In good company
Caregiver and hospice nurse shared the emotional wind-down of Capt. Don’s life
By mid-October 2006, Donald P. Leslie—Capt. Don to those who knew him—had been in hospice care for a month and a half. He had been referred by his doctor after turning down radical treatments for tongue and mouth cancer.
Capt. Don had been a circus performer—most notably a sword swallower, fire breather and tattooed attraction. At age 13, he started smoking cigarettes, a habit he would keep to his dying days. By 19, he was pouring white gas into his mouth so he could breathe fire. He’d noticed the warning that the gas caused cancer, but hadn’t heeded it.
By autumn 2006, when Capt. Don was 68, his cancer was in its later stages. Sores were visible on his neck, though he kept his beard thick and they were difficult to see. Treatment was no longer an option—it likely would have killed him.
Kristen Swain, a good friend for nearly a decade, had offered to care for Capt. Don till the end. She had already been through the process, working with hospice—though not Enloe Hospice—to care for her father-in-law.
Taking on the caregiver role added quite a load to her already-busy schedule. She was going to school at Butte College, hoping to get her degree in nursing. On weekends she worked for a local catering company. At home she had a 2-year-old son, Cohen.
Despite the challenges, Swain knew she was the best one for the job. And if it allowed Capt. Don to die on his terms, she was up to it.
Shannon Fuller became acquainted with Capt. Don, Swain and their whole little world at the end of August. After 15 years with Enloe Hospice, she was familiar with the dying process. She would pass her knowledge on to her new patient and his caregiver in the coming months.
Fuller’s main goal—and the goal of hospice—was to make the end of Capt. Don’s life as comfortable as possible. To do that, she had to take into account what was important to him. One of his priorities, for example, was to die with Little Dog, his beloved Jack Russell terrier. He also despised medications that made him sleepy or loopy—they reminded him of his days as an alcoholic, which ended more than 25 years ago. And his biggest fear was choking to death.
So, over the ensuing months, Fuller would work with Capt. Don to meet his needs and keep him out of pain, while also taking into consideration the life and emotional necessities of Swain. The three of them would meet once a week, give or take, and build a relationship of trust that would make the process easier and more fulfilling for all involved.
October was a big month. Two of Capt. Don’s three sons, Don Jr. and Daryl, came to visit, adding some stress and a different dynamic to the one-bedroom apartment Capt. Don called home. Don Jr., the oldest of his four children, was in Chico all the way from Finland.
Something about bringing the Leslie men together caused a good bit of bickering. Strained relationships with his children when they were growing up added a layer of unspoken stress to the visit. But the boys—actually grown men, 42 and 34, respectively—were seeing their father for what could possibly be the last time. They had their unfinished business; he had his.
In addition to nursing, Enloe provided a social worker who made infrequent visits but was available by phone or to come in person more often as needed. Even beyond the paid staff were hospice volunteers. During October, Capt. Don met Colin, a nice man close to his age (Don was clear he didn’t want a young man) with an eye patch who loved to talk.
“I thought, ‘You won’t be able to find anybody for me,’ “ Capt. Don joked. His voice was raspy and his speech slurred but still clear enough to understand.
“He thought we were sending someone to preach at him,” Fuller added. “But our job is to find someone who is a match.”
Capt. Don was a staunch atheist. The last thing he wanted was someone sitting by his bed with a Bible telling him this and that about their god. He needed a program that would show no bias—Enloe’s absence of religious affiliation was a significant factor for Swain and him.
“I wrote an exposé on Christianity, but it never got published,” Capt. Don said. He’d filled up notebook after notebook. Some of them would appear on his nightstand over the next few months. “I wrote it in nightclub dressing rooms, hotel rooms, motel rooms, you name it.”
“I knew you were passionate about your atheism, but I didn’t know you were that passionate,” Fuller said, genuinely amazed.
With November came shooting pains up the side of Capt. Don’s neck. They only lasted a minute at a time, but those minutes were some of the most painful he’d complain about. Fuller ordered Neurontin, a liquid medicine that targets nerve pains.
With every new medication, Fuller gave a detailed description of when to use it, how often and what Capt. Don could expect from it. Often, she would repeat the instructions to refresh his—and Swain’s—memory and remind them what they had at their disposal.
“And you can always call us—don’t hesitate,” Fuller often told Swain. She meant it.
Toward the end of the month, Swain made a call requesting a second visit in a week. (Fuller usually came on Tuesdays; this was a Friday.) Her nursing partner, Juliette Rossiter, made the trip since it was Fuller’s day off.
Capt. Don had had intense dreams—he even called them nightmares—about his dead parents visiting him. He wanted them to go away.
“For someone who has invested much of his life into atheism, that can be pretty scary,” Fuller said the next week. He had been given some medication to calm his sleep, though until his final days he would describe detailed dreams of food.
“I have dreams of going over to Outback Steakhouse and ordering everything on the menu,” he said. Of course, being on a more-or-less liquid diet would make chomping down on a juicy steak or rack of ribs impossible. So the thought of them was torturous.
Luckily for Capt. Don, not everything in November was bad news. He received in the mail a copy of an unpublished story to appear in Skin & Ink magazine, written by his friends Madame Chinchilla and Mr. G. The article would run in the spring, but they wanted to make sure he’d get a chance to read it in case he didn’t make it that long.
He was intensely proud of the article, showing it to anyone interested. He was rightly proud, too. The spread covered 16 pages in full color, with detailed accounts of his life and tattoos.
When the issue—March 2007—hit the stands, he had a friend bring him to Barnes & Noble. He snatched up every copy the Chico store had so he could autograph them and hand them out as presents.
“I feel so honored—thank you,” Fuller said upon receiving a copy.
“You’re welcome, sweetheart,” he replied.
A phone call early one December morning before Fuller was set to visit warned her that Capt. Don was in an unusually bad place. It wasn’t his physical health this time, and there weren’t any nightmares. It was emotional: Little Dog had gotten away.
The night before, when a couple of friends were over—he had two beds in the living room so people could spend the night because he didn’t like to be alone—Capt. Don had borrowed their car to drive to one of the nearby casinos, despite his promise to not to get behind the wheel again. While he was gone, his friends got drunk and left the door open. When Capt. Don got home, his dear Jack Russell terrier wasn’t there to greet him.
“If I lost somebody’s dog, I’d be out there all night looking for him,” Capt. Don said that day from his bed, wrought with worry that his trusty companion—who he hoped would be by his side when he died—was lost forever. Those particular friends were no longer welcome in his home.
Other friends, Swain included, walked the streets posting signs with pictures of Little Dog, who hadn’t been wearing a collar. A woman called that day to say she thought she’d found him. The news calmed Capt. Don, who hadn’t slept all night and was ragged because of it, his long hair uncombed and greasy with all the product he’d put in it the night before. But he wouldn’t be truly calm until the little guy was back at home.
The phone rang. He jumped. “Hello?” Then he hung up.
“What, you didn’t want those encyclopedias?” Fuller joked. It took him a second, but Capt. Don cracked a smile, the first one that day.
Capt. Don sat in his room in anticipation, every footstep outside making him jump and ask, “Is that him?” After a few false alarms, sure enough, the woman who had called brought an excited Little Dog home. Capt. Don relaxed immediately, embracing his companion, who seemed just as relieved to be home.
Along with the departure and return of Little Dog, December also brought Capt. Don’s 69th birthday, on the 26th. He celebrated with his good friend Madame Chinchilla, in town from Fort Bragg, and two other lovely ladies, one of them a belly dancer who gave him a birthday show. He was on cloud nine.
The 27th, though, like most day-afters, found him exhausted. He could barely keep his eyes open during the day—still a night owl, he did most of his business in the wee morning hours.
By that time in late December, Capt. Don’s speech was recognizably more slurred. Fuller never did get a good look at what was going on inside his mouth—there was no reason for her to—but based on complaints that his airways seemed smaller, one could guess that there was quite a bit of swelling there. In order to swallow pills, he had to push them down the back of his throat with his finger, which was actually no big deal for Capt. Don.
“I killed the gag reflex decades ago,” he said with a smile.
“I guess that would make things easier,” said Fuller, who had moved her position from a chair to on the bed next to him to hear him better. She was testing his oxygen levels regularly, and although he was a heavy smoker, he was getting near perfect oxygen flow. But his breathing was obviously more labored, and it took more time for him to shift positions, which often left him gasping for air.
Fuller recommended steroids to reduce the inflammation in his throat. Added benefits: They would give him energy and boost his appetite. He wasn’t eating much those days, except for soup and milkshakes. Fuller was careful to not get too excited about the steroids, though, so as to not give Capt. Don, or Swain, false hope. There was a good chance they wouldn’t work.
Prednisone, it turned out, was like a magic potion for Capt. Don. The first week of January brought a major resurgence in his energy, liveliness, activity level and overall state of mind. He much preferred being awake to being asleep, so the energy was a huge boost.
Because the swelling had gone down in his throat, he was able to speak clearly enough to have whole conversations without anyone saying, “What?” Just the ability to communicate seemed to improve his spirits.
He loved to tell his stories.
“I borrowed the fat lady’s car,” he started, “and it was me, my date and another couple in the back seat. We were out on the beach and all pretty messed up—and we passed out.
“We woke up with the waves crashing over us. The tide had come in! Someone had seen us and a truck had to pull us out of the water.
“The car was ruined.”
He relayed a tale about driving a carload of monkeys from Boston to Florida, and one about being asked by a group of doctors to participate in a study of a form of X-ray that a person swallows. (They wanted him because of that lack of a gag reflex.) He had stories about big, burly men coming into the tattoo shop and requesting this, that and the other thing, then passing out upon seeing the needle.
The stories went on, and as long as he was able to tell them, Fuller would listen. She was fascinated by all the things he had done and the lifestyle he had led.
“When I tell people that I’m a hospice nurse,” she said, “they usually ask, ‘How do you do that?’ And I say, ‘I get to meet some of the neatest people.’ “
Enloe Hospice encourages relationships between nurse, patient and caregiver. In addition to adding a layer of trust to the support that they offer, that connection helps caregivers and families to know that they gave their loved ones the best care possible at the end.
“Being able to trust and care makes a difference in the memories,” Fuller said. “A lot of people look back [at the hospice experience] with pride.”
February and March brought few changes in Capt. Don’s condition. The Prednisone was still working wonders, though he acknowledged that “it’s not going to work forever.” Topical pain on his tongue and the inside of his lips meant the addition of a new drug, Lidocaine, which could be applied by syringe to numb the ache.
A few instances of headaches, which Capt. Don had never experienced, brought Vicodin to mind, and he had it in his stash just in case. But because of the aversion to feeling out of sorts, Capt. Don chose over-the-counter medications instead.
Nothing radical was happening with Capt. Don’s health, so Fuller’s hour-long visits became more about bonding and less about instructing. She sat casually at the end of his bed, cracking jokes and asking questions. And when she did recommend medications or seating positions for better comfort, the connection they’d formed gave her more authority. And vice versa, the better she knew Capt. Don and Swain, the better she could prepare them for what was to come.
These days were often filled with conversations about whatever book Capt. Don happened to be reading—about everything from religion to the circus to current events to real-life stories about kidnappings and murders. He was always willing to share what he’d written in the notebooks that often were lying around.
The sharing was mutual.
Fuller talked about her husband, an X-ray technician, and their four children—one boy and three girls. For spring break, she would be going on a school trip to Costa Rica with one of them. “I just learned I’m going to have to lead Mass one of the days,” she said. “I just hope I don’t have to do it in Spanish!” It was the first time she referenced her Christianity, and Capt. Don paid her the same respect she paid him about his atheism.
Swain told stories about the merchant marines and living on ships for a number of years. It turned out she’d had a more colorful life than her appearance reflected.
Meanwhile, the 35-year-old wife/mother/nursing student had grown increasingly busy with midterms and papers. Sometimes, if a caregiver spends too much time with the patient, marriages can suffer; school and work can suffer.
“Part of my job is to be aware of the things she’s not going to complain about,” Fuller said. “I help them set boundaries.”
“I don’t know how she does it,” Capt. Don said about Swain. “She takes care of me, she takes care of a baby and her husband. She takes care of her apartment and mine. She goes to school and she has a job. She’s superwoman.”
“And apparently you’re worth it,” Fuller added.
When April rolled around, Capt. Don had reached the eight months his doctor had given him to live. Frankly, Capt. Don was surprised he’d made it that long.
Don Jr. returned from Finland for a longer visit, which brought family issues back up to the surface. Capt. Don’s relationship with Swain, too, was strained. Pain and discomfort left him irritable a lot of the time, and he took it out on those around him.
On April 10, Capt. Don sent out a letter to all of his friends notifying them that he was ready to go; he planned to stop eating and cut himself off from the world.
“Some of you have commented on the (seemingly) effortless ease with which I’ve handled the reality of my eventual demise,” he wrote. “I must confess that this acceptance had an evolution to it. It was very difficult in the first five months or so, I am fortunate in the sense that I’ve been very low to almost absent of the excruciating pain this disease can deliver. Praise for that goes to the excellent nursing team at Enloe hospice.”
The letter, while complimentary to hospice, was a slap in the face to Swain, who was asked to type it, with her phone number included, and subsequently found herself on the receiving end of numerous emotional phone calls from Capt. Don’s colorful group of friends.
That next week, Fuller spent the majority of her time talking with Swain outside her apartment. She was in tears.
“I’m so tired of putting up with his abuse, his manipulations. I’m not his bitch,” Swain said. “He gets angry with me and says I’m not around enough, but I’m always here. The only time I’m not here is when I’m in class or at work.”
Fuller stood quietly, listening to everything Swain had to say. Capt. Don had gotten very upset when Swain asked him about medications, accusing her of not being there enough to know.
“It’s OK to set boundaries,” Fuller said. “Just don’t push meds on him anymore—he’ll take them if he’s in pain. And if he accuses you of not being there, just tell him, ‘I’m sorry you feel that way. I’m here now.'”
Swain liked that advice. A few weeks later, after a similar situation had arisen, she told Fuller, with a big smile on her face, “I told him, ‘I’m sorry you feel that way,’ and it worked! We moved on from there.”
Capt. Don didn’t end up starving himself to death, something that is very difficult to do, Fuller said. She’s known many patients who had tried the same thing—not eating was more uncomfortable than the pain they’d been in, so they gave up.
May began with what Swain thought could have been the end. Capt. Don’s breathing got worse and worse, until she was propping him up in crazy positions just to increase his airflow. He’d given up on Prednisone, and the tumors on his neck were noticeably more visible. They would probably have been more obvious if not for the beard and the fact that Little Dog helped lick them clean.
The lack of Prednisone also led to a decrease in energy. The bad days began to outweigh the good, and Fuller’s focus turned more from Capt. Don, who was rarely conscious during her visits, to Swain.
“If he has another attack like that, where he can’t breathe, he needs the Lorazepam. It will calm him down, which will help his airways to open up,” Fuller explained. And even though he’d been adamant about not using a morphine patch, she advised sticking one on him if it was a particularly bad night. It would ease the pain and discomfort considerably, and if he got really annoyed by it, he could always rip it off.
By the end of the month, he had two patches on him. And instead of weekly visits, hospice nurses came twice weekly—Fuller on Tuesdays, Rossiter on Fridays.
On June 4, around 7 a.m., Capt. Don bid goodbye to restless days. His business was finished, and he died quietly in his bedroom. Fuller, who had volunteered to be on call for his death, arrived at the apartment around 10 a.m.
“We lost him,” Swain said with tears in her eyes. Capt. Don’s longtime friend Lyle Tuttle was sitting on the couch. Another friend, Paul, who had camped out on one of the two living-room beds for months, was packing his things. It was time to move on.
“It’s the end of a fucking era,” Paul said over and over again.
While the two men were getting ready to leave, Swain let Little Dog in to see his owner one last time.
“A lot of times it helps animals to be good pets for future owners if they see the body and can say goodbye,” Fuller said. “They’ll know something’s changed and it’s time to go elsewhere.”
Little Dog had places to go, too. Tuttle had arranged for him to live with a family he knew that lives on a ranch.
Once everyone cleared out, Swain called the funeral home. Capt. Don’s body was wrapped in a sheet and put on a gurney, to be taken to the home, where he would be cremated. Fuller stayed with her the entire time.
“It was so hard to make that call, because once they took him away, it was real,” Swain said later. “And for the first week after, I was a mess.”
Three weeks after Capt. Don’s passing, Swain looked good. She was smiling, her blue eyes showing off their twinkle, as she talked about the last year and her experience with hospice—and Shannon Fuller.
“He would have been in a home without hospice,” Swain said. “And he was not the type of man to be caged up like that.”
Enloe Hospice, with its nurses and social workers and volunteers—Colin and then Joe, who was with Capt. Don almost to the end—had allowed him to die with dignity and independence. The relationship he and Swain had formed with Fuller made the experience that much easier.
“She was so great at putting him in his place,” Swain said. “Where I didn’t have a backbone, she did for me. When I wanted to kill him, she just let me vent. And then she would say, ‘OK, here’s what we can do.’ “
“I think Kris really learned a lot during this process,” Fuller said. “She learned how to set boundaries—and I think she’s a stronger person now than when I met her. Cohen had better watch out, because she’s going to be a great mom.”
Fuller said she considers Capt. Don’s case one of the good ones. She had enough time to build a relationship with both him and his caregiver, which helped her to help them.
For Fuller, life goes on. Patients come and go like foreign exchange students, only staying for a short while but bringing with them their personalities and a wealth of knowledge.
She’ll have her 16th anniversary with Enloe Hospice next month. And in December, she hopes to see Swain at the program’s annual night of remembrance, when people who lost someone under hospice care in the past year get together with everyone from the program to remember those loved ones.
For now, Swain is ready to move on, to be a good mom again and relax with her family.
“I keep seeing him as he was in the last couple weeks, all bitter and uncomfortable in that bed,” she said. “I’m trying to now think back to the person he was before the cancer—he was such a giving, wonderful man.”