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The cost & courage of caring - stories that spark resilience.
Grief doesn't always begin when
someone dies.
For a caregiver, it can begin
months or even years earlier,
while they're still doing
everything they can to care for
the person they love.
Then that person dies, and
everything changes again.
I'm Dr.
Mark Ropolesky, and this is The
Caregiver's Podcast.
Our guest today knows this
experience both personally and
professionally.
Les Harp was the primary caregiver
for two wives, both of whom he
lost to cancer.
Today, he's a hospice nurse and an
end-of-life educator known online
as That Hospice Guy.
Les is returning to talk about
caregiver grief, what happens
before and after the final loss,
and whether it's possible to build
a life filled with love and joy
again.
Please subscribe or follow the
show wherever you're watching or
listening.
It's free, and it helps us keep
these conversations going.
Les, welcome back.
Les, welcome back to The
Caregiver's Podcast.
It's great that you're here to
join us again today.
Thank you, sir.
Glad to be back.
Well, we're going to jump right
in, as we always do, and today
we're talking about grief.
Les, can you tell me, what is
caregiver grief, and how does
caring for someone change the way
you experience losing them?
Well, it's a deep question, right?
So, caregiver grief begins usually
when someone finds out that their
loved one has a terminal
diagnosis, a terminal prognosis,
and at the same time, they are
caregiving as that person
experiences whatever that disease
process looks like,
whatever that decline looks like,
and it can look like different
things based on different disease
processes, obviously.
But we talk a lot about
anticipatory grief, right?
And so, anticipatory grief is the
grief that begins before our loved
one actually dies.
We begin grieving and losing
things, and so we experience, when
we experience loss of any kind, we
experience some form of grief,
right?
And so, anticipatory grief is that
grief that we begin experiencing
as our loved one is declining and
losing function,
and we see them in the process of
dying and kind of slipping away.
So, we start grieving some of
those losses way ahead of time
before they're actually gone, and
that's really kind of what
caregiver grief looks like.
These little things that get lost,
when someone loses the ability to
ambulate, right, and to walk, for
example, and get out of bed,
the caregiver grieves that loss
along with the person who has lost
that function, right?
And then, on top of that, now the
caregiver is now responsible for
many other things.
When someone can't walk,
literally, it's if they are going
to get out of that bed,
someone is going to have to help
them get out of the bed and get
into a wheelchair or a chair or
whatever that looks like.
And so, the burden is increased on
the caregiver at the same time
that they are grieving these
losses.
So, it's extremely challenging for
a caregiver, for sure.
I can imagine, too, that if going
for walks with your partner or
your person were a big part of
your life,
witnessing that and realizing you
might never go for a walk again is
yet another layer of grief in that
process.
Yes, sir.
Yeah.
And it's so complicated because
there are so many layers that are
involved with loss, right?
There are so many things that
affect when we lose function.
There's so many layers and things
that that affects.
And so, the caregiver is grieving
those things at the same time that
that person is still literally
alive, right?
And many times, caregivers don't
even realize they're grieving,
right?
And so, that's, I think, why it's
so important for us to have these
conversations and talk about it.
Absolutely.
And certainly, and help them
understand how to position it and
how to make room for joy in that
process, too.
Yes.
I think there is room for it.
The last time you were on the
show, Les, you said that
caregiving changes people forever.
How does grief change the
caregiver?
Grief is another one of those
things that we carry with us,
right?
It never goes away.
I lost my wife, Cassie, in 2005,
so 21 years ago, and I still
grieve that loss, right?
Now, it looks different now than
it did 21 years ago, obviously,
but the grief is still there.
It changes who you are, right?
Especially when you have someone
that you lose, spouse in general,
or specifically in my case,
different losses can look and feel
different ways, right?
And our grief can be affected in
different ways by those losses,
but it is profound, right?
And when we lose specifically our
spouse or the person that's
closest to us, our life partner,
whatever that looks like, we lose
a person that we have built a life
with by choice, right?
It's not like a family member that
we're born into a family.
We choose to be with those
specific people and form our lives
together, and if anybody's
walked through that kind of
relationship successfully, you
build a life so closely together
that you
literally become part of one
another.
So when that person dies, and when
we start going through that grief,
it is a profound loss that you
will carry with you forever.
And the choices you make, the way
you see life literally changes
because you learn the importance
of life and those relationships.
And it's one of those things,
right?
There's a saying that says you
don't know what you got until it's
gone, right?
And so, in that vein, people don't
think.
We take things for granted, right?
That's just human nature.
And so, when we experience that
profound loss, that grief changes
who we are.
There are things that we talk
about with our partners, with the
people that we love, that are the
closest people to us,
that we don't share necessarily
with anybody else, and the rest of
the world doesn't even know about
those things.
So, when we lose that person, we
lose sometimes the only person
that even remembers that
conversation and can validate that
conversation or those thoughts for
us.
So, yes, grief touches every piece
of our lives, and I think people
don't really understand the
gravity of that until they're
walking through it.
You think it differs between
grieving for your person and
grieving your parent?
I do.
In fact, I've experienced both of
those losses.
My mother died about three years
ago, a massive stroke, and that is
a profound loss.
That was a profound loss for me as
well, and I still carry that
grief.
It is because of the relationships
being different, the dynamics of
the grief feel different, right?
That person, my mother, played a
completely different role than my
life partner, right?
My wife.
And so, the things that are
affected by that are different
than the things that are affected
by losing my spouse.
I don't like to compare
necessarily losses like that, but
there is a difference, right?
Again, we chose to be with our
partner.
We chose to be with our husband,
wife, spouse, life partner.
We were born into the rest of our
family for the most part, right?
So, those losses feel different,
and there's obviously different
dynamics from a child and a parent
than a husband or wife.
So, to kind of pinpoint what that
looks like, you just have to
imagine the relationship you have
with a parent, and all of those
things that go into that are going
to be affected by that grief,
right?
And so, there are times now, for
example, with my mother, I spoke
to my mother, texted my mother
every day, right?
But it was about things that were
just normal in life or family
things.
And so, anytime any of those
things come into my mind and I
feel like, oh, I need to talk to
my mom, that's when those grief
points really hit.
Obviously, globally, as far as
grief goes, for whatever kind of
loss, big triggers for that are
dates, right?
So, anniversaries, birthdays,
holidays, as we're coming in right
now to the fall, right?
We have a lot of holidays coming
up in the United States.
We have Thanksgiving.
We have, obviously, Christmas
coming up, New Year's.
All of those kind of big holiday
events that come towards the end
of the year usually have meaning
for us, right, with memories that
we've built with the people that
we love that we've lost.
And so, those are also kind of
those, I don't want to say
dangerous spots, but those are
kind of those trigger spots where
when we get to those dates, we're
highly likely to be experiencing a
little more in the way of feeling
that grief.
What is it like?
To feel and experience
bone-crushing grief on the inside
while still having to hold
everything together for the person
you care for during their
end-of-life journey.
It is quite a unique experience,
right?
And again, I was fortunate, not
that any of this is fortunate, but
I was fortunate that when I lost
my wife, Sonia, in 2018 to cancer,
I had been through that loss
before.
And so, as I was caregiving, and
again, I'm a hospice nurse, so
I've also done years and years of
caring for patients and their
caregivers as they are going
through this.
But experiencing it yourself is
completely unique, and it's
something that you just can't
exactly explain how it's going to
feel until you walk through it.
It is one of those things where
it's always going to depend on
what that relationship actually
looks like.
For me, my wife, Sonia, as I was
caregiving for her towards the end
of life, it was profound grief on
both of our sides, right?
Because she knew she was dying,
she knew there was nothing more
that could be done for her cancer.
And so, as she lost function, the
last thing that she lost was the
ability to reason, right?
So, she was very alert, cognizant
of everything that was going on
and the losses that she was
experiencing all the way up until
the last couple of weeks of her
life.
And so, it's a balancing act of
emotions, right?
It's grief that you're suffering
as the caregiver.
It's grief that you're suffering
for the person you love because
they are grieving.
And anytime any of us grieve and
we love someone that's grieving,
we are going to inherently, if
we're human beings, we're going to
inherently feel something about
that as well.
So, that's compounded.
The tasks of caregiving profoundly
ramp up as someone is declining at
the end of life.
So, you have to also parse your
brain into focusing on those tasks
and making sure that you're doing
a good job of taking care of that
person.
And so, it is extremely unique to
try to balance those things.
And you're not always successful
at doing it, right?
You don't want necessarily, I
didn't want my wife to know the
burden that I felt.
I didn't want her to be burdened
with anything that I was feeling
at the end of her life.
And so, you try to manage holding
those things in sometimes, which
can be detrimental as well, right?
We know that as we internalize
things, they just kind of get
worse.
But it is extremely challenging
for caregivers who are caregiving
for someone at the end of life to
deal with the fact that they are
also thinking about what's going
to happen in two weeks, a month,
three months, six months, when the
person I love the most is no
longer here, right?
And the ramifications of what that
looks like.
When you're caring for someone you
love, do you have an ability to
choose when to let the grief in?
Or can it just wash over you in
the middle of everything that you
still have to do?
Yeah, unfortunately, a lot of
times we don't get that choice.
We're in such a raw area of grief
when it's at those last days
because, again, like I said, most
people don't realize they're
grieving, right?
They don't put two and two
together.
Everything is just happening and
cascading so fast that they're
just trying to survive.
So, no, a caregiver, I can tell
you from experience, and this was
somebody who had, you know,
already had years and years as a
hospice nurse and had experienced
the loss of a life.
Even going through all of that,
yeah, there are times where you
just don't, you can't control the
emotion.
It's just going to come out.
The pressure, the grief itself,
right, the sadness, and your brain
trying to process what's going on
now, but at the same time, what is
about to happen and what your life
is about to look like.
Because these losses, in addition
to the caregiving that we're doing
for that person, the grief that's
associated with that loss is going
to change us forever, really.
It almost sounds paradoxical, but
it almost sounds like you enter a
new version of survival mode in
the grieving process.
You absolutely do.
Caregiving, as we know, and as I
know you talk about very
frequently with your guests here,
is an extreme burden, and it
frequently just puts you in
survival mode at some point.
Sometimes caregiving can be
manageable to a point.
For sure.
Especially as though someone with
a terminal disease and goes on
hospice or is at the end of life
and dealing with palliative care
and those type of things.
Because inherently things start
changing physically,
psychosocially, right, mentally
with that person.
Like I said, the burden of
caregiving then becomes greater as
that person declines.
And so, yes, that is going to be
very challenging.
And even though, like I said, I
knew what was coming, it was
still, there are still points
where you just have to go walk
into a bathroom, walk into the
closet, right, and just let it
out, even if you're not going to
do that in front of your person,
right?
So, what do you do when that grief
hits and the person you're caring
for still needs you and relies on
you?
Well, unfortunately, I was just
talking about this the other day
to a friend of mine as far as
caregiving goes and our duties
with caregiving, especially here
in the United States.
We ask for the loved ones, like
the most close people to these
people that are at the end of life
and dying.
We ask them to take on that burden
of caregiving, right?
And largely, those people,
unfortunately, do it alone,
especially when we're talking
about spouses, right?
We're usually talking about the
spouse taking care of the person
that they love that's dying and
other family members, if they're
even involved, only kind of
secondarily or tertiarily
involved, right?
Very kind of out of the loop for
the most part, and so,
unfortunately, we don't have a
choice unless we have caregiver
assistance of some sort, and I am
a huge advocate for that, for
getting assistance, and that's why
I'm a huge advocate for when
someone has a terminal prognosis
of six months or less, get hospice
involved, right?
Because at the very least, you
know, we're not allowed to be
primary caregivers and come in and
take over that burden, but we do
have ways to help alleviate some
of it, right?
And so, even alleviating a portion
of that, it is just one of those
things that the way our society
and our system is set up now, that
we are asking caregivers, and
especially spouses in these
situations, to not only still be
in the role of that family member,
of that loved one, but also take
on the role,
which is a different role, which
is a different role of caregiving
and providing physical care for
someone.
So, it is an extreme burden.
It is very lonely at times, right?
But we have to, when we're
breaking down, we have to just do
our best, unfortunately, to get it
together long enough to deliver
whatever care they need until we
can kind of have our own space to
fall apart.
And that's, unfortunately, the
reality of it.
You mentioned we ask of, we ask
of, it really makes me wonder and
think about who that collective we
is, and if there are enough voices
represented in that we.
And maybe the we needs to change a
little bit, and that might shift
the perspective on what caregivers
need to take on or should be
expected to take on, and maybe
what needs to be provided more
universally.
Absolutely, I agree with that
100%.
I think the we is a societal
change, right?
We can't, I don't think we can
rely on our government to do it, I
think, or governments to do it.
I think this is something that we
have to have advocates in this
space, we have to have people with
voices in this space, and we have
to educate, right?
And this is, again, what my
platform I try to make it all
about is education about this
stuff, because we don't talk about
it.
We don't talk about death and
dying, but everybody does it.
And so, talking about the burden
of the caregiver that we as a
society, as the system that has
been developed and that we're
operating under, we as a society
are asking one another, as our
most precious people that are the
closest to us are dying at the end
of their life, we're asking them
to also take on the burden of
providing basically all the care
for that person.
And that completely ignores that
that human being that's in that
space doing that also needs
support, right?
There's so little caregiver
support as a whole, and there's so
little thought given to the role
of a caregiver that's also a
husband, a wife, right, trying to
hold a family together.
I see young couples all the time,
both men and women, that are about
to be widows and widowers with
kids, right?
And so, we're still asking those
people, oh, you're going to be the
caregiver for your husband or wife
as they're on hospice for the next
three to six months and watching
them decline and watching them
die.
At the same time, you're also
going to be raising those kids in
that same house.
So, there's not a lot of thought
given, I think, as a whole to the
role of caregiver as a human
being, as someone who is also
vulnerable in that space and about
to be losing the person that
they've built their life with or
that is very important to them as
their family member, whatever that
role is.
But we just don't have much focus
at all on caregivers, and I think
we have to change that.
When a caregiver has been losing
someone they love a little bit at
a time, sometimes over years, how
does that final loss affect them
differently compared to someone
who loses their person suddenly?
Great question, and this is
another one that we talk about a
lot, and that is that anticipatory
grief, right?
And so, what happens when someone
has a terminal disease that is a
little prolonged, right?
And cancers can do this,
classically, your dementias,
Alzheimer's, Parkinson's, those
things that their cognition starts
to go, their functionality starts
to go, but it goes over a period
of years usually.
As we, as we, as they suffer those
losses, we also suffer those
losses, and we grieve the losses
that they're suffering because
they are changing as people too,
right?
We lose sometimes the ability to
just have a normal conversation
with someone if they have these
dementias and these
long-progressing diseases.
So, you are losing the aspects of
that person kind of one at a time
or a couple of things at a time
that you intrinsically built your
life with, right?
And so, that person is changing,
not the same person that we know
by the time they die.
And so, a lot of times when
someone that has had a loved one
or a husband or wife with one of
these long-progressing diseases,
they don't realize it.
Again, most people don't realize
they are grieving, but by the time
that person dies, one of the big
emotions they feel is relief.
And then, they immediately feel
guilty about that, right?
Because who just loses their
husband or wife and feels
relieved, right?
I can tell you, I felt that
emotion with my wife, Sonia, for
sure, because she had a long
course, a lot of treatments, years
of surgeries.
And so, there was a lot of
anticipatory grief there.
And I watched her suffer to try to
stay alive.
And so, by the end of her life, I
was relieved for her, right?
And then, many caregivers that are
caregiving for their loved one for
months and years at a time, they
feel the same thing.
They feel that relief.
And their relief can be, A,
watching them suffer all these
years, lose themselves, suffer all
these losses, and they're relieved
that that piece is finally over,
right?
And that they're no longer
suffering those things.
The other piece of relief we get,
to be honest, is from caregiving
itself, right?
Because caregiving is hard in not
just physical ways sometimes, but
emotional, even spiritual ways,
right?
Caregiving can be such a burden
that people start to even question
their faith.
So, it is that serious, and there
is that much that goes into it.
But when we go through
anticipatory grief, many times,
one of the things we feel when our
person actually dies is relief.
And we feel like there's a little
bit of a weight lifted off us,
right?
Then again, like I said, we
immediately feel guilty.
And that's a common thing.
We all do that.
Can't help but realize, though, in
hearing, and I can imagine
corroborated by so much of your
experience,
a lot of that relief is empathic
and altruistic towards the person
who is suffering, to the care
recipient who is no longer here.
And I think that needs to be the
counterthought against the
automatic guilt and sometimes
shame that develops with that
sense of relief.
Absolutely, yeah.
And that is one of the aspects of
it, right, that we're relieved
that they're no longer suffering.
We're relieved that that, that
what they've, I was relieved that,
you know, my wife put herself
through multitudes of surgeries,
chemotherapy, radiation, brain
surgery, lung surgery,
like all kinds of little pieces
being taken away to try to
eradicate that disease from her
body.
And I watched her physically
suffer, mentally suffer,
spiritually suffer.
And so, yeah, by the time she let
go and was out of this world, it
was a relief to not watch her have
to suffer anymore in order to stay
here and be here for people that
she loves, right?
That was part of that relief.
Again, part of the relief is the
burden of caregiving is great,
right?
And it's okay, I think, as humans
for us to acknowledge that, right?
If we don't acknowledge that, I
don't think we're ever going to
get the focus enough on caregivers
to make any meaningful changes.
I think we have to highlight the
fact that caregivers are human and
that they are suffering as well as
they're going through watching
their people suffer.
I think caregivers are truly
witnesses.
Absolutely.
The final witnesses, right?
You know, Les, two siblings can
lose the same parent, but one of
them has spent years looking after
them and caring for them.
What might that caregiver be
grieving that even their own
family just doesn't fully
understand?
Yeah, I've seen this time and time
again in my experiences as well.
And again, it's anyone that hasn't
done that primary caregiving had
that burden of being that person
and being responsible for all of
those things.
The one sister that is in this
scenario, that primary caregiver,
is investing more time, right?
More effort, a lot of times more
emotion just because they are
literally physically there.
And they're there to witness all
of those things.
And so the grief will probably
look a little different as well
from one sister to the next
because, and I've seen this too in
hospice when we've got a sister
that's a primary caregiver and
another sister that's out of
state.
And the other sister that's out of
state will call and, you know, get
updates, but they're not seeing
the real, the big picture, right?
And what's really going on.
So a lot of times they'll come in
maybe the last week or a few days
of that person's life when they
know they're about to die.
And so they're usually shocked by
the state of what's going on, what
their parent looks like, because
physically people change the way
they look at the end of life.
The things that have changed as
far as breathing changes, if
they're coming when someone is
transitioning or actively dying,
which we see a lot, people coming
at the last hour.
So they almost immediately have a
lot of questions about what's
going on.
They usually are a little bit high
stress and panicked a little bit
because they haven't witnessed
everything that led up to that.
And they haven't had a chance to
really interact with the people
like me that teach them the things
that are going to happen.
So that grief is almost more like
more akin to someone dying more
suddenly, right?
Because they just weren't prepared
and they didn't really necessarily
start that anticipatory grief like
the sister that was there, right?
So those things can look
definitely different for sure.
I want to change gears a little
bit.
Sure.
When you've been the primary
caregiver going 100 miles an hour
for months or years, what happens
when the caregiving suddenly stops
and you hit that wall of grief?
Yeah.
And this is another thing that you
deal with, especially when we get
to that final moment, right?
We've been caregiving.
We've been going through maybe
anticipatory grief.
And then we get to that moment.
And then the days after, right?
And usually what that looks like
is silence, right?
Because what's happened is you've
been, like you said, 100 miles an
hour every day, nonstop, sometimes
upwards of 24 hours a day, right?
Sometimes as someone is declining,
we're hypervigilant, hyperalert.
We're at 2 in the morning popping
up to check on people.
We may be up every couple of hours
through the night to check on our
loved one.
Physically, again, draining,
emotionally draining.
And so we get to the end of that
person's life and we feel that
relief.
And then we feel guilt.
And then we start replaying
everything that's been going on
because our brains are actually at
that point probably traumatized,
right?
There is a certain level of just
trauma.
And I think one of the things that
has been coming to the forefront
lately, too, is talking about
caregivers and these experiences
leading to legitimate PTSD, right?
Like you can have post-traumatic
stress disorder because of
caregiving and losing someone.
And so, again, I think we have to
really focus on caregivers and
aftercare, right?
So, one of the things that we
provide in hospice is bereavement
care, which means counseling
services, support after a person's
loved one dies.
And we're actually, that is one of
the things that is built into the
Medicare benefit here in the
States is that we must provide
bereavement support.
Now, if you ask me, do we do that
great all the time?
No, a lot of hospices kind of do
the minimum requirements.
It's a tough space because many
people don't want bereavement
services or don't think they want
any kind of bereavement services.
This is another one of those
things, especially here in the
West and specifically in America,
we are all like, right, very
independent, strong people.
So, we have this culture where if
we ask for help or seek help,
we're conditioned to then judge
ourselves for that, right?
But one of the most important
things, and I tell people all the
time, I've started doing on my
platform lives on Facebook and
just Q&As where people can talk.
I specifically started that for
hospice Q&As, right?
Like people going through hospice
and their loved ones on hospice
come and pop in and ask me a
question.
And what I realized was after
probably a month or six weeks of
doing these lives, the people that
were gathering in that chat, in
that space, were all people who
were grieving, right?
And people, caregivers of hospice
patients and their loved ones were
dying and their anticipatory
grieving, right?
So, it's amazing kind of how that
space transformed itself into its
own thing.
And I look at that kind of as the
universe saying to me, hey, I
think you need to talk more about
grief.
And I think you need to probably
be in the space of grief support
as well.
And so, one thing we're going to
do is start a private Facebook
group that's just a grief support
group.
There are thousands of them out
there already.
But there's people that have
specifically come to my platform
and need a space to do that.
So, I'm going to create that form.
But I think as many of those
places as we can have for people,
it's not – we have to do some of
these things ourselves from the
grassroots and not wait on other
people to do them.
Imagine somebody going 100 miles
an hour might consciously choose
to not engage in anticipatory
grief because there's no time or
it's not part of their – I guess
their self-image of what they
expect for themselves as a
caregiver.
But I could see choosing not to
and to just turn your back on that
could really create a big wall to
face when the grief really hits
later on.
Is that accurate?
I would say somewhat.
I think – and kind of the way I've
seen it happen and the way it's
even happened with myself, right?
My wife, Cassie, when she died in
2005, I did go through
anticipatory grief.
Her course was only 13 months.
But when I look back, yeah,
absolutely.
As she suffered those losses, I
was grieving while I was
caregiving.
But I didn't recognize it.
I had no idea that's what was
happening.
So, I think part of it, yes, there
are maybe aspects where you can
consciously say, I'm not dealing
with this right now.
I'll handle that later, right, and
push some of that off.
But I believe some of the grieving
we do as far as anticipatory grief
happens regardless of whether we
want it to or not, right?
So, yes, there are some, I think,
you can consciously say, all
right, this piece I'm not dealing
with right now.
But for a lot of it, it's highly
not by choice that you are doing
it or not doing it.
It is occurring and you are
feeling it, whether you're
conscious of it or not.
And a lot of times with
anticipatory grief, what I've
found as I talk to people about it
and as I educate about it, the
things that I bring up in the
videos that I do, people will
comment, I didn't even know I was
doing this, right?
And this hit the nail on the head,
right?
But they didn't know that they
were anticipatory grieving as it
was happening.
So, sometimes, yes, largely, I
think, we just are grieving
regardless of whether we choose to
or not.
Does grief always hit immediately
after death or can it come
crashing down weeks or months
afterwards when the caregiver only
then finally has time to sort of
feel the loss?
Yes, it can and quite often does.
There's, again, that mode of
caregiving is something that a lot
of times for us, we're in for,
again, months or years.
So, you have to think if you have
done something over and over and
over again and that has been your
life for months and years, it's
not an immediate thing that just
shuts off when that person stops
breathing.
For many people, I've seen many
people that have gone through this
and they don't cry at all when I
go to pronounce their loved one.
They may not cry at the funeral or
the memorial.
They may still just be in a mode
of dealing with the shock of all
of these things that they were
doing now not needing to be done,
right?
And those roles that they had,
right?
Because a caregiver is a role,
just like a husband is a role,
like a son or a daughter is a
role, like a mother or father is a
role.
We have these roles and caregiver
is a separate role that we're
asked to do as loved ones, right?
And so, sometimes that role, your
brain is not going to
automatically shut that off,
right?
And so, there are times where I've
had people that, you know, were on
a schedule for giving medications
for weeks or months and they had
alarms set to get up at certain
times if they were asleep or
remind them.
And even when they turn those
alarms off, guess what?
At that time, they're conditioned
already to do it.
So, they're awake.
They're thinking they have to do
it.
And then, guess what?
Then you remember, oh, that person
is not here anymore because just
for a moment, you're in that
caregiving mode and you're just
doing the same thing for the same
person that you've done for years.
And then to realize it many times
when you have those moments, that
is when that grief can really
start crashing in because you've
not only lost that person and that
relationship,
but you've also lost part of your
purpose, right?
Because caregiving becomes, for a
lot of us, our purpose and our
job.
It can really define us.
If someone's been engaging in that
process of anticipatory grief for
months or years, what happens to
that grief when the person they're
caring for finally dies?
Does that form of grief get
heavier?
Does it change shape?
Does it become something
different?
Are there, is there a new form of
grief that arrives when someone is
no longer with us that's clearly
different?
Yeah, I think there is.
I think there's a, it's hard
because I think a lot of it is
nebulous.
So, a lot of it kind of ebbs and
flows.
That's a good point.
But, yes, it, the grief feels
different, right?
Again, a lot of people that are
going through anticipatory grief
don't even know they're doing it
and don't realize it until
afterwards.
And sometimes not even until
somebody like me says, oh, did you
know you were, and you were going
through anticipatory grief?
They never put it together
because, again, not one of those
things we talk about a lot.
The grief looks different in that
that person is no longer
physically there, right?
So, then I believe we start
grieving in a different way and we
actually start grieving the true
loss of that person, the physical
loss of that person.
Whereas with anticipatory grief,
mostly what we're grieving is the
smaller losses.
Somebody in one of my, in one of
my videos commented when I talked
about this and I was talking about
anticipatory grief and said, it's
like a thousand little deaths,
right?
Like all of these little losses
that build up as someone is
declining and that they're
suffering, we're suffering those
little deaths as well.
And so, when we get to the point
where the person is no longer with
us and they're physically gone, a
different sort of grief comes.
And I think that kind of grief is
more the realization of being
alone, of losing those rules, of
no longer being a caregiver and
figuring out what your purpose is.
Because for so long, your purpose
was being a caregiver.
And so, I think one of the things
that I've seen, especially since
I've started this platform and
been talking to more people about
grief, is the loss of their
identity, right?
And just not knowing who they are,
A, without their person, but B,
now that they're not in the role
of a caregiver anymore.
You've witnessed a lot of
individuals transitioning through
that doorway in caregiving, if you
will.
Can the emotional exhaustion of
caregiving make the final loss for
an individual even harder to bear
if they're just completely
exhausted?
And can you intervene even before
death to give them a better chance
to make it through?
So, we do try, obviously, to do
that.
One of the things we do in
hospice, and we talked about this
last time, is we offer a benefit
called respite,
which is just a handful of days
where we can take over primary
caregiving for that caregiver to
give them a break.
That does involve taking that
patient out of their home and into
a facility where we do that.
Not enough people take advantage
of that, I think.
And that's one of those things
that, especially, I mean, our
nurses do too, but really our
social workers and our chaplains
that are visiting with patients
and families are really cognizant
and really trying to get people to
use that piece of the benefit.
Again, not very highly used
because, as you can imagine, and I
never took advantage of it either
when my wife was on hospice just
because, again, it was my duty.
I was the caregiver, right?
And the guilt that I knew I would
feel just by saying, hey, I need a
break because that's what it's
for, precluded me from ever using
that benefit, and it does for a
lot of people as well.
The other thing that we do on the
hospice side is with our
bereavement services, we don't
wait to start bereavement services
until that person dies, right?
So, we are constantly, in fact,
when someone comes on to service,
one of the pieces of assessments
we have to do is the caregiver
assessment.
And we call it a bereavement risk
score, right?
Like where they are.
And so, there's a whole form that
we go through and a questionnaire
that we go through to evaluate
kind of where someone might be in
their grief and how we can address
those things and what the risk is
going to look like when that
person dies.
So, we do try to be thoughtful
about those things and then try to
provide services and counseling
even as they're caregiving.
So, that is one of those things we
do.
Again, do people accept it enough?
No, they don't.
And is it as good of a program as
I think we could have?
No, I don't think so.
I think we need more support.
But again, it's almost a two-way
street.
So, I know your audience is
caregivers.
So, the one message I would get to
them is if you're being offered
help and support, do not be afraid
to say, yeah, I think I do need
some help.
I think I do need some support
because otherwise, it's definitely
not going to come knocking at your
door, unfortunately.
That's just not the way it works
right now.
Is that bereavement risk
calculation and engagement, is
that standard across the board in
hospice care in America and part
of the expectation?
Or is it sort of part of your
center where you work personally?
It is.
Every hospice I've worked for.
Now, when you look at the Medicare
rules, and I don't want to get too
much into the minutia of that,
they're not super specific, which
is why there is areas for
interpretation and people to do
kind of that minimum.
But yes, it is a standard
assessment tool that we use for
bereavement.
Les, when your last memories of
someone are of caring for them
through their suffering, their
illness, and their decline, can
those memories actually overshadow
the life you shared before giving?
I think if we allow them to, yes.
And I will say, grief changes over
time.
One thing I have learned is that
we walk with grief hand in hand,
right?
It's part of us when we lose
someone, but it changes, right?
And kind of the shape of it
changes.
The burden of it can change too,
right?
So I think initially, yes, the
exhaustion from caregiving,
especially for those last weeks
and days and hours of a person's
life.
Because again, we're asking people
sometimes to get up every few
hours in the middle of the night
and medicate.
It's physical exhaustion, it's
mental exhaustion, it's spiritual
exhaustion, all building up at the
same time.
And so, yeah, absolutely, I think
when that person dies, we can have
a profound exhaustion that just
causes us to maybe not grieve the
way other people expect us to
grieve, right?
And so that's another big thing I
think that we have to talk about
with caregivers and grief is the
perception of friends and families
that weren't involved or weren't
that close and closely involved in
that person's, the end of that
person's life.
And then their expectations versus
what a caregiver might look like
in the days and weeks after that
person dies may not look the same
at all, right?
Again, that anticipatory grief
means we've already been grieving
for a while.
So we may get to that point.
And again, we may not shed the
tears when people think we should
shed the tears.
We may not look profoundly,
depressingly sad every time
someone expects us to look that
way.
And that goes for all people that
are grieving, right?
There's no map to it.
There's no, hey, you should be
doing this at this time.
People ask me all the time in
comments and in the chat, you
know, when will this end or when
will this happen?
And a lot of those people will
say, where are you at?
You know, well, my husband died a
month ago.
Well, a month ago might as well
have been yesterday as far as the
world of grief goes, right?
And so, yeah, it can definitely
look different when a caregiver
has finished this journey and
they're just exhausted.
And that can look a couple of
different ways.
It could be the look that they are
profoundly sad and they can't stop
crying all the way to the other
end of they're still in such a
state of shock or they're so
relieved that they don't feel that
burden.
And so they're not reacting in the
same exact way that you would
expect them to.
I guess a shout out to caregivers
everywhere is that in those
moments, you know, you might feel
vulnerable, but you also need to
be strong.
And strong against one thing is
others' judgment.
No one should be prescribing how
you mourn or how you react or how
you grieve, especially with the
journey you've been on.
No one understands the way a
caregiver understands.
No, unfortunately, it's one of
those things, like I've said
before, that unless you walk in
those shoes, you're never really
going to understand.
And so from the side of a
caregiver, one thing I will say as
another word of encouragement is
don't worry about what other
people think.
Because if they haven't walked, if
somebody hasn't walked in my
shoes, their opinion isn't super
valuable to me, especially in
those moments because those
emotions are, and that burden is
so great that if you've never done
that before and you've never
walked that path, it's hard for me
to value your opinion.
And in fact, funny enough, one of
the video I'm actually going to be
doing today after we get off is
about people telling you how
strong you are.
And, you know, people will come up
to you after your loved one dies
and like, oh, you're so strong.
We don't want to be strong.
We didn't ask to be strong.
We've had to be strong, right?
And so while all of those things
and a lot of things people say to
those that are grieving and
caregivers that are grieving are
usually out of kindness, right?
They don't necessarily know what
to say.
There's all these cliches that
people throw around.
But when you walk in the shoes of
a caregiver that has spent months
and years of caregiving and their
person dies, those words just,
while we understand they come from
a place of goodness and kindness,
they fall pretty hollow on us.
Because I want to be able to say,
yeah, I'm not strong, though.
You don't understand.
Like, I don't want to be strong.
I want to be able to just be able
to be sad or be able to grieve and
not have to put this front on of,
yeah, we're soldiering on and
everything's going to be okay.
While I know in my heart, yes,
life is going to move forward and
my life will look different,
right?
And I may not be the same person
anymore, I will survive this and I
will grow from this, but I don't
need other people telling me how
strong I am and trying to pat me
on the back for that because I
don't feel strong, right?
A caregiver can spend months or
even years hoping for one more
good day, one more meaningful
conversation, perhaps one more
chance to repair something that's
never quite healed in their
relationship.
When that person dies, how do you
grieve not only the person you've
lost, but everything you were
still hoping might happen between
the two of you?
Yeah, and it's, again, very
common.
And there's a lot of, especially
when we talk about complicated
relationships, when we talk about,
and I've talked on my platform
several times about being
estranged from parents or other
family members and then them
dying.
And what we might think our
obligation is to try to repair
those things.
At the end of the day, and I will
say this as someone who, I have a
no-contact parent from my choice.
Who is aging, right, and who I
anticipate at some point is going
to be declining and ultimately
die.
And so, I believe those are very,
very personal decisions as far as
how we interact and how we even
carry our grief for that because
usually it is complicated.
Usually, if you've had someone
that you've had a complicated
relationship with, that there's
been abuse, neglect, something
like that involved, then those
emotions, while they're always
going to be there, right?
And then when they die, it's
complicated by the fact that
you're never going to get that
resolution.
So, I, again, always, and I've
done this, I always suggest
professional counseling for those
complex type of emotions that
you're going to face after that
person dies.
I hope that answers most of that
question.
I think so, and, you know, to your
point, there can be space created
for that reconciliation in the
setting of estrangement, and it
may be worth knowing if you're
estranged from someone who's
passing, who will be passing soon.
Knowing that you made the effort
without expectations of the result
might actually be part of your own
grieving process.
It certainly can be.
Yeah, it certainly can be.
And, again, we in hospice deal
with these situations every day
almost, you know, where you've got
estrangement or you've got
different family members that
aren't in agreement, right?
Or there's history.
All families have these kind of
histories.
And so, navigating those things
can be challenging, obviously.
The one thing I tell people,
especially people that are
estranged by choice because of,
you know, abuse, neglect, whatever
that looks like, is that they have
to do what will ultimately be
right for themselves, right?
They have to take care of
themselves.
If you've been a person that's
been abused by someone or
neglected by a parent or anything
like that, ultimately, I am never
going to stand in judgment of your
decision to either try to
reconcile or not.
But knowing that you should go
into that and be thoughtful about
what the consequences of either of
those things might be as you make
that decision.
And that's what I've had to do
myself.
And, yes, there can be space for
reconciliation.
I have seen it happen.
I've also seen the opposite happen
where a no-contact child refuses
and just says, let me know when
they're dead, right?
Let me know when they've passed.
And that is their decision to make
that point their piece of closure
or whatever that looks like.
I don't know that you ever
necessarily get 100% closure from
any of that.
But, again, that is why I am
always an advocate for counseling,
talking to someone who is
experienced in grief.
And this is why in hospice we hire
people specifically that are grief
counselors, right, and that are
trained to do those type of
things.
You've witnessed so much, Les.
I mean, a caregiver can
desperately wish their loved one
were still alive yet feels so much
relief that caregiving has ended.
What happens to their grief when
those two feelings collide?
Complication.
Complication, right?
And feeling guilty for feeling
relief.
It's really tricky.
We carry, I think, as far as
caregivers that are grieving after
the loved ones die, I think we
carry a lot of guilt because of
anticipatory grief and because we
don't talk about anticipatory
grief and nobody even knows what
it is.
For the most part.
For the most part.
I think that's why it's so
important to have these
conversations because I think a
lot of people feel guilty for
things that are just natural
feelings that they're having, like
relief, right, that are inherent
to go along with the process of
anticipatory grief.
So, you've already done some of
that work, not even knowing it,
right?
So, then to feel guilty about
that, you're feeling guilty
because the perception is you
should be grieving and you should
not already be in a place where
you feel relieved that your loved
one is gone, right?
And you feel relieved from the
pressure of caregiving.
How could you feel that way?
Well, you walk in those shoes,
right?
You suffer that exhaustion.
You spend your entire, sometimes
years of your life that that is
your, basically your profession,
right?
And you may actually have a
profession on top of that.
You may actually be working a job
and caregiving, which is in itself
its own full-time job.
So, yeah, the exhaustion is real.
So, it's hard, I think, for a lot
of people to reconcile those
feelings and they don't understand
how they could be a decent human
being and feel relief.
At the same time, they can still
feel that grieving.
And that's where you get a lot of
the guilt come in.
So often, there are these
undertones and so much needs to go
into education about these
elements as we navigate our own
journey as individuals, but as
families and collectives.
You know, I can't help but just
sort of sit here and think.
It's as though, you know, as we
enter the middle passage, to use a
term, we should all go to middle
passage boot camp.
And do a couple of weekends and
learning about all this stuff as
individuals and as a collective
and as a society and maybe just
take it on differently.
And with that arm of education
and, you know, the learners come
from within our own communities as
do the teachers.
Absolutely.
And maybe that's the rebirth that
we need.
I think so.
You know, we're just in a
different place and time than we
were 100 years ago, 150 years ago.
When we had smaller communities,
you know, if you go back hundreds
of years ago, we were tribal,
right?
And so, the tribe took care of
everybody in that tribe, right?
And so, when you had someone at
the end of life, it wasn't just
one person caregiving.
It was a shared collective burden.
And so, our society has shifted so
much and the world's shifted so
much.
This is just how we've evolved
that we are very—our communication
methods and the ways we can
communicate with each other are
endless, right?
It is the easiest time that we've
ever lived in to communicate with
another human being, even if
they're all the way on the other
side of the world.
Like, we can do it instantly.
But we're also, I think, in one of
the times, probably the worst time
for us feeling like we're alone
and feeling like we're isolated.
Because we don't have the
communities the way we used to,
right?
And even—and especially since we
all know since COVID, right, and
we went through isolations and
things like that, our society was
even further changed then.
And we all, I think, became a
little more independent, isolated,
even more than we already were.
So, I think the challenge is going
to be, how do we get this
education in front of as many
people as possible?
How do we bring back that, hey, we
should collectively be taking care
of one another, right?
And I think we've lost a lot of
that, and I think we've got to
figure out how we can get that
back.
Because otherwise, we're going to
continue to see caregivers that
are doing what they're doing now,
that are burning out, that are
becoming exhausted because they
don't either have the means for
support or support being offered
to them, or they're not accepting
support, right?
Because we are so isolated and
individualized and feel like we
have to do it ourselves.
And that message is certainly, you
know, hammered in through a lot of
different avenues.
Les, why might a caregiver feel
that their grief isn't real unless
they've suffered intensely in the
process?
I think that's because, again,
education and people not talking
about end of life and death and
dying and grief, you know.
I think that it's the expectation,
right?
It's when you see, again, same
thing with death, right?
We can talk, death and grief go
hand in hand, obviously.
But even the way we perceive death
is similar to the way we perceive
grief because we see grief and we
see death portrayed in social
media, in media, in movies, TV
shows.
And so because we have spent so
much time now getting our
education from watching fictional
things on television, right, and
feeling like, oh, this is what
this is supposed to look like,
obviously, because they showed it
on TV, even though, Doc, I'm sure
you can attest that almost nothing
that you see on a medical show
looks like what it really looks
like in real life.
Kind of the same thing, kind of
the same thing, kind of the same
thing, kind of the same thing,
kind of the same thing with grief,
and that is your perception of
grief, right?
So I think the perception becomes
reality.
And so then those going through
that grief, when that doesn't line
up 100% and look the same way, the
perception of people on the
outside is they're not grieving or
they're not grieving the way
they're supposed to.
And I've been asked, how am I
supposed to grieve, right?
Again, there's no playbook.
There's no manual.
We feel things because we're
human, when we feel them and how
we feel them.
And I think we have to wrap our
heads around being okay with that
and being okay with watching other
people and not knowing what
they've been through and not
judging them in their darkest
time, right?
Even if it doesn't look like what
we expect it to look like.
That's pretty wise words there.
Bess, I'd like to focus a little
bit on a theme here.
And it's about how a caregiver can
keep living after their loved
one's death without leaving them
behind.
And we certainly know after the
person you've cared for dies, the
world carries on exactly as it
always has.
And people are laughing at jokes,
complaining about the weather and
going on with their lives.
But your person is gone.
And you're not the same.
Why can being surrounded by that
normalcy that carries on make it
so difficult for a grieving
caregiver to feel like they can
put one foot forward and end up
feeling just so alone?
It's, again, very common to feel
that way, right?
The loss of, especially, again,
spouse for sure, is so profound
because, again, you're literally
losing basically a piece of
yourself, right?
And it sounds very cliche, but if
you just go about your normal day,
if you're in this kind of
relationship, you're married or
you have a life partner, and you
think about all day long, all of
the things that you do, you think,
the discussions you have, they're
almost always going to be shared
with or discussed with or
experienced with that person.
And so, you're going along in the
world and moving along just like
everybody else is.
And what happens when you lose
that person is your world stops
because the person you are walking
with is no longer there, and we
stop walking for a while at least.
And so, then, for everything else
to just keep going by at the pace
that you were probably moving at
before or close to is
disconcerting, disjoining, you
don't know what to do.
It's a shock, right?
And so, then, when other people
have or just having their normal
day, you don't understand how they
can keep doing that, how they can
keep caring about the weather
outside, how they can keep caring
about that next week is a certain
holiday.
And so, then, who cares, nobody
cares about any of those things
when you're grieving and when
you're that caregiver who has lost
your person.
And so, yeah, it's one of those
things that to end up moving
forward again, it just takes time.
And everybody moves in their own
time.
This is just not matters deep to
the heart and soul of the
caregiver experiencing loss.
There's a neurocognitive reframing
that needs to occur.
When you build your life with
someone, the cognitive framework,
the way your brain thinks about
life and moments, has that other
person incorporated?
It needs to, I think,
physiologically deincorporate them
to give you the space to then move
forward in the active grieving
process and make room for new
memories, new connections, new
feelings of support, perhaps some
others who you haven't been in
close contact or reached out to
yet.
But there is a big reframing that
occurs, I think physiologically,
if you've been in survival mode
with your person, you have to exit
through a process.
And when I'm having these chats,
I'm thinking in the background,
saying like, it's almost like the
reverse experiment of what we hear
about everything that leads to
survival mode.
It actually needs to extract, you
need to extract yourself from that
mode.
And I think that's a
neurophysiological process.
I would agree with you 100%.
I'm obviously not a
neuroscientist, but I believe
you're exactly right, though, I
think.
Like, you didn't get to that point
overnight.
And just like anything else, we
become and our brains become
wired, right?
We have neuropathways,
neuropathways that get formed.
And so, those things form over
time.
And I think new ones that replace
those or amend those take time,
too, right?
They have to.
I've never met someone.
I have an experience where that
person has gone, and now we're
moving on, and it just doesn't
work that way.
Your brain has to be rewired, and
again, that takes time and pain.
It's going to be painful, for
sure.
Well, if you look at the
relationship literature, I mean, a
typical breakup is just that, some
rewiring of something.
And this is the big breakup,
right?
Correct.
If you've spent a lifetime with
your person, neurocognitively it
is.
You know, when a person you've
cared for dies, and you may be
hurting so terribly, but you sort
of just choose to keep it itself.
You want to keep it to yourself
because you just don't want to be
a burden on others.
Why can it be just so hard to let
others know and see how much
you're hurting?
Again, and this is classic for
caregivers that have done this
prolonged caregiving and lost
someone.
Because, again, they spend
sometimes months and years
caregiving and also, at the same
time, doing that alone.
And refusing help and being okay
and being strong.
And so, yeah, once that person
dies, that doesn't change either.
That wanting to do it alone, not
wanting to be a burden on anyone
else and feeling like we have to
kind of be martyrs and carry that
ourselves.
It's very, very common.
And so, yeah, my encouraging
words, again, are you're not
alone.
You don't have to be alone, right?
You're not the only person that's
gone through this.
You're not the only person who's
going through it right this
moment, right?
And there is support available.
And so, if that support gets
offered, A, seek it out where it's
available and then accept it,
right?
Because it is difficult for us to
do, but it's so necessary.
I encourage people, really, you
don't have to do it alone.
You don't have to walk through it
alone.
I think if our person was truly
that person, one of their dying
wishes may very well have been
that we show ourselves
self-compassion once they're gone.
And accepting help and letting
people in, I think, is probably
one of the most important acts of
self-compassion you can do as
you're grieving as a caregiver.
It absolutely is.
It absolutely is.
Isolation is the most dangerous
part of grieving, right?
Because we don't have that person
to talk to.
And so, that person that we would
normally do that with and share
everything with is gone.
And so, then to just turn around
and if you don't already have a
close relationship with someone
like that, to turn around and do
that with somebody else.
And for sure, a stranger, like a
grief counselor, can be very
intimidating, can be very scary,
but is extremely needed, right?
Because I'm actually talking to
someone as we speak who's had a
loss, who's doing some isolation
that is on the verge of being
dangerous, right?
Because in profound grief, but
even though people are reaching
out and trying to support how they
can, that support is being
rejected.
So, yeah, my encouragement for
them and for everyone listening
that's going through this is to
accept help, talk to somebody.
If you have a grief counselor
available to you through hospice
or otherwise, do that.
Talk to that person.
At least talk to them.
Because I know that we get in this
mode of caregiving, of being
strong and doing everything and
being independent.
But once that purpose is gone,
right, that purpose of caregiving,
once that person is gone, that
resource for you to be able to
actually have those conversations
with, then it's a huge void,
right?
And so, not that anything is ever
or anyone is ever going to be able
to completely step in and take
that place, but having someone to
talk to or a group of people, a
support group, whatever that looks
like, try not to isolate if you
can.
Because the isolation part is
really where we can get into
danger and kind of go into a
spiral.
What does it mean, then, to have
someone sit and be present and
simply share that grief with you
as you're grieving, rather than
having them try to just make it go
all away?
It's awesome if it's done
correctly.
And that's the key, right?
The key is how do you be present?
And being present really is a
little delicate sometimes because
we still have to do it on the
person who's grieving's terms.
And that can be challenging
because we just got done talking
about how as we're caregiving and
grieving after that loss, we're
trying to isolate, right?
And so, yeah, being present should
look like not being pushy, not
being intrusive.
As far as energy goes, calm,
quiet, and just letting the person
know, hey, I'm here for whatever
you need.
I don't know what you're going
through.
I haven't been through it before,
but I know it's got to be hard,
and I'm here.
And sometimes that's about all you
can do until that person says,
hey, you know what?
Maybe I'm open to having lunch.
Maybe I'm open to grabbing a
coffee.
You can't be too pushy because
then you're just never going to be
able to support that person
because they're not going to allow
it.
And that's a learned skill too,
right?
It's not intuitive, right?
We always, well, the first thing
we want to do is prescribe an
agenda for the person we care for
who's grieving and say, okay,
well, let's do this, or you got to
do this, come on.
But that can often backfire.
One of the things I think a lot of
people try to do that's just
inherently a human thing to do
because we do it for all the
people we love when they're going
through something hard
is the common thing of finding
something to distract them, right?
And so the difference is when
someone is grieving, yes, you can,
they're temporarily, temporary
distraction can be kind of a
method of dealing with grief.
But grieving people that are in
that kind of profound loss will
also reject being distracted,
right?
They sometimes want to talk to
someone about their grief and want
to talk to someone about the
depths of what they're going
through.
The difference is, again, remember
when I said, hey, if you haven't
walked through this, I don't know
that I really trust your opinions
necessarily.
But there aren't that many people
that have walked through
necessarily the same exact things
that all of us have walked
through.
So that person may not even exist
in that griever's life.
But the challenge can be like,
hey, I want to try to be here and
be present and help this person.
But the way that that person
that's grieving looks at it is,
you don't understand what I'm
going through.
You're telling me, you know, the
biggest loss you suffered was a
pet.
And so, yes, I understand.
And I'm not begrudging people's
grief over their pets.
I've been through that grief, too.
And it is real, by the way.
It is real.
It's not the same, though.
And I know people like to say,
well, you can't come, you know,
all grief is the same.
It's not.
It's just not.
Relationships are different.
The impact that those
relationships have on us
inherently are different based on
who those people are.
And so that loss is different.
And that grief looks different.
So one of the challenges to be
present for someone and to help
someone is just knowing that
initially it's an offer.
It's a prostrating yourself before
them and saying, hey, man, I don't
know what you're going through.
However, I just want you to know
I'm here.
I'm here for whatever you need,
anytime you need it.
Right.
And just that sometimes is enough.
You know, friends that will call
and say, you know, after my wife
Sonia died, I had friends and I
love them.
But they all wanted to take me out
like a week after she died to a
bar to watch a college football
game.
And I was not interested in doing
that at all.
Now, did I do it?
Yes.
Because I knew, hey, maybe a
distraction will help.
Well, guess what?
I ended up going out to a bar with
three couples, right?
Three couples and myself.
And so there's always this like,
oh, you're the fifth wheel thing
when you don't have a husband, a
wife, a girlfriend, a boyfriend,
whatever that looks like, right?
But when your wife dies and then
you're the fifth wheel, it's not
by choice that you don't have that
person.
And so then you feel and you
immediately start saying, oh,
yeah, Sonia would have, you know,
they would have, she would have
laughed at that.
What would she have ordered from
this menu?
Every single thing that you go
through in those events, you
automatically think, what would
she want?
What would this, what would she
said about this?
What would they have done about
this?
How would this, they reacted to
this?
Because you're used to them being
there to do those things.
So when they're not, it can be
even more isolating.
So you could be out in a crowd
with people and feel completely
isolated because of that.
When you've spent years caring for
someone you love and then you lose
them, is there really such a thing
as getting over that grief?
And like, what is getting over it
even mean?
Yeah, I don't use that term.
And I, in the group, the support
group I told you about that after
Sonia died that I was in on the
Facebook group,
it was strictly widows and
widowers and widows.
And so we kind of had our own
little culture there, but we never
talked about getting over our
grief.
grief is not something you get
over and it's not really something
you get through, right?
Because like I said, grief lives
with you, it becomes part of you.
So when you lose that person, you
lose a part of yourself and a
piece of that void that's left is
grief.
And that never goes away, right?
We always carry that with us.
It changes shape.
It changes the way it feels over
time.
However, there's a disclaimer I
would put there that it can also
just come back and be what it was
at any given time at any moment,
right?
And those are kind of those
triggering events that sometimes
we have.
When you're rolling down the
street, you know, my wife, Sonia,
has been gone since 2018, eight
years now.
And the other day, a song came on.
And guess what?
I pulled over on the side of the
road and was just in tears, right?
Because that song had meaning and
had memories tied to it that will
never go away.
Those memories, unless God forbid
I get some kind of dementia, those
memories are there.
And so when you run across those
things that bring up those
memories, that grief can come
right back, right?
And it can be very intense.
Now, is it the same intensity as
it is two weeks later, a month
later?
No, because those kind of triggers
can cause you to spiral for hours,
days, weeks.
Typically, as your grief matures,
I guess we could say, those events
will come and then they'll pass.
And we kind of go back into a
normal flow of life.
But there's never a moment in my
day that my wife, Sonia, or my
wife, Cassie, aren't somewhere
just waiting to be a part of a
discussion I'm having in my head,
a thought I'm having, thinking
what would they have thought of
this?
Like, it just, we don't get over
it, right?
And so we move forward, is what we
like to say.
We keep moving forward and we move
forward, but we're always going to
have a companion in grief, for
sure.
Big difference between moving on
and me moving forward.
I think, I like how you specify
that, because I think it can be a
lot more of a graceful journey
moving forward with grief, as
opposed to strangling yourself,
trying to move on from grief.
In a very aggressive way.
Yeah, yeah, because I think the
more, with grief, it's strange,
because I think the more maybe
conscious effort you put into
moving on, especially not knowing
that you really never move on,
that's one of those things that we
don't talk about, right?
I think you could put so much
energy into that, that it actually
backfires, right?
And then you don't move on, even
though you're expecting to, and
then you feel bad, and like you're
doing something wrong, because you
haven't moved on.
And so I have people ask me, hey,
when is this going to be over?
When am I going to be able to move
on?
And I tell them, it's not going to
be over.
It will change.
The feeling will change.
The shape of your grief will
change.
The burden of it will change.
But it never goes away.
And that's okay.
And I think if we actually had
that understanding of grief and
that kind of education about grief
as before we were experiencing it,
then I think our expectations and
the feelings that we feel and then
feel bad for, we wouldn't
necessarily feel so bad about
those things if we understood that
these things are normal, right?
And that it's normal to still be
grieving your wife 8, 10, 15 years
later, right?
Again, the grief will look
different.
It will feel different.
But to expect to have magically
one day where you are over it and
there is no more grief, that just
doesn't, it doesn't happen.
So much to learn in midlife boot
camp.
Absolutely.
Absolutely.
Les, if the pain of grief feels
like your last connection to
someone you've lost, how do you
begin to let that pain soften
without feeling like you're
letting them go?
Again, I don't know that it's a
conscious thing.
I think our brains, our souls,
just who we are as humans, we're
designed to change, right?
And we're designed to grow.
We're designed for those neural
connections to change and reroute.
And so I think, you know, feeling
like you have to have a point in
time that you're going to
accomplish something, I just don't
think that's the way grief works.
So I think just being able to
accept, right, what grief is.
But like I said, the big thing is
if we talk about it more and if
people can be a little more
educated about it and just to
break the taboo.
And that's one of the reasons I do
what I do on my platform and my
platform is more from talking
pretty much just about hospice
care and end of life care to
really being about 50% of the time
I'm talking about hospice and the
other half of the time I'm talking
about grieving and grief and those
issues.
Because I think it's so important
and I think it's so common for
people to have misconceptions
about grief and how they should be
feeling.
Les, you've cared for and lost two
wives to cancer.
And after loss is that
catastrophic, is it still possible
to build a life filled with love
and joy?
And what does that look and how
does that look like for you?
So it is possible.
I actually have remarried and
strangely enough, my wife, her
name is Cassie, which is the same
name as my wife that I lost in
2005.
She is also a widow and we met in
a widow support group.
And everyone is different, right?
And there are some people who will
tell me, hey, I was married.
I had my person and there's not
another person for me and I'm
never going to remarry and I'm not
interested in that.
I've been told that and then I've
watched some of those people years
later meet someone the universe
put in their pathway and ended up
marrying or being with.
My mother-in-law is about to turn
80 years old and she was widowed
about five years ago.
My wife was going to be upset with
me for not knowing the exact,
let's see, five or six years ago.
And she just remarried at 80 years
old because she didn't want to
find someone, but she wanted to
move forward with her life and so
became involved in support groups
and in her church and happened to
meet someone who was also widowed,
right?
And so it looks different for
everyone, but it is possible,
right?
And so I would say, especially
those that you've lost your spouse
and you say like, this was my life
and it's just never going to
happen again.
I think if you stop living your
life and that doesn't mean you
have to ever be with someone else,
it may mean that you're just
living your life as an individual,
right?
And you're doing things that make
you happy, especially for
caregivers that have spent years
and years and years in that mode
of caregiving.
It can be very difficult, not just
with the grief and the loss and
not just with moving forward with
grief, but also moving forward and
being kind to yourself and looking
at yourself and saying, hey, I
spent years doing this.
Maybe now it's time for me to look
at myself and look at the things
that make me happy and do those
things.
And so it doesn't necessarily have
to mean being in a new
relationship or moving forward in
that way.
It can be just moving forward and
living your life and focusing a
little bit on yourself, right?
Because we sacrifice a lot in
sometimes the years that we spent,
not focusing on our own health, on
our own happiness, on the things
that we like.
And it's not a selfish thing to
say, hey, it's okay for me to do
things that I like now, right?
I need to relearn it again, too.
You have to.
It's a learned skill.
Absolutely.
Les, I wanted to thank you.
Your commitment to educating is
priceless.
And while I know you can't do it
all yourself, I think it's a model
for what we need everywhere.
And I'm sure in your moments, you
hope that others take on that flag
and wave it.
What you've taught me today is
that in grief, there's always a
chance to move forward with grief,
with self-compassion and love.
That wraps up today's episode of
the Caregiver's Podcast.
We're so glad you were here to
join us for this very special
episode, and we'll see you again
next time.
Les, thank you for sharing so much
of your own story and for helping
us better understand what
caregiver grief can feel like.
I think what stays with me is that
grief doesn't follow a timetable,
and there's no amount of suffering
that proves how much we loved
someone.
You can carry that love with us
and still make room for joy in our
lives.
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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
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I encourage you to reach out to a
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Call your local emergency number
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away.
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Thank you for being here, for
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