Rising up in Omaha, Nebraska, Sarah and Erin Lewis had been the kind of twins who shared one another’s secrets and techniques.

“We had been finest mates,” Sarah (now Rasby), 40, tells PEOPLE solely. “We knew every thing about one another.”

The twins went to the identical highschool and school, they usually each moved to California for work. Though they lived in several cities, they spoke every single day. “Erin was my go-to particular person,” says Sarah.

Just a few years later, they each ended up again in Nebraska. Sarah was residing in Lincoln and was married with two children, then 7 and 10. She was co-owner of a yoga studio. Erin moved house to Omaha to care for their father and stepmother who had each been recognized with most cancers. Quickly she had a fiancé, Ty Prucha, and a child on the way in which.

However on November 12, 2018, Erin suffered a sudden cardiac occasion after a visit to the grocery retailer.

“It was on a Monday evening and I used to be bathing my children,” Sarah recollects.“Life fully modified once I acquired that cellphone name.”

Erin was nonetheless a brand new mother when she collapsed — her son Teddy had simply turned one.

“As a result of she was with out oxygen for 20 minutes, she had a extreme anoxic mind harm,” says Sarah. The neurological harm left Erin severely disabled.

“She couldn’t talk a lot anymore,” Sarah recollects. “Originally she would say sure and no, but it surely was like — and I do not love this time period — when somebody is trapped of their physique. She wasn’t paralyzed however she couldn’t transfer in any respect.” 

The affect on Sarah and the remainder of their household was fast and far-reaching.

“The world stopped shifting for me,” says Sarah, who was listed as Erin’s energy of lawyer. “I by no means thought in 1,000,000 years would I be caregiving for my sister on the age of 35 or making critical choices for her life. It fully modified the course of every thing we had been doing professionally, personally, in our lives. I grew to become targeted on my sister and her wants.”

Erin’s fiancé Ty  helped along with her care, as did the twins’ mother and older sister, who lived an hour away. “It was all arms on deck,” says Sarah.

However she performed the most important function. “I attempted to get again to work — first after six weeks, then three months, six months, however I simply could not do it. I needed to be there for my sister.”

Sarah was making the entire choices, navigating the paperwork of medical care, insurance coverage, authorized points, caretaking services. She desperately needed to search out an applicable place for Erin to reside the place she might obtain one of the best care.

“We had been on the lookout for a great residing scenario, however there is not something that exists like that,” she says. “I believe Erin in all probability lived in at the least 12 completely different locations, simply making an attempt to determine methods to get her wants met.” That included rehabilitation facilities, nursing properties, at house along with her household, and ultimately hospice.

Erin died in June 2022.

“Trying again, I believe I used to be actually preventing for the worth and the integrity of her life, for the person who she was,” Sarah says. “And even with monetary assets, it was extraordinarily onerous. Systematically there is a greater subject.”

“Simply making an attempt to get companies for somebody that is not in a facility…” she trails off. “High quality care is difficult to search out. That is why the caregiver function is so pivotal. Somebody must be with them on a regular basis to observe every thing.”

The expertise impressed Sarah to get her Ph.D. in International Household Well being and Wellbeing at College of Nebraska-Lincoln, the place she conducts qualitative analysis on caregivers, together with problems with self-compassion. “My analysis is making an attempt to alter the social isolation and loneliness that comes with being a caregiver,” she says.

By means of her work, she has linked with the Rosalynn Carter Institute for Caregivers, a household caregiving advocacy group began by the previous First Girl, who, at 12 years previous, helped take care of her ailing father when he was recognized with leukemia.

Carter is thought for a quote that illustrates the universality of the caregiving expertise: “There are solely 4 varieties of individuals on the planet — those that have been caregivers, those that are presently caregivers, those that will probably be caregivers, and those that will want caregivers.”

In actual fact, there are greater than 53 million caregivers – not together with mother and father – within the U.S. who want help.

RCI designs and develops evidence-based applications for caregivers and has lately launched the 4Kinds community, marking their first-ever nationwide grassroots advocacy . 

For Sarah, connecting with RCI was life-changing. “I by no means actually considered myself as a caregiver,” she says. “I simply thought that is what you probably did for somebody that you simply cherished.” However RCI gave her a clearer image: “It was similar to this big aha second, like, I really feel fully seen.”

It’s not misplaced on Sarah how her story parallels Carter’s. “Being a caregiver simply fully adjustments you in so some ways,” she says. “It might probably set your life on a unique path.”

Carter, who turns 96 on Aug. 18, determined to dedicate a lot of her life to advocating for household caregivers and utilizing her platform to additional the message. Sarah, after residing although her personal caregiving expertise, determined to develop into a caregiver advocate as properly.

“I need to proceed this analysis and this legacy as a result of it has been so life altering and significant. I need to honor Erin and our experiences — as a result of they may by no means depart me.”