Twin caregiver lives through the ordinary before, then the unfathomable after

The twin born first — Erin Patricia Lewis, by a minute! — was the fierce sister. The protective sister. The outgoing sister.

The sister who left first.

“I will greatly miss every single second of being a twin,” Sarah Rasby said at the funeral last summer. “I have so much gratitude for everything she did for me as a sister, even during the last few years; what she gave to me was immeasurable.”

Erin died June 24, 2022, more than three years after a devastating cardiac event left her alive but severely disabled.

She left behind her son Teddy, an inquisitive 5-year-old, and her partner Ty Prucha, a long-ago college classmate turned fiance. She left behind her mom and her older sister. And she left behind Sarah, her other half.

When Sarah married Nick Rasby in 2012, she told him: You’re marrying both of us.

“She was everything to me,” Sarah says. “She was my go-to person for everything.”

Sarah turned 40 in February. She lives in south Lincoln, in a mid-century ranch with Nick and their sons, Cohen, 10, and Bennet, 7.

She juggles parenting and teaching yoga and working on her Ph.D. at the University of Nebraska-Lincoln.

Her research field: Caregiving.

There is an apt name for the kind of caregiver that Sarah and her twin’s other loved ones became on Monday, Nov. 12, 2018: Sudden Caregivers. 

“Research has yet to deeply recognize or explore the experience of ‘sudden caregivers,’” Sarah wrote in her dissertation proposal.

Sudden Caregiver: The ordinary before and the unfathomable after. 

What to call what happened that night in 2018? An accident? An incident? The 12 Minutes That Broke Their Hearts?

For weeks, Erin hadn’t been herself. She wasn’t sleeping well. She had panic attacks – heart racing, palms sweating. It had been a year of change. Becoming a mom, starting a new job, building a dream house with Ty and coping with ongoing grief for her dad, who’d died of colon cancer the year before.

She’d been worried enough to see a doctor and get hooked up to an EKG. Everything checked out.

Sarah replays that etched-in-time Monday evening. Erin calling Ty from the grocery store to say she couldn’t drive home, that she’d had a panic attack in the parking lot.

Ty picking her up with Teddy in the backseat and, as they approached home, seeing her body go limp. The frantic drive to the hospital ER.

Sarah was bathing her boys when the call came. At the hospital, a nurse called them into a private room: Erin hadn’t been breathing when she arrived and doctors were working to revive her.

“I ran out into the hallway hyperventilating and screaming ‘NO!’” Sarah remembers. “‘No, no, no, no!’”  

She slid down the wall, her hands and feet cramping. 

She recognized the feeling. I’m going into shock.

Breathe, she told herself. Breathe.

It’s what she teaches others now, part of her research on the effects of self-compassion and mindfulness for family caregivers, a huge and hidden population in America – estimated at 53 million; many of them women. And many who struggle with isolation, anxiety, depression and their own declining health.

It’s a staggering number, Sarah says. Those 53 million Americans need help.

“What I think is what’s needed most is a change in the social perspective that to be a caregiver means you have to go it alone.”

It’s why Sarah secured funding to screen a documentary on June 28, lining up sponsors and a panel of caregiving experts and making it free to attend.

“I’m pushing for so many people to come to the film screening because caregiving will affect you at some point.”

And you can’t predict when that will be.

“Never in my life did I think I’d be a caregiver for my 35-year-old sister.”

***

All the emotions lived in this new world. 

Hope next to heartache, optimism alongside despair. 

“You ARE healing, moment to moment,” Sarah wrote in her journal, weeks after the accident. “You are on your way back to being a mama at home with Teddy.”

Two months later: “I love you so much, Erin. I can’t imagine how difficult this has been for you lately. My heart is so heavy.”

Erin’s diagnosis was dire. A global ischemic injury – death of brain cells due to lack of oxygen to the brain.

Those panic attacks? Likely heart arrhythmias culminating in a perfect, near-fatal storm, Sarah says.

Erin spent months at Madonna Rehabilitation Hospital. Her mom and big sister Maggie took her to New Orleans for eight weeks of specialized therapy. Ty fixed up a small house and Erin moved in with round-the-clock care. The pandemic came and a hard road got harder. 

For the last year of her life, Erin lived in a nursing home in Tekamah, close to their mom.

“My mom was a fierce advocate for Erin,” Sarah says. “Ty and other family members were always on the same side of that. I didn’t do this alone.”

But when everything changed for Erin, everything changed for Sarah.

She didn’t go to work – couldn’t bear to go to work – for six weeks, and eventually sold her share in a Lincoln yoga studio to devote more time to her twin.

She was her sister’s power of attorney. She advocated for Erin with her care teams and doctors. She dealt with insurance companies. She pushed for more treatment and better options.

She stayed by Erin’s side. Held her hand, played her music, combed her hair. The twins watched old movies together and reruns of “Friends.” Sarah recounted tales of their college exploits, and Erin laughed.

In late 2019, Sarah was asked to moderate a panel at the Rosalynn Carter Institute for Caregivers in Atlanta and, amazed by the support work started by the former First Lady, began reimagining her own life. She started her doctoral program while Erin was still alive and nearly quit in the months after she died.

Friends and faculty pulled her through.

She’s focused her research on the value of self-compassion techniques for caregivers and removing stigma around disability. In June, she led a six-week self-compassion series for caregivers at Madonna and is collecting data on its effects.

“She’s driven to do the work well and she’s very inquisitive,” says Holly Batton-Bowers, Sarah’s co-advisor and co-investigator for the series. “It’s exciting to see her take this work in a direction it hasn’t been before.”

Sarah had a foundation for her work. Her father spent his career working at a sheltered workshop for people with developmental disabilities in Omaha. 

“He treated them just like he’d treat anyone else. He instilled in us that people with disabilities deserve attention, positive relationships and value.”

Eventually, Sarah saw beyond the heartbreak  – Erin losing so much, her home, her voice, her ability to eat, drink, walk, talk – to appreciate the new version of her sister.

“I still had my sister and I could tell her full being and soul were still very much there. And I loved her.”

A friend of the twins, part of Erin’s army of helpers, witnessed that love.

“The bond of twins, I don’t think anyone who is not a twin can understand,” Katy Martin says.”You’re always fighting for your sister. Keeping her close to your chest.”

***

Sarah and Erin shared a womb, but they had separate cribs. By the time they could climb they often ended up nestled together for the night.

Two peas.

Sarah, the quiet one; Erin, the social one.

The twins did everything together growing up, from T-ball to talent shows. They weren’t identical but close enough to make people look twice.

Mom called them the Twinks when they were small, and it stuck. Erin outweighed Sarah by a pound at birth and never gave up her role as mother hen. 

“She was always looking out for me,” Sarah says. “She always carried so much confidence for me.”

When they were in sixth grade at Holy Ghost Catholic school in Omaha, Sarah ran for class president.

There was a recount. It turned out there were more ballots than there were students – and Erin had been in charge of counting the ballots. Then there was the year Sarah couldn’t believe her long jump number at track and field day. She looked up, and there was Erin, winking at the judges’ table.

Erin looking out for Sarah again and wanting her to win.

Sarah wanted Erin to win, too. 

The twin born second – only by a minute! – loved Erin, the essence of Erin, the Erin who lived so bravely for so long after Nov. 12, 2018.

In the early months, Erin could repeat a few words. I. Am. Beautiful, Sarah would say. I. Am. Beautiful, her twin would answer. I. Am. Strong. I. Am. Strong. I. Am. Love. I. Am. Love.

What’s your name? Erin. 

What’s your baby’s name? Teddy.

She could answer Yes and No. 

Erin smiled when Teddy walked in the room. She laughed at Ty’s jokes. She cried. 

She knew her people, the twins’ friend Katy says. “Or maybe it was more that her heart knew.”

Time passed and many friends stopped visiting, not knowing what to say. Erin began having seizures and ended up in the hospital five times with kidney infections. Her muscles were in a constant state of contraction. Sarah saw the pain in her eyes. The trickle of words slowed.

“During Covid, it stopped,” Sarah says. “The isolation caused further decline.”

When Sarah couldn’t see her sister in person, she FaceTimed her, Erin’s phone mounted to the wall and set to automatically answer as a video call.

 Hey, Sissy. I love you.

“Erin would just light up when she’d hear Sarah’s voice,” said Tammy Ellis, Erin’s hospice nurse. “You could tell she and Sarah had that connection where she knew Sarah was always going to be there for her.”

Sarah prayed with Erin in the morning and recited the Hail Mary, words carried over the ether, every night.

She had become the mother hen. Her sister’s protector.

She went back to school for Erin and for all of the people who had an Erin in their lives.

“All of the work I do is because of Erin and my caregiving experience for her.” 

It’s been a year now since Erin passed. 

On June 24, Sarah and her family will gather with high school friends for a cookout.

She still feels a little numb. Deep wells of grief followed by periods of peace. Joy stirred by a memory. She feels sadness for Ty and Teddy and the future they lost.

She’s waiting. Letting herself be; treating herself with compassion.

She’s breathing.

If You Go:

A free screening of the documentary “UNSEEN” will air at 6 p.m.  June 28 at the Mary Riepma Ross Center, 313 N. 13th St., in Lincoln. The film will be followed by a panel discussion featuring caregiving experts and State Sen. Anna Wishart.

For tickets, visit https://theross.org/events/unseen/ 

For more information, contact Sarah Rasby, srasby2@unl.edu