CAROL JENKINS HAS had muscular C dystrophy since she was 7 years old. She is 40 now and her muscles have atrophied to the point where she is paralyzed and can no longer breathe by herself. Last summer, unable to expel carbon dioxide, she was hospitalized and went into a coma. Her husband, Russell, says her physician wanted to perform a tracheotomy that would allow her to breathe with a machine. But Russell was also told that muscular dystrophy patients who have tracheotomies usually don't live more than six months because of infections, and that Carol would never be able to talk again. He says he did not know what to do and so he prayed. And while he prayed he thought of what his wife had told him the night before she went into the coma. She had said she wanted every little chance she had to stay alive. He gave her that chance.
Carol survived and she returned home to live with her husband in their apartment in Suitland. She retired on disability from the Census Bureau where she had worked as a statistical assistant for 16 years. She lives now with the aid of a ventilator, a machine that has taken the place of her lungs, and is hooked up to the tube in the opening of her throat. The tracheal tube is one that allows her to talk but it has to be changed once a month. "It's painful," says Russell. "She bleeds a lot for two weeks and it's sore. Then the next month comes and it's the same thing again."
Carol is currently under the care of a registered nurse, Bonnie Alvarado, who spends nine hours each day with her while Russell works at his clerical job with the Census Bureau. Up until January of this year, Blue Cross and Blue Shield, whose high option insurance plan Carol carried while she was a federal employe, covered 80 percent of the $112-a-day cost for a private nurse, and most of the $425-a-month rental fee for the respirator. But on Russell's take-home pay of $332 every two weeks and Carol's $432-a-month disability check, having to pay even the outstanding 20 percent balance was an awesome financial burden. But when Blue Cross renegotiated its federal employes policy so that it will now pay for only two hours of daily nursing care 90 days a year, the bottom fell out of the Jenkins' world.
Russell Jenkins tried every federal and state social program he could think of to see if anything would pay for home nursing care. Maryland Medicaid does not, federal Medicaid does not and Carol is not eligible for Medicare until she has been receiving disability for two years. "A social worker at the hospital tried to talk me into putting Carol in a nursing home," says Russell. "I said, 'How would you like to put your husband in a nursing home? She's my wife. I want to take care of her.' She insisted on calling anyway." No nursing home would take a ventilator patient who has to be watched 24 hours a day. Alvarado says the alternative is a hospital intensive care unit.
"The respirator," she says, "has to be monitored every half hour. The pressure and volume has to be checked frequently. You never know when the heart will give out or the lungs. She has been in a coma because of the wrong mixture of gases. It's very risky without a trained person."
Russell has called nursing services to see if someone less highly trained could be hired to care for his wife, but he says that once he tells them his wife is a ventilator patient they say that a nurse's aide is not qualified. Instead, they recommend a registered nurse.
Neighbors and members of the First Baptist Church of Suitland, where the Jenkinses worship, have pitched in by doing grocery shopping and the laundry and the church has set up a fund and spent $7,000 on Carol's care. Census Bureau employes have contributed money, and a report on WRC-TV about her situation raised more contributions. But, says Carol, "How long can those people go on with their wonderful generosity?"
The Jenkinses feel particularly bitter toward the Muscular Dystrophy Association, which can't help with her nursing expenses. "They show all those pictures of Jerry Lewis and his kids," says Russell.
"Well, some of those kids grow up and I'm one of them," says Carol.
"They're caught in the middle because of their insurance changing its policy in midstream," says Holly O'Brien, the patient services coordinator of the local Muscular Dystrophy Association. "Ordinarily this sort of catastrophic care is taken on by insurance companies. We are right now paying for the balance of the respiratory equipment. That is not an authorized service but . . . we made an exception . . . In order for us to pay for nursing care for one patient it would jeopardize our other medical programs." O'Brien says the local Muscular Dystrophy Association has only $230,000 for patient services such as clinics, wheelchairs and physical therapy for 500 people in the metropolitan area. "We're just not a bottomless pit."
Richard Luehrs, senior director of the Blue Cross federal employe program, says that benefits are negotiated every year with the Office of Personnel and Blue Cross could no longer afford to cover extensive private nursing. Luehrs, who described the situation as "unfortunate", suggested that Carol Jenkins could switch to another federal insurance carrier that might provide better private nursing benefits. Her husband says none do.
Russell acknowledges that he does not have the training to care for his wife in the case of an emergency, but he knows there is no possibility of obtaining 24-hour nursing care. The ventilator has alarms on it in case it malfunctions while Carol is sleeping, and Russell has made a device with a bicycle horn that Carol can press to wake him up at night in case her breathing is obstructed. "I'm taking a chance, is what I'm doing, but I have no choice."
"I have three questions," says Carol. "Why won't Muscular Dystrophy help? Why do I have to wait two years for Medicare and why can't the state of Maryland's Medicaid pay for nursing care? And how can Blue Cross switch like that?"
They are all good questions that deserve the attention of people writing Medicare rules and of people running the federal employes insurance program. It is, as Bonnie Alvarado put it, "very discouraging to see what families have to go through to keep their loved ones at home."