Alzheimer’s

sucks.

It
sucks
for
the
victim,
and
it
sucks
for
the
caregiver.

I
was
my
husband’s
caregiver
for
six
years
after
his
diagnosis,
so
I
know
first-hand
how
much
it
sucks.
Weirdly
though,
the
scrolling
I
did
on
Instagram
after
tucking
David
in
at
night
or
in
between
cleaning
up
and
cooking
(and
cleaning
up
again),
brought
me
some
solace.
And
while
this
helped
me
immensely,
it
wasn’t
the
cat
videos
or
bhangra
dancing
tutorials
that
got
me
through.

It
was
Emma
Heming
Willis’
account.

What
I
discovered
during
my
caregiver
journey
is
that
there
is
a
whole
world
of
Alzheimer’s
influencers
out
there.
I
acknowledge
the
stalker-ish
vibe
of
the
algorithm
and
how
it
reads
minds
to
reveal
and
feed
our
preoccupation
with
cute
animals,
strappy
sandals,
tofu
recipes,
and
in
my
case,
Alzheimer’s
help.
While
it
freaks
most
people
out,
I
am
eternally
grateful
for
it.

About
the
same
time
that
my
husband
was
diagnosed
with
Primary
Progressive
Aphasia
(PPA),
the
news
hit
that


Bruce
Willis
was
living
with
it,
too.
Suddenly,
the
masses
were
being
educated
on
a
somewhat
esoteric
condition
that
I
was
intimately
and
painfully
familiar
with
at
home.

When
the
neurologist
gave
us
the
diagnosis,
he
assured
me
it
was
not
Alzheimer’s
and
gave
us
a
referral
for
a
speech
pathologist.
But
my
husband
had
failed
the
clock
face
test,
a
quick
tool
doctors’
use
to
discern
cognitive
decline,
and
had
trouble
counting
down
from
seven,
another
cognitive
staging
tool.
Really,
I
thought
—
not
Alzheimer’s?

Then
COVID
descended
upon
us,
and
we
lived
in
a
bubble.
It
was
just
David
and
me
in
our
apartment.
So
what
if
he
couldn’t
speak;
I
was
his
partner
for
close
to
40
years
and
excelled
at
intuiting
what
he
needed.
I
kept
thinking
that
if
he
stayed
like
this,
it
wasn’t
so
bad.
I
mean,
at
least
it
wasn’t
Alzheimer’s.
As
it
turns
out,
denial
ain’t
just
a
river.

A
year
and
a
half
later
we
saw
a
new
speech
pathologist,
and
she
referred
us
to
a
different
neurologist.
The
verdict
was
PPA.
Probable
cause:
Alzheimer’s.
There
it
was.
We
left
with
a
folder
about
the
condition
and
were
asked
to
return
in
six
months.

Back
to
Bruce
Willis.
As
it
turns
out,
his
wife,
Emma,
and
I
have
a
friend
in
common.
When
I
saw
this
friend
and
told
her
about
David,
she
said
I
should
follow
Emma
on
Instagram.
I
did,
and
learned
that
the
Willis’
had
a
very
similar
experience.
Diagnosis:
Frontal
Temporal
Dementia
and
see
you
in
six
months.

And
so,
I
followed
Emma.

I
was
skeptical
at
first.
How
could
our
experiences
be
the
same?
After
all,
she
was
the
wife
of
a
famous
actor,
and
I
was
the
wife
of
a
college
professor.
Honestly,
I
was
resentful
of
her
privilege.
But
her
honesty
drew
me
in
and
made
me
realize
that
being
rich,
poor
or
in-between
doesn’t
matter.
Caring
for
someone
with
dementia
is
devastating.
Emma
was
sad
and
exhausted,
and
so
was
I.
At
first,
her
feed
centered
on
information
and
resources
concerning
FTD,
but
then
her
focus
became
the
caregiver
and
the
toll
dementia
takes
on
us.

One
thing
led
to
another,
and
other
Alzheimer
feeds
began
popping
up
when
I
scrolled.
I
started
following
Diane
Chew’s


Dementia
Coach
Diane,

and


Adria
Thompson,
a
speech
pathologist
who
offered
really
helpful
tricks
of
the
trade
to
dealing
with
your
person.
I
tried
many
of
her
expert
tips
with
David.
Some
worked
and
some
didn’t.
For
the
life
of
me,
I
could
never
get
him
to
brush
his
teeth,
nor
have
him
let
me
brush
them
for
him.
But
I
took
comfort
in
her
calm
voice
and
situational
role
playing.

Dementia
Coach
Diane
was
a
woman
caring
for
her
husband
with
Lewy
Body
Dementia
in
their
home.
Like
me,
she
looked
exhausted
and
frazzled,
and
her
lipstick
was
often
smeared.
She
was
on
her
last
leg
—
and
she
didn’t
hide
that
in
her
online
persona.

She
did
not
sugar
coat
any
part
of
her
process.
But
you
had
to
give
her
credit
for
trying.
Diane
was
honest
about
how
hard
caregiving
is,
and
that
helped
me
feel
less
guilt
about
the
times
I
wished
my
husband
would
die.

Diane’s
husband,
Ben,
was
often
in
the
videos
with
her.
These
videos
aptly
conveyed
their
love
―
but
also
their
pain.
At
those
moments
when
I
thought
I
might
somehow
harm
David
or
myself,
seeing
her
in
a
similar
situation
allowed
me
to
take
a
deep
breath
and
move
forward
with
love.
Her
feed
was
a
comfort.

While
these
two
content
creators
informed
and
encouraged
me,
Emma’s
feed
quite
literally
saved
my
life
—
because
while
I
was
deep
in
my
caregiving
journey,
as
is
the
case
for
many
women
in
my
situation
especially,
I
had
completely
neglected
to
take
care
of
myself.

In
one
of
her
posts,
Emma
stared
straight
at
the
camera
and
said,
“30%
of
caregivers
die
before
the
person
they
are
caring
for.”
At
this
stage,
I
was
about
three
years
into
my
caregiving
journey
and
thought
I
might
die.
I
never
got
a
full
night’s
sleep,
my
body
ached,
I
felt
isolated
and
my
brain
never
shut
off
because
I
was
always
thinking
about
David’s
needs.

What
she
said
really
resonated
with
me.
I
could
not
die
before
David;
I
needed
to
take
care
of
him.
But
I
also
needed
to
take
care
of
myself.

So,
I
did
what
I
had
been
neglecting
to
do:
I
made
doctor’s
appointments
for
myself.
I
got
a
physical,
a
colonoscopy,
saw
a
cardiologist,
and
finally
made
a
mammogram
appointment.
I
learned
that
I
had
plaque
in
an
artery
and
that
I
had
stage
1
breast
cancer.

It
was
the
breast
cancer
that
hit
me
hard.
But
thanks
to
Emma,
I
made
an
appointment
with
a
reputable
specialist,

and
had
a
lumpectomy
and
radiation.
One
year
later,
I
am
cancer
free.

My
husband
died
on
Jan.
15,
2026.
Because
of
Emma’s
message,
I
am
alive.
And
I
got
to
thank
her
for
that
at
a
talk
I
attended
where
she
was
the
featured
speaker.
She
is
beautiful
and
kind,
and
like
Diane
and
me,
she
looked
exhausted
and
slightly
frazzled.
However,
she
is
using
her
privilege
(as
she
said
herself)
to
lobby
and
advocate
for
research
into
FTD
and
support
for
caregivers.
And
for
that,
we
can
all
thank
her
for
saving
lives.