October 21, 2025 • 61 mins
This week’s episode focuses on Christopher “Chris” Schuler—his journey as a son, father, and most notably, a devoted caregiver. Chris, adopted from Colombia and raised in a loving, close-knit family in New York, reflects deeply on identity, belonging, and the power of chosen family. His parents’ move to Rhode Island marked a period of even stronger family bonds, which would later prove invaluable when his father was diagnosed with glioblastoma, an aggressive form of brain cancer. The diagnosis and subsequent caregiving experience were transformative for Chris: he describes the initial shock, the emotional toll of shifting immediately into crisis mode, and the unwavering determination to care for his father, drawing strength from childhood lessons of love, attachment, and resilience.
Throughout his father's illness, Chris balanced being a parent himself, maintaining his job, and providing near-round-the-clock care. He candidly shares the physical and mental challenges of caregiving, including the toll on his own health and the burnout that caregivers often experience. Yet, amidst the difficulty, he found meaning by staying present, bringing humor to dark moments, and cherishing precious time with loved ones. The experience has forever changed Chris—today, he proudly claims his identity as “Dad,” guided by his father’s legacy of love and laughter, and is committed to using his voice to support and advocate for other caregivers navigating similar journeys.
About Chris:
Chris is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with biotech’s and patient advocacy organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He spent eighteen years as a successful philanthropic facilitator, having raised millions for a variety of causes. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. Chris continues as his Dad's caregiver — caregiver to his life, legacy and memory.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:03):
Hey guys, it's your favorite sisters with the
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate, beinspired. Lead with helpful tips
and resources, and, of course,laugh. Now let's get to today's
confession. Look, Jay, we cameright in mouth stretching.
JJ (00:30):
I wonder, I wonder if, if that like you burn calories when
you do that. I don't
Natalie (00:38):
know, it's almost like but, you know, musicians sing
before they start like Mommy,mommy, mom. That's my way of
singing this morning and then.
But you know, do otherpodcasters open their mouth
closed like to get their jawsready for some chat? Yeah, I
know right. How many people, howmany podcasters out there just
(00:58):
doing I
Unknown (01:02):
really should watch the video. Natalie and I do a Malva.
Natalie (01:06):
Yeah, we look actually, I feel like we look like a T
Rex.
Unknown (01:11):
Hey, guess what?
Natalie, hey, we have a guest.
Natalie (01:16):
We should do a caregiving podcast. What a novel
idea.
JJ (01:18):
Go ahead. Tell us just something special about this
guest. You want me to do myvoice?
Natalie (01:23):
Yes, you can. Boy, it's always like we've had a bunch of
guys on in the last recording. Ilove
JJ (01:29):
that I do too, because I feel like they're so, you know,
there's they're sounderrepresented, and I think
it's so rare, that they willraise their hand and say, Hey,
I'm a caregiver too. And it's,it's fantastic that we're
getting so many to come out andspeak, because once one does,
their voice is just so pervasivein the caregiving crowd. So
(01:50):
thank you, Kristen. That was hisbreaking out like it's a Chris.
Well, let me tell you a littlebit about Chris Schuler. That's
who we have with us today. SoKristen Schuler is the primary
caregiver to his late dad, whowas diagnosed with glioblastoma
in July 2021 now I say isbecause today, Kristen says his
(02:11):
caregiving continues for hisfather's legacy and his memory.
You'll learn Kristen is a fierceadvocate driven by his father's
laughter and love and adiagnosis that made their entire
world stop spinning. And when hesaid that, Ned, I really felt
like that was so much like mom'sdiagnosis. I never really
thought about it like that, butyour world stops. What Kristen
(02:34):
learned during their previoustime together. He's here to
share with us today, and there'sa lot he learned. So Chris, I'm
so excited to have you here withus today.
Unknown (02:44):
Thank you so much. JJ, Thanks, Natalie, that
introduction almost brought meto tears. So let's we're all
starting on a good note here.
Well, I'll get the Kleenex out
Natalie (02:54):
exactly, exactly, well.
And you know, I think it's soimportant you have such a unique
story. But that's the beauty ofcaregiving is that every story
is a little bit different, andthere's differences for the
reason who the person you'recaring for, what the illness is,
or what the reason forcaregiving is, but it's all
about what really connects us ascaregivers is that shared
(03:15):
experience of care, and how doWe take the lessons learned in
each of our individual journeys,and then, like, put them
together to have this amazingresource to say, this is what I
did. And so, you know, peoplewill try it and say that worked
for me. Oh my gosh, thank you.
That was the that idea I waslooking for. And so that's why I
(03:37):
love this. And I love Kristenthat you're coming on to
represent the male population ofcaregivers, because 40% that's
what they've got on thestatistics right now. And we
know there's a bunch more. Weknow there's a bunch more. So
Kristen, we always start offlike, I say, I say this every
time we start from thebeginning, you were born, but
kind of, give us yourbackground, give us the kind of
(03:59):
set the stage, and we'll workour way up to care, but don't go
too fast. Give us a good story,
Unknown (04:06):
sure, sure. No. Thank you so much. And you'll hear my
dog either barking or jinglinghere in the background. But, and
you know the stats, I did notknow that 40% of caregivers are
men, and I'm surprised. I'malmost surprised in a way, to
hear that, yeah. And so my storybegan, you know, we all think
(04:26):
we're special, we're unique, andI guess we can make the
arguments that we are. And mybeginning started in South
America. I am originally adoptedfrom Colombia, and so my last
name doesn't usually match whatpeople might think I look like,
which is a fascinatingdiscussion and exercise and
(04:48):
identity. Who are we reallyright? Am I? Chris Schuler from
there, who tans really well inthe summer, and we'll never
break five, four or am I? Or amI? Chris. Schuler, with the
German last name, who whoseparents have ancestry in Ireland
and Germany and England. And soI've always found identity be a
(05:10):
fascinating part of my life,growing up and and some people
will ask, well, when did youfind out you were adopted? Well,
I never really found out. I justknew it was. It was something I
knew from from before I hadmemory. It was something that
was just known and and so Icounted myself almost as a as
(05:33):
somebody in a little differentbut, but a very I had a special
opportunity, and I knew thatfrom childhood, I just knew that
I was chosen like I was. I waspicked to be my mom and dad's
son, which is really a beautifulthing to grow up with. You know,
as children, we absorb so much,right? And so that was what I
(05:56):
absorbed. That was the firstthing I absorbed as a child, was
love and I was, I was theirpick, which was a great way
Natalie (06:04):
we all love to be chosen that is such. You know,
working in the foster caresystem, there's so many children
who feel that they're unwantedbecause, for whatever reason,
their parents aren't able tocare for them. But to kind of
shift it to I got picked, and Iwas so loved and wanted that I
was I was I was it was it is aprivilege. It is a privilege to
(06:27):
get to work with children.
Always say that to my fellowcolleagues, and you know, I
think it is a privilege, andit's a different set of
circumstances. But I love that.
I love that angle, because Ithink it, I think it's very
true. I think it's true, and Ithink it's healthy, because we,
(06:48):
all, every one of us in ourbasic elements, want to be
attached to someone. We want tofeel connected. We want to feel
like we belong. And I soundslike that, that belonging, that
sense of belonging, reallyendeared you to your parents
even more like, you know. Thinkabout it in the future. How did
(07:09):
this impact this culture andthis multiculture? You've got
multiple backgrounds, honoredthat recognized and honored
that, you know, hey, this iswhat we believe and and this is
who my identity is. I'm reallyglad, I'm glad we went there
first, because that's that'sinteresting. Now everybody's
gonna be like, I want to
Unknown (07:30):
see YouTube. Yeah, yeah. Well, yeah, yeah. That's
my that's my foundation. Infact, there's, there's a frame I
have on my shelf here in myoffice, and it has been in my
room since I was born, and I'vecarried it with me everywhere.
And it starts left a poem. It'sabout our adopted child, but it
begins saying, We you are thechild. You are not the child of
(07:50):
our bodies. You are the child ofour hearts. And those words have
always been inscribed over myhead for a lifetime. And when I
became a dad, fast forwardingway far into this story. But
when I became a dad, it was asurreal experience, because I
hadn't thought I have I hadn'tthought much about being
adopted, because that thatreally doesn't define me. And
(08:12):
but when my kids were born, andI looked my son in the eyes and
and he was the first human thatI have known in my life, that is
a part of my body. He's my wehave the same blood that was so
surreal and a reallyoverwhelming. It was an
emotionally overwhelming feelingthat I didn't expect to happen
(08:35):
moments after he was born.
Natalie (08:38):
I love that. I love that. Yeah, so you So you grew
up, and you have great parents,and you're having because you're
an only child. Too Correct.
Unknown (08:46):
I'm an only child because it was so dangerous to
adopt a child from Columbia inthe mid 80s that my parents, who
were both blue collar NewYorkers, they had never left the
country, and they got a phonecall that said, your baby's
ready, and they hopped a flight,went down there. They brought
genes, they brought stereoequipment so that they could
(09:09):
barter to get out of thecountry. They were prepared. The
adoption agency actuallyexplained to them that you will
have to barter to get back out.
And when they landed, theirpassports were confiscated, and
they did, in fact, have tobarter to leave the country. And
so when they got back and later,years later, when I asked, Why
don't I have a brother orsister, my mom would always
laugh and say, we didn't knowwhat the hell we were doing. As
(09:30):
two idiots from New York withwith high school graduate
degrees, we had no clue what wewere getting ourselves into.
When we got out alive, we werelike, well, let's, let's just
stick here. We don't even wantto leave our kid. We're good,
we're good,we're good jeans, we're good
jeans, man, let's not go back.
Natalie (09:50):
You know, I love that and so, so life then, you know,
I'm assuming normal childhoodgrowing up, went to went to
school, graduated high school,went. On go to college. Keep
going, keep walking.
Unknown (10:03):
Yeah, yeah. I mean, lucky to grow up with a with a
wonderful family surrounded bylove and laughter and and went
to, you know, grew up on LongIsland, New York, which is a
which is a big part of myidentity, and probably my accent
and my attitude, most likely,and and so grew up there and had
a great, great childhood. My andmy parents, like I said, blue
(10:23):
collar. My mom was a schoolsecretary. My dad worked in a
sewage treatment plant, a verydangerous line of work that I
recognized early in life. Andand I was lucky to have an
opportunity to go to college,and, and they had not been to
college, so that was a big deal.
And I went to college in RhodeIsland, where I met my future
wife. Within minutes of movingin, I meet the girl in the dorm
(10:46):
next to me, in the dorm roomnext to mine, and fast forward,
she becomes my wife. And so wemake that's like she's the one
Natalie (10:58):
you love, that I love.
How fate just kind of our I say,God, God puts you right next to
where you need to be. And so Ilove that. And so, so going
through school, found the loveof your life. You get married,
and kids come next, I'massuming, yeah, you
Unknown (11:14):
know, I thought she would love to live in New York.
I was dead wrong. She was aRhode Islander at heart, and so
she was never going to leave thestate and and so we made our
life here, and I got into thenonprofit sector in youth
development, then just startedworking. You know, you My mom
always told me, growing up, thisis what you do in this order,
right? You go to school, thenthen you get married. You do
(11:36):
not, don't have kids before youget married. That was a bird.
Natalie (11:38):
That was That is our family as well. Sorry to anybody
who went out of order. But, Imean, my mother always said a
baby some wedding story comesbefore baby story on TLC, yes,
there's a reason. Amen.
Unknown (11:49):
It add is absolutely true. And so I just, we just
began our lives together, and mywife became a teacher and and we
eventually found a house, wemoved in. We life was just life
was just moving along. We weredoing the things that we were
supposed to do right, the thingsI think that we're all meant to
do. And I convinced my mom anddad to to move out of Long
(12:11):
Island, New York and move northto Rhode Island. Nobody does
that. By the way, no ask any NewYorker or any New Englander,
they don't go north. They gosouth because South makes sense,
South is cheaper.
Natalie (12:24):
South is warmer.
Unknown (12:28):
Is warm. It's beautiful. It's absolutely
beautiful. So we buy this housein a nice little neighborhood
here in Rhode Island, and myparents are looking at places in
in Florida and South Carolina.
They're talking aboutretirement, might they were
lucky to have both been civilservants so they could retire at
55 and we're looking at houses.
And my dad, he'd love to be onlike the real realtor real
(12:50):
estate websites, right? And sohe finds this house about six
houses down the street frommine, and it's beat up. It is
old. It's been abandoned forfive years, but it's on a lake.
It's on a beautiful lake. Now wecouldn't afford house on the
water, so we're not on the lake.
But he saw this thing, and hethey made a visit up here, and
that was it. It was meant to be.
(13:13):
So they retired here, six hoursup
Natalie (13:16):
north, with more snow,
Unknown (13:18):
more snow cold. And he hated the cold.
JJ (13:22):
So I do have a question. So you know, in your bio, you
wrote, I was surrounded by loveand laughter. My dad was my best
friend. You wrote all this inyour bio, and your parents are
moving like, six houses down,and I lived really close to my
parents for quite a while. Itwasn't a bad experience.
Actually, I always say whenthere was buy one, free at the
store. I was the free. My momwas the buy one. It worked
(13:44):
really well for me for so long,when they moved how? What was
your first feeling about that?
Was it like, holy crap, mom anddad are following me? Or was it
pretty comforting to know, hey,we're gonna have this family
where, yeah, we're gonna sharedinner, where mom and dad are
retiring. I think this is thisis our life. It's going to be
good. What was your firstfeeling with that?
Unknown (14:04):
Oh, I was thrilled. I was absolutely thrilled because
I grew up in a house where mygrandmother lived above us and
in the same house, and my dadgrew up around the corner from
his cousins, six houses aroundthe corner, and so family and
closeness. Nobody can make theargument that my family is not
(14:25):
close. We are incredibly notjust our, our our small group of
family, but our, our extendedfamily. We are all just very
close. So when they made thismove, it was, it was it was just
wonderful. I was so happy. I
Natalie (14:41):
love that. It's a win for you, because, you know, and
I hear you saying that whatyou've got is a multi
generational household, andpeople who have grown up around
family were the JJ and I are theonly ones who moved away. And
Audi was awful. We were terriblepeople. We were terrible people.
What's wrong with you? Whydon't. You like Tennessee, why
(15:01):
don't you do this? And so, butall of our cousins, everybody,
everybody lives within, I don'tknow, 1520, mile radius, and,
and, and we grew up with ourcousins, and I, I miss that for
others, I miss that familyconnection, the extended family.
And because a lot of people, Ithink there are people who worry
(15:23):
about, when the matriarch or thepatriarch of the family passes,
that the children start todisconnect. And I can't imagine
doing that, like for us, I'mlike, we still, we're still
gigging our cousins on Facebook.
I mean, we're still tagging eachother on Facebook, our cousins,
like, Oh, hey, remember thisphoto? And so those are things
(15:45):
that are really nice.
Unknown (15:48):
It depends, it also depends what kind of family you
grew up with and the people inthe relationships you have,
right? Because, you know, we allknow people who can't wait to
get away. And rightfully so,right? So, in a way, we're we
you, you Natalie and JJ, andwe're very fortunate to have had
that kind of a family where weactually want to be closer, we
(16:09):
don't want to be a part, right?
Natalie (16:12):
Yeah, I couldn't agree with that more. I couldn't agree
with that more because, yeah,we, I know people are probably
listening to me and like, yeah,I didn't have that experience.
And you know what? I'm sorry forthat, but, you know, the thing
is, is it's not but you canchoose to make your experience
moving forward. How do you andand this is a perfect example,
because I'm a believer in this.
Even though I live away from myfamily, four hours away from
(16:33):
family, we have lots of peoplethat we're connected with
locally that, you know, so blooddoesn't mean that's the only way
to have relationship, and that'sa perfect example. So this, I
think, will segue into our nextsection, so we will be right
back
Unknown (16:52):
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JJ (17:27):
Alright, everybody, we are back here with Kristen Schuler,
the German last name, with theColombian descent, which I know
so with a great tan. So here'smy question, you are raised in
this family that's close inproximity and all of this, were
(17:47):
you ever during this time? Didyou see caregiving that you
really didn't think aboutbecause of family relations?
Were there? Was there takingcare of one another? Did you see
that with your elders? Or, youknow, what did you see growing
Unknown (18:01):
up? The example my parents set for me is the
example that I have lived by.
And when I believe maybe I wasabout second or third grade, I
got kicked out of my bedroom,and I had to give it up to
grandma, and not the not thegrandmother who lived upstairs,
another my other grandmother. Somy grandmother had had some
surgery done. It was having somehealth issues, and so I moved in
(18:22):
to my parents room, and mygrandmother moved into my room.
And so that was at a very youngage, and I remember it was a
transition of, I was a littlekid, and then I and when, when
she moved out, and was, youknow, got healthy again, and
moved back to her home. I got myroom back and we we restored it.
That was probably my firstintroduction to the role of a
(18:44):
caregiver and the role of aparent child relationship that
that that's your job. That'swhat we do. We take care of our
parents. And so she came in,moved in, moved out, Nana, who
lived upstairs through at thesame time when she got ill
around 97 and she had cancer,she had esophageal cancer, she
(19:07):
had stomach cancer, we wereright there. And so my dad now
and my mom would go upstairs andcare for her, as would his
siblings, who live very closeby, and there was this
introduced, this constantrevolving door of people coming
to care for her. And I remembersleeping upstairs with my dad.
(19:28):
We slept on the living roomfloor a couple of times when
Nana was having troublebreathing or coughing at night,
and that's just what we did. Itwasn't even a discussion. It was
Dad was going upstairs sleep onthe floor, and I tagged along.
We had our sleeping bags, and Iwas nervous for her, but I was
not nervous because I knew mydad was there and nothing can
(19:51):
could throw him and he he wouldtake care of everything.
Natalie (19:59):
This is mad. Feeling at its best. And what, what secure
attachment actually feels likeis even in times, and it in it
and and it builds resilience, isour mental health conversation,
because all this is, this iswhat relationships do. And it's
not about things. It's reallyabout time spent time with, time
being present. And that'sreally, I think, what really
(20:20):
helps us to grow internally andbuild our own resilience. You're
going through everybody's livingin Rhode Island. The New York
family did not realize we'd beliving in Rhode Island. We're
like, well, the wife iswonderful. And so when does,
when does care kind of come intoplay, because you, you've got
your career going. You're doinggreat things. I mean, you've got
(20:41):
a really successful career.
Unknown (20:43):
So caregiving started almost immediately when they
moved here, because my motherwas diagnosed a second time with
breast cancer. She had hadbreast cancer when I was a
child, and it was almost a quietexperience, because they did not
want to scare me, and she wentthrough only radiation at the
time, and she became a survivor,right? And then when they moved
(21:06):
here, it was very exciting. As Isaid, I was thrilled. It was a
big deal. She during the moveprocess. She's diagnosed a
second time, which, whichdelayed the move slightly, and I
remember going down to LongIsland and taking her to the
treatments that I could inbetween taking off of work, but
Dad, really, he took care ofher. I mean, he did everything
for her. And that's when, all ofa sudden, I saw caregiving
(21:30):
through a different lens. I sawit as a child. I saw it as a
teenager. Now I'm seeing it as aas a young man, not a dad yet,
but a young man working in myfirst job, and so thankfully,
she is now a two time breastcancer survivor, and they move
here, and they buy a boat, andwe don't have kids yet, but that
(21:51):
we are spending all of our timewith them. I'm an only child,
and I'm lucky that I love my myparents, so we spent a lot of
time, and we've got dinner thereevery Sunday, Saturday, Friday,
whatever, any nights they say,Come over dinner. We're there my
life, exactly, yeah. And so wenow are experiencing this
wonderful they're enjoyingretirement, and we're just
(22:13):
thrilled. And
JJ (22:14):
your parents were blessed. I want to jump in here. They were
55 I mean, they're I call thatreally young, but they're young
and retire. So that is, I mean,that's they're still very, very
active. And so they're
Unknown (22:26):
active, they're going up. They went on a couple of
cruises with with friends, toAlaska, to Hawaii. They really
were enjoying their time asretirees. And when my kids came
along, my son was born in 2016my daughter, in 2018 they took
such an active role in raisingmy kids because my wife and I
(22:49):
had to go back to work, and infact, I'll also add when my son
was born, and the prospect of megoing back to work, or somebody
where we had to do somethingwith our kid after a few months,
And I was, I was now a new dad,and the first thought I had was,
there's no way in hell I'mleaving this kid. I will not
even with my parents. I lovethem, but I want to be with my
(23:10):
son, and so I actually took ayear and a half away from my
career just to be a stay at homedad. Wow, which was why I would
never have thought I would dothat in my life. But I was just
so in love with this little babyboy that I'm like, I'm not going
anywhere. I'm staying Oh,I love that. I
Natalie (23:27):
love that, because it's really what it is. And so life's
moving along. And then what'sthe trigger that gets you into
care?
Unknown (23:36):
Yeah, so in July of 21 my dad had, had been retired
here, living on this pond, thislake, for nine years. My kids
were three and five years old,and life was perfect. I guess
you could call it pictureperfect. We're not rich where
you know, we deal with our fairshare of challenges, but life
was perfect because I hadeverybody I loved around me, and
(24:01):
I was over at his house rightafter July 4 holiday, where we
have a big party every year. Andwe noticed in July 4, he was a
little quiet. A couple peoplecame to the house and his dog
was losing their mind barking,and he didn't get up from the
couch to, like, quieter down orget he just kind of sat on the
couch. It seemed weird to me,but looking back, it was, it was
probably the first symptom thatI saw a couple days after the
(24:24):
fourth I was over there helpingclean the yard. Had a big
backpack blower on, and it'sloud, and a new neighbor just
moved in across the street. Iturn off the blower. We walk
across the street, my dad and I,and we're having a conversation,
introducing ourselves, and mydad paused in his sentence,
talking to this neighbor, and itwas an awkward pause. It was
just you know when you when youknow someone, and you know their
(24:45):
their tone and their cadence andtheir speech, when there's a
pause like that for no apparentreason, it something was weird.
And we said our goodbyes. I wenthome, and that night, I called
him, Rob, sitting right at thisdesk, and I called him. On my
cell, and I was like, Hey, youfeeling okay? And he said, Yeah,
I'm fine. I said, Okay. I hungup the phone. I called him two
(25:07):
seconds later, I redialed, and Isaid, Yeah, I know you just said
you're fine, but are you feelingokay, dad? And he paused for a
moment. He said, I'm confused,and that's not him, that was not
him, that was not normal. Andthat's when I knew something
seriously wrong. And I hopedthat that seriously wrong thing
was something not serious. Ihoped he was dehydrated. The man
(25:31):
only drank coffee and, like,vodka. So it's like he never
drank water. The man never drankwater, yeah, just
coffee. And I was like, I'llbring over Gatorade in the
morning and we'll figure someelectrolytes. Walk it off. Yeah,
Mike, you gotta maybe this isthe sign dad that you got us
finally start drinking water andand it, it was much worse than
(25:54):
that.
Natalie (25:55):
Yeah, so who initiated doctor's visit you or your dad?
Me?
Unknown (26:01):
Immediately. I said, we need to see your primary care
doctor. Let's just something'sweird, you know? And we hoped,
we googled everything, right? Sowe're hoping us probably his
overactive thyroid, his sisterhad overactive thyroid, so,
like, it's probably, it'sprobably something like that. So
there's no urgency. We did notthink there was urgency, yeah,
well, Natalie and JJ in the timethat we made the appointment,
(26:25):
and the seven or eight daysbetween getting to see his
primary care doctor, he haddifficulty forming words. He had
difficulty finding the words hewanted to say. So now we're
like, what? What the hell isthis? Yeah, and I'd say dad, and
he was very quiet. Mom thoughthe was, she was he was mad at
(26:46):
her, by the way, when I sat downon the next day, when I said, we
need to go see the doctor, Isaid, Mom, dad feels confused,
and I want you to know that weyou should know that something,
something's off. He's notfeeling good. And have you
noticed anything? And she said,I just, I just thought he was
pissed off at me. So you know,when you live together for 50,
however many years, you get usedto your spouse, right? But then
(27:10):
you have tiffs. And she justthought he was in a bad mood for
a couple days, which also wouldis not normal and wouldn't have
been normal for my dad, becausemy dad, I in the 37 years I knew
him. I never met the man. Inever saw him in a bad mood.
Never in a bad mood. He wasnever He was quiet but and calm.
He's never in a bad mood. So inthat time, I could ask him, Hey,
(27:32):
Dad, where, where do you live?
He's like, I live in RhodeIsland. I'm like, but where did
you grow up? And he could, hepause, and he couldn't get the
words New York out. And as youknow, and as your listeners now
know we're all from New York.
We're lifelong New Yorkers. Heknows he's from New York, and
I'd say, Dad, do you know you'refrom New York? And he'd say,
Yeah, I mean, but you can't sayit. And he'd look at me, and he
(27:53):
kind of go, Huh, wow, somethingwas wrong.
JJ (27:57):
Yeah, I want you to, because I want you to tell me about the
diagnosis. I want you to tell methe day kind of about diagnosis
and what they tell you theprognosis is for
Unknown (28:10):
him. Yeah, well, I'll start the day before prognosis,
which is when we had the CTscan. We had gotten to see his
primary care doctor. Theythought maybe stroke. We could
have been a lot of differentthings. He sends him for a CT
scan. We come back home again.
We're sitting in this office.
He's sitting right here next tome, and I am filling out a form
to have him go see aneurologist. And the doctor,
(28:32):
primary care doctor, calls me onmy cell, and he said, Hey, you
don't need to see a neurologist.
You need to see a neurosurgeon.
We see something on this CATscan, and it could be it looks
like a mass of some kind, butthe doctor, the primary Kristen,
is very careful to say it couldbe a shadow, could be nothing,
but we see something, and youreally need to see a
(28:53):
neurosurgeon and I, andimmediately, now he's sitting
right next to me and he's onspeakerphone. My dad's right
next to me. My dad was the verycalm, gentle man and but he had
anxiety. He'd get anxious aboutthe most random thing. I mean,
if he didn't know where abathroom was, he was like, I
don't know if I'm gonna, I don'twant to go to that restaurant,
(29:13):
and I'm like, but there's arestroom and it's got a single
stall. If I tell him it had asingle stall, he felt better. So
he had funny little, you know,anxiety. Well, well, now we,
you're, you were just toldthere's a mass potentially on
your brain. And I look at him,and he looks at me, and he, he
has no reaction to thiswhatsoever. And I'm like, Dad,
I'm gonna, I'm gonna make a newI'm gonna make a different plan.
(29:36):
We don't need to do this form,you know? I'm gonna do, I'm
gonna bring you home, and I'mgonna make a call and get a gene
into neurosurgeon. Okay, andhe's like, because now we're
maybe, like, 14 days out fromthe first symptom. Now he's not
saying much at all. He's reallyhaving trouble finding words.
And so, JJ, the next day I'm into see a neurosurgeon, I got on
(29:56):
the phone immediately, and Iblew through any receptionist. I
blew through everybody. And I'mlike, I need to see a
neurosurgeon today, and it wasabout three o'clock in the
afternoon. They're like, we donot have anything today, but I
can get you in tomorrow. Andmaybe that's because we live in
a tiny state, but we got luckyand we got in the next day, and
that's where his tail end ofcovid. We're all wearing masks
(30:18):
in the office. I'm there with mymom my dad were surrounded by a
lot of doctors and white coats,three doctors, the neurosurgeon,
the radiation oncologist, andthe and the somebody else was in
the room, and they tell us, webelieve what this is, is brain
cancer. We believe this is braincancer, glioma of some kind. It
(30:40):
could be what they callglioblastoma. These words are
hitting me, and I don't evenknow what the hell these words
mean. I've never heard of aglioblastoma before. I've heard
of brain cancer, and that wasthe worst possible thing this
could be, of anything that thiscould have been. This is the
this is potentially absoluteworst, right? And, and, and,
(31:03):
excuse me. And the doctor isapologizing. The radiation
oncologist is actually, isactually saying, so I'm so
sorry, in the in the discussion,and I am welling up with tears
because I'm thinking, Why areyou sorry? I thought you're
because you're gonna fix him.
We're gonna fix this. You'regonna fix this. He's not he's my
dad. He's not going anywhere.
(31:24):
Yeah, don't be sorry. And and soI was really confused and
scared. I was afraid. I wasreally afraid that
day was your dad's reaction,stone cold. It was as if you if
it was, if you told him that themail wasn't delivered. He was
the tumor, and his brain wasaffecting his comprehension, so
much so at this point that he heactually fell asleep in the
(31:49):
office. He started to doze offduring the discussion,
Natalie (31:54):
wow, and he's in it.
And if he's 55 when he retired,he's been there about nine
years, so he's not what 65 ifthat
Unknown (32:01):
he's 69 Yeah, cuz they retired, lived it before they
moved up. They were still in NewYork for a couple years. But
then, yeah, he so he's 69 yearsold. We had just celebrated his
birthday on May 29 and he wasfine on May 29 and on father's
day in June, when we took theboat out to go fishing with my
son, he was fine. He's he wasfine. And I said, This can't be.
(32:21):
He is a healthy guy. He's neverhad any problem in his life.
He's never been unhealthy. Thiscan't be
Natalie (32:28):
so when Wait, hold that thought, Jay, we have to take a
break and we'll be right
Unknown (32:32):
back. 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 (32:47):
All right, everybody. We are here with Chris Schuler, and
what he just said was, when hewas standing there and the
office, sitting there in theoffice, and they got the
diagnosis, he had all thesedoctors saying they were sorry,
and he didn't know why they weresorry. Why are you apologizing?
You're here to fix my dad. Myquestion, Kristen, for you is,
when did it flip? When did yousay, Okay, I have to be strong
(33:10):
for my dad. Where did it? Didus? Did it? Did it flip for you?
And then you say, did they giveyou a prognosis as far as a time
at some point? And you say, Igotta, I gotta take advantage of
this time
Unknown (33:22):
I walked out of the room, I asked the doctor to
please come out in the room without of the into the hallway with
me to ask what this meant. Iwanted to hear this unfiltered.
And he said, It's not good.
These are not good tumors. Butif we can get your dad five to
seven years, we will, we'll doeverything we can. And I said,
Okay, five to seven years is adifferent story, because the
(33:42):
tone was scary in there.
However, then we get in the carhome, didn't speak much. Nobody
said much, because my dad can'treally say much, and my mom is,
I think, heartbroken, trying tocomprehend what they just
(34:03):
explained to us. You know,because I hate these offices, I
hate the way these this news isdelivered. I had a nice
conversation with a neurosurgeonrecently about how we deliver
this news and and he hecouldn't, I mean, he's a smart
guy, much more educated than Iam, and after I explained the
experience and what I wentthrough, he said, I'd never
thought about it this way thatyou're describing. It's just,
(34:25):
it's just not it's cold, it'sit's and there's no good room to
hear that. By the way, there'snowhere in the world that's
going to make this softer orbetter, but there's probably
better resources and bettertools to equip patients and
caregivers as they're leavingthe room, instead of saying, if
you want to check out at thedesk and schedule your next
point. Would that be
Natalie (34:43):
great? Yeah, and don't preach your copay, in case you
didn't do that. And
Unknown (34:46):
don't forget the copay.
And and then you're dealing witha receptionist who's dealing
with 10 other people. It's justa slop. It's sloppy. So on the
way home, I'm thinking a lot.
I'm thinking about the numberone pervasive thought is, um, is
my dad not being in my. Life, Mydad dying, I never considered or
thought about the mortality ofmy parents. Yeah, I don't know
(35:09):
why. I just never thought aboutit. And to me, they were young,
they were healthy, and maybethat's why, but, and despite my
mom being a two time breastcancer survivor, she faced it,
she fought it, we did well, andeven mortality date wasn't
wasn't involved with that, but Ithink his lack of speech, his
sudden symptoms, were sounnerving and frightening, my
(35:30):
brain went in a lot of differentdirections on that drive home,
and after I dropped them off, Icried hysterically. I was
absolutely I was I was soafraid. It's fear that I've
never felt before.
Natalie (35:44):
I want to talk about, I want to get into care, because
you get into care and you do alot of care. Actually, we talked
about that. And so at thispoint, I can tell you, my brain
completely shifted into almostlike developing a crisis plan.
All right, so this is what we'regoing to do. I'm used to taking
the lead. This is what we're andthis is and we started doing
(36:06):
this and this and this and this,and these are all the things,
all the appointments that wehave to go to, and that you've
got children, you have your job.
What are the thoughts goingthrough about, how am I going to
do this? Because you're the onlychild, and you're and you're
super tight, and what's thethought process behind that? And
what, how do you start preparingbecause you're you're now kind
(36:27):
of almost and people talk aboutcancer being war, you're at war.
Unknown (36:32):
Yeah, after I finished crying, one of the first places
I went was my church, and Idropped in a pew, and I just
cried because I needed to crysomewhere else. I needed to get
rid of and pray, and I asked Godfor a whole lot of things that
he couldn't deliver. And Iprayed and I cried, and I
thought, well, what are we goingto do? What? How am I going to
(36:54):
do this? And and then giving thenews to family members who had a
million questions everybody. Itwas as if the spotlight was
entirely on me. I knew what Iwanted to do, and this was
immediate. I knew that I wouldhandle anything with doctors,
anything with clinical trials,anything with research, off
(37:15):
label drugs, nutrition, holisticmedicine. I will do all of that.
I will find it because I need tokeep my dad alive. This is the
most important job I now have.
It's more important thananything else in my life, and
I'm a dad, so I've got to I'mlucky to have a wonderful wife,
and even she knew you need to dowhat you have to do. And I knew
these were the things that I hadto do, because there's nothing
(37:37):
more important ever, that's everthis is the monumental moment in
my life, and so that's what Ihad to do mentally, was to say I
need to I need to be in fullmode to keep you alive. I never
looked at myself as like I needto figure out how to be a
caregiver. I looked at myselflike I need to keep you alive
because I'm your son and you'remy dad.
Natalie (37:59):
That's it. That's a very I don't know that we've
ever had anyone say it sosuccinctly about this is what my
immediate thoughts were and howI was going to attach it. And
you're right. None of us everthink, well, gosh, now I'm a
caregiver. This is going tosuck, and we don't. It's really
more of like, what are thethings I need to do? Because
you're my person, and I loveyou, and that's not the case for
(38:20):
everybody. Let's just be reallyclear. I always qualify that
with sometimes people care forpeople they don't like and so
and that happens, and thatdoesn't diminish the effort that
you put into place, but in thiscase, you're having to say to
your wife, okay? And she says,keep going. I'll be here. I'm
(38:40):
here to support you. So how doesyour life change?
Unknown (38:44):
Well, everything changed. I was lucky. I was
really lucky, in a way, that itwas the tail end of covid for
for at least restrictions on inperson gatherings, because I I
was working remotely. And when Icalled my my boss, she she said,
I mean, I think she just says,very simply, just do what you
have to do. Don't worry aboutanything. Do what you have to
(39:06):
do. So I was able to continueworking and continue doing my
job, and I was in a leadershiprole, and I had direct reports,
but I was able, and I was ableto trust them, because I hired
the right people trust them todo a great job. Well, I had to
do what I had to do. So I willbe forever indebted to miss
Kimberly dumpson, who was my whowas the Vice President of
(39:26):
Development at the time at thecollege I was working at. We
forever indebted to her forallowing me the space to be the
caregiver that I had to be.
Natalie (39:36):
And so you did more than just doctor's appointments,
though, because your dad got toa point where he would only
allow for certain tasks to becompleted by you, and we talked
about that, because this is someof the challenges for
caregivers, when the person onlywants one person, and that can
be an opportunity for burnoutand other feelings and things
(39:59):
like that. Us talk about whatthat looked like for you.
Unknown (40:02):
Yeah, yeah. I mean, I went full on. I wanted I wanted
my mom, who was also my dad'scaregiver, who lives with my
dad. I wanted her to meet hisneeds in only the only way a
spouse could. I wanted her tolove him. I wanted them to have
the relationship they had. I didnot want her to clean him up in
the bathroom. I didn't want herand I and she could do those
(40:24):
things, and she she probably didat times if I wasn't there, but
I was there almost 24/7 I did. Iwanted her to, I wanted to ease
it. I wanted to ease this onher, because I Googled this
disease, and I've realized thisis bad news, and I don't think
she ever Googled this. She had,she just, she just took it one
day at a time, and I wanted to,I wanted to be the buffer, like
(40:46):
I wanted everything to hit me.
You've seen probably that thatmeme or that image online of it,
it's a picture of, like a dad ora mom, and they're holding a
shield and there's arrows comingat them, and their kid is
underneath them. That's, that'sthe visual representation of
what my role of a caregiver was.
I was protecting him in any waythat I could, and at this point
(41:07):
now, he has almost lost theability to speak. After biopsy,
he couldn't really talk anymore.
So So I now also have tointerpret as his son and as his
caregiver. How do I meet yourneeds, and you can't tell me?
How? How do I know you'rehungry? How do I know you have
to go to the bathroom? How do Iknow you are cold or that you
(41:27):
just went to the bathroom? Howdo I know what you want to eat?
How do I know if you're in pain?
How do I know if you're scared?
I want to meet. I want I'mtrying to meet. These are the
things keeping me up at night.
Is he afraid? How do I fix thattomorrow? How do I how do I make
(41:48):
him feel unafraid? Because we'renot keeping anything from him.
He. We're telling him what'shappening. Before he lost the
ability to speak, he and it washard to get this sentence out,
but we talked to him about thethe standard of care and brain
cancer, which sucks, but wetalked about what the standard
of care was and and we'd begoing through chemo and
radiation and not and he said,will this help me get my words
(42:09):
back? And that was one of thelast sentences he ever spoke
freely. And I, I said, yeah, Ihope so. That's the goal. That's
the plan. Can do everything wecan, dad. And so there's so
much, not only physical aspectof caregiving, but the mental
aspect of caregiving was soheavy. And I, and you said
(42:32):
burnout before, I did not lookat myself. I did not think about
myself at all in this duringthis time. And that is not good.
And I'll say that, that ifthere's a caregiver listening,
which I'm sure there is, it isnot below you to accept help,
and it is not below you or wrongto take time for yourself if you
(42:56):
can, because I couldn't, so Ididn't, but it, it's Oh, it's
okay if you, if you have to, sothat you can be the caregiver
that you need to be and want tobe.
Natalie (43:08):
You know, it's funny, because it sounds like you
really didn't give yourself thespace or permission to be able
to take that time. I'd sayrespectfully, I think there
probably was a person that mightbe able to help you with some of
the tasks. I understand some ofthe things we're going sure and
but I think for me, it was aboutcontrol in a situation that I
had no control over, so I wouldgrasp on to anything I could
(43:32):
control. And so I hear it feelsa little bit like that. I relate
to that feeling of I must dothis. I'm the only person who
can do this for Jason. I'm theonly person who can talk to the
insurance companies and crawl uptheir rear or the nurses or the
whatever about what he needs.
And I think that, you know,without having my sisters and
some very close friends to talkthrough that and to be able to
(43:56):
kind of release that pressure onmyself to say I feel like I'm
failing. I don't feel like I'mdoing enough. I wish I could do
something different and have agood snot fest every now and
then. That's a lot to hold in. Imean, how you're sleeping?
You're eating, like seeing thekid?
Unknown (44:15):
Yeah, I'm seeing my children. But no, I'm not really
eating well. And my wife was mymy rock, and at night, every
night, at the end of the night,because I would be at my dad's
house. I'd work from his house.
I'd be at I'd get my kids. Thiswas what my days look like. I
get my kids up and ready and outthe door, school, whatever,
wherever they had to go. I go tomy mom and dad's house
immediately, and I would get himout of bed, cleaned up bathroom,
(44:35):
whatever we needed to do. Then,you know, my mom would do, you
know the let's make lunch orbreakfast, coffee, whatever, and
I'm in the house all day long,helping him when I can. I am
there until dinner time. We gethim set up for dinner. Then I
run home, and I have dinner withmy kids and my wife and my
family, and then we get the kidsto bed at eight o'clock, and at
(44:55):
830 I am back out the door overthere, getting. Him up, ready to
for bed and cared for. I laynext to him every night, and I
rub his head until he fallsasleep. And that is my routine,
and it was important for me todo that and to be there. I would
not have chosen any other way toshow up for him, and I'm glad I
(45:21):
took that time. Glad. I really,I'm really glad I took that time
to do that with him and spendthat time, because time is all
we have, you know, and I hate toget emotional, but, but it's not
money, it's not things, it istime with the people we love.
And my knew that my time wasticking, and it was ticking fast
with this disease. So so thatwas, that was your routine. So
(45:46):
to come back to your point ofburnout, I was not eating well.
At one point we had a visitingnurse come to the house, taking
his vitals, because we hadvisiting nurses, occupational
therapy, physical therapy,speech therapy with everybody.
And at one point, this nursesays to me, I'm taking your
vitals next, sweetie. And I'mlike, I'm fine. You don't need
to take my vitals. And my heartis racing even saying this,
(46:08):
because it brings me right backthere, and she takes my vitals.
And on the way, as I walk herout the door, she said, Honey,
I'd like you to go to thenearest walk in or hospital your
or call your doctor, becauseyour blood pressure is almost at
stroke level and not I'm anEagle Scout, I but I did not
remember my first day of meritbadge of what a good blood
pressure was and and she gave methe numbers. I don't remember
what they were, but she said,You need to go to a doctor now.
(46:29):
And I called my doctor, and I'mso fortunate to have a great
doctor. I got I called hisoffice, and they said, Come
right in. And I drove right overthere. I'm in the parking lot,
and there was an ambulancethere, somebody was being
transported out, and all of asudden, I am, I think I feel
like I'm gonna die in theparking lot. I was sweating. My
heart was racing. I have neverhad the kind of anxiety I'd ever
(46:53):
had, like I did that parkinglot. I thought I was, I thought
I was gonna die. And then now myin my head, the thoughts are,
wow, this is it. Who's gonnawho's gonna take care of him
now, who's gonna take care of mykids? I'm gonna die in this
frickin parking lot right now.
This is it. And I walk in andthey can tell I'm a little shook
up, and they connect me to somestuff in there, and they calm me
(47:15):
down a little bit. And I couldcome and my doctors like, You,
you, you have a lot going on.
This is not easy. And I youneed, we need, I can help you.
We need to help you. And theyput me on. I don't know what the
pill was. Took a little bluepill. I forget what it was, but
he's like, this should take theedge off while you continue
caregiving. And I was like,Sure, give it to me, because I
(47:36):
didn't care what it was. Ididn't look at the label or the
bottle. I'm just like, yeah,whatever's gonna help me help
him. And that's what caregiversrun into and and that's not
good. But I'll also say I got, Ihad advice from a lot of people,
and a lot of people would say,How are you doing? How are you
Well, I talked to my one friendwho was a Marine, and I've
shared this often, and I said tohim early on in my dad's
(48:00):
illness, what was going on, andhe gave me very different advice
than anybody else has ever givenme. And it may not be the best
advice, but I will share it,because it was the advice that I
needed at the time. He said, Youneed to be a rock right now for
your family. You can cry later,but you need to take care of
everything right now. You needto do it. You need to show up.
You need to show up and put upwith it. At first I was like,
(48:21):
Fu, like, What are you saying tome? I was almost
Natalie (48:26):
like, total Marine, though that's a marine mindset,
though that is a marine that isa marine mindset, like, put
yourself aside and get to themission, and whatever the end
result is that you're trying toseek and you sacrifice no matter
what. Get it,
Unknown (48:40):
and that's why they are incredible, and that's why we
are we have the freedoms we haveand the safety we have, because
there are people that think likethat. So after he said that, I
started to think, you know, he'she's probably right. But he also
said to me, and if you're goingto pray to God, don't pray for
what he can't give you. You prayfor what he can give you. And
that flipped my mindset of, Ineed to pray for strength. Then
(49:02):
I need to be strong. If I askhim for anything, I'm not going
to ask that he takes thisdisease away from my dad, which
is really what I want. I wanthim to live and survive. But I I
heard him loud and clear and andso that that advice also helped
me. It really did. It helped mesurvive this, this entire six
month ordeal. Wow.
Natalie (49:24):
So your dad lived for six months after his diagnosis.
Unknown (49:29):
Six months and six months goes by in the blink of
an eye in our lives, doesn't it?
Yeah, six months is nothing. Itwas the longest six months of my
life, and it has become the sixmonths that transformed me into
who I am today. Because afterthat, you can't be you can't be
who you were before, no, afteran experience like that, and
(49:53):
Kristen, you both know that
Natalie (49:57):
you're not the same.
JJ (49:59):
Go ahead, Jack. You. It so, yeah, so that's what I want to
know, Kristen, because you, youwrote again, some beautiful
things about that. Tell me whoyou are today. Tell us in our
audience how it changed you andwhat you have become.
Unknown (50:13):
This morning, I was looking for a shirt to wear, and
my daughter was getting readyfor school, and I said, I'll be
right there. I got to get upshirt, and I was grabbing a
college shirt, and she she gaveme a sweatshirt, and she's like,
wear this. And it said, and itsaid, Dad. Now she sees this
sweatshirt as it says, Dad,because I'm her dad. That's
right, my wife gave me thissweatshirt Father's Day a couple
(50:35):
of years ago, and when I saw it,and it was a Father's Day gift
for me as a dad. When I sawthis, I saw my dad, yeah, and so
who I am today, I think, is whohe would have wanted me to be,
which is dad. I am dad, firstand foremost and always. It's
(50:58):
not my job. I could care less.
It's not any of those things.
It's it is the thing I take mostseriously in my life, as being a
father. That's who I am.
Natalie (51:09):
I love that. I love that. And it just comes back
from the inner workings and theweaving of the love and support
and that you had from childhoodand that natural, like you were
clearly meant to be exactlywhere you're at, and everything
that's happened, no matter howhard it is, and the short time
that you feel like you've beenshort changed. It's all these
(51:32):
things because you've done somuch after to advocate on behalf
of others. And I think that'sreally where people have to
decide, how are you going totake this experience and what
are you going to do with it? Andeverybody does something a
little different with it. Imean, we started a podcast like,
like, we're like, we had neverlistened to a podcast, and so
(51:55):
and we think, How can we tellother people they're not alone?
And I think about the work thatyou're doing to advocate. And
we've had other friends likeKristen introduced me to other
folks like Shannon trap Haganwas on and Kelsey Yeager, who
was on, if you haven't listenedto their podcast, again, great
people. And this is a communitythat is alarmingly small, if you
(52:18):
think about it from the worldstandpoint, it's a small
community, and we're all tryingto use our shared or collective
voices to be able to makeeffective change for others who
don't know what's coming. Right?
That's what I would say. And Ithink your your thoughts on time
is the true thing that you don'tlike. This is the true
commodity. Time is what youwant, and you want to hold on
(52:41):
to, and how do you use it? Well,I know we're at, we're well past
our time. I've said this foreveryone that we've done. I'm
like, Oh, we're well past ourtime. We're fine. So, you know,
I want to go into, I want to gointo sister questions. So Jay JJ
has always got her head down,jotting down some notes, because
she's got very meaningful sisterquestions. So J Do you want to
(53:03):
start with a sister
JJ (53:05):
question? Well, I'm so many like moments there. When you
came on, I noticed your dadshirt. First of all, Kristen, it
hit me, and I was like, and Ialways have my question, but I
always have a comment as well.
In the beginning, we talkedabout your adoption, and you
said they chose you, but I guessmy thought in the whole podcast
is that they chose you, but youwere chosen for them. Oh, I
(53:26):
guess that's my that is mythought. My takeaway from it is
that you were absolutely chosenfor your family. Thank you. My
thought, my happy, my funnythought is, there's so much love
and laughter with your family,and I feel like that continues
to carry tell me something thatin your memories, that you will
that brightens you, that makesyou laugh about your dad.
Unknown (53:51):
Oh, my God, my father was the most kind, gentle man
and funny. He was like the ChevyChase of his family. He was
hysterical. We talk aboutcaregiving, and this is so
messed up. This is I'm going toshare the story because it's so
messed up. But I think yourlisteners can can relate to
this. My dad had this greatstory of he was in the shower
(54:12):
with my mother, showering herwhen she was recovering from a
surgery that she had had after acar accident, and she was so,
like, the medicine made her sotired that she started fall
asleep in the shower. She'sstanding up, and so he is like,
I'm in the shower with yourmother, and she starts to fall
(54:33):
asleep, and I'm holding this wetfish who's falling out of my
arms, and she's she's gonna hither head, she's gonna hurt
herself, and he's like, Yeah, Iknow you're sleeping. Stop
sleeping, right? And it'shysterical and and to find humor
in times like that. And I didthe same thing with him. So I
would change at night, I wouldchange his clothes, and I mean,
(54:55):
he's totally nude, and he didn'tcare, because I'm his son, and
we're just whatever. So. Like,I've never shared this out loud,
but when you're when you aresedentary, you get rashes,
right? We know this. So he hadrashes, you know, around his
groin and and I would laugh withhim, and I'm like, Dad, I'll do
everything for you, but I'm notdoing that. I'm calling mom in
(55:17):
for that. Okay? So he would giveme a little smirk. So mom would
come in and she'd put the lotionon her hand and and start, well,
every time she did it, I wouldput on some terrible song, okay?
I would put on I'm too sexy forwhatever. I would put on the
most ridiculous song. And Iwould get up on the Ottoman at
(55:38):
the end of his bed while she'sputting the lotion on, and I
would dance, and he would laugh.
I mean, he would have that andhe couldn't talk anymore, but he
was hysterical. And my mom waslike, pissed. She was like, You
are the two dumbest idiots I'veever met. And this is how this
went, every time it happened.
And I'll tell you what itreminds it brought laughter into
(56:02):
the worst possible situation wecould find. But I'd be damned if
I wasn't gonna do everything Icould to remind him of who we
are. We are alive, yeah, and,and we have to find, we have to
find joy, and that's what wefound. I mean, it's ridiculous.
Natalie (56:22):
No, I will tell you, I feel the same way, you know, and
for us, it was bagels in NewYork, even though Jason had, I
mean, the one thing he probablyshouldn't have eaten was bagels,
because Jason had burned upsalivary glands. He had no
saliva and so, but we're takingpictures with bagels, like we're
we're clinking glasses ofchampagne. We're like, Oh, we're
(56:43):
eating bagels in New York City.
Look at us living our bestlives. We just so happen to be
having cancer treatments. And soit's it's finding, I think this
comes back to and this is astory. It's not letting cancer
take over our lives, and it justis a part of our lives, and it's
not defining who we are. It is apiece of our story, and we can
(57:03):
still find joy. We can stillfind it may be hard to find, but
darn it, do keep looking,because there are those moments
that are glimmers that willallow you to say, I can look
back at pictures. I gotta loveFacebook for the memories, and
it comes back up and you'relike, I knew what I was doing,
but that was a funny moment.
(57:23):
Like, those were moments thatyou could have, or moments that
you're like, I was at peace inthat moment, yeah, and I was
able to achieve it for even asecond. I think that's so
important.
Unknown (57:35):
Well, we learned so much. We learned so much from
these experiences and and sadlywhen we are diagnosed. And for
cancer patients who arelistening when you're diagnosed,
it's this rude awakening of whatmatters in your life and and
what a gift to me that the rudeawakening for my father became
this clear, that it offeredclarity of what matters and that
(57:58):
it's joy. It is joy and kindnessand love. Those are the things
that matter and and I could havelived the rest of my life never
having learning that learn thatlesson, and there are people who
we know never learned thatlesson. And so to come away from
these difficult things, it'sit's heavy, but it's also a
reason why we can't let thosethings, those very difficult
(58:20):
things, in our lives. We can'tlet those things be the the
catalyst to finding joy. We haveto find it ourselves. It's
there, and we have to find
Natalie (58:31):
it. That's the money, friend. That's the money. People
always wonder what the secretsauce is to life, and I think it
tends to be when you have this,this critical event that you
don't plan for. It's alwayssomething not planned for, and
and if you don't take it andinternalize it, you'll it's easy
to slip back into old patterns.
That's the one thing is it'seasy to slip back into old
(58:53):
patterns. So you have to fightto stay present, and fight to
for what and to remember, andthat's the painful part. If you
really think about it, it'spainful to remember about that
time, but then it reminds you,what are my priorities? And work
ain't number one, and I have toremember that. You know, Chris,
thanks so much for being with usand we could. You're the
(59:18):
honorary brother. You are thebrother we always wanted. You
have two new sisters, and eventhe baby would be your sister.
She would love you. But FYI, sixone, and so yeah, the baby, six
one. I'm only 510 JJ is theshort one. But you know, thank
you so much for coming on andsharing just such words of
wisdom and being so authenticand open about the good, the bad
(59:42):
and the completely, you can'tmake this up, but dancing at the
end of the bed to I'm too sexyis really going to make the rest
of my day, the rest of my day,because you need to watch the
YouTube video so you can seeChris, so you can visual. Lies.
Kristen going, I am too sexy forridiculous.
Unknown (01:00:05):
It's the ridiculous chaos of of the the craziness of
what life is and what grief isand what love is. All these
things are complicated, but inthe end, they're
Natalie (01:00:16):
beautiful. Yeah, they are beautiful. They are truly
are. Jay, will you take us out?
JJ (01:00:22):
I will, guys, thanks for listening, and until we confess
again, we'll see you next time.
Natalie (01:00:29):
All right, bye, bye.
Well, friends, that's a wrap onthis week's confession again.
Thank you so much for listening.
But before you go, please take amoment to leave us a review and
tell your friends about theconfessions podcast. Don't
forget to visit our website tosign up for our newsletter.
(01:00:49):
You'll also find a videorecording of all of our episodes
on the confessions website andour YouTube channel. Don't
worry, all the details areincluded in the show notes
below. We'll see you nextTuesday, when we come together
to confess again. Till then,take care of you. Okay, let's
(01:01:10):
talk disclaimers. You may besurprised to find out, but we
are not medical professionalsand are not providing any
medical advice. If you have anymedical questions, we recommend
that you talk with a medicalprofessional of your choice. As
always, my sisters and I, atConfessions of a reluctant
caregiver, have taken care inselecting the speakers, but the
(01:01:33):
opinions of our speakers aretheirs alone. The views and
opinions stated in this podcastare solely those of the
contributors, and notnecessarily those of our
distributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
care LLC. Thank you forlistening to The Confessions of
(01:01:55):
a reluctant caregiver podcast.
Hey guys, it's your favorite sisters with the
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate, beinspired. Lead with helpful tips
and resources, and, of course,laugh. Now let's get to today's
confession. Look, Jay, we cameright in mouth stretching.
JJ (00:30):
I wonder, I wonder if, if that like you burn calories when
you do that. I don't
Natalie (00:38):
know, it's almost like but, you know, musicians sing
before they start like Mommy,mommy, mom. That's my way of
singing this morning and then.
But you know, do otherpodcasters open their mouth
closed like to get their jawsready for some chat? Yeah, I
know right. How many people, howmany podcasters out there just
(00:58):
doing I
Unknown (01:02):
really should watch the video. Natalie and I do a Malva.
Natalie (01:06):
Yeah, we look actually, I feel like we look like a T
Rex.
Unknown (01:11):
Hey, guess what?
Natalie, hey, we have a guest.
Natalie (01:16):
We should do a caregiving podcast. What a novel
idea.
JJ (01:18):
Go ahead. Tell us just something special about this
guest. You want me to do myvoice?
Natalie (01:23):
Yes, you can. Boy, it's always like we've had a bunch of
guys on in the last recording. Ilove
JJ (01:29):
that I do too, because I feel like they're so, you know,
there's they're sounderrepresented, and I think
it's so rare, that they willraise their hand and say, Hey,
I'm a caregiver too. And it's,it's fantastic that we're
getting so many to come out andspeak, because once one does,
their voice is just so pervasivein the caregiving crowd. So
(01:50):
thank you, Kristen. That was hisbreaking out like it's a Chris.
Well, let me tell you a littlebit about Chris Schuler. That's
who we have with us today. SoKristen Schuler is the primary
caregiver to his late dad, whowas diagnosed with glioblastoma
in July 2021 now I say isbecause today, Kristen says his
(02:11):
caregiving continues for hisfather's legacy and his memory.
You'll learn Kristen is a fierceadvocate driven by his father's
laughter and love and adiagnosis that made their entire
world stop spinning. And when hesaid that, Ned, I really felt
like that was so much like mom'sdiagnosis. I never really
thought about it like that, butyour world stops. What Kristen
(02:34):
learned during their previoustime together. He's here to
share with us today, and there'sa lot he learned. So Chris, I'm
so excited to have you here withus today.
Unknown (02:44):
Thank you so much. JJ, Thanks, Natalie, that
introduction almost brought meto tears. So let's we're all
starting on a good note here.
Well, I'll get the Kleenex out
Natalie (02:54):
exactly, exactly, well.
And you know, I think it's soimportant you have such a unique
story. But that's the beauty ofcaregiving is that every story
is a little bit different, andthere's differences for the
reason who the person you'recaring for, what the illness is,
or what the reason forcaregiving is, but it's all
about what really connects us ascaregivers is that shared
(03:15):
experience of care, and how doWe take the lessons learned in
each of our individual journeys,and then, like, put them
together to have this amazingresource to say, this is what I
did. And so, you know, peoplewill try it and say that worked
for me. Oh my gosh, thank you.
That was the that idea I waslooking for. And so that's why I
(03:37):
love this. And I love Kristenthat you're coming on to
represent the male population ofcaregivers, because 40% that's
what they've got on thestatistics right now. And we
know there's a bunch more. Weknow there's a bunch more. So
Kristen, we always start offlike, I say, I say this every
time we start from thebeginning, you were born, but
kind of, give us yourbackground, give us the kind of
(03:59):
set the stage, and we'll workour way up to care, but don't go
too fast. Give us a good story,
Unknown (04:06):
sure, sure. No. Thank you so much. And you'll hear my
dog either barking or jinglinghere in the background. But, and
you know the stats, I did notknow that 40% of caregivers are
men, and I'm surprised. I'malmost surprised in a way, to
hear that, yeah. And so my storybegan, you know, we all think
(04:26):
we're special, we're unique, andI guess we can make the
arguments that we are. And mybeginning started in South
America. I am originally adoptedfrom Colombia, and so my last
name doesn't usually match whatpeople might think I look like,
which is a fascinatingdiscussion and exercise and
(04:48):
identity. Who are we reallyright? Am I? Chris Schuler from
there, who tans really well inthe summer, and we'll never
break five, four or am I? Or amI? Chris. Schuler, with the
German last name, who whoseparents have ancestry in Ireland
and Germany and England. And soI've always found identity be a
(05:10):
fascinating part of my life,growing up and and some people
will ask, well, when did youfind out you were adopted? Well,
I never really found out. I justknew it was. It was something I
knew from from before I hadmemory. It was something that
was just known and and so Icounted myself almost as a as
(05:33):
somebody in a little differentbut, but a very I had a special
opportunity, and I knew thatfrom childhood, I just knew that
I was chosen like I was. I waspicked to be my mom and dad's
son, which is really a beautifulthing to grow up with. You know,
as children, we absorb so much,right? And so that was what I
(05:56):
absorbed. That was the firstthing I absorbed as a child, was
love and I was, I was theirpick, which was a great way
Natalie (06:04):
we all love to be chosen that is such. You know,
working in the foster caresystem, there's so many children
who feel that they're unwantedbecause, for whatever reason,
their parents aren't able tocare for them. But to kind of
shift it to I got picked, and Iwas so loved and wanted that I
was I was I was it was it is aprivilege. It is a privilege to
(06:27):
get to work with children.
Always say that to my fellowcolleagues, and you know, I
think it is a privilege, andit's a different set of
circumstances. But I love that.
I love that angle, because Ithink it, I think it's very
true. I think it's true, and Ithink it's healthy, because we,
(06:48):
all, every one of us in ourbasic elements, want to be
attached to someone. We want tofeel connected. We want to feel
like we belong. And I soundslike that, that belonging, that
sense of belonging, reallyendeared you to your parents
even more like, you know. Thinkabout it in the future. How did
(07:09):
this impact this culture andthis multiculture? You've got
multiple backgrounds, honoredthat recognized and honored
that, you know, hey, this iswhat we believe and and this is
who my identity is. I'm reallyglad, I'm glad we went there
first, because that's that'sinteresting. Now everybody's
gonna be like, I want to
Unknown (07:30):
see YouTube. Yeah, yeah. Well, yeah, yeah. That's
my that's my foundation. Infact, there's, there's a frame I
have on my shelf here in myoffice, and it has been in my
room since I was born, and I'vecarried it with me everywhere.
And it starts left a poem. It'sabout our adopted child, but it
begins saying, We you are thechild. You are not the child of
(07:50):
our bodies. You are the child ofour hearts. And those words have
always been inscribed over myhead for a lifetime. And when I
became a dad, fast forwardingway far into this story. But
when I became a dad, it was asurreal experience, because I
hadn't thought I have I hadn'tthought much about being
adopted, because that thatreally doesn't define me. And
(08:12):
but when my kids were born, andI looked my son in the eyes and
and he was the first human thatI have known in my life, that is
a part of my body. He's my wehave the same blood that was so
surreal and a reallyoverwhelming. It was an
emotionally overwhelming feelingthat I didn't expect to happen
(08:35):
moments after he was born.
Natalie (08:38):
I love that. I love that. Yeah, so you So you grew
up, and you have great parents,and you're having because you're
an only child. Too Correct.
Unknown (08:46):
I'm an only child because it was so dangerous to
adopt a child from Columbia inthe mid 80s that my parents, who
were both blue collar NewYorkers, they had never left the
country, and they got a phonecall that said, your baby's
ready, and they hopped a flight,went down there. They brought
genes, they brought stereoequipment so that they could
(09:09):
barter to get out of thecountry. They were prepared. The
adoption agency actuallyexplained to them that you will
have to barter to get back out.
And when they landed, theirpassports were confiscated, and
they did, in fact, have tobarter to leave the country. And
so when they got back and later,years later, when I asked, Why
don't I have a brother orsister, my mom would always
laugh and say, we didn't knowwhat the hell we were doing. As
(09:30):
two idiots from New York withwith high school graduate
degrees, we had no clue what wewere getting ourselves into.
When we got out alive, we werelike, well, let's, let's just
stick here. We don't even wantto leave our kid. We're good,
we're good,we're good jeans, we're good
jeans, man, let's not go back.
Natalie (09:50):
You know, I love that and so, so life then, you know,
I'm assuming normal childhoodgrowing up, went to went to
school, graduated high school,went. On go to college. Keep
going, keep walking.
Unknown (10:03):
Yeah, yeah. I mean, lucky to grow up with a with a
wonderful family surrounded bylove and laughter and and went
to, you know, grew up on LongIsland, New York, which is a
which is a big part of myidentity, and probably my accent
and my attitude, most likely,and and so grew up there and had
a great, great childhood. My andmy parents, like I said, blue
(10:23):
collar. My mom was a schoolsecretary. My dad worked in a
sewage treatment plant, a verydangerous line of work that I
recognized early in life. Andand I was lucky to have an
opportunity to go to college,and, and they had not been to
college, so that was a big deal.
And I went to college in RhodeIsland, where I met my future
wife. Within minutes of movingin, I meet the girl in the dorm
(10:46):
next to me, in the dorm roomnext to mine, and fast forward,
she becomes my wife. And so wemake that's like she's the one
Natalie (10:58):
you love, that I love.
How fate just kind of our I say,God, God puts you right next to
where you need to be. And so Ilove that. And so, so going
through school, found the loveof your life. You get married,
and kids come next, I'massuming, yeah, you
Unknown (11:14):
know, I thought she would love to live in New York.
I was dead wrong. She was aRhode Islander at heart, and so
she was never going to leave thestate and and so we made our
life here, and I got into thenonprofit sector in youth
development, then just startedworking. You know, you My mom
always told me, growing up, thisis what you do in this order,
right? You go to school, thenthen you get married. You do
(11:36):
not, don't have kids before youget married. That was a bird.
Natalie (11:38):
That was That is our family as well. Sorry to anybody
who went out of order. But, Imean, my mother always said a
baby some wedding story comesbefore baby story on TLC, yes,
there's a reason. Amen.
Unknown (11:49):
It add is absolutely true. And so I just, we just
began our lives together, and mywife became a teacher and and we
eventually found a house, wemoved in. We life was just life
was just moving along. We weredoing the things that we were
supposed to do right, the thingsI think that we're all meant to
do. And I convinced my mom anddad to to move out of Long
(12:11):
Island, New York and move northto Rhode Island. Nobody does
that. By the way, no ask any NewYorker or any New Englander,
they don't go north. They gosouth because South makes sense,
South is cheaper.
Natalie (12:24):
South is warmer.
Unknown (12:28):
Is warm. It's beautiful. It's absolutely
beautiful. So we buy this housein a nice little neighborhood
here in Rhode Island, and myparents are looking at places in
in Florida and South Carolina.
They're talking aboutretirement, might they were
lucky to have both been civilservants so they could retire at
55 and we're looking at houses.
And my dad, he'd love to be onlike the real realtor real
(12:50):
estate websites, right? And sohe finds this house about six
houses down the street frommine, and it's beat up. It is
old. It's been abandoned forfive years, but it's on a lake.
It's on a beautiful lake. Now wecouldn't afford house on the
water, so we're not on the lake.
But he saw this thing, and hethey made a visit up here, and
that was it. It was meant to be.
(13:13):
So they retired here, six hoursup
Natalie (13:16):
north, with more snow,
Unknown (13:18):
more snow cold. And he hated the cold.
JJ (13:22):
So I do have a question. So you know, in your bio, you
wrote, I was surrounded by loveand laughter. My dad was my best
friend. You wrote all this inyour bio, and your parents are
moving like, six houses down,and I lived really close to my
parents for quite a while. Itwasn't a bad experience.
Actually, I always say whenthere was buy one, free at the
store. I was the free. My momwas the buy one. It worked
(13:44):
really well for me for so long,when they moved how? What was
your first feeling about that?
Was it like, holy crap, mom anddad are following me? Or was it
pretty comforting to know, hey,we're gonna have this family
where, yeah, we're gonna sharedinner, where mom and dad are
retiring. I think this is thisis our life. It's going to be
good. What was your firstfeeling with that?
Unknown (14:04):
Oh, I was thrilled. I was absolutely thrilled because
I grew up in a house where mygrandmother lived above us and
in the same house, and my dadgrew up around the corner from
his cousins, six houses aroundthe corner, and so family and
closeness. Nobody can make theargument that my family is not
(14:25):
close. We are incredibly notjust our, our our small group of
family, but our, our extendedfamily. We are all just very
close. So when they made thismove, it was, it was it was just
wonderful. I was so happy. I
Natalie (14:41):
love that. It's a win for you, because, you know, and
I hear you saying that whatyou've got is a multi
generational household, andpeople who have grown up around
family were the JJ and I are theonly ones who moved away. And
Audi was awful. We were terriblepeople. We were terrible people.
What's wrong with you? Whydon't. You like Tennessee, why
(15:01):
don't you do this? And so, butall of our cousins, everybody,
everybody lives within, I don'tknow, 1520, mile radius, and,
and, and we grew up with ourcousins, and I, I miss that for
others, I miss that familyconnection, the extended family.
And because a lot of people, Ithink there are people who worry
(15:23):
about, when the matriarch or thepatriarch of the family passes,
that the children start todisconnect. And I can't imagine
doing that, like for us, I'mlike, we still, we're still
gigging our cousins on Facebook.
I mean, we're still tagging eachother on Facebook, our cousins,
like, Oh, hey, remember thisphoto? And so those are things
(15:45):
that are really nice.
Unknown (15:48):
It depends, it also depends what kind of family you
grew up with and the people inthe relationships you have,
right? Because, you know, we allknow people who can't wait to
get away. And rightfully so,right? So, in a way, we're we
you, you Natalie and JJ, andwe're very fortunate to have had
that kind of a family where weactually want to be closer, we
(16:09):
don't want to be a part, right?
Natalie (16:12):
Yeah, I couldn't agree with that more. I couldn't agree
with that more because, yeah,we, I know people are probably
listening to me and like, yeah,I didn't have that experience.
And you know what? I'm sorry forthat, but, you know, the thing
is, is it's not but you canchoose to make your experience
moving forward. How do you andand this is a perfect example,
because I'm a believer in this.
Even though I live away from myfamily, four hours away from
(16:33):
family, we have lots of peoplethat we're connected with
locally that, you know, so blooddoesn't mean that's the only way
to have relationship, and that'sa perfect example. So this, I
think, will segue into our nextsection, so we will be right
back
Unknown (16:52):
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JJ (17:27):
Alright, everybody, we are back here with Kristen Schuler,
the German last name, with theColombian descent, which I know
so with a great tan. So here'smy question, you are raised in
this family that's close inproximity and all of this, were
(17:47):
you ever during this time? Didyou see caregiving that you
really didn't think aboutbecause of family relations?
Were there? Was there takingcare of one another? Did you see
that with your elders? Or, youknow, what did you see growing
Unknown (18:01):
up? The example my parents set for me is the
example that I have lived by.
And when I believe maybe I wasabout second or third grade, I
got kicked out of my bedroom,and I had to give it up to
grandma, and not the not thegrandmother who lived upstairs,
another my other grandmother. Somy grandmother had had some
surgery done. It was having somehealth issues, and so I moved in
(18:22):
to my parents room, and mygrandmother moved into my room.
And so that was at a very youngage, and I remember it was a
transition of, I was a littlekid, and then I and when, when
she moved out, and was, youknow, got healthy again, and
moved back to her home. I got myroom back and we we restored it.
That was probably my firstintroduction to the role of a
(18:44):
caregiver and the role of aparent child relationship that
that that's your job. That'swhat we do. We take care of our
parents. And so she came in,moved in, moved out, Nana, who
lived upstairs through at thesame time when she got ill
around 97 and she had cancer,she had esophageal cancer, she
(19:07):
had stomach cancer, we wereright there. And so my dad now
and my mom would go upstairs andcare for her, as would his
siblings, who live very closeby, and there was this
introduced, this constantrevolving door of people coming
to care for her. And I remembersleeping upstairs with my dad.
(19:28):
We slept on the living roomfloor a couple of times when
Nana was having troublebreathing or coughing at night,
and that's just what we did. Itwasn't even a discussion. It was
Dad was going upstairs sleep onthe floor, and I tagged along.
We had our sleeping bags, and Iwas nervous for her, but I was
not nervous because I knew mydad was there and nothing can
(19:51):
could throw him and he he wouldtake care of everything.
Natalie (19:59):
This is mad. Feeling at its best. And what, what secure
attachment actually feels likeis even in times, and it in it
and and it builds resilience, isour mental health conversation,
because all this is, this iswhat relationships do. And it's
not about things. It's reallyabout time spent time with, time
being present. And that'sreally, I think, what really
(20:20):
helps us to grow internally andbuild our own resilience. You're
going through everybody's livingin Rhode Island. The New York
family did not realize we'd beliving in Rhode Island. We're
like, well, the wife iswonderful. And so when does,
when does care kind of come intoplay, because you, you've got
your career going. You're doinggreat things. I mean, you've got
(20:41):
a really successful career.
Unknown (20:43):
So caregiving started almost immediately when they
moved here, because my motherwas diagnosed a second time with
breast cancer. She had hadbreast cancer when I was a
child, and it was almost a quietexperience, because they did not
want to scare me, and she wentthrough only radiation at the
time, and she became a survivor,right? And then when they moved
(21:06):
here, it was very exciting. As Isaid, I was thrilled. It was a
big deal. She during the moveprocess. She's diagnosed a
second time, which, whichdelayed the move slightly, and I
remember going down to LongIsland and taking her to the
treatments that I could inbetween taking off of work, but
Dad, really, he took care ofher. I mean, he did everything
for her. And that's when, all ofa sudden, I saw caregiving
(21:30):
through a different lens. I sawit as a child. I saw it as a
teenager. Now I'm seeing it as aas a young man, not a dad yet,
but a young man working in myfirst job, and so thankfully,
she is now a two time breastcancer survivor, and they move
here, and they buy a boat, andwe don't have kids yet, but that
(21:51):
we are spending all of our timewith them. I'm an only child,
and I'm lucky that I love my myparents, so we spent a lot of
time, and we've got dinner thereevery Sunday, Saturday, Friday,
whatever, any nights they say,Come over dinner. We're there my
life, exactly, yeah. And so wenow are experiencing this
wonderful they're enjoyingretirement, and we're just
(22:13):
thrilled. And
JJ (22:14):
your parents were blessed. I want to jump in here. They were
55 I mean, they're I call thatreally young, but they're young
and retire. So that is, I mean,that's they're still very, very
active. And so they're
Unknown (22:26):
active, they're going up. They went on a couple of
cruises with with friends, toAlaska, to Hawaii. They really
were enjoying their time asretirees. And when my kids came
along, my son was born in 2016my daughter, in 2018 they took
such an active role in raisingmy kids because my wife and I
(22:49):
had to go back to work, and infact, I'll also add when my son
was born, and the prospect of megoing back to work, or somebody
where we had to do somethingwith our kid after a few months,
And I was, I was now a new dad,and the first thought I had was,
there's no way in hell I'mleaving this kid. I will not
even with my parents. I lovethem, but I want to be with my
(23:10):
son, and so I actually took ayear and a half away from my
career just to be a stay at homedad. Wow, which was why I would
never have thought I would dothat in my life. But I was just
so in love with this little babyboy that I'm like, I'm not going
anywhere. I'm staying Oh,I love that. I
Natalie (23:27):
love that, because it's really what it is. And so life's
moving along. And then what'sthe trigger that gets you into
care?
Unknown (23:36):
Yeah, so in July of 21 my dad had, had been retired
here, living on this pond, thislake, for nine years. My kids
were three and five years old,and life was perfect. I guess
you could call it pictureperfect. We're not rich where
you know, we deal with our fairshare of challenges, but life
was perfect because I hadeverybody I loved around me, and
(24:01):
I was over at his house rightafter July 4 holiday, where we
have a big party every year. Andwe noticed in July 4, he was a
little quiet. A couple peoplecame to the house and his dog
was losing their mind barking,and he didn't get up from the
couch to, like, quieter down orget he just kind of sat on the
couch. It seemed weird to me,but looking back, it was, it was
probably the first symptom thatI saw a couple days after the
(24:24):
fourth I was over there helpingclean the yard. Had a big
backpack blower on, and it'sloud, and a new neighbor just
moved in across the street. Iturn off the blower. We walk
across the street, my dad and I,and we're having a conversation,
introducing ourselves, and mydad paused in his sentence,
talking to this neighbor, and itwas an awkward pause. It was
just you know when you when youknow someone, and you know their
(24:45):
their tone and their cadence andtheir speech, when there's a
pause like that for no apparentreason, it something was weird.
And we said our goodbyes. I wenthome, and that night, I called
him, Rob, sitting right at thisdesk, and I called him. On my
cell, and I was like, Hey, youfeeling okay? And he said, Yeah,
I'm fine. I said, Okay. I hungup the phone. I called him two
(25:07):
seconds later, I redialed, and Isaid, Yeah, I know you just said
you're fine, but are you feelingokay, dad? And he paused for a
moment. He said, I'm confused,and that's not him, that was not
him, that was not normal. Andthat's when I knew something
seriously wrong. And I hopedthat that seriously wrong thing
was something not serious. Ihoped he was dehydrated. The man
(25:31):
only drank coffee and, like,vodka. So it's like he never
drank water. The man never drankwater, yeah, just
coffee. And I was like, I'llbring over Gatorade in the
morning and we'll figure someelectrolytes. Walk it off. Yeah,
Mike, you gotta maybe this isthe sign dad that you got us
finally start drinking water andand it, it was much worse than
(25:54):
that.
Natalie (25:55):
Yeah, so who initiated doctor's visit you or your dad?
Me?
Unknown (26:01):
Immediately. I said, we need to see your primary care
doctor. Let's just something'sweird, you know? And we hoped,
we googled everything, right? Sowe're hoping us probably his
overactive thyroid, his sisterhad overactive thyroid, so,
like, it's probably, it'sprobably something like that. So
there's no urgency. We did notthink there was urgency, yeah,
well, Natalie and JJ in the timethat we made the appointment,
(26:25):
and the seven or eight daysbetween getting to see his
primary care doctor, he haddifficulty forming words. He had
difficulty finding the words hewanted to say. So now we're
like, what? What the hell isthis? Yeah, and I'd say dad, and
he was very quiet. Mom thoughthe was, she was he was mad at
(26:46):
her, by the way, when I sat downon the next day, when I said, we
need to go see the doctor, Isaid, Mom, dad feels confused,
and I want you to know that weyou should know that something,
something's off. He's notfeeling good. And have you
noticed anything? And she said,I just, I just thought he was
pissed off at me. So you know,when you live together for 50,
however many years, you get usedto your spouse, right? But then
(27:10):
you have tiffs. And she justthought he was in a bad mood for
a couple days, which also wouldis not normal and wouldn't have
been normal for my dad, becausemy dad, I in the 37 years I knew
him. I never met the man. Inever saw him in a bad mood.
Never in a bad mood. He wasnever He was quiet but and calm.
He's never in a bad mood. So inthat time, I could ask him, Hey,
(27:32):
Dad, where, where do you live?
He's like, I live in RhodeIsland. I'm like, but where did
you grow up? And he could, hepause, and he couldn't get the
words New York out. And as youknow, and as your listeners now
know we're all from New York.
We're lifelong New Yorkers. Heknows he's from New York, and
I'd say, Dad, do you know you'refrom New York? And he'd say,
Yeah, I mean, but you can't sayit. And he'd look at me, and he
(27:53):
kind of go, Huh, wow, somethingwas wrong.
JJ (27:57):
Yeah, I want you to, because I want you to tell me about the
diagnosis. I want you to tell methe day kind of about diagnosis
and what they tell you theprognosis is for
Unknown (28:10):
him. Yeah, well, I'll start the day before prognosis,
which is when we had the CTscan. We had gotten to see his
primary care doctor. Theythought maybe stroke. We could
have been a lot of differentthings. He sends him for a CT
scan. We come back home again.
We're sitting in this office.
He's sitting right here next tome, and I am filling out a form
to have him go see aneurologist. And the doctor,
(28:32):
primary care doctor, calls me onmy cell, and he said, Hey, you
don't need to see a neurologist.
You need to see a neurosurgeon.
We see something on this CATscan, and it could be it looks
like a mass of some kind, butthe doctor, the primary Kristen,
is very careful to say it couldbe a shadow, could be nothing,
but we see something, and youreally need to see a
(28:53):
neurosurgeon and I, andimmediately, now he's sitting
right next to me and he's onspeakerphone. My dad's right
next to me. My dad was the verycalm, gentle man and but he had
anxiety. He'd get anxious aboutthe most random thing. I mean,
if he didn't know where abathroom was, he was like, I
don't know if I'm gonna, I don'twant to go to that restaurant,
(29:13):
and I'm like, but there's arestroom and it's got a single
stall. If I tell him it had asingle stall, he felt better. So
he had funny little, you know,anxiety. Well, well, now we,
you're, you were just toldthere's a mass potentially on
your brain. And I look at him,and he looks at me, and he, he
has no reaction to thiswhatsoever. And I'm like, Dad,
I'm gonna, I'm gonna make a newI'm gonna make a different plan.
(29:36):
We don't need to do this form,you know? I'm gonna do, I'm
gonna bring you home, and I'mgonna make a call and get a gene
into neurosurgeon. Okay, andhe's like, because now we're
maybe, like, 14 days out fromthe first symptom. Now he's not
saying much at all. He's reallyhaving trouble finding words.
And so, JJ, the next day I'm into see a neurosurgeon, I got on
(29:56):
the phone immediately, and Iblew through any receptionist. I
blew through everybody. And I'mlike, I need to see a
neurosurgeon today, and it wasabout three o'clock in the
afternoon. They're like, we donot have anything today, but I
can get you in tomorrow. Andmaybe that's because we live in
a tiny state, but we got luckyand we got in the next day, and
that's where his tail end ofcovid. We're all wearing masks
(30:18):
in the office. I'm there with mymom my dad were surrounded by a
lot of doctors and white coats,three doctors, the neurosurgeon,
the radiation oncologist, andthe and the somebody else was in
the room, and they tell us, webelieve what this is, is brain
cancer. We believe this is braincancer, glioma of some kind. It
(30:40):
could be what they callglioblastoma. These words are
hitting me, and I don't evenknow what the hell these words
mean. I've never heard of aglioblastoma before. I've heard
of brain cancer, and that wasthe worst possible thing this
could be, of anything that thiscould have been. This is the
this is potentially absoluteworst, right? And, and, and,
(31:03):
excuse me. And the doctor isapologizing. The radiation
oncologist is actually, isactually saying, so I'm so
sorry, in the in the discussion,and I am welling up with tears
because I'm thinking, Why areyou sorry? I thought you're
because you're gonna fix him.
We're gonna fix this. You'regonna fix this. He's not he's my
dad. He's not going anywhere.
(31:24):
Yeah, don't be sorry. And and soI was really confused and
scared. I was afraid. I wasreally afraid that
day was your dad's reaction,stone cold. It was as if you if
it was, if you told him that themail wasn't delivered. He was
the tumor, and his brain wasaffecting his comprehension, so
much so at this point that he heactually fell asleep in the
(31:49):
office. He started to doze offduring the discussion,
Natalie (31:54):
wow, and he's in it.
And if he's 55 when he retired,he's been there about nine
years, so he's not what 65 ifthat
Unknown (32:01):
he's 69 Yeah, cuz they retired, lived it before they
moved up. They were still in NewYork for a couple years. But
then, yeah, he so he's 69 yearsold. We had just celebrated his
birthday on May 29 and he wasfine on May 29 and on father's
day in June, when we took theboat out to go fishing with my
son, he was fine. He's he wasfine. And I said, This can't be.
(32:21):
He is a healthy guy. He's neverhad any problem in his life.
He's never been unhealthy. Thiscan't be
Natalie (32:28):
so when Wait, hold that thought, Jay, we have to take a
break and we'll be right
Unknown (32:32):
back. 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 (32:47):
All right, everybody. We are here with Chris Schuler, and
what he just said was, when hewas standing there and the
office, sitting there in theoffice, and they got the
diagnosis, he had all thesedoctors saying they were sorry,
and he didn't know why they weresorry. Why are you apologizing?
You're here to fix my dad. Myquestion, Kristen, for you is,
when did it flip? When did yousay, Okay, I have to be strong
(33:10):
for my dad. Where did it? Didus? Did it? Did it flip for you?
And then you say, did they giveyou a prognosis as far as a time
at some point? And you say, Igotta, I gotta take advantage of
this time
Unknown (33:22):
I walked out of the room, I asked the doctor to
please come out in the room without of the into the hallway with
me to ask what this meant. Iwanted to hear this unfiltered.
And he said, It's not good.
These are not good tumors. Butif we can get your dad five to
seven years, we will, we'll doeverything we can. And I said,
Okay, five to seven years is adifferent story, because the
(33:42):
tone was scary in there.
However, then we get in the carhome, didn't speak much. Nobody
said much, because my dad can'treally say much, and my mom is,
I think, heartbroken, trying tocomprehend what they just
(34:03):
explained to us. You know,because I hate these offices, I
hate the way these this news isdelivered. I had a nice
conversation with a neurosurgeonrecently about how we deliver
this news and and he hecouldn't, I mean, he's a smart
guy, much more educated than Iam, and after I explained the
experience and what I wentthrough, he said, I'd never
thought about it this way thatyou're describing. It's just,
(34:25):
it's just not it's cold, it'sit's and there's no good room to
hear that. By the way, there'snowhere in the world that's
going to make this softer orbetter, but there's probably
better resources and bettertools to equip patients and
caregivers as they're leavingthe room, instead of saying, if
you want to check out at thedesk and schedule your next
point. Would that be
Natalie (34:43):
great? Yeah, and don't preach your copay, in case you
didn't do that. And
Unknown (34:46):
don't forget the copay.
And and then you're dealing witha receptionist who's dealing
with 10 other people. It's justa slop. It's sloppy. So on the
way home, I'm thinking a lot.
I'm thinking about the numberone pervasive thought is, um, is
my dad not being in my. Life, Mydad dying, I never considered or
thought about the mortality ofmy parents. Yeah, I don't know
(35:09):
why. I just never thought aboutit. And to me, they were young,
they were healthy, and maybethat's why, but, and despite my
mom being a two time breastcancer survivor, she faced it,
she fought it, we did well, andeven mortality date wasn't
wasn't involved with that, but Ithink his lack of speech, his
sudden symptoms, were sounnerving and frightening, my
(35:30):
brain went in a lot of differentdirections on that drive home,
and after I dropped them off, Icried hysterically. I was
absolutely I was I was soafraid. It's fear that I've
never felt before.
Natalie (35:44):
I want to talk about, I want to get into care, because
you get into care and you do alot of care. Actually, we talked
about that. And so at thispoint, I can tell you, my brain
completely shifted into almostlike developing a crisis plan.
All right, so this is what we'regoing to do. I'm used to taking
the lead. This is what we're andthis is and we started doing
(36:06):
this and this and this and this,and these are all the things,
all the appointments that wehave to go to, and that you've
got children, you have your job.
What are the thoughts goingthrough about, how am I going to
do this? Because you're the onlychild, and you're and you're
super tight, and what's thethought process behind that? And
what, how do you start preparingbecause you're you're now kind
(36:27):
of almost and people talk aboutcancer being war, you're at war.
Unknown (36:32):
Yeah, after I finished crying, one of the first places
I went was my church, and Idropped in a pew, and I just
cried because I needed to crysomewhere else. I needed to get
rid of and pray, and I asked Godfor a whole lot of things that
he couldn't deliver. And Iprayed and I cried, and I
thought, well, what are we goingto do? What? How am I going to
(36:54):
do this? And and then giving thenews to family members who had a
million questions everybody. Itwas as if the spotlight was
entirely on me. I knew what Iwanted to do, and this was
immediate. I knew that I wouldhandle anything with doctors,
anything with clinical trials,anything with research, off
(37:15):
label drugs, nutrition, holisticmedicine. I will do all of that.
I will find it because I need tokeep my dad alive. This is the
most important job I now have.
It's more important thananything else in my life, and
I'm a dad, so I've got to I'mlucky to have a wonderful wife,
and even she knew you need to dowhat you have to do. And I knew
these were the things that I hadto do, because there's nothing
(37:37):
more important ever, that's everthis is the monumental moment in
my life, and so that's what Ihad to do mentally, was to say I
need to I need to be in fullmode to keep you alive. I never
looked at myself as like I needto figure out how to be a
caregiver. I looked at myselflike I need to keep you alive
because I'm your son and you'remy dad.
Natalie (37:59):
That's it. That's a very I don't know that we've
ever had anyone say it sosuccinctly about this is what my
immediate thoughts were and howI was going to attach it. And
you're right. None of us everthink, well, gosh, now I'm a
caregiver. This is going tosuck, and we don't. It's really
more of like, what are thethings I need to do? Because
you're my person, and I loveyou, and that's not the case for
(38:20):
everybody. Let's just be reallyclear. I always qualify that
with sometimes people care forpeople they don't like and so
and that happens, and thatdoesn't diminish the effort that
you put into place, but in thiscase, you're having to say to
your wife, okay? And she says,keep going. I'll be here. I'm
(38:40):
here to support you. So how doesyour life change?
Unknown (38:44):
Well, everything changed. I was lucky. I was
really lucky, in a way, that itwas the tail end of covid for
for at least restrictions on inperson gatherings, because I I
was working remotely. And when Icalled my my boss, she she said,
I mean, I think she just says,very simply, just do what you
have to do. Don't worry aboutanything. Do what you have to
(39:06):
do. So I was able to continueworking and continue doing my
job, and I was in a leadershiprole, and I had direct reports,
but I was able, and I was ableto trust them, because I hired
the right people trust them todo a great job. Well, I had to
do what I had to do. So I willbe forever indebted to miss
Kimberly dumpson, who was my whowas the Vice President of
(39:26):
Development at the time at thecollege I was working at. We
forever indebted to her forallowing me the space to be the
caregiver that I had to be.
Natalie (39:36):
And so you did more than just doctor's appointments,
though, because your dad got toa point where he would only
allow for certain tasks to becompleted by you, and we talked
about that, because this is someof the challenges for
caregivers, when the person onlywants one person, and that can
be an opportunity for burnoutand other feelings and things
(39:59):
like that. Us talk about whatthat looked like for you.
Unknown (40:02):
Yeah, yeah. I mean, I went full on. I wanted I wanted
my mom, who was also my dad'scaregiver, who lives with my
dad. I wanted her to meet hisneeds in only the only way a
spouse could. I wanted her tolove him. I wanted them to have
the relationship they had. I didnot want her to clean him up in
the bathroom. I didn't want herand I and she could do those
(40:24):
things, and she she probably didat times if I wasn't there, but
I was there almost 24/7 I did. Iwanted her to, I wanted to ease
it. I wanted to ease this onher, because I Googled this
disease, and I've realized thisis bad news, and I don't think
she ever Googled this. She had,she just, she just took it one
day at a time, and I wanted to,I wanted to be the buffer, like
(40:46):
I wanted everything to hit me.
You've seen probably that thatmeme or that image online of it,
it's a picture of, like a dad ora mom, and they're holding a
shield and there's arrows comingat them, and their kid is
underneath them. That's, that'sthe visual representation of
what my role of a caregiver was.
I was protecting him in any waythat I could, and at this point
(41:07):
now, he has almost lost theability to speak. After biopsy,
he couldn't really talk anymore.
So So I now also have tointerpret as his son and as his
caregiver. How do I meet yourneeds, and you can't tell me?
How? How do I know you'rehungry? How do I know you have
to go to the bathroom? How do Iknow you are cold or that you
(41:27):
just went to the bathroom? Howdo I know what you want to eat?
How do I know if you're in pain?
How do I know if you're scared?
I want to meet. I want I'mtrying to meet. These are the
things keeping me up at night.
Is he afraid? How do I fix thattomorrow? How do I how do I make
(41:48):
him feel unafraid? Because we'renot keeping anything from him.
He. We're telling him what'shappening. Before he lost the
ability to speak, he and it washard to get this sentence out,
but we talked to him about thethe standard of care and brain
cancer, which sucks, but wetalked about what the standard
of care was and and we'd begoing through chemo and
radiation and not and he said,will this help me get my words
(42:09):
back? And that was one of thelast sentences he ever spoke
freely. And I, I said, yeah, Ihope so. That's the goal. That's
the plan. Can do everything wecan, dad. And so there's so
much, not only physical aspectof caregiving, but the mental
aspect of caregiving was soheavy. And I, and you said
(42:32):
burnout before, I did not lookat myself. I did not think about
myself at all in this duringthis time. And that is not good.
And I'll say that, that ifthere's a caregiver listening,
which I'm sure there is, it isnot below you to accept help,
and it is not below you or wrongto take time for yourself if you
(42:56):
can, because I couldn't, so Ididn't, but it, it's Oh, it's
okay if you, if you have to, sothat you can be the caregiver
that you need to be and want tobe.
Natalie (43:08):
You know, it's funny, because it sounds like you
really didn't give yourself thespace or permission to be able
to take that time. I'd sayrespectfully, I think there
probably was a person that mightbe able to help you with some of
the tasks. I understand some ofthe things we're going sure and
but I think for me, it was aboutcontrol in a situation that I
had no control over, so I wouldgrasp on to anything I could
(43:32):
control. And so I hear it feelsa little bit like that. I relate
to that feeling of I must dothis. I'm the only person who
can do this for Jason. I'm theonly person who can talk to the
insurance companies and crawl uptheir rear or the nurses or the
whatever about what he needs.
And I think that, you know,without having my sisters and
some very close friends to talkthrough that and to be able to
(43:56):
kind of release that pressure onmyself to say I feel like I'm
failing. I don't feel like I'mdoing enough. I wish I could do
something different and have agood snot fest every now and
then. That's a lot to hold in. Imean, how you're sleeping?
You're eating, like seeing thekid?
Unknown (44:15):
Yeah, I'm seeing my children. But no, I'm not really
eating well. And my wife was mymy rock, and at night, every
night, at the end of the night,because I would be at my dad's
house. I'd work from his house.
I'd be at I'd get my kids. Thiswas what my days look like. I
get my kids up and ready and outthe door, school, whatever,
wherever they had to go. I go tomy mom and dad's house
immediately, and I would get himout of bed, cleaned up bathroom,
(44:35):
whatever we needed to do. Then,you know, my mom would do, you
know the let's make lunch orbreakfast, coffee, whatever, and
I'm in the house all day long,helping him when I can. I am
there until dinner time. We gethim set up for dinner. Then I
run home, and I have dinner withmy kids and my wife and my
family, and then we get the kidsto bed at eight o'clock, and at
(44:55):
830 I am back out the door overthere, getting. Him up, ready to
for bed and cared for. I laynext to him every night, and I
rub his head until he fallsasleep. And that is my routine,
and it was important for me todo that and to be there. I would
not have chosen any other way toshow up for him, and I'm glad I
(45:21):
took that time. Glad. I really,I'm really glad I took that time
to do that with him and spendthat time, because time is all
we have, you know, and I hate toget emotional, but, but it's not
money, it's not things, it istime with the people we love.
And my knew that my time wasticking, and it was ticking fast
with this disease. So so thatwas, that was your routine. So
(45:46):
to come back to your point ofburnout, I was not eating well.
At one point we had a visitingnurse come to the house, taking
his vitals, because we hadvisiting nurses, occupational
therapy, physical therapy,speech therapy with everybody.
And at one point, this nursesays to me, I'm taking your
vitals next, sweetie. And I'mlike, I'm fine. You don't need
to take my vitals. And my heartis racing even saying this,
(46:08):
because it brings me right backthere, and she takes my vitals.
And on the way, as I walk herout the door, she said, Honey,
I'd like you to go to thenearest walk in or hospital your
or call your doctor, becauseyour blood pressure is almost at
stroke level and not I'm anEagle Scout, I but I did not
remember my first day of meritbadge of what a good blood
pressure was and and she gave methe numbers. I don't remember
what they were, but she said,You need to go to a doctor now.
(46:29):
And I called my doctor, and I'mso fortunate to have a great
doctor. I got I called hisoffice, and they said, Come
right in. And I drove right overthere. I'm in the parking lot,
and there was an ambulancethere, somebody was being
transported out, and all of asudden, I am, I think I feel
like I'm gonna die in theparking lot. I was sweating. My
heart was racing. I have neverhad the kind of anxiety I'd ever
(46:53):
had, like I did that parkinglot. I thought I was, I thought
I was gonna die. And then now myin my head, the thoughts are,
wow, this is it. Who's gonnawho's gonna take care of him
now, who's gonna take care of mykids? I'm gonna die in this
frickin parking lot right now.
This is it. And I walk in andthey can tell I'm a little shook
up, and they connect me to somestuff in there, and they calm me
(47:15):
down a little bit. And I couldcome and my doctors like, You,
you, you have a lot going on.
This is not easy. And I youneed, we need, I can help you.
We need to help you. And theyput me on. I don't know what the
pill was. Took a little bluepill. I forget what it was, but
he's like, this should take theedge off while you continue
caregiving. And I was like,Sure, give it to me, because I
(47:36):
didn't care what it was. Ididn't look at the label or the
bottle. I'm just like, yeah,whatever's gonna help me help
him. And that's what caregiversrun into and and that's not
good. But I'll also say I got, Ihad advice from a lot of people,
and a lot of people would say,How are you doing? How are you
Well, I talked to my one friendwho was a Marine, and I've
shared this often, and I said tohim early on in my dad's
(48:00):
illness, what was going on, andhe gave me very different advice
than anybody else has ever givenme. And it may not be the best
advice, but I will share it,because it was the advice that I
needed at the time. He said, Youneed to be a rock right now for
your family. You can cry later,but you need to take care of
everything right now. You needto do it. You need to show up.
You need to show up and put upwith it. At first I was like,
(48:21):
Fu, like, What are you saying tome? I was almost
Natalie (48:26):
like, total Marine, though that's a marine mindset,
though that is a marine that isa marine mindset, like, put
yourself aside and get to themission, and whatever the end
result is that you're trying toseek and you sacrifice no matter
what. Get it,
Unknown (48:40):
and that's why they are incredible, and that's why we
are we have the freedoms we haveand the safety we have, because
there are people that think likethat. So after he said that, I
started to think, you know, he'she's probably right. But he also
said to me, and if you're goingto pray to God, don't pray for
what he can't give you. You prayfor what he can give you. And
that flipped my mindset of, Ineed to pray for strength. Then
(49:02):
I need to be strong. If I askhim for anything, I'm not going
to ask that he takes thisdisease away from my dad, which
is really what I want. I wanthim to live and survive. But I I
heard him loud and clear and andso that that advice also helped
me. It really did. It helped mesurvive this, this entire six
month ordeal. Wow.
Natalie (49:24):
So your dad lived for six months after his diagnosis.
Unknown (49:29):
Six months and six months goes by in the blink of
an eye in our lives, doesn't it?
Yeah, six months is nothing. Itwas the longest six months of my
life, and it has become the sixmonths that transformed me into
who I am today. Because afterthat, you can't be you can't be
who you were before, no, afteran experience like that, and
(49:53):
Kristen, you both know that
Natalie (49:57):
you're not the same.
JJ (49:59):
Go ahead, Jack. You. It so, yeah, so that's what I want to
know, Kristen, because you, youwrote again, some beautiful
things about that. Tell me whoyou are today. Tell us in our
audience how it changed you andwhat you have become.
Unknown (50:13):
This morning, I was looking for a shirt to wear, and
my daughter was getting readyfor school, and I said, I'll be
right there. I got to get upshirt, and I was grabbing a
college shirt, and she she gaveme a sweatshirt, and she's like,
wear this. And it said, and itsaid, Dad. Now she sees this
sweatshirt as it says, Dad,because I'm her dad. That's
right, my wife gave me thissweatshirt Father's Day a couple
(50:35):
of years ago, and when I saw it,and it was a Father's Day gift
for me as a dad. When I sawthis, I saw my dad, yeah, and so
who I am today, I think, is whohe would have wanted me to be,
which is dad. I am dad, firstand foremost and always. It's
(50:58):
not my job. I could care less.
It's not any of those things.
It's it is the thing I take mostseriously in my life, as being a
father. That's who I am.
Natalie (51:09):
I love that. I love that. And it just comes back
from the inner workings and theweaving of the love and support
and that you had from childhoodand that natural, like you were
clearly meant to be exactlywhere you're at, and everything
that's happened, no matter howhard it is, and the short time
that you feel like you've beenshort changed. It's all these
(51:32):
things because you've done somuch after to advocate on behalf
of others. And I think that'sreally where people have to
decide, how are you going totake this experience and what
are you going to do with it? Andeverybody does something a
little different with it. Imean, we started a podcast like,
like, we're like, we had neverlistened to a podcast, and so
(51:55):
and we think, How can we tellother people they're not alone?
And I think about the work thatyou're doing to advocate. And
we've had other friends likeKristen introduced me to other
folks like Shannon trap Haganwas on and Kelsey Yeager, who
was on, if you haven't listenedto their podcast, again, great
people. And this is a communitythat is alarmingly small, if you
(52:18):
think about it from the worldstandpoint, it's a small
community, and we're all tryingto use our shared or collective
voices to be able to makeeffective change for others who
don't know what's coming. Right?
That's what I would say. And Ithink your your thoughts on time
is the true thing that you don'tlike. This is the true
commodity. Time is what youwant, and you want to hold on
(52:41):
to, and how do you use it? Well,I know we're at, we're well past
our time. I've said this foreveryone that we've done. I'm
like, Oh, we're well past ourtime. We're fine. So, you know,
I want to go into, I want to gointo sister questions. So Jay JJ
has always got her head down,jotting down some notes, because
she's got very meaningful sisterquestions. So J Do you want to
(53:03):
start with a sister
JJ (53:05):
question? Well, I'm so many like moments there. When you
came on, I noticed your dadshirt. First of all, Kristen, it
hit me, and I was like, and Ialways have my question, but I
always have a comment as well.
In the beginning, we talkedabout your adoption, and you
said they chose you, but I guessmy thought in the whole podcast
is that they chose you, but youwere chosen for them. Oh, I
(53:26):
guess that's my that is mythought. My takeaway from it is
that you were absolutely chosenfor your family. Thank you. My
thought, my happy, my funnythought is, there's so much love
and laughter with your family,and I feel like that continues
to carry tell me something thatin your memories, that you will
that brightens you, that makesyou laugh about your dad.
Unknown (53:51):
Oh, my God, my father was the most kind, gentle man
and funny. He was like the ChevyChase of his family. He was
hysterical. We talk aboutcaregiving, and this is so
messed up. This is I'm going toshare the story because it's so
messed up. But I think yourlisteners can can relate to
this. My dad had this greatstory of he was in the shower
(54:12):
with my mother, showering herwhen she was recovering from a
surgery that she had had after acar accident, and she was so,
like, the medicine made her sotired that she started fall
asleep in the shower. She'sstanding up, and so he is like,
I'm in the shower with yourmother, and she starts to fall
(54:33):
asleep, and I'm holding this wetfish who's falling out of my
arms, and she's she's gonna hither head, she's gonna hurt
herself, and he's like, Yeah, Iknow you're sleeping. Stop
sleeping, right? And it'shysterical and and to find humor
in times like that. And I didthe same thing with him. So I
would change at night, I wouldchange his clothes, and I mean,
(54:55):
he's totally nude, and he didn'tcare, because I'm his son, and
we're just whatever. So. Like,I've never shared this out loud,
but when you're when you aresedentary, you get rashes,
right? We know this. So he hadrashes, you know, around his
groin and and I would laugh withhim, and I'm like, Dad, I'll do
everything for you, but I'm notdoing that. I'm calling mom in
(55:17):
for that. Okay? So he would giveme a little smirk. So mom would
come in and she'd put the lotionon her hand and and start, well,
every time she did it, I wouldput on some terrible song, okay?
I would put on I'm too sexy forwhatever. I would put on the
most ridiculous song. And Iwould get up on the Ottoman at
(55:38):
the end of his bed while she'sputting the lotion on, and I
would dance, and he would laugh.
I mean, he would have that andhe couldn't talk anymore, but he
was hysterical. And my mom waslike, pissed. She was like, You
are the two dumbest idiots I'veever met. And this is how this
went, every time it happened.
And I'll tell you what itreminds it brought laughter into
(56:02):
the worst possible situation wecould find. But I'd be damned if
I wasn't gonna do everything Icould to remind him of who we
are. We are alive, yeah, and,and we have to find, we have to
find joy, and that's what wefound. I mean, it's ridiculous.
Natalie (56:22):
No, I will tell you, I feel the same way, you know, and
for us, it was bagels in NewYork, even though Jason had, I
mean, the one thing he probablyshouldn't have eaten was bagels,
because Jason had burned upsalivary glands. He had no
saliva and so, but we're takingpictures with bagels, like we're
we're clinking glasses ofchampagne. We're like, Oh, we're
(56:43):
eating bagels in New York City.
Look at us living our bestlives. We just so happen to be
having cancer treatments. And soit's it's finding, I think this
comes back to and this is astory. It's not letting cancer
take over our lives, and it justis a part of our lives, and it's
not defining who we are. It is apiece of our story, and we can
(57:03):
still find joy. We can stillfind it may be hard to find, but
darn it, do keep looking,because there are those moments
that are glimmers that willallow you to say, I can look
back at pictures. I gotta loveFacebook for the memories, and
it comes back up and you'relike, I knew what I was doing,
but that was a funny moment.
(57:23):
Like, those were moments thatyou could have, or moments that
you're like, I was at peace inthat moment, yeah, and I was
able to achieve it for even asecond. I think that's so
important.
Unknown (57:35):
Well, we learned so much. We learned so much from
these experiences and and sadlywhen we are diagnosed. And for
cancer patients who arelistening when you're diagnosed,
it's this rude awakening of whatmatters in your life and and
what a gift to me that the rudeawakening for my father became
this clear, that it offeredclarity of what matters and that
(57:58):
it's joy. It is joy and kindnessand love. Those are the things
that matter and and I could havelived the rest of my life never
having learning that learn thatlesson, and there are people who
we know never learned thatlesson. And so to come away from
these difficult things, it'sit's heavy, but it's also a
reason why we can't let thosethings, those very difficult
(58:20):
things, in our lives. We can'tlet those things be the the
catalyst to finding joy. We haveto find it ourselves. It's
there, and we have to find
Natalie (58:31):
it. That's the money, friend. That's the money. People
always wonder what the secretsauce is to life, and I think it
tends to be when you have this,this critical event that you
don't plan for. It's alwayssomething not planned for, and
and if you don't take it andinternalize it, you'll it's easy
to slip back into old patterns.
That's the one thing is it'seasy to slip back into old
(58:53):
patterns. So you have to fightto stay present, and fight to
for what and to remember, andthat's the painful part. If you
really think about it, it'spainful to remember about that
time, but then it reminds you,what are my priorities? And work
ain't number one, and I have toremember that. You know, Chris,
thanks so much for being with usand we could. You're the
(59:18):
honorary brother. You are thebrother we always wanted. You
have two new sisters, and eventhe baby would be your sister.
She would love you. But FYI, sixone, and so yeah, the baby, six
one. I'm only 510 JJ is theshort one. But you know, thank
you so much for coming on andsharing just such words of
wisdom and being so authenticand open about the good, the bad
(59:42):
and the completely, you can'tmake this up, but dancing at the
end of the bed to I'm too sexyis really going to make the rest
of my day, the rest of my day,because you need to watch the
YouTube video so you can seeChris, so you can visual. Lies.
Kristen going, I am too sexy forridiculous.
Unknown (01:00:05):
It's the ridiculous chaos of of the the craziness of
what life is and what grief isand what love is. All these
things are complicated, but inthe end, they're
Natalie (01:00:16):
beautiful. Yeah, they are beautiful. They are truly
are. Jay, will you take us out?
JJ (01:00:22):
I will, guys, thanks for listening, and until we confess
again, we'll see you next time.
Natalie (01:00:29):
All right, bye, bye.
Well, friends, that's a wrap onthis week's confession again.
Thank you so much for listening.
But before you go, please take amoment to leave us a review and
tell your friends about theconfessions podcast. Don't
forget to visit our website tosign up for our newsletter.
(01:00:49):
You'll also find a videorecording of all of our episodes
on the confessions website andour YouTube channel. Don't
worry, all the details areincluded in the show notes
below. We'll see you nextTuesday, when we come together
to confess again. Till then,take care of you. Okay, let's
(01:01:10):
talk disclaimers. You may besurprised to find out, but we
are not medical professionalsand are not providing any
medical advice. If you have anymedical questions, we recommend
that you talk with a medicalprofessional of your choice. As
always, my sisters and I, atConfessions of a reluctant
caregiver, have taken care inselecting the speakers, but the
(01:01:33):
opinions of our speakers aretheirs alone. The views and
opinions stated in this podcastare solely those of the
contributors, and notnecessarily those of our
distributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
care LLC. Thank you forlistening to The Confessions of
(01:01:55):
a reluctant caregiver podcast.
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