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The cost & courage of caring - stories that spark resilience.
Kate, welcome to the Caregiver's
Podcast.
Thank you so much for having me.
Kate, I'd like to begin with this.
Some caregivers have a terrifying
thought.
They ask themselves, is this a
life sentence?
Is this something that's only
going to end with the death of me
or them?
Did you ever have that thought?
I did, actually, yes.
As you know, I was caring for my
then-husband.
This was a number of years ago
now.
But he actually received more than
one terminal diagnosis.
And at many points, I was told he
was very likely to die even
outside of those terminal
diagnoses.
And I thought that it would likely
end that way.
But on occasion, I did feel it
might end in my own, if not death,
needing to abandon the situation.
I felt trapped and like I might
need to run away.
And I think, you know, I think for
many caregivers, the scenario you
just pointed out is all too real.
There's no end, sadly, except in
death.
I was fortunate that, you know, my
husband and my kid's father
survived.
So before anyone even called you a
caregiver, before there were forms
and labels sort of assigned,
what was happening sort of in your
life that made you realize
something fundamental was shifting
before you
and that your role as a partner
was just never going to be the
same?
Well, you know, there were a
series of moments where it kind of
sank in or where I knew things
or got that sense that something
was happening and something was
really changing.
And when I look back, I had no
idea that I was becoming a
caregiver in my first act and
moment as a caregiver.
But it's so vivid to me.
And this was in the fall of 2014.
Our younger child, our daughter,
was just starting kindergarten.
And I've been a freelance writer
my whole career.
So when she was starting
kindergarten, I was like, I have
made it.
I have, I'm going to have time,
time to work on projects, all
kinds of things.
Like, my care responsibilities
felt like they were easing up.
And that very day, I was working
at this little desk I had in the
kitchen.
And my husband, who always wore a
beard and also who had lost maybe
30 pounds off not a very large
frame
over the preceding six months,
came into the kitchen.
And he put his, he had his hands
on his, on his jaw.
And he said, I have these funny
lumps.
You know, it might just be from
like taking a hockey puck to the
face earlier in life.
But do you think I should get them
checked out by the doctor?
And I said, yes, I think you
should go to the doctor.
Because I thought it's, the weight
loss is weird.
He was like falling asleep,
reading books to our kids and
thought these are strange.
And I said, you should definitely
go to the doctor.
And I was unaware that that was my
first act as his caregiver.
But looking back, that's what it
was.
And then there was a long period
of limbo where we heard from
doctors, you know, we don't think
this is anything.
But if you really want, we'll
check it out.
If you insist, we'll biopsy.
If you insist, next steps, next
steps, next steps.
And it took six months to get a
diagnosis of a very rare form of
lymphoma that he had.
And far long, even longer than
that, before he started treatment.
The moment, you know, the moment
of his diagnosis, I knew things
were changing irrevocably.
But the real moment that was the
absolute turning point where it
was a sudden emergency and a shock
was all the way in May of that
next year.
So May of 2015, he'd had a cough.
There was a long kind of, we'd
gotten second opinions.
There was a long like, how do we
treat this?
There's not any data on this
particular form.
We don't even have a name for this
form.
The insurance had turned down one
chemo option.
So we were waiting and in limbo
and it was a Saturday evening and
I just put in the, ripped out the
last of the winter garden because
I live in California and put in
the summer garden that day.
And it was the first really hot,
hot day of the spring.
And I was putting dinner on the
table with the last of those
vegetables from the garden.
And he called from the bathroom,
you know, come here right now.
And truth be told, I was a little
irritated because nobody was
coming to the table.
You know, my kids were
dilly-dallying and he, I thought
he was dilly-dallying.
Well, it turned out he was in the
bathroom coughing up blood and
that a lung tumor that nobody knew
about had ruptured.
And I called a neighbor to sit
with the kids and drove him to the
hospital and drove through the red
lights.
Fortunately, we're a mile from the
hospital.
And that was the moment when it
was like, oh, everything has truly
changed.
Even if hemoptysis will do that,
won't it?
Yes, yes.
And I want to, I want to kind of
draw a point to that where it's
like, I kind of experienced both
ways that people enter into
caregiving, which I think is, on
the one hand, it's often unawares,
like the slow slide.
You know, people notice that mom
or dad isn't remembering things,
they take them to the doctor and
before they know it, they are
really involved in care.
And it's that slow kind of entry
unwittingly or the emergency.
And I had a taste of both, which I
think is probably not as unusual
as I think it is.
But, you know, very few people
enter into caregiving eyes wide
open, knowing like, this is a path
I have chosen.
And I think it makes it really a
lot harder, both in practical ways
and in emotional ways, that
there's not that, it's not like a
job you've applied for and been
interviewed for and you know what
you're getting into.
I mean, and you went through this
sort of indolent phase, to use a
popular term, as a caregiver.
And then this sort of abrupt,
abrupt awakening.
And that was, you know, before you
probably maybe even understood
what branding as a caregiver is.
But at that point, or soon
thereafter, that idea, that notion
of being a caregiver and
ultimately you had a caregiving
assessment done.
I think you were working with an
app or some sort of questionnaire
and you had this assessment.
What did it suddenly feel like?
Oh my God, my life's being
translated into a scoring system.
Yeah.
That was more than a year later
after the emergency, the
hemoptysis that I just described.
And Brad, my then husband, had
gone through, you know, intensive
chemo, a relapse, and then a very
difficult stem cell transplant.
So just to frame that.
And he had come home needing
round-the-clock care, which we had
to hire in-home caregivers to help
me with.
And even though we had
round-the-clock in-home
caregivers, my role caring for him
was still, you know, a full-time
job and then some.
And in a doctor's appointment that
I took him to, the doctor looked
at me because I was just weeping.
I had kind of broken down.
Because when he came home from the
hospital, he'd been in the
hospital for over four months.
And I thought things, you know,
the hospital was as hard as it
could get.
But it turned out having a very
needy patient at home needing
round-the-clock care, also with
two small children in the summer
when school was out, was
significantly harder.
And I was already pretty much at
the end of my rope.
And so I started crying in this
doctor's appointment.
I just was, like, looking down,
just weeping, weeping, weeping,
which is not like me.
And the doctor knew it was not
like me.
And he looked at me and he's like,
are you caring for your—are you
taking care of yourself?
Because if you don't take care of
yourself, you can't take care of
him.
And then I turned really quickly
to feeling mad because I felt
like, I don't have time to take
care of myself.
I barely have time to take care of
all the other people who need care
in my life.
But I went home and I, you know, I
was dutifully thinking, like,
okay, I got to look for something.
So I started to Google looking
for, like, caregiver support
groups.
And what popped up in the, like,
you know, Google auto-populates a
search was caregiver burnout.
And there was a quiz.
And I clicked on that and I took
it.
And when I was finished with the
quiz, the answer was it popped up
with a picture of a burnt piece of
bread.
And it said, you're already toast.
And then it had some description
of, you know, all the ways you had
already reached burnout.
And I thought, oh boy, first of
all, I love the phrase.
So I say, I actually, I think at
the time tweeted, like, oh, well,
I found the title of my caregiving
memoir,
which it did eventually become the
title of my caregiving memoir.
But I also thought, like, well,
where do I go from there?
I'm already toast.
This quiz has told me.
And, you know, I can't remember,
you know, it wasn't a scientific,
it wasn't a scientific assessment.
But, you know, it was the kind of
assessment that honestly, I think,
should be included in treatment
plans for patients to assess where
their caregivers are.
I think that something like that,
that looks at, you know, the
mental, physical, and emotional
health of caregivers, you know,
would go a long way even toward
helping see caregivers as an
important part of, you know, of
patient care and of including them
in the process
and making sure that they're
coping well enough to continue the
work that's really essential for
patients' well-being.
So tell me, what if you had done
that quiz or questionnaire one
year before?
How do you think you would have
scored?
I can't remember what the other
metrics were, but I don't think I
would have been at that already
toast point.
I was, you know, after that, after
that emergency, Brad did spend
almost three weeks in the hospital
at that point.
His lung collapsed, he needed this
emergency chemo, and so he came
home from that also on oxygen,
needing IV antibiotics through a
PICC line,
which I was sort of trained to
give very hastily, and which came
as a big shock to me that I was
doing these medical tasks.
And that was the first moment I
really realized that those are
really routinely expected of
family caregivers nowadays.
But I think I would have scored
somewhere before burnout, but in
a, like, lookout and, you know,
make sure you have all the support
you can get.
You're asking for all the help you
need and trying to take time for
yourself.
I mean, honestly, though, the
demands, ultimately, of his
illness, of the crisis of his
illness,
and I know this is the case for
many family caregivers, were so
extreme that, you know, self-care
was not enough of a prescription.
And we did have, you know, family
support.
His parents came from Canada,
lived with us, helped us, helped
with our children, family,
friends.
And, you know, there was a period
of months when, you know, every
meal was delivered through a meal
train,
a friend or an acquaintance, or in
a couple of places, even strangers
who, you know, had heard about our
story and, you know, from a friend
and wanted to help.
So I feel like we had excellent
community and a lot of support and
still, and I had a lot of
privileges in other ways that I'm
happy to talk about,
but still the demands of
caregiving through a really
devastating illness and what, to
me,
the medical establishment expected
patients to have available to them
at home, i.e., literal 24-hour
care where you never take your
eyes off a very ill patient is not
realistic, not feasible for many
families.
And part of the reason I wrote my
book is because I thought, if I
have all of these advantages, if I
can, if I have so much help, you
know, financial resources, live
close to the hospital,
have, you know, enough education
to be able to talk to the doctors
and understand what's going on,
you know,
I didn't have a job, I was a
freelance writer, so I could stop
working, though that wasn't, you
know, great for the bottom line.
But I had all those advantages and
it was still, I was still drowning
and getting to the point of
becoming already toast.
What must it be like for most
people?
Like what kind of crisis in family
care are we facing and what does
that do both to the caregivers
themselves
and also to ultimately the
outcomes of patients and the
people we love and who we want to
care for
but have a really hard time doing
so sustainably in this system?
Well, a couple of things I hear
there is that, you know, you
stumbled across that online
assessment,
but really what our listeners need
to be aware of is you need to ask
yourself those questions.
You need to take an inventory
early on because, like you said,
when someone said, you know, you
really need to take care of
yourself,
they told you away at the wrong
time.
That's what you need to hear at
the beginning and I'm really
struck by, you know, you're
comprehensively resourced,
very capable and told you need to
be there 24-7, which was probably
one of the most overwhelming
things you've ever heard,
but there's a range of different
people in different family
situations, different financial
situations,
and everybody's getting that same
message.
I can't fathom the catastrophic
feelings some early caregivers
must feel when faced with that.
Do you think that's just a rubber
stamp approach of the medical
establishment?
It's like, that's it?
Or did they have confidence in you
that was beyond the norm?
I think, you know, they had
confidence in me.
I think, you know, and I should
clarify, the hospital and the
physicians and the nurses,
all the people who treated my
husband were outstanding.
They unquestionably saved his
life.
I don't question their medical,
you know, skill and devotion to
their work and to patient
well-being and all of those
things.
But like, you know, I'm, first of
all, I or any caregiver, I'm not
their patient.
They're, you know, they're looking
at a patient who has very high
needs and at home, when that
patient is at home, they can't do
anything.
It's a bit out of sight, out of
mind.
And I think, you know, there were
occasions where people were out of
touch with the demands that were
being placed, you know, upon me or
upon the care system.
Like, when he went home from the
stem cell transplant, he was on IV
nutrition, which was a quite
complicated process to set up.
And at one point, an older
physician said, oh, you know, it's
not that big a deal.
You just plug it in.
Many of my patients do it
themselves.
And it's like, well, once I got
good at it, it took me 20 minutes
to half an hour.
It was complicated.
It was tricky.
And I might point out also at the
time, my husband had lost his
vision.
He was blind and unable to walk
unassisted.
So it was not a matter of him
plugging it in.
It was me very carefully with
without medical training, you
know.
So I was nervous about doing all
of these things, trying to learn
to, you know, not harm him in the
course of caring for him.
And I think, you know, I'm
speaking from within the U.S.
context.
And there's, you know, we have
obviously a range of for-profit
and nonprofit health care.
The health insurance landscape is
very fractured.
There's all kinds of bureaucratic
and financial considerations, you
know.
And there's been a huge hospital
to home movement, which I think is
wonderful for many patients, but
also not coincidentally really
improves the bottom line and cuts
costs for hospitals and medical
systems and insurers.
And I think that there's a lot
that has gotten shunted on to
family caregivers, both in terms
of, like, the complexity of
medical tasks and the complexity
of care that's expected of us, of
them, since I'm no longer in that
role at this time.
And in terms of financial and time
resources, that is a function of
cuts, of cuts to the medical
establishment.
And then it's like, well, somebody
has to pick up the slack and
there's an assumption that you'll
do it.
And it goes in, like, from large
to small.
Like, there's such a huge range of
the ways this can function, even
something as small as, you know,
follow-up appointments.
You know, when they call you and
they tell you, like, oh, well,
you'll be seen at 3 o'clock for
this, you know, Tuesday for this
essential thing.
It's like, well, actually, I have
two small children and I need to
pick them up from school at 3
o'clock.
But there's not a, is it okay if
it's at 3 o'clock?
It's a, that's when it is.
You figure it out if it doesn't
work for you.
And then that ramifies across
dozens of large and small
complications.
Because care is, you know, I think
of necessity, patient-centered and
doctors are under a huge amount of
pressure.
The system is under a huge amount
of pressure.
And I think caregivers are often
unwittingly caught in that bind.
I do think there are hopeful signs
and some hopeful movements in the
10 years or, you know, nearly a
decade since I was really in the
trenches of that.
I've seen movements toward more
involvement of caregivers, more
inclusion.
I think the pandemic showed a lot
of people in the medical, like,
revealed kind of culturally to a
lot of people how essential
caregivers are.
When we saw, you know, the effects
on, for instance, you know, older
folks in care homes when their
caregivers couldn't see them,
couldn't be with them, and how
devastating that was and how much
it affected their care.
You know, there was some light
shined on both the plight of the
caregiver and also how essential
that is to good patient care.
And so I've seen things like there
are now some caregiver clinics or
caregivers are more included in
patient assessments in small
things, especially, I think, in
the dementia care communities here
in the U.S.
The Veterans Administration has
led in some, like, caregiver, you
know, pro-caregiver movements.
There are hopeful signs despite it
still being, I think, a difficult
climate in any number of ways.
It's interesting because you're
right, it's not just plug and play
for home TPN.
I actually supervise a TPN team
here in Ontario, and there's a lot
of decision-making that goes into
whether, you know, patients and
their caregivers can actually
handle home TPN because there are
lots of risks.
I always refer to it as home
chemotherapy in a way.
Yeah, yeah, I mean, we, it was
even just a space issue, like, I
needed fridge space, so we were
lucky that there was, like, a
little bar fridge in one part of
our, you know, in one part of our
house that the previous owners had
put in.
And I was like, well, finally, I
have a use for this bar fridge,
like, so that nothing is, you
know, all the, yeah.
So let's, I mean, time has passed
since those events, but our
listeners, I think, many are going
through various phases of their
evolution of their journey as a
caregiver.
When you think back to those first
couple of years, when did you
first realize that, ooh, this
isn't going to be a short-term
crisis?
This is growing legs.
Yes, it was really that day or the
couple of days following that
emergency, the hemoptysis, that I
realized that for myself
personally.
And I don't know if you were
asking if it was, you know, for me
or for the broader, you know, the
broader caregiving community.
But as I start, as I was going
through it and starting to talk to
more people about it and hearing,
like, oh, this is not an uncommon
story.
You know, every one of the
millions of caregiving stories is
unique, but it's not uncommon and
they have so many common themes
and common challenges.
And I started, it was really when
I started thinking about working
on the book that I initially
wrote, you know, that I started
asking those questions.
Because what I tried to do was
write the book that I wanted to
read and needed to read about,
like, why I was struggling so
much.
As I say, you know, at first I was
kind of baffled, you know, like,
why is this so hard when I have
all this, you know, have all of
these advantages?
And I thought, like, it must be
me.
It must be my problem.
And I wanted to look at it through
a systemic and a cultural lens.
And that's kind of what led me to
start looking into, like, oh, what
are the demands?
Like, what are some of the
numbers?
You know, I have this background
not only as a journalist and
freelance writer, but also way
back before then as a, I was a PhD
student in Victorian literature.
And so I'd read a lot of books
where there were caregivers in the
background.
And I'd never, you know, like many
people, I'd never really noticed
that many of the classic
literature that I'd loved for a
long time were care stories, were
caregiving stories.
And so when I revisited those,
originally, like, as comfort
reads, when I was, you know, in
the thick of things, I started
thinking, like, oh, there's a
whole complex and constellation of
cultural assumptions around care,
around who we think cares for
other people, what they should be
doing, how they should be feeling
emotionally.
I think there's a lot of emotional
pressure to, you know, you know,
you hear all the time, you're so
strong, I can't even imagine,
you've got to stay positive,
there's toxic positivity around
it, there's pressure to not feel
the, you know, frustration and
resentment that caregivers really
often feel, and then that produces
guilt.
So the more I started thinking
about it and living it, and then
meeting other people who were in
similar roles, I started seeing,
like, oh, this is, this is
actually a big and
under-recognized cultural
phenomenon.
And then as I started researching
the book, I realized, like, we are
at the cusp of this real care
crisis, and there were and
continue to be advocacy
organizations and places that are
looking out for that and really
exploring it and sounding the
warning bell.
Because the year my book came out,
which was 2021, the first wave of
the baby boomers were entering,
were turning 75, and so the baby
boomers, this enormous generation,
are entering into old age, which
many of them, including, you know,
many baby boomers I know and love
do not want to hear that they are
old or getting old, but that does
necessarily mean that eventually
they're going to need more care.
And there's not enough of us in
the younger generations to do it,
either as family caregivers or as
paid caregivers and in-home care.
Well, it's hitting at numerous
levels, and we're dealing with it
in Canada, looking at
opportunities to incentivize, you
know, foreign workers who have
skills and expertise in
caregiving, and I know there's
various initiatives going on in
the U.S.
And state-specific, different
initiatives, difficult to do in an
age where the focus of most social
media is towards what some people
label as toxic individualism.
Yes.
Where we need to go back to the
notion that it takes a community
and a village to care-give just
like it does to raise a kid.
Yes.
So, take us through the worst days
or a worst day.
What happens from the moment you
open your eyes and wake up?
I'm going to talk a little bit
about February 2016, which was the
month where I most thought Brad
was going to die.
He had his transplant in January
of 2016, so the 10th anniversary
of that just recently passed.
And if all had gone well with the
transplant, the minimum he could
be in the hospital, or he could
have gone home after 30 days, that
was like the minimum if all had
gone well.
But things went terribly.
He got a very severe case of acute
graft-versus-host and started
losing his vision, started having
terrible digestive gut health
issues that were just awful.
And so, that month, you know, I
was at home with our two kids who
were then, they were 10 and 6, and
so in 5th grade and 1st grade.
So, I would get up and I would
immediately be thinking about, you
know, laundry that I'd brought
home from the hospital that I was
going to have to bring to the
hospital that day.
I would sometimes, though I didn't
do it as much, like try to race
off to the gym at 6 in the morning
because my in-laws were living
with us for quite some time.
So, they were in our guest room so
I could leave in the morning.
So, I had that support, but just
to try to get a little exercise or
a little time for myself.
But then the race would be on to
get the girls to school.
I knew that I was going to have to
leave them in aftercare, which
they did not enjoy and made me,
they made that very clear.
And, of course, they were
struggling and I had them in
therapy and some like support
types of groups.
There was an art therapy support
group that a hospital social
worker linked us to.
So, and they were still in some
activities because I was mindful
that this was, you know, their one
childhood.
So, the whole day was about
thinking like, how do I get my
kids here, gulp down my coffee,
get to the hospital with the
things Brad needs.
When I would get to the hospital,
he was essentially usually not
really able to talk, carry on a
conversation.
The kids didn't see him for close
to three months and he was also
not well enough to talk on the
phone.
And he'd been a very involved dad,
so they missed him terribly.
So, there was a lot of the kids
would be acting out.
I was always tired, I was always
behind on something, you know,
trying to just keep, you know, on
top of, I don't know, whatever,
even thanking the people who
brought us the meal train.
At one point, we were getting food
and we had to borrow an extra
fridge from my next door neighbor
because I was trying not to, you
know, I was trying to keep all of
this food.
So, there was just always this
welter of tasks there was calling
the insurance, making sure that
was running, there was getting
into the hospital.
He was in an isolation room.
So, when I got to the hospital, it
was, I learned all the best routes
through the hospital and learned
where the best coffee cart was and
what its hours were.
And then I would go up through the
little shortcut that I'd found and
go up to the little vestibule
outside of the room and put on the
mask, put on the gown and, you
know, sanitize, go into the room.
And usually, in the room, he
would, you know, sadly be on a
commode.
He was not able to get to a
toilet, but the digestive, the gut
graft versus host disease was
terrible.
He was in horrible pain with his
eyes.
His elbows would bleed from the
roughness of the hunching on the
arms of the commode.
And so, I would see him, you know,
the father of my kids, my husband,
in this state that was so painful
to witness.
And he was in pain.
He wasn't, you know, very
coherent.
And I was also trying to field
communications with other people,
you know, coordinate with, you
know, my in-laws who are
incredibly helpful.
I don't know how I would have
gotten through it without them.
And then just, like, wait.
Then be in that room, that little
stuffy feeling room where he was
in pain, waiting and waiting and
waiting for the doctors to come on
rounds.
So that I could find out what was
going on, try to advocate, try to
get more help.
The level of trying to understand
the hospital bureaucracy and get
different things for all of the
different complex of, you know,
issues that he had.
He was unable to eat.
He had terrible mouth sores.
He had, you know, there were
medications that they wanted to
try that he, in his, you know, not
really understanding fully what
was happening was opposed to.
So I was trying to convince him of
things just that that's, I've gone
on too long, but that, that gets
me to about 10 o'clock in the
morning.
Well, that paints the picture
though.
And that's 10, exactly.
So just for our listeners, graft
versus host disease is when you
receive a donor bone marrow
transplant that is matched as best
as it can so that it can grow in
your own bone marrow and cure you
from your previous disease.
Sometimes that bone marrow starts
attacking your own body tissues.
It can attack the gut, it can
attack the skin, the eyes, the
liver, all kinds of different
places.
And it's an unfortunate sort of
juggling act between, you don't
want to reject the graft, but you
don't want the graft to attack
your own body organs.
And it's, it's, it's quite the
dance and unfortunately it's
graded in different stages, grade
one, two, three, four.
And unfortunately I think Brad had
a grade four.
He had grade four.
Which is the worst kind.
He had every single type that you
just mentioned.
It attacked in every single place.
And I, I used to describe it as
it's like the reverse of if you
get a kidney transplant and your
body rejects the kidney, this is
your, your new immune system
rejects all of you.
And in his case, it was, it was
all of him.
And, you know, he had a very well
matched, you know, he was a 10 out
of 10 match.
It was his, his brother who's
wonderful was the donor and came
down from Canada.
And as you say, if, to do the
donation, and as you say, you
know, if the graft fails or if you
reject the graft or overcome the
graft, it, the, the patient dies.
You can't, they can't be saved
because they have no immune
system.
But also the graft is what is
having the cancer fighting effect.
So you want a robust graft, but if
it's too robust, it, in, in its,
you know, reduction of you, it
can, that can also kill you.
So it was a very, as you say, it
was a very challenging dance and
balancing act of different
medications, some of which would
seem to work and then not work
anymore.
And, and which are very powerful
and very, you know, difficult for
the body to handle.
So it was a longstanding and
graft, graft versus host also
comes in two, two major types,
acute, which is like the initial
reaction, which he had at that
time.
And then chronic, where it sort of
settles in for the long haul.
And he did continue to suffer
from, does continue to suffer from
chronic graft versus host disease.
But I will say, and I should say
this because there was, um, you
know, a happy ending in that he
was able to recover his vision
through surgeries.
The graft versus host is much,
much reduced.
He's able to live independently.
He's, he's doing very, very well
and kind of beat all kinds of
odds.
Um, you know, it, it was a bit of
a miracle in the end.
With a huge collateral effect on
people's lives, not only the
patients, that's incredible.
When you were getting through the
rest of your day, I mean, you told
us what you got done by 10
o'clock, which is, sounds like
more than many people get done in
a week.
What, um, if you stopped, what
would be the crucial thing that
there wouldn't even be anybody to
step in to do if you weren't
there?
Like, would things just sort of
improve?
I thought they would.
I'm not sure that they would have
because we did have, you know,
support from Brad's, uh, mom and
dad.
Um, but I did feel like that
liaison of talking to all the
doctors and he was in a teaching
hospital also.
So there were many, lots of
residents and a big team involved
in the care.
And so for me, I felt like kind of
the glue, I, I often felt like I
was playing twister and reaching
behind one and, you know, reaching
in all kinds of ways to, to catch
all the necessary dots.
But I did feel that being just
kind of the glue of communication
and making sure the different
teams were talking to each other,
which was often very difficult.
There was, this is, you know, by
the by, but, uh, getting
ophthalmology support was very
challenging because nobody was
used to working with the
ophthalmology team.
Because if you think about how
rare it is that a patient comes
into an oncology unit and then
loses their vision on the oncology
unit, that was not like a
well-oiled machine between,
between the two of them.
So just trying to make things
happen.
But then there were also all the
pieces of our lives that had to go
on, you know, the thing that would
have collapsed without me was also
paying the mortgage, paying the
bills, you know, filling out the
field trip forms for my kids to go
to, you know, to like the things
they needed to go to school,
making sure that they had that
poster board for that, you know,
that last minute project that I
didn't know about until two nights
before it was due.
Um, you know, because there, all
of that stuff didn't stop either,
you know, and I, it did kind of
pull back on some of their
activities, but like, you know,
those things, those things don't
stop.
And, um, I wanted them to feel
like they were still, you know,
they were still important,
obviously, but, um, those, those
kind of just the nexus of things.
And, you know, I should say, I,
one of the things that it actually
revealed to me doing this was that
I'd been carrying by far the bulk
of the mental load and all of that
household labor all along because
subtracting Brad from that
equation, like his illness added
very greatly to my challenges.
But it didn't add that much to,
like, thinking about, like, oh, is
it time to get Nora, our older
daughter, new size shoes and then,
you know, to hand me down the next
ones to her little sister and
clear out the closet.
And, like, all of those kind of,
like, constant mental wheels that
were turning that, you know, what
they now call mental load or, um,
invisible labor, those were still
ongoing.
And I realized, like, oh, I was
doing most of that already.
It just added a huge new component
to that of, like, always having
to, you know, think about, you
know, do I need to take more
grippy socks into the hospital?
Or later when Brad was learning to
eat again, we had a lot of
challenges with, like, the
hospital food.
So I was making, like, you know,
broth to take in to try to help
him eat.
And because there came a point
when it was clear that if he
didn't start eating again, he
wouldn't be able to survive.
So trying to, you know, coordinate
those teams, all of those things.
So such a, um, it's part of, I
think that's one of the challenges
is that caregiving had, you know,
there's no very clear job
description.
And for a lot of people, you know,
it took me a long time to even
identify as a caregiver.
And I think that's the case for a
lot of people.
And then it took me a long time to
realize, like, oh, all those
things I'm doing when I'm, you
know, opening those explanation of
benefits and checking them over
and making sure that, like, we
don't owe money.
And that I call the, you know, the
health insurance or I call the
home nurse to schedule it.
That's caregiving.
Like, uh, posting, we kept a blog
to keep people informed because so
many people were, you know, wanted
to know what was happening to
their friend, their family member,
cousin, everything.
But I didn't have time to text
everyone back.
So we kept that.
Communicating with people, that's
caregiving.
Keeping the home front warm, as it
were.
Before the person comes home or
when they're back.
That's caregiving, too.
And I think we underestimate a lot
of aspects of caregiving.
And reassurance and emotional, you
know, support for the person who's
sick.
You know, that's obviously also
caregiving.
Not just the hands-on act of, you
know, helping somebody out of bed
or activities of daily living,
like showering or something.
The amount of resilience and
adaptability and persistence that
it takes for caregiving is
remarkable.
And caregiving has such a big
funnel entrance.
I mean, so many different people
get funneled into the caregiver
role.
And their aptitude, their ability,
their strength, their coping
skills are all variable.
And we can understand how
different the story is.
But there needs to be a place for
stories to be told.
When you hit true caregiver
burnout, can you take us to that
moment when you just would have
been,
you would have given everything to
just escape your life?
What was happening that day in
that moment where you just sort of
threw your arms up and said,
I just can't be here anymore?
Oh, boy.
I actually remember one in
particular.
This was a few weeks after Brad
had come home from the hospital.
And we had a home rehab team for
him because he needed occupational
therapy, physical therapy.
They included a social worker.
There was a nutritionist.
There were some other team
members.
I can't even remember what.
But we also had, we had in-home
caregivers.
We had, you know, lots of people
visiting because now he was able
to be seen and talked to.
And he needed, you know, he needed
that social connection and to
reenter the world.
But the upshot of that was that
the home that had been the place
where I went to lie down and maybe
cry
or maybe just zone out in front of
the TV or whatever and have some
quiet and a little bit of space to
myself was now no longer my own.
It was a healthcare facility.
And there were people in and out
all day long, every day.
And there was a day when the
physical therapist, who was very
well-meaning and very good at her
job, but she had a spouse who had
also had a bone marrow transplant,
a stem cell transplant.
And he had not had nearly as
challenging a time as Brad had.
He had sailed through it more
easily.
It's never easy.
There's no such thing as an easy
bone marrow transplant.
But his had been less devastating
than Brad's.
And she called, she finished her
work with him and she called me in
or she called me in from the
kitchen.
And it was maybe 9 or 10 a.m.
It was at 10 a.m.
I'd already been up for four
hours.
I'd taken the kids to summer camp.
I'd done two loads of laundry.
I'd paid bills.
I'd made calls.
I'd gulped some coffee, but
probably not breakfast.
And there were like three other
people to have appointments with
Brad.
And I knew visitors that day and
all kinds of things.
And she calls me in.
And it was also a June day in my
home of Sacramento.
And it was going to be, the high
was going to be 106 degrees
Fahrenheit.
So it was a bit of a pressure
cooker there.
And she calls me in and she says,
you really should be making your
husband bone broth.
And I was like, what?
And she said, bone broth is very
healing for the gut and he needs
that.
And you need to be making him bone
broth for his healing.
And I was like, you're the
physical therapist.
You're not the nutritionist.
And she's like, well, I made it
for my husband.
And, you know, it was really
helpful to him.
And I was like, I was like, why
don't you stick to your job?
I was not.
I was very, I got very clipped and
very like, and I was really mad
immediately.
And I will also add that part of
this and part of the reason I felt
so unseen and angry at this
is that my professional background
is as a food writer.
And I had made him bone broth when
he was in the hospital.
And I had even like one of the
only little pieces of work that
I'd managed to do in months,
maybe a year, was write a short
thing on for a local magazine on
where to get like stewing
hens, like the old fashioned kind
of chicken that make the best of
that kind of broth because
they're older and their bones have
more of the essential, you know,
proteins and so on.
And you can long cook them.
So I'd actually written something
and I was like, I'm actually a
little bit of a subject
matter expert on this.
And you are, you know, not
mansplaining, but whatever
explaining to me about doing this.
And also it's none of your
business.
And also I'm already completely
overwhelmed and I don't want to
start a pot of bone broth
on 106 degrees summer day when I
have 20 other things on my to-do
list.
And so I got very cranky with her
and she was like, well, there's no
need to, you know, no
need to be like that.
And the next thing, the next
person that was up was the social
worker and I, and I
actually stormed out of the house.
I slammed the door and I took a
very fast walk around the block
and was just like, I may have
screamed a little bit while I was
walking around, but I was furious.
And when I got back, the social
worker who was there really to
talk to Brad was kind of
like, maybe today I should talk to
you.
And I was like, I think that would
be a good idea.
That was kind of around the time
of that already toast quiz, maybe
a little before, but it
was very, I just felt so
completely like not a person in my
life.
And I, you know, I felt like I was
just a factotum doing everything
for other people.
And there were other moments where
like, you know, medical people
would see Brad's name in
the chart and address me as Mrs.
His last name.
And I've never changed, I'd never
changed my name.
And I was like, that's not my
name.
You know, the things where it was,
where I felt so overlooked and
unseen and felt like, you know,
I'm a person, I deserve to live my
life.
I have a professional, I have a
professional life.
I have friends, I have kids.
I have a whole complex of things
besides being a vending machine
dispensing homemade bone
broth that isn't, you know, that
you're not the, when the
nutritionist tells me, then she
and I, we can talk about it.
Um, that was kind of the moment of
like a moment of very bad vibes.
Let's put it that way.
Well, I'm hearing as you were
still functioning, but you weren't
really yourself, but.
No.
Did it come to a point where you
just had to go numb just to
survive?
I think that point, I was pretty
numb for a lot of, uh, for a lot
of 2016, to be honest
with you, um, 2016 was kind of,
uh, the, our anus horribilis, um,
uh, where it just felt
like one thing after another.
And even after he was home and
doing better, then he got, he had
a second form of cancer
that was a complication of the
transplant and eventually had to
go to a, um, to do a clinical
trial in New York for a month.
And when he did that, that was
actually, that month started to
bring me back to myself
somewhat because his parents very
kindly and very generously
offered, they said, I could
choose whether I would go to New
York and be with him because he
was blind.
He couldn't, he couldn't have
navigated things on his own and
very severely immune compromised
still.
And he needed to be at Sloan
Kettering, um, in New York for a
month.
And they said it was for the
entire month of December and he
was coming home after Christmas
and his parents offered, you know,
they said, you can, you can either
go with him to New
York or, and we'll come out and
stay with the girls or, you know,
we'll go with him to New
York and you can stay home with
the girls.
And I, I chose to stay home with
the kids and have a break from the
caregiving.
And, uh, you know, it was partly
for the girls' sake because I
think they, I thought they needed
a parent after everything they'd
been through that year, but I
needed time that was not in
that medical setting.
But I, I did go numb and I think
it was, a lot of it was
self-protective.
I expected to be widowed.
And so I was like kind of pulling
back emotionally from the
relationship, but also there
wasn't
when, with somebody who's so ill
and, you know, is changing because
of the illness, there's,
it's very difficult to keep that
kind of connection that you have
with a spouse, if not impossible.
And so I was, I went numb in a lot
of ways and it was the only coping
mechanism that I
could muster a lot of the time,
but it was not often not a good
coping mechanism.
And I'll also say that, you know,
sometimes I numbed out with like a
drink or two or three
after dinner, because that was the
way to like just shut down from
it.
And that's very common with
caregivers and a very, you know,
it's maladaptive, but I try
to look back and forgive myself
because sometimes there's not a
lot of other coping mechanisms
out there.
Going back to that time in your
story, you wrote like after your
partner's transplant at the
time that you wrote that the man
you loved almost felt like a
stranger and that's almost
someone else came home in his body
or he was still in there hidden
somewhere, but there was
a new body that he had to contend
with.
What's it like to grieve someone
or the loss of someone when
they're still alive?
It's very hard.
I felt incredibly guilty for
starters and it was very hard for
both of us.
Of course, like he had suffered.
I don't want to discount the fact
that he had also, he had suffered
immense, immense trauma.
And so he was trying to cope with
his new body and his new self.
And I know that that's a process
that for him and for millions of
other survivors of cancer
and other ailments is still
ongoing.
And a lot of times the things we
needed and wanted at those times
were really at cross
purposes.
It was, it was really difficult,
especially because the expectation
was like, you must be
over the moon, that he's doing
better, that he's home, that, you
know, that he's back.
And I felt like he was sort of
back, but not really back.
And we had different approaches to
like how we wanted to repair, how
we wanted to reintegrate
into, you know, our lives.
There was only so much he could
take on in terms of, you know,
parenting, all kinds of
intimacy, emotional and physical
were enormous, enormous challenge.
And it just really, I think,
permanently altered the marriage.
I mean, I know permanently because
ultimately we tried a lot of
couples counseling and talking
and working through and trying to
repair things and came to the
conclusion that, that we weren't
suited any longer to being married
and we, we weren't going to
recover the marriage we
had and didn't have the capacity
to build a new one that served us
both in the ways that
we changed after this ordeal that
was like, and it's, it's also,
it's also so strange and
disorienting to go through an
ordeal with somebody and realize
that you went through
the same, the same series of
events, but it was a completely
different experience and
completely
different ordeal for both of you.
So it's like you're, you're
talking to each other from a
foreign country, even though it
looks like you're in the same
place.
When relationships rely on
connection and the illness and the
caregiving role seem to be just
fertile grounds for disconnection.
I can appreciate how much that
challenge, as you expressed, it
just comes to the forefront.
But when we think of caregiving
generations ago when it was
duty-based and you could be
completely
disconnected, but it was your duty
and that's what kept two people
together.
You could see where it might take
on a more seamless process, but
life's different today.
We want connection.
We need, we need connection.
We seek out connection in our
relationships.
We have different expectations of
ourselves and our partners in our
relationships.
Yeah.
And from what you're describing,
it's, it's the perfect storm.
It, it was a bit of a perfect
storm.
And I would also, you know, you
know, you know, we, we seek
connection, we seek mutual support
in partnerships.
And one of the distinct challenges
of spousal or partner caregiving
is that you lose your
primary support person as you are
caring for them because they
cannot offer you support because
you are supporting them.
And, you know, of course, you
experience and witness that loss.
And of course there's role
reversals or relational challenges
in any caregiving, a child, an
adult
child caring for a parent,
obviously the roles reverse.
And that's also, you know,
psychologically really and
emotionally really, really hard.
I mean, I would also point out
that aside from duty, one of the
things that often kept people
in care relationships in, in
generations and decades and
centuries past, um, is a lack of
other options.
You know, caregiving is often very
gendered, um, though, which is not
to say there aren't
millions and millions of amazing
male caregivers out there, but the
care expectations on women
are different.
And one of the things that I found
and was interested in, in my book
is that, um, you
know, it's, caregivers are about
60% to two thirds women typically.
And also women do more hours of
care and do more taxing caregiving
tasks.
Like the statistics show when they
do time breakdowns, there's an
every five years survey of
caregiving
in America that AARP and a partner
organization put out.
And the statistics are really
fascinating when you dig into them
and kind of review them.
I feel a gendered picture of
caregiving, but like in years, you
know, I'm a, I'm a student,
I was a student of Victorian, of
Victorian, um, the Victorian era.
And it's not like you could go,
you could go like leave, go do
something else.
If you were a woman caring for an
ill husband or, and you know,
there's, there's literature
about, about, um, you know, how
people get trapped, were trapped
in those sorts of marriages.
But to your point of like, you
didn't expect that sort of thing
from marriage back then is
also, I think, you know, really a
very good one.
And I, I do feel like, and I wrote
about this in my book that, um,
that a lot of the time,
a sense of duty and a sense of
like what I owed to my spouse kept
me going in ways that,
you know, I, I regret, I didn't
have more empathy and underlying
emotional care.
Once I'd kind of gotten into that
numb, somewhat almost robotic
phase of like, I just have to
put one foot in front of the other
and do this.
Like I probably could have been
kinder to him, to myself, to
people around me.
But I also, you know, it took me a
long, long time to come to grips
with feeling like this
relationship isn't what it, what
it was.
And he can, like when I, if he had
remained as ill as he was, I'm,
I'm quite sure I wouldn't
have felt like I could end the
relationship because he, when he
still needed that care,
I couldn't have done that and
abandoned him.
And in fact, interestingly, like
we were kind of coming out of
things in 2018, 2019 when he
was doing better and much more
stable.
And then the pandemic and the
shutdown, because he was still
immune compromised in 2020 and
2021 thrust us back into a really,
um, into the care dynamics that I
thought we were starting
to leave behind.
So it added this extra level of
complication just for, for us
personally.
And that, that's the time period
when I was actually writing my
book, um, which came out
in 2021.
I was doing, I was continuing to
work on it in the early days of
2020, which was a very strange
time to be writing about care
because care dynamics and politics
were sort of showing up
everywhere.
Imparting some lessons from, from
all of this to, to our listeners,
like what are the darkest
thoughts that caregivers have?
Like the ones that you can't even
speak about at the dinner table,
but they originate deep from
that state of suffering and anger.
I mean, I sometimes thought like,
I have a credit card right here in
my purse and I'm
behind the wheel of a car.
I could go to the airport right
now and get on a plane to Hawaii.
Like I could do that.
I never did.
But like that sort of like, I
could just leave all this behind.
And that's like, that's a level
above the very darkest thoughts
because we, we have stories
and, and, you know, every so often
you do see the shocking stories
of, you know, caregivers
who've given into the very worst
impulses to harm or even murder
their care, you know,
their, their charges, their, at
some point loved ones that who've
like just reached the absolute
end of their rope.
And I think there's some
interesting like horror movies or
novels or stories about that that
are
like kind of allegorize, um, you
know, those really, really dark
impulses.
And I, you know, obviously that's,
it doesn't need to be said, that's
never acceptable.
But I think that some of the, like
some of those really dark impulses
come from like the pain
and anger of having had to drop
everything in your own life for
somebody else's and for feeling
unseen,
for feeling unseen.
And also, as I kind of spoke to
briefly earlier, we have this kind
of, this toxic positivity mindset
or this kind of, you have to keep
a stiff upper, upper, upper lip.
You have to do your best for, um,
you know, you have to stay
positive.
And not acknowledging that
caregiving often will come with,
you know, frustration, that
it's a hard role, that it's not
always going to be sunshine, that
it's not always an honor
and a privilege to do this for the
person you love.
Like telling, I think telling
somebody who's been, you know,
changing a diaper for their parent
for five years because of, you
know, a degenerative illness is
saying like, it's, it's an honor
to care
for them is almost insulting
because there are parts of it that
are an honor and there are parts
of it
that are a huge drag and painful
and unpleasant and that you don't
want to do.
And like, I think being more
honest about those, those parts
and providing more support for
them and more support for
people's, um,
more difficult emotions is, would
go a long way toward, toward
leaving behind, you know,
helping people not get to the
point of having those very darkest
thoughts of abandonment or harm or
self-harm for that matter.
I think it's pretty fair to say
that toxic positivity doesn't cure
starvation.
I agree.
Yeah.
I particularly hated saying like,
ever hearing, you have to stay
positive because I was like,
there's a lot of things I have to
do and that is definitely not one
of them.
Like, I can feel how I want to
feel.
Like, I may have to go to the
hospital and sign this form, but I
do not have to smile.
Absolutely.
Do you remember, like, the moment
in time where that sense of
connection with your partner just
sort of shut off
when you realized you really
weren't a wife anymore, you were
just a caregiver?
I don't specifically remember like
one moment, but I do, you know, I,
it was probably in the days.
Maybe it was a season.
Yeah.
I think it was the days in the
wake of the, the transplant, um,
itself.
But I mean, it ebbed and flowed at
different times.
Um, all of his chemotherapy that
he had done in 2015 was in the
hospital over like several days
at a time.
So we would just be disconnected
like in time and in space through
a lot of his illness.
But, you know, during, throughout
his chemotherapy throughout 2015,
he was still physically not,
certainly not well, but able, you
know, able to walk, able to be
involved with the kids,
able to parent.
You know, we had Christmas at home
that year and, um, you know, he
surprised us all with,
you know.
Um, but we, we also had, we had
some different approaches to and
thoughts about like how to
handle the illness, how to, how to
talk to the kids about it.
So we had a little bit of conflict
about that as we, you know, went
through it.
So we were, we, you know, we
weren't always on the same page
about it as we were going through
it early.
And then when he, um, when he went
into the hospital for the stem
cell transplant, he was hugely
optimistic that he would be home,
you know, home in a month.
And, um, I felt like I really
needed to plan for a very wide
variety of scenarios.
And so he was the optimist and I
was, you know, he, he kind of
characterized it as pessimist
and I thought of it as realist is
like, you know, I'm the one left
holding the bag when the,
if the optimism doesn't pan out.
So I needed to have like a plan
ABC and like, think about like,
what are all the different
things?
And then he got so sick so quickly
after starting the, um, they call
it myelo, myelo ablative,
um, chemo and radiation
conditioning, um, prior to the
transplant to take his immune
system down
to zero.
And he was immediately in an
enormous amount of pain, very,
very sick and very, you know,
very kind of sunk into the world
of being ill, very understandably,
like he was suffering
terribly and, you know, couldn't,
couldn't reach outside himself.
We couldn't have like a
conversation.
I think it was at that point when
I really started to feel like the
only thing here is the care
relationship.
Um, and it came back, you know,
it's not like that was a
permanent, like there was nothing
else there forever after that, you
know, but through, it was many,
many, many months
before we could even have a
conversation that didn't, you
know, or where he would ask about
something that had happened in my
day, which like he had no
responsibility to do, by the
way, when he, let me be clear when
he was sick and, you know,
tremendously suffering.
But there was also a point in
later in 2016, you know, because
that was also a big, a big
year in the U.S.
A lot was happening.
There was a big election and all
kinds of things.
And I was, you know, engaged with
what was happening politically.
And there was a point after like
the election that year when I
realized like he had not known
that any of that happened.
I mean, he sort of did
tangentially.
And I would come in and I would
say something about like, oh, you
know, the nomination this
or, you know, what happened or
like big news in the world.
But he hadn't experienced any of
it or experienced any of the
things out in the world that were
like major that I had.
So it kind of like had this, you
know, continual effect of, you
know, disconnection and that we
were just living quite different
lives.
It's amazing how disease and
defining moments that call on
caregiving, they don't check
future
caregivers' resumes, what their
skill set is or anything.
And some might listen and say,
well, look, you know, she got
through it.
She's got, you know, caregivers
get through it.
It's not quite that
straightforward.
There's, there's so much involved.
There's so much uniqueness to the
situation, unique to the
individual and that without a
true lens on it, so much can be
left behind.
So many individuals can be lost.
Numb beyond repair, starved beyond
repair, disconnected, toxic
loneliness, even.
It's very humbling to listen to
these stories.
I think we're going to take a
break right now and take some
questions from our team and be
back
with you shortly.
So, Kate, there's this sort of
movement online of preppers and
people are prepping for all kinds
of things nowadays, like
environmental disaster, wars, the
grid going down.
Is there any way to sort of
prepare yourself for this level of
caregiving ahead of time?
If you have any experience, you
don't have the training, is there
anything you can do to sort
of prep for this?
Because a lot of people do find
themselves as caregivers at one
point in their life, the severity
might be different between
individual cases.
But is there any way to prepare
for what you went through?
I mean, I'm not sure that I would
recommend that people prepare for
exactly something quite
as extreme as what I went through
in the sense that, like, I don't
want to, you know, tell
people to live in fear that that's
going to be their future or their
reality.
But I do think that it would go a
long way just culturally and for
people who are future
caregivers, which is most of us in
one way or another, are going to
be caregivers or care
recipients or both.
Just to recognize that that's
going to be part of the life stage
and that you don't know when
or where it might be coming.
But, you know, if there were more
openness about the fact that there
are resources, that
there are advocacy organizations,
that there are things you can do
if you find yourself in
that kind of situation, whether
it's, you know, a crisis level
cancer diagnosis such as Brad
had or, you know, a long, you
know, a long span of dementia or
something like Parkinson's or
something degenerative, you know,
these are the illnesses of our
modern society.
Like people are not no longer, you
know, thankfully dying young from
childhood disease.
They're living long lives and
often what takes them is a, you
know, it takes a lot to beat
the skill of our physicians and of
our hospital, of our hospitals and
of our, of our, of our
medicines.
So people will go through more
difficult diseases.
I actually often reflected that,
you know, 50 years ago, this would
not have happened in my
family because there's no chance
that Brad would have survived.
You know, he wouldn't have had the
kind of treatment that he had and
there couldn't have
been that, you know, graph versus
host wouldn't have continued like
that.
So I think just recognizing that
these challenges may be in our
future, thinking about things like
having, you know, powers of
attorney or, you know, a community
support in place.
And being willing to ask for help
and think about asking for help
and networking early before
things get to the kind of crisis
level that I went through.
And I think that it would be great
in diagnostic settings, or it's
hard to say one, something
that's one size fits all because
the cases, as we spoke to earlier,
are so very different.
But if, if you're getting, I
remember when Brad got his cancer
diagnosis, we had kind of like
an onboarding session at the
cancer center.
They didn't call it that, of
course, but like an, a kind of an
orientation and he got a binder
and there were, you know, there
were some resources in it.
But, you know, if there were also
a binder for caregivers that gives
more resources and offers
more, um, a more realistic look at
what may be expected and, and more
openness, just more
generally, because caregiving so
often takes place behind closed
doors and it's very unsung.
And part of the reason I wanted to
write about it was that it took me
so much by surprise that
I think we need a broader cultural
conversation around caregiving.
That's part of what I was trying
to contribute to, to, you know,
make sure people understand
like, this is something that
shouldn't just land on every
family, like a grenade and a
surprise
because it's happening in almost
every family in one way or
another.
And if we're all alone, soldiering
through the challenges of that, we
can't band together
to advocate, to, you know,
commiserate, to support each
other.
So my, my answer is, is kind of
broad, but I think it really does
lie in some cultural shifts
around the way we think about the
challenges of care.
We're back.
We're in conversation with Kate
Washington, author of Already
Toast.
Kate, you alluded to some very
important things in your book that
you were doing a lot of things
right.
You were following the caregiver's
playbook, but why does respite
sometimes actually make
caregivers crash?
And what does the crash feel like
when you have to return back to
caregiving?
Is it even worth going?
I mean, I, I do think it's worth
going.
It's very, it was very, you know,
important for me, but I think
respite, it can be, it's so
difficult to access for many
people for a lot of reasons.
In complicated care situations to,
you know, often a care recipient
won't accept a respite
caregiver.
I mean, I'm particularly thinking
of like the scenario of, you know,
a crotchety older person
who doesn't feel comfortable or
doesn't trust anybody but the
caregiver they know and have
relied on for a long time.
And it is, it can be very, very
difficult to kind of let go of the
responsibility because,
you know, we have all taken it on.
But the, I think that often for me
to get through caregiving, I had
to stuff down a lot of emotions
emotions and just kind of like
power through the day.
And when I had the time and space
to sit with myself, those emotions
would come up and they
were often devastating.
One of the things that I learned
in kind of more viscerally after
writing the book that
was kind of counterintuitive and
surprising is that for a lot of
caregivers, the time when
they struggle the most comes when
caregiving ends, either because it
eases up because the
care recipient has improved and is
more independent or sadly in grief
and loss and like losing the
death of the care recipient and
that caregivers are at the
greatest risk of like high
depression
and anxiety and other, you know,
negative mental health challenges
at that time, not when they're
in the worst part of caregiving.
And it's complicated, you know,
there's a lot of reasons like
caregivers have also been shown
to neglect their own physical
health and diagnostics and things
because they don't have time for
that.
But I think even a short respite
can indeed like give you that
feeling of like,
oh God, I can't go back.
Like, it's too nice here lying in
my quiet hotel room without,
you know, without this happening.
And it, it can be a real, you
know, grind to, to get back
to it.
But I think, um, you know, what I
would say, you know, like the, the
only remedy for
that and, you know, it's, it's so
hard to do in the moment is to do
as much as you can as a caregiver
to process and acknowledge and
stay in touch with those emotions
and be, you know, aware of what
you're going through in the
moment.
Like for me, I was able to
continue, um, weekly therapy, you
know,
one, one weekly therapy session a
week.
And it wasn't like I was unpacking
any old issues.
It was just,
triage of, you know, a space for
myself to express the challenges
that I was dealing with
in that moment.
Um, if I could go back and do it
over again with what I know now,
I would have tried to start even a
five minute a day meditation
practice while I was caregiving or
a self-compassion practice, which
is something I've kind of, um,
read about and done a little bit
more
of, of like turning compassion on
oneself of like, don't look at the
reframing, you know,
don't look at the list of things
that is undone.
Look at the list of things that
you did and,
you know, feel good about that and
feel compassionate toward the
challenges of what I'm going
through.
Cause I often, even, you know,
I've described all of these, all
of these difficult times and all
of the,
um, the pressure on me and so on
and the severity of Brad's
illness.
But even going through that,
I often kind of thought like, I
don't have it so bad.
Like it could be worse.
He could be sicker.
This could be worse.
I've heard of worse caregiving
things.
And I think we tend to discount,
you know,
our own, or I was kind of tending
to discount my own struggle on
that or think like, oh, it's not,
it's not that bad.
Like I can, I can get through it.
Um, and I wish I'd found a, you
know, I had a good
support network, but, but treated
it as more of a mental health
crisis for myself that I needed
more,
you know, considered support in.
And, and, and much later I, I, um,
in order to kind of recover
and process from that.
And I also had some, um, before
Brad was ill, I cared for my mom
through some
mental illness and then, uh, lost
her pretty young, um, or, you
know, younger than I certainly
wanted to.
And I, I, my kids were really
little.
One was an infant when my mom
died.
And so I had some grief and, um,
you know, emotional fallout from
that caregiving and that loss that
I'd never really had time to
process that I already, that I was
bringing into Brad's crisis.
And so it was only later that I
did
some more intensive kind of
therapeutic work to try to process
all of that and, and work through
all of those things to, to kind of
get, come back from the burnout.
But the, the effects lingered for
I like that idea of triaging your
emotions and having a safe space
with a therapist who's,
who's, you've got a good working
relationship.
And I can imagine that was
important in helping save
you through the process.
But of the help you ever received,
was there any help that was fake?
how do you mean fake?
Uh, like, uh, or just unauthentic
or just not credible, or it was
just
sort of like offered, but, or
maybe help is not the right word,
maybe advice.
Uh, yeah.
I mean, there was definitely some
advice that was not, uh, that
didn't feel that helpful.
And
there, you know, I, I don't think
it's fake.
I think people do mean it.
But one of the things that I came
to
dislike as a caregiver was the,
um, let me know if you need
anything or what can I do for you?
Because that always like threw the
burden back onto me and I was
already overstretched.
Um, I ended up
having, you know, people who
started like a meal train so I
could point them to that.
But one of the
things that I've taken with me
into, you know, my post intense
or, or in between different bouts
of
caregiving, since I maybe will
become a caregiver again at some
point, but in the, the post
caregiving
period that I've been in for the
last several years, one of the
things that I've taken in,
taken along with me is, um, that
I, instead of asking, like, can I,
you know, how can I help you?
I say, could I bring a meal next
week?
Could I run an errand for you next
week?
Or give them an option
or try to reach out to somebody
who's closer to the person who's
going through it than I am
to ask what's really needed so
that, so that there's not the
further decision fatigue of like,
oh God, which day do I tell this
person?
Like we need to have, we need to
delegate even like
how to support people who are in,
in kind of that level of crisis.
Cause I think sometimes those
offers
well, very well meant do end up
being kind of the fake help.
And, you know, there, there are a
few
people I remember like, you know,
the physical therapist who made
the, who told me to make bone
broth, like that felt like very
fake help.
Like she was trying to help, but
it didn't feel helpful to me.
There were a few medical people
that I, I recall sort of
similarly, um, you know, who would
kind of
give me some advice about what to
do.
And I was like, this is not, you
don't know my life.
This is not
helping me.
Um, so, you know, I, I try to also
refrain from giving people advice
now if they're in that
situation.
Well, it almost sounds like help
jargon, right?
Yes.
Yeah.
The thing you feel you need to
say, but maybe you shouldn't say
anything and that silence may
actually be more helpful.
Um, when the
worst finally passed and the peak
crisis period sort of took a frame
shift, was your body and mind
still
on like high alert, how do you,
how do you detune all of the, the
tuning for what you were used to
and
try and reenter a next phase after
caregiving?
Um, I mean, again, I do think
that, um, if you can find
like professional mental health
support of some kind, like that
is, and I know it's not accessible
to
everybody that is really important
to like guide through.
Um, there's, there's a book called
Burnout
that talks about like breaking the
stress cycle and breaking through
the stress cycle in the body and
like, like literally releasing
emotion, the, the stored emotions
and the stored stress that, you
know,
build up for burnout.
And so for me doing like X
exercise, taking time for myself,
working through
things, having, you know, just
reshifting how I was living my
life was, was really important.
Um, took me a long
time to kind of move around into,
into those things.
But I think like, um, being
attentive to, you know, not just
trying to pick back up and go back
to the, the life that was before,
because things have altered is
actually
really, really important.
Um, and I, I sort of surprised
myself with something that I
started
doing in, um, I started in 2021.
Um, so quite a long time after
the, um, after like the real
crisis
time, but I was, you know, we were
coming out of the pandemic.
I was about, I was turning 50 the
following
year and I was like, Oh, what
could I, I hadn't so unhappy.
Like, and I feel, I still feel
strained
and overloaded and all of these
things.
And like, what am I going to do?
And I don't like the idea
of a milestone birthday.
I was kind of dreading it because
I wasn't happy with like where my
life was.
And I decided, but I love the
outdoors and the mountains and
the, you know, the places out in
California where I'm from that I
used to go when I was a kid and
used to take my kids when they
were
little.
And I decided to try to go to 50
different swimming holes or bodies
of water to swim or dip
or just jump in the cold water.
And I did that over like a year
and a half.
And surprisingly, just
the simple choice to do something
I love that was just for myself
repeatedly.
And I think there's
something about the cold water
too.
And like the, and nature really
helped me.
And that was like a
really, that was a huge part of
how I kind of found my way out of
being stuck in a cycle of burnout.
Because just as I'd been starting
to come out of it and, you know,
in 2018, 2019, like did some
traveling, spent some more time
with friends, like went on a yoga
retreat, did, you know, did more
things
with my kids.
And that was helpful.
And then the pandemic came and
everybody got into stress and
burnout or like almost everybody I
knew.
And so then had a sort of second
stage of re-emerging from it.
But that, that thing that I called
the 50 Dunks Project ended up
being kind of a big life shift
unintentionally.
It wasn't meant as like a big like
statement, but it ended up being
like, oh,
this is what I love and who I am
and how I keep myself happy and,
and like pulls me out of the mode
of burnout that I'd been stuck in
for literally years at that point.
I'm kind of a classic, like older
daughter over-functioner.
So, um, but your message is pretty
clear.
It took years.
It wasn't a wake up
one day and then it was years.
It was actually work.
It was self-compassion.
It was learning the small
footsteps of choosing something
for you and only for you without
necessarily being selfish or
having
your inner critic tell you you're
being selfish, but just something
to replenish the identity or maybe
nurture it with the things that
were, or have always traditionally
been important to you.
And I can
understand how that could make you
feel human again.
Yeah.
Kate, do you think caregivers get
post-traumatic
stress disorder?
I actually do.
Yes.
I don't know that I, I'm not a,
I'm not a diagnostician,
so I can't say disorder, but I
certainly think that they get.
Or we'll say post-traumatic stress
symptoms.
Or symptoms.
Absolutely.
I think that there's increasing
recognition that post-traumatic
stress can also be secondary for
secondary kinds of trauma.
I did write about that a little
bit in the
book and I'm sure I'm not familiar
with ongoing research, but at the
time there was some research
indicating and writing about that.
But even just as like one small
example, um, you know,
there are all kinds of things like
just that take me back, you know,
the smell of the kind of hand
sanitizer they have in the
hospital.
Like it'll all just go into, like
my body will tense up if I smell
that.
Um, we, our washing machine used
to make a little ding when it
finished its cycle.
And it
sounded very much like the ding
that a, an IV tower makes when it
needs that when the nurse needs to
come
and reset it.
And like it, both Brad and I would
just flinch when that happened.
I finally figured
out how to turn it off.
But I think there's, there's
physical returns to flight or
fight based on,
on, you know, stimuli.
And I think that you could, like
reminders going back to the same
places, getting,
um, you know, you can really get
stuck in the cycle of remembering
and, and being in
the stress of, that came from that
trauma.
And, you know, it's, it is
traumatic to watch our loved
ones suffer, especially to a very
high degree.
And seeing that and like seeing
that again in your mind's
eye, you can get stuck in that.
And I think that there's been
different kinds of, um, there are
different kinds of therapeutic and
other modalities that, you know,
can be really helpful for moving
through that, that kind of trauma.
Um, I, I did an intensive of a
therapeutic modality called the
DBT, but I've heard about, um,
people having a lot of success
with EMDR and, and, um, even with
some of
the, um, psychedelic therapies,
um, I think exploring different
ways to move past that trauma and
recognizing
it as like, this is legitimate
trauma.
You know, if you have sat bedside
as I did, like I had to sit
and hold my husband's hand while
his eyelids were being stitched
shut.
It was horrible to protect his
eyes.
Yeah.
Yeah.
And, you know, sometimes I see
that in my mind's eye and I, there
are things people
should not see and people think
things people should not go
through.
Um, you know, the patient
shouldn't, you know, it's, it's
greater trauma for the patient,
but it is still, I think, trauma
for the,
for the caregiver or can be.
Kate, you know, professional and
non-professional caregiving,
family caregiving
is facing or collectively are
facing so many challenges these
days.
We see it in institutions,
we see it in hospitals, long-term
care facilities.
We, we see it in educational
systems.
We, we witness it,
uh, in our families, but clearly
we're sensing that there needs to
be change.
their voices are starting to
mount.
We have organizations such as the
AARP, which, uh, and,
uh, other international caregiver
alliances, et cetera, that are
recognizing the footprint of
caregiving, not just in America,
not just in Canada, in Europe, in
Australia, in other parts of the
world as well, uh, in Central and
South America and, uh, in Asia.
we need to reach out.
Policymakers need to hear the call
on so many fronts.
If you could change one thing in
the system or if you could call
out to caregivers everywhere with
your
experience and craft a message to
mobilize people's energy and
people's thoughts so we don't get
50 signatures on a petition or on
a request to a local political
representative, but 500,000
signatures.
What do you think would make the
biggest difference?
Oh, gosh.
Um,
it's hard to make one,
you know,
policy type of prescription
because
as we discussed, everyone's
situation
is unique, but I think
a recognition of...
It's the building block.
Yes.
One building block, I think, would
be literal pay for home, for
family caregivers
and better pay and working
conditions and a caregiver's bill
of rights for both family
caregivers and in-home care
workers, care workers of all
kinds, because doing that would
recognize
the actual value of care, which is
immense.
It is, you know, care is, caring
for each other is part of
what makes us human and it's so
devalued.
Pay for anyone in the caring
professions is shamefully low,
especially like in-home
caregivers, many of whom are,
have, you know, difficult working
conditions,
precarious employment, and here in
the U.S.
are under, you know, all kinds of
legal threats
because many are undocumented
immigrants are being, you know,
it's, it's a very, very difficult
landscape and we also have for
family caregivers, you know, a
kind of flip side, um,
that the work is literally
completely unvalued.
It is not valued in terms of,
like, in the U.S.,
there is no universal paid family
leave for people to care, so they
have to actually lose money
often to care for their loved
ones, but there's very little, um,
any kind of, like, stipend or
care,
you know, provision for literally
compensating the caring work that
people do that is saving lives,
and doing that, like, not valuing
in a literal way care work that
then devalues the lives of, like,
our most vulnerable fellow
citizens, you know, the very sick,
the declining, the very elderly,
the people who have disabilities
that require a large amount of
care, that devalues that in turn,
and while I think we need, you
know, a cultural sea change to
think about the value,
one way to actually put a value on
it would be to attach monetary
value.
You know, we live in a society
that values money, and if we
support the things we actually
value with money, then it becomes
a
virtuous cycle of building a sense
of value because it's literally
valued, you know, and, and I think
that, for me, caregiver pay and
caregiver rights would be places
to start in hopes that the
cultural
change can follow, and I, I know
that, you know, the landscape here
is, you know, particularly dire in
some ways, and there are many
places, there are many places
around the world that are doing
better
by caregivers and thinking more
holistically about how families
and people can care for each other
in ways that are truly valued, and
it doesn't necessarily have to be
money.
It can be care networks,
it can be other kinds of support,
but money is a very obvious way to
say, like, we value this because
that is the, the thing in our
society we've all agreed has
value, it's money, so.
And for friends and family of
caregivers who might be listening
now, who are witnessing the
beginning
of a journey in caregiving for
someone they love or they know,
what would be the advice you would
give
them as friends and family of
caregivers about one or two things
they can do today that can help
meaningfully?
Yeah, offer, offer a specific kind
of help, send a text or a phone
call of saying that even just
recognizing what somebody is going
through.
One thing that, one little kind of
trick or thing that I
always now do or like to say
about, you know, if you're
texting, reaching out to a
caregiver who you
know is overburdened, say, you
know, no need to respond if you're
overwhelmed, but I was just
thinking
of you, you know, and then offer
some kind of practical or
emotional assistance.
you know, some of the things that
I remember, like some gestures can
be, seem so small or so,
you know, quirky, but can be the
things that like really change
somebody's day or somebody's week.
Um, I remember when Brad first
started chemotherapy, he had
horrible, um, taste changes, so he
couldn't
tolerate any metal, metal
utensils.
And a dear friend, like all of a
sudden a package appeared on my
front
porch and it was 500 compostable
plastic, uh, utensils, like spoons
and forks that he could use that
had no
taste.
And it was something that I would
have never, you know, thought to
go out and buy for myself or
couldn't have like mustered that.
He was just sort of suffering with
that, but that kind of like
seeing, I'd told
her that that was a struggle for
him eating and he, she saw that
need and kind of filled it.
And that was, you know,
just one thing that that
particular friend did for me, but
another friend, um, you know, our
younger
daughter was six years old and her
best friend's parents, when Brad
was really ill said, bring Lucy
over every Sunday, no questions
asked.
We will look after her all day.
And you can still hear that more
than 10 years later, I cannot talk
about that without choking up.
So offering something and saying
like,
feel free to decline, but can I do
this for you is so powerful and
can really change somebody else's
experience.
You know, there's even things like
I had friends who would text and
say like, Hey, I'm going
to Costco.
Is there something I can pick up
for you?
If so, I'll leave it on your
porch.
If not, no need to
respond.
You know, that is a kindness that
is, you know, send a letter, send
a card, send the text and
don't worry too much about saying
the wrong thing because nobody in
our culture ever really quite
knows the right things to say in
times of grief and difficulty.
Cause we're kind of bad as a
culture
at facing that, but the outreach
and the kindness is something that
people who are, you know, in a
challenging place with that will
not forget.
I think we survive with micro
moments of connection,
no matter what caregiving hat we
wear, but at the same time,
recognizing that it may be just a
horrendous day.
And if that text or that outreach
doesn't get answered, it doesn't
mean the caregiver
is blowing you off or isn't
receptive to hearing you reach out
another day, but maybe it was just
the
worst day yet and they couldn't
get back to you.
But I guess to those friends and
family, don't give
up.
Not hearing back doesn't mean no
one's interested.
Keep at it.
Yeah, agreed.
Kate Washington, thank you so much
today for joining us and for the
honesty and the language you
brought to
the conversation, a conversation
that so many people keep inside
living in silence.
For anyone who wants to
go deeper into learning about
Kate's journey and the climate and
the situation of, uh, where
giving caregiving, uh, stood at
the time and where it situates
itself today, uh, please do check
out
her book.
It's an amazing read.
I really did enjoy it and, uh,
it's captivating and certainly got
great
reviews in its time and, uh, do
check out her website and we'll be
happy to, uh, put the links for
already toast in, uh, the show
notes.
Thank you for today.
Thank you for your time, your
generosity
of spirit, and we wish you the
best in the next phase of your
journey.
Thank you so very much.
Kate Washington, thank you so much
today for your honesty and for
giving a language to what so many
people keep deep inside living in
silence.
For anybody who wants to explore
Kate's story, we've
linked her website as well as, uh,
the link to her book already
toast.
Stay tuned for her upcoming book
released this July coming up.
And thank you for being here
today.
We'll see you next time at the
caregivers podcast.
I'm your host, Dr.
Mark.
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
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Listening to this podcast does
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If you're facing a medical
concern, health challenge, a
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If you're ever in crisis, please
don't wait.
Call your local emergency number
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You deserve real-time help and
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The views you hear on this show,
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Thank you for being here,
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