Grasping the inevitable: Students volunteer in hospice to understand death

  • Living
  • Wednesday, 12 Jun 2024

Sullivan says the experience has made her contemplate how she'll feel when she starts losing loved ones.— 123rf

"YOU think it will never happen to you, that it cannot happen to you, that you are the only person in the world to whom none of these things will ever happen," author Paul Auster wrote about humans' difficulty confronting our own mortality.

"And then, one by one, they all begin to happen to you, in the same way they happen to everyone else," Auster wrote in the opening lines of his 2012 memoir, Winter Journal. Auster himself died last month at age 77.

How can humans fully grasp the inevitability of our own death? It's a tough question to answer, maybe close to impossible.

Three Macalester College students who just finished a course called the Anthropology of Death and Dying don't have the answer. Their professor, who has spent much of his career studying death as an anthropologist and a former hospice nurse, doesn't have an answer.A hospice nurse doesn't have the answer. And a hospice patient with lung cancer doesn't have the answer, even knowing he soon will confront its reality firsthand.

"I don't feel like I'm going to die yet – I always feel like I'm going to wake up," Michael Casalenda said.

Casalenda, 69, has been living for several weeks at Our Lady of Peace Hospice in St Paul. He volunteered to be interviewed and offered to answer any questions he could.

Casalenda is still struggling with accepting death, he said. Is he ready?

"I'm not," he said. "I want to continue living."

Laura Sullivan, 21, wasn't sure what to expect from volunteering in a hospice. When she mentioned it to her family, they worried that volunteering would be sad or hard for her.

It hasn't been.

"I've just really enjoyed my time there," Sullivan said of Our Lady of Peace. She appreciates that the staff believes patients "deserve to have whatever's going to make them happy in their final weeks and days."

Sullivan rarely thinks about her own eventual death, but said the experience has made her contemplate how she'll feel when she starts losing loved ones. "It makes you appreciate the moments you get to spend with your family."

Like Sullivan, Vyen Hayag, also 21, thought little about death except as a terrifying prospect. But after spending time at Our Lady of Peace, she said, "it's not as scary as it originally seemed to be."

"It has honestly made me more comfortable with it," she said.

Paige Tomer, 22, has been seeing a patient who rarely speaks and may not remember her from one visit to the next. Sometimes the patient talks "to someone who's not there," Tomer said. But she's discovering that the patient doesn't necessarily need comfort in the form of words.

"I didn't know how important a comforting presence was in end-of-life care," Tomer said. "It's more comforting than it sounds like it would be."

Understanding compressed time

Anthropologist Ron Barrett tries to help his young students understand the sense people get, as they grow older, of time becoming more compressed. After all, one year is 5% of a 20-year-old's life, but less than 1.5% of a 70-year-old's.

"I tell my students – because I don't want to scare them too much – I give them a scenario for their mortality: Think about life as a summer vacation; next thing you know it's the end of July," said Barrett, 61. "I try to give the students a time frame that they can relate to. If I give them the whole life thing, students are like, 'Yeah, OK, boomer.'"

A former nurse, Barrett worked in an intensive care unit and at a hospice. He also conducted field research for his doctorate on the Aghori in India, a Hindu monastic order that observes unusual rituals around death and focuses on treating leprosy.

Although students' volunteer work lets them watch the process close up, he doesn't expect college students to fully understand death's inevitability.

"I don't think we're ever cured of believing in our immortality – that's something we talk about at the beginning of class," Barrett said. "We're still going to deny our deaths."

Barrett's class exposes students to perspectives on death in different cultures and eras. In the 20th century, death in the United States became more likely to happen at older ages and in hospitals, compared with the first few hundred millennia of human existence, when people were more likely to die young and at home, making it at least a more familiar event.

"I think there was a better, more realistic view on mortality and it was more part of life," he said.

But recent improvements in pain management enable more people to spend their last days outside of hospitals, he said. "We have institutionalised the dying process – we're working our way out of it now."

In each class session, students gather in a circle to talk about their experiences with hospice work. They have gained an understanding of how their very presence – "just being there" – can be of comfort to people who are nearing death.

And he hopes that students will experience a change in attitude that Barrett has noticed in himself from his own studies.

"Being able to focus on what's really important ... I find myself less caught up in conflict," he said. "You tend to swear a little bit less."

Denise Borglund has enjoyed her more than eight years at Our Lady of Peace Hospice, where she is assistant director of nursing.

"It's different than anything I'd ever done in the past," said Borglund, 49. "I just feel like this end-of-life process is so important, and I don't think we as a society think enough about it."

Like Barrett, Borglund said being around people who are dying has made her more relaxed about minor annoyances. "I don't get upset about things that are out of my control," she said. "I try to find inner peace."

The most common stay in the 21-bed facility is just one day, she said. Stays rarely extend beyond 30 days, she said. But deaths differ widely.

"Some people want to be able to stay as alert and conversational as they possibly can; some people are more concerned with having their pain managed and are OK with being less alert," she said. Some people eschew palliative care because of religions beliefs that death is naturally accompanied by suffering.

"Some people that come here, they are so ready" to die, she said. Others are terrified. The difference doesn't necessarily depend on age. "You'd assume a 90-year-old would be ready." But not always.

"Everybody's journey is just so personal," she said.

Beating the odds

Casalenda feels fortunate in many ways. He has been at Our Lady of Peace Hospice since March 23, beating the statistical odds. He has a big room that, with its cluster of upholstered furniture in addition to the bed, looks more like it belongs in a luxury hotel than a medical facility.

"It's a very nice place to be," he said. "I'm holding my own. I have some pain, but they [the hospice staff] take care of that."

He gets plenty of visitors, and they "never come empty-handed," he said, noting a scattering of chocolate Easter egg candies on a table. He's up and around, using a walker when needed for longer distances. He talks freely, often with muted cheerfulness.

A retired electrician who has lived in South St Paul, Casalenda was diagnosed with lung cancer 2½ years ago. Chemotherapy was getting increasingly tough to endure, and it wasn't expected to extend his life by more than a matter of months. He called it off.

"It was just too much physically for me to handle," he said. "The wife and I talked, and we decided I'd get into a hospice situation."

He spends a lot of time thinking, finding his situation a bit "surreal." As a Catholic, Casalenda believes in Heaven and expects to wind up there.

"I've had a good life," he said. But dying? "It's hard."

He paused. "I knew it was going to come."

His voice broke and he stopped talking for several long moments, wiping his eyes with a handkerchief. But he said he wanted to continue the conversation.

Casalenda is especially saddened by how hard his death will be for his family, his two children in their 40s and his wife, Deborah, of 46 years. "You love them so much."

His extended family already has endured more than its share of grief, with Casalenda's father, aunt and uncle all having died in recent months.

He still gets out of bed every morning. His wife arrives and they turn on the TV. They sit watching it, comforted by each other's presence.

"I wish I had more time," Casalenda said. – Star Tribune/Tribune News Service

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