SPRINGFIELD, Ill. - Caregivers from across the country are in Washington D.C. continuing their fight for the rights of people living in long-term care facilities.
Carrie Leljedal and Julie Lewis from Illinois have been busy over the past 48 hours making sure their voices are heard. Both women met with Rep. Darin LaHood (R-Peoria) Tuesday night. They also met with staff for Rep. Rodney Davis (R-Taylorville).
Leljedal and Lewis stood alongside essential caregivers and other advocates during a press conference Wednesday morning about the Essential Caregivers Act. Some explained how they watched their loved ones deteriorate through FaceTime or window visits.
Advocates stressed this should never happen again.
"I made calls for compassionate care visits. I was denied because my mother wasn't dying," said Karla Abraham-Conley, an advocate from New York. "There's a distinct difference between compassionate care and end of life. Our nursing homes, our long-term care facilities are refusing to acknowledge that."
The Essential Caregivers Act could allow residents to designate two caregivers. Those family members or close friends could then see them for up to 12 hours each day during a public health emergency. Caregivers would have to follow all health and safety guidelines set for staff at long-term care facilities.
"He cannot go through this again"
There's been tears, hugs, and moments to reflect on while advocates push for House Resolution 3733. Leljedal highlighted some of her son Lynn's struggles during a roundtable discussion Wednesday afternoon. We introduced you to Carrie and Lynn earlier this week.
She explained many residents are still isolated in long-term care facilities limited to one visit per week that is cut off after half an hour or less. Carrie is glad Clinton Manor, Lynn's facility in the Metro East, allows frequent visits again.
Still, she never wants that taken away.
"What he just went through is not a life. I didn't keep him alive to imprison him," Leljedal said. "We have to fight, we have to have this bill passed. My son could live in a facility for another 50 years and he cannot go through this again. And neither can his mother."
Rep. Claudia Tenney (R-New Hartford) is the lead sponsor of the Essential Caregivers Act.
While the resolution was introduced earlier this month and has nine co-sponsors, there is no language filed at this time. That means caregivers will still have to wait longer before Congress votes on their plan.
Lynn can't wait to see the plan approved. His mom means everything.
"She's the most important person in my life," Lynn said Monday. "Always has been, always will be."