Overwhelmed by the demands of caregiving, Quette dialed 911 when she found her teenage son downstairs in their kitchen struggling to breathe.
He had rolled his wheelchair to the oven to keep himself warm as he tried to regulate his temperature, she recalled, and was drenched in sweat from an apparent infection.
In that moment, Quette knew that she and her son’s grandmother could no longer meet his medical needs on their own at their Illinois home just outside St. Louis. He had become paralyzed when he was shot in 2023, and, despite their efforts, they struggled to take care of him. But she never imagined that her quick call for help that day would turn into a months-long hospital stay for her son — even after he was well enough to be discharged.
She said their family had been begging hospitals for a home health aide to help care for his wounds, only to be accused of neglect. “They were like, ‘Well, y’all almost killed him,’” she recalled officials telling her. KFF Health News agreed to use only her nickname to protect the safety of her son.
“I had to give up. I just couldn’t take care of him anymore,” Quette said. “It was just a lot on me. It was so …