What’s So Funny?  

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.