Seattle Poet Uses MacArthur Grant Money To Give Vacations To Exhausted Caregivers

Nov 25, 2014

Five years ago, Seattle poet Heather McHugh got some unexpected news: She had been awarded a MacArthur Foundation “Genius Grant” of $500,000.

For the next two years, she tried to figure out what to do with the money. The grant comes with no strings attached, but McHugh says she didn’t want to spend it on herself.

“Nobody deserves that kind of money, and I think something in me was chastened by being awarded such a big amount of money,” she said.

Then, her godson and his wife had a baby with severe disabilities, and McHugh says she kept thinking about how stressful that would be for them raising a daughter who would never walk, talk or be able to feed herself.

“It was obvious to me when that baby was born that in 10 years, they were going to need a break,” she said.

So McHugh took the money she received and used it to start a nonprofit called Caregifted, awarding vacations to people who have spent a decade or more taking care of a family member full-time.

The Challenges Of Caregiving Full-Time

One of the recipients is Tricia Elsner, a single mom of triplet 17-year-old sons living in Federal Way.

Outside the house she shares with her sister Kathy there’s a sign propped up that reads: “Autism Awareness. 1 in 50 children. Let’s find some answers.”

Elsner with her son, Conner.
Credit Ashley Gross / KPLU

Elsner says she’s not sure that statistic is accurate, but one thing is clear: for her, it’s not one out of 50 kids, it’s two out of three. Her son Colin doesn’t have autism, but both Conner and Ian do.

Ian is not able to talk much. Conner can talk, but still has a hard time expressing himself.

On a recent afternoon, the boys roll in from school, or in Conner’s case, a job training program, shrug off their backpacks and head for their rooms.

“Did you have a good day?” Elsner asked Ian.

He answered with one word: “Help.”

He wants help getting out of a special harness he wears that attaches inside the bus because he won’t wear a seat belt. Elsner unzips it and Ian retreats to his room to watch "A Muppet Family Christmas" on his tablet.

He curls up on the bed, and Elsner leans over him, speaking slowly.

“Mom cleaned your room really well, okay? So no peeing on the floor and keep your clothes on, okay?” she said.

She explains that even though he knows how to use the toilet, he sometimes just doesn’t feel like it and urinates on the floor.

The Tantrums Of Almost-Grown Men Who Can't Communicate

Most parents are able to get through toddler temper tantrums and toilet training because there’s an end in sight. For Elsner, there hasn’t been an end.

And now, the tantrums she faces come from almost-grown men — her sons who can’t communicate what’s bothering them.

Conner mostly doesn’t want to be around Ian, but that’s unpredictable. Sometimes he’s fine with his brother.

“He’ll go over and say, 'Hug Ian, Kiss Ian!’ and hug Ian and give him a kiss and then go back to his room,” Elsner said. “And other times he comes in and says, 'Oh no, Ian’s home, no Ian! Ian leave the house.’ And I’m like, 'He’s fine. There’s nothing to be upset about.’ But he can’t tell us what the issue is.”

She and her sister do what they can to keep the peace, but things can spiral out of control. The knives are kept locked away in a cupboard. She only ever uses the back two burners of the stove.

“Kathy and I have both been knocked to the ground,” she said. “Conner has kicked me across the room before, slams his head into my head. Ian mainly hurts himself.”

There’s a team of people who come and help, but when they’re there, Elsner has to use the time to do things like clean pee off the floor. On a good day, she’s able to squeeze in a nap or do some coursework toward a bachelor’s degree in teaching.

She’s exactly the kind of person poet McHugh set out to help.

'They Ask For The Simplest Things On Vacation'

“I can see how hard some lives are and how much they deserve tribute,” McHugh said. “They do it for their families, they do it out of love, but what they do benefits everybody and nobody’s thinking about it. Nobody’s waving thank you at them.”

Heather McHugh
Credit Ashley Gross / KPLU

So McHugh used the MacArthur grant money to give caregivers week-long getaways in Victoria, B.C., Maine and Napa Valley. She accompanies many of them and acts as a concierge, fulfilling their needs, playing tour guide and offering a listening ear.

“They ask for the simplest things on vacation,” she said. “They want to go for a walk when they want to. They want to read a book.”

McHugh is 66 with short-cropped hair and a bubbly manner. She talks with as much enthusiasm about her new espresso maker as she does about German philosophers.

And she’s trying to connect her background in the arts to her new calling heading a nonprofit. (She’s still bemused by that role. “I find it really hard to endure the word 'scalability,’” she confided. “There’s a whole lot of nonprofit language I had never heard before.”)

She’s wrangled some big-name writers (poet Billy Collins, novelist Rebecca Wells and many others) to donate their time to read aspiring authors’ manuscripts. The one-day fundraiser will be held on Nov. 25.

And this work has inspired her own poetry. She’s written a poem called “Caregivens” in which she drew from the unique vocabulary the caregivers use in their application essays.

A Respite To Clear Away 'A Feeling In My Chest Like A Big Stone'

So far, Caregifted has awarded getaways to almost 30 caregivers. Tricia Elsner went to the fishing village of Eastport, Maine last year for her trip away.

She did some whale watching and kayaking, had a massage and made herself a smoothie every morning to enjoy on her deck overlooking the harbor. In the evening, she watched the Food Network to her heart’s content.

It was the first time in many, many years that I only had to worry about myself.

“It was the first time in many, many years that I only had to worry about myself,” she said. “I didn’t have to worry about getting anybody their meds, if anybody was going to tantrum and set anybody off. It was just unbelievable.”

Now a year and a half later, she’s back to her regular life putting the needs of her sons first.

On this afternoon, she pushed Ian gently back and forth in a hammock swing that hangs from the doorway. They chatted, but it’s a conversation comprised only of sounds.

Ian says words that sound like “oy,” “doh” and “day.” Elsner repeats each one.

“We have conversations that I don’t know what we’re talking about, but we talk anyways, don’t we, Ian?” Elsner said.

She said even though the trip was short, it’s still having an impact on her ability to cope.

“After I got home, I realized that there had been a feeling in my chest like a big stone or rock that never went away,” she said.

She says after the trip, that feeling was gone. It hasn’t been an easy time since she came back — one son had to be hospitalized, and another had to leave school. But Elsner says that rock that used to be in her chest still hasn’t come back.