this is thedoctor's name, this is the
location and here are all thequestions to ask.
It's all in the app.
(37:14):
You put that in the appointmentsection.
When the doctor asks, how hashe been eating, because we honed
in, we did hundreds of hoursOur app is really funded by the
National Institutes of Health,so thank you, taxpayers, you're
welcome, you're welcome.
Speaker 1 (37:29):
I feel even better about this.
I'm kind of I'm an investor.
Speaker 2 (37:34):
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 ofhours of interviews with family
caregivers, with physicians,with nurse practitioners, with
staff in adult day programs.
We ask these people whatinformation are you collecting
in the community?
And we ask doctors whatinformation actually matters to
(37:55):
you to make a proper healthcaredecision for somebody.
What are you interested in?
And they're like well, we needto know how they're eating,
they're sleeping, theirmedications are.
You know they have theirlaundry list and we took that
and we made it into an easy touse, super user-friendly mobile
application.
So you know, if they want toknow dad's losing weight, is it
because he's not eating or isthere something pathological?
Speaker 1 (38:17):
That allows everyone on the team to be synchronized,
which is amazing.
Who made the app?
If you design the app too, thisinterview is over.
It's over because you're somekind of supernova alien person.
Speaker 2 (38:39):
I will tell you.
I showed up, we worked with awonderful product development
agency in Vancouver, canada,called Input Logic and the
beauty of having extremelytalented, young 20 and 30
somethings create something likethis is that I was trying to
make it all super fancy clinicaldoctor speak and they were like
(39:00):
they're like we're trying tomake this Uber, and they were
right, right, like.
We get praised on the ease ofuse all the time and that is not
right.
And you know we've done hundredsof hours of user testing and
prototype testing to ask peopledoes this make sense?
And I go back all the time.
I change language, I changewording.
If something's too clinical ortechnical, I make it simple and
(39:21):
easy to use.
Speaker 1 (39:22):
Good for you.
Good for you Because a lot ofpeople, with your credentials,
their ego, leads them and it'sdifficult to let go of their
citations If you follow me.
Speaker 2 (39:35):
Totally.
Yeah, I'll give you my.
We can do a whole anotherpodcast 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 methis would never work, that this
is not worth it.
It doesn't, it doesn't Do youshare it with them.
Speaker 1 (39:53):
Oh my God, air drop it to them.
Walk by their, walk by theiroffice, like now, like if you're
on fifth Avenue and they're twoblocks away, just freaking air
drop.
They're like oh my God, I don'teven know where this contact
came from.
Is that, tina?
What is this?
Is this that thing that?
Speaker 2 (40:09):
wouldn't work.
The occasional LinkedIn post ismy passive, aggressive Look at
what I did and look at how manypeople and the real, the real
gratifying component of this isthe constant feedback I get.
So we you know if youdownloaded this app.
Tomorrow we have a survey thatwe ask.
It's five questions that we askand I'm in communication with.
I call them my friends from theinternet, like random strangers
(40:31):
.
We have thousands of people whofound this app.
I don't have time to do all thefancy marketing and anything
like that, but we have thousandsof people who use this app, who
email me with their questionsabout you know, or ideas, and
the overwhelming expression thatpeople give me is thank you,
Thank you for doing this,because I had no place to store
(40:52):
this.
Or another woman said to me hermother has dementia.
She tried to download an appfor dementia door sensors and
hackers got into her bankaccount and she said I will
never download anything without500,000 users.
She said.
But then I looked you up, Ilooked up your studies and she
said this seemed reallylegitimate.
And she was so grateful andjust said you know, all these
(41:14):
facilities are at bare bonescapacity.
We're all trying to keep ourparents at home and thank you
for doing this.
So I.
It is so simple, it is such asimple innovation.
But go ahead.
But I was just gonna say but wecan't keep using a notebook
right and I need this to be ateam effort.
I can't do this by myselffalling through the cracks.
Speaker 1 (41:33):
Our LOs are not receiving their care isn't
comprehensive, becauseinformation isn't being
(41:58):
disseminated across the boardlike it should, whether it's
between caretakers or providers.
Either way, it's just, it'sjust 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 rightthere.
Now it's the Parents Enoughpodcast.
(42:21):
We do things with a sprinkle ofhumor here.
Give me one or two humorousstories, either of your father
and your journey in caring forhim, or something that has been
shared with you by someone who'sbeen using your app.
Maybe they've been just talkingabout some trials and
(42:42):
tribulations.
Speaker 2 (42:43):
Yeah, okay, so one great story.
I love my dad so much he isreally I got to say what my
probably my biggest fan.
He doesn't always agree withwhat I do, but or listen to it,
and that's.
That's my story about this.
So back in the fall, my motheractually had to unexpectedly
have surgery, so she was in thehospital.
I was dealing with that, but Iwas home with him while she was
(43:05):
recuperating, because otherwisehe would have been by himself.
Speaker 1 (43:08):
And on that day, like this whole thing happened, I'm
sorry, dr Tina, that is what youcall a triple, triple decker
sandwich.
Okay, as it relates to thesandwich generation.
Speaker 2 (43:19):
Okay, continue.
The comical thing is that thisall transpired while my parents
were also decided to have theroof fixed of their home, right,
so, anyways, it's.
All this stuff is going on andI'm sitting, so I, you know, I I
was asked to be on Sirius XMdoctor radio, which I'm free,
I'm on often, and but it was animportant topic on this
(43:41):
caregiving issue and they'dasked me months in advance.
I couldn't reschedule, so Ileft the hospital.
I came home, I'm sitting withmy dad keeping him company and
the roofers are banging andtheir wifi stinks in their house
.
And I'm trying to do this calland I'm on live radio, I'm
getting dropped and I'm waxingpoetic about caregiving and
(44:02):
facts and figures and all thisless fun stuff that we're
talking about now and my dad'sfollowing me from room to room.
Speaker 1 (44:09):
And I'm trying.
Speaker 2 (44:09):
I'm literally like trying to be in a quiet spot.
The roof is banging, the Wi-Fiis going out and he's like
peeking into what.
Every room I come to he's likeI see his face and I was like
what, what, like, what?
And he's like oh, I love whatyou're saying.
He's like you have like reallygreat ideas.
I literally give you thisadvice and half the time you
(44:39):
don't listen to it.
So you know, it's justfascinating.
When he's like you give greatsuggestions, I'm like well,
thank you.
Speaker 1 (44:45):
I didn't know.
I didn't know, I didn't realizethat you were having such a
thoughtful engagement with otherintellectuals.
Okay, on the internet webs, allright.
That's different, tina.
Speaker 2 (45:00):
Those people should listen to you, because they need
that advice, not me.
Speaker 1 (45:03):
Not me, I'm fine, I got it.
Oh, that's hilarious.
Speaker 2 (45:07):
So you know it's.
It's always, um, it's alwayslike, as that doctor said, your
hardest patient is your own,your own parent, um, but you
know, it's always like, as thatdoctor said, your hardest
patient is your own parent.
But you know, I really have tosay we have had so much positive
feedback and so much gratitudeand our mission is just so clear
, and I want to speak to thatpoint also that you made.
Not everyone's using a notebook, because not everybody knows
(45:31):
that they're supposed to bedoing this, and even I it took
me forever right To have thatrealization that I am the
quarterback of this team.
I have to do the communication.
I have to get these people totalk to each other.
That healthcare is not set upwhere people naturally do this.
And the biggest thing I laughat is when everybody, when I
tell people about the app andthey're like well, isn't that in
my chart?
Again, my chart is not whathappens every single day in your
(45:58):
life.
My chart is your lab resultsand what your doctor saw in the
18 minutes that they were withyou, if you're lucky.
So I want to put that out there.
But one thing I really want totalk about and make sure we have
time to talk about is that Irealized you cannot just hand
caregivers an app and say here,this is going to solve your
problems.
No, this is going to solve oneeighth of your problems, right?
One of the things that we'vedone in conjunction with this is
(46:20):
we've created a page onInstagram called Enlightened
Caregiver.
Speaker 1 (46:24):
You beat me to it, dr .
Tina.
Go with it, go with it.
Speaker 2 (46:28):
I just have to say I think this is even more valuable
than just an app, but the ideais that we enlighten.
We lighten our load throughmore knowledge.
We're all learning together.
I still learn about things fromdialysis, support groups for
kidney patients on Facebook, andI have textbooks sitting in
front of me that you can't seeright now, but I learn more from
(46:49):
these people who live theeveryday.
So we're constantly trainingideas.
But Enlightened Caregiver isdesigned to give people basic
tips on how to do this jobthey've never signed up for.
You're your parents' healthproxy.
What does that mean?
What should you know to do thatjob?
Well, what do signs andsymptoms of a urinary tract
infection look like in an olderperson with memory impairment?
(47:10):
They do not look like what theylook like with me and you.
Speaker 1 (47:12):
Right.
Speaker 2 (47:13):
How do I talk to what questions should I never leave
the doctor's office withoutasking?
What questions should I beasking when I get started on a
new medication?
All of this is meant to teachpeople how we become more
effective and empoweredadvocates in the healthcare
setting, because my goal is thatpeople need to advocate for
(47:34):
their loved ones to get optimal,not usual, care I don't want
for my dad what everybody elsegot, because he is not everybody
else and and care.
We know that medicine has to bepersonalized.
We know that everybody isdifferent.
We know that your setting, yoursocial setting, impacts your
(47:54):
outcomes.
And the other thing is thathealthcare is moving to
something we call and you calledit I'm a nerd, right, so now
it's coming out, but we aremoving towards a model of shared
clinical decision-making.
That means that no longer is itdoctor knows best you, as you
said earlier, you Google beforeyou go in.
You have questions to ask, butyou have to be able to make sure
(48:16):
that whatever plan of care theyare putting forth is actually
feasible for you to implementand that's so huge part of that
dialogue.
So don't just let them say, okay, do this and do this and do
that, which I was guilty ofdoing.
You are part of making adecision.
You have to ask questions.
It's okay to push back, it'sokay to change doctors, it's
(48:37):
okay to ask questions, but wehave to know what questions to
ask and we have to know what toask for to get optimal.
Speaker 1 (48:44):
And that support is so major, dr Tina, because often
it took An act of Congress orjust shy of you know natural
forces to even get your LO to adoctor's office, to an
appointment or to be checked outor to have a test.
(49:05):
And then on top of it, you haveto push the doctor past the
initial assessment.
Because I know, with my momoriginally, we went and they
said, oh well, you know, wethink, uh, you know.
So my, my story is that my momis early onset.
(49:25):
That was brought, it's believedthat it was brought.
Neurologist believe it wasbrought on by my father's abrupt
heart attack and that sent herinto shock and or the trauma of
it all send her into shock andor the trauma of it all thrust
her into Alzheimer's.
And so they said, yeah, well,we just believe you should wait
(49:49):
a little bit because this islikely grief and stress and you
wouldn't understand becauseyou're not married.
Well, you also don't understandmy mama.
This is not what the hell shedoes.
I don't give a damn what kindof stress it is.
She does not perform in thisway.
But initially, the first twodoctors visits, the first two
experts, my mom walked outsaying, see, I told you.
(50:11):
They said nothing's wrong and Ididn't have enough support or
strength or because, or the uhor the village behind me to keep
pushing.
So the other side of that storyis hell.
I didn't want anything else tobe wrong with her other than
grief or stress.
It sounded good to me if youall said, ok, you know, I just
(50:32):
give her another month and alittle Tylenol and maybe give
her a glass of wine and she'llbe fine.
I was like, well, I mean, Ikind 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 enlightenedcaregiver community really
allows people, um, that soundingboard which is uh for so many
(50:54):
people, especially early on, youhave.
It's a very difficult thing, is?
It is very difficult and youfeel so alone.
So tell me how people, cananyone just sign up and join and
start following?
Speaker 2 (51:06):
Totally, just follow us on Instagram you need a
fingerprint or eyeballs or nonothing, I mean you mentioned
NIH.
Speaker 1 (51:14):
You know, sometimes it's a VIP club of the 53
million people that are doingthis on a daily.
Speaker 2 (51:17):
I mean you mentioned NIH, you know sometimes you got
to give blood.
It's a VIP club of the 53million people that are doing
this on a daily basis.
Speaker 1 (51:23):
I love it, I love it.
Speaker 2 (51:24):
We are VIPs, though, all of us.
We're all superheroes, but golog onto Instagram, follow us at
enlightened enlightenedcaregiver.
You know you're.
You talk about needing a Sherpa.
We talked about this.
The Sherpa, the guide, help youthrough this.
What questions to ask?
It's all there.
(51:46):
It's all there, withoutjudgment.
There's no stupid questions.
I clearly I'm learning.
I'm flying by the seat of mypants a little bit too at times.
We all are, but so much of itis.
You know, I think there's alsoa lot of misinformation on the
internet, and what I really liketo believe is that I'm giving
(52:09):
you practical advice from my ownexperience, but also clinical
advice from my professionalexperience and just trying to
also, as a research scientist,bringing in evidence to this, to
say this is really what worksRight.
So join, join me in this andI'm open to ideas.
I learn from other people.
We're all learning.
Nobody knows how to do this.
Speaker 1 (52:30):
Right, look at you still learning.
What a fresh and novel concept.
I'm saying that facetiously.
I hope everybody in the worldwho's listening to Panther Up
Community will go spread therumor.
You can keep learning people.
It's not a zero sum game wellas the community and the app,
(52:59):
the work that you continue to do.
Thank you so much for sharingit with us.
This has been such an excitingconversation, one that I was
wondering.
I was like what is it going totake?
How many reschedules?
But your commitment to makingsure we got it done.
I'm very excited about it and Iknow that it gives me hope and
belief that we'll be able to dosome really phenomenal things in
(53:24):
the future.
I'm a product developer,inventor that was my second
career and so, knowing whatyou're doing and what you've
already done, I have some thingsswirling around in the back of
my head, and we'll be.
We can chat some offline.
Before we go, I have to ask youa question.
(53:47):
Okay, I end every episode witha segment I call the snuggle ups
, and it's just J Smiles versionof advice or a summary where
I'm telling family caregivershey, yes, this crap is very hard
, but if you go ahead and leaninto this thing or this, these
(54:09):
several things your immediatejourney as a family caregiver
will be a bit easier.
So, as a family caregiver thispart right here this has nothing
to do with your research oryour degrees, but just as being
your father's daughter andcaring for him.
What is the snuggle up thatcomes to mind for you?
Speaker 2 (54:35):
That's sort of one piece of just advice and helpful
.
Speaker 1 (54:39):
Yeah, like like, go ahead and do it, rip the bandaid
off.
If you go ahead and do this asmuch 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 (54:52):
Okay, You're never going to believe, given the type
of control freak that I am, butyou know it is there's so much
you can do.
There are so many ways that youcan be an effective, empowered
advocate.
Obviously my whole life isaround that.
But I have come to also learnthat there are factors beyond my
(55:15):
control and at times you haveto accept that and you will know
when those times are.
But that doesn't mean I don'tfight any harder.
That doesn't mean I don't askfor things.
The body is healing.
The body is meant to heal.
Time will do its thing, andtime often.
(55:35):
To heal, Time will do its thingand time often whether it is
during the course of an illness,whether it's for grief, time
does its thing and sometimes youhave to accept that time can do
its thing better than you can.
That said, you work your buttoff.
You do the best you can withthe knowledge you have.
If you do the best you can withthe knowledge you have at a
(55:57):
given time, you are doingeverything I love it and you
know I'm still working on that,but it's easy to be wax poetic
about it.
Speaker 1 (56:05):
But hey you, but you, you have embraced it enough to
articulate it out loud uh,across all the continents,
because that's where thispodcast goes.
So that's fantastic.
Thank you so much.
That is a perfect pinpoint inthis delicious conversation.
Speaker 2 (56:27):
Thank you.
Thank you for having me, thankyou for doing this, thanks for
making us laugh, because it'sbleak at times, and you are such
a bright spot in all of this,so I'm so glad we can work
together.
Speaker 1 (56:39):
I appreciate it.
We'll be in touch for sure.
The snuggle ups.
Number one y'all saw whathappened in the middle of
everything.
I had to stop because Zettyfell on the floor.
(57:00):
Dr Tina kept rolling with me.
That's real life.
In the middle of production.
I needed my production podcastcrew to roll with me.
I needed my caregiver to rollwith me, the guests to roll with
me.
I needed my caregiver to rollwith me, the guests to roll with
(57:21):
me.
All of my therapy, copingskills, meditation, the Holy
Spirit, my gut, my instinct,deep breathing, everything Just
keep going.
The snuggle up is to keep goingBecause shit can and will
(57:44):
happen.
Number two no matter how muchexperience you have real world,
academic, spiritual your LO isgoing to give you pushback.
(58:10):
That's the way it goes.
That's the way it goes At thebeginning of the disease.
At the end of the disease, thepushback is going to happen.
Don't take it personally theamount of accolades that she's
(58:37):
received in exactly the field ofscience.
That her parents now need herassistance and they don't give a
shit.
It doesn't matter.
She's just a little tea, alittle bit.
Go get some orange juice.
(58:58):
So when your mom or dad orsister, cousin or whomever
doesn't want to take your wordfor it, even though you have the
receipts.
Even though you have thereceipts and for those of you
who are not in the United States, we use that term, the receipts
(59:26):
to mean that's proof, yourproof 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 forthe course means you can expect
it.
Take a deep breath, let it go.
(59:53):
Let it go.
Number three what have you donerecently to improve your
(01:00:20):
sleeping?
Seriously, what have you done?
I don't know.
I'm going to throw out a fewquestions.
Are you drinking, maybe a tea?
You have an elixir?
You take a medication, lavender?
(01:00:43):
Do you read?
Are you turning off yourdigital equipment, a sleep mask,
whatever it is?
Think through it more, add itto your list.
It matters not only how longyou're sleeping, but the quality
(01:01:08):
of sleep that you get.
Caregiving is stressful, even onthe days where we're not pulled
into a catastrophe or to somemajor responsibility like oh
shit, I didn't know that wasabout to happen.
There's this undergird, thisunderlying little sentiment of
(01:01:35):
stress that's always happeningfor us, this underlying little
sentiment of stress that'salways happening for us.
So what is your quality ofsleep and what have you been
doing to improve it?
What's up y'all?
I'm over here just mixing andscratching up stuff and
(01:01:57):
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, allthings Zetty, all things podcast
, all things caregiving behindthe scenes, extra stuff.
J Smiles comedy is droppingwith her own little collection
(01:02:18):
within the Jace Mouse Studio,patreon very, very soon.
It'll be less than a month, butyou want to go on and get in
there because there's exclusives.
That's kind of time sensitiveto whoever is in there first.
We've already had livebroadcasts for people who are
already in and I'm going'll behonest because of, you know,
(01:02:43):
branding matters.
So there's some stuff that Ijust can't say and do on the
world wide web that I can do,pantry.
So if you want to see and knowand hear and experience more of
(01:03:03):
what's happening between my ears, come to the J Smile Studio, my
Patreon, pantry.
This is a new cover and I think it's slippery.
So I'm with my podcastproduction team.
We're at the end of a monstermonster day recording our final
podcast, and then my caregivercomes down to get me out the
studio and say hey, can you comehelp get me, get Zellie off the
(00:24):
floor?
And Zellie was on the couchsome kind of way, I don't know.
She snake silk, slid off.
Okay, so this also means that Igotta not only finish the
podcast but find a solution tokeep this from happening.
This has never happened before,but the way my brain works, it
(00:48):
will happen again.
Parenting Up, caregivingadventures with Comedian Day
Smiles is the intense journey ofunexpectedly being fully
responsible for my mama.
For over a decade I've beenchipping away at the unknown,
advocating for her and pushingAlzheimer's awareness on anyone
and anything with a heartbeat.
(01:09):
Spoiler alert I started comedybecause this shit is so heavy,
so be ready for the jokes.
Caregiver newbies, OGs andvillage members just willing to
prop up a caregiver.
You are in the right place.
Prop up a caregiver, you are inthe right place.
Hi, this is Zeddy.
(01:29):
I hope you enjoy my daughter'spodcast, Is that okay?
This episode's supporter shoutout cube 468 on instagram.
(01:52):
Sis, I love how you share yourmom with us.
You know what cute.
Thank you, I appreciate that.
I always kind of I'm squeamisha little bit Should I, should I
not?
But she makes my world goaround.
Thank you so much for caring.
(02:13):
If you want to be the nextrecipient of the supporter,
shout out.
Leave a review on Apples,YouTube, Instagram, the Science
of Caregiving, a conversationwith Dr T.
(02:34):
Yeah, Okay, One moment.
Speaker 2 (02:46):
My mother's on the floor oh, lord, never adele, but
you do, you take your time thisis, this is what this, this is
the parenting up community.
Speaker 1 (03:01):
this is is reality.
This is it, baby, you can'tscript this.
Actors wouldn't even know whichrole to play.
Speaker 2 (03:12):
You know what's so smart Like?
We don't start this by sayinglike, how are you Like?
Speaker 1 (03:22):
nobody wants to know the answer to that question.
Speaker 2 (03:25):
Actually I don't.
I don't want to know how you'redoing, because you know I'm
doing, so you don't have todon't ask me parenting up
podcast.
Speaker 1 (03:34):
The best part of this entire episode is this full day
is 100% live and living colorCaregiving as a family member.
I have had to reschedule threetimes when we would start today
(04:00):
recording and then moments ago,in the beginning of recording, I
got a SOS from Zeddy'scaregiver that she was on the
floor.
You can't make this thing upand you can't ask anybody to
write it, but the reason why westill are recording today and
(04:25):
having this wonderfulconversation is that our guest
is living the life too.
She does have fancy degreesthat tell her a whole lot more
about the science part that I'mgoing to let her say.
But she is a part of thesandwich generation and, as Gen
(04:50):
Xers and millennials, we're thefirst two generations to have
that moniker Nobody else beforeus really were carrying at the
top and at the bottom.
So she's about to give us somereally good juicy bits.
She has invented a product, anapp, that will make your lives
(05:14):
easier.
Okay, finger snaps and eyeballtwitch pop, because don't we
want our life to be easier?
Hell yeah, hey, dr Tina, lifeto be easier.
Speaker 2 (05:24):
Hell yeah, hey, dr Tina.
Hello, we made it, we're here.
We did it.
I don't know what calamity isgoing to happen in between now
and the end of this.
So you know, if this feelsrushed to your listeners, it's
because there's some disasterwaiting for us, it's true.
Speaker 1 (05:42):
Correct, no matter what.
We're going to talk about beinga caregiver, we're going to
talk about dementia and we'regoing to talk about supporting
caregivers.
You have a lot of a lot ofacademic stuff NYU and research
(06:03):
and an but before that, I wantto just get to the human portion
of why dementia matters to you.
Who did it touch?
How did it impact your life?
Speaker 2 (06:16):
Yeah, I mean, I will tell you I have a lot of random
degrees, but next to my name andnot the one thing that makes me
qualified to be here isactually none of those.
So I will tell you a little.
I for living professionally, Istudy Alzheimer's disease and I
study the impacts it has onfamilies and caregivers, and my
(06:37):
whole personal mission is toimprove the lives of family
caregivers.
Because it's selfish, because Iam one, because I know how
horrible it is.
So you know, I use my day jobto basically advance my own
personal agenda to make all ofour lives a little bit easier
and a little bit better.
So you know, I want you topaint me as a nice, selfless
(06:58):
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 myfather has been living for the
last couple of years withend-stage renal disease, with
end-stage kidney disease, and Idon't think I ever realized how
important our kidneys were toour body until I realized that
(07:21):
when they don't work, they takea toll on your brain, they take
a toll on your heart, they takea toll on it takes a toll and it
takes a toll on your family andhe recently has been.
He's actually been living withme for the last couple months
and he fell, he broke his hip,he got, went to a skilled rehab
facility, got COVID wasn'thimself went to the hospital,
(07:43):
has been on dialysis, fell outof the hospital bed, had a brain
bleed.
So we've had a lot of thingsgoing on and we have
successfully in the last threemonths.
We brought him home and we haverehabilitated him.
But he's had a health journeyand so has my mother.
(08:04):
Everybody's a caregiver and ifyou're not a caregiver, yeah,
you're going to be.
So you're welcome in advance.
But that's what you have tolook forward to.
I see patients, I'm a researchscientist, I have a PhD, I have
(08:28):
NIH grants from the NationalInstitutes of Health to study
Alzheimer's and I don't think Iknew a lick about what
caregivers go through until Iwas on the other side of the
table when I was like you expectme to do what?
Manage his medications, makesure he follows a strict diet,
coordinate all his appointments,monitor for signs and symptoms,
check his blood pressureregularly.
Speaker 1 (08:49):
I'm like we how, how and who and when and under what
scenario could I possibly dothat in a productive and
effective manner?
And oh yeah, I'm supposed tohave a life or take my own blood
pressure and eat and monitor myown glucose levels.
And heaven forbid if you havechildren or a job or you're in a
(09:15):
relationship with someoneromantically or you want to go
to the grocery store or go on ahike or vote or whatever it is.
Speaker 2 (09:25):
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 mystory is not very different from
many, many millions of peoplein this country and across the
world who are living the samelife.
So you know, we are you, me andthe other 53 million people who
(09:47):
do this every day we are thebackbones of this health care
system.
Speaker 1 (09:53):
Right.
Speaker 2 (09:53):
And that's not a good thing.
Speaker 1 (09:57):
No, it absolutely is.
It's all it's awful becausewhile I, it is my honor to care
for my mom I'm not trained andthe fact that I am helping to
keep the health system afloatshould be scary.
That's the same as saying thethree-year-old is in charge of
(10:23):
the house, Like that shouldn'tbe the case.
Quantitatively speaking,letting me be in charge of all
my mama's medical everythingwhere I am actually engaging and
leading doctors in discussionsbecause they're overwhelmed and
can't keep up technically shouldscare everybody.
(10:47):
If you remove the fact that, ohyeah, it sounds great because
Jay's willing to care for hermom, but I don't know shit.
That's what everybody needs toremember.
I don't know shit.
I can fall for a really bad.
You know Google, go down intothe black hole, I get to on the
wrong article and I could getexcited about a bad supplement.
Speaker 2 (11:10):
Hey, jay, you want to know a little secret.
I have a PhD and several otherdegrees and I can prescribe
things and see patients, and Idon't know shit either.
When it comes to your ownfamily, none of that matters.
I stood outside a majorAlzheimer's conference not too
long ago and there was aphysician pacing up and down the
(11:32):
halls and I kept overhearing.
He kept getting up in themiddle of these talks and he was
on the phone and I heard him atone point say and this stuck
with me forever he said thehardest patient I've ever had is
my father and he was like aleading expert.
He had given us six talks and Iwas like well, that made me
feel a lot better.
So we are not prepared to dothis, nobody is prepared to do
(11:58):
this and for this to happen tothem because the objectivity is
lost.
We have many personalresponsibilities that we're
juggling, our lives areincreasingly complex.
We have so many moving parts.
We're trying to do so much andwe can do so much.
I think the other is the otherthing.
You can Google things, you cantake them and you should take an
(12:19):
active role in your loved one'scare, and the reason that you
have to do that is becausethere's nobody else that's going
to fill that.
That's true, one's care, andthe reason that you have to do
that is because there's nobodyelse that's going to fill that.
Speaker 1 (12:28):
That's true, that's true.
So a few more points before weget into the community that you
started, as well as the productthat you invented.
When it comes to your carestyle or the type of caree that
(12:48):
your father is the lion's shareof the Parenting Up community.
We're family caregivers justfiguring this out day by day,
much like what you described.
But as much as you think youdon't know, doc, you still know
more than us.
So so, um, or you have theability to call a colleague and
(13:10):
I have to, like, go into my, mychart and hope somebody answers
before the month ends.
You know, um, what was it thatlet 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 akidney stone.
And then, secondarily, what hasbeen the biggest hurdle in
(13:37):
getting him to let you be hiscaregiver, kind of?
Speaker 2 (13:49):
let you be his caregiver, kind of yeah.
So I think it is.
This whole experience has mademe realize it is amazing what we
are willing to live with andhow far we generations you know
in front of us are willing to gobefore they need help.
And this this was something Iwas always taught is that if you
wait for someone to ask forhelp at a certain age
demographic, you're going to bewaiting the rest of your life.
I am terrible at asking forhelp and that apparently only
(14:12):
gets worse as you age.
And you know, when I saw theimplications of this okay, high
blood pressure, no big deal.
Okay, diabetes happens to thebest of us, you know.
But it is not until you see theimpact on their function, on
the impact on your relationship.
And you know, I think one ofthe things we don't celebrate
(14:35):
enough about our parents'generation, and one of the
things that science actuallyshows that causes them to live
so long, is their resilience, istheir stoicism, is their
ability to tolerate discomfort,far more so than me or anyone in
our generation.
And you know, I think becauseof that they were not as
(14:58):
reactive when these componentsof illness started to impact
their function and their lifeand we have.
You know, when I look at agingfrom a perspective of an
innovator and a scientist, I'mfocusing on your wellspan, not
your lifespan.
So I don't want you to live 80bad years.
You know, I like wait.
Speaker 1 (15:20):
Hold on doc.
I like that.
Let's just pause for a second.
Your wellspan yes, that feelslike 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 surewe're going to.
I will get in touch with youoffline.
I want to make sure I know mywell span.
I could give two.
You know what's about alifespan.
Speaker 2 (15:42):
And that's.
But that's why we care aboutall this right.
That's why we intervene.
We don't give you bloodpressure medications because we
want you on a medication or wecare about a number.
We don't want you to have astroke, because if you have a
stroke and then you become,either you'll die or you'll
become paralyzed and you'llbecome weak and then you can't
be independent.
What I want for people, for myfamily, for my patients, for any
(16:05):
older person, is to retaintheir function and their
independence as long as possibleand to do the things they love
as long as they humanly can.
And when I start to see thatyour illness is getting in the
way of you doing being with yourfamily, even if all you love
doing is sitting on yourrecliner and watching your show,
if you can't do that anymorebecause you're so miserable
(16:26):
which is what was happening tomy father, I mean, he was
spending his days in bed and wewould just come and see it and
they were trying to do so muchon 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 acceptingyour life is coming to a close.
Giving up your independence,that is, accepting your life is
(16:47):
coming to a close, none of whichis true, but one of the things
that I believe, and why Ispecialize in the care of older
people, is because I believethat you could intervene at any
point in a person's life orillness 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'reand when you ask me what my
(17:07):
philosophy is and how I look atthings, whether I'm looking at
your mom or my mom, it's thesame person centered approach.
I'm not looking for perfectnumbers.
That's not the goal.
The goal is that I'm lookingfor you to spend time with your
grandkids, because I know that'simportant to you.
It's to go to the gym once aweek with your friends.
It's that you can drivesomewhere and see a friend in
(17:30):
the city.
Those are the things thatmatter to you, and once you stop
doing those, that's when I andreally before you stop doing.
That is when you shouldintervene.
But that's how I look at it.
I'm not looking at numbers, I'mnot looking at diagnoses, I'm
not looking at tests, and that'sthe realization you know we had
in our own family where we werelike, okay, we need to step in
here.
Speaker 1 (17:49):
Right.
Speaker 2 (17:50):
Not because I want to take control or I want more on
my overfilled plate.
It's because I want to see youdoing 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 (18:01):
Now, where'd this part of you come from?
Did you just come to earth likethis, did it?
Have you always been thewell-span chick Like?
Were you in high school PEtrying to tell people wait?
I think you should do a jumpingjack before you eat that
sneakers.
Speaker 2 (18:18):
Are you?
Were you a psychologist in yourlife?
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, sincewe're going deep now.
I should have been lying on thecouch for this portion.
No, I'll tell you this.
My parents were physicians.
My mother was a pioneer in herday.
She's an incredibleobstetrician, gynecologist who
(18:40):
had a solo practice and wasdelivering 250 babies a year and
had three babies of her own athome.
My father was a physician aswell.
You know how that was possible?
The secret behind that was thatI had two grandmothers who
lived in my house that came tothis country in their 50s as
older immigrants.
One of my grandmothers, she's102 years old.
(19:02):
God bless her.
She's healthier than me and you.
She is the she's 102 with likethe skin of a you know, 40 year
old on Botox.
She looks amazing.
Speaker 1 (19:17):
I so love to hate her .
Speaker 2 (19:19):
I know she's so, but you can't because she's so
positive.
Anyway, she came when my sisterwas born for what was meant to
be a two week vacation and shetook one look at my parents'
life and she's like I'm neverleaving.
And then my then I was a thirdkid 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
(19:46):
growing up, obviously I hadphysician parents, so they told
me never to go into health care.
They told me first, to theircredit, they were like health
care is broken, don't waste yourtime here, there ain't nothing
for you here.
Speaker 1 (19:57):
Run, run, run Forrest .
Speaker 2 (19:59):
Save yourself.
And then I said, oh, forget itActually.
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, youmight as well have gone to jail,
like this is like the worstidea ever.
But I was so inspired becauseit was in college.
My first degree was inanthropology.
It had nothing to do with anyof this.
And in my final year of collegeI learned for the first time in
(20:21):
a course called Death and Dyingthat people in this country are
living longer but they are notliving better, and that the
people who make the informedpolicy decisions, who are
driving how we do healthcare inthis country, most of them have
never treated a patient in theirentire life, and that's what I
wanted to change.
I went to Georgetown Universityas an undergraduate.
I was very politically oriented.
(20:42):
I see the impacts of policy inmy everyday work, which is why
you and I are suffering becausethere aren't policies in place
to support caregivers.
We're working on it, but weneed more of them.
And when I saw what mygrandmothers looked like, I was
also inspired by mygrandmother's journeys as
immigrants people coming to thiscountry in later life.
(21:03):
How do you start a new life atthat point?
Their positivity, theirspirituality, how they maintain
their health and wisdom, theirlevel of productive engagement,
and how that kept themcognitively sharp All of that
was fascinating to me, and Ihave been fortunate enough to
channel it into a career thatreally is working towards
(21:25):
supporting systemic change forfamilies like mine and yours.
Um, where you know you, we're,I'm going to, we're going to
talk technology soon, butartificial intelligence is never
going to replace the adultdaughter in my house.
Speaker 1 (21:40):
That's right.
That's right.
Are you in the DMV area now?
Speaker 2 (21:44):
No, I'm in New York, so I'm at NYU where I spend most
of my time, but my heart isalways in the DMV area.
I'm a proud Georgetown Hoya andlove it there.
Speaker 1 (21:58):
I understand what you mean about the policy and
activism that can be, that canflourish.
If you're having any academicexperience 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
(22:20):
political podcast, but as ayoung adult you feel that you
can get involved, you can rollup your sleeves and throw your
elbows in the game with otherpeople and that someone will
listen and at least pitch youridea to see if it lands.
Speaker 2 (22:39):
And the important note on that, on caregiving
whatever your political leaningsare, you are at some point
going to be affected andimpacted by caregiving, and I
think that's super important tothink about and think about the
infrastructure for people likeall of us, because, whatever
your leanings are, the impactsof what we do affect how much
(23:00):
you and I can work, how much wecan contribute to society, how
much time we can spend with her,and the implications are
endless.
So you know, I'm really proudof this, the work that I've done
just to build supportregardless of political leanings
, and I think it's going to be abig issue going forward because
we're finally seeing it andwe're making ourselves heard and
visible, and that's the bestthing.
Speaker 1 (23:21):
Now, this is a quick punchy one.
Did you have to uh, almost makeyour dad go for extra treatment
and get diagnosed with thisrenal failure?
Or did he, a physician, say allright, you know what, I've
pushed it as long as I can.
Speaker 2 (23:39):
So that's a great question.
I have to say, I stayed out ofit for as long as I possibly
could, stayed out of it for aslong as I possibly could and
when I, at some point, I got toa point like this does not make
sense.
This is what I think really hasinspired this portion of my
journey, which is that thiswoman, who they loved and they
(24:06):
loved their doctor.
They had a great relationshipwith her and she was very smart,
but she was seeing him for 15minutes.
She was not seeing what I sawat home.
She did not know who he was ayear ago that he was walking
around, running driving places,feeling good.
It was almost like he walkedinto her office and she's like,
oh, this is, this is hisbaseline, this is who he is and
(24:27):
you know, because of that, wasvery reluctant to intervene and
didn't.
And that's really what inspiredme is to do this, and we'll talk
about the app and why I createdit.
But this is a really importantparallel to why that is bias and
(24:51):
I was like, okay, well, we justhave to keep you a lot and
there was a lot of nonintervention and let's wait and
see.
And he was reluctant.
As I said, that stoicism, thatthat hardiness was not really
transparent about how much thiswas impacting his life.
Speaker 1 (25:04):
So her previous connection to him.
She did not lean into it, forwhatever reason I'm not here to
judge.
She did not lean into that toaccess information along the way
.
As to hey dude, what happened?
Like you were jumping rope andriding a skateboard nine months
ago and now you're on a walker.
Speaker 2 (25:25):
The difference is she didn't ask what he was doing.
Nine months ago she didn't know.
You know, and that's what thatis.
One thing I teach people isthat when you go, had I been
there, and now it's easy for meto play Monday morning
quarterback, it's so, is Um andum, you know it.
So it's easy for me to go lookback.
But I wish and this is whatI've only learned now, so I'm
(25:49):
sharing it with all of you,hoping that it can you know, is
I wish I had been there.
And I said this is what helooked 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 saythis is not acceptable and any
good provider would beaggressive about that.
(26:09):
No-transcript people and thatthey were coordinating and they
(26:46):
were speaking to each other.
No.
Speaker 1 (26:49):
And none of them were .
Speaker 2 (26:50):
That's when I realized that was my job and
that's what I was going to eachother no, none of them were.
That's when I realized that wasmy 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'samazing, and she really gave me
the knowledge of what you neededto collect.
But the way it was being donewas part of that was why I
didn't know how bad this was.
Was being done was part of thatwas why I didn't know how bad
(27:14):
this was.
Right, like she had everythingin a notebook.
There was stuff in a textdialogue.
There was okay, you know, itwas not in a centralized place,
and so I didn't know whatmedicines he was on, I didn't
know which doctor was sayingwhat.
I didn't you know and it.
So then it took me a lot oftime and a lot of catching up,
and then they had to be willingto let me into that conversation
(27:35):
.
But there was a point where Ihad to say enough is enough,
this is not acceptable.
Wow, like there's a new sheriffin town.
Speaker 1 (27:46):
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 (28:06):
Let's like we should talk about that, because I think
this is half the problem wedeal with in the psychology of
all of this All of us in thisgeneration is the role loss.
That is the number one thingthat we especially for those of
us who come from cultures whereolder adults are revered and
respected for their wisdom andtheir knowledge.
Speaker 1 (28:24):
If I may ask what it were?
Both of your are your parentsfrom the same country?
Speaker 2 (28:29):
We're both, we're Indian, we're both from India
and they were born there.
And you know, at some point youhate to see that role shift
where somebody else.
You know that's not how it wasmeant to be.
You're supposed to ask thesepeople for sage advice, not take
control of their life and theirhealth care, but I think part
of it is, and a friend told methis today.
(28:52):
She's dealing with her ownfather who has memory issues.
She can't get him anappointment anywhere.
She texts me five times a daysaying, like the first available
appointment is eight months ago.
Why didn't I do that?
You know I'm helping her andtelling her where to go and what
to do and she's like you're,like my Sherpa, and I said I
(29:14):
think that's what we all need tobe is is anybody, whether
you're young or old I see thisin families in my own community
when you're going throughserious 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 youknow, unfortunately that's hard
to balance with this role lossconcept of I was fully in
(29:34):
control, I know everything, I'myour parents, I know more than
you.
Speaker 1 (29:37):
It's hard to correct, correct, because even if they
start to lose a bit of commandover their language or their
gate or their finances, who willnever know more than them is
you, tina.
You'll never know more.
Speaker 2 (29:57):
It can't be you.
No, and I'm going to laugh, bythe way, when my youngest child
shows me this, like 30 yearsfrom now, and she's like
remember what you said and youbetter delete this recording
before they, when I'm like youdon't know anything.
Speaker 1 (30:11):
They're going to be like.
Anyway, mom, scoot over, Giveme the keys.
Speaker 2 (30:15):
Exactly, exactly.
But that's that's really whatwe're dealing with is is role
loss, and but also this ideathat when you were going through
a serious illness, whether it'sdementia or anything else, you
need a quarterback, you need aSherpa, you need someone because
you don't have the objectivityanymore.
It's the reality.
Speaker 1 (30:36):
It's so true, it's so true.
And what can happen is a Sherpacan come in the form of an app.
Speaker 2 (30:49):
Yes, in the form of an app.
Yes, made by Dr Tina.
Speaker 1 (30:56):
Tell us about it.
I want to give my really looseversion of it and you give the
real I guess the New York Timesversion.
Okay no-transcript.
Speaker 2 (31:41):
I'll tell you why.
It goes even deeper than that.
So, for starters, it's calledCareMobi 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 werehanded to me and basically made
(32:03):
a lemon martini for everybodyto enjoy.
Speaker 1 (32:09):
And I really enjoy lemon martinis.
Speaker 2 (32:10):
Okay, good, and I like I really enjoy lemon
martinis.
So here is.
So let me tell you really whatthis is about.
It is an app in which you canstore and centralize all this
information.
So I don't want to be.
Let me tell you first thatcaregiving is not meant to be
done alone.
Okay, you should not be doingit alone.
Hope you know you should be.
You should have a caregiver.
(32:31):
You should have be doing italone.
Hope you know you should be.
You should have a caregiver.
You should have siblingsinvolved.
If you're lucky enough to havesiblings, perhaps other family
members, neighbors.
This is not meant to be donealone.
It is meant to you need avillage and that village it
should not be done by oneindividual or one family.
I do my work in adult dayprograms because I actually
think I'm just going to put thisout there that, in the absence
(32:51):
of a real meaningful treatmentfor dementia, adult day programs
are one of the best options wehave to keep people healthy and
at home and productively engaged.
But we need to engage all ofthese people.
Engage them, not me calling theshots, me doing everything, and
me.
I need to be able to go out ofthe house and do my job and know
(33:12):
that my father's going to getthe right medication at the
right time.
Right, exactly it shouldn't bethat hard.
We live in 2024.
Yes, right it should not bethat hard.
Right so what CareMobi is isprecisely an app for that.
It allows you to create a careteam, so I'm the caregiver I can
invite and delete, should I getinto a fight with anybody else?
Speaker 1 (33:33):
That is the most important thing and delete.
You know, even some um datingapps now don't allow you have to
be on there like a month beforeyou can delete people Like I'm
not.
I don't listen.
I can walk out of any barwhenever I want to.
How are you going to hold mehostage on this stupid app?
Speaker 2 (33:54):
Listen, this thing isn't even sexy enough to be a
day-to-day.
We know caregiving's not thatsexy, so we let people out of
this.
But yes, you're absolutelyright.
So you control who's on yourcare team.
All right, it's very simple.
We've been praised for how easythis is to use and if you know
the people that I've tested thisI've tested this in rural
Tennessee.
I've tested this with Spanishspeaking older adults.
(34:16):
I've tested this with my familymy hyper educated Like anybody
can use this.
Speaker 1 (34:21):
You had me at rural Tennessee.
I'm from Alabama, ruralTennessee, honey that's.
They don't even want to use anapp.
Speaker 2 (34:29):
They're stars, they are doing such a great job.
So, essentially, you invite thecaregiver, you invite anybody
to your care team that'sinvolved.
So, whether it's the homehealth aid, whether it's your
siblings, whether it's the adultdaycare center staff members,
then all of you can shareday-to-day updates.
Okay, here it has a place foryou to put an updated medication
(34:51):
list with reminders and pushnotifications.
So at 12 o'clock you get anotification Dad needs to take
his medicine and you can markthat it was taken.
And if I'm not the one giving itto him the aid that's with him
we'll get the push notificationand she says what's that?
It's taken.
So that way I have peace ofmind.
That way, when my sister takeshim to the doctor, and it's
(35:11):
taken.
So that way I have peace ofmind.
That way, when my sister takeshim 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 iswhat he's taking.
This is not what you prescribed, that he didn't fill because it
was too expensive, or he didn'tlike the side effects.
This is what he's actuallytaking at home, right?
Speaker 1 (35:30):
Like because there's proof, because it's in the app.
Exactly, and you should see me.
I am constantly showing up witha gallon size plastic bag.
We got two of them.
That's my answer.
Yes, so here it is, and I don'tknow which one she stopped
taking.
Please look in the MyChart.
Speaker 2 (35:50):
Exactly, and that's the thing.
The MyChart.
This is something veryimportant.
Mychart is what is happening inthat office.
It is what he prescribed.
What the doctor prescribed isnot what your family necessarily
takes at home, and when they'represcribing medications what
they call PRN or as needed, youknow I want to know how often is
he taking the pain medication,how often does he need Tylenol,
(36:16):
and with this you can track thatso that it gives them more
informed.
Speaker 1 (36:18):
If he's taking four Tylenol every day, we're not
managing this.
That's right.
That means the prescriptionmedications are not doing their
job, or some.
There's a crack in the system.
Exactly, I love it.
Speaker 2 (36:27):
What I want people to know who are listening is that
99% of healthcare happensoutside the doctor's office.
Only 18 minutes of the visit ofhealthcare is spent talking to
you, and of that visit, by theway.
Of that 18 minutes, you talkfor five of them, all right.
So you better have your ducksin a row about what you're going
to say and what you're going toask.
Research also shows that peopleonly remember 50% of what was
(36:53):
said in the appointment, andthat's those are people without
memory impairments, all right.
So let me give you the context.
That is why we created this, sothat I don't have to go to
every appointment, so that inthe, when it says he has an
appointment, this is thedoctor's name, this is the
location and here are all thequestions to ask.
It's all in the app.
(37:14):
You put that in the appointmentsection.
When the doctor asks, how hashe been eating, because we honed
in, we did hundreds of hoursOur app is really funded by the
National Institutes of Health,so thank you, taxpayers, you're
welcome, you're welcome.
Speaker 1 (37:29):
I feel even better about this.
I'm kind of I'm an investor.
Speaker 2 (37:34):
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 ofhours of interviews with family
caregivers, with physicians,with nurse practitioners, with
staff in adult day programs.
We ask these people whatinformation are you collecting
in the community?
And we ask doctors whatinformation actually matters to
(37:55):
you to make a proper healthcaredecision for somebody.
What are you interested in?
And they're like well, we needto know how they're eating,
they're sleeping, theirmedications are.
You know they have theirlaundry list and we took that
and we made it into an easy touse, super user-friendly mobile
application.
So you know, if they want toknow dad's losing weight, is it
because he's not eating or isthere something pathological?
Speaker 1 (38:17):
That allows everyone on the team to be synchronized,
which is amazing.
Who made the app?
If you design the app too, thisinterview is over.
It's over because you're somekind of supernova alien person.
Speaker 2 (38:39):
I will tell you.
I showed up, we worked with awonderful product development
agency in Vancouver, canada,called Input Logic and the
beauty of having extremelytalented, young 20 and 30
somethings create something likethis is that I was trying to
make it all super fancy clinicaldoctor speak and they were like
(39:00):
they're like we're trying tomake this Uber, and they were
right, right, like.
We get praised on the ease ofuse all the time and that is not
right.
And you know we've done hundredsof hours of user testing and
prototype testing to ask peopledoes this make sense?
And I go back all the time.
I change language, I changewording.
If something's too clinical ortechnical, I make it simple and
(39:21):
easy to use.
Speaker 1 (39:22):
Good for you.
Good for you Because a lot ofpeople, with your credentials,
their ego, leads them and it'sdifficult to let go of their
citations If you follow me.
Speaker 2 (39:35):
Totally.
Yeah, I'll give you my.
We can do a whole anotherpodcast 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 methis would never work, that this
is not worth it.
It doesn't, it doesn't Do youshare it with them.
Speaker 1 (39:53):
Oh my God, air drop it to them.
Walk by their, walk by theiroffice, like now, like if you're
on fifth Avenue and they're twoblocks away, just freaking air
drop.
They're like oh my God, I don'teven know where this contact
came from.
Is that, tina?
What is this?
Is this that thing that?
Speaker 2 (40:09):
wouldn't work.
The occasional LinkedIn post ismy passive, aggressive Look at
what I did and look at how manypeople and the real, the real
gratifying component of this isthe constant feedback I get.
So we you know if youdownloaded this app.
Tomorrow we have a survey thatwe ask.
It's five questions that we askand I'm in communication with.
I call them my friends from theinternet, like random strangers
(40:31):
.
We have thousands of people whofound this app.
I don't have time to do all thefancy marketing and anything
like that, but we have thousandsof people who use this app, who
email me with their questionsabout you know, or ideas, and
the overwhelming expression thatpeople give me is thank you,
Thank you for doing this,because I had no place to store
(40:52):
this.
Or another woman said to me hermother has dementia.
She tried to download an appfor dementia door sensors and
hackers got into her bankaccount and she said I will
never download anything without500,000 users.
She said.
But then I looked you up, Ilooked up your studies and she
said this seemed reallylegitimate.
And she was so grateful andjust said you know, all these
(41:14):
facilities are at bare bonescapacity.
We're all trying to keep ourparents at home and thank you
for doing this.
So I.
It is so simple, it is such asimple innovation.
But go ahead.
But I was just gonna say but wecan't keep using a notebook
right and I need this to be ateam effort.
I can't do this by myselffalling through the cracks.
Speaker 1 (41:33):
Our LOs are not receiving their care isn't
comprehensive, becauseinformation isn't being
(41:58):
disseminated across the boardlike it should, whether it's
between caretakers or providers.
Either way, it's just, it'sjust 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 rightthere.
Now it's the Parents Enoughpodcast.
(42:21):
We do things with a sprinkle ofhumor here.
Give me one or two humorousstories, either of your father
and your journey in caring forhim, or something that has been
shared with you by someone who'sbeen using your app.
Maybe they've been just talkingabout some trials and
(42:42):
tribulations.
Speaker 2 (42:43):
Yeah, okay, so one great story.
I love my dad so much he isreally I got to say what my
probably my biggest fan.
He doesn't always agree withwhat I do, but or listen to it,
and that's.
That's my story about this.
So back in the fall, my motheractually had to unexpectedly
have surgery, so she was in thehospital.
I was dealing with that, but Iwas home with him while she was
(43:05):
recuperating, because otherwisehe would have been by himself.
Speaker 1 (43:08):
And on that day, like this whole thing happened, I'm
sorry, dr Tina, that is what youcall a triple, triple decker
sandwich.
Okay, as it relates to thesandwich generation.
Speaker 2 (43:19):
Okay, continue.
The comical thing is that thisall transpired while my parents
were also decided to have theroof fixed of their home, right,
so, anyways, it's.
All this stuff is going on andI'm sitting, so I, you know, I I
was asked to be on Sirius XMdoctor radio, which I'm free,
I'm on often, and but it was animportant topic on this
(43:41):
caregiving issue and they'dasked me months in advance.
I couldn't reschedule, so Ileft the hospital.
I came home, I'm sitting withmy dad keeping him company and
the roofers are banging andtheir wifi stinks in their house
.
And I'm trying to do this calland I'm on live radio, I'm
getting dropped and I'm waxingpoetic about caregiving and
(44:02):
facts and figures and all thisless fun stuff that we're
talking about now and my dad'sfollowing me from room to room.
Speaker 1 (44:09):
And I'm trying.
Speaker 2 (44:09):
I'm literally like trying to be in a quiet spot.
The roof is banging, the Wi-Fiis going out and he's like
peeking into what.
Every room I come to he's likeI see his face and I was like
what, what, like, what?
And he's like oh, I love whatyou're saying.
He's like you have like reallygreat ideas.
I literally give you thisadvice and half the time you
(44:39):
don't listen to it.
So you know, it's justfascinating.
When he's like you give greatsuggestions, I'm like well,
thank you.
Speaker 1 (44:45):
I didn't know.
I didn't know, I didn't realizethat you were having such a
thoughtful engagement with otherintellectuals.
Okay, on the internet webs, allright.
That's different, tina.
Speaker 2 (45:00):
Those people should listen to you, because they need
that advice, not me.
Speaker 1 (45:03):
Not me, I'm fine, I got it.
Oh, that's hilarious.
Speaker 2 (45:07):
So you know it's.
It's always, um, it's alwayslike, as that doctor said, your
hardest patient is your own,your own parent, um, but you
know, it's always like, as thatdoctor said, your hardest
patient is your own parent.
But you know, I really have tosay we have had so much positive
feedback and so much gratitudeand our mission is just so clear
, and I want to speak to thatpoint also that you made.
Not everyone's using a notebook, because not everybody knows
(45:31):
that they're supposed to bedoing this, and even I it took
me forever right To have thatrealization that I am the
quarterback of this team.
I have to do the communication.
I have to get these people totalk to each other.
That healthcare is not set upwhere people naturally do this.
And the biggest thing I laughat is when everybody, when I
tell people about the app andthey're like well, isn't that in
my chart?
Again, my chart is not whathappens every single day in your
(45:58):
life.
My chart is your lab resultsand what your doctor saw in the
18 minutes that they were withyou, if you're lucky.
So I want to put that out there.
But one thing I really want totalk about and make sure we have
time to talk about is that Irealized you cannot just hand
caregivers an app and say here,this is going to solve your
problems.
No, this is going to solve oneeighth of your problems, right?
One of the things that we'vedone in conjunction with this is
(46:20):
we've created a page onInstagram called Enlightened
Caregiver.
Speaker 1 (46:24):
You beat me to it, dr .
Tina.
Go with it, go with it.
Speaker 2 (46:28):
I just have to say I think this is even more valuable
than just an app, but the ideais that we enlighten.
We lighten our load throughmore knowledge.
We're all learning together.
I still learn about things fromdialysis, support groups for
kidney patients on Facebook, andI have textbooks sitting in
front of me that you can't seeright now, but I learn more from
(46:49):
these people who live theeveryday.
So we're constantly trainingideas.
But Enlightened Caregiver isdesigned to give people basic
tips on how to do this jobthey've never signed up for.
You're your parents' healthproxy.
What does that mean?
What should you know to do thatjob?
Well, what do signs andsymptoms of a urinary tract
infection look like in an olderperson with memory impairment?
(47:10):
They do not look like what theylook like with me and you.
Speaker 1 (47:12):
Right.
Speaker 2 (47:13):
How do I talk to what questions should I never leave
the doctor's office withoutasking?
What questions should I beasking when I get started on a
new medication?
All of this is meant to teachpeople how we become more
effective and empoweredadvocates in the healthcare
setting, because my goal is thatpeople need to advocate for
(47:34):
their loved ones to get optimal,not usual, care I don't want
for my dad what everybody elsegot, because he is not everybody
else and and care.
We know that medicine has to bepersonalized.
We know that everybody isdifferent.
We know that your setting, yoursocial setting, impacts your
(47:54):
outcomes.
And the other thing is thathealthcare is moving to
something we call and you calledit I'm a nerd, right, so now
it's coming out, but we aremoving towards a model of shared
clinical decision-making.
That means that no longer is itdoctor knows best you, as you
said earlier, you Google beforeyou go in.
You have questions to ask, butyou have to be able to make sure
(48:16):
that whatever plan of care theyare putting forth is actually
feasible for you to implementand that's so huge part of that
dialogue.
So don't just let them say, okay, do this and do this and do
that, which I was guilty ofdoing.
You are part of making adecision.
You have to ask questions.
It's okay to push back, it'sokay to change doctors, it's
(48:37):
okay to ask questions, but wehave to know what questions to
ask and we have to know what toask for to get optimal.
Speaker 1 (48:44):
And that support is so major, dr Tina, because often
it took An act of Congress orjust shy of you know natural
forces to even get your LO to adoctor's office, to an
appointment or to be checked outor to have a test.
(49:05):
And then on top of it, you haveto push the doctor past the
initial assessment.
Because I know, with my momoriginally, we went and they
said, oh well, you know, wethink, uh, you know.
So my, my story is that my momis early onset.
(49:25):
That was brought, it's believedthat it was brought.
Neurologist believe it wasbrought on by my father's abrupt
heart attack and that sent herinto shock and or the trauma of
it all send her into shock andor the trauma of it all thrust
her into Alzheimer's.
And so they said, yeah, well,we just believe you should wait
(49:49):
a little bit because this islikely grief and stress and you
wouldn't understand becauseyou're not married.
Well, you also don't understandmy mama.
This is not what the hell shedoes.
I don't give a damn what kindof stress it is.
She does not perform in thisway.
But initially, the first twodoctors visits, the first two
experts, my mom walked outsaying, see, I told you.
(50:11):
They said nothing's wrong and Ididn't have enough support or
strength or because, or the uhor the village behind me to keep
pushing.
So the other side of that storyis hell.
I didn't want anything else tobe wrong with her other than
grief or stress.
It sounded good to me if youall said, ok, you know, I just
(50:32):
give her another month and alittle Tylenol and maybe give
her a glass of wine and she'llbe fine.
I was like, well, I mean, Ikind 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 enlightenedcaregiver community really
allows people, um, that soundingboard which is uh for so many
(50:54):
people, especially early on, youhave.
It's a very difficult thing, is?
It is very difficult and youfeel so alone.
So tell me how people, cananyone just sign up and join and
start following?
Speaker 2 (51:06):
Totally, just follow us on Instagram you need a
fingerprint or eyeballs or nonothing, I mean you mentioned
NIH.
Speaker 1 (51:14):
You know, sometimes it's a VIP club of the 53
million people that are doingthis on a daily.
Speaker 2 (51:17):
I mean you mentioned NIH, you know sometimes you got
to give blood.
It's a VIP club of the 53million people that are doing
this on a daily basis.
Speaker 1 (51:23):
I love it, I love it.
Speaker 2 (51:24):
We are VIPs, though, all of us.
We're all superheroes, but golog onto Instagram, follow us at
enlightened enlightenedcaregiver.
You know you're.
You talk about needing a Sherpa.
We talked about this.
The Sherpa, the guide, help youthrough this.
What questions to ask?
It's all there.
(51:46):
It's all there, withoutjudgment.
There's no stupid questions.
I clearly I'm learning.
I'm flying by the seat of mypants a little bit too at times.
We all are, but so much of itis.
You know, I think there's alsoa lot of misinformation on the
internet, and what I really liketo believe is that I'm giving
(52:09):
you practical advice from my ownexperience, but also clinical
advice from my professionalexperience and just trying to
also, as a research scientist,bringing in evidence to this, to
say this is really what worksRight.
So join, join me in this andI'm open to ideas.
I learn from other people.
We're all learning.
Nobody knows how to do this.
Speaker 1 (52:30):
Right, look at you still learning.
What a fresh and novel concept.
I'm saying that facetiously.
I hope everybody in the worldwho's listening to Panther Up
Community will go spread therumor.
You can keep learning people.
It's not a zero sum game wellas the community and the app,
(52:59):
the work that you continue to do.
Thank you so much for sharingit with us.
This has been such an excitingconversation, one that I was
wondering.
I was like what is it going totake?
How many reschedules?
But your commitment to makingsure we got it done.
I'm very excited about it and Iknow that it gives me hope and
belief that we'll be able to dosome really phenomenal things in
(53:24):
the future.
I'm a product developer,inventor that was my second
career and so, knowing whatyou're doing and what you've
already done, I have some thingsswirling around in the back of
my head, and we'll be.
We can chat some offline.
Before we go, I have to ask youa question.
(53:47):
Okay, I end every episode witha segment I call the snuggle ups
, and it's just J Smiles versionof advice or a summary where
I'm telling family caregivershey, yes, this crap is very hard
, but if you go ahead and leaninto this thing or this, these
(54:09):
several things your immediatejourney as a family caregiver
will be a bit easier.
So, as a family caregiver thispart right here this has nothing
to do with your research oryour degrees, but just as being
your father's daughter andcaring for him.
What is the snuggle up thatcomes to mind for you?
Speaker 2 (54:35):
That's sort of one piece of just advice and helpful
.
Speaker 1 (54:39):
Yeah, like like, go ahead and do it, rip the bandaid
off.
If you go ahead and do this asmuch 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 (54:52):
Okay, You're never going to believe, given the type
of control freak that I am, butyou know it is there's so much
you can do.
There are so many ways that youcan be an effective, empowered
advocate.
Obviously my whole life isaround that.
But I have come to also learnthat there are factors beyond my
(55:15):
control and at times you haveto accept that and you will know
when those times are.
But that doesn't mean I don'tfight any harder.
That doesn't mean I don't askfor things.
The body is healing.
The body is meant to heal.
Time will do its thing, andtime often.
(55:35):
To heal, Time will do its thingand time often whether it is
during the course of an illness,whether it's for grief, time
does its thing and sometimes youhave to accept that time can do
its thing better than you can.
That said, you work your buttoff.
You do the best you can withthe knowledge you have.
If you do the best you can withthe knowledge you have at a
(55:57):
given time, you are doingeverything I love it and you
know I'm still working on that,but it's easy to be wax poetic
about it.
Speaker 1 (56:05):
But hey you, but you, you have embraced it enough to
articulate it out loud uh,across all the continents,
because that's where thispodcast goes.
So that's fantastic.
Thank you so much.
That is a perfect pinpoint inthis delicious conversation.
Speaker 2 (56:27):
Thank you.
Thank you for having me, thankyou for doing this, thanks for
making us laugh, because it'sbleak at times, and you are such
a bright spot in all of this,so I'm so glad we can work
together.
Speaker 1 (56:39):
I appreciate it.
We'll be in touch for sure.
The snuggle ups.
Number one y'all saw whathappened in the middle of
everything.
I had to stop because Zettyfell on the floor.
(57:00):
Dr Tina kept rolling with me.
That's real life.
In the middle of production.
I needed my production podcastcrew to roll with me.
I needed my caregiver to rollwith me, the guests to roll with
me.
I needed my caregiver to rollwith me, the guests to roll with
(57:21):
me.
All of my therapy, copingskills, meditation, the Holy
Spirit, my gut, my instinct,deep breathing, everything Just
keep going.
The snuggle up is to keep goingBecause shit can and will
(57:44):
happen.
Number two no matter how muchexperience you have real world,
academic, spiritual your LO isgoing to give you pushback.
(58:10):
That's the way it goes.
That's the way it goes At thebeginning of the disease.
At the end of the disease, thepushback is going to happen.
Don't take it personally theamount of accolades that she's
(58:37):
received in exactly the field ofscience.
That her parents now need herassistance and they don't give a
shit.
It doesn't matter.
She's just a little tea, alittle bit.
Go get some orange juice.
(58:58):
So when your mom or dad orsister, cousin or whomever
doesn't want to take your wordfor it, even though you have the
receipts.
Even though you have thereceipts and for those of you
who are not in the United States, we use that term, the receipts
(59:26):
to mean that's proof, yourproof 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 forthe course means you can expect
it.
Take a deep breath, let it go.
(59:53):
Let it go.
Number three what have you donerecently to improve your
(01:00:20):
sleeping?
Seriously, what have you done?
I don't know.
I'm going to throw out a fewquestions.
Are you drinking, maybe a tea?
You have an elixir?
You take a medication, lavender?
(01:00:43):
Do you read?
Are you turning off yourdigital equipment, a sleep mask,
whatever it is?
Think through it more, add itto your list.
It matters not only how longyou're sleeping, but the quality
(01:01:08):
of sleep that you get.
Caregiving is stressful, even onthe days where we're not pulled
into a catastrophe or to somemajor responsibility like oh
shit, I didn't know that wasabout to happen.
There's this undergird, thisunderlying little sentiment of
(01:01:35):
stress that's always happeningfor us, this underlying little
sentiment of stress that'salways happening for us.
So what is your quality ofsleep and what have you been
doing to improve it?
What's up y'all?
I'm over here just mixing andscratching up stuff and
(01:01:57):
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, allthings Zetty, all things podcast
, all things caregiving behindthe scenes, extra stuff.
J Smiles comedy is droppingwith her own little collection
(01:02:18):
within the Jace Mouse Studio,patreon very, very soon.
It'll be less than a month, butyou want to go on and get in
there because there's exclusives.
That's kind of time sensitiveto whoever is in there first.
We've already had livebroadcasts for people who are
already in and I'm going'll behonest because of, you know,
(01:02:43):
branding matters.
So there's some stuff that Ijust can't say and do on the
world wide web that I can do,pantry.
So if you want to see and knowand hear and experience more of
(01:03:03):
what's happening between my ears, come to the J Smile Studio, my
Patreon, pantry.
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