When Julia Gill received a diagnosis of Stage 3 gallbladder cancer out of the blue last year, her world spiraled into despair. Doctors told her that usually they just tell patients they'll do their best to keep them comfortable.
"It's a miracle I'm here," says Gill, who lives with her two sons and her husband in a quiet cul-de-sac in Denbigh.
Preoccupied with her illness and its brutal treatment regimen, she became unable to look after her son Charles, 38, who has intellectual disabilities and autism. On the urgent waiting list for an ID/MR Medicaid waiver through the Hampton-Newport News Community Services Board since 2004, his needs took on new urgency because of her struggle.
For the past few years, on weekdays, Charles has left the house early to work at the Eggleston Center in Hampton. There, in a bare-bones building, he gets paid bi-weekly for his work sorting paper for shredding and assembling bearings. He shares his table and the work with a friend. Gill used to help him get dressed and ready; now, she often isn't up before he leaves.
For months after her diagnosis, Gill endured 28 radiation treatments at the same time that she was receiving chemotherapy through a pump. "I didn't feel like a human being," she says. "It was very hard to have them together." She had her last chemotherapy in the first week of April and is now in remission. She still has residual health problems from the chemo, a loss of feeling in her feet and fingertips and occasional nausea.
Because of her illness and the resulting weakness, Gill has been unable to supervise Charles the way she used to. He has been increasingly left to his own devices for dressing and meals. "There are a lot of things you do for him as a grown man that you would do for a kid," says Gill, who was overjoyed to learn that he received an ID waiver in the last round allotted.
She wants him to have behavioral counseling for a disruptive autism-related sensory disorder; she wants him to have speech therapy; and she'd like to have help with his meals and laundry. At night he doesn't sleep well and is often up and prone to wander. "He doesn't understand danger. You can't expect him to do the normal thing. He's like a little kid," she says.
Gill's not interested in a residential placement for Charles, who is nonverbal apart from the occasional greeting or one-word response. She wants him to stay home with her. "When I had my surgery his was one of the first faces I had to see," she says.
The waiver makes him eligible for an array of services, says LaKeisha Williams, his case manager since 2008. He can continue supported employment and also have access to respite care, assistive technology, environmental modifications and therapeutic consultation for speech, as well as occupational and behavioral therapy.
Recapping when she gave Gill the news, Williams says, "She was just overjoyed. She was very appreciative, excited and happy."Copyright © 2014, Los Angeles Times