Feeling home care pinch
Everything Connie Godfrey needs for her 5-month-old son sits inside a varnished crib in a corner room.
Winnie the Pooh stuffed animals. Building blocks. A few pillows.
More toys and clothes are crammed in a closet or tucked neatly away.
A tiny piggy bank sits on a dresser.
Everyone is ready for Derik Godfrey’s arrival, it seems, including his 4-year-old brother, Donald Godfrey III, who shares a bed next to the crib.
Everyone except Derik Godfrey himself.
Derik has spent most of his life attached to a ventilator in a pediatric ward at Sutter Memorial Hospital in Sacramento, undergoing treatment for diaphragmatic hernia, a condition that at birth created a hole in the partition that separates his abdomen from his chest, forcing his stomach, pancreas, intestines and spleen into his chest cavity.
The condition makes it nearly impossible for the infant to breathe on his own or eat without a tube.
When he was born Aug. 13, Derik was purple. Doctors told Connie Godfrey and her husband, Donald, their fourth child had less than a 10 percent chance of survival.
Today, Derik “is doing great,” Connie Godfrey said. He has physical and speech therapists, and Connie and her husband will learn sign language to communicate with their son until they can one day remove the breathing tube.
The Godfreys have been unable to find in-home nursing for 16 hours a day, when Derik will be hooked up to a laptop-sized ventilator and cared for.
They, like many in Nevada County who need in-home nursing care, are finding the well nearly dry for such services, even though the money for in-home nurses isn’t nearly as scarce as the supply of nurses.
“It’s frustrating to have a baby and not be able to watch him develop,” Connie Godfrey said at her Perimeter Road home near Camp Far West. “The hardest part is seeing other parents with their kids. My husband and I just look at them and say, ‘That should be us.'”
Recently, the Alta California Regional Center, a statewide organization that provides resources for the developmentally disabled, told the Godfreys it would fund a nurse for the required hours.
“It’s really frustrating,” said Lari Knedel, supplemental services manager and a registered nurse for Sierra Nevada Homecare, which supplies registered nurses, licensed vocational nurses and home-care aides. “It’s really discouraging. I’ve had to turn down cases simply because the nurses simply aren’t there.”
In the past year, Knedel estimates she’s had to turn down 12 cases requiring in-home medical assistance simply because there was no one to staff them. She staffed only 70 percent of her cases last year.
“It’s even harder when I have nurses that can’t or won’t take the job for whatever reason,” Knedel said.
A variety of factors contribute to this alarming trend, Knedel and others say, including low pay, a lack of job security and the simple fact that nursing doesn’t enjoy the status it had a few decades ago.
It is especially hard to find pediatric care, Knedel said, since the knowledge required changes often.
The list of those waiting for care include children with rare skin diseases, those paralyzed in wheelchairs and people like Derik who are a human touch away from coming home.
Annie Mindrum of Auburn has searched for a full-time nurse since her daughter, Rachael Wilson, 13, came home seven months after breaking her neck in a freak Thanksgiving 2000 accident.
Wilson, a quadriplegic, needs 40-hour-a-week care. Mindrum only has a fraction of that time covered by medical professionals.
When she took her daughter home from Shriners Hospital in Sacramento after Rachael had spent six months in hospitals, “they said I would have care right away, and here we are,” said Mindrum.
She quit her job to care for her daughter. “I had no clue it was going to be this hard,” she said, who placed newspaper ads and called county and state agencies to no avail.
Mindrum, who lived in Washington state and was visiting friends in Eureka when the accident happened, moved to California for treatment, “and we haven’t been home since.”
“It’s frustrating. You just come home and become a nurse. We’ve had the approval and money for months, but people don’t want to come here.”
Wilson, an eighth-grader, has an aide and uses a voice-activated computer to do schoolwork.
Children aren’t the only ones who need help. Elena Gabler’s daughter, Elke, graduated from college before developing symptoms that became multiple sclerosis. Gabler, of Grass Valley, is her daughter’s sole caregiver.
Elke Gabler has a nurse that can only work between eight and 16 hours a week.
“I’ll take care of her as long as I’m alive,” said the 73-year-old of her daughter, 32, “but it’s a full-time job. To have more care would be a blessing from the Lord, but there’s not much I can do about it. It’s a tragedy,” she said of her daughter, who graduated with a degree in political science from California State Polytechnic University at San Luis Obispo and spoke three languages.
Lana Coil, of Chicago Park, waited three months before finding a nurse to care for her three foster children born with a rare skin disease that necessitates daily bandage changes.
“It was a very long process,” said Coil, who quit her law practice to take care of two boys and a girl. “Every night was chaos. But now, it’s easier on the kids … a huge improvement. I have to be more scheduled now, but it’s a small price to pay so that the kids can have a better life.”
Knedel has 32 open cases that need staffing. She’s not sure if they’ll ever be filled.
“These days, getting a nurse is like rolling the dice. For nurses, it’s a buyers’ market. They don’t have to come here when they know they can go somewhere else close by and get more money.”
And the Godfreys wait. Donald Godfrey – who has collected hundreds of Hot Wheels cars and has them tacked up on a wall in Derik’s room – hopes his son can be home for the Daytona 500 car race next month.
“It’s been an emotional roller coaster,” he said. “It just feels so empty not having Derik home.”
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