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The cost & courage of caring - stories that spark resilience.
Welcome to this week's episode of
the Caregiver's Podcast.
I'm your host, Dr.
Mark Ropolesky, and you can call
me Dr.
Mark.
In sickness and in health is one
of the most familiar marriage vows
we make.
But when we say it healthy and
whole, do we really understand
what that promise can come to mean
when a partner becomes desperately
ill and one person ends up
carrying everything?
What happens to love, intimacy,
attraction, and desire when a
husband becomes a patient and a
wife becomes a caregiver carrying
everything?
Today we're speaking to Kate
Washington, who has lived that
reality.
In her new book, Midstream, A Life
Remade in 50 Swims, releasing July
7th, she writes about how
caregiving exposed long-standing
inequities in her marriage,
how much guilt and shame she
carried even thinking about
leaving, how much she feared
adding pain to her children's
lives, and how heavily the social
optics of separation weighed on
her.
But she also came to a harder
truth, that no one, including
herself, was taking care of her,
and that choosing her own life and
happiness was not an act of
selfishness, but an act of
survival before she disappeared
into caregiving completely.
And before we begin, please take
the time to subscribe to The
Caregiver's Podcast on Apple
Podcasts, Spotify, or wherever you
listen.
It's free, it just takes a second,
and it's the best way to support
the show today and for the years
to come.
Kate Washington, welcome back to
The Caregiver's Podcast.
We're so happy that you're back to
visit.
Thank you so much for having me
again.
It's an exciting time with your
new book around the corner.
We're looking forward to seeing
that being released.
You know, in the tradition of the
podcast, I like to jump right into
things, so let's go for it.
Great.
Kate, you've been through a lot.
Every marriage has its strengths,
its strains, and its fault lines.
But before your husband became so
gravely ill, what did your
marriage look like before
caregiving just took over the
situation?
Well, I mean, it had gone through,
you know, a lot of changes in
itself prior to the caregiving.
You know, we were married in 1999,
and my husband, my now former
husband, was diagnosed in 2015.
So we'd had a period where, you
know, we were young, married.
We met in graduate school.
We'd had a period where we were
young and married and both working
before we had kids.
We had our first daughter in 2005
and our second in 2009.
And so things had shifted over
that period of time.
You know, had to negotiate
childcare and, you know, equity
issues around that.
I was a freelancer.
He was a professor at our local
university.
And we'd also had a big shift due
to grief in 2010.
My mother died very suddenly.
That was very hard on me.
And I was doing a bit of
caretaking of her.
She had mental health struggles
for my whole life.
And she died by suicide, which was
a very, very challenging time.
And right around that same time,
you know, that happened when my
older daughter was four and a half
and my younger one was six months
old.
And right around the same time,
Brad took on a new role at the
university of chair of his
department, which was very
demanding.
And that was that combination of
things was a huge strain, I would
say, on us individually and as a
couple.
And we were kind of just getting
back into some kind of equilibrium
when he was diagnosed.
But it was a very different
equilibrium than we'd had before
her death and before having
children.
So as your husband's illness sort
of took over and you began
stepping into the role as
caregiver,
what was the first sign that
something in the marriage and that
new equilibrium itself was
beginning to shift?
Hmm.
That's that's a tough question,
because the the first of all, it
was, you know, slightly over 10
years ago that he was diagnosed.
So it was something that I wasn't
super aware as things were
shifting, because I didn't really
even immediately identify
necessarily as a caregiver.
Like there was a long process of
diagnosis.
I didn't really like think like,
OK, this is going to change our
lives.
Right.
I remember.
You know, one one point I think
that I would identify a little bit
is that we did start to have kind
of disagreements about how to
handle things around his illness.
You know, when he was first
diagnosed, it was very unclear
even what the cancer might look
like.
The doctors couldn't agree on
whether it was going to be an
indolent watch and wait kind of
lymphoma or maybe aggressive.
It might not even need treatment.
We both agreed that we wanted him
to get treatment, but we didn't
agree on like how to handle that
around like what to say to our
kids, how to like move forward,
particularly around like what to
say to the kids and like when to
tell them.
That was like a difficult decision
because they were quite young, had
at different stages, etc.
And then over the summer after a
kind of a crisis happened that we
talked about, I think, on the last
time that I was on, you know, he
it had turned aggressive very
quickly.
And he was hospitalized and he was
hospitalized and went into the
hospital seeming healthy and like
himself, though he was not.
Of course, he was quite ill with
cancer, but he seemed, you know,
as he was and came back home, you
know, 19 days later on oxygen with
a collapsed lung in need of like
IV antibiotics.
And that was a big stressor for me
because I was doing all of that
care.
And I remember the feeling of I do
remember a time early on where he
was kind of cracking a joke while
I was trying to do the do the IV
antibiotics and my hands were
shaking and we were just having
such different experiences.
It wasn't anything that was, you
know, necessarily conflictual, but
we were just having very different
experiences of his illness at that
point.
And it was such a big change.
And then over the summer after
that hospitalization, he had all
of his chemo as an inpatient.
So he was in the hospital five
days at a time every few weeks and
I was home with the kids and doing
things.
And I kind of started also, I
think, to turn a little bit more
attention in some ways during that
time to the kids because he was
being looked after by the nurses.
Of course, I would go in.
We would visit.
His parents were often here
visiting.
But we were really like our
experiences were quite different.
And I was, you know, very
concerned about the kids and their
their kind of stability, their
experience of it.
And he was literally not there.
There was also one time during
that summer when he was upstairs
for his chemo hospitalization at
UC Davis Hospital and I was
downstairs in the emergency room
with our younger daughter who had
croup.
And I remember thinking, like,
he's up there and he doesn't even
know that we're down here handling
this.
So we were just having really
different experiences.
And I also started to realize that
maybe what I thought was a fairly
equal marriage in terms of certain
kinds of labor and everything
wasn't as equal as I felt.
Because when that was removed from
the equation, I was like, oh, I'm
not doing that much more in terms
of, like, managing our joint
lives.
I was doing a lot more in terms of
managing his care, obviously.
But in terms of managing the kids,
the finances, the household, it
hadn't changed as much as I had
anticipated it would.
So you went from that phase of
clinical ambiguity, which is a
really tough place to be in
because, you know, a lot of
medicine is ambiguous at times and
there's not a clear cut path or
prediction on how things are going
to play out.
When you were deep in caregiving
for your husband as things
escalated, how did you take care
of you or how long did it take for
you to realize that this was not
just a brutal stretch, but a real
change in the marriage itself that
was now appearing?
Yeah, you know, it took a long
time before I started taking care
of myself or actually what
initially happened was that I kind
of insisted on getting some help.
Like his parents came to help out
some of those things, but I was
still not really perhaps as
engaged with self-care.
It's a little hard to remember
some of the details of exactly
when those things shifted.
I do remember, you know, I made
sure that I had a therapist, but
like I remember kind of a shift
where like the therapy went from
like healing from other things to
just like weekly triage of like
this is my only space to really
talk about this and really like
have for myself of like holding
that safe space for myself of the
therapy.
And I was also so busy taking care
of kids that my own self-care or
looking after myself was fairly
low on the list.
I did maintain, you know, a habit
of exercise and going to the gym.
I maintained some other, you know,
some other kinds of self-care,
reached out, friends started, you
know, bringing meals, things like
that.
But it did take a long time of
realizing like, oh, this is, this
is going to be a long, long, long
haul beyond the chemo, beyond,
beyond even the stem cell
transplant that he progressed to.
I do remember a very stark time
after, after the, that chemo, it
seemed like he'd gone into
remission and that was in
September.
He finished the chemo, I think
around Labor Day in September of
2015.
And by late September, the
subcutaneous tumors that he'd had
were back.
And he, you know, called up the
oncologist's office and said, you
know, these are back.
And they said, well, that would be
very surprising.
Like we, you were, the chemo
worked really well.
You were in remission.
And it did indeed turn out, you
know, they did a PET scan and my
birthday is in early October.
And I remember that we spent like
the dinner date that we'd planned
for my birthday.
On my birthday, we learned that he
relapsed that day.
And it was this moment for me of
like, oh, this is taking over
everything.
Because that, that relapse took
away the possibility of, you know,
that he might have been cured,
that, that an easier treatment
path going forward might be
possible.
And that was a moment of real
realization of like, this swamps
all the, even though a normal had
gone by the boards a long time
before, it was like, oh, we're not
going back.
We're not going back to the way
things were really ever.
And I think that one divergence
that we really had and that became
clear to me over the course, as we
for years tried to repair, was
that he always hoped that we could
go back to the way things were.
And I was always felt like we need
to forge an entirely new path if
there's any hope for this
relationship.
And I think that stemmed a lot
from the different experiences
that we were, that we were having,
you know, that, that he really,
understandably, you know, he
wanted not to have been sick and
traumatized and have his body
brutalized by this cancer and the
treatments in the first place.
And I was the one with the, you
know, I was the one with the, you
know, contingency plans and the
plans A, B, C, and D and thinking
about what would happen if he
died, which was a very real and
very likely possibility for a very
long time.
And I knew that if that were the
case, I needed to have, you know,
some kind of plans and some kind
of something in place to move
forward.
So it was a, it was very hard on
both of us, but in different ways.
You mentioned something earlier
about how you sort of tried to
keep to a routine of self-care,
but just keeping up with self-care
routines doesn't always translate
into a feeling of
self-fulfillment.
Did you find that that's the
position you were in whereby you
were going through the motions,
but you weren't getting the
return?
Yes, very much so.
And, you know, and a lot of the
things, you know, that I did, as I
said, you know, I was in therapy,
but it was just venting to get
through the week and get through
the next thing because I was in-
Talk therapy.
Yeah, I was in talk therapy, but
it was really kind of like, okay,
this is the place I have to talk
about this.
And in some ways it took the place
of socializing or of the time that
I normally would have had to, you
know, maybe get together with
girlfriends and, you know, have a,
like, we both talked and went back
and forth.
You know, a lot of socializing
went, you know, had to go because
I just simply didn't have the time
for it.
A lot of the normal interactions
and things that you would just
have in your day-to-day life that
give you space and that make it so
that I think some of those
self-care things like exercise,
you know, are more effective
because it's part of a complex of,
like, a balanced life.
You know, the, the other, the
things that I was able to maintain
started to feel a little bit more
like a Band-Aid and less like part
of a full, you know, full-rounded
life, if that makes sense.
Absolutely.
So you said that, you know,
caregiving almost laid bare
longstanding inequities and
problems in the marriage that you
didn't really fully see before.
Or what did caregiving reveal that
ordinary marriage life had never
really forced the two of you to
confront?
Yeah.
So much looking back, you know,
there were a lot of ways in which
I started to realize that our
conflict resolution skills were
not great, that we had moved on
from conflicts instead of actually
resolving them.
You know, we, I, I grew up in a
household with a lot of conflict
and I think he grew up in a
household without very much
conflict.
And so neither one of us really
particularly had great models.
And, you know, I don't want to
speak for him.
He may have a different view on
this, but, you know, I don't think
either one of us came from a place
where we'd seen a huge amount of
healthy conflict resolution.
Speaking for myself, I'd seen no
healthy conflict resolution before
I was married.
And so our conflict resolution was
not great.
And so some of those conflicts
were still simmering, you know,
when he got, when he got sick.
As I said, you know, I didn't
really realize the degree to which
I was doing the huge bulk of like
the mental labor, of the, the
planning, the invisible labor,
carrying the mental load.
Like I wasn't aware of that until,
you know, I thought like, oh, like
I'm going to have to take on his
part of this.
And then I realized like, oh, I'm
not taking on more because there
wasn't as much of a part.
A lot of, a lot of the things that
he was doing were, and believe me,
he contributed and he was, was and
remains a great dad, all of those
things.
But a lot of the planning, a lot
of the, you know, long range, you
know, signing kids up for summer
camps, making sure that we had,
you know, like auto pay set up for
the mortgage, whatever it may be.
Like all of those things, I was
kind of handling, thinking ahead,
doing the planning.
And he used to kind of make this
joke and that, you know, I was the
general and he was the sergeant.
Like I was the strategist and he
was the tactician, which implies
this kind of like, exactly what
I'm saying, that I was like doing
the, the larger family strategy.
So that was one.
And, and then, you know, and this
is, this is a bit painful, but I
think that I felt, um, it was only
in hindsight that I felt this.
But when I started to realize the
degree to which I was kind of
giving over my life to caring for
him in his crisis,
I started to feel that I had not
been cared for or looked after in
the same way in the biggest crisis
of my life, which was my mother's
death.
And the pain of that, of feeling
that, of looking back and thinking
like, feeling abandoned in that
moment was so great that it really
caused and still causes me pain.
And, and that, that, that gap that
I didn't even realize was there
and kind of had been growing as I
grieved her.
And, you know, 16 years on, I
continued to grieve her because it
was such a terribly traumatic way
to lose a parent.
And it was I who found her and it
was very, very difficult time, um,
that shift, that, that, that
distinction that I perceived
between how we cared for each
other was something that I found
very hard to get over or to, to
work through.
And then I imagine a realization
that the plate you would have to
step up to, to that next level of
caregiving was exponentially
higher.
Yes.
And, you know, and I, you know,
his care needs after the big, big
crisis, he, he recovered or not,
he was doing better and getting
more stable and, and gaining,
regaining a lot of function and so
on, um, after his stem cell
transplant.
But that took a long time.
And as we talked about the last
time I was here, you know, he came
home from the hospital from that
blind, uh, severely immune
compromised.
This was all in 2016.
He recovered his vision through
surgery.
So there were like shifting and
fluctuating care needs that went
on for, for years.
By about 2019, he was doing better
and we were doing a lot of couples
therapy and we were trying.
And I, I, I did feel like a lot of
the emotional work of that was
something that, that it was just
hard to take on more of that
emotional work after going through
the immense work of the
caregiving.
But it was, we were kind of making
some steps in that direction and
then in 2020, the pandemic really,
um, threw us for a loop and put us
right back into that caregiving,
um, care recipient dynamic because
he was immune compromised.
And it was, uh, it was, uh, it was
poorly timed for us and our
relationship, um, as it were.
When all that next level
caregiving came in and you
mentioned you were starting to do
some couples therapy in the
aftermath,
Did you feel it was still kind of
one-sided like it always had been?
I mean, I did.
I, I think that, you know, we had
different kinds of emotional
connection, emotional
intelligence, different, we, you
know, had different sorts of
therapy and different kinds of
backgrounds and everything.
And I just felt like we weren't
very able to connect emotionally
and it might have been that, that
really was the ultimate, like,
takeaway from what you asked
before of, like, what did the
caregiving lay bare?
Is that our emotional connection
wasn't maybe as strong, or I
didn't feel it as strongly as it
had seemed prior to his illness.
And, you know, I know because he
said so in, in sessions that, you
know, he really felt like he was
trying as hard as he could and I
felt like I was trying as hard as
I could, but I think we were just
missing each other a lot.
That I think that, um, the ways we
each contributed to the
relationship perhaps were not
forms of care that, that resonated
with the other one and it was
really hard to get those to meet.
So, Kate, tell me what happens to
love, intimacy, attraction, um,
desire when a husband becomes a
patient and a wife begins living
more as his caregiver than his
partner?
Um, it has to be put on hold and
it sometimes really withers.
And that was a very hard aspect of
the marriage, you know, in the
aftermath of his illness, during
and in the aftermath of his
illness.
And it was something I carried a
lot of guilt about that I didn't
feel the same kind of attraction.
Um, you know, his, his body for
him became a site of like pain and
torture.
You know, he was so ill, he was in
so much pain.
I witnessed so much of that pain
and some, some scenes in the
hospital and things that happened
to him that I wish I could unsee,
but I couldn't and I still can't,
you know.
And in part, especially I think
because we are no longer married,
you know, I want to respect his
privacy to the degree I can around
some of that.
But, you know, it's very, it's
very difficult, I think, to come
back from that, you know, and in
terms of attraction.
And it's not like a spigot, you
know, that you can, a tap that you
can turn back on or off.
And I do recall feeling, um, you
know, during the worst of his
illness, um, I, I just never
really thought that much about sex
at all, like for, for a long time.
And then, you know, when things
were getting better and we were
kind of trying to repair, it was,
it was really difficult.
And I realized that we hadn't had
great communication in that realm
to begin with.
That was another thing that as we
were trying to communicate and,
and, um, you know, rekindle that
part of our lives, the
communication there, again, I felt
like we just kept missing each
other.
And it was, it was really an arena
of difficulty.
And that was something we also
sought, you know, therapy about
and talked to a therapist who
tried to specialize in intimacy
issues.
And it, we just were having a
really hard time.
And then again, as we were trying
to work through that, um, all of a
sudden, starting in March of 2020,
we had two teenage, one preteen
and a teenager home 24 seven.
And, you know, they went to bed
later than we did.
And they were always home and we
all had a bedrooms on the same
floor of the house.
So that made a, that didn't make
it any easier either.
You can understand how caregiving
could put physical intimacy on
hold, but I think there's a
looming power of caregiving that
can lead to a very frank erosion
of emotional intimacy.
Which do you think is the most
dangerous?
I think that erosion of emotional
intimacy is the most dangerous.
Honestly, because if you have the
emotional intimacy and you
maintain the emotional connection
successfully in a way that, that I
did not do, you can get back, you
can reframe, you can rethink, you
can, um, I think, use that love
and that connection.
I, I, I hope and assume to have
the talks and have the, um, and
work together through, you know,
sexual issues.
There were, you know, I also look
at it, um, you know, to some
degree, I feel like the medical
system and, you know, one of the
points of my book.
And one of the things that we
talked about on, um, in our last
conversation is that, you know,
there are a lot of systematic
issues around caregiving that make
it harder for individual
caregivers, individual families,
individual patients to navigate.
And one of the things that I took
away was that while it is changing
in a lot of places, you know,
post-cancer care or post, um,
like, care after a really, um,
traumatic or devastating illness
often doesn't include quality of
life issues, count, as much
counseling, as much, you know,
sexual counseling.
As much, like, you know,
discussion of how, you know, you
can maintain that quality of life
because it, frankly, like, with
the level of illness that Brad
had, he was, when he survived,
like, him breathing a year after
his stem cell transplant was, he
was in the win column as far as,
you know, the hospital or the, you
know, the, the medical
establishment was concerned.
And, and, you know, he, you know,
he did get some, some assistance
and he had occupational therapy
and physical therapy and various
kinds of things.
But I think more wraparound care,
especially for, for couples, could
go some way toward this, you know.
Absolutely.
Yeah.
It's a huge rebuild for a couple
when you, when you witness that
sort of physical deterioration and
sort of walking that fine line.
You're wondering every day if, um,
today's going to be the day.
Yeah.
And, you know, to be perfectly
honest with you, when he was
hospitalized, you know, for four
and a half months, he was on the
verge of death.
You know, at one point his doctor
told me he estimated he had a 10%
chance of survival.
And looking at how sick he was,
that almost felt optimistic to me.
And I really started to detach and
I needed to, like, I, I kind of
pre-grieved, pre-detached, like,
kind of tried to build a wall
around myself.
And it was instinctive, not, not
conscious.
I think it was very damaging to
the relationship and to the
intimacy.
Um, and it felt like, you know, in
some profound ways he wasn't there
anymore because he was so, so very
ill and not really able to
connect.
Understandably, I'm not blaming
him for this at all.
Like, he was incredibly,
incredibly sick.
And I was trying to protect myself
against what I thought was going
to be the grief of widowhood.
And I, and raising our two kids on
my own and trying to support them.
And I was deeply, deeply worried
about them.
And, you know, I had therapists
for them as well.
And I remember calling each of
those therapists and saying, like,
what do I do to prepare these
young children, they were 10 and 6
at the time that I'm speaking of,
for losing their dad.
And fortunately, they didn't.
But, you know, I think I lost a
certain kind of emotional
connection and the caregiving that
I was doing became more dutiful or
obligatory than truly caring
because I had withdrawn, because
the pain of the whole situation
was, was so great.
And also the, the work of the
situation was so overwhelming.
So it was kind of twin things on,
on my part.
And even after that, there was a
point where he had a secondary
cancer that was a complication of
the stem cell transplant, where he
had a terminal diagnosis.
And we, you know, absolutely
thought he was going to die within
a few months.
And then he, treatment worked
better than expected.
And they found a clinical trial
for him.
And he rapidly turned around and
ended up being, like, recovering
from that cancer in a way that was
unexpected.
But there was a terminal
diagnosis, you know, and so it
was, you know, really a point
where, like, I already thought,
you know, the game of, I already
thought the marriage was over in
one way or another because I
thought I was going to be the only
survivor of it.
And, and, yeah, that was a
damaging, that was damaging for me
and for our connection, for sure.
Was that the specific caregiving
moment where you knew your
marriage had crossed a line and
was never going to feel the same
again?
It, it might have been, I think
there were a lot of moments where
I, where I felt like there, the
line, the line had been crossed.
It was probably, it was probably
really in, during the
hospitalization for his stem cell
treatment.
There was a moment where we'd been
jointly, you know, keeping a blog
to share with friends and family
because another aspect of
caregiving that's not often talked
about is that the communication of
it and keeping people informed is
also, like, a lot of work.
And so we set up this blog, you
know, I'm a writer, he's also a
writer, and it was an English
professor we met, you know, we met
in getting PhDs in English
literature.
So we were both, like, very
word-oriented, and we were both
keeping this blog, and within the
first, like, month or slightly
less than a month after his
hospitalization for the stem cell
transplant, he was still, we were
kind of alternating posting.
And there was a point where, you
know, he was on all these pain
medications, and he made this post
that, like, you know, of course,
it didn't make that much sense.
And I kind of had to say, like,
okay, we're taking away the, you
know, like, I'm going to be the
only one making these posts
anymore.
And that might sound like a small
thing, but in some ways it felt
like, okay, now I'm the one in
charge of this, and he's the
patient, and the relationship had,
like, in part because our, a lot
of our connection was built
around, like, words and writing
and all of these things.
Like, like, like, like, when I
took that over and kind of had to
make the judgment, like, oh, you,
you can't actually do this
anymore.
And, you know, one thing that in
spousal caregiving, as we're
talking about, or caregiving in a
romantic relationship, you know,
it changes the power balance from
equals and people who are, you
know, each other's support system
to one being the support for the
other and one kind of being in
charge.
Like, it changes, like, a kind of
a nurse, a nurse patient sort of,
sort of relationship.
And that, I remember that moment
of shift feeling very strange, but
also feeling like, okay, he's not,
he's not where he was anymore.
And I wasn't sure if, if or how,
you know, he was coming back.
There's something very powerful
about reciprocal connection, even
though it may not be identical,
but the experience of your other
and vice versa is, they're both
unique experiences for that
individual, but they also are so
unifying.
And you can see when that
disequilibrium occurs that it can
really be challenging.
Yes.
So, when you're caregiving for
your partner, what tends to start
eating away at the marriage first?
Does it exhaustion, the loss of
partnership, resentment?
I mean, I think in some ways all
of those things, every situation
is so individual I can't speak for
anybody else.
But for me, I think the lack of
choice that led to resentment, not
that I wouldn't have chosen to
care for my partner,
but like, this was not where I
wanted my life to be when I was,
you know, 42 years old with a
nine-year-old and a five-year-old
who'd just started kindergarten.
You know, I've often kind of told
the story of, you know, the first
day we kind of realized, you know,
and my first unwitting act as his
caregiver happened to be the day
our younger daughter, Lucy,
started kindergarten.
And I was like, okay, I'm there.
Like, I have reached the promised
land of my kids are in school.
I'm going to have more time.
My care responsibilities are
actually easing up, you know, and
my mother, because she was local
to me and she'd been so ill and
had had various health problems,
like, prior to her death, I had
thought, like, I would be caring
for her as she aged.
And, like, you know, of course, I
wish I'd been able to do that for
longer than I was instead of her
death,
but it did also take away a major
responsibility that I was kind of
dreading as I, you know, went into
middle age.
I was thinking, like, I would
become a sandwich caregiver and
then I wasn't going to be.
And so I kind of thought, like, we
are in the good times.
Like, we had gone through some
hard times with my mom's death and
with having little kids and we'd
made it out.
And the very first day she was in
kindergarten, he came in and had
these lumps on his jaw and said,
like, do you think I should go to
the doctor?
And he'd lost, like, 30 pounds and
wasn't, was, you know, having what
we later realized were night
sweats.
He kind of thought it was, like,
the flu or fevers or something
like that.
But some hallmarks of lymphoma and
it turned out that those lumps
were tumors.
And, you know, he said, do you
think I should go to the doctor?
And I said, yes.
And that's what set him down the
path to diagnosis.
And so I just hadn't thought that
I was going to be in this
caregiving situation.
You know, I was a freelance writer
and I thought, like, I'm going to
have more time to focus on my
work, on my things.
And all of a sudden, all of that
was gone.
And I'd been also, you know, in
the wake of my mother's death, I'd
been the executor of her will
jointly with my brother.
I'd done a lot of things around
her estate.
I'd had, you know, toddlers and
young kids at the time.
So I'd already put my life, my
work, my career, my wants and
needs on hold for years.
And the fact that all of a sudden
I was putting them on hold again
for something, a crisis, you know,
again, not of my making or
choosing.
And the sort of as the freedom to
do things that I wanted to do with
my day started to slip away, I did
resent it.
I didn't resent him for it, but I
resented the situation.
And I became, you know, angry
about being in the situation.
And that's a really hard balance
also because I think it's very
difficult, obviously, for the care
recipient, the patient, not to
feel like that resentment is
directed at them, even if it's
not.
Like, there's nowhere to put it in
a spousal relationship, you know,
when you don't want to be doing
this care work, but you also don't
want to abandon your partner.
And you don't want them to feel
like it's their fault because you
know it's not.
But there's no one and nothing to
be angry at, you know.
I think over time I got angry at
the system that kind of abandoned
caregivers.
And that's sort of the impulse
that led me to write my first book
was that anger at how completely
caregiving can take over lives
because there's so little outside
support.
But I think that I had to, like,
work through and think about,
like, where is that, what is that
anger properly directed at so that
I wouldn't be angry at my spouse?
But, of course, that kind of anger
has a corrosive effect no matter
what.
It's such a resonant point that
you're making.
We're seeing it now in so many of
the comments on social media, the
unclips with various guests and
people reflect and just submit
comments that they just feel like
they're not prepared.
And they are doing the work of
what they would otherwise expect
the medical system to be doing and
just keeps mounting and piling on
and piling on.
But, you know, getting back to
what you said, was there room for
any of your own needs, including
emotional intimacy or desire, like
once everything became about
caregiving for your partner and
his survival?
I mean, not a lot or I didn't feel
like there was a lot.
And, you know, there was a long
period where he was essentially
not, you know, even with the best
will in the world, he wouldn't
have been able to offer reciprocal
care because he didn't have
capacity for anything but being
sick because he was so incredibly
sick.
I will say that during a lot of
this period, my in-laws came to
California from Canada.
They stayed for months on end and
were incredibly helpful.
They did a lot with our daughters.
They became very close with our
daughters, which was actually like
one of the small silver linings.
You know, it was a kind of
closeness that I think long
distance grandparents often don't
get to have with grandchildren.
So that was like a really
beautiful outcome of that.
And my mother-in-law in
particular, I think, did her very,
very best to like support me.
She's she was a lovely woman.
She sadly has since passed away of
also of lymphoma of a different
type.
But that was very that was very
painful that she also had the same
or a very similar type of cancer.
And, you know, I really am, in
hindsight, very grateful to her
because I know, of course, that
she was having, you know, a
tremendously emotionally difficult
time with seeing her son seemingly
at death's door.
That was really difficult.
You know, my own mother, of
course, was gone.
I had dear, dear, dear friends and
a few, you know, an inner circle
that supported me that I will
never forget and never stop being
grateful to that I might not have
made it through without, you know.
So I did have, you know, help and
support.
But it didn't feel like there it
didn't feel like there was a lot
of space for me to put those needs
in the marriage.
You know, the caregiving needs
really took everything over.
And in fact, also, you know, the
emotional needs, even as Brad
started to be better before he was
as sick, of course, like he was
terrified and needed a huge and
like traumatized and having a
terribly hard time.
And he needed emotional support.
He was the center of it.
You know, there's, I can't
remember now if we talked in our
previous conversation, but there's
a concept of like the concentric
circles of like grief and support.
It was developed, the idea was
kind of developed around grief is
that the person most affected is
at the center of like the
bullseye.
And then the concentric circles go
outward and you support inward
toward the most affected person
and vent or dump or get support
outward from people who are less
close to the situation.
And I started to feel like that
model, which I read about prior to
this happening, but, you know,
started thinking about, you know,
as a spouse in an intense
caregiving situation, I was like a
bump.
I was like a mess, like something
that messed up the pattern of
those concentric circles because I
was kind of neither here nor
there.
I was like the support person, but
I wasn't the most affected.
Like for my friends, I was the
most affected, but within our
family structure, I was not.
Brad was clearly the most
affected.
You know, he was the patient.
He was the one facing this, you
know, terrible illness.
And it wasn't clear where I went
in that because I was the support
person, but like the person who
ought naturally to have been my
biggest support person was the one
most in need of the help and
support.
So it's a difficult role, I think.
And all kinds of caregiving come
with their own challenges in that
regard, you know, parent-child
reverses roles, things like that.
But spousal caregiving or
relationship caregiving has its
own very particular difficulty.
Yeah.
I read all the comments that come
in on social media and I am taken
aback by how alone people feel.
And you alluded to that circle of
close friends where you could just
be and express, tell stories,
vent.
Could you share with our listeners
what it feels like to experience
that moment when you can just let
go?
And if only as a call out to
encourage people to try and find
those couple of individuals in
their life so that they too can
experience that.
Oh yeah, I mean, it feels like
slipping into a warm bath or it
feels like the moment when you
turn over the pillow and you get
the cool side and you can like
relax again after you've been a
little like too warm or
uncomfortable in bed, something
like that.
You know, it feel, to me, it just
felt like, oh, okay, I can, you
know, take, you know, take off the
tight dress or whatever it might
be and just like breathe a little
bit.
It, I think caregiving is so often
an incredibly lonely experience
and it does often feel like nobody
else knows what it's like.
I think, you know, I think, you
know, you mentioning the comments
on social media reminds me also
that I think caregivers now, and
this has only grown since the time
I was doing it, you know, there's
so much online support and
community and solidarity available
that is like, doesn't matter what
time it is.
You know, you can almost always
find somebody on like a Reddit
thread or a Facebook group who,
you know, can respond or who will
respond by the next morning if
you, you know, vent your vent and
then go to sleep.
But finding those people who know
what it's like or who've been in
similar situations really is like
just the most tremendous relief,
you know, to see that experience
mirrored.
And it's a huge part of why I
wrote my first book.
And I will say that that book has
been out for five years and I
still get emails or still like
encounter readers who are like, I
thought I was the only one.
That comes up so often.
Yeah, and that's a big part of,
you know, why I tried to be often
kind of brutally honest about the
emotional toll that I felt from
caregiving in that book.
Well, that brutal honesty gives
question marks and feelings and
apprehensions and actual language.
And once there's a language to
formulate the thoughts about it,
then people could make progress
along that continuum of
understanding and building
community, being able to express
how they're feeling and
reciprocate and listen to others.
And that's where communities
built.
We're going to take a break and
hear from our production team who
are illustrious and curious and
always have good questions for our
guests.
You said something, Kate, just a
little earlier in the conversation
where you were explaining that
there was this anger that doesn't
really have a place to go.
And there's nowhere to put it
because you can't put it on the
person that you're caring for.
And even if you're feeling
resentment, logically, you
understand that it's not their
fault.
But that still doesn't alleviate
the intense anger and emotional
upset and conflict that caregivers
feel.
It reminds me, we've had a guest
on who's been looking after his
wife who has Parkinson's.
And often I see his social media
clips, his handle is held light.
Everyone should check him out.
But he often goes to the beach
every day and stares into the
ocean and then just vents into his
video.
And you can feel the anger and the
conflict.
And I can sense that he's
struggling to place that
somewhere.
So he's just trying to share it.
But maybe you could revisit that
concept of being angry but having
no place to direct it and feeling
like it doesn't deserve to go to
the person who's sick.
But where else can you really put
it?
Can you explain that a little bit
further, your experience with
that?
Yeah, I mean, I think for me, you
know, I say you I said you could
you can't really logically put it
on the person you're caring for.
To my regret, I can't say I didn't
because I sometimes did.
And, you know, not when he was at
his sickest, certainly.
But as we were trying to repair, I
think that anger that I'd stuffed
down or like pushed aside came out
in a lot of ways and not always,
you know, not necessarily
specifically related to the fact
that he was sick.
But like old hurts, old
resentments, you know, I said we
were we had not been good at
conflict resolution and I was very
much part of that.
I was not good at it.
And I also I regret to say my my
mom was a mean fighter and I
learned from the best.
And I, you know, didn't I didn't
always handle myself well in that.
And actually, in in my second
book, in the new book that I
wrote, I depict some of the scenes
of anger like years on from the
caregiving, like when I was really
angry and didn't didn't handle
myself well.
And I've tried to do some work on
that since.
You know, I think I've gotten I
think and hope I've gotten better
about it.
You know, at the time, you know,
putting myself back in those
moments in 2016, there were times
when I would just drive around and
scream in the car.
You know, I'm probably there
probably people out there who saw
me driving like, what is that?
What is happening in there?
Because there was just this free
floating anger around the whole
experience that, you know.
I didn't, you know, I knew that it
wasn't it wasn't right to direct
it, you know, at my husband.
But sometimes I wasn't great at
stopping myself once he once he
was doing, you know, somewhat,
somewhat better.
And, you know, but it also went
into, you know, in on sort of more
healthy and more healthy times, I
might like work out extra hard or
do something, you know, that that
moves the anger through and gives
it like a place to go, you know,
some kind of catharsis.
But there were lots of times I
didn't handle that well.
And I think, you know, that's a
really challenging conundrum.
And I think, you know, our society
maybe is not that great at dealing
with anger.
And I think there's a lot of
difficulty and maybe stigma around
being an angry woman in
particular.
That's it's not a good look.
Nobody likes to see it.
It's socially not that acceptable.
But so I really struggled with
that.
And, you know, trying to manage
that somewhat better has been a
big focus of how I've tried to,
you know, change and grow in the
wake of this experience, you know,
just to be to be candid with you.
It seems like to me, like, if you
have unresolved anger and you
don't have a great outlet for it,
it can turn to frustration.
And then frustration often I think
of my own.
I mean, I haven't gone through
anything similar to what you've
been through.
But when I've become emotionally
unregulated and I sort of take
that out on the closest people
around me, it turns into shame,
into guilt.
And so it becomes this whole other
thing that you have to deal with.
And that, of course, just piles on
everything else that you're
experiencing.
Do you think that's sort of a
common pathway for unresolved
anger or an anger that you can't
really find a place for?
Absolutely, absolutely.
Because I think particularly anger
around caregiving, you know, the
narrative of caregiving is like to
be self-sacrificing, that this is
a noble thing to do, that this is
like, you know, a good deed to be
doing, which it is.
But we don't in that see the kind
of narrative of like, it's also
really hard and it's going to
frustrate you and upset you.
And, you know, there may be
conflict, you know, within the
family.
There may be conflict like with
the patient themselves about like
how to proceed with treatment,
things like that.
And resolving those conflicts is
really difficult.
Like, and if you stuff it down,
you do get that shame and that
guilt.
Those are, you know, secondary
emotions.
And then those spiral on each
other and you don't want to admit
to anybody how bad you're feeling
or that you, you know, yelled at
some poor customer service person
on the phone because you were
having like, you know, the worst
day of your life.
And they'd had no idea or
whatever, whatever it may be.
I think it's, it is a really
difficult cycle or can be a really
difficult cycle to break out of.
And I think for people, and I'll
just, I'll just end here.
Sorry, Mark.
People who are listening to this
that haven't experienced it, like,
and I put myself in that camp,
really have no idea about how
difficult this is.
And it can be really easy to
listen to something and sort of,
you know, make off the cuff
judgments or, well, I would handle
this differently or whatever.
So I know we're going to get into
the optics of caregiving a little
bit later, but I'm assuming that's
something that's also really
difficult to deal with.
Yeah.
Yeah.
One thing you mentioned just now,
but it's, it's just one more thing
on top of those layers is that
extreme caregiving is also very
biologically dysregulating.
In terms of your circadian
rhythms, your hormones, your, your
cortisol levels, your oxytocin
levels, everything is just thrown
awry.
And then, you know, potentially
sleeping with one eye open is not
good for recovery.
Mm-hmm.
Absolutely.
And the more high-level medical
tasks caregivers are given, the
more likely they are to be told,
like, okay, this person needs,
like, I, you know, there was a
period.
With all the vast training again,
right?
Yes, yes, the 20 minutes of
training from the traveling nurse,
you know, you suddenly realize,
like, oh, he needs these
medications every six hours.
That means I'm not sleeping more
than five, you know, at a time.
Or, you know, you're in the
hospital all day, every day, you
don't have a chance to get, you
know, good food.
You often, like, I remember, like,
sitting by the hospital bedside
waiting for doctors to round and
being like, well, I can't get up
and go to the bathroom.
I can't go up and get a coffee.
I can't go up and get up and get
lunch because I know for sure
they're going to come while I'm
gone, you know.
And you never know when they're
going to come, but there is
sometimes a sixth sense for when
you've walked away.
And so you're sitting there under
the fluorescent lights,
uncomfortable, stressed, worried,
and, you know, extended stress and
worry, of course, as you say,
terrible for cortisol levels.
Caregivers also, you know, tend to
neglect their own physical health,
you know, because we don't have,
there's no time to go to the
doctor for yourself, you know.
Um, you might hurt your back,
helping somebody lift, you know,
if you're not, especially if
you're not properly trained in,
in, like, bed transfers.
I'm sure you've talked about all
of these aspects a million times
on, on this podcast.
But yes, it's, it is bad for your
health, too, in many ways, and
often very bad for, for emotional
health as well.
I want to thank Fred for some
amazing questions.
That just helps us build.
Kate, tell me, at what point in
the caregiving journey did you
begin to understand that your
feelings about the marriage were
changing?
And how possible was it to admit
to yourself that reality while
your husband was still fighting
for his life?
Oh, I had a very hard time
admitting that to myself for, for
years afterwards.
Um, I think I was dimly realizing
it along the way, but I was very,
you know, I was still very
committed to staying in the
marriage, to, um, to helping, you
know, to also, like, ensuring his
recovery.
It really wasn't until during or,
like, in the, the waning months of
the pandemic, and actually, like,
as my first book was coming out in
2021, I had really kind of started
to admit to myself, like, that I
actually wanted to, the marriage
to end.
I wanted to be out of it, but I
had so much guilt around that,
even, even, and that was, you
know, five years on from his
transplant.
But I did feel like the optics of,
like, oh, God, am I a person who's
going to leave a man who's been
this sick, were not only bad for,
uh, with other people, they, they
looked bad to me.
I didn't like the look of that
myself, you know.
And I felt very guilty around
that.
I also felt very guilty around the
idea that it would be more, um,
more pain for our daughters.
Um, but I think that the, the gap
between when I started to realize
that the marriage had irrevocably
changed and that, that it was not
fulfilling for me,
and when I admitted to myself that
I actually wanted the marriage to
end, was a matter of, it was
years, um, between, between those
realizations.
So what kind of guilt, what does
it feel like, what, being the
caregiver for a spouse who's been
so devastatingly ill while at the
same time finding yourself
contemplating leaving?
Uh, it's very, um, I mean, I felt
very torn.
I, I was, I stayed on the fence
about it for months, if not years.
You know, I, I wanted to be kind.
Um, I didn't want to, you know,
cause a huge amount of pain, but
there was kind of no way to do it
without pain, uh, it turned out
for, for both of us, for all of
us, for the whole family.
And even though our marriage is
over, I, I still consider us a
family.
And I should say, like, Brad and I
are on good terms.
We, we have one child who's still
at home, one who's in college.
And we co-parent on an equal
basis.
And that is smooth and good.
And actually, I think we're, we're
both much, much happier.
And even, even our, our kids have
said, you're both happier.
Um, but, uh, at the time it was
really hard to see that path
forward.
And, and for me also, a big
stumbling block for me was that
over the decade-ish prior to
ending the marriage,
I had already been through two
major, major crises, um, which
were incredibly hard on me,
in which I had the lion's share of
the management and of, like, the
handling everything.
You know, there's a lot of
paperwork even with these crises
and there's a lot of paperwork
with divorce
and there's a lot of logistics and
a lot of, like, hard stuff,
moving, changing the mortgage,
changing the title on things, you
know, figuring out, you know,
co-parenting, all of those things.
And I was like, am I really going
to walk into another ordeal of my
own making and buy my free choice?
I am tired.
I am too tired to do another one
of these and to mourn this.
And it took months for me to work
through that and think, like, and
realize and really,
I guess, take in internally the
idea that I was going to be facing
pain and a crisis either way.
Either the pain of being, like,
desperately lonely and unfulfilled
in a marriage that was,
that had become kind of a marriage
of roommates and not a
particularly smooth one of those.
Or the shock and crisis of ending
the marriage, reforming separate
lives and having a chance of doing
something different down the road.
Like, either one was going to come
with suffering for everyone.
And it was a question of what kind
of suffering I wanted to have.
And I ended up having to choose
the one that was a little more
time limited by, you know, getting
out of the marriage.
So many caregivers listening to
this may feel actually angry
hearing that you left, that you
chose yourself or that you found a
way out of a life they feel
trapped in.
So on the surface, that can feel
like the ultimate betrayal.
But underneath it, it may touch
something they barely let
themselves admit, that they wish
for relief, escape or a life that
still belongs to them.
Yeah.
If someone listening recognizes
that, and they recognize
themselves in that, what do you
most want them to understand?
Gosh, that's a tough question.
And as you were asking it, I
actually recognized kind of a
defensive impulse in myself just
to say, like,
but I didn't leave when he was
really sick.
Like, he didn't need a caregiver
anymore.
I think that's a point of
clarification for sure.
I think it sets the stage, right?
And there were also ways in which
I felt like we'd gone into this
very entrenched pattern where I
was the caregiver and the manager
of everything.
And I was begging him to rise to
the occasion more and be a more
active participant in our lives.
And because our dynamic had so
completely shifted, that was never
going to happen while we were
still married.
And lo and behold, now that we're
not married, he does manage all
the things that I was begging him
to manage while we were married on
his own for his own household.
But, you know, he did still need
some support.
He is, you know, he does have
chronic illness as a result.
And there are, you know, he has
ongoing health needs, many of
which are self-managed.
But some, you know, do, I think,
need some support and care, though
not a full-time caregiver as I
was, you know, back in 2016, 2017.
So it's a vexed question in some
ways because I don't think I would
have had the courage or the, you
know, what would have felt a
little like callousness to leave
if he had stayed as ill as he was.
You know, if he still had no
vision, if he was still as immune
compromised.
But to your question, you know,
listeners who may feel angry and
trapped, hearing that, I felt
angry and trapped in that way.
And I did have those dim
realizations of like, how am I
ever going to get out of this?
Where is this going to end?
When am I going to have a life?
And it was, you know, I think to
people who are in that situation,
I would say, you know, it starts
with some steps of carving out,
carving out spaces, setting some
boundaries for yourself to the
extent that you can.
And it's never easy because it's
always going to feel hard.
And you may also meet with
resistance from, you know, the
person you're caring for.
But there's always, there is space
to take days for yourself, take,
you know, like find alternate care
at some times, like hopefully
find, you know, some other way of
managing certain aspects of life
so that you can have some time and
space for the things that you want
and need to do to maintain who you
are.
You know, I really went so far
away from, from maintaining the
connection with myself and with
what I wanted to be doing and how
I wanted to be spending my days
and my life.
And I had, and past the point when
my, like the intensity of my
caregiving needed to be as intense
as it was, I was still in that
heightened, stressed, cortisol
driven state for a long time.
And it was not until I stepped out
of that and found a little bit of
a way to take space for myself
that I could kind of see a little
bit of light.
And it's also difficult because,
of course, everyone's care
situation is different.
And for many people, it's like a
degenerative disease or a, you
know, or something that will never
improve.
And in Brad's case, he did
improve.
And so I recognized that I have,
you know, some, I had some luck
and privilege in that.
And like, that was a, you know,
and our, our family, he, he is the
better for our kids are, are
better off for that.
And, and that was, you know, I was
not in that space of like really
intense grief and loss that so
many people who are in a long or
really intense caregiving journey
find themselves.
So I want to extend, you know,
that recognition and also, you
know, compassion and, you know,
really heartfelt sympathy to
people who are in that situation
because it is brutally hard.
And there is no one size fits all,
right?
As you mentioned, you had these
pounding crises, which sort of
appeared on the grid and then sort
of leveled out afterwards,
whereas others are just sort of
going on this long trajectory
without necessary, with a few tiny
spikes in between,
but just progressive erosion over
time that's just cumulative.
And as to your point, everybody's
different.
How much did your children shape
the way you thought about staying
or leaving,
especially when you were trying to
sort of weigh the pain of
separation and how that might then
cause pain
and what its actual cost might be
versus the cost of losing yourself
any further?
So much.
That was, that was the most
painful part for me was
considering the impact on them.
That impact kept me in the
marriage probably a couple years
longer.
The thought of that impact
probably kept me in the marriage
longer than I would have stayed
otherwise.
But ultimately, it was because of
them and because I realized that
we were giving them a terrible
model for what a relationship
should look like that I left.
Or that I, that we separated, that
I did not physically leave.
I'm still in the same, same, same
house and so on.
But, but it was because in
particularly because, in
particular because I have two
daughters and because I realized
looking back,
like, you know, I'd never seen a
really functional marriage up
close.
My parents didn't really have one.
They actually divorced when I was
a similar age to what our older
daughter was when, when Brad and I
separated.
And not wanting to repeat that
history gave me so much, like,
guilt and anxiety about the
thought of ending the marriage.
But I actually describe in the new
book, there's early, very early
on, Brad and I were, we were going
to a family cabin that we have and
we were going to see my family and
we had this stupid fight on the
road.
You know, it was one of those
fights that a couple has that,
like, is sparked by something that
is absolutely inconsequential but
turns into a rehash of, like,
every single fight you've ever had
in your whole life.
And, you know, our older daughter
spoke up from the back seat and
was like, you're both wrong and
called us out and was like, you're
both being terrible.
And that moment was this kind of
galvanizing thing for me of, like,
I can't do this anymore.
I can't show them that this is
what it looks like.
And I also, like, not only the
conflict that we were subjecting
them to, but also the feeling
that, like, marriage means giving
yourself over, leaving no space
for yourself, not having your
needs met, not having, you know,
love and affection displayed
regularly.
I didn't want them to grow up and
see, think that, like, that would
be the way to be married and to
have a family.
And ultimately, I kind of applied
that old test of, like, if my
daughter 20 years from now came to
me and said, this is what my
marriage feels like on the inside,
would I tell her to stay or would
I tell her to go?
And I would say, I would say, run.
And I didn't want my daughters to
be where I found myself.
And I imagine they're enjoying a
much better version of you today.
I think they are.
I think they are.
And we had a hard, hard time
because they were at difficult
stages.
You know, they were just preteen
and teenager.
And they were angry and they'd
almost lost their dad once.
And then they lost time with him
because of the separation, you
know, because it wasn't, you know,
wasn't all of us together all the
time.
And they were, you know, frankly,
angry at me.
And I understood why.
And I, and I, that was a very
painful part of the separation.
And there were times when I really
kind of despaired and thought,
like, I have broken something
between me and them.
And some of those dear friends
that I spoke about earlier said,
you know, they're at tough ages,
they'll come around, it'll come
back, just stay the course.
And I had to, you know, I had to
also do some, you know, healing
and work and become, you know,
become a happier and more
fulfilled person.
But I think I'm like a better,
more present parent to them and
the mood in our house is lighter
and like, you know, we have a
better, I think, and hope
connection now.
And we've, we've talked a lot more
about, you know, what those years
were, were like the, you know, the
time they both had very different
experiences, of course, because of
their different stages of the
years of the really intense
illness.
And we've talked much more about
that.
But I think they've come to a
little more understanding of what
that was like for me.
And there's been a lot of repair
that I'm, like, deeply, deeply,
deeply grateful for.
I'm sure it came with a lot of
effort.
But they're, they're, they're
great, and they're really
resilient.
And that's, you know, it was
effort, but it was absolutely, you
know, labor of love.
So.
How much did the social optics
matter when you were thinking
about leaving a marriage in which
she played such a strong
caregiving role for someone who
had been so ill?
Like, how are you aware about how
other people could spin that and
turn that into gossip judgment and
a story that villainized you?
I was highly, highly aware of it
and quite worried about it.
And it also coincided with the
year following the release of my
book, which ended on a very kind
of ambivalent note about the
marriage of not being sure what
would happen.
Because there's, there's a lot
about, you know, the problems in
the marriage in that first book.
And, you know, I remember telling
one person and they said, like,
well, having read your book, I'm
not surprised.
But I will say that, like, over
the course of the, the months
following the release of the book,
like, one of the things that I was
conscious of is, like, oh, this
would be a bad end to the story.
Like, I don't want to go out on
book tour and answer questions
and, and with, like, and then,
like, the marriage is no longer,
is no longer happening.
We are, we are done.
We are in the middle of
separating.
And eventually that did come to
pass about a year.
We separated about a year after
the book came out.
Um, you know, I had a lot of, I
had a lot of anxiety about it and,
um, it didn't turn out to be a big
deal, honestly.
Like, people, I mean, probably
there were people who've gossiped
or whatever and, um, that's fine.
They're entitled to their story
and their opinion, I guess.
Um, you know, nothing that, like,
blew back in a way that was, you
know, super painful for me or,
like, where, you know, I got in
trouble in some, you know, cosmic
court of judgment that I know of
so far.
Um, and I've been surprised by,
you know, people, you know, if I'm
talking, you know, doing
interviews, you know, like this
one, I find that people are,
people are pretty understanding,
especially people who've, who've
gone through it.
So I spent a lot of time worrying
about that.
And then at a certain point it was
like, you know what, I'm, I'm 49
years old.
I get to make decisions for
myself, which is the age that I
was at the time.
Um, and, uh, you know, I, I came
to care less about social
opinions.
Um, and I probably care even less
now about, I mean, I care about
what people think in the sense
that I don't want to be a terrible
person to anybody, but I don't,
you know, what, what strangers
think of me.
I, I've sort of come to the idea
that it's, it's really none of my
business in some ways, like
everyone's entitled to their
thoughts, you know, so.
Getting back to self-care, at what
point in the caring journey for
your husband's, did you realize
that no one, including yourself,
was actually taking care of you?
Um, I think the, the moment that
was the, the most, um, or, and
this is a story that I have told
before and it's the source of the
title of my first book.
of Artie Toast is in, like, at the
month following his, uh, discharge
from the hospital, you know, I
took him to a doctor's appointment
and I just started, like, weeping
through the, over the course of
that appointment.
And his oncologist who, you know,
saved his life dozens of times
over and is a wonderful, wonderful
doctor, um, and, but I did not
always love his bedside manner
with the caregiver.
Or maybe he was great with Brad
and maybe a little, I, I had a
couple of things with him and this
was one of them where he kind of
looked at me at the end of the
appointment and he's like, are you
taking care of yourself?
Because if you're not taking care
of yourself, you can't take care
of him.
And it, I turned from, like,
feeling really sad to really angry
because I was like, oh, like, this
is now an assignment?
Like, my, I don't have, I don't
have time to take care of myself.
And then I kind of realized, and,
you know, very few people are
attending to that.
And there were people who were,
who were offering me care, but
there was a way in which I felt
like I wasn't, I wasn't like the
top priority for anybody,
including myself.
And after that appointment, I went
home and Googled to look for, he
was like, go look for, you know,
support group or something like
that.
And I went and Googled and
stumbled on a quiz about caregiver
burnout and got the result, you
know, when I took the quiz, you're
already toast, like, that I was
already completely burned out.
And I, I actually, you know, noted
that and was like, title of my
memoir, and it became the title of
my memoir.
And that was a moment where that
kind of deeper realization of
like, oh, like, I'm expected to
care for myself, but even caring
for myself was framed as
instrumental for caring for him.
It wasn't really caring for me.
It wasn't about me at all.
It was about my ability to keep
going and keep soldiering on to
provide the care that the main
patient needed.
It was just like, it was just like
an oil change or something so the
car can keep getting you to work.
It wasn't because you wanted the
car to be like a beautiful,
restored, vintage something or
other that was like really well
cared for.
It was just like, this is basic
maintenance so that like it can do
its job.
It's interesting how you sort of
change the tone of your voice to a
very patronizing tone when you
recount having heard that advice.
Do you think that's a common
thread in a lot of caregivers'
experiences?
I think probably so, and I hope
that's changing.
I mean, obviously—
There's a push to have it change
for sure.
Yeah, yeah.
It needs to.
I hope that—and I've heard of this
changing, you know, and caregivers
being included more as like part
of the care team and as partners
in care rather than as, you know,
the family member.
I do write about this in, you
know, my—in the first book that
like I started kind of to really
try to alter my self-presentation
so that there would be like more
respect for me as a caregiver, you
know, that I would put on a dress
or like, you know, there was one
time when somebody was really,
really condescending to me in the
hospital.
It was a resident, actually, and I
got really angry and like she kept
calling me Mrs.
and then using my husband's last
name, which has never been my last
name.
And I just sort of was like,
that's not my name.
And she's like, well, what would
you like me to call you?
And I said, you can call me Dr.
Washington because I do have a
PhD.
And I don't generally use the
title doctor socially or
professionally in any other
context.
But I was like, if you're going to
condescend to me, I'm going to do
it right back and try to get some
respect back for myself.
So I don't know how well that
worked.
But I do think and hope that that
is changing.
But I'm sure many caregivers in
the audience have had that
experience of feeling patronized,
pushed aside, you know, seen as
kind of an inconvenient but
necessary, you know, appendage to
the patient.
It's understandable.
Kate, how do you know when staying
in the caregiver role is no longer
love, but just self-abandonment?
Oh, I think that's probably
different for everybody.
But I think, you know, I think
it's closely linked to burnout.
And, you know, if you like, like,
if your coping mechanisms are all
maladaptive, you know, if you
like, and full disclosure, you
know, I started to drink more,
like during the worst of it, I
stopped, you know, some of the
self-care that I was doing was
less good and more and more
difficult.
If you're not sleeping, if you're
not pursuing any of the interests
that you had before, if there's no
time for, you know, whatever you
loved prior to the caregiving, you
know, if you're short with people
all the time, if you're irritable,
if you're looking at this person
being like, I guess I've got to
change those sheets again or
whatever, whatever the task at
hand may be.
And it's all frustration and
little motivation of actual care
and, like, wanting to, you know,
interact, connect, find those
moments with the person that you
began caring for out of love.
You know, no interacting in a
loving way that you don't have
that to give because you're so
stressed out and, like, pulled to
the brink, then, you know, it is
time to, if not reassess whether
to be in the caregiving
relationship, then to reassess how
to be in the caregiving
relationship.
You know, you may not be able to,
you know, you may not be able to,
but you may need to find a way to
put a few more boundaries in place
to find more space for yourself.
And, I mean, that's, even though I
was not in a full-time caregiving
role, that is, like, what I
started to do in about 2021 that
ultimately, like, I started
carving out much more time and
space for myself.
And ultimately, that led me to
make the kind of changes that I've
been talking about, one of, you
know, the biggest, the biggest,
most obvious one of which was
ending my marriage.
But it was really, like, a big
shift, like, in the way I lived my
life and how I lived for myself,
what I, you know, what I do with
my time and my days and how I,
like, connect to myself and kind
of brought me, I didn't realize,
but I kind of brought, came back
to a self I hadn't been for many
years.
It's a learned skill, like
everything else, and it's amazing
when some people come to realize
that it's a skill that you're
trying to develop stacked against
years and decades of patterns
where boundaries were not set.
And it becomes difficult to put
one foot in front of the other and
make progress, but community,
connected communities and support
and those kind of things can
definitely make the difference.
You know, I think against all the
odds, your husband survived, but
the marriage ended.
How did you understand or begin to
understand that his survival did
not mean that the marriage would
survive too?
Hmm.
I think it was gradual over the
course of everything that, you
know, we've been talking about.
In some ways, writing my first
book was a very, was an
eye-opening experience.
Like, as I, you know, explored it,
explored what had happened to and
with us and to me in a more formal
way, it gave, like, I literally
was giving myself language for
analyzing it along, along the way.
And that was kind of helping me
see where some of the cracks and
fissures were.
And, like, you know, I'd explored
it in therapy.
We explored it in some couples
therapy, all of which, as I've
spoken to, was, was very
challenging.
Like, we just didn't do that well
in, in couples, in couples work.
And, yeah, starting to kind of
narrativize it and think about how
I was, how I was acting in the
marriage, what was causing that.
And, you know, there was, there
was so much, so much had happened.
And taking, once things, like,
kind of quieted down and he was
doing better and wasn't in need of
that care, that's when it all
came, like, that's when kind of
the reckoning came was a long,
long time afterward.
And I was struggling a lot with
the, with the emotions around
that.
But it, it was definitely a
gradual realization.
But when I started really, like,
you know, looking at it more or
started coming more to a much, a
clearer understanding of that and
of what I wanted and what it would
take to get there was when I
started, like, setting those
boundaries and carving out that
time for myself.
And that's what I, that's what I,
that's kind of the, the subject of
my new book that's coming out.
I started almost on a whim on, I
was 48 and a half and I was, like,
staring, like, looking to the
horizon of turning 50 and
thinking, like, my life is not
where I want it to be.
I don't even know who I am.
I don't know what I do.
I was kind of burnt out to a crisp
and, like, creatively, you know,
emotionally, physically from the,
the years of the caregiving.
And I was, like, what am I going
to do to, like, feel better about
turning 50?
And I decided to, like, like, I'm
going to go to 50 different places
to swim or get in the water
because I'd always loved the water
and swimming.
And that, it would, I almost
picked that just on a whim.
It was, like, oh, well, this
sounds fun.
Like, this actually sounds like
some fun.
And I hadn't had fun or done
anything, like, joyful or just for
pleasure in years.
I mean, I'd had some fun along the
way, but, like, our marriage
wasn't fun.
There wasn't, you know, it was,
there was a lot of hard work of
trying to, like, put things back
together.
And it didn't, it didn't feel fun
or joyful or light at all.
And so I did something that was
joyful and light.
And it felt like, oh, this is
just, like, like a silly little
quest.
And it turned out to be actually a
much more profound experience
along the way, in part because it
took time.
It took, like, whole days often.
It prioritized me.
It was just something that I
loved.
And along the way, I was, like,
oh, I could be doing other things
that I love.
I could be having fun.
I could be, you know, I actually
had, you know, my kids weren't as
needy anymore.
Brad wasn't as needy anymore in
terms of the care.
I was, like, I don't have to be
grinding away in, like, this kind
of, like, martyrdom and misery all
the time.
Like, I could be taking the time
I'm spending on that and on my
resentment and turning it into,
you know, good days.
And that realization came
gradually as I did it.
And I wouldn't say, like, oh, you
know, I went swimming and that
made me, and then I, you know,
woohoo, I decided then to get a
divorce.
It wasn't really like that at all.
You know, it was much more gradual
unfolding.
But taking that time, you know,
and that was a very personal thing
to me, but taking that time and
finding that pleasure for myself
brought me back to kind of a self
I hadn't been really since I was a
little girl.
And I now look at it as, like, it
wasn't just my marriage and the
caregiving that was a form of
self-abandonment.
I'd been doing a lot of
self-abandonment all along, and
the caregiving was the pinnacle of
it.
And I was trained in abandoning
myself in various ways from a
young age, and that was why I lost
myself so completely in the
caregiving, because I was used to
that and used to making my needs
small.
And that I could make my needs and
my wants big again and be who I
wanted to be all along, instead of
being symptomatic, like, having a
symptomatic experience of caring
for others and giving up on myself
in order to give everything to
other people.
I'm a firm believer that whether
it's approaching midlife where
caregiving can become a looming
reality, or even if you're
entering the caring professions,
taking an inventory of your
ability to care for yourself,
recognize your needs,
maybe let go of some of the
trauma, but also test your ability
to extend your joy span, as
opposed to just your time span and
your health span, might be as
important an exercise across the
board for all people.
You know, there's a caregiver
listening out there right now, and
who's wondering, like, what does
it actually look like to begin
choosing your own life after years
of disappearing into the care of
someone else?
I mean, it felt like jumping off a
sun-warmed rock into, like, a
really great river, and that's
literally what it was, but, like,
that feeling of, like, ah, relief,
you know, the rush of, like, the
bubbles around you and just being
in the moment of enjoying
yourself.
Like, I'm also somebody who has a
hard time getting out of my own
head and, like, being in the
moment, and you can't really not
be in the moment if you're
underwater.
So, like, that, I mean, in a good
way, not underwater in the, like,
you're being swept and carried
away, you know, the deliberate
part of that.
But that feeling of embracing
something that was joyful does
feel, does have that, like,
refreshing feel of, like, you
know, the first time you jump into
a pool on a hot day after a long
winter or something like that, or
a stream or something like that.
And, you know, for me, it was all,
like, going back to places and
things and, you know, experiences
I'd loved long before, before this
experience and before some of the,
like, you know, stresses of
adulthood and caring.
And as I said before, it wasn't
all just caregiving, but it, a lot
of, that was tied up in a lot of
it.
So, you know, in, in a lot of
ways, I'm grateful in a, you know,
in a larger sense for even the
challenge of that caregiving
experience, because even that, as
painful as that was, it did lead
me back to myself in a way that
I'm not sure I would have, like,
gone beneath the surface to do
that kind of, like, assessment and
inventory that you're talking
about.
Thinking about of, like, you know,
how do you live your life in a
more joyful way?
How do you live your life in a
more authentic, connected, real
way?
I'm not sure I would have done
that without these experiences.
And not that I recommend it.
It would have been better to do it
without the huge amount of pain
and suffering that, you know, I
went through, but also that Brad
went through and our family went
through and that I'm sure the
caregivers listening to your
podcast are going through, you
know, in, in real deep ways.
But that, you know, there, there
are ways to start carving that
out, even in small ways, while
you're in the middle of the
hardest part.
And I, I was not great at doing
that when I was in the hardest
part.
It took me longer.
And I think it's, it's very
challenging, but it is possible.
So many of our listeners and
caregivers out there recognize,
but are trying to know how things
feel and trying to get a deeper
sense of how they self-position
in, in what they're going through.
And I'd like to thank you for your
openness in helping people
understand, not just the doing and
the happening, but the feeling
that comes with it.
And you always hear of individuals
and different schools of thought
talking about being present in the
moment.
But now I will always remember the
idea of jumping into a bubbling
stream or body of water and, you
know, you're kind of, your cheeks
are puffed out and your hair is
floating around.
And it's like, you are truly
present with you in that moment.
There is nothing else around.
And if ever you wanted to feel
self-presence, I think you nailed
it.
Thank you.
Thank you.
I look forward to reading your
book this summer.
It'll, uh, they certainly enjoyed
reading your first book and I wish
you the best.
Thank you for visiting with us
today and thank you for sharing
your honesty and what it feels
like.
That wraps up this week's episode
of the Caregivers Podcast.
Thanks for joining.
Thanks for being here and we'll
see you next week.
If this conversation hits
something true to you, I hope it
reminded you that you're not
carrying this alone.
Kate, thank you for speaking to a
part of caregiving that so many
people live through but rarely put
into words.
And if this episode meant
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realize.
You're not alone.
We're all connected and you always
have a place here.
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 not
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If you're facing a medical
concern, health challenge, a
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I encourage you to reach out to a
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don't wait.
Call your local emergency number
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away.
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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.
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.