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The cost & courage of caring - stories that spark resilience.
When someone you love has cancer,
so much of life can become about
waiting.
Charlotte Biala has spent more
than a decade caring for her
husband through cancer.
Charlotte and I talk about what
it's like when the waiting feels
endless,
how to stay connected to yourself
and your partner,
and ways to find small pieces of
solid ground along the way.
I'm Dr.
Mark Ropolesky, and this is The
Caregiver's Podcast.
Charlotte, thank you for being
here.
Before we begin, please follow or
subscribe to The Caregiver's
Podcast
wherever you're listening or
watching.
It's free, and it helps more
caregivers find the show.
Charlotte, welcome to The
Caregiver's Podcast.
I'm so happy you're here today.
Thank you, Mark, for having me.
I'm looking forward to our
discussion and the tradition of
the podcast.
We're going to jump right in,
Charlotte.
When your husband was first
diagnosed,
did you realize right away that
you were becoming a caregiver,
or did that take some time to sort
of sink in?
No, absolutely not.
There wasn't any time to have that
moment to understand that my role
has changed
or to identify as anything other
than trying to hold it all
together all at the same time.
How did that happen so fast?
Me not understanding that I was a
caregiver.
Or just it seems like it was a
very quick realization.
The pace must have been huge.
Yeah.
He was diagnosed with thyroid
cancer within a week.
He had this lump on his neck that,
of course, he went to urgent care,
and they wanted to give him
steroids and just something.
And my gut said, absolutely not.
We need to see a doctor.
Of course, it was on the weekend.
So that next week, he saw someone,
and they said, no, we need a
biopsy.
And it didn't take that long.
So it was a matter of maybe three
weeks in between him having that
symptom
and being sent to an
endocrinologist to have a biopsy
that by probably total a month and
a half before surgery.
So it was really quick.
And from the very start, it was
just, okay, you know, what can we
do?
What information can we find out?
How can we wrap our heads around
what is happening in a way that we
can try to
mitigate any issues that we could
sidestep by having a better
understanding
of what we were getting into?
And this was before a lot of, you
know, almost 14 years ago.
There wasn't as much information
out there.
You know, I couldn't Google as
quickly or as easily as I could
now for anything.
So Charlotte, if you've never
looked after someone with cancer,
what's the part you just don't
understand until you're in it?
Everybody is going to expect you
to figure out how to do all the
things.
And all the things are things that
no normal person would have any
idea or training to be
able to do.
You know, I remember when he left
the hospital the first time after
his total thyroidectomy,
we had, I had maybe a couple of
seconds of a nurse showing me how
to strip a drain.
There was no question like, are
you okay with seeing the inside of
your husband's body coming
out of a tube?
There was nothing that kind of
like took a second or a pause to
say, are you all right with this?
What questions do you have?
It was just, this is how we do it.
I'm going to do it before you guys
leave.
You can watch.
And then here's a sheet of paper
and, um, you know, wound care, you
know, the things
that happened at the very
beginning were things that were,
that were nurse, nurses were doing
from the very start.
And so I was sent home with the,
you know, the bag full of things
with the bandages.
And, um, we just had to figure out
how to do what we needed to do as
we stumbled along.
There wasn't really a lot of
direction.
And I think it was just because
the two of us were already a team
in life to begin with
that as we were trying to figure
everything out, you know, some of
it was bonding in a different,
in a, in a different way.
Um, there's some things that we
can laugh about now that I was
like crying about when
it was happening, like me calling
the nurse and saying, wait, this
place where the tube
came out, um, for the drain, like,
should I be able to see inside
layers of his body?
And they're like, yeah, it's fine.
You know, there are things like
that, that there's no way that you
can prepare yourself for.
It's interesting.
I love having like a backup team.
This is so awesome.
So we, we, we've, we've tried all
kinds, we're trying some new
things.
We've had segments too, where we
have, uh, a real time question and
answer from our illustrious
production team as well, but we've
tried different things.
All right.
But I think that's, and I think
there is, I mean, there's, there's
a couple of fertile points
that I wanted to, uh, touch on.
And I'll, I'll ask you one
question and I'll lead into what,
uh, to, uh, to what Fred said.
Sure.
Charlotte, it amazes me that
there's almost a casualness about,
oh yeah, you just need to
do that.
But someone who is thrown into
caregiving, it's such an intense
moment, has no place for
casualness
when they've never done this
before.
What does it feel like?
Does it almost feel like the
system's just throwing it all on
you because somehow they
figure, well, you'll figure it out
one way or another?
I don't think I had the bandwidth
to even notice any of that.
It's only now looking back over a
decade of all the things that
we've been through.
And I think that, um, with being a
caregiver, especially in the
beginning of a cancer diagnosis,
because that's my experience to be
able to speak from, um, I think it
was a, I felt like
it was a combination of, they are
so high level and they have done
things so often that they
can't figure out how to almost in
a way dumb it down for a person
who's just had a second
into the cancer world.
Um, and there are things that they
are, it's just normal for them,
right?
And so then there is a missed
opportunity of being able to
explain in plain language what
it is that we will go through,
what we are experiencing right
now, what to expect.
You know, for me going back, um,
from the hospital, like I've
learned to ask many different
times
in many different ways to
understand what to expect when I
get my husband home.
And, and there will even be, most
of the time there's a question,
when is, when is it an
emergency?
Like I need for you to tell me,
when is a fever too, too high?
When is bleeding too much?
When is whatever it is that we're
supposed to look for, um, at a
level where I know I need
to call because you've told me
this is where things become
dangerous.
And it's, if you can have the, the
foresight to be able to ask, ask
those questions, you
know, then you have a little bit
more information when you go in.
Um, I don't think there's, I've
never had any paperwork that's
like for the caregiver, for
the person who's had this surgery
or has had this illness, these are
things that you need
to know.
Um, and so, yeah, I think that I,
I don't know that I would say that
the nurses and the doctors
don't care.
I think that there hasn't been a
collective conversation to say,
okay, we're missing a
big piece of the care that we're
supposed to be giving.
Um, there's more than enough, um,
statistics and reports out there
to understand that caregivers
are who they need to make sure
that the cancer patient will
adhere to the treatment plan that
they've been given.
But there's a, a, a gap between
knowing that we're important and
showing us and giving
us the support that we need, um,
that will allow us to understand,
oh wait, this oncologist
really understands that, um, I, I
matter as much as I know that I
do.
And I think that's where the
problem is.
There's something in teaching
called, um, or in, you know,
performance metrics and skills
development where you develop
unconscious competence usually as
a product of repetition where you,
I'm actually don't need to really
think about the cognitive aspects
of an action or the delivery.
And in this case, maybe delivery
of care information because you've
done it so many times, but you
need to bring it into
consciousness to actually be able
to explain it to a caregiver in
terms
they understand and at a pace they
understand and actually
understanding and being aware of
and they're in a state of
cognitive overload.
And I think that's exactly what
you're describing.
It's no ill intent, but not an
awareness that you're hearing this
all for the first time.
Right.
Right.
Do you think then that's,
becoming a caregiver actually
becomes a diagnosis in itself?
I have always said that when a
person is diagnosed in a doctor's
office, someone,
I don't care who it is, a nurse, a
social worker that comes in, a
doctor,
that there is a protocol for the
person that is in the room with
them to at least sit them down
and say, and because of this
diagnosis, you need to understand
that you have a choice to make.
Because no one gives caregivers a
choice.
It is assumed that this is what
they're going to do.
If you happen to be the person
that's in there during the
diagnosis, almost always, the team
is going to think, all right,
well, this is their person.
They're the ones that are going to
be taking care of the things.
Right.
Whatever that relationship is,
because the caregiver patient
relationship, it differs with
everybody.
But for someone to be able to say,
this is a role that you're being
thrust into,
are you aware of what you're
unofficially saying yes to?
Do you want to do it?
And if so, here are the things
that you can expect.
Right.
So I don't know if a diagnosis is
the right word.
I know that that's a conversation
that started just recently, you
know, that has to do with
coding and insurance and health
care.
And quite honestly, caregivers
aren't going to the things that
they're supposed to be going
to anyway.
They're not going to their
doctor's appointments and they're
not taking care of themselves.
And that's because the system is
set up in a way that doesn't allow
them to have the ability
to believe that they are worthy of
taking care of themselves.
Right.
People will say, you need to make
sure that you go to your own
appointments because your
health is important if you want to
continue to take care of the
person you're caring for.
Everyone's telling caregivers what
they need to do, how they need to
take care of themselves.
But no one is helping them figure
out how to make that time or to
deal with the mindset
issues that get in the way that
stop them from being able to do
that.
That's totally dissonant.
And, you know, not to mention the
fact that when the time is needed
for that important conversation
between the health care
practitioner and the caregiver,
it's usually when the knock on the
door from the clinic manager says,
time's up, you need to move to
your next patient.
There's a lot of dynamics there
that really put the caregiver as a
witness to the process
at a significant disadvantage.
Was there a part of caregiving
that you really needed to learn on
the fly?
Something no one had prepared you
for?
All of it.
I mean, I'm still actively a
caregiver and there are still
things that I find surprising that
I'm still trying to figure out how
to navigate through because as
time goes on, caregiving
morphs and it changes and it
matures and it all depends on the
treatment and the projection
of the disease that your person
has or the disability or the
reason why you're a caregiver.
And I think that for me, wow, I
mean, there are just so many
things.
But what I think is the one thing
that really stopped me was
understanding that I had
completely
stopped doing anything for myself
and didn't actually realize or
understand that that had
happened.
Like it was invisible, even though
it was me living at the same time.
Charlotte, for after more than a
decade of caring for your husband
through cancer, how has it changed
you?
Oh my goodness.
I don't even remember who I was
before cancer.
I mean, it's just been so much.
And the problem is, is that over
long periods of time of being a
caregiver, the question always
is, are these changes or is this a
maturity or are these things that
would have happened
with age no matter what?
Like there's no way of really
understanding.
I think though, it makes it very
easy to identify what really
matters and what doesn't.
And when in the past, like there
were little things that were a big
deal, but then after having
cancer in the house, there, those
things just didn't matter anymore.
And I realize that sometimes when
I'm talking to people who are
complaining about something that
don't live in the cancer world,
I'm like, oh, I understand.
I understand why that's a big deal
for them, but also it really
highlights how some of the
little, some of the big things in
a regular world are little things
in the cancer world.
Something you just said really
struck me and it just made me
pause and almost, I think it
took my breath away when you said
when there's cancer in the house.
I've never heard anybody say that
before.
Yeah.
It's an extremely powerful image.
Yeah.
It's an uninvited guest.
Like it's, sometimes it hangs out.
Sometimes we make it disappear.
For us, especially for me, just in
my way of being able to understand
my world, personifying
cancer helps a lot because it's,
it separates because my husband
doesn't walk around talking
about how he is a cancer patient
or a cancer survivor.
He's a guy that has this thing
that every three to six months he
has to deal with.
So the way that we've kind of
accepted cancer into our lives, so
to speak, is a way where we,
we continue to hold on to our
agency, even though we know that
cancer has a lot of control over
our lives.
And I can imagine that the
diagnosis came as a shock on that
day so many years ago.
But at what point did the
shockwave settle and this all
became just everyday life?
Never.
Thyroid cancer or cancer long
term, for me, I equate it to being
on a plane.
And you get on and the pilot said,
you know, we get off and we've
made it through the takeoff.
And the pilot says, at some point,
we're going to have turbulence,
but I'm not going to be able
to tell you when.
And you're not going to know that
it's happening until you're
holding on to that armrest, trying
to save yourself from whatever
disaster you think is coming.
And I think that's the way it is
with living with cancer.
So we never, I don't think there's
ever a time where we've felt,
quote unquote, safe,
or that our lives could calm down.
It's that we're enjoying the time
where we're having a smooth flight
before there's a little
bit more turbulence coming up.
And the reason that we don't know
that it's going to happen is why
we try to stop anticipating
when it's going to show up.
You've talked about cancer
caregivers living scan to scan,
waiting for the next result.
Tell me about the tension during
the time in between.
What does that do to your life?
Yeah, it's, I clean a lot.
My coping mechanism is cleaning.
If there has been, let's say, you
know, we're in a three-month scan
cycle right now.
And so if there was something
concerning three months ago, then
the scans coming up, especially
a week or so before, they matter a
little bit more.
There's a lot more anxiety
attached to it.
And so it changes how the both of
us deal with normal life stress.
There is no way of any of us
saying to each other, it's all
right.
Don't worry until you have any
information.
Like there's no personal,
physical, emotional, mental way
for the two of us to say to each
other, you know, don't worry.
And so when people say it to us,
we're like, yeah, you have no idea
what it's like to experience
this scansiety.
And so, you know, it really,
that's the time where like cancer
kind of like creeps out of
the closet.
And it's like, oh, I'm going to,
I'm actually going to hang around
for the next two weeks
and you're not going to be able
to, um, put me back away for a
while.
Um, and so the way that we handle
that is we actually do more things
that are different
and enjoyable so that we can
distract, not in a way where we're
trying to deny that something
is happening and then when, um,
one of us feels like we, we really
need a little bit more support,
then we'll just say something
simple.
Like, you know, I'm, I'm a little
worried about next week or, um,
you know, this is, this is
really stressing me out.
And then almost always it turns
into some reason that makes us
laugh or there's a hug or, you
know, and it's just a quick touch
point.
It's not a whole long therapy
session between the two of us.
It's just like letting it out.
And the fact that we have each
other, that we can share with each
other, how we feel when
we're really stressed out about
something, but in a really simple
way, um, where the other
person receives it and is like,
yeah, I get it.
Like I'm there too.
Or, you know, yeah, I'm here.
Like, let's just kind of like sit
in this moment.
Um, I feel that ability has really
helped me, um, as a caregiver, be
able to, um, allow that
part of the cancer life in and
figure out how to make it through
until we get to that doctor's
appointment, get the information
and then reset and start all over
again.
I hear in what you're telling me
that you actually become a witness
for each other.
Definitely.
In that process.
And it, it brings such a level of
authenticity as you tell the story
about it.
When you do get good news from the
doctor, are you able to feel
genuine relief or does part
of you immediately start thinking
about what's coming next?
No, I don't feel like there's a
little bit of relief.
Um, it's kind of funny.
There have been so many times
where my husband and I have like
walked out of the, of the exam
room where we've had good news
means nothing needs to be done,
right?
He will always have cancer.
And so there's never going to be,
the good news will never be,
there's, it's all gone.
There's no evidence of disease,
right?
And so basically it's, you know,
the treatment's working or we
thought we were going to need
to do a surgery.
We don't have to right now.
And so what it means though is,
all right, we'll see you again in
three months.
Right.
And so the last time, um,
sometimes he has a virtual
appointment because his oncologist
is out of state.
And so we had a phone call and
everything was, everyone,
everything had stayed stable.
Everything was as it was the last
time we talked to him.
And so when we hung up with the
oncologist, I was like, oh,
everything's okay.
And just sarcastically, my husband
was like, yay.
And then we kind of like giggled
about it.
And then we just went on with the
rest of the, of our day because
it's, it's not easy
to like, first of all, if we
celebrated, what are we
celebrating, right?
We're celebrating that what we had
last time is still there.
But for my husband, especially, I
feel, um, if cancer is there, then
the goal has not been
achieved, right?
And so these are all small wins
only because they're not losses,
right?
They're not wins because we got to
something.
They're wins because things didn't
get worse.
And so that's, uh, a little bit
more complicated to be able to
celebrate.
So then after years of living with
uncertainty, what do quiet days
actually feel like physically
and mentally?
Um, I think it depends on what is
needed.
So if we're talking about a period
of time in between, um, doctor's
appointments or scans
and, and they're just normal life
days, um, most times they're just
normal life days, especially
for him because he goes off to
work in a non-cancer related, um,
environment.
Whereas I spend my free time
talking about and writing about
cancer and caregiving.
Um, so I live in that world all
the time because I'm always
creating in it.
And so for me, um, I feel like the
quiet days when it's in reference
to care that he needs
or, um, things that need to be
scheduled for him or follow up,
um, those days are still cancer
days for me because then I have
the bandwidth to write and create
in a different way than I
would if I were, um, really
preoccupied with his care.
So, um, and the thing is with his
care, you know, he's take, he's on
a treatment that there,
anything could pop up at any time.
You know, there are days where,
uh, the question is, do I have to
take him into the ER because
he's having a symptom from a
treatment that he's, he's taking.
So, uh, I think it's harder
because when you're a caregiver
for someone who lives life like
normal, then it's harder for
people to understand that life is
not normal.
We're just living it.
In that circumstance, as a
caregiver, how far ahead do you
now let yourself look?
Hmm.
Well, I can say if it's for
something for fun, it's really
hard for us to plan for anything
more than a month in advance.
And I have to be honest, I don't
know if that's just because of our
personalities or because cancer
or because of both, you know?
Um, so, uh, when it's like
planning for trips and travel, um,
you know, I would say we just
recently went on a trip and we
talked to the person who was
helping us plan it.
They're like, oh, this is 2027
we're talking about.
We're like, no, I was like now in
three months, let's do it.
And, and she was taken aback.
And I realized after it was
because she didn't understand,
like with us, we don't know what's
going to, what's going to be
happening in our lives in a year.
Like we can't do, uh, planning for
a big trip and then do it for a
year away.
Like there's just no way that
makes sense for us.
So in things like that, uh, things
are very immediate.
And also we don't wait to do
things.
Like if there's, we're not sitting
around wishing like some, I have
no, some people who are like,
oh, I wish I could go to this
place or that place or one of
these days.
And we're like, no, if there's
something we want to do, we're
going to go out and do it
because time is never guaranteed
cancer or not.
And I just think with cancer in
the mix, you understand that a
little bit more.
I'm intrigued by that sort of
dichotomy of how you mentioned
husband's off at work at a
non-cancer, in a non-cancer
environment.
And you will retreat to your space
where you create and you share and
you disseminate knowledge
and, um, contribute for other
caregivers.
That must give you great strength
and contribute positively to your
mental health.
It does and it doesn't.
So there are times when I'm
creating something and I don't
realize that I haven't fully
processed
it until I'm in the middle of
maybe writing a podcast episode
or, um, researching something
and it triggers something that, I
mean, there's so many things that
caregivers need to process.
Um, I don't feel like, unless you
have like a full-time therapist
for multiple days a week,
like there's so many things that
you can weed through.
And so, you know, there are times
where it's like five o'clock in
the morning and I'm writing
a podcast episode about something
that I've experienced myself.
And as I'm bringing up the
memories, because I use a lot of
personal storytelling in those
episodes, you know, there are
things that maybe are tender
moments and I'm like, oh my
goodness,
like this is really pulling at my
heart or a realization that I,
that didn't come to me
until I started writing about it.
Because writing brings up memories
different than when you're talking
about them or just
remembering them.
And so the process of writing them
is sometimes it's not writing
them, it's saying them and
I'm recording and that's why none
of my stuff is live because
sometimes I'm, sometimes I'm just
a mess after I'm done and I'll
take a pause and I'll let myself
feel the feelings and let
it move through and kind of like
write a note like, all right, I
need to, I need to sit with
this a little bit more.
So there's a lot of me and there's
sometimes a lot of tears that are
included in the things
that I put out there.
And I get that, you know, people
don't understand that, but
creating from a point of reference
of lived experience is not always
easy.
And so in a way, yeah, it's, it's
good for my mental health because
I'm understanding and
I'm identifying something that I
need to sit with a little bit more
or talk to someone about.
Um, but I love creating and
sharing stories, especially to let
someone else know that what
they're going through is not, is
not just them.
There are so many times when I was
growing up as a caregiver where I
thought I was wrong
for feeling a specific way, or I
was only one going through
something.
And there's a certain type of
loneliness that you feel when
you're a caregiver, feeling like
it's just you.
And so hopefully sharing stories
and, and sharing my techniques
and, and things that I know from
all the years of training I have
had with yoga and meditation,
knowing that those skills have
worked for me because I had to
redefine them when I became a
caregiver, that I'm giving
something
to a caregiver that I would have
needed early on.
And hopefully it helps them get to
a place of understanding of what
they need and how to care
for themselves in a way that I
wasn't given the benefit of
having.
Where do you put all your fear?
Your own fear in all of this?
Hmm.
I let it sit, it sits, it sits out
every once in a while.
Like there, you know, fear doesn't
show up as often as it used to.
Um, so if there's like, I don't
know, someone talks about my
husband or even my, my daughter
will talk about a pain, like
something hurts or they have a
cough that's weird.
Or, you know, there's a moment
where fear comes out and it's
like, uh, you see, like you can't
relax.
Like there's something happening
over there.
And, um, I've learned to
understand that worry and fear
really love to show up if I allow
it
to have the energy that it
actually needs to exist.
And for me, then breath work
really is what comes in where
that's where, you know, if fear
and especially worry used to be a
bigger problem for me when I first
became a caregiver and,
um, learning how to understand
when my nervous system really
needs a break or it's giving me
a signal that, um, it's a little
bit on high alert for too long,
uh, then I know what I need
to do so that I don't sit with
fear or worry or even anger, uh,
for too long.
I let it come out.
Um, it can show up, we can have a
conversation and then, so I can,
uh, I can kind of put a
filter, like, is this something
that I actually need to act on?
And if not, then it goes back
away.
It's such a powerful tool.
And certainly as a
gastroenterologist, we acknowledge
the brain-gut interaction and so
much of what
we experience in terms of physical
symptoms can be affected by
cognitive elements, by mental
health, et cetera.
mental health, but the power of
the breath, I mean, yeah, it's
probably one of the tools.
I have my patients asking for a
couple of tips on just how to get
the process initiated because you
do
need to buy into the process and
there's not one tablet or one
treatment that fixes, you know,
disorders of brain-gut
communication.
Um, but that's probably the one
that I turn to the most is like
something that you can do in
moments
of the day that can really reset
things.
And, um, I think you're bang on
with, uh, with that thinking.
And I'm sure it's a recommendation
that comes up often.
Yeah, I mean, there is nothing
better, right, than to teach
someone how to even just do a
longer
exhale than an inhale and have
them do it for maybe a minute to
see how it changes them.
Where if their eyes were closed
and you finally have them open and
you're like, that was just a
minute.
And, and people are always telling
me when, when I have them do this,
especially in workshops where
I don't have a lot of time,
they're like, no, that was more
than a minute.
I'm like, no, that was just a
minute.
That's all you need.
It's just like for people to not
know that controlling their breath
is a way that they
can not only regulate their
nervous system, but do so many
beneficial things for themselves
that leaves them feeling so good.
And it's always with them and
nobody's using it.
And so for me, that's frustrating.
I'm like, no, let me teach you how
to breathe.
Um, it's a hard sell for some,
some reason, right?
Like, can you sell it to your
patients?
It sounds too, it almost sounds
too easy, right?
But I always tell them I do it
myself and it works.
So hopefully that carries some
weight.
Charlotte, what is going through
this with your husband meant for
your relationship?
For us, it's, I feel it's made it
stronger.
Um, we have had a lot of
opportunities to bond over, um,
good or bad.
Um, there are plenty of inside
jokes that we have now that no one
could possibly understand
just because we were there.
Um, and so, but I think, I, I find
that having said that, there are a
lot of caregivers that,
uh, don't feel connected to their
partner.
And a lot of times when people
become caregivers for any reason,
the reason is stressful and stress
springs a lot out of a person and
if relationships weren't solid at
least halfway before that
happened,
then it's really hard to work on a
relationship that needed work in
the first place and deal
with being a caregiver at the same
time.
Um, so, you know, I've been
really, um, I've been really lucky
to have a husband who I was
really connected to before he was
diagnosed.
And so, I don't, I don't think
that gives me the upper hand, but
I, I also like to preface
everything with, you know, it's,
it's possible to connect with a
person even if you feel like
the relationship has been
destroyed by the disease or the
disability, but it takes a lot
of work.
Like everything that we had before
he was diagnosed, everything that
we have now, it's been tons
of work and understanding and
communication and sometimes it's
not easy and sometimes it
is.
Um, and I feel like people don't
see the work that couples do and
kind of the toil that it
takes sometimes to, um, make
things work when you have
something as big as cancer trying
to get in the way.
Were there times, Charlotte, over
the years where you were
surrounded by people who love
you and you still felt completely
alone?
All the time.
All the time.
Just, you know, when you're a
caregiver or even just in the
cancer world and you're around
people that are not, um, then it's
really easy to feel misunderstood.
And I think the way that I see it
now after all these years is they
just don't have the knowledge
or the, um, the superpowers that
you get when you learn how to live
with cancer, right?
And, and that's not their fault.
And so I've turned it into, this
isn't about me.
Um, this is about other people not
understanding.
And I think that if you can take
that, um, off of yourself of
people don't understand me and
say, no, people just haven't had
the opportunity to live this and
that's fine.
It's the same as if you have a
child and your friends don't,
right?
And so it takes a little bit of
the loneliness out.
It doesn't completely remove the
sting.
Um, but, you know, when you're
talking about holidays and maybe,
um, you know, my husband
was going through a lot treatment
wise and knowing that, you know,
family members maybe don't
necessarily understand, oh, this
is why they're not going to travel
here, right?
Where, you know, they kind of do,
but they don't fully, right?
Cause there's no way to fully
understand.
The one thing that gets me though,
is when a person that I know
becomes a caregiver and
then they come to me and they say,
oh, now I understand.
I'm like, okay, crap.
Now you understand, right?
Um, I've like, I've been trying to
have you understand because, you
know, you're in my
life and, and so that for me, I
think that's, that's more
impactful than the loneliness is
for someone to be like, oh, now I
get it.
I'm like, oh, thanks.
I'm happy that you get it, but
still.
Have you ever asked them in
hindsight, what stopped you from
understanding?
Did you ever get an answer?
No, because they always say it
when they're just recently become
caregivers.
And I know that's the last
question they need, like they
don't need that, that conversation
in the moment.
Um, but yeah, like every time I
hear it, there's a little part of
me that's like, oh, now they
understand.
All right.
All right.
All this, all this time.
Charlotte, tell me what is
something between you and your
husband that cancer has never
managed
to touch?
Um, how connected we are, it is
not broken through that at all in
any way.
Um, I think out of spite, we've
became more connected with cancer
in the house because we
refuse to let that ruin that part
of our relationship.
Is it a refusal to let it ruin or
is it an acknowledgement that this
is part of your journey and man,
we're
in this together?
And does that almost empower you?
It is empowering, but it also,
it's, there's a little spite in
there, right?
It's like, it's in spite of cancer
being here, in spite of how it
tries to make life harder.
We are not going to let it enter
our relationship, even though it
affects it, right?
Um, our roles had to be, uh,
re-evaluated when he was
diagnosed.
There are things that we both
decided to take on, um, as
caregiver and as a patient from
the
very start.
Sometimes when we walk into
doctor's appointments, especially
if it's a new oncologist, like
there's
a little bit of explaining that
needs to happen for them to
understand, you know, who's doing
what and who's responsible for,
for which.
And so, um, yeah, I think, I think
a lot of the time it's, we're not
going to let this
touch our relationship.
The moments and the ways that
we've bonded, yes, that's caused
us to become, um, probably
closer than, or maybe more
understanding of each other than
we would have been if it hadn't
happened.
Um, but there is a little bit of
kind of rebelliousness in there.
So after more than a decade of
caregiving, what does it cost you
personally?
Hmm.
Let me see.
I mean, I don't really know what
my life would be like without
cancer right now.
I mean, almost 14 years.
Um, I'm 52.
Like, it is so much a part of our
lives that I, I don't even know
what survivorship would
look like without cancer, right?
Which is also a big issue for
people who have cancer and no
longer have disease, right?
Um, I don't know that it's, I
wouldn't have done it differently.
Um, I don't feel like my career
choices would have been different,
um, without cancer.
Um, I feel like we have largely
gone forward just incorporating it
into our decision making,
um, but have tried to stay the
course on the things that, as we
evaluated what we wanted in
life, you know, cancer changes a
lot of those goals, um, that we
were like, all right, we're
just gonna, we're gonna figure it
out.
We're gonna figure out how to do
the things that we want to do and
be the people that we
want to be.
Charlotte, you've used the phrase
self-preservation instead of
self-care.
Mm-hmm.
That's huge.
What does self-preservation mean
to you?
Yeah.
Self-preservation is taking the
steps to prioritize the things
that you need in order to live the
life you really want to live.
And that means being the caregiver
that you want to be, being the
wife, mother, friend,
husband, child that you'd really
want to become.
Um, self-care for me is these are
the things that you do because
you, you, you want to have
a little treat.
Self-care doesn't get you through
because, you know, the way people
think of self-care is,
oh, well, all right, I'll go get a
massage or I'll go take a yoga
class or I'll go buy
a box of chocolate and sit and eat
it and then try to hide that I did
it, right?
Things that we were like, I worked
in order to deserve to do these
things.
Self-preservation is not about
deserving.
It's mandatory.
These are the things that you have
to do.
If it means sitting down for five
minutes to just breathe in quiet
or read a book or sing
a song or take a walk or talk with
friends, like that is, that is
self-preservation.
Those are things that you need on
a personal, on a human level, um,
things that your nervous
system needs for you to do so that
it knows that you're not in fight
or flight the whole
entire time that you're awake and
asleep.
Um, it's making decisions for
yourself, only yourself because
you need them, not because
someone told you to do them or
because you felt like you've done
enough this week and, and,
and you can give yourself this
time.
No, these are things that you, uh,
not only deserve, but you need to
make sure that you give
yourself time to do and figure out
how to prioritize them in your
day.
So many of the comments you
receive on our social media
channels point to the fact that
caregivers feel completely and
totally consumed by caregiving and
self-care almost seems impossible.
How can we argue that
self-preservation has a place in
one's day if self-care is barely
achievable?
Yeah.
Do we need to stop?
Do we need to change?
We need to stop putting the burden
on the caregiver to figure that
out.
We need to find ways as the people
that are around the caregivers to
support them in the
things that they need and help
them learn and see how to create
the space to make their own
health a priority.
Because if you tell someone, um,
yeah, you just, you have to make
time, right?
All those things that I just
listed, like you have to figure
out how to fit them in, but
nobody's teaching them how to fit
them in.
You know, there are so many times
in my podcast episodes where I'm
like, start with a question,
right?
Or how about we start with trying
to figure out like, what was it
that you used to like to
do?
Because if you tell a caregiver,
do something that is fun for you,
caregiver is going to
be like, I don't know what that
is.
Like, what is fun?
Like, how am I supposed to, so
you're telling a person who's
completely consumed that is
definitely
given away all of their identity
to caregiving and then you're
telling them, do something
fun, right?
Okay.
Thank you.
I'll put it on the list of things
that I don't know how to do right
now.
Um, if you tell a caregiver, you
know, take five minutes and
they're like, and do what?
And, and what are you telling me
I'm supposed to do with my brain?
Who's like doing the list anyway
and like yelling at me because
there are so many other
things that I can do.
It's teaching a caregiver.
This is going to be hard.
Fun is hard in the beginning, but
you deserve joy.
If the language starts to change
to, these are things that you
deserve, not things that
you're granted, not things that
you get, not like treats.
Because then the priority is
different, right?
Like if you're like, well, you
know, you can, you deserve a cup
of coffee in the morning.
No, they know I need a cup of
coffee in the morning because
that's the only one I'm going
to get through the morning.
All right.
While you drink that coffee,
here's what I want you to do,
right?
Smell the coffee, feel the cup,
like notice the little things,
start doing things in the
things that you know that you're
already going to do.
So I usually have people, habit
stack, where they're doing
something.
Let's say you're brushing your
teeth.
Do you remember what you did this
morning when you brushed your
teeth?
Probably not.
You know you did it.
But so when you're brushing your
teeth, could you look at yourself
in the mirror and just
tell yourself, oh my goodness,
yesterday was hard, but we got
through it.
And now we're starting another day
and we're going to do it.
It's little things like that that
are part of the self-preservation
because there's no
way I would ever ask a caregiver,
you know what?
Stop everything.
Go do something for a half hour.
Oh, and by the way, it'll take you
15 minutes to get there.
So that means that you're out for
an hour and you're going to
completely wipe your brain
from any of the responsibilities
that you're leaving behind, right?
That's not going to work.
And I think that it's...
That's not going to happen.
No.
And it's so...
It's mean to tell a caregiver, go
do something to take care of
yourself.
Because first of all, if a loved
one or a friend is saying that,
literally what they're
saying is you look like crap and
I'm a little scared, right?
Go do something to make me feel a
little bit more comfortable about
the life situation
that you're in.
Make me feel more comfortable
around you.
Yeah.
Right.
And then, oh, go figure it out.
Like even people who are told,
like I've had so many people say,
I do not meditate.
I do not do any breath work.
And I'm like, I get it because no
one's taught you.
It's always on a list of things to
do.
Someone was like, I get angry
every time I see on a list that I
should be journaling
because on the caregiver list of
things to do, it's usually
journal.
It's like mindfulness.
And people are like, what is
mindfulness?
I don't understand.
What am I supposed to journal
about?
And so they're given all these
lists of things to do and nobody
is telling them, and here's
how to do it, or I will help you
figure it out.
And oh, here's also how to justify
the time.
To take to do that.
You think that's just the fault of
the wellness industry, or do you
think that maybe we as
a society need to incorporate
those resources into our
communities and into our churches,
for example, or other
organizations where we start
taking better care of each other?
Yes, to all of those things.
And I think that, look, if a
caregiver doesn't feel like they
can take a nap, right?
If you ask a caregiver, what would
be the worst thing if you finally
decided to take a nap and
it's someone walks in on me taking
a nap because then I'm not looking
like I'm being productive,
but an oncologist can take a whole
month off for a vacation?
That's society saying the
oncologist deserves that time
because they're so stressed out
and
we need to make sure that they're
capable of doing the job that
they're doing because it's
so important.
But a caregiver can't take a
20-minute nap because the world
around them is saying,
you don't deserve to do it.
You should be selfless.
You should be a martyr because
that's what we expect you to be.
Because if not, if you don't do
these things and we're going to
have to do them, that's the
problem.
The worlds around us are giving
the message that you don't deserve
to do these things and
take this time.
And it's being signaled from the
very start when someone's
diagnosed that everyone asks,
how is that person that you're
caring for?
And never meaningfully asking the
caregiver, how are you?
With expecting a real reply back,
right?
It doesn't happen in the doctor's
offices.
The doctor doesn't, I've not once
had a doctor sit me down and say,
how are you handling this?
Is there anything that I can do to
support you, right?
And so if a caregiver doesn't
believe that their job is
meaningful, then they're not going
to make the decisions necessary to
allow them to do that meaningful
job in the best way that
they can because they're trying to
do it all on their own and they're
assuming and expecting
no one to show up and help them in
any way.
And that can be reinforced by
lifelong experience that date back
to early family dynamics and you
can see how that can compound.
And when the call to caregiving
finally occurs, it's a very
difficult habit to break.
Let's get a little bit more
granular.
Let's get a little bit more
granular.
How do you practice
self-preservation in your own
caregiving?
Yeah, I kind of look at what I do
as rituals throughout the day.
So in the mornings, I'm here at my
desk early.
I love to write before my brain
turns on.
There's just something about it.
And so for me, that brings me joy
to write.
Maybe it's writing for the
podcast.
Maybe it's just writing in
general.
Once my husband leaves, you know,
I'll come to a place.
It doesn't really—I don't have
like a place right now where I'll
sit and I'll do a five-minute
breathing exercise.
Then if there are moments like
talking to someone like this, I
will immediately, once
I'm turned off, get up and leave
my house.
Like there are things
energetically that I understand
that I need to do.
If I'm having a really stressful
day or I need to rethink something
or I feel there's something
underlying that I'm not addressing
and it's really getting in the
way, I'll do—I'll put
myself in a place that is not
normal.
So my family, like if they were to
walk in on me and I'm laying on
the floor looking up
at the ceiling in a very not
normal place in a room in the
house, they're like, oh, she's
just hanging out.
Like she's figuring herself out.
So it's how can I change the
perspective in my brain?
How can I smell something
different?
That could be I go out and I walk
barefoot in grass.
Like maybe I need to be grounded.
Maybe I need to like hear water.
Maybe I need to go look at art.
So there are some things that I do
all the time to kind of like set
up that foundation, especially
in the beginning and at the end of
the day.
And then throughout the day, it's
based on—it's kind of like, you
know, choose your own adventure
book.
It's like, what does Charlotte's
nervous system need today?
Do I need to work less?
Do I need to take a nap?
Do I need to talk to a friend?
Like all of those are ways that
for me, it's a normal day.
Like it's a normal day for me to
just go and walk barefoot down my
sidewalk on the grass
and not care what people think.
I think that's an important part
is not caring what people think.
It sounds so personalized.
And yet, when we're caregiving in
the home with all of the tools and
devices and or machines
and areas to do dressings or
whatever the home caregiving
element requires, it's amazing
how we strip the environment of
all of the personal mementos or
art books or things because we
need
to clear the space to caregiving.
But in fact, those are the things
you need around you as a caregiver
to reinforce who you
are and how you want to feel.
So what about your approach do you
think others can apply to their
situation?
Yeah, I would say, think back to
high school and the first thing
that shows up in your brain,
in your core memory of something
that you used to love to do.
Was it doodling?
Was it singing?
Did you like to dance?
And then try to see for the next
few days, can you bring a little
of that back, right?
What was the song?
Pull it up.
Listen to it.
Go when you're in the car the next
time.
Like, blast it and sing as loud
and as badly as you can.
What is the thing that when you
look back, it, like, makes you
smile?
Because usually it's, like, high
school is where if I get someone
to think back to that,
they can easily identify things
that used to bring them joy.
Maybe it was a food.
Maybe it was a movie.
And then do that thing.
There's always a way.
Like, if you're like, oh, no, I
used to paint with, like, oil
colors and that takes up too much
space and I, no, okay, fine, then
grab a piece of paper and a pen
and just start doodling.
It's the bringing the little parts
of you back out that you allowed
yourself to enjoy.
Because those usually are the
things that we pack away first.
So, you know, I would say, like,
think of that thing.
Maybe it's just like a smell.
Maybe, you know, if you're
listening to this in fall, like,
there's a smell in the fall
that you always liked to smell.
And go find that smell.
Even if it's buying a jar of
cinnamon and sitting and smelling
it.
It's those things that make you
relax and allow you to breathe
deeply without you even knowing
it.
And your nervous system is like,
oh, we're cool right now.
Like, I don't have to worry.
Like, nothing is trying to kill us
at the moment.
Those are the things.
So, I would say pick the one thing
and see what it takes for you to
be able to do it.
So, Charlotte, what's the one
thing in your life that's still
just yours and has nothing to do
about cancer or caregiving?
Um, I love cooking.
Yeah, for me, it's cooking.
It's figuring out, you know, how
to put things together and
traveling.
Traveling also is a thing that I
love doing.
So, after more than a decade of
caregiving, is there any part of
you that hasn't changed?
I'm still silly and ridiculous and
sarcastic all at the same time.
So, if you can't take that
combination, then you're going to
have a hard time hanging out with
me.
Because it's always been that way.
You know, just before we go, I
would like to ask you one more
thing.
Amidst all of the chaos and
challenges of the last 10 years,
can you tell me about an
unexpectedly happy moment that
made you laugh out loud?
Oh, my goodness.
We, I laugh all the time.
Um, yeah, we were, I laugh at
people falling.
So, you can judge if you want.
Um, my family, my daughter,
husband, and I were just on a trip
to Ireland.
And we were, of course, it was
rainy and wet.
And we were kind of like on this
mound.
And, um, we were walking down and
my daughter slid down part of the,
of the little hill.
And we laughed so hard.
And she was hating it.
She's 23 and she's still kind of
like, she's like, oh, my goodness.
And then the funny part is my
husband tried pulling out his
phone to like get whatever was
left, like to record it.
And she was like, you're not
helping me.
And you're just pulling this phone
out.
And, um, yeah, it was, it was so
happy.
Um, it was such a happy moment
because, you know, because I love
laughing at any moment.
Um, but just having that laugh
with two people that I love
immensely, like just made it
better.
Charlotte, I'd like to thank you
for taking the time to visit with
us today and to bring a
well-preserved version of yourself
to the conversation.
And I'd like to end on that note
and invite our listeners to follow
your lead and self-preserve above
self-care.
Yeah.
Thank you so much for having me
today.
Thanks for the work that you do.
Thank you.
That wraps up this week's episode
of the Care Gears Podcast.
I'm your host, Dr.
Mark.
See you again next time.
Charlotte, thank you for sharing
so much of your experience with
us.
If this conversation helped,
please follow or subscribe to the
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Thank you for listening, and we'll
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Before we wrap up, I wanted to
remind you of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional medical advice, care,
therapy, or crisis services.
Listening to this podcast does not
create a doctor-patient or
caregiver-client relationship
between us.
If you're facing a medical
concern, health challenge, a
mental health challenge, or a
caregiving situation that needs
guidance,
I encourage you to reach out to a
qualified professional who knows
your story.
If you're ever in crisis, please
don't wait.
Call your local emergency number
or recognize crisis hotline right
away.
You deserve real-time help and
support.
The views you hear on this show,
whether from me or my guests, are
our own.
They don't necessarily reflect any
organizations we work with, are
part of, or have worked with, or
been part of in the past.
This podcast is an independent
production, and it's not tied to
any hospital, university, or
healthcare system.
Thank you for being here, for
listening, and most of all, for
taking the time to care for
yourself while you continue to
care for others.
I look forward to hearing from
you.