1997Explanatory Journalism

A longer life, a longer decline

More Americans are taking care
of relatives at home.
It's less costly and rewarding for some.
Michael Vitez
photos by April Saul and Ron Cortes
November 19, 1996,
Part 3

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 & his dad

Bob Hicks spends a moment with his dad, Bill. Bob Hicks takes care of both his parents at home. He is among 7 million Americans caring for a parent or spouse at home. Bill Hicks, who ran his own gas station for 40 years, has heart disease and emphysema.

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.
Seven million Americans today take care of an ailing or chronically ill parent or spouse at home.

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, Bob's mom, and the paramedics

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.

As the coffee brewed, Bob sat in his living room easy chair, where he spends much of his day. He smoked a Marlboro Light, then another, stacking the butts like tombstones in the ashtray at his side.

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.

Bill Hicks has also incurred more than 200 bills from a myriad of doctors, labs and other providers in the last two years. That came to almost $30,000. Amanda has nearly as much, for $17,000.

Most days, America pays for two hours of care by a home-health aide for Amanda and Bill - $72 each. Bob pays $400 to $500 a week for additional aides.

And then there's Gillian Reeve, a nurse who visits Amanda three times a week, usually for an hour.

Bob Hicks

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.

Reeve is competent and caring. Medicare reimburses her employer $89 for each visit.

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:


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 goofing off for mom

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

Amanda Hicks

Bob walked the girls outside into the bright sunlight. Brynn put her guitar into the car trunk.

Bob's eyes became misty. They hugged.

"It was great seeing you two," he said.

He stood on the step of the porch and watched their car pull away, leaving him alone on his lonely frontier.

He walked back inside, sat down in his easy chair, and sobbed.

ON JULY 8, A MONDAY, at 9:45 a.m., Bob drove two blocks to his family doctors' office. He had an appointment with Joel P. Chack, Friedman's partner. Bob had been wearing a heart monitor for two weeks.

Chack explained that the right side of Bob's heart was wearing out trying to push blood into his lungs damaged from emphysema. The effort had enlarged his heart, and it was now beating irregularly.

"These are all a consequence of your lung disease," Chack said.

"So we have to go to no-smoking again?" Bob said.

"That would be a good idea, wouldn't it?" agreed the doctor. "Unfortunately, the horse is already out of the barn."

It was a conversation they had had before.

"What can be done?" asked Bob, "and what is the long-term prognosis? Should I go home tonight and start planning the funeral?"

"No, you're not going to be pushing up daisies," said the doctor. "You're serious enough that we hauled your bottom in here. But not serious enough that we throw you into the hospital."

The doctor prescribed a number of medications.

Bob wanted to know whether to blame his caregiving responsibilities for his condition.

"What's happening with you is kind of the natural consequences of your smoking," the doctor said. "Now it doesn't help you that you're under a lot of pressure. You've got all that on top of you, and you've got to deal emotionally with the fact that your retirement is turning into a nightmare."

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.

JULY 10, THE MORNING after the baseball All-Star game, was a remarkable day. Cool and beautiful, the summer morning sounds and smells and breezes came pouring through the screen of the open door.

And Kathleen Myall, 47, an $8-an-hour home-care worker for a private home-health agency, arrived to do her magic.

Some aides are excellent. Others sit and watch soaps. Often the house has a revolving door. A few days, or a few weeks, and a new aide.

Myall was the best. An agency paid her wages, but she worked for the Lord, and she would tell you God Himself sent her to the home of Bill, Bob and Amanda Hicks, for they were in desperate need.

On her second day with Bill, she took him downstairs. With his arm draped around her neck, she carried him like a wounded soldier.

Bill looked like a new man sitting in his living-room chair. He hadn't done that since 1995.

Today she had even more ambitious plans for him. She was taking him outside. For a walk.

Out went Bill with his walker, in his bedroom slippers and pajamas, Myall right behind, prodding him with her encouragement.

"Wonderful, Dad," she said. "Doing great .... beautiful."

Bill's longtime neighbor was putting an addition on the house next door. Bill wanted to see it. Myall and the neighbors helped him up the steps.

Bill looked astonished. Stunned. He was sitting in his neighbor's new kitchen, drinking a glass of water, his old self, the putterer.

"Beautiful, Jim," he said. "Big refrigerator!"

"Should we go back home?" Myall asked.

"Can I see the rest of it?" Bill asked.

Bill got the grand tour.

TWO WEEKS LATER, Bill looked sick and scared as he lay back in bed.

Bob thought his dad was acting, to get attention. The frail elderly often try to manipulate caregivers. And the caregivers tend to resent it.

This morning, however, after hearing a rale in father's chest, Bob called 911.


A week later, with his father still in the hospital, Bob dialed 911 again.

Amanda was gasping. She had a high fever.

When the ambulance came, he escorted his mother outside and stood in the driveway as they loaded her into the back.

"Is this your wife?" a paramedic asked.

"You're lucky I don't deck you," Bob said.

Around 1 p.m. the next day, on Aug. 4, Bob went to see his parents. He walked up to the front desk at Kennedy Memorial Hospital.

"I've got a doubleheader today," Bob said, "both my mother and father."

He knew the woman behind the counter, from having gone to the hospital so often. Amanda was in 204, Bill in 213. He walked into his mother's room. She was alone, neatly tucked under a white sheet. He leaned over and whispered, "Hi! Hi, girl." Not even a groan, a stir.

Tears welled in Bob's eyes. Knowing exactly what he will find never prepares him. He took her hand and held it.

Then he went to see his dad.

"You look good," said Bob. "A lot better than a few days ago."

"I don't feel so good," said Bill.

"You know you've got a friend down the hall?" Bob asked.

"Yeah," said Bill. He quickly changed the subject.

"How you doing, Bob?"

"You didn't watch the Olympics? I ran the 100-meter race - in my car."

They chatted a while, and then Bob went home.

Inside the empty house, he retreated to his den and put on a video documentary about World War II, his passion.

Bob had the night off. He stayed home and enjoyed an empty house.

BILL HICKS CONTINUED to gain weight, and by Aug. 30 he weighed 137 pounds.

He was back home again, and Bob joked that his father had jowls and a pot belly. Earlier that morning Myall had served him pancakes and sausage, and Bill had forked down every bite.

Bill sat in his living room chair, scanning the newspaper, looking content. For weeks now he had been diaper-free, though he still could not walk more than a few steps and probably never would again.

Bill had watched the President's acceptance speech at the Democratic Convention the night before. The Hickses are bedrock Republicans.

"I like Clinton," said Bill. "I think he's done a good job."

Bob looked over from his chair.

"Will wonders never cease?" he said.

THE DOORBELL RANG on Halloween night.

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."

Bob opened the door and handed Snickers to the little ballerina and Batman.

Bob doesn't really hate Halloween. But he was miserable. Both his parents were in the hospital.

That morning, blood had come through his father's feeding tube. In the afternoon, Bob's father said something he'd never said before:

"Bob, I just want you to know I tried to be a good father to you. There's a lot I would have done differently, but I tried my best."

Bob thought that meant good-bye. Nearly three weeks later, his father is still in the hospital.

Amanda was also in the hospital on Halloween night.

Her foot had become infected, and doctors wanted to amputate part of it to save her life.

Bob wept. "After all she's been through, this poor woman won't even go to her grave whole."

Bob had choices. He could have the foot removed. Or, as his doctor told him, he could take Amanda home and let infection kill her.

Bob decided to go ahead with the surgery. He's glad he did.

"They say she can come home in a couple weeks. She'll probably outlive us all."