A report in Sunday's Washington Post incorrectly stated that Montgomery County was providing a home health aide two hours a day, seven days a week, to Deanna King, who is suffering from a brain tumor. Of the 14 hours of service provided weekly, the county is paying for three hours. The American Cancer Society is paying for an additional three hours, and the Visiting Nurses' Association is paying for the remaining eight hours.
For James and Joanna King, the final humiliation came last April. For 2 1/2 years, they had devoted their lives to seeing their daughter Deanna through operations and radiation therapy for a brain tumor.
Now, the eight year-old was home -- totally paralyzed. The Kings wanted to keep her there, but they could not handle her alone. Medical bills had devoured their savings. So they asked Montgomery County to pay for visits by a home health aide.
A social worker told them the only way she could get the funds was to agree to say it was "to prevent child neglect."
"I refused to do it," said James King, a county employe. "We are very proud people, and we have learned to swallow a lot of pride in the last 2 1/2 years. But . . . the last thing I needed was to be classified as a child neglecter."
"We were trying so hard to take care of her," said Joanna King. "All the months she spent in hospitals, she never spent a night alone. It was just the irony."
James King's forehead is deeply creased, his skin pasty with exhaustion. His wife's voice breaks momentarily when she speaks of how the couple was forced, at last, to institutionalize their daughter because she could not be given needed therapy at home.
Deanna is home again, with a recurrence of her brain tumor, and this time the Kings vow she will stay there. Their battle with insurance officials and social service agencies to get services for her is not over. They say it has broken them both emotionally and financially, and that they are penalized for being responsible people with a middle-class income.
"I would be better off by declaring bankruptcy, quitting my job and going on welfare," said James King. "I wouldn't have to pay a nickel. I'd have more money."
Families struggling to keep a sick relative at home face more than the emotional confrontation with illness and mortality. Whatever their income, they also collide with a labyrinthine and irrational health benefits system -- a system designed for patients who get better, not for patients who get worse.
The concept of chronic or terminal disease "is a little confusing for insurance companies," said Barry Wilson, vice president for public affairs at the Washington branch of Blue Cross.
Private and government insurance programs will pay thousands of dollars for services to a patient in a hospital or a nursing home, but much less for services designed to keep the person at home.
Medicare and Medicaid provide for visits by health aide -- a nurse who provides such basic care as bathing and dressing the patient -- only if the individual also needs skilled nursing, physical therapy or other "hospital-type" services. Many private insurance companies will not pay for a health aide or homemaker even in that situation, and the number of home visits covered by insurance is always limited.
Yet it appears that many people with chronic illnesses could leave hospitals and nursing homes if more home services were covered. A 1976 report of the House Select Committee on Aging estimated that nationally up to one-quarter of nurshing home residents could be sent home.
A report prepared earlier this year by social workers at eight Washington hospitals containing about 3,500 beds for adults identified 88 patients who could have gone home immediately if home services had been provided. Their combined hospital bills totaled more than $28,000 a day.
Whether or not a patient has health insurance, the heaviest responsibility for his care at home always falls on the family. Social service departments of local governments usually are swamped with requests for aid, and must concentrate on serving the poorest and most abandoned invalids in their care.
Organizations such as the Visiting Nurses' Association provide periodic nursing or therapy, and sometimes absorb some of the cost through charitable contributions -- but their resources are also limited.
Some hospice programs offer intensive services in the home, but only for patients expected to die in a short time -- usually a few months at the most.
Other groups oriented to specific diseases, such as the American Cancer Society, sometimes donate money or volunteers to help victims.
But the invalids with the most devoted families are sometimes the last in line for help. Wealthy families can hire nurses, but for most relatives trying to keep a sick person at home, there may be little or no respite from an endless cycle of tasks: keeping the patient clean and comfortable, preparing meals, administering medicines. Illness invades their homes and orders their lives.
This is the story of three very different families and their fight to care for sick relatives at home.
Glenn Bayles' worst moment so far came last spring, when he was lying in bed at Eugene Leland Memorial Hospital in Riverdale, wondering whether he would ever go home. The 45-year-old victim of a progressive, incurable nerve ailment that causes gradual paralysis, Bayles was having his breathing done for him by a machine.
"When do you think I'll get off this ventilator?" Bayles asked his doctor.
"He said, 'You'll never get off.' I said, 'I'm getting off'."
Once a 185-pound trucker, Bayles now weighs less than 100-pounds -- but his smile still conveys a defiant strength. Under the tattoos that cover his chest and arms are muscles that have grown stringy and wasted from amyotrophic lateral sclerosis, also called Lou Gehrig's disease, after the New York Yankee baseball player who was its most famous victim.
One of the tattoos shows a skull. The slogan underneath used to read, "Death Before Dishonor," but part of it has disappeared. Now it just says, "Death."
For a few hours each day, Bayles forced his chest muscles to work again. It took weeks, but he got off the ventilator. He still breathes through a tube that protrudes above his collarbone and prevents him from talking, except with the aid of a special voice amplifier. But for now, he is home.
For four hours during the mornings, a health aide helps Bayles' 19-year-old daughter take care of him. At 2:30, his daughter leaves for work at a nearby nursing home. Until 4, when Bayles' wife Ann gets home from her housekeeping job at the same nursing home, Glenn Bayles is alone. He sits in his wheelchair, concentrates on breathing and hopes that he won't choke to death.
"It's really tough breathing through this tube," he said. "I've had problems choking a couple of times."
Bayles has been fighting his illness since 1976, although it was not until 1979 that doctors diagnosed it by name. When his right leg grew gradually weaker and he could no longer drive a truck, he enrolled in electronics school -- and graduated last year, even though by then his right hand was too feeble to clamp circuits together. For months, he walked by leaning on cars and buildings before he would use crutches, and he used crutches until he fell down his front steps before he would agree to use a walker.
Now he hangs onto breathing with the same determination, knowing that the day he goes on a ventilator, he will leave home for good.
"This disease -- if it hold true," he said, "the only thing it leaves moving on you in your eyeballs."
For the Kings, the world seemed like a safe place in October 1977. James King had a $24,000-a-year job with the country, with benefits that included comprehensive health insurance. A few weeks earlier, the family had moved into their just-built dream house, surrounded by farm land and rolling hills.
"We were fat, dumb and happy. We had two beautiful children," King said. "I knew it was going to be a hard haul . . . but we were on our way to the good life."
Then, one morning at breakfast, soon after Deanna had started first grade, her left side suddenly went limp. From that moment, everything changed.
"One minute there's a big light at the end of the tunnel," said King, "the next, the door is slammed shut in your face."
That first attack sibsided in a few hours, and doctors thought it was a mild stroke or seizure. When Deanna had a second "stroke" at Christmas, a neurosurgeon suspected a tumor, but told the Kings it was probably benign and removalbe.
But when the surgeon operated at Children's Hospital in January 1978, what she found was a very malignant brain tumor. "On a scale of 1 to 4, this was a 6," King said. "It was removed, but of course . . . there's just no way to get all the milignant cells that trail off into the brain."
Deanna had six weeks of radiation and chemotherapy. But in August, tests showed the tumor had recurred, bigger than ever. It was removed again.
For more than a year after the second operation, the Kings tried to keep life for Deanna as normal as possible.
During a trip to the Smithsonian on the last day of 1979, Deanna's right leg suddenly gave out. James King spent the day carrying her around the Mall. From that day on, the little girl's condition deteriorated daily.
The night before 73-year-old Annie Gray goes to the doctor, she gets so excited she can't sleep. It is the only time she leaves her house.
Gray spends the rest of her days in two rooms on the first floor of her home in the Mount Pleasant neighborhood of the District of Columbia. Diabetes has left her blind and crippled. Part of one of her legs has been amputated because of bad circulation. Her 79-year-old husband and 71-year-old sister, who take care of her, cannot take her outside because they are too frail to carry her wheelchair down the steep front steps.
From 8 a.m. until noon five days a week, a homemaker provided by the city comes to the house. The homemaker, Mary Garris, gets Gray out of bed, washed and dressed her, does her laundry and cooks her meals for the day. For several months, Garris was there eight hours a day, but last February when the city's budget crisis got under way, the Grays received notice that her services would be cut in half.
"She actually needs eight hours," Garris said: "She needs someone to really take care of her personal needs."
Annie Gray sits upright in her wheelchair for hours each afternoon, because her relatives have trouble lifting her in and out of bed. Sometimes roaches crawl up her leg, frightening her because she cannot see to shoo them away. Sometimes, Garris said, she forgets and tries to walk on her amputated leg. Then she falls, and it may take her husband an hour to get her up off the floor.
"I'm afraid to move now, since I can't see," Gray said.
Gray's husband, William, is a retired messenger whose hearing and memory are failing. Her sister, Lelia Taylor, gives Gray her insulin every morning, but Garris said Taylor's vision is poor and she can hardly read the numbers on the insulin syringe.
Garris said she believes the family is eligible for more services from local and federal programs, but that they have no idea how to go about getting them.
She took it upon himself to help them submit a Medicaid application, believing that the Grays' income -- only $535 a month -- entitled them to benefits. But she said their application was refused.
Nevertheless, when Gray's doctors at the Washington Hospital Center sent her to talk to a hospital social worker about increased home services, he said the worker just handed her another Medicaid application.
"A lot of things she used to do when I was here eight hours," she doesn't do now," Garris said. "She's always afraid. They really don't get help like they need."
Medically, Annie Gray requires more nursing than many residents of nursing home -- and it may be only a matter of time before she is forced to enter one.
Within a month after Deanna Kings' leg collapsed at the Smithsonian, the eight year-old's speech became slurred and she lost coordination in her right hand. On February 4, 1980, she went back into Children's Hospital.
"Within a couple of weeks, she was just totally paralyzed," King said. "Her head would just loll on her body. She lost everything: speech, bowel control. . ."
But when after Deanna's speech became unintellibible, "we could always understand the word, 'home'," King said. "She'd sit there for hours [repeating], "Home . . . home . . . home . . . home."
Doctors could find no evidence that the tumor had recurred. They blamed Deanna's deterioration on vasculitis, or inflammation of the brain's blood vessels, which they believed had occurred as a side effect on her radiation therapy. By early April, they told the Kings they could do no more for her.
Social workers at Children's Hospital began looking into home services for Deanna, but King said the workers were less familiar with Montgomery County's services than with the District's.
"On our own, we started finding resources in Montgomery County and in the state of Maryland," King said. "We wanted her back home very badly. We must have made hundreds of phone calls."
The Kings soon discovered that James King's salary disqualified them from most programs. "It doesn't matter what your medical bills are . . . if you make a certain salary," Joanna King said. "Montgomery County feels that, if you are a family of four, you should make less than $10,000 a year "to qualify for services."
Deanna's doctor confirmed that their income had been an obstacle, and said social workers at Children's Hospital had done everything they could to help. Doctors at the hospital wrote a report to Connecticut General's regional claim office in Richmond, documenting Deanna's need for home services, and included a medical report on Joanna King's back problem, which interfered with her ability to lift the child unaided.
Several weeks later, after Deanna had come home, the insurance company turned down the claim.
"They said it was not medically necessary," King said. "I told them, 'If you don't pay for it, you're going to end up paying $250 a day for the hospital.' They said, 'It doesn't matter, we won't pay.'"
Asked about the claim, a management staff member at Connecticut General's regional office said she had had no alternative but to refuse it. She said Montgomery County's employe health coverage includes no home health aide services, although Deanna's speech and physical therapists visits were covered.
"We go strickly according to the contract," she said.
It was then that the Montgomery County social worker asked the Kings to agree to say they needed the health aide "to prevent child neglect." In such cases, a law allows federal funds to be used for emergency home services without regard to income. The Kings refused.
Deanna was bedridden and in diapers, Joanna King would lift her, and would then be in pain for the rest of the day.
The family had no money to hire help. They had refinanced their house to pay medical bills, and the monthly mortgage payment took more than half of King's salary. They had spent hundreds of dollars a month commuting to Children's Hospital. Both cars had broken down.
"We're wiped out," King said. "Even if the home health aid cost $1 an hour; we couldn't pay for it."
At last, Montgomery County's social workers found a way for the county to pick up a little more than half of the health aide's $8-an-hour salary. The Visiting Nurses' Association, the American Cancer Society, and a local charity helped with the rest. But at the end of a month, on May 21, the service ran out."
For the Kings, the irony of the situation was overwhelming. Their income was too much, yet not enough. James King was unwilling to work overtime, because he was afraid his daughter might not have long to live. "I just can't justify not being here," he said.
Linda Brown, supervisor of Family Services for Montgomery County, said she is used to encountering anger such as the Kings'. She said part of it is an inevitable reaction to the pain of a family member's illness. And part of it, she said. "Nothing at all is looked at for homemaker services except the gross income.
"The system is absolutely incredible. It's unbelievable. And it's just as difficult for the staff to deal with as for the people coming to seek help." a
She said the county's social workers had done everything possible to get home health services for the Kings, and would continue to do so. But she said they are limited by what the law allows.
"It places tremendous amount of pressure on the family to provide all the supports," she said. "I don't know of any family that can do it without going through what the Kings are going through."
When the home health aide's visits ended, the Kings gave up. They felt Deanna was not getting enough physical and speech therapy at home, and they couldn't handle her care alone. Reluctantly, they decided to hospitalize her for rehabilitation at Maryland's Walter P. Carter Center in Batimore. That, at least, would be covered by insurance.
I don't want to sound like I didn't want the responsibility, but I would hate to think we didn't give her everything she needed," said Joanna King. But she added, "It was the hardest thing to do -- because we had never left her."
Before Glen Bayles came home last May 29 after his $44,000 hospitalization, he and his wife were under the impression that he would receive many health services at home. Bayles' disability ended him to Medicare, which -- on paper -- covers skilled nursing, physical and speech therapy as well as visits by a home health aide.
But it has not worked out that way. Medicare covers the two hours of the health aide's four-hour visit each weekday that are considered "personal care." The Visiting Nurses' Association absorbs the cost of the other two hours.
Medicare is paying most of the cost of renting and maintaining a standby ventilator. But Bayles said he is receiving no physical therapy, and no professional breathing therapy. A social worker at Leland Memorial Hospital said doctors did not order it because they apparently did not think it would help him improve.
Ann Bayles does what she can, pounding on his chest daily in imitation of the respiratory therapist she watched at the hospital.
She said no one taught her how to do it. "I'm not a qualified nurse," she said."I'm just a housekeeper."
She comes home each day from cleaning 27 rooms at the nursing home and starts caring for her husband: lifting him, feeding him, suctioning mucus from his windpipe. Because either she or her daughter must always be home, they never have a free weekend together. One works the weekend shifts at the nursing home, while the other takes care of Bayles.
"It's kind of rough after you work all day," Ann Bayles said.
Bayles savors the days at home now, knowing that some day soon he may be back in the hospital.
"I would probably have to go back on a ventilator," he said. "I have to be realistic . . . there's no way they could take care of me at home."
Deanna King spent five weeks at the Carter Institute. She received intensive physical and speech therapy. But to her parents, she seemed to withdraw. Even though they brought her home every weekend, she stopped trying to talk.
On June 26, tests showed that the tumor was back -- this time on the opposite side of Deanna's brain. The Kings drove to Baltimore and picked her up.
"We're going to keep her home," Joanna King said. "The unfortunate thing was [that] we put her in there."
Deanna's doctor disagreed, saying the family had done what seemed best at the time. The county is providing a health aide again -- this time for two hours a day seven days a week -- and Brown said her department will try to increase the hours as needed.
She said she hopes that, in time, the system will become more humane to families like the Kings. But she doubts it will ever provide all the help a family in crisis needs.
"There's just not enough compassion and empathy to go around," she said.