How To Advocate For A Loved One When Healthcare Gets Complicated-Interview with Tiffany Auvil

Welcome And Why This Podcast Exists

SPEAKER_00
0:10

Welcome
to
Patty's
Place,
a
place
where
we'll
talk
about
grief,
dementia,
and
caregiving.
I'm
your
host,
Lisa.
I
started
this
podcast
in
honor
of
my
mom
who
passed
away
from
dementia
almost
three
years
ago.
So
I
want
this
to
be
a
place
where
you
know
you're
not
alone
and
we
can
have
those
difficult
conversations.
So
please
grab
yourself
a
cup
of
coffee,
a
cup
of
tea,
or
if
you're
having
a
really
bad
day,
get
a
glass
of
wine
and
come
join
us
today.
So
today
I'm
really
excited.
Our
guest
is
Tiffany
Avil.
Hopefully
I
said
that
right.
She
is
a
registered
nurse,
a
functional
medical
health
coach
and
caregiver
coach.
And
she's
got
more
than
20
years
experience
in
healthcare,
which
also
includes
senior
leadership.
And
she
is
currently
completing
her
doctorate
of
science
in
integrative
healthcare,
and
she's
the
author
of
the
No
BS
Guide
to
Caregiving.
So
welcome,
Tiffany.

SPEAKER_04
0:58

Thank
you.
I
am
happy
to
be
here.

SPEAKER_00
1:00

Yes,
I'm
excited
because
you
have
a
very
interesting
story
to
talk

From Nurse To Cancer Caregiver

SPEAKER_00
1:05

about
with
it.
So
let's
see.
So
you
spent
20
years
inside
the
healthcare
system,
right?
And
then
you
became
a
caregiver
for
your
husband.
So
how
did
that
come
about?

SPEAKER_04
1:17

So
my
husband
was
originally
diagnosed
with
um
renal
cell
cancer
when
he
was
39
back
in
2016.

SPEAKER_02
1:24

Oh
wow.

SPEAKER_04
1:25

And
um
we
were
very
fortunate
at
the
time.
Uh
he
had
a
large
tumor
on
his
left
kidney,
and
it
hadn't
spread
past
his
kidney.
So
all
they
did
was
remove
his
kidney,
which
they
even
did
with
a
robotic
surgery.
So
he
was
discharged
the
next
day
and
was
off
work
for
three
months
and
considered
cured,
had
follow-up
scans,
everything
was
good.
And
then
um
seven
years
later,
he
had
some
uh
vision
issues,
and
that
led
to
us
eventually
scanning
his
um
chest
and
abdomen,
and
we
found
that
the
renal
cell
cancer
was
back
in
his
pancreas
and
his
liver.
Okay,
and
that
was
in
January
of
23.

SPEAKER_00
2:09

Okay.
My
uh
my
grandma
and
a
very
close
family
friend
both
had
pancreatic
cancer.
That
that's
a
whole
beast
right
there.

SPEAKER_04
2:17

It's
a
whole
his
aunt
actually
passed
away
in
2013
with
pancreatic
cancer.
Um,
so
when
it
first
showed
up
in
the
pancreas,
we
were
thinking
it
could
be
pancreatic
cancer.
Um,
but
he
had
some
procedures
and
they
found
that
it
wasn't.
It
was
the
renal
cell
cancer
had
reoccurred
and
had
metastasized
to
the
liver
and
the
pancreas.

SPEAKER_00
2:37

Wow.
So
so
what
did
being
on
the
other
side
of
the
bed
teach
you?
That
two
decades
of
nursing
didn't.

SPEAKER_04
2:46

Um,
and
so
I've
always
felt
like
I've
been
a
compassionate
nurse.
Um,
and
I've
spent
the
majority
of
my
career
in
ambulatory
clinics.
So
I
was
in
like
the
bedside
when
you
say
like
in
a
hospital
setting.
I
was
there
for
the
first
three
years
as
an
LPN.
So
that
would
have
been
like
from
25
to
28.
And
then
I
went
to
um
a
clinic
and
I
spent
different
specialties,
um,
but
mainly
in
family
practice.
And
I
had
over
the
years
done
all
the
things.
I've
done
prior
authorizations,
I've
done,
I
learned
how
to
do
coding,
I
learned
about
the
billing
side,
um,
especially
as
I
moved
up
between
um
manager
and
system
director.
I
really
like
to
get
into
the
weeds
of
things
because
I
don't,
I've
never
been
one
to
just
say
that's
that
department's
job.
You
know,
I
need
to
understand
it
because
I
feel
like
understanding
it
helps
me
be
a
better
leader.
And
we
were
really
fortunate
that
I
had
that
experience
because
there
were
a
lot
of
times
that
my
husband,
I
feel
like
he
was
saved
or
he
had
um
essentially,
I
probably
would
have
lost
him
a
lot
sooner
had
I
not
known
what
I
knew.
Um,
and
one
of
the
things
that
I
always
kind
of
tell

The Prior Authorization That Almost Canceled Treatment

SPEAKER_04
4:05

people
to
kind
of
help
them
wrap
their
minds
around
what
I'm
saying
is
um
I
used
to
do
prior
authorizations
way
back
in
the
day.
And
the
night
before
my
husband's
first
immunotherapy
appointment,
the
nurse
from
the
oncology
office
called
me
and
told
me
that
um
they
were
gonna
cancel
his
appointment
for
the
next
day
because
our
insurance
was
not
approving
it.
And
our
insurance
was
great
insurance.
Um,
he
he
was
the
uh
primary
person
on
it.
I
had
it,
but
we
never
required
prior
authorization,
even
for
an
MRI.
So
there
was
no
way
in
my
mind
they
were
gonna
deny
us
immunotherapy.
So
instead
of
just
accepting
it,
I
was
like,
look,
don't
cancel
his
appointment.
Let
me
call
my
insurance
company
and
see
what's
going
on.
Um,
so
I
knew
how
to
talk
to
the
insurance
company.
I
knew
that
they
used
codes
and
not
plain
language.
So
I
had
everything
that
I
needed
up
front.
And
when
I
talked
to
my
insurance
company,
there
was
no
denial.
They
wouldn't
deny
immunotherapy.
The
specific
code
was
like
everything,
there
was
no
reason
for
me
being
told
they
were
canceling
the
appointment
the
next
day
because
of
my
insurance.
So
I
called
the
nurse
back
and
I
explained
to
her
what
I
learned
from
my
insurance
company.
And
she
was
very
apologetic.
And
she's
like,
Okay,
I'm
so
glad
you
did
that.
We'll
see
you
tomorrow.
Ten
minutes
later,
she
calls
me
back
and
she
said,
I
just
spoke
with
our
prior
authorization
specialist.
Now,
back
in
the
day,
when
I
was
still
doing
this
job,
I
well,
the
nursing,
like
bed
clinic,
um
actual
hands-on
nursing
instead
of
management
or
leadership,
I
was
the
one
that
did
the
prior
authorizations.
So
I
was
the
nurse
that
took
you
back,
I
got
your
vitals,
I
gave
you
your
treatment,
I
followed
up
with
you,
you
know,
and
now
it's
siloed
out.
Um,
it's
not
always
that
person
who
does
it
for
you.
And
so
in
this
particular
case,
they
had
prior
authorization
specialists.
Um,
and
I
knew
from
where
I
work,
we
had
nurses
that
filled
that
role,
but
not
everyone
did.
Um,
a
lot
of
people
hire
people
and
then
they
train
them
to
do
the
job.
Uh,
and
so
when
the
nurse
called
me
back,
she
said,
our
prior
authorization
specialist
said
that
you
use
the
wrong
code
essentially,
when
I
spoke
to
the
insurance
company.
And
I
was
like,
I
used
the
wrong
what?
And
she's
like,
Yeah,
you
used
the
wrong
code.
And
I
said,
No,
I
didn't.
Like,
what
code
is
she
saying
I
was
supposed
to
use?
And
when
she
read
it
back
to
me,
I
knew
immediately
what
happened
was
the
prior
authorization
specialist
flipped
her
codes.
So
where
she
should
be
putting
the
procedure
code,
she
was
putting
his
diagnosis
code,
and
the
systems
were
not
recognizing
it
as
a
code
at
all
because
they're
different
values,
different
numeric
order,
you
know,
decimals
included
and
not.
And
right.
I
was
I
was
very
agitated,
but
also
very
kind.
And
I
told
the
nurse,
I
was
like,
Look,
I'm
this
is
what
happened.
This
is
why
your
prior
authorization
specialist
is
not
getting
an
approval.
Um,
what
she
needs
to
do
is
this.
And
if
she
needs
me
to
walk
her
through
how
to
do
her
job,
she
can
call
my
cell
phone
and
I'll
be
happy
to
do
it
for
her.
But
otherwise,
we'll
see
you
tomorrow
at
9:30
in
the
morning.
And
the
nurse
was
like,
I'm
so
sorry.
We
will
see
you
tomorrow.
We'll
see
you
tomorrow.
And
um
my
husband,
of
course,
you
know,
like
a
lot
of
people,
I'm
I'm
a
little
mouthy
at
times.
Um,
and
so
my
husband,
he
was
like,
I
can't
believe
you
did
that.
Like
they're
gonna
be
so
mad
at
us
for
pushing
back.
I'm
like,
no,
they're
not.
Like,
they're
not
gonna
be
mad.
And
when
we
got
there
the
next
day,
the
nurse
and
the
doctor
both
came
to
us
and
were
so
grateful
that
I
figured
it
out.
Here
they
had
had
patients
who
had
been
denied
treatments
and
they
could
never
figure
out
why,
because
it
didn't
make
any
sense.
And
now
they're
thinking
for
however
long
and
however
many
patients,
this
was
the
issue
the
whole
time.
And
it
took
somebody's
another
patient's
wife
to
figure
it
out.
And
I
realized
then,
you
know,
we're
all
human
on
the
back
end,
you
know,
like
in
the
clinics
and
doctors
are
humans
and
we
make
mistakes.
But
we
often
think
that
if
it's
a
word
coming
from
a
doctor's
office,
it's
gospel.
True.
You
know,
if
your
insurance
is
denied,
you
hear
my
insurance
denied
it,
you
never
question
it
because
you
think
they
know
what
they're
doing.
And
most
of
the
time
they
do,
you
know,
but
there's
mistakes
that
happen.
Um,
and
so
I
had
three
nurses
um
that
worked
for
me
at
the
time
who
did
prior
authorizations.
And
the
very
first
thing
I
did
after
we
figured
this
out
was
I
called
them
up.
I
was
like,
if
you
ever
get
somebody
denied
cancer,
you
best
be
following
up
with
someone
else.
Like,
don't
just,
you
know,
because
it
can
happen.
You
know,
you
can
we
people
are
dyslexic,
or
even
those
who
aren't
dyslexic
can,
you
know,
change
numbers
and
letters,
double
check
your
work,
you
know,
that's
one
of
the
big
things
and
making
sure
you're
doing
it
right,
especially,
you
know,
with
this
case.
I
always
wondered
like
how
if
it
was
the
same
person
who
was
getting
denied,
denied,
denied,
denied,
why
weren't
they
checking
that
person
to
see
why?

SPEAKER_00
9:10

Yeah,
exactly.
And
um,
yeah,
you
really
do
have
to
become
that
advocate

How Healthcare Players Pull You Apart

SPEAKER_00
9:15

and
ask
those
questions
because
insurance
is
crazy.

SPEAKER_04
9:19

It's
a
whole
and
I
often
tell
people,
like,
you
know,
I
I
separate
the
healthcare
system
into
three
major
players.
You
have
like
your
providers
and
your
doctors,
you
have
your
facilities,
so
whoever
they
work
for,
you
know,
if
it's
a
hospital
or
a
private
practice
or
whoever,
and
then
you
have
your
insurance
companies.
And
they
all
three
have
different
objectives.
They
all
say
the
patient's
the
first,
but
really
the
patient's
part
of
it,
but
they're
not
usually
the
primary
objective.
Yeah.
You
know,
the
insurance
companies
want
to
save
money,
the
facilities
want
to
make
money
by
getting
more
money
from
the
insurance
companies.
The
providers
are
kind
of
stuck
in
the
middle,
wanting
to
give
you
the
best
care
they
can,
limited
to
what
the
other
two
say.
So,
you
know,
it's
a
it's
a
strange
game
that
we
have
to
walk.
And
um
unfortunately,
that
wasn't
the
only
issue
or
concern
that
came
up
during
my
husband's
two
little
over
two
years
of
treatments
that
I
had
to
step
in
and
um
question
and
investigate
and
fix.

SPEAKER_00
10:25

And
and
I
completely
understand
that
because
a
long
time
ago
my
dad
was
in
the
hospital
and
we
thought
he
was
having
a
heart
attack,
brought
him
into
the
emergency
room,
and
you
know,
they
they
took
care
of
him
and
all
that.
And
then
my
mom
and
dad
got
these
bills,
and
they
were
saying
they
weren't
gonna
pay
for
the
uh
ER
doctors.
The
insurance
was
saying
that,
and
they
were
like,
because
they're
not
covered.
And
I
was
like,
Am
I
supposed
to
stop
and
ask
while
he's
in
the
middle
of,
you
know,
the
hospital
was
in
the
network,
but
the
ER
doctors
weren't.
I
was
like,
Am
I
supposed
to
ask
that
while
he's
having
a
heart
attack?
You
know,
it's
crazy.

SPEAKER_04
11:00

Uh
the
things
and
that
happens
too.
I
when
we
had
uh
providers
come
through
that
um
where
I
worked,
we
had
to
have
locums
for
a
time.
And
the
locums,
depending
on
what's
going
on,
can
bill
under
the
absent
provider,
but
we
ran
into
a
situation
where
there
was
no
real
absent
provider.
We
just
didn't
have
a
provider
hired
in
that
area
anymore.
So
then
you
can't
bill
them
the
same
way.
So
we
ended
up
having
issues
where
patients
were
coming
in
and
being
seen
by
providers
who
were
not
under
our
network.
I
mean,
they
were
technically
employed
by
us,
but
they
weren't
credentialed
through
the
insurance
company,
so
it
the
insurances
wouldn't
pay
for
them.

SPEAKER_00
11:38

Yeah.
You're
already
dealing
with
that
whole
like
web
craziness
of
the
diagnosis,
and
then
you
have
all
of
that
other
stuff
with
the
insurance
for
it.
So
for
someone
who
whose
loved
one
was
just
diagnosed
and
you
know
you
feel
completely
overwhelmed,
what
are
the
first
few
things
you
tell
them
to
do?

SPEAKER_04
11:59

So
the

Get Organized Before The Next Crisis

SPEAKER_04
12:00

first
thing
that
I
really
preach
is
organization.
Um,
if
you're
gonna
fight
for
anything
later,
or
if
you're
gonna
have
to
find
things,
you
want
it
all
in
one
centralized
area.
Um,
a
lot
of
people,
that's
a
three-ring
binder.
Uh,
some
people
it
might
be
a
Google
Drive,
it
might
be
your
notes
app,
but
making
sure
everything
is
together.
And
when
I
say
everything,
I'm
talking
copies
of
your
insurance
card.
I'm
talking
an
up-to-date
current
medication
list,
a
list
of
your
entire
care
team.
Like
a
lot
of
us,
um,
you
know,
for
my
husband,
for
example,
he
didn't
have
just
one
doctor.
He
had
a
primary
care
doctor,
he
had
an
ophthalmologist
that
was
checking
out
his
eyes,
he
had
an
oncologist
that
was
doing
his
cancer.
When
he
developed
central
nervous
system
lymphoma
on
top
of
the
renal
cell
cancer,
he
ended
up
with
a
different
oncologist
that
specialized
in
lymphomas
of
the
brain.
And
so
it's
hard
to
try
to
find
the
information
you
need
in
an
emergency
if
it's
not
altogether.
And
then,
God
forbid,
as
the
caregiver,
if
something
were
to
happen
to
you,
you
know,
you
want
to
be
able
to
have
someone
pick
it
up
and
and
roll
with
it.
And
having
it
all
together
will
make
sure
that
happens.

SPEAKER_00
13:10

No,
that
that
is
that's
very
true
because
they'll
ask
you
what
medications
are
they
on,
and
sometimes
you
can't
remember
all
of
them.
So
to
have
that
list,
especially
if
somebody's
on
a
lot
of
medications
with
it.
So
you
said
that
your
husband
was
treated
for
the
wrong
cancer
for
over
a
year.
How
does
a
mix
misdiagnosis
like
that
happen?

SPEAKER_04
13:30

So
it's
kind
of
complicated.
My
husband
was
treated
for
renal
cell
cancer,
um,
which
he
had,
but
what
led
us
to
finding
the
renal
cell
cancer
was
he
was
having
some
vision
issues
and
um
with
his
right
eye.
And
um
he
ended
up
seeing
an
ophthalmologist
the
entire
time
as
well.
They
did
procedures
on
his
right
eye,
they
biopsied
his
right
eye,

When The Diagnosis Changes Everything

SPEAKER_04
13:55

uh,
and
we
could
never
find
a
definitive
diagnosis
for
what
um
was
wrong
with
his
eye,
other
than
it
has
to
be
renal
cell
cancer.
Um,
he's
already
got
it
in
his
abdomen,
you
know,
he
had
it
in
his
liver
and
his
pancreas.
It's
rare,
but
it
has
to
be
what's
in
his
eyes,
too.
Um
a
year
later,
January
23
is
when
he
first
got
diagnosed
with
the
recurrence.
Um
January
24,
his
PET
scan
came
back
and
he
had
lesions
in
his
brain.
So
we
thought
metastasis
from
the
renal
cell
cancer
to
his
brain.
He
had
a
procedure
done
um
on
Valentine's
Day
called
gamma
knife
radiation.
Um,
so
if
anyone's
not
familiar
with
it,
it's
a
very,
very
safe,
very
precise
uh
radiation
uh
procedure
that
goes
into
the
brain.
Um
it's
so
safe
that
patients
actually
can
go
back
to
work
the
next
day.

SPEAKER_00
14:48

Oh,
wow.

SPEAKER_04
14:49

Um,
and
my
husband
woke
up
the
next
day
and
couldn't
put
his
pants
on
or
write
his
name.
Oh.
And
so
I
took
him
to
our
local
ER
where
I
worked
at.
He
had
a
CT
done
and
he
had
swelling
on
the
brain
that
was
crossing
the
midline.
So
we
had
to
transfer
him
to
the
hospital
where
he
was
receiving
his
um
treatment.
Because
mind
you,
um,
I
live
in
rural
West
Virginia.
Okay.
So,
you
know,
uh
the
oncology
center
that
we
went
to
is
an
hour
and
a
half
away
from
our
house
because
that's
the
closest,
most
appropriate
place
for
his
type
of
cancer.
Um,
and
so
they
transferred
him
there
and
he
ended
up
having
the
next
day
an
emergency
craniotomy.
And
they
went
in,
removed
the
swelling
um
in
the
piece
of
his
brain
that
was
causing
the
swelling.
Um,
and
again,
he
was
discharged
the
next
day
because
you
know,
we've
advanced
medicine
a
lot
in
some
areas.
Right.
Um,
but
a
week
later
they
called
us
and
was
like,
pack
your
bags,
get
up
here,
you
need
to
be
admitted.
Oh,
and
what
happened
was
the
cancer
that
was
in
his
brain
was
not
renal
cell.
Oh
it
was
central
nervous
system
lymphoma.
And
so
after
discussing
it
with
the
providers
and
researching
it,
because
I've,
you
know,
of
course,
being
on
both
sides
of
the
bed,
I'm
like
looking
things
up,
trying
to
figure
out
what
it
was.
I
found
that
his
eye
was
textbook,
intraocular
lymphoma.
But
nobody
would
have
thought
you
would
have
had
two
primary
cancers
at
the
same
time.

SPEAKER_02
16:22

Wow.

SPEAKER_04
16:23

And
even
his
ophthalmological,
and
we
biopsied
his
eye
and
it
was
inconclusive.
So
there
wasn't
anything
that
anyone
did
to
miss
it.
It
was
just
one
of
those
things
that
occurred.
Um,
and
you
know,
I
even
talked
to
the
ophthalmologist.
I'm
like,
could
it
have
been
intraocular
lymphoma
the
whole
time?
And
because
intraocular
lymphoma,
when
left
untreated,
will
spread
to
the
brain
and
become
central
nervous
system
lymphoma.
And
um,
he
was
like,
you
know,
that's
a
possibility.
Uh,
because
this
looking
back,
that's
what
it
appears.
Um,
looking
forward,
you
would
have
never
had
assumed
that.
Um,
but
they
have
two
completely
different
treatments.
Um,
his
renal
cell
cancer
was
treated
with
immunotherapy
and
targeted
cell
therapy
um
oral
medication.
So
he
had
infusions
and
oral
meds
where
the
um
central
nervous
system
lymphoma
is
actually
treated
with
a
high
dose
chemo.
And
so
he
had
to
be
admitted
to
the
facility
every
other
week
for
five
days
to
receive
high
dose
methotrexate
um
to
cure
the
uh
central
nervous
system
lymphoma.
Um
and
he
was
cured
of
it
from
July
until
April
1st
of
2025.
So
um
what's
that,
like
seven
months,
eight,
nine
months?
And
um
he
started
having
symptoms
that
I
thought
were
stroke-like.
And
then
I
took
him
to
the
hospital,
found
out
that
the
cancer
had
come
back
in
his
brain.
And
that
was
when
he
decided
that
he
didn't
want
to
do
treatment
anymore.

SPEAKER_00
18:02

And
that,
you
know,
that's
a
hard
decision
to
get
to
with
it,
which
goes
it
I
think
it's
harder
sometimes
for
the
caregiver
than
the
person
who
is
sick.

SPEAKER_04
18:12

Yes.
I
having
been
in
nursing
so
long,
I
had
seen
patients
who
hold
on
and
suffer

Choosing Hospice And Defining Quality Of Life

SPEAKER_04
18:20

um
for
loved
ones.
Right.
You
know,
they
they
wouldn't
let
go
because
their
daughter
wouldn't
let
them
go.
And
uh
so
I
knew
how
I've
seen
both
sides
of
that.
And
um,
and
so
when
his
cancer
first
came
back,
we
knew
it
was
terminal
um
and
that
we
were
just
managing
symptoms
and
slowing
progression.
And
so
I
told
him
then,
I
was
like,
you've
got,
you
know,
well,
first
when
he
had
the
cancer
the
first
time
in
2016,
he
told
me
that
if
it
ever
came
back,
he
wasn't
gonna
do
treatment.
But
there
was
something
major
that
happened
between
2016
and
it
coming
back
in
2023,
and
that
was
we
had
our
son
in
August
of
2020.

SPEAKER_00
19:04

Okay.

SPEAKER_04
19:04

And
so
um
we
had
a
discussion
early
on,
and
I
asked
him,
I
was
like,
Are
you
gonna
fight?
And
he's
like,
Yeah,
I'm
I
got
Finnegan.
We
we're
gonna
fight.
I
was
like,
All
right,
we're
gonna
fight.
I
said,
We're
not
gonna
half,
you
know,
we're
not
gonna
half
fight
it.
Right,
we're
gonna
go
full
on.
And
I
told
him
then,
I
was
like,
but
when
you're
tired,
you
need
to
tell
me
because
I
will
do
what
you
need
me
to
do.
And
so
um
over
the
two
years,
there
were
a
lot
of
times
where
things
just
kind
of
got
sketchy.
And
the
last
November,
um,
the
cancer
in
his
abdomen
from
his
renal
cell
really
began
to
spread.
And
so
we
actually
started
hospice
um
then.
Uh
and
it
wasn't
the
I'm
gonna
die
tomorrow
kind
of
hospice.
I
called
it
like
DCAF
hospice.
It
was
the
palliative
prep
kind
of
thing.
They
came
out
like
once
a
month,
but
they
had
his
information,
they
had
him
in
the
system.
You
know,
the
paperwork
was
all
done
and
they
knew
us.
Um,
so
when
he
decided
in
April
of
25
that
he
he
was
done,
I
didn't
have
to
fight
to
get
paperwork
done
real
quick.
All
I
had
to
do
was
pick
up
the
phone
and
call
the
hospice
organization
and
be
like,
hey,
this
is
what
happened,
this
is
where
we're
at.
And
so
then
they
started
picking
up
visits
and
was
there
with
us
until
the
end.

[Ad] Living a Life in Balance – PODCAST

SPEAKER_00
21:10

My
mom
used
to
always
say,
it
used
to
make
her
angry
when
people
would
say
that
uh
anybody
who
had
the
terminal
illness,
and
they
would
people
would
say
that,
oh,
they
gave
up.
And
my

(Cont.) Choosing Hospice And Defining Quality Of Life

SPEAKER_00
21:19

mom
would
always
say,
they
didn't
give
up,
their
body
gave
out.
There
is
a
difference.
It
used
to
make
her
so
angry.
She's
like,
no,
you
know,
uh,
with
it.
And
also,
people
don't
realize
everything
that
hospice
can
do.
You
can
get
hospice
a
lot
earlier.
It's
not
like,
oh,
it's
the
end.
They
they
they
do
so
much
for
you.

SPEAKER_04
21:38

Uh
not
only
the
and
your
family.

SPEAKER_00
21:40

Yes,
your
family
that
helps
so
much
with
it.
Um,
you
know,
in
your
book,
you
say
caregiving,
there's
so
much
caregiving
advice
about
self-care
and
staying
positive.
Why
do
you
think
that
approach
doesn't
work?

SPEAKER_04
21:55

I
don't
want
to
say
it
doesn't
work,
but
it's
also
it's
often
used
as
the
only
approach.
And
I
really
feel
by
teaching
a
caregiver
to
advocate,
by
asking
questions
and
being
more
involved
in
the
decision-making
process
of
the
care
and
not
just
taking
it
like,
for
example,
that
ex
with
uh
his
insurance
saying
his
immunotherapy
was
denied.
Um
it
gives
you
more,
I
don't
want
to
say
power
over
the
situation,
but
um
it's
kind
of
like
more
power,
you
know.
You
you
you've
had
a
more
participating
um
I'm
losing
my
words
today.
I'm
sorry.
That's
okay.
But
you
you
were
you're
able
To
participate
in
it
at
a
higher
level.
Right.
And
so
when
your
loved
one
passes
away,
you're
not
back
air
questioning
yourself.
Um,
could
I
have
done
this?
What
if
I
done
this?
You
know,
I
had
people
early
on
try
telling
Dave,
like,
you
need
to
go
to
a
clinical
trial,
you
need
to
go
to
a
clinical
trial.
And
Dave
was
very
adamant,
I
don't
want
to
go
in
a
clinical
trial.

SPEAKER_00
22:59

Right.

SPEAKER_04
23:00

Uh,
you
know,
I
I
had
for
years
stressed
about
quantity
quality
of
life
versus
quantity
of
life.
You
know,
his
grandmother
had
passed
away
before
he
and
I
ever
got
together,
but
she
had
developed
dementia
and
their
family
had
put
her
a
feeding
tube
in
her.
And
this
was
in
the
90s,
like
early
90s.
And
um,
she
lived
for
10
years
with
that
feeding
tube
and
not
knowing
who
her
family
was.
And
so
he
always
remembered
that.
And
he's
like,
I
don't
want
to
be
a
burden,
I
don't
want
to
be
the
person
who's
laying
there
and
not
knowing
who
I
am.
I
want
to
have
quality
of
life
versus
quantity.
And
um,
I
think
that's
a
big
distinction
that
we
need
to
talk
about
a
lot
of
the
times.

SPEAKER_00
23:50

Oh,
I
agree.
I
agree,
because
it
becomes,
yeah,
the
quality
of
the
person's
life.
Like
when
we
when
my
dad
and
I
brought
hospice
in
for
my
mom,
you
know,
when
they,
you
know,
they
go
through
the
all
the
paperwork
and
asking
you
about
DNRs
and
all
that.
We
automatically
knew,
you
know,
my
mom
didn't
want
that.
She
wouldn't
want
the
feeding
tube,
all
of
that.
Um,
and
actually
the
hospice
had
told
us
with
dementia
patients
it's
actually
better
not
to
have
the
feeding
tube
because
they
don't
know
what
it
is,
they
get
scared,
they
pull
it
out,
and
then
you're
back
in
the
hospital,
and
it's
this
vicious
circle.
Um
and
it
doesn't
really
do
uh
the
work
that
you
do.

SPEAKER_04
24:25

They
just
hold
on
there
to
be
in
a
vegetative
state
a
lot
of
the
times.

SPEAKER_00
24:31

Yeah,
yeah.
Um,
and
and
the
thing
with
positive,
um
my
dad

Hard Talks About Death And True Wishes

SPEAKER_00
24:36

is
going
through
a
lot
of
health
issues
right
now,
so
I'm
now
being
his
caregiver
now,
too.
And
he's
having
some
issues,
he's
not
eating
a
lot.
And
you
know,
one
of
my
friends
was
the
other
day
was
like,
Oh,
just
be
positive.
And
I'm
like,
Well,
I
can
be
all
the
positive
I
want,
but
if
he's
not
eating,
that's
a
problem.
You
know,
it's
like
yeah,
and
I
agree
with
you,
you
you
have
to
advocate
because
sometimes
when
the
person
is
sick,
it
it's
not
that
they
don't
want
to
advocate
for
themselves,
but
they
just
don't
have
it
in
them
at
that
moment.
They
don't
have
the
strength,
yeah,
and
and
you
you
need
to
be
able
to
ask
those
questions
to
the
doctor
and
ask
those
difficult
questions
that
you
really
don't
want
to
know
the
answers,
but
you
you
need
to.

SPEAKER_04
25:15

So
you
Yeah,
and
I'd
add
to
that
too,
um,
and
I
can
tell
from
our
conversation
that
you've
had
those
conversations
with
your
dad.
And
so
you
know
what
his
true
wishes
are.
Yes.
And
a
lot
of
people
are
afraid
to
have
these
conversations
because
they
feel
like
it's
inviting
it.
Right.
Like
if
I
don't
talk
about
it
and
I
ignore
it,
then
you
know,
this
is
never
gonna
happen.
And
that's
the
farthest
thing
from
the
truth.
You
know,
it's
we
all
are
going
to
die
at
some
point.

SPEAKER_00
25:42

Right.

SPEAKER_04
25:42

Um,
and
so
knowing
what
your
loved
one
wants
and
following
that
um
is
another
thing
that
will
empower
you
to
be
a
better
caregiver,
I
think.

SPEAKER_00
25:52

Well,
as
a
matter
of
fact,
a
couple
weeks
ago,
because
my
dad's
had
this
lung
issue,
but
anyway,
he
was
he
just
went
from
the
ICU
down
to
the
stepdown
unit,
and
he
was,
you
know,
still
kind
of
still
in
in
somewhat
of
a
critical
state.
And
I
said
to
him,
like,
well,
do
you
think
you're
dying?
And
he
was
like,
Well,
and
then
I
psycho,
do
you
think
you're
gonna
see
my
mom
soon?
Do
you
think
you're
seeing
her
soon?
And
he's
like,
hesitated.
And
then
he
was
like,
No,
I
don't
think
I'm
gonna
see
her
soon.
I'm
like,
Okay,
well
then
there
we
go.
You
know,
like,
and
I
know
some
people
might
have
been
like,
Oh
my
god,
how
could
you
ask
him
that?
But
I
needed
to
know
where
his
mental
state
was.
Like,
did
he
feel
that
that's
where
he
was
at?

SPEAKER_04
26:30

You
know,
and
a
lot
of
times
studies
show
that
people
who
are
dying
know
it
even
if
they
don't,
you
know,
like
if
he
would
have
said
yes,
then
that
would
have
been
a
a
sign
and
a
sense,
okay,
let's
let's
take
a
step
back
and
figure
out
where
we
want
to
move
things
because
I
do
believe,
and
I'd
seen
it
too
with
dementia
patients
when
I
used
to
work
in
a
nursing
home
as
a
CNA
years
ago.
You
know,
they
know.
You
know,
my
husband,
he
knew.
Um,
you
know,
and
there's
even
stories,
if
you
listen
out
there,
people
who
die
traumatically
who
are,
you
know,
months
or
weeks
leading
up
to
their
death
are
trying
to
make
arrangements
that
they
never
done
before.

SPEAKER_00
27:12

Yeah.

SPEAKER_04
27:13

You
know,
it's
sort
of
like
your
body
knows,
okay,
my
time's
done.
I
better
settle
things.
Um,
if
you
look
back,
a
lot
of
times
you
can
see
those.

SPEAKER_00
27:21

Yeah,
that
that
is
that
is
very
true.
And
and
it
I
I
agree
with
you.
People
think
that
if
they
bring
it
up,
then
you're
inviting
it,
but
it
isn't.
You
need
to
know
those
things

What No One Tells You About After

SPEAKER_00
27:32

uh
with
it.
Now
you
said
your
husband
he
died
at
home.
What
do
you
wish
someone
had
told
you
about
that
and
everything
that
followed?

SPEAKER_04
27:41

I
knew
I
wanted
him
early
on
to
be
home
with
us.
Um,
he
he
in
the
beginning,
we
had
discussions
and
we
talked
a
lot
about
the
end
um
because
we
knew
it
was
coming.
And
um,
so
like
I
remember
one
of
the
discussions
we
had
early
on
was
he
told
me,
he's
like,
if
I
get
bad,
I
want
you
to
put
me
in
the
hospital
so
I
can
die
at
the
hospital.
I
was
like,
why
would
you
want
to
die
at
the
hospital?
Like,
I
want
you
home.
And
he's
like,
No,
I
don't
want
to
do
it
in
front
of
Finn.
You
know,
I
don't
want
Finn,
that's
our
son,
Finnegan.
He's
like,
I
don't
want
Finnegan
to
to
deal
with
that.
And
I
was
like,
So
you'd
rather
him
see
his
dad
leave
the
house
one
day
and
never
come
back?
Right.
And
when
I
asked
him
that,
he's
like,
Okay,
we'll
stay
at
home.
You
know,
but
it
was
I
think
the
being
at
home
was
a
great
thing.
Um
it
was
the
after
that
was
hard.
The
the
figuring
out
like
when
to
clean
the
closet
out,
you
know,
um
when
to
move
the
boots.
I'll
be
honest
with
you.
I'm
looking
over,
I
have
a
refrigerator
in
here
that
still
has
all
of
his
hats
on
it
because
I
haven't
taken
them
down
and
it's
been
since
April
of
25.
You
know,
we
all
move
at
our
own
pace.
Um,
and
so
that
that
that's
been
I
think
the
biggest
surprise
is
just
how
hard
it
is
um
sometimes
to
let
go
of
those
things.

SPEAKER_00
29:09

I
would
agree
with
that.
And
well,
I
wish
my
mom
could
have
been
at
home.
So
I
felt
like
because
she
wasn't
she
was
in
a
memory
care
facility,
but
it
was
a
really
nice
facility,
and
she
had
her
own
apartment
and
everything
was
all
her.
So
it
was
her
bed
and
everything.

SPEAKER_04
29:25

Her
home
at
that
time.

SPEAKER_00
29:26

Yeah,
so
I
at
least
felt
good
with
that,
and
I
was
able
to
be
with
her
and
everything.
But
I
remember,
you
know,
everybody
deals
with
it
differently.
But
my
dad
that
morning,
like
he
started
cleaning
out
the
apartment,
and
thank
God
I
had
some
family
friends
there
because
after
a
little
while
they
were
like,
I
think
we've
done
enough
for
today.
I
was
like,
seriously,
what
are
you
doing?
Like,
I
mean,
I
knew
it
needed
to
happen,
but
I
was
like,
could
we
wait
a
little
bit
here?
You
know,
um,
and
I
still
have
a
lot
of
her
um
her
clothes
and
things,
and
I
keep
going
I
I
through
hospice,
you
know,
they
do
the
uh
the
memory
bears
and
and
and
I
know
somebody
they
put
the
quilts
together
and
stuff,
and
I
just
haven't
quite
gotten
there
yet.
But
that's
what
I
want
to
do.
I
just
haven't
gotten
there.
But
yeah,
we
all
move
at
our
own
pace.
Like
I
have
things
that
were
hers,
and
I'm
like,
nope,
I
I
just
need
to
keep
it.
It
makes
me
happy
when
I
see
it,
you
know,
with
it.

SPEAKER_04
30:15

Um
so
obviously
you're
just
closer
still
in
my
garage
and
trash
bags
waiting
to
go
to
Goodwill.
Yeah.
Or
have
a
yard
sale.
You
know,
there's
certain
things
that
I
gave
to
friends
and
family
that
I
knew
would
want
things,
or
maybe
have
a
little
piece
of
something,
but
you
know,
I
pulled
it
all
out
of
the
house,
but
it's
still
in
the
garage
waiting
for
something
to
be
done
with
it.

SPEAKER_00
30:36

Exactly.
I
still,
like
I
said,
I
still
have
uh
her
a
lot
of
her.
I
mean,
I
I
got
rid
of
some
of
her
clothes,
but
other
ones
are
still
there.
And
then
some
of
them
I
wear
because
I'm
like
just
some
days
I'm
like,
I
just
need
to
feel
her,
you
know,
with
that.
And
I
agree,
it
just
goes
at
your
own
pace
with
it.
It
it's
hard
no
matter
when
you
do
it,
but
you
don't
let
anyone
rush
you.

SPEAKER_04
30:56

You
do
it
as
you
need
to.

SPEAKER_00
30:57

Exactly.
You
know,
and
go
through
it
as
slowly
or
as
fast
as
you
you
need
to,
because
it
hits
you
at
different
points
with
it.
So
obviously
you're
a
nurse
and

Writing The No BS Guide To Caregiving

SPEAKER_00
31:06

and
now
you're
a
widow
and
you're
an
author.
So
who
did
you
write
this
book
for
and
what
do
you
want
them
to
walk
away
with
knowing?

SPEAKER_04
31:15

Uh,
my
husband,
like
I
said,
he
often
said,
What
do
people
who
don't
have
a
Tiffy
do?
Um,
and
that
was
like
his
thing,
especially
whenever
we
would
run
into
bumps
in
the
road
or
I'd
have
to
be
calling
the
insurance
companies.
He's
like,
What
do
people
who
don't
have
a
Tiffy
do?
And
so
um
the
last
month
I
took
off
work
um
because
he
was
full
care
at
that
time.
And
um
sitting
at
home,
not
going
to
work
50
hours
a
week,
uh,
and
I
still
took
my
son
to
daycare
during
that
time
because
I
wanted
him
to
still
have
some
normalcy
in
his
life.
Um,
I
had
time
to
think
and
it
I
had
done
some
fiction
a
long
time
ago,
and
I
was
like,
I
need
to
write
a
book.
I
need
to
tell
people,
you
know,
how
they
can
do
these
things.
And
so
it
evolved
from
there.
Um,
and
then
last
year,
also
on
top
of
all
that,
my
grandmother
she
had
suffered
from
dementia
and
she
passed
away
on
September
12th.

SPEAKER_03
32:12

Okay.

SPEAKER_04
32:13

And
so
my
mom
had
been
her
full-time
caregiver
live
in
actually
since
November
the
year
before,
because
her
longtime
boyfriend
of
36
years
had
passed
away
suddenly
in
the
middle
of
the
night.
And
so
um
after
my
grandmother
passed
away,
I
I
don't
know
what
happened
to
me.
Um,
my
birthday
was
shortly
after
that,
and
I
kind
of
like
I
feel
like
I
had
a
mental
breakdown,
but
I
didn't.
Um,
and
like
I
remember
going
to
work
that
Monday
after
my
birthday,
and
I
was
like,
I'm
just
gonna
quit.
I'm
gonna
quit
my
job.
I
don't
need
to
work
anymore.
I
can
work
at
McDonald's,
and
because
of
my
husband's
life
insurance,
I
was
able
to
pay
off
my
house,
pay
off
my
vehicles,
you
know,
I
don't
have
any
debt.
And
so
I
was
like,
I'll
I
don't
need
to
do
any
of
that.
I
just
need
to
be
home
with
Finn
and
I
have
to,
you
know,
and
then
um
I
ended
up
taking
some
time
off
work
uh
uh
FMLA
wise
and
decided
then
not
to
return
to
work
and
work
on
uh
figuring
out
a
way
to
make
a
living
helping
others
who
needed
a
Tiffy.

SPEAKER_00
33:18

Well,
and
I
think
everybody
needs
uh
needs
to
learn
how
to
advocate
because
it's
so
overwhelming.
It
is.
You
know,
you
have
the
the
healthcare
part
of
it,
but
then
you
have
the
financial
part
of
it,
and
then
also
trying
to
uh
balance
your
own
life
at
the
same
time,
and
it
it
just
gets
or
if
you
have
kids,
you're
balancing
them
on
it,
and
then
there's
things
that
pop
up
that
nobody
tells
you
about.

SPEAKER_04
33:42

Like
when
my
husband
passed
away,
he
had
a
will
because
we'd
learned
from
others,
like
you
know,
just
because
I'm
the
wife,
make
it
easy
and
put
it
all
in
a
will,
you
know.
Right,
right,
do
things
and
so
um,
like
he
had
a
will,
but
I
didn't
anticipate
when
I
went
to
the
courthouse
that
I
was
gonna
have
to
pay
$86
to
to
process
the
paperwork
that
we'd
already
done.
Right,
you
know,
like
you
have
to
pay
$86
to
like
do
the
estate
beneficiary
things.
I'm
like,
are
you
serious?
Yeah,
like
we
were
in
a
place
where
that
was
fine,
you
know,
like
$86
was
I
don't
want
to
say
nothing,
it's
$86,
but
I
was
able
to
afford
it.

SPEAKER_00
34:22

Right.

SPEAKER_04
34:22

There's
people
out
there
who
don't
have
the
$86
and
they
just
lost
their
loved
one,
and
now
you're
trying
to
get
$86
out
of
them
to
say
they
lost
their
loved
one.
So
people
don't
realize
like
all
the
things
that
come
after
the
caregiving,
too.

SPEAKER_00
34:35

Yes,
yes.
You
get
through
the
caregiving,
but
then
it's
a
whole
nother
uh
experience
afterwards
with
everything
for
it.
So
your
book
is
called
The
No
BS
Guide
to
Caregiving.
Where
can

Where To Find The Book And Resources

SPEAKER_00
34:51

people
purchase
the
book?

SPEAKER_04
34:53

So
it
is
on
Amazon
and
Apple
Books.
Um,
and
uh
it's
done
really
well.
People
who've
read
it
um
really
seem
to
enjoy
it,
and
um,
it's
not
just
a
book
about
caregiving.
You
know,
I
often
say
you
if
you
have
um
medical
problems
or
if
you
are
part
of
the
healthcare
system,
you
can
benefit
from
reading
it
too
because
you
might
be
the
one
who
has
to
ad
advocate
for
yourself.
Um,
and
so
it's
really
meant
to
help
navigate
the
healthcare
system.

SPEAKER_00
35:27

Which
people
need
a
lot
of
that
help
because
it's
very
confusing.

SPEAKER_04
35:31

It
is.
Even
for
people
who
work
on
it,
it's
confusing
because
it's
very
siloed.

SPEAKER_00
35:35

Yes.
And
you
also
have
a
website,
correct?

SPEAKER_04
35:38

I
do.
Um,
my
website
is
tiffanyovell.com.
Um,
I
currently
have
some
free
resources
up
on
there.
Um
I
actually
just
put
out
a
companion
workbook
to
go
with
the
NoBS
Guide.
Um,
and
so
there
are
some
pieces
of
it
that
are
on
the
website
that
you
can
download
and
start
your
organization
process.
Because
again,
I
always
really
stress
being
organized.
Um,
and
I'll
be
adding
more
resources
to
it
over
time.

SPEAKER_00
36:08

Well,
thank
you
so
much
for
joining
us.
This
has
been
so

Final Takeaway And Goodbye

SPEAKER_00
36:11

insightful,
very
helpful.

SPEAKER_04
36:13

Thank
you
for
having
me.
I
really
appreciate
it.

SPEAKER_00
36:15

Yes.
So
hopefully
you've
enjoyed
this
and
make
sure
you
get
yourself
organized
because
that
is
very,
very,
very
uh
important
tip
there.
So
hopefully
you've
enjoyed
our
discussion
today.
So
hope
you
got
your
cup
of
tea,
your
cup
of
coffee,
or
if
you're
having
that
really
bad
day,
a
glass
of
wine,
and
please
join
us
for
another
edition
of
Patty's
Place.