A Lehigh Acres woman who spends nearly 24 hours a day, seven days a week, taking care of her son, who is in a vegetated physical and mental state, has become involved in a state and federal dilemma with Medicare and Medicaid and the firm that supplies oxygen to her son because the firm has not been paid by Medicaid.
Her son cannot live without constant oxygen being pumped into his lungs.
"It's like a living nightmare," said Linda Washburn, 63, of 602 Roosevelt Ave. in Lehigh. She barely remembers the last time she left the house and she says she has no friends, because she is unable to leave her son in the care or people who do not know how to take care of him.
Shane Wood, who is in his 30s was born with a brain tumor. He was not expected to live, but has survived because of his mother’s care and treatment.
Washburn herself is not well and takes thousands of dollars of medication and says she has been told she has a terminal illness. She also has to use a cane to get around because she needs surgery on both knees. But without someone to tend to her son, Shane Wood, she is unable to go to the hospital. She has canceled already twice planned visits to the hospital for knee surgery.
But the stress of coming from the firm that says it wants its oxygen tank equipment back because Medicaid isn't paying the bill, is a nightmare.
"I can't let my son die because of the lack of oxygen," she said. "They came the other day and I wouldn't answer the door. I am not going to let his oxygen equipment, which keeps him alive be removed from my home.
"There have not been problems with Medicare and Medicaid like this over the years that Shane has needed oxygen to live, she says.
But she says nobody will listen to her. It's all bureaucracy that she fights every day of her life, she says.
She has been taking care of her son, who is 36, but has the mind of a three-year-old, and the body of a 12-year-old, since he was born with brain cancer. He is blind, has seizures and cannot talk and cannot walk and is incontinent and she has to change his diapers several times a day.
Shane now has a Tracheotomy because he cannot breathe through his nose or take food through his mouth. He is fed with tubes to his stomach. The "trach" has to be cleaned out often and when his mother hears him making gurgling sounds, she knows she has to act fast to clean it out so air can go to his lungs through the opening in his throat.
There are many reasons why air cannot get to the lungs of a patient. The windpipe may be blocked by a swelling; by a severe injury to the neck, nose, or mouth; by a large foreign object; by paralysis of the throat muscles; or by a tumor. A patient may be in a coma, or need a ventilator to pump air into the lungs for a long period of time.
Washburn owns her own home because of money received from an insurance company when her home was destroyed by fire in Michigan. When she came to Lehigh, she paid for a house, but she has no money in the bank or in any savings account.
Because of her situation, she has to depend a little more than $40 for food stamps a month, not enough, she says to buy groceries.
She has little family support and her son's father left her many years ago after Shane was born.
"He was ashamed that our baby was born this way," she said.
Shane has been hospitalized so many times that Washburn can hardly remember the number, but over the past 36 years, she says it could number in the hundreds. She, too, has been hospitalized several times for several medical problems.
Her bedroom is adjacent to where Shane's hospital bed is located about 15 feet away.
Washburn says she sleeps two hours maybe at a time, both day and night, because if she hears any problems from her son, she gets up and tends to him.
"We do have a male nurse who comes over in the mornings and we try to get Shane hoisted up into a chair and take him outside in the fresh air and take him for a walk. This registered nurse is familiar with working with people like Shane. But Washburn is seeking more help from an additional nurse who can come in later in the day or at night so she can sleep. But finding someone who has the knowledge to handle her son is almost impossible, she said. She claimed that one caregiver caused a break in Shane's leg.
Even now, she has to give her son Morphine to ease the pain. She can tell when he is in pain from the grimace and appearance on his face.
She worries about what will happen if there is a power outage from LCEC because the oxygen pumping machine will cease to work and in her words, "he can die in minute."
She was given a generator from someone in Cape Coral but it was stolen and she thinks it was by an ex- friend of a family member.
She prays the electricity won't go off and worries about tropical storms and hurricanes when power is likely to go out. If that happens, like with the recent threat of Tropical Storm Isaac, she calls an ambulance to take him to the hospital where emergency power is available.
Shane's mattress needs replacing, but she doesn't have the money to buy a new one.
And she has looked at nursing homes where her son could go while she has knee surgery and she would plan to be in the same room recovering after the operation. But so far, she cannot find a nursing home locally that she says can take care of him properly.
Shane's life in danger, she says because of the dilemma with Medicaid.
"And who do you talk to for help. It's like nobody is there to understand and to help. And the firms that provide supplies expect to be paid and even though Shane is covered through Medicaid and Social Security disability, she says people want their money and have problems getting it from Medicare and Medicaid.
There is much work to be done to take care of her son. He has to be turned every two hours. His trache suctioned, diapers must be changed and meds given to him through a feeding tube. He needs to be bathed.
"He is blind now and cannot speak. I recognize how he feels from the appearance on his face and from the groans he may make," she said.
There is nobody to help. I don't know anybody. It is difficult getting groceries because she can rarely get out of the house. If there was a volunteer in the community or a group of volunteers who came forward to shop for her, it would be a blessing, she said.
She has no transportation and no money to buy a used vehicle that she could get her son in without harming him.
And because of her bad knees, she is afraid of falling and being unable to get back up.
Her original air conditioning recently broke down. But thanks to the generosity of Builders Care, they provided her with a newer unit, a three-ton unit, but it is not cooling the room that her son is in and she has to run three large five-blade fans all the time.
"Gulf Coast Hospital has certified that Shane needs oxygen 24/7 or he will die. Why doesn't Medicaid understand that?" she asked.
Where are the answers to the plight they are going through?
"I don't know. Nobody knows. Nobody, it seems can help me.
"I won't let Shane die. I will not do that. I will do whatever it takes to keep him alive. I'm his mother and I am all he has," she said.
Washburn can be contacted at 239-368-3181. She needs an advocate to fight for her and her son, but she doesn't know where to turn.
"It's just me and him and I have to fight to keep him alive," she said.