A nursing shortage — driven by the pandemic — has made life miserable for parents with profoundly disabled children. “What if I’m so exhausted that I make a mistake?”
It was 9 a.m. on a Sunday in May, and Chloe Mead was already worn out.
In her living room, she cradled her 7-year-old son, Henry, supporting his head with one hand and helping him toss a ball with the other, careful not to disturb the ventilator that was keeping him alive. A nearby monitor tracked his blood-oxygen levels and a pump was at the ready should his tracheotomy tube need cleaning. In the corner, her 4-year-old daughter was building a pillow fort.
“I need, like, five extra arms,” she said.
Ordinarily, she wouldn’t be by herself. Since infancy, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, has had intensive, round-the-clock nursing at home, with Ms. Mead and her husband serving as fallbacks when a nurse unexpectedly cancels a shift.
But the recent shortage of home-care nurses has forced the couple, who live in Queens, to handle longer and longer periods on their own — as many as 36 hours at a stretch. That morning, her husband, Andy Maskin, was catching up on sleep so he could take that night’s late shift, from 2 a.m. until 7 a.m., when he begins his own workweek.
A short term solution could be to mobilize volunteers who could assist individuals and families at home, in places where there either aren’t enough avalo medical staff, or there aren’t enough medical staff to begin with.