MADISON, Wis. — When Janet Wiegel talks about her sister, Margie, you can hear the joy in her voice.
“My sister Margie was the strongest person I know,” she said.
But with that joy comes pain in remembering Margie during her final moments.
Margie lived in a condo with her roommate and had an in-home caregiver through Options in Community Living.
Margie’s caregiver contracted COVID-19, and two days later, Margie tested positive.
Wiegel said the hardest part about Margie being sick is that at 72 years old, Margie is mentally and physically handicapped and non-verbal. Because of her disability, her brain functions at a 4-5-year-old capability. Due to the hospital’s COVID regulations and the fact that Wiegel is a long-hauler of COVID symptoms, no one was allowed inside the hospital with Margie to help her communicate with staff.
“She couldn’t necessarily communicate what was hurting, what she needed,” Wiegel said.
Wiegel’s only way inside the hospital was over the phone. She helped translate Margie’s responses and found out that Margie was battling COVID-19 and kidney stones at the same time.
Margie’s situation is just one of many. Laura Gates, the community support coordinator for Options in Community Living, was one of several people who went outside the duties of their job description to help Margie along the way and make sure she was well looked after in her caregiver’s absence.
“It impacts a lot of people that we support,” Gates said.
Options in Community Living has around 300 staff members. Gates said at any given time, at least 50 are in quarantine. Staff members are constantly filling in the gaps and even quarantining in patients’ homes to take care of them when they contract the virus.
“I am absolutely in awe of my coworkers and the workers who stayed,” Gates said.
Despite the above and beyond care, Margie ended up at UW Hospital for treatment three different times.
“They intubated her at that point and that was something we knew she would never want and her quality of life would never be the same,” Wiegel said.
Doctors removed the tubes, and Margie’s heart stopped.
“My husband and I were allowed to be there after they removed the intubation tube and be with her while she passed,” Wiegel said. “We talked about her strength and her love and her joy. How we were so much better for knowing her. Even though she couldn’t respond or hear us, I think she knew we were there.”
“She was an amazing individual,” Gates said. “It broke our hearts. She leaves a huge hole. The death rate is three times higher for people we support, people with disabilities than for the average population.”
Even though Margie isn’t here to thank the work that her caregivers and frontline workers did, Wiegel could imagine what her sister might have said.
“These people are caring for them every day with limited resources,” Wiegel said. “There’s hundreds of them to support even just a few people. How important they are in those people’s lives cannot even be stated.”
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