Disrupting Care: How Neal Shah Is Revolutionizing Support for Families

Episode Transcript
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Natalie (00:02):
Announcer, Hey everyone, welcome to The
Confessions of a reluctantcaregiver podcast. We're happy
you're here on the podcast.
We're certain that you'll relateto the caregiver stories and
find comfort with your honorarysisters. Now, before we start, I
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(00:23):
full of useful information thatyou can immediately use now
let's learn more about today'sguests. Hey, Jay, hi, Natalie, I
would sing the Good morning songto you, but it's afternoon,
which means we're gonna be extrapunchy.

JJ (00:45):
It is extra saucy. And I don't think you know an
afternoon song, no.

Natalie (00:51):
Well, actually, isn't there afternoon delight? That
170s

JJ (00:56):
that's like a love song or something inappropriate, we
immediately

Natalie (00:59):
went downhill. Okay, I'm not gonna sing afternoon
delight. I have to think ofsomething. Think of something
else but our to Neil, who is ourguest, by the way, which

JJ (01:07):
is, yes, we have a guest.
He,

Natalie (01:10):
you know, let me get my voice.

JJ (01:13):
It's a boy. We

Natalie (01:14):
have a boy for the guests today, like we have had,
we recorded earlier, and we hadanother boy, and it shows you
that it's more common thanpeople think of because people
think of caregiving Jay as as afemale dominated role. And I
mean, it's built, it's beenbuilt into the culture of our
society for hundreds of years,honestly, hundreds and 1000s of

(01:38):
years. Probably I would havefallen into the hunter gatherer
group. 1000 years ago, I wouldhave preferred to be the hunter
gatherer, because everybodyknows I can't pull water, so my
line would have passed out,really down, really fast, just

JJ (01:52):
gone. Okay. Let me get started.

Natalie (01:54):
You to talk about Neil, and because Neil is going to be
super fun. I can already

JJ (02:01):
feel it absolutely, because he showed up in scrubs. Oh,
that's right. Oh my gosh.

Natalie (02:05):
You gotta watch the video. The video is worth it,
tube and watch this, becauseNeil's wearing the outfit that
every one of us want to wearevery day, absolutely.

JJ (02:13):
So let me introduce you guys. We are honored absolutely
to have Neil Shaw with us today.
He has an incredibly impressivebackground, but his best title,
he is a CEO, but he's America'schief

Natalie (02:26):
elder officer. I'm not gonna lie to you. Forget that
like I'm the chief energyofficer. The fact that I found
the elder officer

JJ (02:35):
totally his book. He has, like the best titles. His book
is titled, insured to death howhealth insurance screws over
Americans and how we take itback. So I'm like, dude, he
totally pegged it for me too. Hehelped care for his grandfather
through multiple diagnoses andend of life, but he also cared

(02:55):
for his wife through years ofcancer and serious illness.
Those events inspired him toleave his career and start a
caregiving movement, I'm tellingyou guys, that is spreading
nationwide

Natalie (03:07):
too. He was voter and did something bigger,

JJ (03:10):
I know. So Neil, we are so excited to have you here. Thank
you so much. We follow you.
You're like a You're like anicon. You're like LinkedIn,
like, ah,

Natalie (03:19):
if you don't follow on LinkedIn. You should, because
just insightful, fantastic post,and I'm going to tell you, I'm
always I feel smarter when Iread things from him. So we'll
make sure his information is inthe show notes to get connected
with him, because he's doing allkinds of cool stuff. But all of
this came about from his pastexperiences, and so now we need

(03:42):
Neil to tell his story. So Neil,I always start off with start
from the beginning. You wereborn, but give us some
background. Give us somebackground about your family and
growing up and how care cameinto your life. But you got to
give us some color so we knowsome things.

Unknown (03:58):
Yeah, sure. First of all, JJ and Natalie, thanks so
much for having me. It's reallyan exciting opportunity. Yeah, I
mean, I guess, where did Ibegin? You know, I grew up,
like, pretty humble began,beginnings. I was born in India.
Actually, my family immigratedto the US when I was a young
child. And, you know, then grewup here under like, pretty
modest circumstances. You know,it's like, oftentimes the life

(04:19):
of immigrants is like, startingover, you know. So, you know,
lived in like, pretty lowerincome household through most of
my childhood and all the way,kind of through high school was,
like, a pretty good, like,academic, you know, student, so
ended up going to university andgetting some scholarships. And,
you know, then graduated fromthe University of Pennsylvania.

(04:39):
And, yeah, initially started mycareer working in finance, you
know, I mainly just as a way to,like, repay some college loans
and kind of, like, what's thefastest way I can earn income.
And, you know, it's like, reallygood at it. You know, very
quickly out of school, I wentinto investment banking in New
York City, you know, was top ofthe class there, and got
recruited by a hedge fund. And.
And you know, there, I learnedvery quickly how to do

(05:01):
turnarounds of troubledcompanies and invest in and find
opportunities pretty quicklyover the course of three or four
years, became a partner at amulti billion dollar fund where
I was running the entirerestructuring and kind of turn
on portfolio. And then I justhappened to kind of catch a
lucky break in my career where2008 2009 financial crisis
happened, and I was the onlyperson in the firm that knew how

(05:23):
to, like, do bankruptcies andturnarounds. So I ended up
getting allocated a lot of thefirm's capital to investments
that I was finding.

JJ (05:32):
How old were you at that time? I have to jump in. I was
gonna say, because you're young,

Unknown (05:37):
yeah, in my early 40s.
Now, yeah, 27 at the time. So itwas, like, it was like, massive,
like, career break. I mean,don't get me wrong, I was like,
good, and I was working hard,but sometimes you just get
lucky, you know, like, Rightplace, right time, so I generate
a lot of returns for the fund.
And as a result of that, at 31when I was 31 one of the
investors approached me to startmy own investment organization.

(05:58):
So I started that,

Natalie (05:59):
wait, wait, wait, you're going way too fast,
though. Okay, you skipped over.
You skipped over. Like, thefundamentals of where you get,
like, this passion, like,

Unknown (06:11):
oh yeah. Okay, so childhood. Want to go

Natalie (06:13):
personal. You got sibling? Yeah, I need to know,
yeah, no, I don't care aboutwork. I need to know about,
like, tell me where this partfor care and serve came from.
And to me, I think started withlike my parents were immigrants.
We came to the United States. Ineed to know where you're from,
if you have any siblings, yes,about childhood and family
values and things, because Ithink so much of caregiving

(06:36):
comes from our past experiences.
Thank you for bad and so becauseit shows your heart, my friend,
not your brains.

Unknown (06:44):
Okay, yeah, thank you.
And I always tend to kind of,like, lead with that stuff, but
you're right. Like, I think inlike, thinking about, like, how,
you know, who am I? Like, I'm acombination of my mother and my
father, and they're quitedifferent personalities, you
know, and like, they're, like,it's very symbiotic. But, you
know, I learned a lot of myanalytical mindset from my dad,
you know, who's, like, veryanalytically oriented person,

(07:06):
and I learned a lot of care frommy mom, and both of whom I'm,
like, very close to and spent alot of time with in my
childhood, and also mygrandparents. You know, I spent
a lot of time with mygrandparents, and you know, they
all have like, differentpersonalities, but yeah, I'd say
I learned a lot of care andempathy, actually, interestingly
enough, like, I'm like, a prettyspiritual person, and I do,
like, believe in, like, agreater power, and sometimes I

(07:29):
believe in, like, destiny andfate. And one of the things
that's been reinforced to mesince I was born and since my
childhood, and I was like, borninto like, pretty modest
circumstances, is my mother,like, always, like, had like,
this prophecy that she instilledin me that you are going to,
like, do something for thefamily, you know, and you're
gonna be, like, financiallysuccessful at a very young age.

(07:50):
Like, you will be smart andcapable, but you will experience
crisis and kind of a change ofyour mindset in the middle of
your life to then direct therest of your life towards, like,
significant humanitarian work.
And it's, like, reallyinteresting, because this was
like, reinforced into me since Iwas, like, since as early as I

(08:11):
can remember, this is, like, aprophecy, yeah, that is okay.

Natalie (08:16):
Your mom is like, yeah.
I mean, she I'm like, I'm gonna,I'm gonna, I feel like I need to
go, get near her so she can beon the right path. I mean, like
I'm feeling your vibes, to beable to say, to have that kind
of encouragement, and you ableto pull Are you an only child?
No, I have a younger sister.

(08:37):
Okay, so you're the oldest. Ijust need to JJ, and I love to
be like, what's your birth

Unknown (08:41):
order? What's your birth order?

Natalie (08:45):
JJ, clearly looks to be the oldest. I mean, she's got
the most wrinkles.

JJ (08:49):
Oh, that was rough. She always throws out I'm the
oldest, and Natalie is themiddle, and we have a younger
sister, so there's three of us,

Natalie (08:58):
yes, and I am yellow mustard. Neil, I feel like,
understand, if you've watchedthe videos. JJ is gray. Poupon,
I am yellow, with my mom, Emily,and Emily's the baby. Emily's
just the baby, and there's nowrong. So what's the age
difference between you and yoursister?

Unknown (09:14):
Three years, three years. Okay, well, and you're
right. Like, I think birth ordermatters a lot, you know. Like,
it matters a lot. And, like,the, you know, upbringing, like,
sometimes the eldest, like, hasa lot of the pressure of, you
know, kind of the family in away, and then, like, maybe the
younger one, it maybe is treateda little bit more with kid
gloves, anyway. So I've kind ofobserved that, you know,

(09:35):
there's, there's good and bad ofall, but yeah, so that's it.
That's So, that's our, like,core families. Like, yeah, it's
mom and dad and younger sister.
Would you say culturally?

Natalie (09:44):
Because I think this is important. Do you think
culturally care was a priority?
Something that was that yourfamily talked about? Was there
any kind of assumption? Like, ofcourse, because you mentioned
you were with your grandparentsa lot, which we were, too. Yeah.
We grew up with our grandparentsand all of our cousins, all of
our people. And every Sundaywent to church. Everybody got

(10:06):
together. We all got fattogether. It was great, yeah,
yeah.

Unknown (10:12):
I think that matters a lot. I think it matters a lot,
you know, culturally. And, youknow, like, an interesting thing
you said earlier, where you weretalking about, like, you made
the joke about hunter gathererso it's actually really
interesting. Like, I've thoughtabout this a lot, and I've read
about this a lot that, you know,human history was a lot more
equitable in terms of, like, theroles of men and women. And if

(10:32):
you study how hunter gatherertribes operate, it's a lot more
egalitarian. You know, it's, Ithink the division of the sexes
is a agricultural thing, whichis like the last few 1000 years
of human life, where roles wereso significantly divided, and
how you work and who'sresponsible or what. But I think
a lot of like when you study andread about like ancient hunter

(10:55):
and gatherer societies, thereare way more egalitarian, and
some of that is still true todayin many different cultures.
There's actually a great book Iread a few years ago. I don't
know if you're familiar with it,but it's like a big feminist
book in the 1980s called thechalice and the blade. And I
would highly recommend it, youknow, if anyone hasn't read it,
but it really made me, like,rethink history, because, you
know, nowadays it's almost likeprevailing view that, like,

(11:16):
there's different types ofexpectations, but in like,
studying ancient societies andtheir writings, and, you know,
their imagery, there were waymore egalitarian civilizations,
you know, 1000s of years ago.
And I think that's kind ofsomething cool so. And anyway,
I'll pause there, but I haveanother thought, no, no,

Natalie (11:37):
but I think culture plays a part our our past
experiences play such asignificant part in who we are
and what was modeled to us. Andbecause we're talking about
this, we've never really talkedabout this before in the sense
of, I'm a big fan JJ knows I'mbig fan of Bruce Perry, and he
as a psychiatrist, child andadolescent psychiatrist, but

(11:57):
talked about how relationshipswork and how we learned from one
another. And when we were inthose hunter gatherer groups, we
lived in multi generationalhouseholds, and and the children
learned what their roles were atcertain certain ages. Because
they lived in multi generationalhouseholds, it was never really
a question, because they theymodeled and they observed what

(12:18):
they were supposed to do atevery age. And I think, you
know, we've gotten away fromthat. You know, technology is a
great thing, but it can also hasit's we've become a bit more
disconnected from our families.
And it sounds to me like youwere really kind of close to
your family growing up, whichnaturally would, I'm sure your
parents weren't thinking, willNeil help care for us? Will Neil
help, you know, and your sister?

(12:42):
Will there be questions? And nowpeople really do question. I
wonder if my children will helpcare for me. And then there's
this question of, should they,

Unknown (12:51):
yeah, and, and it goes both ways. It goes both ways
too. It's like, it's like, Ithink the thing works when it's
like, not that everybody's kindof calculating, in a way, but
it's kind of like implied, if,like, mutually beneficial, you
know, if, like, yeah,grandparents, parents and
children are spending a lot oftime with each other, doing
things for each other. Sothere's kind of like an
implicit, you know, return,right? And I think the more you

(13:15):
kind of, like, break that down,which you're right, like, that
is one of the biggest, like,sadness of the way the modern
society set up, you know, like,even now, like, I live very
close to my parents. Like, Ilive 10 minutes drive away. I
live 10 minutes for my sister.
And like, we're, like, veryfocused on, like, you know, I
have a young daughter, you know,my sister has two kids, and
then, like, we see my mom anddad all the time, and it's like,
you have to be very consciousabout trying to create that,

(13:36):
because modern society creates alot of things. Of somebody gets
a job here and they have tomove, and somebody goes to
school here, and then prettysoon, like, the family is, like,
kind of broken apart. Yeah, Ithink you have to be very
conscious about that. So yeah, Ithink that's one of the perils
of modern society.

JJ (13:53):
So I know that one of your first experiences, or at least
the one that we had talked aboutin your history, was you helped
care for your grandfather. Iskind of an introduction. So you
said, you've got a daughter,you've got, of course, you got a
spouse. Where does all of thisfall? So when did you start
taking care of your helping

Unknown (14:13):
care? Yes, this was, yeah, when I was younger, you
know. So now I'm in my early40s. This was in my early 30s.
And, you know, actually, like,my grandfather went through
like, a multi year, you know,kind of like decline process of,
you know, through dementia,through kidney failure, through
cancer, and then end of lifecare. And really, like, my

(14:34):
family was doing a lot of thecare, my mom primarily, and that
was kind of like, I'm, like, theperson in the family that
everybody relies on for, like,research and care coordination
just kind of, like, figure newthings out, right? Research,
yeah, that's my strength, right?
I'm, like, an analytical person.
I enjoy that. So, you know,there I went through that whole

(14:54):
journey. It was my first forayinto, like, like direct care.
And actually the biggestrealization. To me during that
point was, you know, becausethere's a perception that, like,
even when we were living inIndia before we moved here, like
American Healthcare is awesome,which it is in many ways. But
what you realize is that socialcare, which is, like a massive
component of healthcare, isreally lacking, you know. So, so

(15:16):
when you are in like, you know,and you guys may have heard this
from dementia support groups orcancer support groups. But,
like, it's like, one persondoesn't get dementia, the family
gets the values, you know,because it's like, every it's
like, okay, yeah, there's somemedical stuff that can be done.
You know, there's sometherapeutics now and back then,
they weren't even thateffective, right? Like,

(15:37):
nowadays, there's some that aremoderately effective, but, like,
much of it is like, what's thefamily gonna do? You know, it's
like, home based care is notreally supported. Medicare
doesn't cover anything, like,your private health insurance
doesn't cover anything. What'sthe hospital gonna do? You know,
they're not gonna keep somebodyaround all day, you know,
keeping your mom or dad orgrandparents safe, yeah. So that
entire thing falls on a family.
And that was, like, my firstforay into realizing the social

(15:58):
care structure in America is,like, completely broken, like it
is out of reach and out ofaffordability for many people to
get actual care help, like,whether it's resource
navigation, whether it's justhaving a nice person to give you
a break so you can, kind oflike, go do your job. My mom was
managing her career at thatpoint. I believe she was in her
mid 50s at that time, and it wasjust like the amount of strain

(16:20):
and responsibility was insane.
And critically, the realizationthat we had through that
experience is, every time we tryto get care support, it was so
bad. It was like, unreliable, itwas high cost. It was really
guilt ridden, you know, in termsof like, you would leave
somebody with him, and, youknow, if you came back from

(16:40):
work, you know, he's in the roomasking for help or a glass of
water, and somebody's elsegoofing off in the other room,
you know, kind of on their phoneor watching TV. And, you know, I
don't want to knock the CareWorkers of America, you know, I
believe there are very wellintentioned people who are doing
great work in this field, andmany people who do view it as a
calling. But I think it's reallythe economic structure of the
care industry that that carework, which is some of the most

(17:03):
important work in someone'slife, right, especially for the
person who is receiving the careis treated and have the same
view on education, too. It'ssome of the lowest paid work in
the country, which is kind of athat should be a damning of the
society. You know that this ishow we value care for our not
just older population, this ishow we value care for our
children. This is how we valuecare for middle aged people

(17:25):
going through cancer andchildren with disabilities.
These are some of the lowestpaying jobs in the country, and
that is like an absolutetragedy, because what happens
when the job is low paying, it'snot done well, or that person is
super stressed out, that they'rethey did a night shift last
night doing something else, andthen they're coming in during
the day because they can't makeends meet. So it is really, I
think the structure of the caresystem is so bad that you cannot

(17:48):
blame the care workers. I thinkyou have to blame the system.

Natalie (17:51):
I think you're exactly right. I'm gonna We're over
time. I'm gonna jump into abreak because I want to jump
back into this. Because I thinkwhat we're doing is we're
talking about direct care andyour own experience, but we're
also sprinkling in macro levelissues, and when I say macro for
our listeners, we're talkingabout system issues, a

(18:12):
healthcare system and and whythere's so much flaw. And when
you're in the thick of it,you're trying to figure out, why
is this so dang hard to navigatewell, because the system is
dysfunctional. Yeah, you, Ipromise it's not you.

Unknown (18:25):
Thanks for bringing that up. Because a lot of times
I thought, What am I missing?
Like, I'm not researching itenough. I haven't found the
right option. Maybe I'll do morework and find something else. A
lot of times you feel veryisolated, especially if it's
your first rodeo going throughcare. You're just like, I must
be doing something wrong, youknow, why am I not finding good
help?

Natalie (18:42):
Exactly which never helps, but we will be right back

Unknown (18:49):
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(19:11):
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JJ (19:24):
All right, everybody, we are back here with Neil Shaw, and
let me tell you something. We'reon our soapbox, so I'm sorry.
We're talking about some macrolevel issues, but also, Neil
mentioned something that thatreally touched me, and that
truth is that you always kind offeel like it's your fault, like,
what am I doing wrong? Whenactually it's some bigger
issues. And you see that whenyou're a caregiver, and I know

(19:45):
some of that stuff has reallyinspired you to get where you
are today, to kind of, I don'twant to get the spoiler alert,
but Neil quit his job. But goahead, Matt,

Natalie (19:56):
let's talk about the first instance of care because
you've had multiple bowels. Andit changed, actually, to the
trajectory, like, your motherknew this goes back to your
mother was right, yeah. She wasYeah. Let's talk about, like,
this happens, your grandfatherstarts getting dementia, and
what is, what's the familyconversation like? Let's, let's

(20:17):
get into, let's get, get backinto the personal and say, Okay,
how did we have thisconversation? You're in your
late 20s, 30s, early 30s at thispoint, what tell us about that,
and what had the planning beenfor that, for your grandparents
and that sort of thing,

Unknown (20:31):
planning close to minimal, you know, like, it's
not like something you kind ofand maybe some people plan for
but you know, kind ofunexpectedly happens to you. The
family conversation was, how arewe gonna manage the care, right?
Like, in that case, like,everybody's working. My mom was
working. So, you know, it waslike, Okay, let's get care help.
How do we keep him safe? Youknow, various times, how do we

(20:52):
take him to dialysisappointments? You know, like,
there was a lot of, like,coordination work, and we were
trying to kind of patch it alltogether and suddenly learn
altogether about, how do you gethelp? Who do you hire? How do
you vet all that stuff? Youknow, full transparency. And
part of the reason why I reallyam focused on why the system is
broken. A lot of times we justthought we were just having bad

(21:13):
luck, or we're doing it wrong.
We're not getting good help. Mymom ended up taking a lot of
time off work, like justunexpectedly missing work here
and there, then having to takebreaks and take leave. Oh yeah,
I got to the end. I mean,eventually she just left her
career and did it full timeherself, because it was so bad,
you know, which, like wethought, okay, why is this
happening? You know, is not, Idon't. You know, when you're in

(21:36):
this situation, you don't thinkthis must not be happening
everyone. Otherwise, everybodymust be quitting their you know,
work, so maybe we're just notfiguring out where the good care
is. But yeah, so there was likea real toll on that. And then I
would say the bigger thing fromthe whole observation experience
was it put so much strain andpressure on my mom through the
care journey that after hepassed, I think there was a long

(21:58):
period of PTSD, you know, forher to recover from that because
of just the combination of thesheer amount of work and the
sheer amount of second guessingand guilt of, like, could I have
done XYZ things better? So Ithink that that was, like, I
mean, obviously on me too, youknow, but I unfortunately didn't
have a lot of time to think,because shortly after that, my

(22:20):
wife became surreally ill, andthen it's like, directly hit me.

Natalie (22:26):
Oh, and when it hits you, isn't it's weird, because
it's you mentioned in theinformation that you sent us,
you were, like, almost thesecondary caregiver. And so it's
interesting that your mom wasthe primary. Is that, would you
say that was between she andyour dad. Like, well, one, let
me reverse, is your grandfathermaternal, or it was her dad, so

(22:48):
it was her dad, and so was it.
And so then it would have beenassumed, like, your dad, your
female, this is the naturalrole. And everybody just was,
like, okay, Best Supporting

Unknown (22:58):
Actress, yeah, in that case, there's two siblings.
Like, it's her and her oldersister, yeah. And I think it was
assumed, like, just from apersonality perspective, like my
mom is, like, way more of thecaring person. So it was kind of
assumed that way, you know,that, like, she would do it.

Natalie (23:15):
Oh, trust me, Neil, JJ and Emily are way more caring
than me. Like, I'm the fourthperson out of my mom would
probably ask for, and that's butI think this is important for
our listeners to hear. Justbecause you're the oldest
doesn't mean you'reautomatically nominated to be
the caregiver. Just because youit really leans into a number of

(23:38):
factors. It's but it's not asit's not as clean as a
diagnostic, yeah, as adiagnosis, if you think about
it, it's not that clean. So,like, it's about based on a
number of factors. Where do youlive? Who's got the personality?
What's the relationship like?
What's Can you even do it? Imean, if you really think about
it, what were some of the roles,if you don't mind, before we go
in to talk about your wife. Whatwere some of the roles that you

(24:01):
played, being really acaregiver, to the caregiver, not
only just to you, supportingyour grandfather, but even
supporting your mom, how

Unknown (24:09):
you and your sister?
Yeah, yeah. And thanks, thanksfor sharing that. You know, I
would say actually, in, like,reflecting on it, probably not
as much of an emotional supportrole, and more of, like,
outsourced helper or researcherrole, you know, because, like,
that's what I'm good at, youknow, I would say, you know,
like I'm based on my ownpersonality. I was like, okay,
what can I do, given the skillsand the energy that I have, and
what kind of things am I notgood at, or, like, maybe less

(24:33):
naturally good at? So yeah, Iplayed a role of, like, let me
take tasks off your and help youfigure things out, because I
like doing that and I'm good

Natalie (24:44):
because I'm doing it again. You've because here's the
thing, you felt successful, ifyou really think about it,
you've felt successful in doingthose pieces. And I can tell
you, Neil, we are absolutely thesame way. JJ plays to her skill
set. I played mine. And Emilyplays to hers. And we're just
fortunate. We always say we'refortunate that we there's three

(25:05):
of us, because we don't know howpeople do it with only one,

Unknown (25:08):
yeah, yeah, it's, I think it's very hard if you're
doing this by yourself. It isextremely hard,

Natalie (25:15):
even more with solo aging. So I don't have children,
and so I'm trying to basicallyget as many children nearby that
are my friends kids to be like,Hey, you're Aunt natties. Yeah,
gonna be really friendly whenshe's older. I mean, don't
ignore the part now you're

Unknown (25:29):
right. Building a community. I think it. I think
when you go through these kindof prices like that, it's like,
you know, the word community isoften thrown around in our
society, is like, a kind of athing. But I think, like, that's
really when it matters, youknow, like, Do you have a
community around you, whetherit's your family, whether it's
your kind of, like, adoptedfamily, in terms of, like, your
friends and people in yourneighborhood and things like
that, but like, a strongcommunity of, like, cohesive

(25:51):
bonds, you know, where peoplehave done things for each other,
I think it really matters whenthings like this happen. And I
think it's like sometimes peoplecruise through life under
appreciating the value of havinga strong community, whether it's
a community that they were, youknow, blood born into, or that
they created themselves. I thinkit's very

Natalie (26:05):
important Totally agree. So let's go in to you
notice. Neil, I talk, do all thetalking. JJ, just waiting for me
to take a breath. That's true,but let's so you have this
experience, and I appreciate yousharing that your mom would
basically, I mean you, what youshared is your mom struggled.
She was the primary caregiverfor your grandfather and that

(26:28):
you guys were, and sheultimately quit her job, which
is unfortunate, which is so notuncommon, and I would assume,
like you all, like so many ofus, spend well more than the
average, quote, unquote, $7,000a year in providing care,
because your mom quit in her jobalone. Just shows the income,
right there. You just, I

Unknown (26:49):
think that's that stuff is undercounted. You know, count
that, you know, the the lostincome, you know, it's like the
cost of care even is high.

Natalie (26:58):
Yeah, exactly so, so you have this experience, you're
moving along at the same time inyour career. So you get married
at some point, like you're, Imean, you're a whiz kid. I mean,
basically you're Doogie Howserof the finance. Yeah, that's
what I've decided. You're Doogiehow's the finance. And so life's
moving along. You get married,meet your wife, and then what

(27:20):
happens,

Unknown (27:21):
yes, got married. Yeah, my wife got married. And, you
know, we were married for, Ithink, around less than three
years at the time when shebecame severely ill. And, you
know, went through breastcancer, is triple negative, very
fast growing K factor, and,yeah, went through major series
of health issues, includingmultiple hospitalizations, a lot

(27:45):
of side effects from treatment,treatments that weren't working,
multiple surgeries at like, veryearly on, went through a severe
hospitalization that landed herultimately in the ICU in a
medical coma for Three weekswith like, bilateral pneumonia
with sepsis. So like, like, atone point, had, like, over 50%
probability of death. And, youknow, I so I was like, kind of

(28:08):
thrust into direct caregivingthrough that experience at the
time that I had achieved, like,the pinnacle of my career, you
know, where I'd been working mybutt off since my early 20s. And
by the time I was 35 I wasrunning a $250 million
investment fund, you know, withme as, like, the kind of the
main person that the investorshad invested with, and then I

(28:29):
had a team of people workingwith me. So, yeah, it was, like,
extremely, extremely sudden, andit was like, a tremendous amount
of pressure, where that workitself was very stressful. You
know, I was already working6070, plus hours a week on that,
and then I was thrust into theseemergent situations, managing my
wife's care of, oh, by the way,she's in a coma. You have to

(28:53):
make all the medical decisions.
And I'm like, basically justliving at the hospital for close
to a month. And I'm like, fullsabbatical, if, like, I'm not
doing work.

JJ (29:02):
Does everyone know? I know you're the head, but do have you
fully disclose, like, all ofthese health issues, or it's
like, no, you don't know.

Unknown (29:08):
I mean, I've, like, my team knows. My team knows to an
extent, but I'm like, I'm nottrying to scare them, you know,
because, like, this is all theirlivelihoods, you know. So I
don't want them to panic. Like,I got it under

Natalie (29:18):
control. You got a lot of pressure there, because you
just wrote, you just said, thisis their livelihoods, and I'm
the lead.

Unknown (29:25):
Yes, it's like, there's a lot of responsibility. Because
think about it, like, at thattime, okay, the like, a lot of
things in your life couldcollapse, right? Like, you've
built something that is paying alot of people's salaries, and
you have to disappear for amonth, which is, like, not easy
to do in, like, a relativelysmaller organization. So you

(29:46):
have to, like, haveresponsibility for, like, okay,
you know, these people need tomake sure they have a stability
of, like, a way to earn aliving. At the same time, your
wife is in a situation where shecannot make medical decisions,
and several medical decisions.
Had to be made on treatment, andyou are now suddenly, you know,
at an age of 35 legally, you arethe person deciding somebody

(30:07):
else's medical fate, and you'retrying to calculate and think
about what to do. And, like, Ididn't come from like, medical
background, so I was like, Well,if I do this and she survives,
or this and she doesn't survive,it's like, can you imagine,
like, the amount of stress,like, oh my god, that if you
make the wrong call, or you makeeven the right call and just
goes the wrong way, you willhave to live with that for the

(30:28):
rest of your life, you know? Andthat's like, somebody else's
life that you're accountablefor, and they didn't give you
any training. And the differentdoctors are, like, giving
different recommendations, youknow, I would ask many of them,
what would you do? And, youknow, one of them would say one
thing, and then the person atnight would say another thing.
And I was like, I mean, it'slike, really, if I don't know if
you guys ever been in thesesituations, it's like,
extremely, extremely stressful,because you don't know what the

(30:51):
right call is.

Natalie (30:53):
Well, and I'll say this, I know that you know
Jason. Most people know thatJason had had a neck cancer, but
what they don't know is 10 yearsago, he had back issues, and he
and it was, do we have a backsurgery that could basically
impact him in a very differentway, permanently, and because he
was 49 or do we not? And so wewent with three opinions,

(31:17):
because we thought three.
There's a reason bit boards haveodd numbers, I pray, made the
decision based on what did twoout of the three say. 66%
decided that this was the way togo. I'm gonna, I'm gonna pause
this for a second and take onemore break, and then we're gonna
keep on going so we'll be rightback.

Unknown (31:35):
Care forward is a technology platform that
connects volunteers withseniors, the disabled and those
with chronic or complex healthconditions, offering support,
like transportation, home visitsand more details
online@careforward.io

JJ (31:50):
All right, everybody, we are back here with Neil Shaha, and
we're talking about, well, we'retalking about decisions that can
alter someone else's life, thatyou have to live with the rest
of Your Life. Basically, yourwife has had multiple health
issues. She's been in thehospital. And tell me, tell me
we know that you're really not.
Tell you're you're sharing alittle bit at work, but not a
whole lot, because you don'twant to scare anybody. Tell me

(32:13):
how you move through thissituation, what it teaches you,
but also what you do with it.
Tell me about, about

Unknown (32:21):
that? Yeah, I think, I mean, I moved through it. I
think kind of like, best Icould, one step at a time, at
the moment of, like, I kind ofmanage and navigate the care,
but like, ultimately I ended uptaking, like, sabbatical, then
going back to work, thensabbatical, going back to work,
and like, ultimately, just madeit very difficult decision to
kind of like, wind down the fundbecause I felt like I could not

(32:42):
responsibly continue the work.
That was, like a very, verydifficult, drawn out decision.
You know, it was almost likeadmitting defeat. You know,
after, like, I've worked thathard to get to kind of like,
pinnacle of my career and haveearned the respect of a lot of,
like, friends, colleagues,people I've known, you know, for
a couple of decades, to thenjust like, make the difficult
decision to walk away was, like,very isolating and very sad, but

(33:04):
I thought that it would have abig impact on, like, my wife's
health outcome, because it waslike, touch and go for a while
on what would happen. Yeah, Ithink that the other kind of,
some of the other things, like,I learned during the process
was, like, it was veryisolating, like, as a middle
aged, like, not even middle age,I guess mid 30s. Man in New York
City, there was not a lot of,I'd say, not in a bad way, but

(33:25):
there wasn't as much empathy asI would have expected. I think
it's because of, like, the waysociety is a lot of people I
found a lot of like, young ormen in their 30s or 40s, kind of
maybe have a more I don't knowwhat the right word is, but more
old school way of thinking aboutcare, that, okay, that, Oh, why
are you doing that? You know?

(33:46):
Why isn't somebody else doingthat? So I

Natalie (33:47):
think they have, like they asked you, where her
parents at? Why aren't herparents helping you with this?
Yeah, I think some Yeah, exactlylike people could say you're
another woman that you couldfind to help. That sounds
sexist, but it's really true,because nobody questioned me
when I'm caring for Jason. Butif Jason were caring for me,
they'd be like, oh, and I knowJJ would probably be gonna step

(34:10):
in either way. She stepped ineither way. But should we find a
no, it's almost like, should wefind a woman?

Unknown (34:15):
Yeah, I think it's like, I think yeah, that kind of
stuff is like, maybe, maybe saidlike, like, they wouldn't say
that exactly to my face thatway, but it's implied. It's
implied. And then I think theother thing that was kind of
interesting also is like, from astage of life perspective,
typically at that stage, okay,for 35 like a lot of our
friends, and this is where Iwould say, give them the grace
that maybe it's not their fault.
Many of them are a phase in alife where a lot of my friends

(34:37):
had also recently gottenmarried, or maybe had been
married for a few years. Many ofthem were having children, and
we had gotten married, we didnot have children at that time.
So while their life is kind ofin this directory of, hey, I'm
entering a new phase of life, oflike, I'm going from, like many
of my male friends were, like,single male, to then marriage,
to then kids, and I'm the. Oneat the group dinner talking

(35:00):
about, oh, my wife's reallysick. Oh yeah, this treatment
didn't work. Oh yeah, I'm makingdecisions. It's almost like you
become kind of like the Debbiedowner,

Natalie (35:12):
oh, my god. Almost said Debbie Downer. I thought that's
gonna come across harsh, butit's true.

Unknown (35:17):
Yeah, it's a reality.
You know? It's like, Hey, Idon't have anything fun to
report. Somebody's like, Oh, Ijust had a kid. Oh, man, I'm
doing this thing. Oh, I'm doingthis thing. I'm like, Well, I've
now walked away from my career,and things are not going well,
health wise, and I'm superstressed out. So it's like, who
wants to hang out with me? Yeah,seriously. It's like, I can see
that. They're like, Oh, hey,this sucks, because all my

(35:37):
positive stuff in the group offive or six people. It's like,
okay, this person's only talkingabout the stress that they're
having. So I'd say give peoplethe benefit of the doubt. You
could see why there's, like, alittle bit of more of a
distance, you know, while peopleare very empathetic and
supportive, like tons of peoplesent us food, flowers, you know,
visited, you know, and checkedin on us, whatever, but there

(35:57):
was still that, like, a littlebit of unspoken thing, of, like,
look, I'm at a phase in my lifewhere things are looking up. I
don't want to hear all thisnegative stuff all the time. And
I get that, you know, I thinkthis is a big thing in, like,
human psychology. Of like,sometimes people just don't want
to hear about bad things, eventhough that's a reality of
everyone's life, whether ithappens to you at 35 or 70 or 50

(36:19):
or anywhere between. There'sgonna be difficult things that
happen in your life. But yeah,many times people have, like,
less appetite for, you know,tolerating that. So yeah, I
found it became, like, extremelyisolating, extremely, extremely
isolating. And then especiallywhen she had left her work, you
know, I had left my work, andthere was just like illness and

(36:39):
challenges to go through. It waslike a very difficult and lonely
time for a while.

Natalie (36:46):
So let me ask you this.
I thought you were gonna leanin, Jay for a second. I didn't
wanna step over top of you, likeI always do, kinda thinking
about, I appreciate theconversation that we just had
about you really gave peoplepermission to be able to kind of
step back how much of that wasyour own, your own stuff. In
saying respectfully, and this iswhere it comes back to reluctant

(37:10):
caregiver. I mean, truly. Imean, none of us want, let's be
really clear, none of us want tobe caregivers because we want
our original role. You wanted tobe a husband. You wanted to be a
grandson. You know what? I mean?
Like, it's not that we don'twant to do care, but we don't
want to be put in that rolebecause of what it really
ultimately means. And there's alot of loss of control, but
you're given a lot of like.
You've you've given you said outloud, probably what a lot of

(37:33):
people think, and they don'twant to say out loud. But how
much of that Are you sure youdidn't put any of what your own
like? Maybe I would feel thisway, or I assume they're feeling
this way, and nobody ever saidit. Do you know what I mean? How
much of that put on others tosay I'm going to pull myself
back some because I don't thinkthey want to hear it, because,
hell, I don't want to hear it. Imean, I tell that's what I did.

(37:56):
I had to, I didn't think anybodywant to hear because I'm
depressing? Well, good

Unknown (38:03):
question. I actually, okay, good question. I'll say
this actually, interestinglyenough, one thing I discovered
through that care journey, whichI guess maybe is like,
counterintuitive, I actuallylike being a caregiver. You
know, I like the act of givingcare, which is, like, very
surprising to me, because, like,up until that moment of life, I
view myself as, like, justhighly analytical person
sometimes, maybe not in tunewith my emotions and stuff like

(38:25):
that. But I like being acaregiver, you know. I like
helping somebody, you know,whether it's like a close family
member or even just somebodynot. I like the act of like
helping somebody who's sufferingor struggling. So the act of
care I enjoyed. And, I mean,that's saying that loosely,
there were a lot of times high,high stress, yeah, but, but I

(38:48):
like and find deep meaning inthe work, you know, whether it's
within family or for someoneelse. But I also, like, I would
say I'm attuned to otherpeople's like, feelings and kind
of the way they're interacting.
And I think that, like, yeah, Iwill talk about the stress of
it, and hey, this is whathappened. And I could just read

(39:10):
the room that it was kind oflike, no one would explicitly
say to your face, yeah. But itwas like reading the room that,
yeah, people just like, have alimited tolerance of hearing
about it when they're in acertain phase of life, you know?
So I think it was like, morelike, I don't think people and
but you're right. Like, maybeit's me misreading it, but I
could just tell that peoplewould be a little bit more

(39:32):
regarded if, like, I think,frankly, many of them would be
like, I don't know what to say,you know, because I think many
of them have not gone throughthat experience.

Natalie (39:40):
Yeah, I think that's part of the issue. And I don't
think, and not to imply it's oneperson's fault or the other. I
think there is a little I thinkpeople are sensitive on both
sides. I think people and Ithink about my past experiences,
like, when we've I've come upon,like, my aunt had cancer, and
like, Oh, that's terrible. I'mso sorry. And then, but as good
southerners, most people. Arelike, Oh, that's okay. No, it's

(40:01):
not okay. You just start to saythank you. Thank you for being
sorry for me. Thank you for forshowing empathy towards me. And
I think you're but I do thinkyou're right, because people are
in different phases of theirlife and it's hard, and then
they don't know what to say ordon't know what to do. Yes,
that's consistent. And then ascaregivers, we also have to give
permission to this is what Ineed from you, and there's a

(40:23):
vulnerability that is differentthan you may have experienced,
not you personally, but youlisteners may have experienced,
and it changes the dynamics ofthe relationship, because my
husband lost a lot of friendsduring his journey, and I know
that people that had supportedour mom initially, are not
around, yeah, and, and so itchanges relationships, and it is

(40:48):
stress of care and thesituation, and I think it's all
the things that's why it's socomplicated. It's messy.

Unknown (40:55):
Yeah, I agree. And I think, I think to that point
about changing relationships, Iactually think that some of the
things, what I realized, youknow, through this life journey,
is, and I'm not saying the badway. There's a lot of people who
are around in, like, more of afair weather relationship when
it's, like, fun and happy andkind of just like, things are
good on the up and up. And thenyou realize, like, who's really

(41:18):
in your corner when things gobad? And I kind of feel like,
okay, you know, had a fortuneof, like, maybe a life
trajectory up until that pointwhere it was just, like, fun and
upwards for like, and then yougo through this big, difficult
phase in your life, and then it,like, makes you really realize,
like, who's there through upsand downs. And I get it, it's
like, friends. Maybe theexpectation is very different,

(41:38):
but I think that was, like,really eye opening to me that
you need that down to see who'sreally real, and not just who's
like, you know, there for thegood

Natalie (41:46):
times, yeah, oh, that's, I mean, I already can
tell that's going to feel like aclip Jay, because it's the
truth. Who's going to be therefor real, who's going to be
through thick and thin. Andsometimes you have to just give
permission for people to exityour life. There will be people
in my life, and then there arepeople not, and that's okay,

Unknown (42:04):
yeah, yeah. Or you just know, maybe, and not even in,
like, let's say in a no judgmentway, or judgment free, whatever
you want to call it, then youjust recognize that's what it
is, that this person's nice, butit's just, this is just like,
fair weather friend and sure,let's, let's have fun. But no,
deep down, yeah, not count on,you know.

JJ (42:23):
So, Neil, I know that you're my neighbor, basically. So tell
me about somehow you havetransitioned. You left New York
City. So tell me how all of thisoccurred. Because you change,
you'd left your career verysuccessful. And some people may
say this man was crazy. First ofall, why would

Natalie (42:39):
he give up all that money? Because that's like, he's
successful. He's doing this.
He's living a great life. Tellme how

JJ (42:45):
you what, what all this meant to you, and how you made
this change in your life thatfulfilled your mom's prophecy.

Unknown (42:51):
Basically, yeah, yeah.
Thanks, yeah. I actually, Ithrew my wife's care journey,
you know? So I initially, likehad to, because it was just,
there's so much care to do. Andsorry, things beeping. There's
so much care responsibility andsuch a impact on the outcome
that I was like, if I do thecare myself, and I'm like, there
at all the oncology visits, I'mkind of like, there, thinking,
researching, maybe there will bea better probability of beating

(43:14):
the cancer. So, you know, end upkind of like, really, just going
all out and obsessing over it,you know, then, you know, knock
on wood, you know. And part ofthat whole journey was just
like, kind of coming back home,getting care support from
extended family. And then, youknow, actually, you know, she
had her final surgery here atDuke. And you know, then, you
know, after radiation, like, wasin remission, which was like,

(43:36):
awesome outcome after all thesedifficult years. And at that
point, you know, I saw I leftout of necessity, of like, the
immediate, like, emergentsituation, of like, have to
leave because that'll impact theoutcome. But then after, you
know, she had recovered, then Ispent a lot of time, like, soul
searching and thinking, Okay, Icould just go back into what I
was doing. And, you know, maynot be able to pick it up

(43:57):
exactly where I left it, butpretty quickly, kind of get back
there. But I'll say fullyhonestly, it was like, eye
opening life experience in away, of like, it made me second
guess what I had been doing withmy life previously. Like, I have
a lot of skills. I have, like, avery hard work ethic, you know,
and like, I have, like, brainpower that I can, like, dedicate
to something. And then I'drealize, like, the initial

(44:19):
reason for entering thatindustry was just because I came
from like, lower incomebackground. I was like, Okay,
how can I just quickly make abunch of money so I don't have
to, like, worry about financesfor myself or even for my
parents, you know, for theirretirement. But then you
realize, like, what's the pointbeyond a certain point? There's
no point. You know, it's like,I'm not a very materially
interested person. I don't have,like, big tastes or anything. I

(44:41):
don't like to buy expensivethings. So then it's like,
what's the point? You know, justbecause you're in something,
you're just kind of going downbecause of momentum, but, like,
you're not you. So, so I thinkwhen you have this traumatic
experience, at least for me, itleads to a lot of, like, soul
searching, if, like, one you'reface to face with your loved
ones mortality, but you're alsoface to face and makes you.
Think about your own mortality.
That's right, you know, like, ifI were to die next year, what

(45:05):
will I've spent my precious timeon Earth doing? I wouldn't. I
wouldn't at that point, Iwouldn't have been proud of
that. You know, it would havebeen like, okay, cool. I did
something. But that was like, areally, not best, and, you know,
best use of the talents and theenergy that I have. So that was,
like, really the catalyst of,like, okay, that combined with
I've been in so many caregiversupport groups and talked to so

(45:26):
many people that are dealingwith this situation, as bad as I
felt for myself of having towalk away from a career, I was
like, well, like, lot of peoplehave it way, way worse, you
know, of like, people havewalked away from careers where
they don't have a fallback, theydon't have savings, they're
taking care of their loved one,and then they're just gonna be
completely screwed on their ownafter that. So I think that
years of that journey, andtalking to so many people just

(45:49):
like, I think, yeah, it's like,been like, an awakening of,
like, just how bad the systemis. So yeah, it was, like, after
a lot of like, thinking it waslike, Okay, I want to, like,
dedicate my life's work tofixing this to the best that I
can of like, caregiving is verydifficult. It's the system is so
broken that I was like, Okay,let me just, like, put my energy

(46:09):
into that and just kind of

JJ (46:10):
go, your level of empathy is just amazing. Because you said
you were in these groups, thesecaregiving groups, first of all,
and you say, I see these peoplethat had it worse than I did.
And you think about that,

Natalie (46:20):
I would think that would be really hard, but I love
that you're just like, I thinkI'll just tackle, you know, an
entire system, industry

JJ (46:27):
problem,

Unknown (46:28):
right? Naive that.
Let's put it, do it together.
We're gonna

Natalie (46:33):
that is like, Neil, in another life, you were a social
worker. I'm gonna tell you, inanother life you were a social
worker. And I think your mom sawat a young age that you had
heart and a heart for otherpeople. And as symbolic, of
course, you've got a heart onyour Oh, yeah, yes. You have a
heart for other people, and notjust blood relatives. You

(46:55):
definitely have. And that isnot, not something that is
necessarily born in everyone.
And so you thought, I love that.
You said, I'm going to take thisgift that I've been given and
which is in that skill set, andI'm going to do something
different. And so, and did thatstart? So what started first was
it Kerry, because that's how Icame to know you. What started

(47:17):
first?

Unknown (47:19):
Yeah, that started kind of carry Aya, like, it was,
like, I was like, What can I do,given everything that I've seen
and experienced myself andeverything I'm seeing caregivers
go through, so initially, youknow, I kind of went through,
like, a lot of like, ideas oflike, Okay, where is there the
biggest impact you can make? Youknow, I think you guys are

(47:41):
right, like, there's, like,there's a, you know, looking
back, there is like, an amountof like, naive optimism that I
think sometimes is required.
Because, don't get me wrong, ithas not been easy. It is I got
in, I realized it's broken for areason, and like, I just
underestimated how uphill of thebattle it is. But sometimes, if
you don't have that naiveoptimism, you never get started,
you know, so, but yeah, I hadkind of, like, this naive

(48:03):
optimism, of like, you know, aseries of challenges that I'd
experienced, I'd seen otherpeople experienced, but I think
some of them being caregivers,having a hard time getting a
break. A lot of times, thecaregiver just needs an ability
to some somebody else to takethe burden off them so that they
can go do something forthemselves, whether it's they
have to go work for income, orwhether it's they have to take a

(48:26):
break to just spend time ontheir own. I felt like that was
like, kind of, given that Ididn't come from like a medical
background, the quickest thing Icould make an impact on was
finding a way for caregivers tokind of get that help, and given
that I'd navigated the entirecare system myself, of like,
everything from, like, gettinghelp through agencies
informally, finding caregivers,you know, actually had had

(48:48):
experience like, even hiringstudents, like, I'd kind of gone
through the whole thing, and I'dgone through a lot of people
that I've met over the years insupport groups, try every single
thing possible. I'd kind ofobserved that the lived
experience, that the best thingin that kind of underground
economy of care was peoplealready knew, finding students,

(49:09):
you know, finding really most ofmost of the time, it was like
contacting your local nursingschools professor and finding
students who are empathetic andwant to do this work, and then
managing it yourself, likeeverybody knew is like a Wildcat
secret, that that is some of thebest care, but it's a lot of
manual work for you to do. And Ithink almost to the person in
the you know, care economy, mostpeople knew the hiring care

(49:32):
through these agencies. And Idon't want to offend anyone, you
know, I appreciate people aredoing these and running these
businesses, but most people knewthat the agency based care. It
was just like, not great, butlike, they were like, that's the
best I got. I don't have thetime to manage all this myself.
So that was, like, really kindof the inspiration of, like,
starting carry out. It was like,I think there's a way to help
people solve this problem, and Ithink there's a way to do it,

(49:53):
both affordably and to do in ahigh quality way, mainly because
when you experience. Means lowquality care. You feel very
guilty, like if you go do yourjob because you left your mom,
dad, spouse, whoever, with kindof a subpar caregiver, you carry
that guilt with you to your job,and you think about it all day,

(50:13):
and you may, and many peoplehave to learn repressing
mechanisms because you don'thave a choice. You know, I think
that's like modern life we livein. But I think that has, like,
a second order impact on theperson they know, you know, they
know and they feel bad. Youknow, they feel bad that I wish
I could have done better, butwhat choice to have? So I really
wanted to fix that, because Ithink that that guilt has a lot

(50:33):
of,

Natalie (50:36):
well, guilt is also then the next step is isolation
and and holding those feelingsin. And we know the impact that
holding in negative thoughts,feelings, emotions, and the
impact on your body and youroverall health and wellness that
that can have on you. And so tonot to I always say, I have to
get the negative out. I can'thold that in and carry it and

(50:57):
it's too heavy, and you don'thave to carry it. So you started
carry Ya, ya, which is, this ishow I found you. And I thought
it was really cool. And then youdecided, no, I think I'll do
some other things too, becauseit not like that wasn't
successful enough. But let's goahead and let's go to the next
level.

Unknown (51:15):
Well, okay, so yeah, so sorry, I totally glossed over
what Carrie is. So basically, soI started carrying, which is
like a social impact project,which was basically, how do we
connect people with greatcaregivers at, like, the most
logically affordable rates, sowe run completely for free,
like, carry out charges, nofees, markups, anything like
that. And initially it was just,like funding it myself. And it
was like, we built thistechnology system similar to,

(51:37):
like, Uber or Airbnb or whateveryou want to call it. And we
said, If anyone is caring for afamily member, you can go to the
site and you will get wonderfulhealthcare students near you. So
we started in our area, inRaleigh, Durham, so at like Duke
and UNC Chapel Hill and NCState. And you know, pre med
students, nursing students play

Natalie (51:55):
sport. Let's be clear, yes, UNC or North Carolina has
and Virginia is honestly anotherone has good, a good college
system that allows for you topull interns and students that
are in healthcare track. So Ithink, I think that's an
important component to it. Ithink it'd be harder in some of
your more rural states.

Unknown (52:16):
Yes, 100% agree. The South, you know, a lot of the
South has a disproportionatenumber of, you know, college
students, and alsodisproportionate number of older
adults. So, you know, that waskind of like a really, like
realization. So we started that,and, yeah, we now running carry
out for about three years. Andit started from, like a local
Raleigh Durham thing with like acouple 100 students at Dugan UNC

(52:37):
to eventually got to like 1000to eventually, you know, got to
like, 5000 and now it's spreadnationally. We have now, I think
at last count, like 44,000students across. We're at over
35 universities. It's like,really cool. It's like,

Natalie (52:52):
thing Neil, it's little thing,

Unknown (52:56):
yeah, it's like, blown up, and it's like, really cool.
Because, like, it's, it's inmost markets, it's the most
affordable care option by like30 to 40% you know, in areas
like Boston, you know, the localcare companies are charging 42
to $45 an hour. Yeah, and, youknow, and you know, no offense
anyone, but most of thecaregivers are not doing a great

(53:17):
job in those situations becausethey're not getting paid most
that the interesting break inthe care economy is that the
caregiver does like 99.9% of thehard work, right? They're
actually on the job doing it thecare matching organization,
which would be the company, isdoing like 1% maybe at best, of
the work, which is like upfrontmarketing and sales and
administrative work. But theeconomic value that these

(53:39):
companies are capturing is overhalf. So in Boston, the care
company is charging 45 andcapturing 25 to 30 of that, and
then paying the care worker liketeams per hour. That's why the
care sucks, and that's why thefamily pays an arm and a leg. So
what Carrie I does is we willconnect you with pre med student
at Harvard, nursing student atTufts, whoever you know kind of

(54:02):
is available for 20 bucks anhour, and then you pay, and the
student gets and we fund thewhole thing off grants and
social impact funders, and that,I think, is like, a big change
in the care economy, because thecaregivers are super happy,
motivated. They're getting paidreasonably well. The family is,
like, able to afford a lot ofcare. So a lot of people we
serve could not afford to carein a traditional way. And, yeah,

(54:23):
the impact is scaling now aroundthe country with like, a pretty
lean team, and I think that'skind of like a cool you know,
both sides win

Natalie (54:30):
well. And so I'm gonna, I'm gonna stop us for a second,
because we're, I know we're atthe end of our time, and we're
gonna end up going a little bitlonger. So if folks want the
extended version of this?
Definitely go to our website andyou can grab the edition. So,
because we're going to keepgoing a little bit longer. So
the other because, again, if youdon't know Kerry Yahya and I

(54:51):
know for our listeners on UKhealth radio, this is a United
States based but this is aconcept that I'm sure Neil was
like, oh. People, it's anywherekind of idea you can do this.
And so I think my answer is, beinspired. And so because that's

Unknown (55:08):
what might extend the UK we have, BBC is going to do a
story on us there. I'm actually,I'm doing an interview with BBC
like next week. So yeah, coming

JJ (55:15):
to the UK soon, we'll see.

Unknown (55:17):
Fingers crossed, please.

Natalie (55:19):
Are you kidding me?
It's not even a question, I feellike I'm like, I need to get you
with a friend of mine. Aditya,if you're not listening to this,
Adi is about to be your friend.
Neil and so, powerhouse, 18 yearold, and so, um, so I want to go
in, and I want to spend the lasthandful of minimum minutes that
we have, because you also,normally, we don't promote,

(55:39):
like, lots of things like this,because we really talk about
your experience, but what you'vedone with this is so different.
And I think there's things thatare such a give back. And again,
your mother was right, but youhave this book called insured to
death, how health insurancescrews over Americans, which
cracks me up. I just I love thatright here. I love that there's

(56:01):
a gun on it, because nothingsays, Nothing says, oh, that's,
that's pretty dicey, yeah.

Unknown (56:05):
Well, see, see the denial letter has the shadow of
a gun, because that's what Ithink the insurance companies
are doing when they denycritical care. They are
basically dooming you, you know?
And I think that's like, that'snot, you know, they've lost
sight of their mission

Natalie (56:17):
well. And I think so, here's my question, because I
know that you have what is thenext step, because I know you're
using AI, and I know you havelike ideas of like, how to help
other caregivers navigate. Solet's talk about strategies to
navigate the system effectivelyso you don't feel like,

(56:37):
respectfully you've been given adeath sentence.

Unknown (56:40):
Yes, so I think that also is from lived experience.
In managing my wife's care forseveral years, there were so
many critical things we weredenied. You know, whether it's
therapeutics, whether it'shospitalization, bills after
that, whether it's surgery andsurgery related bills, these
were things that were supposedto be covered by insurers. And I
think that's a critical thingthat's happening across America,

(57:02):
that the health insurancecompanies are breaking the
social contract now, whether ornot legal contracts. I mean,
they can all play games andfigure out ways around it, but
they're breaking the socialcontract that if you have health
insurance and you've been payinginto it for 1015, 20 years, and
then something bad happens toyou. That is the time you need
the funding, not you need extrastress because things are being
denied. So I experienced thissignificantly during my wife's

(57:25):
multi years cancer care, and Iwas very frustrated. I was in a
fortunate enough position whereI could just punt on the
frustration and pay everythingout of savings and deal with the
bills later. But not everyone isin that situation, right? And
even even in that situation, itcreated a tremendous amount of
stress when I, you know, shouldbe focusing on care, and when
she should be fighting illness.
There were various times duringher own chemotherapy, though,

(57:46):
she was spending hours and hourson the phone, fighting bills.
And I think that's like insane,you know. And I've observed so
many people dealing with this,and I think that what pissed me
off is that many people aredealing with this who don't have
savings, and then they areforegoing critically needed
care, which is then making theirhealth worse. So I observed
this, but I thought, Okay, thisis just happening this group of
people that I know, but thenover time, in running Carrie, I

(58:09):
see this is happening to a tonof older people as Medicare
Advantage is now the prevailingway that most people are getting
Medicare, and it's private forprofit plans and so many family
caregivers are drowning indenials by Ma plans for their
mom or dad. So I wrote the bookto kind of research and bring
awareness to it, but I also likeused a lot of our team's time

(58:29):
and energy to build AI tools tohelp people fight back. Because
what I observed is, when peopleget claims denied, 99% of people
don't fight back. They'reintimidated, they don't know how
to do research and all that, butof the 1% that do bother to
fight back, half the time youwin. So I was like, well, the
critical problem is we need tomake it easier for people to

(58:50):
fight back, to create wellstructured appeals, you know,
with medical evidence. So webuilt an AI system where people
kind of upload their coverage,policy, their denial letter,
their health records, and itwill then go ping a bunch of
research journals and billingcode databases and figure out
any fixes to why, almost likehaving a lawyer and a doctor in

(59:10):
your court spending 10 hours onyour case, but do it in two
minutes and for free. And thatwas like, really the whole
inspiration. And we were like,how can we help people fight
this broken system? And policeto say, we've been now running
it for a few months, and over70% of people are winning, which
is amazing. And yeah, we'vegotten some like impact funding
to kind of accelerate, whichwe'll be announcing over the

(59:31):
next couple weeks. But it'slike, yeah, it's a free tool for
everyone to use. Where can youfind the tool? Sure, it's called
counterforce health.org so youknow, C, O, U, N, T, E R, force
health.org, and, yeah, you canjust kind of set up a free
account, and, you know, use itas much as like. The most
pleasant surprise is clinics areusing it, you know. So it's not
just patients that are

Natalie (59:52):
pissed. I can see clinicians being able to use it,
practitioners who are trying toget

Unknown (59:56):
doctors, nurses, social workers, they are so sick of
this health insurance system.
Them, you know?

Natalie (01:00:00):
And here's the thing though, Neil, is that we have to
remember, because, I mean, I'vegot my friends in the health
plans, so and so, and I alsoknow who those people are, in
the sense of, they're humanbeings and they want what's
well. But you know, it seemsinteresting that you'd use AI to
fight AI, because the healthplans are using AI, are
instituting and integrating AIinto the decision making process

(01:00:23):
for claims, and then you get itonce you start getting denials,
that's when you start gettingpeer to peers with like
healthcare professionals, like aphysician. And so that's But
it's interesting that you'vegone that direction, which it
makes perfect sense, because ifI'm a person, I'm going to ask
this question, because this wegot to get into sister
questions, we're way over time.
But, yeah, okay, so, but I willsay, if I'm a person, will my

(01:00:44):
information that I upload beremain secure, and will it be
used? How does the machinelearning? Because people are
going to be like, well, that'smy protected health information.
And how is that information use,is it sold? I mean, and PR to be
able to back in and get,basically take all my money from

(01:01:05):
my bank account?

Unknown (01:01:07):
No, no. Great question.
Yeah. So the information isfully secure. It's not sold to
anyone. We run the whole thingoff grants, an interesting kind
of, like, way we've built asystem for clinics and like,
full HIPAA compliance is thatyou get an option to you can de
identify all the information onyour machine so that is scrubbed
and then sent into the serverwithout your name and any

(01:01:28):
identifying patient information.
Or you can leave it in, youknow, because it then, if you de
identified, it creates theburden of you have to manually
add it back in when you get theletter. Otherwise you don't. But
yeah, it's fully at your option,wow. And you know, from a
clinic's perspective, theclinics have, like, full HIPAA
compliance, you know, where noinformation is transferred. And
then for people who want, like,an even greater one, we're happy

(01:01:50):
to, like, sign businessassociate agreements, you know,
to maintain HIPAA compliance anddo it for hospitals, but we're
helping, like, we kind ofdesigned it with multiple tiers
of like, if you're, like, justan individual patient, you can
use it however you need. If youneed, if you want to go for
convenience, versus, like, fulldata privacy for clinics also.
And then we're like, designing abetter system for rural
hospitals, because, believe itor not, rural hospitals are

(01:02:11):
reaching out to us, and they'relike, I'm drowning in this
stuff. So can you guys help? SoI think there's a way, you know,
to your point about AI, I thinkit's like part of the premise of
my book is that the insurers,you could use a charge word like
weaponized, which I wouldprefer, but used AI if you want
to call it, the insurers used AIfirst and used it and abused it
for years, and individualpeople, small clinics, rural

(01:02:34):
hospitals, have to do the returnmanually. So if one person is
taking one second algorithm todeny something, and you have to
take eight hours of research towrite back, yep, most people
just fatigue didn't give up. Andas you see, insurance then will
make a lot of profit off that.
So yeah, I thought that you hadto democratize access to these
AI tools so that it can be kindof a fair

Natalie (01:02:54):
fight. Wow. This has been, you know, I'm going to
tell you, this has been the mostinteresting conversation. I'm
going to give you one question,Jay, because you got one sister
question,

JJ (01:03:03):
okay, what? First of all, thank you for making everything
to the caregivers at no charge.
We have a big heart forcaregivers, and they don't have
a lot of extra funds. First ofall, that was my first thing. I
absolutely love that you couldprobably wear all about that
first so question, one thingthat you that big, overwhelming
goal that you want to see happenfor the insurance

Natalie (01:03:26):
for the healthcare industry, what does the future
look like? Oh, yeah,

JJ (01:03:28):
like. What do you want to see? What is the one healthcare
for? For healthcare in general,what do you want to see?

Unknown (01:03:34):
Okay, yeah, for healthcare in general. I think
my maybe one overarchingphilosophical goal is the
recognition the family caregiveras the largest healthcare
workforce in the country, that Ithink that people who are
caregiving do not get therespect they deserve, like they
are doing literally frontline.
They are the frontline doctorsand nurses in millions of homes
across America. That's partlywhy I wear scrubs like whether

(01:03:54):
it's to inspire the students orto inspire the family
caregivers, that this isAmerica's healthcare workforce.
It's 63 million people, bylatest count from AARP, that
they are doing American healthcare, and they're keeping not
just the health care systemafloat, but they we, all of us
right, like we are keeping thesociety afloat. And I think that
caregivers would be behooved tobe better supported. You know,

(01:04:15):
like, think about how much moneyour healthcare our healthcare
system is, $5 trillion economy,like the amount of money we're
paying for drugs, the amount ofmoney we're paying to hospitals,
the amount of money that theMedicare Advantage plans and
health insurance plans aremaking a profit, and what are
the family caregivers getting?
Absolutely nothing. You know. Ithink it's like unbelievable,
like, unfairness in the systemthat you know, if somebody in

(01:04:37):
your family is sick, you don'tget anything. You know, like
they pay 32,000 bucks a year toBiogen for this dementia drug,
why isn't? Why isn't $32,000available to the family to
decide, do I want to take thedrug, or do I want to pay for
care, whether it's to pay forexternal care, or the family
member to get paid if they haveto quit their job. So I think
that that a big overarchingchange would be like that the

(01:04:59):
meal. Million so people who are,like, the actual hidden
healthcare workforce get therecognition and support they
deserve, and get, like, thefinancial support they serve.

Natalie (01:05:07):
Oh, I'm gonna tell you, like we could just go on and on
and on. This has been sofantastic on a direct level, on
sharing your personal story, aswell as showing you know, how
can you go and change a system.
And I'm going to tell you, forthose of you who are listening,
if you feel overwhelmed and thatyou feel like, who am I? I'm one

(01:05:27):
person. I can't do it. Neil justsaid, Yes, you can. And there's
more of you out there, and alongwith these sisters and Neil, and
there's so many great people outthere and who are really trying
to make an impact. It's amazingwhen we all get together,
because you really can makesignificant change. Now I'm
going to ask you the absolutelast question. Okay, absolutely.

(01:05:48):
This is the flippant question ofthe entire conversation, because
we've been super serious. Butwhat I don't know, when you have
free time, because I feel like,oh, look, Neil works more than
me, but in your free time, whatdo you do? Just for you guilty
pleasure, what's the

Unknown (01:06:09):
Yeah, for you, my guilty I love to read. I like, I
know that sounds cheesy, but Ilove to read random stuff. Like,
I love to read books about allkinds of like, you know, like
neuroscience, of like, how thebrain works, where is
consciousness? I love to read alot of, like, philosophy books.
I love to read a lot aboutancient history, you know, kind

(01:06:32):
of, what were cultures like inthe past? Yeah, I just like, I
love to read any kind of random,yeah. So if you guys have any
book recommendations, let meknow.

JJ (01:06:41):
Yeah, he's a sponge. Yeah, I'm going to

Natalie (01:06:42):
send you some book recommendations, because from
the psych side, but it's allneuroscience. And so I think
it's things that it's reallyabout relationship and
connection, and how do we comemore together? And and you're
really demonstrating how you canmake technology work to help
humankind. And so I love that. Ilove that so Jay, you want to

(01:07:02):
close?

JJ (01:07:03):
Natalie, Neil, thank you guys so much and everybody else,
all our listeners, until weconfess again, we will see you
next time. Bye, bye.

Natalie (01:07:14):
Well, friends, that's a wrap on this week's confession
again. Thank you so much forlistening. But before you go,
please take a moment to leave usa review and tell your friends
about the confessions podcast.
Don't forget to visit ourwebsite to sign up for our
newsletter. You'll also find avideo recording of all of our
episodes on the confessionswebsite and our YouTube channel.

(01:07:35):
Don't worry, all the details

Unknown (01:07:39):
are included in the show notes below. We'll see you
next Tuesday, when we cometogether to confess again. Till
then, take care of you. Okay,let's

Natalie (01:07:51):
talk disclaimers. You may be surprised to find out,
but we are not medicalprofessionals and are not
providing any medical advice. Ifyou have any medical questions,
we recommend that you talk witha medical professional of your
choice. As always, my sistersand I, at Confessions of a
reluctant caregiver, have takencare in selecting speakers, but

(01:08:14):
the opinions of our speakers aretheirs alone. The views and
opinions stated in this podcastare solely those of the
contributors and not necessarilythose of our distributors or
hosting company. This podcast iscopyrighted, and no part can be
reproduced without the expresswritten consent of the
sisterhood of care LLC, thankyou for listening to the

(01:08:37):
confessions of our reluctantcaregiver podcast.

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