Kropf had gone through 12 weeks of hospice training—learning about diseases and how to deal with the emotions of hospice patients. He admits he has had a hard time dealing with some patients with Alzheimer’s disease. “It’s hard to communicate,” he says. That was no problem with Novel.
The two men started out moving lathes and saws, but whenever Novel felt up to it, they ventured farther afield. One day they went to a classic-car dealership, and Novel took a car around the block for a test drive.
Rabbi Judith Brazen became part of Novel’s hospice team. Every hospice program offers chaplains of different faiths who provide spiritual comfort for patients and their families if they want it. Novel’s family didn’t feel the need for support, but he did.
Brazen tries to follow whatever beliefs patients and families have found meaningful. She looks for rituals that have given them strength and peace. Sometimes that involves healing old family wounds. A lot of times, people want to talk about the possibilities of a hereafter.
“When medical hope is no longer feasible, I offer a different kind of hope, a hope that extends the meaning of our finite lives,” Brazen says. “We can find ways to express appreciation for the joys they’ve experienced and lives they’ve lived even in the face of loss.”
Novel felt a spiritual connection with nature, Brazen says. One of the passages he loved was by Terry Tempest Williams:
I pray to the birds.
I pray to the birds because I believe they will carry the messages of my heart upward.
Last June, Novel had his second chemoembolization at Hopkins. This time, his reaction was more severe. He had hiccups for five days and couldn’t sleep. The drugs he took to help with the hiccups caused him to hallucinate. “I thought ants were crawling all over me,” he said.
As the illness progressed, his hospice team grew to include home health aides. He needed help with bathing, dressing, and moving from one level of the house to another. But he was making the decisions. He could recognize the signs that he was in for a bad day or week. He could tell within 20 minutes whether his pain would be severe enough to require liquid Atavan to supplement the morphine.
Novel always expected to bounce back from these episodes—and for months he did. I would get a call from someone on the hospice team telling me things were looking bad, and by the time I got out to see him, he was sitting on his living-room couch telling me he’d been out on the golf course. That spring Novel made it to Rehoboth, where the family has a little modular house. One of his neighbors had been Mr. Wilmington 1949, and he now offered to give Novel bodybuilding advice.
One of the challenges for a patient’s family is the out-of-character behavior that a combination of drugs and disease can cause. In September last year, Ken Novel ran away from home.
A client had given Theresa a bottle of Merlot to celebrate Rosh Hashanah, the Jewish new year. She drank a couple of glasses with dinner, gave Ken his medications, went up to their bedroom, turned on the TV, and fell asleep. When she awoke at 9:30 pm, Ken wasn’t in bed. He was spending his days in a hospital bed in the den, where he could look out at the birds he loved, but at night he went upstairs to their bedroom.
Theresa called out to him, and he responded, “I’m online buying a car.”
Ken then packed a bag and walked out of the house in his pajamas.
Theresa called Sylvia Glaser in a panic. “What do I do?” she asked.
“Follow him,” Sylvia said.
Anthony had just gotten out of the shower. By this time, his father was blocks away. Barefoot, Anthony grabbed his cell phone and ran after him. Theresa followed, then doubled back to get the car.
She pulled alongside Ken and tried to get him into the car. Anthony urged her to go home. Her talking only seemed to make Ken angrier. Then the car died.
“Anthony, go home and call AAA,” Novel said. Finally, Anthony persuaded his father to go home. A hospice aide was there to help him get settled in.
The tow truck arrived at 10:30. By 11:15, Novel was quiet. The hospice aide left, but Theresa couldn’t rest. “I was still so mad,” she says. She heard a knock at the front door. It was a neighbor in her nightclothes asking if she could talk to her. Theresa didn’t know the neighbor’s name.
“I know you’ve been having a hard time,” the neighbor said and handed Theresa a check for $2,000.
Six years earlier, the neighbor’s house had been ransacked. The Novels noticed strange cars near the house and wrote down the license-plate numbers. Later they served as witnesses in court. But the two families had never talked again about the incident.
“I never said thank you,” the woman told Theresa.
Two weeks later Novel told me about that night: “I felt alone. As much as people are all around giving me so much attention and love, I still felt so alone.”
His liver was failing, and he had the beginnings of jaundice. He hadn’t wanted the hospital bed he was lying in. He had hoped he would still get some exercise.