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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 Ropaleski,
and you can call me Dr.
Mark.
Most caregiving conversations
begin with the person who's
suffering.
Today, we're beginning with the
person who loves them, the spouse
who sleeps with one
eye open, the parent who checks
the bedroom in the morning, the
adult child who watches every
change in mood, the friend who
reads every unanswered text
message as a warning sign.
This conversation is about loving
someone who does not want to live
and what that does to the
caregiver.
Our guest today is Dr.
Stacey Friedenthal.
Stacey is a therapist, associate
professor, author, and one of the
leading voices helping families
understand what it means to love
someone through thoughts of not
wanting to live.
Today, we are asking what this
kind of caregiving
costs, what a caregiver can carry,
what they cannot, and how they can
begin to protect their own life
again.
Stacey, welcome to the Caregiver's
Podcast.
Before we begin, please take a
moment to subscribe
or follow the Caregiver's Podcast
wherever you're listening.
It's completely free, and it's one
of the
best ways to support the show and
help these conversations reach
more caregivers who really need
them.
Dr.
Stacey Friedenthal, welcome to the
Caregiver's Podcast.
We're so happy you're here with us
today.
Thank you.
Thank you for having me.
On the tradition of the podcast,
we are going to jump right in.
Now, caregivers already know what
it means to live with worry, but
what changes when worry becomes,
does the person I love still want
to be here?
Oh, that's a great question and a
very poignant question.
I think, you know, looking
specifically at your words, what
changes, I think what can change
is that
the caregiver's fears might become
center stage, and very often
caregivers, the needs of the
person
they're caring for are center
stage.
But then it can become such a
priority, such an urgent need to
know that the person you're caring
for is safe, that those needs can
take priority over what the person
who is being cared for needs.
And in fact, sometimes those needs
can clash, because if somebody
does have
suicidal thoughts, they may be
feeling they need for their pain
to end, or for their struggle to
end,
or they need peace, you know,
different things that they may
associate death with.
Whereas the caregiver
wants very much for them to stay
well and alive.
In most contexts, there are some
contexts where that's
not actually true.
But in most contexts, the
caregiver wants that.
But once
someone you love has said, I don't
want to live anymore, does a
caregiver's sense
of safety ever really go back to
normal?
Or does part of the
caregiver stay on alert from that
moment onwards?
That's a really good
question, and it's going to depend
on the caregiver and the person
being cared for
in the context.
But it can introduce a fear that
can haunt the caregiver,
especially because we know
that many people don't share if
they still have thoughts of
wanting to die.
And a lot of that can
depend on the caregiver's
reaction.
Like if somebody says, I don't
want to be here anymore,
and the caregiver says, oh, yes,
you do.
Don't even say that.
Don't even talk like that.
You know, you still have so much
to live for.
Well, then that person might kind
of go underground
with their suicidal thoughts
because they might feel like, oh,
it upset this, you know, it upset
the person.
It upset somebody I love and care
for and don't want to worry.
And they don't get it.
They don't understand.
They don't want to hear it.
And so therefore, the person may
not be inclined to
share again.
And then the caregiver is going to
also be thinking, well, did that
just go away on its own
that fast?
For that reason, I encourage
caregivers to try to create the
space to really hear what the
person has to say without shutting
them down, so to speak.
And I imagine that's not a skill
that develops instantly, but takes
some practice.
It is.
It's a skill that I call brave
listening because it's scary.
And I define brave listening as
asking the questions whose answers
you fear.
But still, oh, I forgot the exact
phrase I had in my mind.
But still, being present to hear
what the person has to say without
immediately jumping in to
talk them out of it, you know,
help them to feel better, to solve
their problems,
to tell them it's wrong to feel
that way, but to really, really
say something that invites the
person to tell them more about
what they're feeling.
In those circumstances, though,
does a caregiver often just start
living as though ordinary life
can't be trusted anymore?
I wouldn't say that's true for
everybody because, for one thing,
it depends on the line of
communication.
If the person who they're caring
for is being open and the
caregiver's willing to hear what
they
have to say, then they may feel
like they're, they know what is
going on, you know, that they're
not going to be blindsided,
they're not going to be surprised
because the person is being honest
with them about what they feel.
I think where that really becomes,
not dangerous, but a real
possibility, this lack of trust
and safety, is if somebody
attempts suicide.
And then it can be hard
for their loved ones to trust that
they're not going to attempt
again.
So, what happens to a caregiver
then who spends months or even
years then sleeping with one eye
or one ear
open, you know, listening for
signs that a person they love, you
know, made it through the night?
You mean, if the person that they
love is in an intense suicidal
crisis?
Or, but then there's also the
chronic, the chronic ideation,
which is always looming, but not
necessarily in crisis.
And I think caregivers probably
face more of the chronic state on
an ongoing
basis, whether or not an attempt
may have occurred in the past or
it's just been spoken about.
But there's
that chronic dealing with this
form of caregiving, which is
really not addressed very well.
And I'm
not sure caregivers may even have
a language for it, but we can
appreciate, I think, that
they go through changes when
they're living in this state of
hypervigilance.
Can you comment on that a
little bit?
Definitely, definitely.
Well, for one thing, it can be
very exhausting and painful to
live
in a constant state of
hypervigilance when you're fearing
the safety of somebody you love.
And for that
reason, I really urge people to
also, you know, also prioritize
their own care, their own
self-care,
and talk with others if they need
to, to get professional help or to
join a support group, whether
online or in
person, and to do what they can to
try to, you know, the whole oxygen
mask analogy, that if you're on
the
airplane and the oxygen mask comes
down, you need to be conscious to
take care of the person.
But I think something else that
happens is that, I want to be
careful how I say this, but I
think at some point, people often
experience
a reconciliation with their
limitations.
And what I mean by that is that we
may want to do everything
we can to ensure somebody's safe,
but we have limitations.
And on the one hand, that can be a
source of grief.
Like, oh my gosh, I can't control
what happens to my loved one.
I can't read their
mind.
I can't be with them 24/7.
I mean, all of us have to use the
restroom and the sleep, you know.
So on the one hand, that's a
source of grief.
But on the other hand, for many
people, it can be sort
of liberating, like that they
recognize their limitations and
they realize they don't have to be
perfect.
And that makes me think of this
John Steinbeck quote, "Now that
you don't have to be perfect,
you can be good." And, you know,
that when people stop trying to be
super human, they can be human.
And so the way I phrase this on my
website, because I have a post on
this on my website,
speakingofsuicide.com, is do
everything you can, but no, you
can't do everything.
And what I like about that phrase
is the "no, you can't do
everything." It could be N-O, no.
Or it could
be K-N-O-W.
My intent is K-N-O-W, but it works
both ways.
It sure does.
What happens to a caregiver's
nervous system when every silence,
every mood change,
every closed door starts to feel
like it could be a warning sign
they missed?
Oh, that's a, that's a very heavy
question.
Um, like I feel sad just being
asked the question.
It's, it's harder, you know, it's,
it is hard.
And that's where I think, um, for
many people, it's,
um, sort of a saving grace to
remind themselves that they can't
know what every silence means.
They can't know what every mood
swing needs.
And again, I mean, it's, it's
double-sided.
That's a
source of pain that we can't know
that.
But on the other hand, we're not
expected to know that.
And we
can just be present with the
person, you know, and we can
invite them to tell us what
they're thinking
and feeling.
We can, it's easier said than
done, but we can work on accepting
that we may not know,
you know, that even if they do
tell us, we may question, are they
telling me the whole story?
Or,
you know, are they withholding?
I guess that's the same thing.
Um, are they being truthful?
You know,
that kind of thing.
And it's hard.
And the, you know, there can be a
form of, I mean, not a form of,
but like it can be PTSD where,
when somebody's traumatized,
they're constantly hypervigilant
and
in a state of hyperarousal, um,
having intrusive thoughts and
memories of times that have been
traumatic, um, re-experiencing the
trauma.
So, that's again now where I also
start thinking of
professional help if somebody is
in that, um, much of a state of
hyperarousal.
That's probably sort of a very
extreme example, but there's
probably a spectrum of effects
that can
occur.
But what happens to caregiving,
for example, when one terrible or
difficult night turns into months
or years of just watching for the
next crisis?
Sort of the same things I've been
saying, but the other thing, you
know, I mean, in terms of fear and
will they make the acceptance,
will they accept their limitations
or will they constantly try to
be perfect?
But the other thing that can
happen is it can strain the
relationship.
You know, there can be, um,
stress, mistrust, anger, and the,
and there can also be feelings of,
and
I don't like to use this word
because it's overused in this
context and, and most of the time
I think
it's not the case, but they could
feel manipulated.
And, and not only that, but they
might feel like
if they make one wrong move, then
they're the person they care about
will try to end their life
and then it'll be all the
caregiver's fault.
You know, so they may make
allowances or make changes that
really aren't true to themselves.
You know, like, like say, um,
somebody says, if you go out
tonight
and leave me alone, I'm going to
be in so much despair that I don't
think life is going to be worth
living anymore.
And the caregiver may say, okay,
well then I'll cancel.
And they may feel manipulated.
Now, the person who said that may
not be being manipulative.
That may be their reality.
That may
be really how they feel.
There's a, an excellent quote,
just because you feel manipulated
doesn't
mean the person's manipulating
you, but the caregiver might still
feel manipulated.
And so that's where it's
just so important to try to
maintain, um, awareness of what
one's own needs are, meeting those
needs and
accepting one's limitations while
doing what you can.
I think so many caregivers
struggle with not being able to
identify their,
what their needs are, perhaps from
a lifetime of caregiving that
started
when family structural dynamics
were established in a family, be
it in that situation or just with
repetitive caregiving for
different care recipients over
their lifetime.
But I could see in this
situation that choosing strategies
for self-care is at the next level
of challenging, trying to offset
your needs and the person you're
caring for who's struggling with
the will to stay alive.
Yeah.
I mean, I think, I'm not sure what
you mean by offset your needs,
because that sounds like maybe
putting off your needs.
Well, I think my impression is
that some caregivers struggle to
put themselves
in the arena of, of self-care to
begin with, let alone choose it.
Um, and I could see this
circumstance
being especially challenging.
Definitely.
And also, I mean, I'm aware that
so much of what
we say in this field is easier
said than done, you know, like
meet your needs.
Well, how do I meet my needs
when I'm taking care of somebody
24/7, if that's the situation, you
know, or when, if I leave their
bedside that I'm fearful for their
safety?
How do I meet my needs?
You know, and especially if, if
somebody
doesn't have the resources to, you
know, hire outside care or doesn't
have family support to give them
breaks, it can be really hard.
And that's where, like, even just
calling 988, which is in, in North
America, the, um, suicide and
prevent, suicide and crisis
prevention lifeline, um, just to
talk and,
and maybe problem solve around how
do I get more of my needs met,
even when I can't fully meet them.
It's incredible when love becomes
surveillance, responsibility, and
almost to the point of
self-erasure.
What, what does living under that
level of threat do to the person,
the caregiver?
I feel like I keep saying it's
really hard and I want to be
careful not to be so repetitive,
but it
is, it's really hard.
And it's tremendous stress.
I mean, there's, you know, there's
constant worry and
fear.
And, and, you know, our minds are
very creative and we can tell
ourselves,
you know, right now the person I
care about could be thinking X, Y,
and Z, and they may actually be
thinking A, B, and C, but it feels
like they're thinking X, Y, and Z,
and it feels real.
And then
it has the same effect on us if it
feels that way.
So one of the things I encourage
people to do is to try
to really, as much as possible,
you know, keep the line of
communication open, listen bravely
so that
the person they care about feels
safe, responding honestly, and
maybe even developing a kind of
shorthand so that they can check
in and say, like, are you feeling
safe today?
That could be a kind of
shorthand or, you know, on a scale
of one to five, how much danger do
you feel you're in today?
And then
maybe that could help the
caregiver, you know, if the person
with five being the most
dangerous.
And if the person says, well, I'm,
you know, I'm always at a one or
two and today I'm,
well, one, zero to five, let me
say.
Um, I'm always at a one or two and
today I'm, I'm in between.
And then the caregiver ideally
would be able to dial down their
stress response and know that
right
now we're in an, we're in an okay
place.
Um, and one of the things that I
do as a therapist that I
think caregivers can do with
people they care about is, or care
for, is to say if you felt
differently in
in the future, what would make it
hard to tell me, you know, while
it's hypothetical, like if in the
future it was a four or a five,
would it be easy to tell me?
And if not, what would make it
hard just to
try to, um, problem solve in
advance.
And very often people with
suicidal thoughts have tremendous
fear
fear about, you'll have me
hospitalized against my will, or
you'll reject me, or you'll get
mad,
you know?
And so you can, or, or very often
people feel like I'm burdening you
and you would be better
off without me, which is a really
tragic, painful, um, belief to
have.
And then there can be a discussion
about, um, about that.
And one of the things that, that
I've written about is, yeah,
ideally you'd like
to be able to say you're not a
burden at all, but the reality is,
is in some ways people are a
burden
in terms of the constant care or
the appointments or the worries.
And it would be unrealistic to
say,
there's nothing about your
condition that imposes a burden on
me because the person being cared
for
knows that, you know, they, they
can see.
So then you could have a
discussion about, well, yeah,
I mean, there might be some things
that are harder now that I'm
having to take care of you,
but nothing would be as hard as
losing you.
You know, nothing would be as hard
as you, um,
taking your life, especially if it
was because you felt you were a
burden on me when I would much
rather prefer this kind of quote,
quote, burden than the larger, um,
pain and loss of losing you.
Now, Mark, I also want to be
careful because while I'm talking,
I'm, I'm having this little
niggling voice in my mind saying
there are situations where a
person has terminal illness
and in quite a few states in this,
in this country, in the United
States, um,
it's legal to seek a doctor's
assistance to end one's life.
So I just want to clarify,
are we talking about those
situations too, or are we talking
about situations where the person
doesn't
have a terminal illness and wants
to die?
Well, I'm thinking, uh, more of
the latter, um,
as opposed to medically assistant,
medical, uh, assistance in dying,
which is a very different
topic in itself and has a lot
more, um, elements to it.
So I was thinking more in just the
lack of,
of will to live and for whatever
circumstance, I really liked the
idea of having that sort of
check-in script as you sort of
referred to.
Um, I guess a caregiver also needs
to rehearse a little bit
how they're going to react to a
one, a two, a three, or a five on
that scale, because
just approaching it cold might not
be in anyone's best interest.
It needs to be something
contemplated.
Exactly.
And it's also something that could
be worked out in advance with the
person
that they're taking care of.
Like what would be most helpful to
you?
You know, what do you want me to
do
in that situation?
What do you not want me to do?
Now it's tricky because if someone
has depression or
despair or something else that's
distorting their thinking, what
they want may not be what their
healthy self would want, you know,
because if they may say, well, I
want you to step aside and let me
in my life.
And, um, since we are not talking
about the context of medical aid
and dying, I'm going to
set that aside and just, you know,
be, be intentional about that.
And then in that case, the
caregiver may
say, well, I can't, you know, I
can't just step aside and let you
end your life without trying to
do anything to stop you.
Um, so then what would be helpful?
And, and the other thing is, is
there are
different, you know, like the, the
safety scale could be zero to
five, it could be zero to 10,
whatever
is, you know, better for people.
Um, but it's not only what, and
talking about in advance, what the
caregiver would do, but also the
person being cared for, what does
it look like when they're in a two
or
three or four or five, you know,
what, what should the caregiver be
on the lookout for?
It's remarkable
how much, um, somebody in pain
thinks others can or should know
what they're feeling and don't.
Um, I talked to somebody, uh, uh,
somebody I know personally, not
professionally who had a colleague
who died by suicide and before
they died, they had made an
attempt.
And when their colleague
attempted suicide and was in the
hospital, the person I know went
and talked with them and said,
we were just together that day,
you know, what, what stopped you
from telling me or what, you know,
was, was it something I said?
Was it something I did?
You know, just wanted to not in a
blaming way,
like, why didn't you tell me, but
in a future way, what could I do
differently?
And the person said,
well, I was wearing the, I don't
remember what it was, but it was
one of the saints, you know,
I was wearing the charm with, with
saint, whichever.
And I thought you would know that
that meant I needed
help.
And the person was like, I had no
idea.
I didn't even notice the trauma,
you know?
So
that's where it could help, um,
just to have this line of
communication open where both the
caregiver
and the person being cared for
can, can say what they need and
want and do at different levels of
risk.
Is it fair to say that at those
higher levels of a four or five on
that scale, that the person
suffering may not even see the
caregiver because they're so
focused on their pain and where
they are
at those times of difficulty that
it's almost as though there's
tunnel vision on the situation and
they, they just cannot see what is
happening around them with respect
to their caregiver and their
presence and their thoughts,
because it is the pain of the
moment that is just so dominant.
Absolutely.
And in, in the literature on
suicide prevention, there's a
phrase for that and
it's cognitive constriction.
And the idea is that, um, you
know, sort of like a horse that
wears
something beside its eyes so it
can't see anything else that the
person's, um, awareness becomes
increasingly constricted.
And then there's another aspect of
that, which is that everything
they are
able to see somehow becomes
evidence of why they should die by
suicide, you know?
And, and contradictory
things can both be evidence of why
they should die by suicide.
So they may be in the throes of
cognitive constriction and, and,
uh, a really very sad, but also
illuminating example is something
that
was just published on my website,
um, a couple of days ago.
And I don't mean to, I'm not
trying to
advertise my website.
I don't get any money from it.
So, you know, there's, there's,
there's, there's no advertising on
it, but I am referring to it
because it, it gives me a lot of,
um, information and awareness
about what's going on.
And somebody
wrote a guest post on my site
about her husband tragically
ending her life, ending his life
while,
um, she was, while she was in the
house with four young children who
were their grandchildren.
And I, I think they were nine and
under or 12 and under, I can't
remember, but the youngest was
four years old and the, her
husband killed himself with them
in the house.
And, and it was extremely
traumatic, you know, because I
can't remember if she said the
method in, in the post or not,
but she heard his body fall and
she called out to the kids, what
did you do?
Because she thought
they had dropped something and it
was a two story house and he was
upstairs.
And so then she thought,
oh my God, he must've passed out
from like low blood sugar or
something.
And she ran upstairs and
she found him and the children
were behind her.
And she had to like, just kind of
whip around and
say, leave, leave the room, leave
the room.
And, and I mean, just, it gives me
goosebumps to think of how
terrible that must've been for
her.
One, to see her husband in that
state, but two, to be worrying
about
these little children.
And somebody left a comment, um,
after the post and said, I'm kind
of angry that
he did that.
Like thinking about it, it makes
me angry that he would do that
with four kids in the
house, knowing that they'd be
exposed to that trauma.
And that's where she replied in
the comment
section and said, like, when
somebody is in that kind of pain,
they're not thinking of other
people.
It's not that they're selfish.
It's not that they're thinking of
them and thinking, oh, I don't
care what
they go through.
It's that they're not thinking of
other people.
And, and what I compare it to
personally is, I don't know if
you've ever had this happen to
you, but I once had an abscessed
tooth
and it was all I could think
about, you know, like here's just
this tiny, tiny part in my body
right
here.
And it was all I could think about
because the pain was so
unrelenting.
And, um, and then of course,
my face swelled and I had to have
emergency surgery and, you know,
but when someone's
in intense pain, that pain demands
their attention and it can distort
their thinking.
There is something different about
this kind of caregiving.
I mean, if someone dies from an
illness, the caregiver may still
feel grief and maybe some guilt,
but when someone ends their own
life, the caregiver may really
sort of feel like it happened, it
happened on their watch.
What does that fear do to a person
trying to take care of the care
recipient?
Yeah, that's exactly right.
Um, I think that part of what they
can do is not differentiate dying
from a
natural cause from dying by
suicide so much because the
reality is, is when somebody dies
by suicide,
there's other things going on in
their body and their mind that are
out of our control.
And I mean, I'll give you an
example because
what you're saying also applies to
mental health professionals and
experience a client die by suicide
or a patient die by suicide can be
devastating for a mental health
professional.
And there was an article written
by a psychiatrist who had a
patient die by suicide very soon
after he
finished his residency and was
practicing on his own.
And it devastated him that his
patient died by
suicide and he felt responsible.
Like, like you said, you use the
phrase on my watch, you know,
it happened on his watch and he
should have been able to do
something to prevent it.
The person was
coming to him for help and he
wasn't ultimately able to help
him.
And he spoke with another
psychiatrist
who was more experienced and wise,
who said when an oncologist has a
patient die by cancer, they don't
blame themselves because it's
understood that sometimes the
cancer is bigger than anything a
human can do.
And that you can't save everybody.
And we may not like to think of it
this way.
But the reality is,
is that right now with our
existing state of knowledge and
practices, we don't know
everything about suicide.
Sometimes suicidal forces are
bigger than us.
And it's similar to the oncologist
who loses a patient
to cancer.
So why do we look at it
differently?
And that's where we can see where
self-blame arises.
That may not be fair.
Well, I think in the setting of
mental health, we bring of
ourselves to the encounter and to
the interaction, whereas we don't
really bring of ourselves to the
cancer cell.
We rely on outside forces like
chemotherapy, which may stop
working and giving it the
advantage to to grow and spread.
But we bring something of
ourselves to the care encounter,
I guess, when it comes to mental
health.
And in that scenario where I could
see
where we're a little bit more
vulnerable to taking on that
burden.
I love that you challenged that
analogy because nobody's
challenged it with me before.
You know, they're like, oh, yeah,
that's right.
You know, I think I think it is
right.
But I can
see where the vulnerability is,
why we might be inclined to think
that in this circumstance,
there's something about it that
because of the person we bring to
the encounter that is ourselves,
that maybe we can make a
difference.
Whereas we can't really control a
cancer cell.
Exactly.
And that's where I think our own
thinking goes awry in viewing it
completely differently.
Because there are things that we
can't control and that love can't
cure and that, you know,
that we are limited in.
And that reminds me of a different
post on my website that I wrote
years ago
about when somebody dies in a
tornado, we blame the tornado, you
know.
But we could say, why didn't
the person hold on stronger?
Why didn't they hold on longer?
Why didn't they think of me and
not let
themselves get carried away?
And I guess, you know, that's
where I come from is that suicidal
forces
are like a storm, you know, that
we can do our best to help
somebody get into shelter or to
stay dry or to
stay safe.
But ultimately, we're not
omnipotent.
And again, I'll return to, and
that's a source of grief,
but also a chance to be more
compassionate towards ourselves,
you know, to not demand
omnipotence of
ourselves because we're not
omnipotent and we do the best we
can.
And if somebody does die by
suicide,
you know, we've done what we can,
but that doesn't mean we failed.
You know, it means that the forces
of suicide were bigger than
anything that we currently have
the knowledge to address.
And I say we currently
have the knowledge because even
the most experienced mental health
professionals cannot identify who
will die by suicide or who will
attempt suicide from talking with
them.
And we don't have an x-ray or a
blood test or an MRI that can
identify suicidal intent.
And so there's just many things
that we
don't have power over.
And I have to be careful when I
say that because I don't want to
encourage
nihilism either.
I mean, I don't, there's a myth
and it's a very common myth that
if somebody wants to
die by suicide, there's nothing
you can do to stop them.
That's not true either.
There's a lot of things
we can try to do.
I mean, there's a whole lot, but
there's not a hundred percent
chance of success.
Caregivers go through so many
emotions in these scenarios, and
I'm sure they're not strangers to
feelings of some guilt and shame
possibly, which would be horrible.
But there's probably one emotion
that almost no caregiver really
wants to admit to, and that's
anger at the situation.
Not fear, but just
anger about it and that at the
unfairness of it all.
Sometimes maybe even some anger
directed towards the
person they love because their
coping skills are so eroded in the
face of the caregiving demands.
But when
someone already doesn't want to
live, the caregiver may be just
terrified that that anger will
somehow
confirm the person's despair.
Like, is anger safe in the
caregiver, care recipient dynamic
when someone
doesn't have the will to live?
I mean, anger is anger if you feel
it.
You know, inherently it's safe in
terms of it's a normal human
emotion.
But I think what can get
complicated is when people get
angry at the
person instead of the situation or
they get angry at the person
instead of the condition.
And that's again,
you know, you'll, you see just in
this brief conversation we've had
so far that I often compare to
physical, hard, like objective
conditions like a tornado or
cancer.
You know, that if we
don't recognize that suicidal
forces have something in common
with those, then we can fall under
the
trap of thinking it's the person's
fault.
You know, we can fall under the
trap of thinking,
why don't they try?
Why don't they feel better?
Why don't they appreciate what
they have?
You know,
and we could look at them and say
they have this, this, this, and
that.
Why don't we appreciate that?
And what's stopping them from
being able to look at what they
have and feel gratitude and
therefore want to live isn't in
their control.
You know, it's not a choice that
they made to wake up
one day and not appreciate what
they have and to want to die.
It's something that happened to
them.
And so we can, you know, I really
urge people to try to, to even if
they do feel angry at the person,
just to try to entertain the
possibility that what they're
really mad at is the situation.
And then something else that works
against that though, is that we
all want to be in control,
you know, and recognizing we're
angry at the situation is a
reminder of, of a loss of control.
And so that's also why I think a
lot of people blame themselves
when something bad happens is that
then they feel if it was their
fault, they were in control.
If they could have prevented it,
then that means they could prevent
it in the future.
And it's horrifying to really,
really recognize
I can't guarantee safety in the
future.
I'm getting kind of philosophical
here.
Well, it certainly sounds like
there is a place for anger, but I
think your redirect towards the
situation and moving that away
from the person is probably a
healthy recommendation on how to
deal
with that natural emotion that
we're not immune from having crop
up when the circumstances are dire
and
challenging and relentless.
It also enables the caregiver and
the person being cared for to stay
on the same side,
because the person who's being
cared for is also angry.
You know, they're angry at the
circumstances that put them in
this place.
They're angry about the pain
they're feeling.
They're angry about the
limitations they have.
And they're angry about the
unfairness of it.
And I mean, obviously, I can't say
everybody's angry about those
things.
But generally speaking,
it's not uncommon for somebody
who's having suicidal thoughts to
also have anger about what they're
experiencing.
And so if the caregiver can try to
maintain their focus on anger at
the situation,
they can be angry together.
You know, instead of being at odds
and angry at each other,
they can be angry together at what
has happened and then be unified
in that way.
A caregiver might find themselves
terrified to set any sort of limit
because they believe one boundary,
like be it one night away or one
moment of honest frustration just
could lead to the worst outcome.
How do you help a caregiver living
inside that fear?
Yeah, it's so uncomfortable.
And I think that's one of the
biggest challenges
to either being a caregiver for or
being in any relationship with
somebody who has thoughts of
suicide and especially chronic
thoughts of suicide is wanting to
do everything to keep that person
alive and hopefully also feeling
better or happy or having reasons
to live, but ultimately to keep
the person alive.
And sometimes that can mean
sacrificing, you know, okay, I
won't go
to the bridge group that I've gone
to every week for the last 35
years, you know, I won't do that
tonight
because you're so upset.
And then, um, and then a dynamic
can happen where that gets
reinforced then.
And the person who is being cared
for may bring up other things.
And, you know, we're talking about
a
caregiver, um, relationship and
I'm thinking of an adult taking
care of an adult, but it also
happens
with parent and child.
And, um, an example I give in my
book for, for friends and family
is, uh, you know,
that parents could say, okay, I'll
get you a puppy, you know, and if
that'll make you want to live,
you get a puppy, that's what you
get.
And then a few months later it's,
I want a car and the parents
say, okay, I'll give you a car
because I don't want anything bad
to happen to you.
I don't want you to
die.
So I'll give you a car.
But now a dynamic has been created
where the caregiver, whether a
parent
or an adult, um, in another
context, um, may feel controlled.
And that's what I was referring to
earlier
when I talked about feeling
manipulated, that they may feel
that they don't have the ability
to make
decisions for themselves anymore
because they're living under the
specter of such intense fear of
something happening to the person
they care about.
I mean, is it ever true that a
caregiver's boundary
is the thing that causes the
outcome they fear?
No, because, and I'm saying that
very quickly and very,
um, adamantly because there's
never one thing that causes
suicide.
The, the, the danger is that the
caregiver could then identify that
one thing and blame themselves
without, um, acknowledging or
honor,
acknowledging or honoring the
complexity of different things
that combined that, um, can lead
to a suicide.
And I'll give you, uh, an example
of this that's fairly absurd, but
I think it's illustrative because
it's absurd.
And that's that, um, there's an
essay, I can't remember who wrote
it, but he talks in, in the
essay about, he was a visiting
poet in New York City at a, at an
elementary school where a teacher
had died
by suicide and nobody was talking
to the students about it.
And he thought that was wrong.
He thought,
you know, somebody's gotta give
them the space to say what they're
thinking and feeling.
And he was a visiting
poet.
So when he, um, came into their
class, he asked them, you know, I
understand your teacher died.
And do you know what happened?
And most of them knew he had
killed himself because they'd
overheard
adults talking about it.
And then he asked them to write an
essay about the teacher.
And the essays,
these were like third or fourth
graders, maybe fifth.
And the essays were, they ran the
gamut to,
oh, you know, that Mr.
So-and-so was funny.
He would make jokes or Mr.
So-and-so was mean.
He would, um, you know, make me
stay inside for PE if I did
something wrong.
One person said,
Mr.
So-and-so was funny.
He wore these green pants.
But then there was one child who
said,
Mr.
So-and-so killed himself because
of me.
And he said, I was being bad that
day.
I was misbehaving and he got mad
at me.
And that's why he ended his life.
Now, any, anyone can look at
that and say, oh my God, that is
not why he ended his life.
But to the child, that was why he
ended his
life.
And, and I say it's absurd because
there's that, that child was
giving, not in an egotistical way,
but just giving themselves so much
power and, um, responsibility by
thinking it was their fault.
And so that's where I think it's
helpful in illustrating or
illuminating that there's always
a lot of different things
happening.
And it may look like there's one
thing,
you know, like, oh, I shouldn't
have gone out that night when he
or she asked me to stay home.
If I had, they, they wouldn't have
killed themselves.
We can't know that.
You know, we just cannot know
that.
And even if that were true, like
if it was a,
even if in some way it exacerbated
their suicidal intent, they were
already at 98 or 99 on a scale of
a
100.
And if it pushed them to 100, it's
the 98 and 99 that were more
substantial in,
in affecting the outcome.
You know, Stacy, so many
caregivers struggle with feeling
alone and feeling unseen.
And in these circumstances, I'm
sure that can, that feeling can
multiply exponentially.
But what
happens when the caregiver
actually starts to lose hope while
the person they're trying
to keep here is actually still
holding on?
Do you mean when the caregiver
themselves is having suicidal
thoughts?
Or just losing hope in their
ability to care give sustainably
and meaningfully and
in their own framework
effectively.
What if they're losing hope in the
strength they have
to continue to be there for the
person they love who's struggling
with the will to live?
Yeah.
Yeah.
Boy, these, these questions are so
poignant.
I mean, just even that, that
these situations are so common is
just so sad.
I'm just trying to think of, I
think what would be important
there is, I mean, it can happen in
different ways.
I mean, sometimes a caregiver
could become convinced by the
person they're caring for
that the person would be better
off dead.
In Austin, when someone has
suicidal thoughts,
they want to convince others of
that.
They want permission, so to speak.
And they want to convince
them that they're hopeless and
that they should die.
And that can be a very powerful
pull because
people can be very convincing.
So somebody could lose hope in
that way.
You know, they could start
thinking, oh, it would be better
if, if they died.
Better for them.
Maybe better for me too.
You know, maybe it would be, um,
there would be different things
about it that would be
okay.
And at that point, I think it's
important to challenge, um, is, is
this what they're trying to
convince you of?
You know, is this what your true
self thinks or is this what your
self-under duress thinks?
And to try to connect with
whatever it is that feeds them,
feeds their true self, whether
that's
spirituality, connection with
others, talking out their
problems, um, you know, different
things
that could connect them to what it
is that they really do believe,
feel, and want.
Where is the caregiver then
supposed to put all this fear,
anger,
exhaustion when they don't feel
safe bringing it into the
relationship and the rest of the
world
really doesn't understand what
they live through day to day?
Boy, that's a question for all
sorts of different contexts, isn't
it?
Not only this one.
Let me ask you, I mean, are there
online communities for caregiver
support?
Well, there are lots, there are
lots of them, but I think they are
within arm's reach.
They can start
locally and they can branch out
statewide, province-wide,
nationally.
Um, many of our guests, uh, over
the
course of, um, the series of
episodes we've done, uh, point to
the fact that we have better tools
than
ever to find community in
caregiving.
And, uh, I'm sure as you alluded
to, there are, there are
communities
for caregivers who are looking
after individuals who've lost the
will to live.
Um, but I think there's
there's also a lot of
misunderstanding or perhaps
disacknowledgement or maybe
discomfort in maybe
recognizing this form of
caregiving.
Uh, I look forward to hearing from
folks in the comments.
Um,
these are, these are the questions
that don't often get asked, but
they're the ones that might carry
the
most meaning for our listeners
moving forward.
Yeah.
And I see what you mean about like
maybe being feeling invalidated by
others because there's,
uh, I don't know if you've, you've
heard this before, but the
casserole effect that if somebody
stands up in church and says, my
husband had a heart attack, then
people bring them a lot of
casseroles.
If they stand up in church and
say, my husband was just diagnosed
with cancer and is in the
hospital,
they bring them a lot of
casseroles.
But very often, sadly, if somebody
stands up and says,
my husband is sick of suicide, or
my husband's at the mental
hospital, or my husband's addicted
to
drugs and is in rehab, the
casseroles don't come.
And there can be like a
differential response based,
in my opinion, on stigma and fear.
But it can be very alienating.
And the chronicity too, and the
unknown of what the clinical path
of that
acute moment is actually going to
have in store.
And we've had guests allude to
that as well.
Um, and, uh, that's sort of the
disappearing help that's initially
offered, but then people just
don't
know what to do when it's not a
finite time period, maybe
something that goes on for a long
period of
time.
And that's where people become
uncomfortable.
Yes.
I wanted to tell our listeners,
today's episode is not about
making the caregiver better at
carrying on
the impossible role, but it's
about helping the caregiver
understand what is theirs, what is
not
theirs, what support they might
need, and how to keep loving
without becoming the entire safety
system.
So, Stacey, after living as a
caregiver this way for so long,
what does a caregiver
need in order to stop feeling like
they are the only thing standing
between the person they love
and the worst outcome they dread?
Hmm.
I think the first thing they need
is to be realistic about
themselves, being realistic about
themselves and their lack of
omnipotence.
And, and, you know, I mentioned
earlier that for some people,
they view it as liberating when
they recognize like, okay, I can't
be perfect.
There is a lot I can't control.
And, and, and what I mean by
liberating is for some people, it
allows them to connect more to the
person
that they care about.
Because they're, the fear is, is a
wall that can come between them.
And, and fear can impede empathy.
And so if they're able to
recognize that this isn't all
about me, you know, during the
break,
we mentioned that the, the
statement that love can't cure
all, and, you know, the, the
caregiver can't cure
all.
But also I think caregivers often
feel like if they loved me, they
wouldn't want to die.
You know, you know, if they loved
me, I would be enough to stay for.
And that is also giving too much
power to, um, to love when there's
so much else we can't control, you
know, and, and I'm going to say
something, and this is kind of
controversial to say, because it's
very provocative.
And also, um,
people can, can view this
differently, but David Foster
Wallace has, uh, he's a, a
novelist who did
ultimately die by suicide.
And he has a passage in a book he
wrote that people who, um, are
seriously
considering suicide, it, for them,
it's like being in a burning
building and, and either being
killed by the,
very painfully by the flames or
jumping out of the building to, to
avoid that terrible fate.
And they're not thinking there are
people who love me.
There are people I love.
All they're thinking
is there are flames coming at me
and I can't be burnt to death.
And that I think is some people,
they don't like that analogy
because they say it, it, it
encourages hopelessness.
Well,
not necessarily because there are
fire exits, there are, you know,
ways to escape from burning
buildings
besides dying.
Um, but to me, it, it gives
perspective on, on the over, on
the way that humans can inflate,
not only our importance and power,
but also our control.
So, and then of course I come back
to, but that doesn't mean there's
nothing we can do.
I mean,
there are many things we can do to
try to help and support somebody,
um, to stay alive.
But, um,
but we can't, as I said before, we
can't do everything.
Caregivers often confuse Stacy,
you know, listening and listening
bravely with responsibility in the
moment.
And if, if they let themselves and
really let themselves hear how
much pain the person they
care for is in, they may feel like
they truly need to fix it.
How does a caregiver honor that
pain,
stay close and still not assume
the responsibility for whether
that person they love wants to
keep
going or not?
That's exactly why it requires
bravery because it's so scary to
really be present with
somebody when they're talking
about their pain.
I think it's next level bravery.
It is.
This is bravery with a capital B.
That's a good way to put it.
Um, I would say one
practical thing they could do is
they could ask the person, you
know, when you're telling me this,
are you wanting me to just listen,
not just listen, because listening
is a big thing, but are you
wanting
me to listen and be a sounding
board or are you wanting me to try
to help solve the problem?
And,
if, you know, are you wanting
advice, you know, that kind of
thing.
And, and if the person says,
no, I really just want you to
listen, then they've got that
license that they're not being
asked to fix it.
Um, and then if they're in, in
doubt about how to listen,
to think about what are things
they could respond with that would
invite more disclosure versus that
would
shut down disclosure.
Yeah.
Yeah.
And so, I mean, and this is going
to sound really basic, but tell me
more is something that invites
more disclosure.
Um, uh, reflecting back what the
person says,
you know, you're in a lot of pain
or God, you really want to die,
don't you?
That invites more
disclosure.
It's the, it's the things about,
look on the bright side, you still
have a lot to live for,
or how could you think of doing
that to me?
You know, those kinds of comments
don't invite
disclosure.
And so really trying to, um,
invite the person to say fully
what they feel.
And it can be
terrifying.
And not only because the person I
love is in so much pain, and I'm
sitting here bearing
witness to it without doing
anything to stop it, but also
because it puts us in touch with
our own
capacity for suffering.
You know, and, and sometimes
people will say to me, what if I
really listen and
then I get pulled into the
darkness with them?
And there's a psychologist named
Dave, David Jobes,
who's developed a form of
psychotherapy for people with
suicidal thoughts, more form of
assessment.
Um,
um, and he says, um, you want to
go into the dark room with the
person, but leave the door open.
That's enlightened.
Yeah.
Don't close the door behind you.
Yeah.
I, I really appreciate that notion
that you bring up about warmth and
love informed setting of
terms of terms of reference for
how that supportive conversation
is going to occur and really give
the voice to the care recipient.
And, um, I think strength in that
situation can arise and supportive
support, perhaps that the care
recipient may never have felt
before just through the honesty of
setting
those terms of reference and
listening and respond.
I mean, not just listening
bravely, but responding bravely.
True.
True.
True.
And going into that dark place.
What's the difference in, for our
listeners, just to understand in a
straightforward way, the
difference
between being present for someone
and becoming responsible for their
survival.
There's a, there's
that fine line.
How do we know we're approaching
it?
And how do we hold ourselves back
from stepping across it?
Being present for someone and then
the other possibility is being
responsible
for their survival.
Is that what you said?
Yeah.
Like there's, we're so present
that we
take on that responsibility, which
can be all encompassing and
swallow up the caregiver and
whatever energies they have.
It can swallow up the caregiver.
And again, as I mentioned before,
then it can make it harder to
connect with the person who's
being cared for, you know, because
of the fear that, um, stands
between
them and makes it hard for the
caregiver to really hear what the
person is saying, who, um, is
being cared for.
So, um, and your question was,
what can people do to challenge
that?
Or to challenge themselves as they
notice themselves walking quite
close to that line.
Yeah.
I mean, I think some of it could
be asking themselves, am I
thinking that I should
be able to control this outcome?
You know, am I being with this
person or am I being apart from
this person trying to save them?
And, and again, that's where
asking the person comes into of
what
they want, because somebody might
be listening to this right now
going, I don't want the person to
be
with me.
I want, I want my person to be,
um, you know, getting me help or I
want my person to be
helping me figure out the
problems, you know?
So really talking with them about
what, what is it
that you need right now?
What does a caregiver owe someone
who refuses professional help, but
still
relies on the caregiver to stay
close and be so present?
I mean, how do you tell the
difference
between being manipulated by the
person you're caring for and being
trapped by the seriousness of
the situation?
Mm-hmm.
And sometimes both could be true,
right?
So do we, it would seem to me that
when someone refuses professional
help,
it can be much more challenging to
care given that circumstance.
Has that been the experience
you've witnessed in your
conversations with caregivers and
in, uh, in your research?
Sometimes, I mean, there can be
resent, resentments, and it's not
only
a refusal to get professional
help.
There can be things that, from
your vantage point,
the person could do to help
themselves feel better that
they're not doing.
You know, one is getting
professional help.
Another is, um, you know,
depending on the condition
the person has, maybe they drink
too much and drinking, um, affects
depression.
You know,
maybe they, um, aren't looking at
the situation more holistically
and are only focusing on really
bad things and ignoring really
good things.
And so, those can create
resentments.
And that's where
I think it's important, as I said
before, to be mindful of what is
within that own person's control.
You know, what is a symptom of a
condition and what is willful?
And even willfulness sometimes
can be a result of the condition.
And I don't mean that that means
whatever they say or do is okay,
or that anger isn't allowed.
It's just that can help soothe, in
some ways, the feelings of
helplessness
and resentment that a caregiver
might develop in, in that context.
Is there a point where
self-preservation is actually not
abandonment?
Absolutely.
I mean...
It's a very controversial area and
it comes up in a lot of our
engagement with our listeners and
viewers.
It's a fine line, but what are
your thoughts about that?
Could you tell me more what the
controversy is?
Well, I think that's the notion of
finding space for your own
self-care rituals or your own
needs
can be difficult for some
individuals because it's viewed as
abandonment, either in their own
eyes or
they could be potentially in more
tricky circumstances, as you
alluded to, also manipulated into
a scenario where it comes across
as abandonment.
But some caregivers fundamentally
just cannot turn to
self and care of the self because
it equates with abandonment of the
loved one, abandonment
of their mission.
It's such a fine line, but if we
take this example, looking after
someone and
caregiving for someone whose will
to live is in jeopardy, if we're
taking time to look after
ourselves, is there a point where
it naturally could never be viewed
as abandonment of the other?
Well, I think, you know, at the
risk of sending cliche, because
I'm thinking of the air mask
thing,
or the oxygen mask thing.
But if we aren't taking care of
ourselves, then we can't be the
best
caregiver, you know?
And that's one of those things
that's easier said than done
because then you do get
into the fear of, well, what if I
go to the gym and while I'm gone,
they get into their medicines,
you know?
And so you can, you can safety
plan with the person.
And that's something we haven't
talked
about that I probably should have
brought up earlier is that safety
planning is something you can do
too
with somebody to, and there's
actually a website,
suicidesafetyplan.com that has a
template.
And it
talks about warning signs that a
suicidal crisis could be brewing.
And then talking with the person
who's experiencing suicidal
thoughts, what they could do if
they feel that danger coming on,
what they could
do for themselves, what they could
do to distract themselves.
And then it goes to different
layers,
like who they could turn to for
help and things like that.
But having a safety plan in one
part of
the safety plan is making the
environment safe.
And so, you know, there's
different levels of
caregiving.
And in some cases of caregiving, a
person isn't able to even leave
the house.
So if you remove
methods for ending one's life,
then that's going to create much
more safety.
But other people,
they may be able to go out of the
house and go to the drugstore and
buy something.
So, but making the
environment as safe as possible,
by all means, removing or at least
locking up firearms, if those are
in the
that are in the right place.
And then doing what one needs to
do for oneself, knowing that
I've communicated the best I can,
I've listened the best I can, I've
planned for safety the best I can,
and I need to take care of myself
too.
So if we're telling ourselves
those things, when a caregiver has
built so much of their life around
making sure the worst doesn't
happen, how do they actually begin
to recover a life of their own?
:
You mean, you're not talking about
if the worst did happen, you just
mean even, how do they change
that habit?
:
How do they change the trajectory
in their caregiving, even if the
worst hasn't happened?
:
It can be scary, because it's a
new way of being.
And there's fear and risk
in all aspects.
I just recently listened to a
podcast about
somebody who died by suicide while
they were in a psychiatric
hospital.
And it's especially galling,
they ordered a suicide kit online
and had it delivered to the
psychiatric hospital.
And so the
psychiatrist who did the podcast
was talking about why, you know,
why did they let the patient open
the package herself?
And this might sound not so
related, but the relationship to
what we're
talking about is he talked about
there's risk in everything.
And that even in an inpatient
psychiatric hospital where you
could watch somebody, two people
could be watching somebody 24/7,
you can't
do that all the time because they
need to be able to have
independence eventually.
And so we have to
accept some level of risk for a
greater good.
And the greater good may be caring
for ourselves so that we can
care for a loved one better.
The greater good may be, well
actually that's the biggest
greater good in this
case, but also giving agency to
the other person, not to end their
life by any means, but to have
some
independence and to have some
space to themselves.
So I think it would mean really
having a conversation with
yourself about short-term and
long-term.
Like in the short-term, this is
risky, it's painful, it's scary,
but in the long-term it could
create more benefits.
So if the caregiver is waiting for
the fear to disappear before they
start living again,
are they waiting for something
that may never fully come?
Oh yeah, I definitely think, and
this is true of brave listening
too, is that fear is just going to
be a companion.
And there's a book called Feel the
Fear and Do It Anyway, and I love
that phrase.
We
don't have to wait until we're not
afraid, because we can accept that
we're afraid, we can observe our
fear, and we can do it anyway.
I couldn't think of a better
parting message for a very
meaningful
conversation, one steeped in
honest reflection and you sharing
your experience very meaningfully
for our listeners.
So I'd like to thank you for being
here and embarking on a very
important
conversation that isn't one that
we're always comfortable having,
but one which still needs to be
had.
That wraps up this week's episode
of the Caregivers Podcast.
I'm your host, Dr.
Mark,
and we'll see you next time.
Stacey, thank you for helping us
have a conversation that many
caregivers are living, but very
few are able
to say out loud.
I think one of the clearest
reminders from this conversation
is that love matters
deeply.
But love is not control.
A caregiver can stay present,
listen bravely, seek help, build
support,
and respond with compassion.
That they cannot make themselves
the only thing standing between
another
person and the worst outcome.
For anyone listening who's living
with this kind of fear, I hope
this
conversation helps you feel less
alone.
I hope it gives you permission to
take your own exhaustion
seriously.
And I hope it reminds you that
caring for yourself is not a
betrayal of the person you love.
It may be part of how you stay
whole.
Before you go, please subscribe
and follow the Caregivers Podcast
wherever you're listening or
watching.
It's free, it helps support the
show, and it helps these
conversations reach more
caregivers and families who may be
carrying something they never had
thought
or had language for.
And if the Caregivers Podcast has
been helpful to you, please
consider buying the
team a coffee.
We're a new independent show, and
every bit of support helps us keep
bringing these
conversations to caregivers each
week.
The Buy Me a Coffee link is in the
show notes on YouTube,
Apple Podcasts, and Spotify.
Thanks for listening, and we'll
see you next time.
To wrap up, I wanted to remind you
of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional
medical advice, care, therapy, or
crisis services.
Listening to this podcast does not
create a doctor,
patient, or caregiver-client
relationship between us.
If you're facing a medical
concern,
health challenge, a mental health
challenge, or a caregiving
situation that needs guidance,
I encourage you to reach out to a
qualified professional who knows
your story.
If you're ever in crisis,
please don't wait.
Call your local emergency number
or recognize crisis hotline right
away.
You deserve real-time help and
support.
The views you hear on this show,
whether from me or my guests,
are our own.
They don't necessarily reflect any
organizations we work with, are
part of,
or have worked with, or been part
of in the past.
This podcast is an independent
production,
and it's not tied to any hospital,
university, or healthcare system.
Thank you for being here,
for listening, and most of all,
for taking the time to care for
yourself while you continue to
care
for others.
I look forward to hearing from
you.