For hours after his legs were amputated, Dennis Prothero stared at the walls of his empty hospital room — unsure if he could muster the courage to look at how much of his legs were left.
As evening fell, Prothero finally pulled up the hospital sheets. As he feared, his legs had been reduced to rounded stumps — severed just below the knees. "Nothing can prepare you for a discovery like that," said Prothero, 68. "It was devastating."
Prothero, who was paralyzed after being hit by a drunken driver in 2004, was in his wheelchair up to 24 hours a day after losing most of his vital caregiving support this summer, the consequences of a shortage of care workers that has reached crisis levels across the state. The constant rubbing against the chair caused dangerous pressure sores on his feet. Left untreated, the sores festered and became severely infected. An emergency amputation on Oct. 21 — about three months after his personal assistants quit or reduced hours — was the only way to stop the spread, doctors determined.
Before the crash, his legs helped carry him through burning buildings as a small-town firefighter and propelled him on long-distance races.
"My brother sacrificed his limbs to the caregiver shortage," said Gayle King, his older sister.
While the extreme outcome of Prothero's case is unusual, it reflects the reality facing thousands of Minnesotans with significant physical disabilities who depend on state-funded caregiving services to live at home. For this vulnerable population, the shortage of home care workers has reached a crisis point, say disability advocates and home care agencies. Some have been forced to go without care for weeks or even months at a time — jeopardizing their health and independence. Still others have been unable to fill empty shifts — making it difficult for them to get regular help with basic tasks, from bathing and dressing to being transferred from wheelchairs.
Statewide, vacancies for home health care jobs ballooned 60% to nearly 15,000 at the end of 2021, up from 9,373 vacancies at the same time in 2020, according to the most recent state workforce data. The median wage for direct support positions has inched up to about $15 an hour, but is still too low to attract workers from less-demanding jobs. Fully a quarter of home health positions are going unfilled, according to a survey this summer by a state trade association.
"The reality is, we don't have enough people and the pay is too low," said Kathy Messerli, executive director of the Minnesota Home Care Association, which represents agencies that provide hands-on care to about 30,000 older Minnesotans and individuals with disabilities in their homes. "There's no question it's a crisis."
Prothero thought the surgical removal of his legs and a 12-day hospital stay would trigger more help. Instead, he was sent back to the Stillwater apartment where the infection occurred and without any additional staffing. Almost immediately, he resumed his search for a personal care assistant, or PCA, calling and emailing every home care agency he could find. Most agencies declined once he explained that he was a quadriplegic with high medical needs and relied on Medical Assistance, the public insurance program that caps reimbursement rates at $19.60 an hour for home care providers.
"You could spend all day, every day on the phone trying to find a home care worker — and still come up empty," said Prothero, a former volunteer fireman and U.S. Army veteran. "So [hospitals] send you home and hope for the best."
Even for someone who relies on a wheelchair, the loss of limbs can disrupt one's balance. On his first day home from the hospital, Prothero nearly toppled out of his wheelchair and smashed his face against his refrigerator door. He had forgotten that he no longer had legs for support when he reached for things. The mishap left him with a badly bruised lip.
"My entire center of gravity has changed," said Prothero, as he poured food for his yellow Labrador retriever, Summer. "It's disorienting."
As a quadriplegic, Prothero has lost most of the feeling in his arms and legs. Even so, he suffers from a condition known as neuropathy, which causes a sharp prickling sensation in his limbs. To his surprise, Prothero said his brain is still receiving this sensation from his amputated limbs — a phenomenon sometimes referred to as "phantom pain" by neuroscientists. "I still have feeling in my legs even though they're not there," he said, "which is hard to wrap my head around."
Prothero primarily needs help for several hours in the morning and several hours in the evening, but his routine was upended in July when the personal care aide who helped him on the evenings and weekends departed for a higher-paying job. Soon after, his other longtime caregiver, Julie Britton, 50, had to cut back her hours because of health problems. Suddenly, Prothero was immobile for long stretches of the day and night, with no one to help him in and out of his wheelchair.
"More than ever, I'm really afraid for anyone with complex medical needs who lives alone," said Dena Belisle, president of the Minnesota First Provider Alliance, an Oakdale-based association of personal care assistance providers. "If they don't have family support ... then they are often just one minute away from going into a nursing home or a group home."
Like many home care workers, Britton has had to teach herself how to provide complex care. Until last week, she had never provided wound care for an amputee. To learn, Britton watched a video — taken on Prothero's smartphone — of nurses at Regions Hospital cleaning and wrapping surgical gauze around his rounded stumps. Now Britton is trying to replicate this professional level of care from Prothero's bedroom, while making $12.80 an hour as a PCA with no benefits.
Many of Prothero's family members have stepped forward to help — transferring him to bed some nights and calling home care agencies for help.
"In a country where we should have the best medical care, we seem to go out of our way not to take care of people," Prothero said. "Taking care of our disabled and our seniors is just not a priority."
Despite his ordeal, Prothero was in good spirits last week after returning home from the hospital. As he sat in bed, he cracked morbid jokes about his surgery — "Well, I used to be five foot eleven!" — and about using his severed limbs as table legs. He was also thankful that the surgery had stopped the infection's spread, which had caused his feet to become so swollen they resembled "Hobbit feet." In keeping with his offbeat humor, the license plate on his accessible van reads "QUADROD."
"I know that I'm not the only person in this position, though my situation may be more," he said, pausing as he searched for the word. "Drastic."
