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The cost & courage of caring - stories that spark resilience.
If you've spent any time on
Caregiver TikTok, you may have
come across Tiffany Lynn Smith,
the nurse and author behind At
Broken and Brave Health.
She says the quiet parts about
caregiving out loud.
She doesn't exactly sugarcoat them
either.
Today we're trying something a
little different.
We've built this conversation
around things Tiffany has said
and questions she's asked in some
of her most viral TikToks.
We're going to talk through those
ideas and explore them with her.
Hear the stories behind them and
ask what needs to change for
caregivers.
I'm Dr.
Mark and this is the Caregiver's
Podcast.
Tiffany, welcome.
Before we begin, please subscribe
or follow the show wherever you're
listening or watching.
It is free and it helps support
these conversations for those who
need to hear them.
Tiffany Smith, welcome to the
Caregiver's Podcast.
Thank you so much for having me.
We're really excited to have an
amazing conversation with you
and in the tradition of the
podcast, we're going to jump right
in.
I'd like to start with a line from
one of your TikToks.
It's heroic to be a caregiver, but
it sucks ass to be a caregiver at
the same time.
What does calling someone a hero
leave out about their life?
Yeah, I mean, I think that it gets
misconstrued when you're a
caregiver for someone who's
medically needy.
Everyone around you thinks that
you are just this wonderful hero
that is saving the day or saving
someone's life, keeping someone
alive.
And I think it gets lost that it
sucks.
It can really suck to be a
caregiver and to have to do all
the things that it entails.
And it can feel like it can feel
like it's ruining your life.
And even if, you know, you're
quote unquote heroic and a hero in
the situation, it easily can be
misconstrued with what's going on
actually behind the scenes and
what it's really like.
I think it's literally everyone.
I mean, I think definitely mostly
loved ones.
Other family members are calling
the primary caregiver like the
hero.
And then that can really mess with
the caregiver's brain because
they, it then adds pressure on to
them even more than they already
feel.
And then the care, you know, the,
the, the, the, the health care
team, for sure, most caregivers
are kind of brushed under the rug,
at least in my 16 years of
experience.
And I've done that to the
caregivers, like I have literally
basically just treated them like a
guest that is in the hospital
room.
And I'm just like, thank you for
taking care of them and just kind
of make them into a hero or make
them into just this kind of far
away thing that isn't really
manageable or touchable to, to me.
You know, you've also called
caregiving a blessing and a curse.
What are caregivers afraid to say
out loud about, about the part
that feels like a curse?
Well, I think most caregivers
don't want to talk about the bad
stuff at all because when they do,
they get shamed and blamed and
they get called like bad names.
I mean, the internet has been
horrible to me just for talking
about the bad things about
healthcare in general and why
there's things that need to be
improved, which there's a never
ending list of them.
But then especially of caregivers,
because, you know, they are,
they're placed in these boxes of
having to always do what's best
for somebody else.
And then they disappear out of
that.
And that's, that's true.
Very difficult to, to live your
own life and also be your own
person while caring for someone
else.
So in your experience, what's the
typical source of that proverbial
shush when you're trying to speak
of some of the truths behind the
real narrative that caregivers
face?
I think it's a fear of death and
dying is actually at the real root
of the issues with caregivers not
wanting to talk about how much it
sucks.
Because the truth is that most of
them feel and are probably correct
in feeling that if they did not
care for this person, they would
die.
We really as a society need to
start being more open about the
fact that that might be okay for
someone to, it's okay for people
to die.
Like, we don't have to keep people
alive until they're 100 years old
all the time if they don't have a
good quality of life.
And so I think when caregivers
are, are trying to talk about the
sucky parts of being a caregiver,
people are like, yeah, but if you
didn't do that, they would die.
Or, yeah, but you're their angel,
you're keeping them alive.
And I know many caregivers who are
like, yeah, but why am I even
doing this?
But they can't talk about that
publicly.
They get chastised.
Seems like more open conversations
need to be had just in terms of
more broad brushstrokes, goals of
care.
And that's not always an easy
conversation, but it's often a
rushed conversation or a protocol
conversation.
But there are subtleties that take
time to flesh out, to really
understand what a care recipient
is going through and giving them a
voice in that discussion.
Absolutely, yeah.
In another video that got almost 2
million views, you say, I've been
a nurse for 17 years and I want
out.
What have you been seeing that
brought you to that point?
The list is very long.
I think that my number one reason
why I don't want to be a nurse
anymore is the amount of
responsibility placed on a nurse's
shoulders versus the quality of
life that you have as a nurse.
I had so many comments on that
video that were like, yeah, but
you get paid well.
What are you talking about?
You don't get paid well.
Right.
So, we have just as much
responsibility on our shoulders
pretty much as doctors do.
Maybe, like, we have one step
below, let's say.
And we barely make the minimum, we
in most states actually do not
make the minimum of what it costs
to live in this country.
And so, it's not just the pay, but
it is the amount of crap that we
have to do as nurses, keep track
of, our legal responsibilities are
unbelievable.
And it just does not match with
the pay.
And the reason why that's a big
deal is because people get burnt
out on how emotionally and
mentally exhausting just being in
healthcare is, never mind being a
nurse.
And if you're not getting paid
enough money where you can live
well while doing that really
difficult job, it's impossible to
recover from and you eventually
leave.
Or worse, you have caregiver
fatigue, you have compassion
fatigue, you get burnt out, then
you start being grumpy, then you
start being less of a, you know,
not as good of a provider, and
then the patients end up
suffering.
And that, it's literally a vicious
cycle, and they, every, it seems
like every six months, another
major thing is added to nurses'
plates.
And that causes a problem.
And then caregivers actually
suffer because of that.
Because we don't have time to
educate, teach, sit with them,
have those super important goals
of care discussions.
I mean, yeah.
And then my second major, major
reason why I want out of
healthcare in general, and why I'm
trying, why I am starting my own
business, is the lying.
I can't do it anymore.
The healthcare system lies to
people all of the time.
It is more normal to lie than it
is to tell the truth.
And it is disgusting to me.
I don't want to do it anymore.
I have to lie to people about
effectiveness of drugs.
I have to lie to people about
effectiveness of treatments.
I have to push treatments, drugs,
vaccines, all of these things on
people that I really don't believe
in.
I don't believe the studies
anymore.
I really don't.
Why do you need to push?
You're not the prescriber.
Right, but we are expected to.
We're part of the cogs of the
wheel, right?
So, even though I'm not writing
the prescription for, you know,
the pneumonia vaccine, I'm
supposed to have my whole spiel
about why it's important to be
vaccinated.
And you're a high-risk patient
because you're over 65 and
da-da-da-da-da-da.
Take your medications when, let's
be honest, okay?
I'm a hospice nurse.
Right now, I'm a practicing
hospice nurse.
And I will tell you that when
folks sign up for hospice and come
off of their medications that
they've been on for years and
years, they are better.
Like, they're almost always better
when they come off these drugs
that are pushed on them.
And I just, I don't think that
they're studied well enough.
I don't, I, and I feel like I have
to lie all the time.
And I am not willing to continue
to do this forever.
Well, I think a lot of, a lot of
the drug trials that focus on very
controlled conditions to show
benefit are one thing.
But once you have polypharmacy,
and by polypharmacy, you're often
looking at 15 to 25 medications.
Yep.
There's a whole new realm of
interactions that nobody can keep
track of.
And we've seen it, especially in
geriatrics and other related
fields as patient age, to actually
de-escalate the pharmaceutical
list of things patients are on.
And it's interesting eyewitness
that you mentioned people feeling
better.
You know, what I'm hearing, what
I'm hearing with your pain is that
you went out of nursing because
you can't nurse.
You're doing everything else.
A hundred percent.
And young nurses coming out of
nursing school, from what I've
heard, are asking themselves,
I thought I had, I thought I was
learning how to nurse and I was
going to nurse, but everything
else is sort of creeps in once you
get into the real life of a ward
or a unit.
Is that what you're seeing with
the junior nurses and your
entourage?
Oh yeah.
You get thrown into this
bureaucracy, which these
especially youngsters in their 20s
are like so caught off guard.
They think that they're going to
help people get better by doing
CPR if someone dies, they're going
to give them their medications,
they're going to give them IV
antibiotics, they're going to get
to start IVs and take blood
pressures and monitor them and
look at their, you know, EKG
strips and do all these nurse-y
things.
And that is like 25% of your job
as a nurse, to be honest.
And then the rest is making sure
everybody else is doing their job,
making sure that the patient is
happy, not just being saved, but
they have to be happy on all
aspects.
Like, I've had to climb on tables
or chairs to fix televisions.
And like, nursing students just
don't, they don't understand that
until they get into the actual
business of being a nurse.
And then you're thrown onto all
this bureaucracy of like, your
charting is so important, we'll
never get paid if you don't chart
the right things.
And then your charting is sent
back to you and charting is like
60% of your life.
And so, I mean, especially in
something like home health and
hospice, I am with the patient for
25% of the time and documenting
75.
And it should be the exact
opposite.
Even in hospice?
Mm-hmm.
Wow.
It's so documentation heavy.
Yeah.
So what does that look like for
the family caregiver trying to
actually get the help for someone
they love?
Exactly.
That's exactly why I'm starting
Broken and Brave Health, because
there is none.
There is no time to dedicate to
these caregivers, who, by the way,
become nurses, social workers,
physical therapists, occupational
therapists, speech therapists,
doctors, basically.
I mean, the family caregivers have
to take on 500 roles with no
education, and they're literally
thrust into this.
And then every time there's a
worsening medical problem, they're
thrust further down the road.
And they're not, I, as a
practicing nurse, barely have time
to educate.
Like, as a hospice nurse, I can,
my number one priority is teaching
people about medication, how to
medicate their dying loved one.
Because, I mean, how else are you
supposed to manage their symptoms?
But there is so much more that
comes with caregiving.
And they are very affected by even
just that what I can speak of,
which is the load of a nurse.
I should be able to spend twice as
much time with a caregiver than
I'm able to.
And it affects them very
negatively.
And I've talked to many, many
caregivers who feel exactly what
I'm talking about.
They're thrust into this.
They have no idea what they're
doing.
They don't even know barely how to
move their loved one around.
I mean, simple, simple things.
How to get them to these 7,000
appointments that they now have.
Like, things that you just don't
think about that have to be taught
somehow.
And they just aren't.
They're just thrown to the wolves.
But with hospice, there's usually
a change in the frame of mind.
There's a cognitive shift that
occurs.
Because once you enter, like,
we're not talking home care.
We're talking about hospice, which
is usually where there is some
degree of foreseeable decline in
the not-so-distant future.
Yep.
Why are there still 7,000
appointments?
There aren't really appointments
with hospice necessarily.
But there definitely is a level of
now taking care of someone who's
total care that may not have been
before.
So, the appointments thing is more
for, like, the actively getting
treated, less the hospice
patients.
But really, the rest of it still
applies.
I mean, a lot of hospice patients,
you know, their doctors are like,
you should keep taking all of your
medication until the end.
Man, that's not needed in most
cases.
And so, there just is no sit-down
and education being able to be
done.
Well, if you have no time to
educate caregivers and patients'
families about de-escalation,
then the easiest, most
energy-conserving way of dealing
with the situation is just to say,
keep taking everything.
Yeah.
Which is a shame because, you
know, there's medications out
there that, I mean, now they're
starting to come out with studies
that aren't great.
Like, the statins, they're
starting to show that those may be
leading to things like Alzheimer's
possibly,
other medications that, you know,
these aren't, of course,
FDA-approved studies.
I don't necessarily follow all of
that.
But I'm just, yeah, and I'm just
talking about some things that I'm
seeing around.
Like, none of this is approved by
the American government yet.
But what I'm saying is, like,
these drugs, you know, they're
definitely not doing anything for
you when you're dying.
So, why are we continuing that?
I think that's the important
take-home message, that they're
rethinking things.
Because, you know, some of the
stuff that makes it out, and we've
witnessed even that in our field
of gastroenterology,
all you need is a leak of some
weak association to make the news
wires, and then suddenly drugs
are, you know, viewed as something
to be avoided,
and then everybody's symptoms come
back.
So, you know, it's tricky with all
of the quality of evidence that
pops up on the grid and how it can
sort of change things.
But the notion of de-escalation, I
think, and just sort of resetting
expectations.
And that comes with time, not
rushed, educating a family and a
caregiver to transition to
hospice, as you say.
And that's just a microcosm of, as
you point out, what's happening on
the wards and in the units,
probably at a faster, more
escalated pace with people a lot
sicker who haven't yet changed to
a hospice mentality.
But at the same time, it's not
like there's any more time to have
those discussions about management
and transition home
and what the caregiver needs to
assume in that setting either.
You've said caregiving isn't what
it used to be.
It's a point you've made along
with the idea that aging is
different now.
What's the biggest change in what
families are expected to handle at
home today?
Well, I am almost 42.
And when I was young, like, let's
say 15 and younger,
I would say that the normal kind
of aging process for the elders of
your family,
so your grandparents, were they
lived in their own home until they
slowed way down.
And then they would come live with
their child usually or possibly go
to a nursing home
until they eventually slowed down
enough that they passed away.
It was usually a reasonable death
of, you know, pneumonia kills a
lot of old people
or something like that would take
their life and then grandma and
grandpa are gone.
Now, with all of our amazing
medical advances, which are
amazing, truly,
we are now more focused on keeping
bodies alive than keeping people
living.
And so when a 93-year-old gets an
infection in their leg,
we're chopping the leg off and
then, like,
doing major surgery on people who
are already very, very sick.
Like, if you do an amputation on
somebody who's 90 years old,
let's talk about what that looks
like.
Because if they were independent
up until then, they never will be
again.
I mean, most will never be again.
And now you require a caregiver
24-7.
So where are you going to go?
Are you going to live in a nursing
home?
Do you have the money to do that?
Do you have the funds set up for
long-term care insurance?
Or do you have a big, tatted bank
account that you can go live in a
facility
for as long as now you're going to
be alive with this?
Have you talked to your kids and
you plan on going to your
daughter's house?
Does she understand what that
means?
Like, now we're total care or
something like that.
And I don't necessarily just mean
amputations.
I mean, any big sickness.
What we're doing in medicine now
is keeping people alive to say we
saved them.
But to what end?
What life are we saving?
Because I'll tell you,
a lot of the lives that I see as a
nurse and as a caregiver advocate
and talking to caregivers,
a lot of the caregivers feel like
their loved one would probably be
better off just gone.
Isn't that captured in goals of
care decisions which are
patient-centered and
patient-informed?
Or shouldn't they be?
Definitely should be.
I mean, I worked in the ICU for
years.
And the amount of goals of care
discussions that I saw that were
truly real,
like fully informed consent, were
basically none.
I knew like one doctor who would
really sit down and be like,
listen, you do have an option to
not do this.
And here's what it will look like.
You'll probably be sick for
another six months to a year and
this will probably kill you.
Versus us doing all of these
following treatments and surgeries
and whatnot.
And this is what it might look
like for you.
But goals of care discussions are
severely lacking in the healthcare
industry.
It's very sad, actually.
Because one thing that I talk
about a lot in my videos,
because this is very real.
Mark, how do you want to die?
How do you picture your death?
With dignity.
What does that mean to you?
And a sense of self-respect.
That the way I am in those final
stretches is reflective of who I
am and my wishes.
And that I would agree with the
process and that anyone making the
decision for me
would have had a chance to be
informed and would respect how I
would have liked
to be cared for when maybe I was
no longer able to vocalize any
fine-tuning of that decision.
But dignity.
Dignity is huge.
With dignity.
And peacefully.
And not in pain and not suffering.
Usually those come along with the
dignity thing.
And that is the opposite of most
deaths in America, especially in
the hospitals.
You die a painful death.
You suffer until the very end.
Until they've tried and done every
single thing and your body is a
pincushion and it's swollen.
And I mean, it's so the opposite
of dignity.
And people are not educated of
what these patients want.
So then, so the healthcare
industry is not educated on what
the patient wants because we don't
have the discussions
before they get sick.
So now they're sick, they can't
make their own choices, and we're
left with their child,
their spouse, who of course
doesn't want them to die.
So then, when a doctor comes into
the room and says,
well, do you want us to do this
heart surgery or not?
If you don't do it, she'll die.
100% of the time, they're going to
say, yes, do it.
Unless they have a rare
relationship where they've spoken
about their death and dying
process and what they want.
So, as a society, we need to start
talking about that with our loved
ones much more often.
Like, my husband and I talk about
death and dying all the time.
First of all, because I'm a
hospice nurse, he's an ICU nurse.
But because we want to be very
clear on what we would like to
happen in the event of our death.
Just like you said, you would like
to be properly represented for
what you would want.
Because I don't know many people
who would say,
I hope that in my last months or
weeks or years of life that I'm
confined to a bed,
I have a hole surgically pushed
into my throat.
I can't talk.
I can't eat.
I'm fed through a tube.
And I have to lay in bed for the
rest of whatever time I have left
in a nursing home alone most of
the time.
There's not many people who would
like say that that is how they
would like their last remaining
time on earth to be.
And yet there's hundreds of
thousands of people that are
living like that right now.
You also take on that comparison
between caring for an aging parent
and caring for a baby.
When someone raising a child says,
I know what you're going through,
what are they missing about the
experience of a caregiver caring
for their parent?
I mean, they're missing
everything.
Having a baby.
I mean, I've had both.
I've cared for adults and I have
two kids.
Having a baby is very different.
First of all, they're small.
You can carry them.
You can lift them up.
You can easily turn and rotate
them.
It's a simple thing to change
their diapers.
You can feed them pretty easily.
I mean, it is.
And you're raising them from tiny
to be on their own.
So they gain independence through
your caregiving of them, through
your 18 to 25 years, whatever it
is.
They gain the ability to do more
things for themselves.
Caring for a parent is the exact
opposite.
You have to learn how to maneuver
them.
It's very difficult because
they're a full-grown adult.
Many, many times when someone's
full care, they're totally dead
weight.
So you're having to figure out how
to move around 200 pounds by
yourself or with another loved
one.
That is not the same.
Turning an adult and changing an
adult's urination or bowel
movements is not the same as a
baby's diaper.
And saying that you know what it's
like because you are a parent,
it's so irrelevant.
It's so irrelevant.
Getting back to what you said
before, there's a point you've
made about the caregiver becoming
the person everybody calls when
something goes wrong.
What does living that way do to
someone?
Yeah, I mean, that's living in
chronic stress and with a nervous
system that's always on edge.
And, you know, you're always
waiting for the next shoe to drop,
the next phone call, the next text
to come through, who needs you
now.
You become the person that
everyone calls and wants all the
information from.
And the mental burden of that can
be extremely destructive to your
mental and physical health.
I know a lot of caregivers who are
physically ill themselves because
they have had to take on so many
burdens.
And I would wager saying that it
definitely has to do with stress.
That, you know, living in that
level of chronic stress is very
damaging.
There's one thing about getting
the call when something goes
wrong, but you adopt this mindset
that you might actually think of
yourself as the person who has to
prevent anything that can go
wrong.
And that is next level.
What do you think about that?
Yeah, that's, it's undue pressure.
And you blame yourself when things
go wrong.
You know, mom falls, now it's your
fault all of a sudden.
You put way too much pressure on
yourself for one person to be
managing way too many complicated
things.
And you can see how that spirals
into growing inability to preserve
your own self in that process, let
alone guilt.
And then in the worst case
scenario, shame in the face of
what are odds that are really
stacked against you as the
caregiver trying to manage
everything and keep that pressure
going.
Yeah, for sure.
It can be very destructive.
And then you really lose yourself.
You lose yourself and you lose
almost the ability to be in touch
with reality because, you know,
you've become this go-to person
who has all of this incredible
responsibility placed on your
plate.
And you lose yourself and you lose
yourself and the ability to reason
with yourself and say, it's okay,
it's not my fault.
That, the ability to do that goes
away.
You know, another theme in your
posts that really resonates is
being forced into caregiving
because there's no one else and
there's no backup.
How does someone end up
responsible for everything without
ever being asked or agreeing to
take everything on?
It happens all of the time.
And this is one thing that I'm
working with so many of my
caregivers with is they feel like
they have no choice.
Why?
And they're, right.
Because of money is usually the
biggest problem.
They feel like they don't have the
resources to get their loved one
the help or assistance that they
need.
Nursing homes are incredibly
expensive for, honestly, kind of
crap care.
And so, they don't want to put
them in a nursing home that's
below par because they feel guilty
about that.
And, you know, they don't, they,
they just, I think money is
probably the number one biggest
reason why they feel forced into
it.
Then, of course, there's
manipulating parents or loved ones
who have a lot of things to say
about what they're owed.
You owe me taking care of me.
Well, I raised you.
You need to take care of me.
You need to help me.
But for the most part, I think
that caregivers force, a lot of
them force it upon themselves.
They take it on instead of doing
the difficult thing, which is
having a conversation with the
person who now needs full-time
care.
That is what I'm trying to portray
in my videos and what I work with
when I do my one-on-one with
caregivers is you are just as
important, if not honestly more
important, than the patient is,
whoever your loved one is, whether
it's a parent or spouse or
whatever.
Your needs have to be met also.
It's amazing how the legacy of
family dynamics leads up to that
pivotal point where those
conversations need to occur.
And you can see and you alluded to
how many factors can wipe out the
chances of a caregiver getting a
chance to have that conversation
with whoever they're looking
after.
Because there's a lot pent up
there.
For sure.
And you have to have, these are
very difficult discussions, you
know, to have with your mom, like,
you know, if your mom, one of the
closest people to you, or even if
you're not close to her, now
suddenly needs care, you're going
to feel an obligation.
And most caregivers do not think
in the beginning when this happens
to have a discussion of like,
okay, if this is going to last a
long time, like, it's one thing if
you get pancreatic cancer and you
pass away in a month, okay.
But if it is something like
dementia, that I just had a
hospice patient that has had
dementia for 18 years, and her
husband has been taking care of
her that entire time.
And for them, it's worked out.
But for many caregivers, like, 18
years of being responsible for
another person, that's much of
your life.
You need to have the discussion of
what this looks like long term.
What are your boundaries?
That's the number one thing I talk
about with caregivers in Broken
and Brave.
What are your boundaries?
When is enough enough for you?
Because it's okay that you have
those.
It's okay to say, I don't want to
have to be changing my parents'
diapers.
Okay, there's your boundary.
How do we fix this?
What do we do?
What resources can we use?
What do you have available to you?
The boundaries thing, it's so
tough for caregivers to start
that.
That guilt and shame we talked
about earlier, it's just so
pervasive.
Tiffany, that you're speaking
about an entry point into boundary
setting, something that is
caregiver-centered.
I can't do this.
I can't, perhaps, be responsible
for changing you or for looking
after your body, for example.
And maybe what a caregiver is
really saying is that my
boundaries are that I need to have
some mechanism to preserve my
relationship with you as husband,
wife, child, parent.
There's something about that
relationship that can get eroded
very quickly in caregiving.
What do you think?
Yeah, I think that that is why
these boundaries are so important.
And I think that, you know, it's
talked a lot about within
caregiving of trying to draw
boundaries for yourself and
self-care and how important that
is.
And it is.
But I think that having hard and
fast boundaries to be able to
maintain your relationship is very
important.
I had a really great example of
this as a patient one time.
It was a woman taking care of her
husband who had end-stage heart
failure and senile degeneration.
So he was never fully diagnosed
with dementia, but he had dementia
symptoms.
And she prioritized, she sold many
of their, they had two properties.
So she sold one and put all of the
proceeds in a bank account so that
they could pay caregivers because
she wanted him to stay her
husband, even though he was sick
and needed full care.
And so she would be able to go
into the room.
She did a ton for him, but her
boundaries were she did not want
to have to shower him like a baby.
And she wanted to do as little of
changing him as possible.
She knew it's not possible to
never change him with him living
at home.
And so that was her boundary.
And she made that happen for
herself.
And I understand that financially
not every caregiver is going to be
able to do something like that.
But what we can do is have
discussions on how to maintain
your relationship with the person
so that it doesn't get destroyed
within the caregiver process.
So here's a statement that comes
from your content and really gets
to an important point about this
is the most dangerous assumption
in health care is that family
caregivers actually know how to
provide health care.
Yeah.
I mean, you can see how they can
spill over even into this boundary
issue.
Yep.
Yeah.
They're not educated enough.
This is a huge ongoing problem
because caregivers not being
educated on what to do in any
instance can cause death.
It can cause falls.
It can cause many medical
complications that may not be
there necessarily if they had been
educated fully.
It can cause medication errors.
It can cause worsening of
symptoms.
It's, you know, we just assume
that the caregivers know what
they're doing, or at least I did
for almost all of my career.
I just assumed that they knew what
they were doing.
They'd been doing it for probably
a long time.
Oh, yeah, I'm their primary
caregiver.
Okay, great.
Here's the new med list.
Have a great day.
And, you know, they're, again,
thrust upon this.
And it truly is assumed by health
care workers that they know what
they're doing, and that is
dangerous.
So what are families being
expected to do without anyone
checking whether they know how?
Everything.
They're expected to do full care.
They truly are expected to be like
an educated nurse.
Know what, you know, boundaries
are for, or protocols are for
vital signs.
When do they call somebody for
help?
What are signs that someone's
getting an infection?
What are signs that someone's
declining and possibly needs
hospice care?
What are, you know, signs of, I
think I've never gone over, maybe
not never, maybe a few times in my
career, the true side effects of
medications with caregivers.
Like, hey, their legs may swell on
this, or, hey, their mouth might
get dry on this.
This is what you do to help that.
I just never have time.
There's no time.
So, you know, they're expected to
just, I don't know, Google it.
It's really sad and dangerous.
So what should happen then when a
caregiver says, hey, I've never
been taught how to do this?
Well, in an ideal world, they have
someone that's able to sit down
and teach them physically.
Like, I have had a couple of times
where I've had to prioritize, like
I had a new quadriplegic patient
that his wife was taking him home.
I had to teach her how to move
him.
And so I had to do, like, a
teach-back method.
I showed her, and then I had to
have her do it on her own.
And then I came back the next day
with her, and we continued some
education.
And I know therapy does this a
lot, too.
But that type of thing, being able
to sit down, go through all 20 of
their medications, and say, hey,
these are the high-risk drugs.
Do you understand that Eliquis is
a high-risk drug?
Here is why.
This is what the dangers are with
this drug, but the benefits
outweigh the risks, so we're going
to continue with it.
But watch these things.
In an ideal world, I mean, if
someone's being discharged from
the hospital with a new disease
process or with new medications,
you should be given an hour to sit
with their caregivers if they
require a caregiver to answer all
of their questions,
have an ongoing discussion with
them about the care needed and
about their wishes and all of that
stuff.
It should be a relationship, and
that does not exist in our health
care system.
Does sound like it needs to be a
little more holistic, doesn't it?
Yeah, for sure.
You know, you wrote in a post that
they need caregivers to be unpaid.
You know, I think that it is the
health care system as a whole.
They save like $1.2 trillion a
year on caregivers' work,
basically.
So, in other words, caregivers
save our American health care
system.
So, all of it, the hospitals, the
home care providers, the doctor's
offices, the long-term care
facilities,
the big pharma companies, all of
this, insurance companies,
are saved over a trillion dollars
a year by labor, unpaid labor of
caregivers.
It's a lot.
What do you think they're relying
on the most on caregivers to do
for free?
I think the total physical care is
where the most money would come
from.
It is very, it is a lot to take
care of someone who can't do
anything for themselves.
And what I mean by that is can't
get out of bed on their own,
can't turn their body so that they
don't have sores on them,
can't take their own medications,
can't feed themselves.
These, those things require
full-time health care provider
assistance.
You have to pay two nurses per day
because you're doing 12-hour
shifts
because no one does this for 24
hours.
Oh, except family caregivers,
yeah.
But when you're a health care
provider, you work your 12-hour
shifts,
so you would have to pay two
nurses in one day and two CNAs,
sometimes three if they do
eight-hour shifts.
And so, that right there is
thousands of dollars a week
being saved by caregivers
providing that care at home.
that the health care system and
the insurance companies are not
having to put out.
What proportion of family
caregivers do you think are
working at that level of
intensity?
There's obviously a gradient to
caregiving, but that's pretty high
impact.
But if you consider the most
recent numbers between 63 and 65
million caregivers in America,
family caregivers, what proportion
do you think are working at that
high intensity?
Um, I mean, based on my population
that I see within my caregivers,
I would say we're talking probably
about 20 to 30% are very high
needs.
And maybe like 10% are absolute
100% can do absolutely nothing for
themselves at all.
Um, and those are usually the ones
that are kind of trying to have
the conversations with me of like,
how do I approach the hospice
conversation with my family?
Because they can see that it's
getting that bad.
But I mean, 20 to 30%, I would
say, are fully taking care of
someone full-time, 100%.
Just think about how at-risk
caregivers are for injury because
they've not been taught about the
ergonomics of moving people,
as you alluded to, and, uh, things
like back strain and muscle pulls,
just trying to look after your
loved one, um, other forms of
injuries that can happen just from
not knowing.
Yeah, I, almost all of the
caregivers that I talk to, because
I ask about how they figured out
how to do this,
like, who taught you this?
And like, maybe 5% of people I
talk to were taught, like, you
know, let's say they went to,
their loved one went to a very
prominent stroke hospital.
They usually, for discharges, for
those like major stroke centers,
have very good discharge
procedures where they take several
days and they teach the family
how to provide for someone with
left deficits, etc.
That is a very small minority.
The rest of the people, Google it
or watch on YouTube.
You put your frustration with all
this pretty plainly in another
post of yours.
Bro, corporate American healthcare
is ass.
Which decisions are you talking
about and what do those decisions
leave the caregiver dealing with?
You know, it's all about the
money.
And, um, I've worked for so many
corporate companies that are
disgusting with the amount of
things
that they will not cover or do for
caregivers to help their loved
ones who are, by the way, their
patients,
But it is appalling.
Like, we all need to be so aware
of the things that are not done,
provided, given, shown, explained,
because of saving money.
Like, I worked for an organization
that would deny people things that
they certainly needed
because they didn't want to pay
for it.
Um, things like insulin.
Um, things like insulin.
They, you know, they're wanting to
just try and put people on
different medications because
Sending a nurse to their house to
do daily insulin visits is too
expensive.
Um, I just, it's so disgusting
watching the greed within
healthcare, um, and watching
caregivers suffer
Because, you know, having a nurse
stop by your house every day to
give your loved one that you're
caring for insulin may not sound
like a lot, but it's another set
of eyes on that person.
They're there for 10 to 30
minutes.
They're taking their vital signs.
It is essential for these
caregivers to have a person that
they feel like is backup.
And that is just one example out
of 50 billion that I could
probably come up with that
patients
are being denied things to save
these corporations money, which in
turn hurts the caregivers every
time.
Insulin ain't no frill.
Jeez.
Nope.
And I literally quit a job over
that.
Well, that's a pretty good moral
compass if you ask me.
Congratulate you for that.
Thanks.
There's another statement I'd like
to unpack, uh, carefully.
Um, you mentioned the healthcare
system is keeping people alive
under false pretenses to keep
making money.
What did you personally see that
led you to that?
Well, I've worked in long-term
care and I've worked in the ICU
and it seems to me that instead
instead of having the tough goals
of care discussions and
being very honest about what life
will look like if we continue to
do these aggressive
treatments, instead of doing that,
uh, the system basically brushes
that under the rug
and continues to do all of these
treatments under the guise of
saving a life.
Do you think it's because of fear
of post hoc, you know, litiginous
gestures and things like
that if things aren't done and
things take on a natural course
and then suddenly someone
lawyers up and then the
corporations, like, there's got to
be some safe place to navigate
where natural history can evolve
if agreed on where there are no
repercussions for the natural
history of disease.
Yet, I could see where the
corporations might just choose to
do everything because it avoids
the legal aftermath when things
don't go smoothly or someone
suddenly realizes, oh, this isn't
exactly how I thought this was
going to play out.
I'm going to lawyer up and, uh,
then the corporation gets pulled
into that.
Like, where's the safe space to
navigate this discussion so that
dignity prevails and there's
a balance between corporate push,
corporate fear, and, but most
importantly, a focus on
patient-centered
care?
I mean, I think everywhere should
be that safe space.
I think whether it's in a hospital
or your home or a doctor's office
or a nursing home or
wherever we are, providers need to
feel safe enough to have real
conversations with people.
So, when I worked in the ICU, I
had hundreds of patients and their
families, usually their
families, crying, thanking me for
telling them the truth because
something, like, take, for
example, a tracheostomy.
So, normally a tracheostomy, which
is that hole I was talking about
being cut in your throat
with a tube that's pushed down in
there and then you're put on life
support.
Now, sometimes that can be
reversed, not in a lot of
instances, but sometimes it can
be.
And sometimes you can even learn
to eat with one.
Like, I understand that those
cases exist.
That is not the majority.
It's not the majority.
Most people who get a tracheostomy
are kind of that more example of
what I talked about before,
which is like laying in bed in a
nursing home attached to a
ventilator.
And so, being honest about their
loved one's actual disease process
and what this is going
to likely look like for them,
while also being honest, and I
will literally say part of my
little spiel is, listen, I am not
God and I am not Mother Earth and
I do not control people's
lives, but I can tell you that in
my experience, this is what this
is going to look like.
And I've had families like, give
me flowers and cards.
You're the only person who's ever
been honest.
You're the only person who ever
told us the truth of what really
was going on or what this
really looked like.
And that is a shame.
And there, everywhere in
healthcare should be a safe place
to have these goals of care
discussions, honestly.
Tiffany, I'm going to ask you a
difficult question.
Has management sent you flowers
for that achievement you had at
the bedside?
No.
In fact, I'm usually told not to
have those discussions with
people.
So what should families ask then
so they understand what yet
another treatment can
realistically achieve for the
person they love?
I think asking what long-term life
will likely look like is one of
the best questions to ask.
So if my 93-year-old mother gets
this amputation, what does that
mean?
And then you need to know as the
caregiver, do you even think she
has the motivation to survive
that?
Because something like an
amputation is no small feat.
You have to be very highly
motivated.
You have to be wanting to get
stronger, et cetera, et cetera.
And so I think caregivers asking,
you know, what is life going to
look like after we do this?
And for how long?
And what are the chances that we
have a complication or a problem
or something along those lines?
And just so our listeners are
clear, that's not a conversation
reserved for when you're over 90.
It could be in your 80s, your 70s,
or even your 60s in the face of
chronic degenerative disease,
as unfortunate it is as it is to
happen so early.
But that's an honest conversation
and an honest question that could
be asked at any time.
Yes, yes.
And, you know, being in hospice,
it is nice because I see the other
side of this a lot more often now.
Where in the ICU, you see, like,
push, keep going, keep doing
everything, no matter what.
Life at all costs, 100% of the
time, pretty much.
With hospice, I mean, you know, I
recently this year had a patient
and she was diagnosed with cancer.
And she tried one time of chemo.
She's like, I'll try it.
Let me see what it does.
And it made her absolutely
miserable.
And she was like, I am never doing
that again.
I don't care if I die in three
months from this cancer.
I would rather die tomorrow, never
having done that again,
than suffer through longer
treatments for truly an unknown
ending.
And, you know, having those
conversations, she had talked with
her husband about this
multiple times over and over about
what she was willing to endure and
what she was not willing to
endure.
And as soon as she was like, I am
not doing that again, he never
questioned it again.
Even doctors trying to push her
into treatments, like, this is a
simple thing.
You just have to do these
treatments.
And you'll, you have a 60% chance
of getting better.
She's like, nope.
And then when she was not able to
make her own decisions, he said,
nope.
And she died a very peaceful,
sweet death surrounded by all of
her family.
And that is ideal.
And these conversations are not
being had.
We've had Les Harp on the show
previously, and he's a hospice
nurse, and he's been through a
lot.
And he really emphasized that
these conversations about hospice
just don't happen early enough in
the patient's journey.
Do you find, as a hospice nurse,
you see that as well?
Absolutely.
Yeah.
For sure.
I mean, I've had a, one story I'll
never forget.
It's a pretty quick one.
I went to a patient's house to
admit them to home care, actually,
several years ago.
And, which means he was getting
therapy to get better.
And he was a cancer patient.
And he was getting chemo in the
big city, an hour and a half away.
And he got home on a Friday.
I met them at the house to get
them admitted so that we could
start care right away on Monday
morning.
And he was dying when I got to the
house.
Like, actively dying, Kuzma
breathing, pretty much
unconscious.
He was coming in and out of it.
So, when I walked in, I was like,
what are we doing here?
And the wife was like, oh, we go
back for another session of chemo
on Tuesday.
And I was like, what?
He's not going to be alive on
Tuesday.
And she was like, what?
Like, she had no idea.
And they just came from the
oncology office.
And I went over to him.
And I tried to wake him up a
little bit.
And he woke up.
And he heard me talking to his
wife.
And he was like, I'm going to die?
And I said, yeah, I think you're
going to die in the next couple of
days.
And he just started sobbing.
And he was like, I've been telling
my doctors that I was going to
die.
And they kept telling me I wasn't.
And I told them today that I felt
like I was dying.
And they said, we'll see you on
Tuesday.
So, his kids live in different
states.
They didn't make it on time.
And he died Saturday evening.
He died a day later.
And he was robbed that, in my
opinion, by the healthcare
industry.
I mean, someone should have been
more honest with them.
Maybe the family could have
visited in the weeks or months
earlier more frequently to
consolidate their family
experience.
Yeah, and having those
conversations earlier is so
important.
Just for our listeners, because
small breathing is sort of a
labored sort of end-stage
respiratory or breathing pattern
that you can observe at the
bedside in a patient.
And astutely, Tiffany saw that,
and it sort of changed the
conversation.
But that's a pretty powerful
story.
Yeah, that was many years ago.
That was probably like eight years
ago.
That is when I started really
paying attention to what exactly
was going on within the healthcare
system.
Why was a dying man sent home to
have further treatments and
rehabilitation when there is no
way that he had no signs of
imminence of death at that chemo
visit that day?
It's impossible.
And that he hadn't been showing
signs that he was declining and
likely to die soon for, like you
said, months leading up to that.
Why are we not having those
discussions?
And is that lying?
Is that like malicious lying?
Or is it just lying by omission?
Or is it not wanting to get sued?
I don't know what it is.
I truly don't.
I don't know why these honest
conversations are not happening
more.
But that would be great to know.
Well, maybe they need to be sought
out also, right?
A lot of patients and families
don't want to ask those hard
questions to get the update
because maybe it's something
they're not ready to process.
But I would argue that I'm sure
given the choice, most patients
would love the honest update to
know where they stand.
There are definitely some families
and patients who don't want to
hear it, ever.
They never want to talk about
anything negative.
They never want to talk about the
end coming near.
They never want to talk about the
difficult discussions.
For sure, that happens.
I can recognize that right away.
And then I just accept that.
And that is your prerogative.
You don't...
We don't have to have that
conversation.
That's fine.
If that's what you want and you
don't want to talk about that,
that's fine.
But most people, when you start to
have those honest talks with them,
are flooded with emotions because
the truth is they know.
They know.
They can feel it either within
their own body because they're a
patient or they can tell because
they've been in that loved one's
life for a long time.
They pretty much know when it's
happening.
And to hear it out loud is very
validating.
In a post about hospitals and care
facilities, you really powerfully
urged families not to leave their
loved ones without checking in on
them for too long.
What have you seen that makes you
tell caregivers to check in every
day?
Yeah, I mean, if at all possible,
every day.
That is ideal.
I have seen a lot.
You can tell the patients in a
nursing home whose family don't
visit them versus families who do.
First of all, their rooms are
usually...
The ones who get visitors are...
The rooms are cleaner.
They're more organized.
Their laundry is done better.
Their clothes are not lost as
often.
Still happens, but not as often.
The person's clothing that they're
wearing is cleaner.
So if they make a mess on
themselves in breakfast, it's
changed out.
Whereas someone who does not get
guests or visitors, you know, they
have their breakfast still on
their shirt at 9 p.m.
I have literally seen like pieces
of pancake on people's chests from
7 a.m.
Their laundry is in other people's
rooms.
Their rooms are more dingy.
Their curtains are not opened.
And they are just left alone so
much.
You know, even if they're not in
their room, they're left alone in
a hallway or left alone in the
front lobby just sitting there.
And so you can tell the patients
who have visitors because the
staff know.
And so they want to make sure that
the people who have people
checking in on them are
well-groomed and
well-taken-care-of because they're
held more accountable.
And you don't have time as a
nursing home nurse or CNA to do
that for every single patient.
So you prioritize the ones who
have visitors because you have to.
Well, we've heard about nursing
ratios previously, and that
certainly raised a stir.
And you're right, especially if
you're doing all kind of
administrative task work for
billing and you know who you need
to prioritize and to make your
life.
I mean, it's almost like a pretty
natural human tendency to react
that way in the face of
insurmountable responsibilities.
I mean, it's almost setting the
stage for failure, isn't it?
It 100% is.
And, you know, there's so much
disgust surrounding nursing homes
and how terrible the care is.
And I did see, I don't remember
her name, but that one nurse that
you had on the podcast that works
long-term care talking about this
type of thing.
And her interview with you was
very fascinating to me because
exactly what she said.
I mean, you have to pick and
choose what you do because you're
not staffed to the ability to be
able to provide that excellent
level of care to everyone.
That's, it's, and then the problem
is that the nurses and CNAs are
blamed for it.
Families come in and they're like,
oh my gosh, pancake on someone's
shirt at 9 p.m.
Like, give me a break.
That's so disgusting.
That's, you're not giving them
dignity.
What am I supposed to do?
That episode of Crystal Morin
really hit home.
And I mean, we're hearing from
nurses who are pulling their hair
out saying that this is, this is
unacceptable.
I can't do my job as a nurse.
I can't fulfill my
responsibilities.
I function under layers of
expectations that take me away
from the bedside.
And I don't understand.
I've been doing this for a year
now.
And the more stories that I hear,
the question that comes to mind is
in the collective,
how are we saying, or are we
saying, are we just not choosing
to opine, but is this okay?
And do we accept it as a society?
And those are the thoughts that I
sort of quietly wonder, because I
hear your voice, I hear Crystal's
voice, I hear many opinions, and
there's a growing awareness that
something needs to change
for the better, not for a
revolution, but just for the
better of us all.
And maybe that includes, you know,
a shift from toxic individualism
and a return to family
and everybody chipping in.
How many comments we've had is
that we've tried to have those
conversations to establish a
family
plan with respect to boundaries.
And no one listened to me.
I championed the conversation and
I was still left alone to be the
caregiver.
And it's kind of like, as someone
who's advocating and trying to get
these conversations
going, you almost feel your tail
between your legs saying like,
geez, how do you overcome
that pattern?
But it's also been entrenched by a
generation of a different
awareness compared to how we
used to look after and care give.
Yeah.
And I think that we need to really
remember within that piece of the
conversation how different
medicine is now.
And that, you know, this toxic
individualism that you talk about
is important to talk about.
But people are kept alive for so
long with very critical, very
acute illnesses that just didn't
exist 30, even 30 years ago.
I mean, you just didn't have
people living at home on life
support or very, very rarely.
And usually that was like a
chronically sick baby or something
like that.
But, and I mean, we, we need to
talk about what the medical system
is doing to our elderly
people.
And, you know, these interventions
that just continuously get shoved,
especially as the boomer
generation ages, because I'm
telling you what you think it's
rough out there now.
Wait five more years.
It's going to be bad, bad.
There's nowhere near enough jobs
for healthcare practitioners that
take good care of people
and don't have that corporate
healthcare is ass mindset of money
over bodies and, or money
over lives, I mean, that, you
know, there, I don't even know
what it's going to look like.
I'm waiting with bated breath to
see what happens with the
healthcare system here.
That in mind, I think one of your
lines out there, that's pretty
blunt.
Caregiving can kill you.
What have you seen happen to
caregivers that makes you put it
that way?
I mean, they have increased risk
for chronic illnesses, such as
things like hypertension.
They get autoimmune disorders.
They get very high levels of
depression and anxiety.
And these are things that,
especially over time, can
literally kill you or can get
close to killing
you.
I've seen caregivers get so sick
just from living under chronic
stress for so long that they
end up hospitalized with, you
know, double pneumonia or whatever
their illness is.
I mean, kidney failure, liver, you
name it, people start to get it
when they live under
that type of chronic stress.
And I don't think that it's talked
enough about in the healthcare
world and the caregiving world
of how, like, actually physically
dangerous it can be to live under
that kind of stress.
So that's why I wrote that post,
because the facts on it are really
crazy.
And it's garnering awareness.
You know, Mel Robbins had an
episode on the caregiver syndrome.
Now, we can all appreciate that we
take on some weight as a caregiver
and it is a responsibility
and things do stack up.
But where do you cross that line?
And when you talk about caregiver
syndrome, what do you mean?
And what are the big warning signs
that there needs to be an
intervention for the caregiver?
I think the biggest, the most
obvious one that I see is people
being very isolated and their
quality of life declining.
And so what I mean by that is they
used to go bowling every Friday.
They never go bowling anymore.
They used to go to the gym four
times a week.
They never go to the gym anymore.
They used to have lots of friends
and go out a few times a month.
They never do that anymore.
Losing yourself to caregiving is
what caregiver syndrome basically
is.
I mean, there's some clinical
things that, you know, like
feeling more depressed, more sad,
losing interest, that type of
stuff.
But I think the general public,
when thinking about caregiver
syndrome, needs to think about
losing yourself.
It's almost kind of like being in
an abusive relationship.
Like you stop doing the things
that you love just for
self-preservation and to survive.
And I think that that happens so
often with caregivers that they
don't even know that it's
happening.
And I will say, I just had, during
one of our support groups, I
asked, because, you know,
this person, this caregiver was
showing signs of caregiver
syndrome.
And I said, what did you used to
do before you took care of your
dad?
Like, what was your life like?
And one of the main things for her
was going to the gym.
And she would go to the gym four
times a week.
And she was very into it.
And that really helped her
mentally and physically.
And she hadn't been in seven
months.
And so, you know, even doing
something like starting to work
out at home, even though that's
not the same, it can get you to
the point where you can figure out
how to take that piece of
you back.
But caregiver syndrome is, it is a
dangerous road down losing
yourself into very severe
depression,
autoimmune disorders, or other
health issues that you may never
recover from.
This, you know, segues pretty
nicely with this week's episode on
the podcast that was just
released and that I think the
antidote to caregiver syndrome is
not self-care, but
self-preservation.
Yep.
A hundred percent.
I think the self-care talk in
caregiving is so fake.
Like, I don't even talk about
self-care.
I tell people that it's important
to take care of yourself because
sometimes you need to be
reminded of that when you are only
and ever.
It's just like being a parent to a
newborn.
In this instance, you can compare
those two.
You lose yourself when you have a
brand new baby who needs you every
hour on the hour, pretty
much.
When you're a caregiver to a loved
one, they need you constantly,
always, and you lose yourself.
And preserving your life, your
quality of life, that is
self-care.
Not getting a massage.
And so, remembering who you were
before you were pushed into this
role or before you took
this role on is very important.
And I think that many, many
caregivers lose sight of that.
It's easy to do.
I think it's about just creating,
perhaps it's an adapted zone, but
a safe zone nevertheless
to restore or maintain some of
those elements in real time as
your caregiving journey moves
forward.
But that's kind of not really
spoken about.
It seems to be sort of hidden
until you reach that crisis point
where you're like, oh my God,
who am I?
I'm invisible.
My identity's gone.
But maybe that sort of strategy
needs to be nurtured early on.
And, you know, what did life
should come with, how am I going
to prepare for caregiving?
Because maybe, or more likely, I
will be a caregiver at some point
to the person I love
or to people I've loved who raised
me.
It doesn't matter.
But maybe I at least need to be
aware of what can happen and what
I need to ask myself early.
That brings me to another point
that you raise in your videos.
And you've said that no caregiver
should be expected to totally
sacrifice everything.
So what do you say to the adult
child being told to just shut up
and sacrifice because they
owe their parents care?
Yo, I, that is my biggest pet
peeve.
I have been called a Kevorkian,
multiple names, like I could go on
online when I put videos out
like this.
The general consensus is that you
owe, especially your parents, your
entire life to care for them.
And this is something I will, this
is a cross I will die on.
That is not true.
If you choose to, if you have the
discussion, like dementia runs in
my family, I've spoken
with my mom.
What happens if you have dementia?
I will take care of you.
This is what I'm willing to do.
When it gets to this point, I'm
not going to do that anymore for
you.
And having those discussions is
very, very important early on with
your loved ones, right?
It's, it's tricky if you haven't
had a safe space to have those
conversations to begin with.
And that speaks to, once again,
decades of family dynamics that
have shaped and even maybe
pre-selected who it is in the
family is going to be the
caregiver.
But I agree with you.
Yeah, they're never, they're never
comfortable.
You know, it's just like talking
about dying.
It's not a comfortable situation
for most folks to talk about.
We don't want to think about the
worst case happening.
We, we don't want to think about
what happens if I need care or
what happens if I become a
carer.
Am I willing to do that?
You know, I mean, sacrificing your
whole life for someone else must
be voluntary.
You must be okay with it, want to
do it, know that that's what
you're signing up for.
It has to be voluntary.
If it's not, you're 100% chance
going to be in severe caregiver
syndrome, have probably some
type of chronic illness going on
of your own self and have, and
basically your life can truly
be ruined.
I've had many caregivers tell me
that caregiving ruined their life.
And that's the difference between
owing somebody and feeling
obligated no matter what to
sacrifice
your whole life.
I mean, caregivers give up their
jobs.
They give up promotions.
They give up their relationships.
Their marriages suffer, their
relationship with their children
suffer, their relationship
with the parent.
I mean, they literally, they, they
end up having to quit their jobs
that they've been at for,
you know, whatever, 20 years.
Their whole career is down the
tubes because now they have to,
that is literally sacrificing
everything you've worked towards
your whole entire life.
And the narrative that you owe
your parents or a loved one that,
sacrificing your whole life,
that is the most asinine narrative
I've ever heard.
There are so many people that
thrust that and push that on
caregivers though.
It's super sad.
Well, I think raising, raising a
child is not sacrificing and
giving everything of you
the way it comes to be when the
burden of caregiving goes sky
high.
I mean, we all remember being
kids.
Mom and dad went out, we had a
babysitter and they restored part
of themselves in that activity.
Yes.
Or built on their own
relationship.
I guess, had they never done that
because care of the young child
was all that counted
and they were never, they took
upon themselves to never take a
break because of such dedication.
I haven't met anybody I've heard
whose parents did that.
No.
And if they did, I would, I would
wager saying that that's not
healthy.
You know, that's not a healthy way
to raise children, to make them
your whole entire world
and have absolutely no identity of
your own.
But how often does that happen in
family caregiving?
A lot.
Very interesting.
You have a message that you have
specifically for the brothers and
sisters out there.
And you've said, if you're the
sibling of the primary caregiver
to your elder parents,
you'd better be nice to them.
Yeah.
Why did you make that video?
Well, if I recall, that's the one
where I'm in my pool.
And I was thinking about the fact
that sibling interactions within
caregiving are so wild.
It's so crazy the things that some
siblings who are not the primary
caregiver will say to the
person who is caring for their
loved one.
They have all of these unrealistic
expectations.
They, you know, have all of these,
they have everything to say and
then don't do anything.
And, you know, I've seen
caregivers feel like their entire
life with their family,
like their internal family with
their siblings is destroyed with
caregiving because they're so
mean.
They're just literally mean.
I don't know how else to say,
yeah, they just become mean to
them.
And it's like the very least you
can do if someone is caring full
time for your parents
and you're their sibling is be
nice.
Like, I'm not saying you have to
100% agree with everything.
I'm not saying that what they're
doing is what you would do.
But the fact is you're not doing
it.
So at least be kind and
understanding of like,
maybe I don't really know what's
going on in that house anymore.
And if you do, and it really is
that big of a problem,
then maybe you should do something
about it instead of just being
mean and abusive.
And maybe be present to the degree
that your capacity allows you.
But maybe have the caregiver
partake in helping assign maybe
some things that best suit you.
But not other things, but the
things that are a good fit for you
so you can help contribute.
So beyond being nice, what should
those siblings actually be taking
responsibility for?
Well, I think that it's important
for the primary caregivers to be
able to open and honestly talk
about what's going on.
I think that they need to say
exactly what they need from their
sibling.
Hey, I need you to pitch in
money-wise.
How much can you pitch in towards
food for mom?
Because I mean, food is expensive.
So all of these things add up.
Hey, I have a doctor's appointment
on Friday at 10.
Is there any way that you can sit
with mom for two hours while I go
do that?
Or hey, I want to go out to dinner
with my husband.
What day of this month can you
come and sit with mom so that I
can do that?
And using specific examples,
because what I see happen a lot is
caregivers don't really want to
ask for help because it feels kind
of yucky.
And so they just say, well, they
didn't offer anything.
Well, they don't know what to
offer sometimes.
Like, that's a genuine thing.
That doesn't mean that they're
being horrible.
It's just that they don't really
know what to say.
They don't know what to do.
So if you give them a thing to do,
like, hey, I need this from you.
Most of the time, at least a lot
of the time in my experience, it
gets done and they step in and can
do that.
Are there next level strategies
you advise people you work with
when that initial conversation
hits a brick wall?
Yeah.
Like, what do you mean how to, how
to...
Well, I've seen, we've had
comments to our various posts and
like, I tried all that.
It didn't work.
They're still doing nothing.
Yeah, there's going to be people
who do nothing.
And you have to have the
discussion in a respectful manner.
You have to make your needs clear.
And if they're not willing or
able, either one, it doesn't
really matter, to meet your needs,
then you need to move on.
Like, holding on to resentment
about someone not doing what you
need or about someone not helping
you as a caregiver is killing you
more than it's doing any damage to
anybody else.
Like, it's like, you know, it's
like, you know, the whole poison
thing that we talk about, giving,
taking poison yourself and
expecting the other person to die.
Holding on to years of resentment
and build up because your brother
won't help you with your mom.
It's making your own life harder
and worse.
And I've talked many caregivers
through this because, man, is it
easy to get in that cycle and trap
of constantly blaming others for
the fact that you don't have help
or you don't have this or this
isn't happening for you.
And they just get to go live their
life.
And yeah, what are we going to do
about that?
Because just sitting there on your
couch ruminating over the fact
that your brother isn't helping
you is not getting you more help
and it's not changing your
brother's life any.
So what do we do?
I mean, I've recommended therapy
to some siblings because sometimes
having, I'm not a therapist, so
having like a skilled, educated,
third-party person that can sit in
between the two of you and help
the discussion can be very, very
helpful.
And other times, you just need to
know when enough is enough.
And you've asked, you've made it
clear, and there's, what else are
you going to do?
You have to move on.
Well, maybe caregivers need to
greet themselves with a little bit
of self-directed grace and
acknowledging,
I asked, I did the right thing by
asking, it was with good
intention, but I got let down.
It's time to let that go.
Yep, exactly.
Maybe at the same time, the
trade-off is, well, there'll be
less attention to other people's
opinions about the caregiver's
role because it's really been now
left to them to define.
Oh, sure.
If you've called for survival
strategies and survival plans for
caregivers rather than just more
talk about self-care,
what does a survival plan need to
change about the caregiver's
actual day?
I think that a survival plan
should be focused on how to thrive
and live while being a caregiver.
Because I have seen both very
extremes of the caregiver
spectrum.
I've seen people who are literally
dying, have severe caregiver
syndrome, nothing is good in their
life, 100%, you know, 100% of
things that happen are negative,
horrible, bad.
They're in this very low space,
and then I have the opposite where
they're thriving and doing well.
And the ones who are thriving and
doing well are the ones that have
that survival plan,
which equals simple things like I
have a video on making sure that
you get your hot coffee in the
morning.
Survival plans don't have to be
big, giant things, huge changes
that we're making.
They have to be how you—they have
to be things that help you gain
your sense of self back again.
If something that you loved before
you care gave was your hot coffee
in the morning, how do you
prioritize doing that?
And you have to take
responsibility here for yourself
and not just hope some—
Oh, I hope someone can come and
help me so that I can have my hot
coffee.
No, I'm going to have my hot
coffee in the morning, at least
most mornings.
How do I do this?
And you're going to have to figure
out within your own individual day
and life how to do something like
that.
But the survival plans, I mean,
it's such a wide spectrum of what
that looks like for people.
It depends on where they're at
with the caregiving journey.
But simple, small things like that
are much more important than going
and getting a massage, you know,
because those help you keep your
life every day.
So what I'm hearing from you is
survival mode is not a survival
plan.
Sure isn't.
Not for the long term at all.
Tiffany, a question we ask many of
our guests is, is death the only
escape from the overwhelm?
No, I don't think it is.
I think that you can live and
thrive as a caregiver.
You just have to be self-aware and
you have to be willing to draw
hard boundaries and figure out how
to make things work.
And then if you get kind of stuck
in a position that you are not,
that is not ideal for you, that
does kind of trounce over your
boundaries and you're not
necessarily comfortable with it,
but it is what it is and you
literally have no choice, whether
it's because of finances or
anything else.
I think that you can still figure
out a way to have a good life.
I really do.
And I have been around this for a
long, long time.
And I think that there is a level
of making a choice for yourself,
of choosing to make yourself
thrive through something difficult
rather than succumbing to
constantly being a victim and
having things happen to you all
the time.
Big challenge if you choose to
ultimately navigate it all on your
own, but what I'm hearing there is
the calling for help and the
calling for community and little
gestures add up and space is then
created for preservation.
Not to mention community and a
little bit of refreshed
connection, but without asking for
the help and having that vision of
I'm only doing this myself, I'm
not letting anyone into this space
because I am the caregiver.
I can see that really backfiring.
Yeah, I think that causes way more
harm than good.
And you have to be willing to get
out of that mindset.
And I work with caregivers a lot
on that because, you know, it's
almost easier to feel a victim of
your circumstances and not really
take full responsibility for
what's going on.
Because, again, in a lot of times
you are thrust into this position,
you didn't necessarily plan on it,
you don't really necessarily want
to be here, but here you are.
So it's very easy to be like,
well, I had to be like, well, I
had to do this because I'm the
only one and kind of yada yada
about this, constantly always
obsessing about this.
There has to be a conscious switch
in your mindset from all this is
happening to me to how can I live
my own life still through this.
And the number one way to do that
is community.
And whether that's friends,
support groups, family, whatever
that looks like for you.
There's all the resources of the
ARP and the states and, you know,
Centers for Caregiving Excellence
in Canada and state and provincial
resources.
So look for them and embrace them.
They are there.
And I think people are willing to
help if asked.
I think so.
And, you know, I've had a lot of
caregivers that are not taking
some of these assistances or help
from these companies because it's
not worth it.
It's only three hours a week.
Okay, it's three hours a week.
Like, I know that that sounds like
nothing when there's, what, like
164 or something hours in a week
and three hours sounds stupid.
But that is three hours, even if
that means you get to go sit on
your front stoop in the sunshine.
Like, you know, for me, being
outside and in the sun is very
important.
If I felt like I was stuck in the
house constantly, even just one
hour in the sunshine could change
the trajectory of your day.
So being willing to take what
you're given is also a thing, too.
I mean, I've had to talk people
into that many times.
Like, well, the state only offers
four hours of care.
That's ridiculous.
Why would I even bother?
Because it's four hours of care.
That's why.
There's a part of caregiving you
talk about that I don't want us to
miss today.
It's what happens after it ends.
And you use the phrase
post-caregiver syndrome.
Why can someone still be
struggling when the care is ended
and everyone else assumes the hard
part's over?
I think this comes back to
identity.
I think this comes back to
identity.
When you become a caregiver and
that is all that you are and that
has become your entire identity,
you don't remember yourself.
You don't know what kind of movies
you like.
You don't remember what kind of
food that you used to cook or that
you used to go out to eat.
You lose yourself because you've
been caring for this person for so
long.
And so, that is what I hear the
most from people with the
post-caregiving is that they don't
know who they are anymore.
And they use that phrase all the
time.
I don't even know who I am anymore
now that they're gone.
And I mean, if you've been taking
care of someone with dementia for
18 years and they die, like,
literally, who are you?
You can just leave the house and
go do whatever you want.
You can just go on a road trip.
You can, like, these things did
not happen for a huge portion of
your life.
And so, regaining your identity
after that, that is definitely the
portion of post-caregiving that is
the hardest to come back to.
You have to relearn yourself.
I almost see a post-caregiving
coach as being a really good
relationship to have in that it's
not going to happen overnight.
You need to rekindle little steps.
I want to finish today with a
statement of yours.
That's caregivers deserve more
than survival.
Tiffany, what do caregivers
deserve?
Caregivers deserve to thrive and
to be happy and to maintain their
relationship with their loved one
beyond just being a caregiver.
And unfortunately, or fortunately,
they have a lot of control over
that.
And knowing that you deserve those
things is very important to keep
in mind because you should work
towards making that happen for
yourself.
But, you know, having your own
life while caring for someone can
happen.
There's ways to make that happen.
Tiffany, I'd like to thank you for
your honesty and your authenticity
and for your willingness to have
difficult conversations.
Be a voice in a voice in a
situation that we're all going
through and experiencing and
witnessing.
It doesn't matter where you live
and what country.
But a situation is difficult and
it takes courage to do so.
Well, thank you.
I think the message I'm going to
take and end the show with today
is it's not just four hours.
It's four hours.
Yeah.
That wraps up this week's episode
of the Caregivers Podcast.
I'm your host, Dr.
Mark Ropolesky.
So happy you joined us today and
we'll see you again next time.
Tiffany, thank you.
I really enjoyed getting into the
stories behind some of your most
viral TikToks.
We tried something totally
different today, so let us know
what you thought of this format.
Please subscribe or follow the
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Thank you for listening and we'll
see you again next time.
Before we wrap up, I wanted to
remind you of something important.
The conversations you hear on this
podcast are here to inform, to
support, to spark reflection.
We're not a substitute for
professional medical advice, care,
therapy, or crisis services.
Listening to this podcast does not
create a doctor-patient or
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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
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The views you hear on this show,
whether from me or my guests, are
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They don't necessarily reflect any
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part of, or have worked with, or
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This podcast is an independent
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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.