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It was 5 o'clock in the morning, and Bob Hicks, 64, was certain that he would find his mother dead. He had been a medic during the Korean War. He knew death. He'd smelled it on his mother the night before. Bob got out of bed, walked a few steps over to an easy chair, and drank a beer left over from the night before. Tears welled in his eyes. "What could I have done to give her one more day?" he asked himself. But one more day of what? Lying in bed. Helpless. Unable to walk, eat, or often recognize her own son. At age 87, Amanda Hicks was paralyzed from stroke, demented from Alzheimer's, sustained by a feeding tube. Bob knew she'd be better off dead.
Bob walked down the hall to see his father, who had owned and operated a gas station for 40 years. Now, at age 90, William Hicks weighed 117 pounds. He wore a diaper. A feeding tube was implanted in his stomach. The light was on in his father's room. Bob poked his head in the door. "Good morning, Dad." "Morning, Bob." Saying the two words took nearly all of the old man's strength. Bob went back into his room, smoked a cigarette, and then went downstairs to the kitchen, where he put on a pot of coffee. He'd need a strong cup. Whatever he found in his mother's room, he'd still have his father to care for. MODERN MEDICINE can give Americans longer lives, but it can't promise good health. Millions of Americans like Bill and Amanda Hicks will endure long, slow declines, and increasingly this will occur at home. "This is going to be the future of America and health care," said Jeffrey R. Friedman, the primary-care doctor for Bob Hicks and his parents. The fastest-growing category of Medicare costs is home-health care. And the fastest-growing job category in America is home-health aide. Care that was once limited to hospitals and nursing homes - feeding tubes, IV drips, catheters, even ventilators - is now being given at home, partly to reduce health-care costs and partly because Americans want to remain at home as long as possible. The burden of providing this care has fallen on families - on people like Bob Hicks, assisted by an army of home-health workers. New support services crop up almost daily - adult day care, respite care, shared housing. But, ultimately, family members themselves must shoulder most of the physical and financial weight. Most important, they must carry the emotional strain of trying to decide what's the right thing to do, and wondering how they can endure. AS BOB MADE COFFEE that morning, birds chirped outside. Bob grew up in this three-bedroom white house with green awnings on a shady street in Haddonfield. He moved back after a divorce in the mid-1970s and started an accounting practice, which he sold four years ago, partly to care for his parents. Bob Hicks watching from the porch, would stay home when paramedics took his mother, Amanda, to the hospital because he would be needed by his father. Amanda Hicks is recovering in the hospital from her latest problem, which required amputation of a foot. Growing up, he and his brother, Bill, and his parents once had known all the neighbors. Even until a couple of years ago, his father handed out flags to children for the July Fourth parade. The Hickses now are unknown to many on their street, with no exterior signs of life other than home-health aides coming and going, frequent ambulances, the trash and recycling set out on Fridays. The coffee was ready, but Bob waited to drink it. He walked through the kitchen and into his mother's bedroom. Flipping on the light, he looked closely at his mother, lying in bed. Her eyes were open, a blank look on her face. Her foggy blue eyes looked through him, into the middle distance, as if he weren't there. She was breathing. Amanda had been like that for three years.
"Good morning," Bob said cheerfully. "How ya feeling? "Tired," she said. "You cold? . . . You need a blanket?" No answer. She kept looking through him. He kissed her on the cheek. Then he walked out and drank his coffee. Bob didn't care that it was a beautiful day in May. For him, it was the start of another day like all the rest. MEDICARE HAS SPENT more than $307,000 to care for Bill and Amanda Hicks in the last decade. Much of that, which includes nursing care at home, was spent in the last two years. Amanda was hospitalized 20 times during the last three years, usually for bladder infections. That cost Medicare $52,817. Bill's hospital bills were higher. Medicare paid $134,250 for 14 hospitalizations. Bob Hicks reacts to bad news about his own health from Dr. Joel P. Chack. The doctor prescribed medicines for problems detected after Hicks wore a heart monitor for two weeks. "These are all a consequence of your lung disease," Chack told Hicks. Reeve is British, and Bob adores her. Just hearing her royal English voice lifts his spirits. The price tag of home care for Medicare jumped from $2 billion in 1988 to $15.9 billion last year, and now it accounts for 13 percent of all Medicare costs. BILL HICKS STARTED SMOKING filterless Camels at age 13. He suffers from heart disease, emphysema, clogged blood vessels in his legs, and other illnesses. While Bill was in the hospital last December for stomach problems, doctors detected an aortic aneurysm, concluded it was life-threatening, and operated. He spent 50 days in the hospital, nine of them in intensive care. He wasted away to 107 pounds, and lost the strength to feed himself. Surgeons implanted the feeding tube. By May, he was up to 117. Feeding his father and mother is Bob Hicks' most important job in life. He does it the same way every day. First he does his father. He pours six eight-ounce cans of Ensure Plus, a rich nutritional supplement, into a plastic bag, hangs it from a pole, connects the bag and tubing to the tube in his father's stomach, and turns on the pump for the day. Bill feels nothing, tastes nothing. The flavor is vanilla. Then Bob moves on to his mother. "Good morning, Mama," he says. "How are you?" He knows before he asks what she will say: "Tired." Bob holds her hand a moment, pulls back the covers, and checks her out - no bed sores. He gives her medicine - a squirt through the feeding tube into her stomach. He takes her pulse, blood pressure and temperature. The cases of Ensure are stacked against the bedroom wall, as if in a warehouse, an ominous sign of endless days of tube feedings that he must give. Bob hooks her up just as he did his father. He usually offers his mother a drink of water. He gets a small paper cup, holds a towel under her chin, and gives her a sip. She gags and burps and seems as if she's going to choke. Ever since her stroke three years earlier, she's been unable to swallow, which is why Saturday came and went, like a soldier's one-day furlough between fierce battles. They spent much of the day sitting around, gabbing. Brynn talked of having a baby. On Sunday morning, Bob's older brother, Bill, drove up from Annapolis. Bill stayed for nearly five hours. First he and his nieces went to see Amanda, who was hospitalized for an infection, and stayed 10 minutes. She didn't recognize them. Back home, they prepared the prime rib, creamed onions, baked potato. Bill went upstairs to invite his dad to join the family downstairs. "I can't," his father said. "I'm too weak." Bob Hicks tries to coax a smile from his mother, Amanda, 87. With help from home-health workers, Hicks takes care of his mother and father, Bill, 90, at their home in Haddonfield. They feasted in the dining room. Bob ate so much and laughed so hard that it seemed this meal would sustain him for months, physically and emotionally. The man who hadn't had a day off in two years made plans to meet his brother in Baltimore for an Orioles game and to eat some Boog Powell barbecue. After dinner, Bob, his brother, and the girls sat in the living room and talked about Amanda. "I think it's a travesty to have her sustained like this," said Bob's brother. "It would definitely be a blessing to have her pass away as soon as possible." "If she were younger," said Brynn, "and there were a chance she would get better, we would say, 'Wait.' But she's lived her life. Her life is over." "She loved life," continued Bill. "She loved living. I have such wonderful memories of my mother. I loved her dearly. But there is no future. The point is, it's over." Bob leaned forward in his green easy chair, and looked squarely at his big brother. "Should Mom live or die?" "I would pull the plug," said Bill. "Could you do it yourself?" Bob asked. "Got to be done," said Bill. "You got brass ones," said Bob. Brynn and Julie wanted to put their grandparents into nursing homes. "You can't give up your life," said Brynn. A few minutes later, Bill went upstairs to say good-bye to his father, who was watching the U.S. Open Golf Tournament. Bill was off to North Carolina to visit his own daughter and grandchildren. After all, it was his Father's Day, too. "I've got to go, Dad. I'll be back soon. In a couple weeks." "That's what you said the last time. You were gone for months." "Something came up, Dad. I had to take a business trip. I'll stop back." "I wish you could help Bob out more." "I do, too, Dad." A quick hug, and he was out the door. An hour later, Brynn and Julie had to go, too. They had planes to catch. Amanda Hicks Bob walked the girls outside into the bright sunlight. Brynn put her guitar into the car trunk. Bob agreed with the doctor's assessment. "They're both going to be around a while," the doctor added. "They're not going anywhere." Bob asked for more Valium to help him sleep. He got it. When Bob got home, he smoked a Marlboro Light and started lining up the butts again.
Bob Hicks climbed out of his green chair and lumbered over to the door, muttering about how "this is the worst day of the year." "They say she can come home in a couple weeks. She'll probably outlive us all." |