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Going Home
By Barry Yeoman, January & February 2005
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When Fox Chase's Debbie Seremelis-Scanlon met the Smiths for the first
time in November 2001, she found a family whose high emotional idle had cranked
up to a frantic rev. At 63, Jack had already completed treatment for lung and
bladder cancer with few complications. The first time, after his surgery, he
threw a "goodbye, lung" party and kept right on smoking. But this new
illness, a rare soft-tissue sarcoma first discovered in his esophagus, had
taken a deeper hold on his body. His life had become a revolving door of chemo
treatments and hospital discharges, and he dreaded each new round. He looked
like a skeleton. He had pneumonia. He had trouble swallowing, and his feeding
tube leaked. When he grew delirious and the hospital staff tied him to his bed,
his family had had enough. "I felt so angry over what they did—the
hole in his stomach, this bag of bones that looked nothing like my
father," says Melissa Kuchler, the younger of Jack's two
daughters.
He wasn't getting any better, nor would he. Still, when
Seremelis-Scanlon suggested hospice, the family was torn. Melissa and her
brother, Matt, wanted to stop the treatment and bring him home. "I wanted
not one more needle put in that man," says Melissa. "Not one more
ounce of pain." But Danielle, a medical assistant in the oncology
department of another hospital, wasn't ready. "I just didn't want
him to die," she says. "I said, 'There's got to be something
else you can do.' I thought if we went on hospice, there was no turning
back, like we were saying it's okay to die. It's not okay to
die."
For her part, Peggy Smith didn't really understand what the nurse was
suggesting. "To me, hospice was when you admitted you were dying and that
was a final decision," she says. "I thought they would check up on
him occasionally and take his blood pressure." Delicately choosing her
words—she saw the family's frustration—Seremelis-Scanlon
explained to Peggy that the program was far more comprehensive and that Jack
could change his mind anytime. At this, Peggy did a double take. "Did you
say that if he feels better, he can resume treatment?" she asked.
"Absolutely," the nurse said.
Jack himself made the final decision. "I've had enough," he
declared.
Immediately, hospice went into motion. A hospital bed and a small oxygen
machine arrived at the Smiths' home the day of his enrollment. A team of
experts began meeting weekly to discuss Jack's care. They brought him
morphine for pain. A social worker talked with the family about how to explain
death to the grandchildren. Every weekday, an aide came to bathe Jack, wrapping
him in towels to keep him warm. She massaged his back, changed his sheets,
chatted with him. "It was like she was caring for someone in her own
family," Melissa says.
As Jack rested at home, his pneumonia cleared up and he began to return to
his old self. For a while he was able to climb stairs. The family celebrated
Thanksgiving together, then Jack's birthday. Friends visited him in the
basement hideaway, where they'd smoke and reminisce—"like a
living wake," his wife says. And Jack, a man not usually given to
introspection, began settling up his emotional debts.
"My father totally opened up and changed," Danielle says. "He
would say things just to get them off his chest—family
secrets—because he didn't want anything left unsaid." For the
first time, Jack regretted aloud that he and his brother didn't have a
closer relationship. He wished, too, that he could have been a better father.
And he reflected on what a homebody he had been, even when Peggy was itching to
go out. "I wish I could have done more things with your mother instead of
giving her a hard time," he confided to Danielle. Still, whenever he saw
one of the women in his family break down, his toughness came back to the fore.
"Knock that off," he'd say. "What the hell you crying
for?"
"That last month of his life," says Peggy, "was
incredible."
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