“He started to improve,” Ronnie said. “Once I was with him everyday, he began to get better!”  In fact, he improved so much, the nursing home reclassified him out of end-of-life status, although he remained under hospice care, which meant Bill no longer qualified for the exemption allowing visitors, and it was back to “visiting” him through a window.
 
“I said to myself: ‘I can’t take this anymore. I’m bringing him home,” she said.  The nursing home didn’t think she could handle his care but she knew she could if she had a little help from Medicare’s hospice benefits, along with a Medicaid program that pays for home health services, (referred to as the Long-term Care or LTC Waiver). Like so many seniors in need of long term services and support, Bill qualifies for both Medicare and Florida’s LTC Medicaid program.
 
Ronnie fearlessly navigated the complex and confusing application process for Medicaid LTC Waiver services, where a request was made for 42 hours a week of assistance from  trained aides who could move Bill from a lift into a specialized wheelchair, and clean and feed him. In part, because the Medicare and Medicaid programs are not well coordinated, the request for Medicaid home health services was denied.
 
She appealed and again was denied. Her request was denied a third time. 
Determined to be with her husband in his final days, she brought him home anyway, managing with hospice care aides three times a week, private aides, a few kind neighbors and her own perseverance. She puts in 12 to 15 hour days and often goes weeks without leaving her house.
 
“People don’t understand the magnitude of what needs to be done,” Ronnie said. She logs two miles a day just walking back and forth in her house, attending to bedsores, feeding, and dispensing medications. “It goes on and on and on. I’m fairly strong and I’ve mastered a few things, like changing his bedding and giving him nourishment and medications through his feeding tube. But I can’t do it all.”
 
Covid has complicated matters. The private aide she hired also works at a nursing home and is often exposed to virus flare-ups at the facility. Ronnie won’t let her come when that happens. Private agencies charge upward of $35 an hour, minimum half-days, to provide on-call aides, which Ronnie can’t afford anyway.
 
“If I got home health aides, my life would be just a little better. It’s the tiny, tiny things in life I miss. I miss walking, going to a yoga class, even going out to eat every once in a while,” Ronnie said.
 
“It’s OK, I want to help him…” she said, her voice trailing off as tears begin.  “He belongs in our  home. We belong together. I just need a little more help. I just want to be with him in the time he has left. And he doesn’t have that much time left.”