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Caregiving With a Smile
by Nicole Savini
It’s an ordinary day and my
mom and I are struggling
to get her dressed. She just
can’t seem to convince her brain
to put on the pants. And I’m losing
patience. I’ve tried negotiating, I’ve
tried explaining, I’ve even tried
bribing (“If you put on your pants,
we can get ice cream!”), but it seems
like she will never get in those pants.
I reach for the last tool in my bag of
tricks: The Hokey Pokey.
“Okay, Mom, here goes,” I belt out.
“You put your right leg in….” She
stares at me. I try again. “You put your
right leg in….” Nothing. If you have a
loved one with FTD, you know this
look. She’s just not there. “Mom!” I
plead, “You put your right leg in… and
you shake it all about.” I jump around
shaking my leg and singing, “you do
the hokey pokey….” The truth is, I’m
desperate. And then it happens.
My mom cracks a smile and starts
to laugh. I see her wake up. I can
almost see the neuro-whatever-youcall-
thems firing in her brain. She’s
back and she’s with me. Mom tells
me I look silly, and (hallelujah!) picks
up her right leg, shakes it all about,
and shoves it into her pants. Victory!
Okay, well, not exactly. There’s still
the left leg. Mini victory!
I’ll be honest: The Hokey Pokey
doesn’t always work. And I am
certainly not always dancing
and singing with my mom. But
having that light moment erases
the frustration I felt just a few
minutes before. It gives me a burst
of energy, which helps me face the
next challenge (in this case, the left
leg). And, for a moment, I am with
my old mom, the one with a sharp wit, who can clearly see that I look
ridiculous. When you’re dealing with
a disease like FTD, and you’ve been
told again and again that you can do
nothing, that is definitely something.
Countless studies have analyzed
the health benefits of laughter.
Laughter boosts levels of endorphins,
the body’s natural painkillers, and
suppresses levels of epinephrine,
the stress hormone. Research even
claims that laughter can be as good
for your heart as exercise (yes, you
can skip the gym to watch Seinfeld!).
But if you’re a caregiver of someone
with FTD, it can be really difficult to
see what’s so funny. Laura Federico,
LMSW, FTD support group leader
and care consultant for the New York
City Chapter of the Alzheimer’s
Association, says it can be helpful to
separate yourself from the “nuts and
bolts of the disease.” She says, “If you
see an opportunity when you can
laugh, please do.”
Melissa G.’s father has FTD and
requires total care. “Humor keeps
me sane,” she says. “When I brush
my dad’s teeth, brush his hair, clip
his nose and ear hairs…I often make
myself and my dad laugh when I sing
the song from “The Wizard of Oz”
when they are all getting primped.
“Snip, snip here, snip, snip there and a
couple of tra la las….”
FTD is not funny. But that doesn’t
mean there’s nothing to laugh about.
Federico says, caregivers should allow
themselves to recognize that “some
things are just funny. And the person
with dementia recognizes that it is
funny as well.” Case in point, my
mom has recently become convinced
that my sister and I are the most beautiful and coveted women on
earth. No matter where we go, no
matter how single, married, or old
a man may be, she commands his
attention and declares “She’s beautiful
isn’t she? I made her.” While
excruciatingly embarrassing, we have
to admit, it’s also hilarious.
When my mom was diagnosed with
FTD, my father told her, “We’ve
laughed every day up to this point,
so why don’t we just laugh our
way through the rest of the way.”
My family followed his lead and
we’re healthier and happier because
of it. After a recent run-in with
police involving dairy theft, my dad
remarked, “Yeah, she stole an icecream
but it’s not like she poked a kid
in the eye with the end of a Nutty
Buddy!”
So some humble advice: When
faced with a moment where FTD is
winning the war on your wits, take
a moment and follow me (singing,
please!). You put your whole self in
and you shake it all about. You do the
hokey pokey and you turn yourself
around, and you smile. Finding your
smile will help you cope, it will push
you forward, and it will make you a
better caregiver. And that’s what it’s
all about (clap, clap).
Nicole Savini is a Field Producer for
Comedy Central’s The Colbert Report.
Her mother Kathy, age 65, has FTD.
Nicole attends a caregivers support group
provided by the Alzheimer’s Association,
New York City Chapter.
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