Jill Masters keeps a tidy house. That’s not unusual in her Antelope neighborhood. What is unusual is that she does it while being the sole caregiver for her disabled adult son, Nick, 26.
Luckily, Nick is easygoing and good-humored. He loves comic book superheroes, especially Iron Man, and wears a shirt that says, “Trust me – I’m a superhero.” “You’re my superhero,” his mom said as she squeezes his hand. “You really are.”
He says he is looking forward to the holidays, including visits from his sister, who lives in Pennsylvania, and his grandmother. These have become even more important in his limited world since his father died from sepsis during a colonoscopy in 2007. Jill’s world, too, became more limited since she no longer has someone to share the daily routine of caring for someone who cannot eat or move well enough to function independently.
How does she do it? “Mostly just day by day,” she said. “Sometimes it’s just hour by hour.”
In between the care routines, they try to get out a bit. Jill has a van that holds Nick and his wheelchair. They used to live up in Pollock Pines, but the number of stairs and the often-closed roads necessitated a move down the hill and into their smaller, one-story house. “And two of my older children (Nick is the youngest of four) live in nearby neighborhoods, so it’s nice to be closer to them, as well.”
By age 4, Nick began falling a lot and getting a lot of respiratory infections. Soon, his motor skills began deteriorating. Nick’s disease is hereditary, but rare; fewer than 500 people in the U.S. have ataxia telangiectasia, a neurodegenerative disorder that affects the nervous system and has compromised his immune system. He’s landed in the hospital many times with respiratory infections. He coughs frequently, trying to clear the mucus that builds up in his scarred lungs and sinuses.
As good a housekeeper as Jill is, she says she can’t keep the aging wall-to-wall carpet in her home clean enough. The machine that delivers nourishment to Nick through a feeding tube sometimes leaks, and seeps down into the padding, leaving harmful bacteria below the surface that plays havoc with Nick’s respiratory system. She also has trouble with the slippery vinyl floors in the two small bathrooms, one that holds most of the equipment that she uses to clean Nick’s feeding and elimination apparatuses, the other that has the shower where she bathes him.
“By sticking to a routine, that keeps us sane, right? Well, relatively sane,” Jill said, and they both smile. Having a smooth laminate floor in the living room and Nick’s bedroom would make it easier to push his wheelchair around, besides being more sanitary.
Replacing the vinyl in the baths with a non-slip surface would also make their daily routine easier and safer. The Masterses get by with Nick’s monthly SSI payments and Jill’s compensation from IHSS as his full-time caregiver, but with Nick’s medical needs, home maintenance and improvement are not possible on their limited income.
All Book of Dreams donations are tax deductible and none of the money received will be used for administrative costs.
Needed: Approximately 700 square feet of laminate flooring and non-slip bathroom tile, removal of the old vinyl and carpeting, and floor prep.
Cost: Approximately $7,000