Time may be running out on care
By WAVENEY ANN MOORE
© St. Petersburg Times, published January 30, 2001
ST. PETERSBURG -- William Gelb is dying. But he still lives at home, where Medicare pays for a hospice to care for him eight hours a day and to do the tasks his wife alone cannot.
The program eases the path for those who are expected to die within six months. But Gelb, who is 78, entered hospice care more than 18 months ago. He has outlived expectations. And he may be outliving the program.
The money is running out.
In the small living room a few blocks from Tampa Bay, a hospital bed fills his living room. From it, Gelb can watch television. He particularly enjoys keeping up with the news, weather and figure skating.
He cannot leave the bed, which gives him a bird's-eye view of downtown, without the help of two pairs of hands, one set belonging to his nurse and the other to the petite woman he met and married in New York 22 years ago.
This onetime fashion designer, though mentally alert, has succumbed to his physical ailments. Gelb must be washed and fed and his body coaxed to perform its most basic functions. He has Parkinson's disease, a progressive disorder of the central nervous system that causes his hands to shake and has taken away his ability to walk. He also has respiratory difficulties and other health complications.
For the past year and a half, hospice has provided eight-hour-a-day, seven-day-a-week nursing. But that may soon change. Strict government guidelines that govern Medicare benefits could force a drastic scaling back of care.
His wife, Mary, 74, is terrified. She is not sure when the cut will come.
"I don't want to ask. I don't want to ask," she said recently, her voice breaking.
Mrs. Gelb said it would cost about $5,000 a month to provide the kind of care her husband now receives and that it is care she cannot afford.
A hospice now pays for her husband's care under a Medicare program for patients whose life expectancy is six months or less. Patients qualify for services such as nursing, counseling and spiritual care, and their family qualifies for bereavement support.
But eligibility can be tricky, said Michael Bell, vice president of development and community relations for Hospice of the Florida Suncoast.
"Six months is a moving target," he said, explaining that doctors can recertify a patient who has not died within six months if there is continued deterioration. On the other hand, eligibility for the Medicare hospice benefit disappears once the condition stabilizes or improves, Bell said.
Gelb's relatively unchanging condition during the past two years has put him in jeopardy of losing the very care his wife thinks is responsible for keeping him alive. It's an irony not lost on Bell.
Late last week Gelb was rushed to the emergency room and admitted to Palms of Pasadena Hospital for a series of tests.
"This could be just a flare-up of symptoms," Bell said.
"His condition could stabilize once again. . . . Or it could be the beginning of an actual decline. It's a very dynamic thing to try to keep the care current. If his decline continues and the referring physician would agree that we are looking at a limited life expectancy, then recertification to the Medicare hospice benefit could happen."
Gelb is up for recertification in mid February, Bell said.
Meanwhile, Mrs. Gelb worries and insists that she does not want to put her husband in a nursing home.
"He likes to be here," she said, as she sat in their apartment in Presbyterian Towers in downtown St. Petersburg.
"Maybe in the future. But he's still a person. He reminds me that "today you have to go to church,' "today you have to do the laundry,' " she said. "I ask God, tell me what to do."
She added that her husband, who is prone to choking, would not survive in a nursing home. Such facilities do not have enough staff to give him the individual care he needs, she said.
There is another reason she is fighting to keep him at home.
"Sometimes he has the nightmares," Mrs. Gelb said.
"He has them frequently," said Carolyn Anderson, a hospice nurse. "She says he wakes her up sometimes talking, crying."
The nightmares are related to his suffering during the Holocaust, Mrs. Gelb said.
Born in Czechoslovakia, Gelb, his parents and siblings were forced one night from their home by Nazi soldiers. The family's factory was confiscated, and he was sent by cattle train to a labor camp in Hungary. Gelb, who never saw his parents again, later learned that they had been killed in a concentration camp. It took many years before Mrs. Gelb was able to persuade her husband to talk about his experience, she said.
"He is Jewish and I am Catholic. For that, I try to help him, because I know how these people suffer," said Mrs. Gelb, who is from Colombia.
"I can't take it that he has to suffer at the end of his life."
Mrs. Anderson, who has nursed Gelb for more than a year, admires his wife's devotion.
"I think that she's just a very, very good Christian lady who knows that he has been through a lot, and she feels that she has to do everything to help him," Mrs. Anderson said.
"Sometimes he can be a little stubborn, and she just lets things slide off her back," she said.
Gelb likes to spend most days in his recliner, Mrs. Anderson said.
"He's with it mentally, so he wants to get up and go in that chair. (Mrs. Gelb) can't lift him and put him in that chair and get him back. You physically have to lift this man to a standing position. Sometimes he can help you a little bit. Sometimes he can't," Mrs. Anderson said.
With the status of Gelb's hospice care in limbo, the agency is trying to set up a patchwork of in-home nursing that would involve the services of other agencies, Bell said.
"He has a high need of care, almost custodial. Our plan is while he may not fit the Medicare Hospice benefit, to see what else can we offer," Bell said. "It's beyond what Mrs. Gelb can do."
In the past, the Gelbs have been helped by Gulf Coast Jewish Family Services, through grants designated to provide services for Holocaust survivors. But the agency can provide only limited assistance to the Gelbs, said Joan Benjamin, administrator at Gulf Coast Jewish Family Services.
"Our funding from the Jewish Material Claims Conference enables us to provide three to four hours of in-home care once a week, or respite care, which is to allow the caregiver a break of a few hours a day, over a period of time," Mrs. Benjamin said.
A few hours of assistance a week will fall far short of meeting their needs, Mrs. Gelb said.
"That's nothing. . . . You see the situation," she said, gesturing toward Mrs. Anderson as the nurse undressed Gelb after a doctor's visit.
"She comes from 9 to 5," she said of Mrs. Anderson. "She takes very, very good care of him. She helps me in other ways when I go to make the errands. I can leave her with him."
Many times, when her burdens seem unbearable, Mrs. Gelb leaves to seek refuge in the chapel at St. Anthony's Hospital.
Bell said her worries are shared by families across Pinellas County.
"It's the picture we see more and more," he said.
"The broader challenge is that for more and more patients, the care needs look like this family. How do we piece it together, when it doesn't match the Medicare hospice benefit?"
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