Maria Pacelli remembers sitting at her father’s bedside as he took his final breaths. She was in college at the time and had, coincidentally, been taking courses on death and loss.

She and her brothers held a vigil for the final four days before her father’s death and witnessed his last moments together.

“As heartbreaking as it was, and believe me, I wailed when my father left us, it was also stunning and comforting,” she said. “Sacred is the only word I have for it.”

Even in the depths of her grief, something within Pacelli bloomed. She knew that, eventually, she wanted to get involved with hospice and find a way to help others in similar states as her father. Even as life got busy and she raised three children, Pacelli never lost her desire to work with the dying.

Now, decades later, she dedicates part of her week to volunteering with hospice patients in the Concord area through Granite VNA. She goes to their homes, sits with them, maybe reads if they want her to, practices Reiki, and just listens when needed. Sometimes she holds bedside vigils for people dying who have no one to sit with them.

‘The difference I canmake in the world’

Pacelli has become familiar with last breaths and final moments, but for her, it’s part of that experience of sacrality.

“It’s an honor. It’s a privilege to be part of that in any capacity. It’s the difference I can make in the world,” she said.

Death reminds her of birth in some ways, moments where life passes from one form to another.

“I feel that I’m in the presence of something ‘more than,’” said Pacelli, who feels a particular affinity for working with dementia patients and those with intellectual and developmental disabilities.

Her mother had dementia and received hospice care at the end of her life. Pacelli recalls the immense comfort it brought her mother – and her family – to have such personal care.

“It doesn’t phase me in the least to speak with or to join someone in their world, whatever it is, and to be in there with them,” she said. “Not everybody chooses this work, and the people that choose it do so because it’s a calling and they are committed to that calling.”

Some cases prove more emotionally tolling than others. Pacelli lets herself cry when she needs to or take breaks from working with patients. But she finds her way back to hospice volunteering each time and leans on other volunteers for support if she needs it. One resource has been Lisa Challender, who serves as Granite VNA’s hospice volunteer coordinator.

Challender manages around 130 volunteers. She trains them in building skills to foster patient interactions. She also helps them navigate the emotional intensity of their work while developing self-care strategies along the way.

“We talk a lot about how it’s not about them, it’s about the patient,” Challender said. “It’s about how can volunteers support the patient and keep that boundary as far as their separation in terms of ‘This is where I end, and this is where the patient begins.’”

Challender started her journey as a hospice volunteer 15 years ago after she visited her grandmother in a nursing home in Florida.

“She said to me, ‘Thank you for visiting. I didn’t think I was worth it.’ I thought to myself that nobody should be at the end of their life, and think that that period of time has no meaning,” Challender said.

After training as a volunteer, she decided to get her masters in social work, eventually stepping into her current role. Working in hospice has given Challender a deeper appreciation for life itself.

“That’s what this work does,” she said. “It makes you very much think about your own self and your own life, and it certainly deepens your appreciation for the fragile life that we have, and how it could be taken away at any time.”

It takes a team

From volunteers, nurses, social workers, case managers, spiritual counselors and more, those who contribute to hospice care work together to make the process meaningful.

Letitia Borelli, whose father passed away at the Granite VNA hospice house in Concord last December, still thinks about the team of people who ensured his comfort and guided him through his final days. The house serves patients who need an additional level of medical care but still want to be in a home-like setting.

“It’s not easy, but they made it a little easier,” Borelli said. “The care he received was beautiful. It was amazing. It was what our family needed. They didn’t just care for him, they cared for us.”

She works as a home care manager for Granite VNA and has gained a newfound perspective on what such personalized care can do for a patient and the people around them.

“Being in healthcare, you give your everything. You really do. Nurses give their everything to their patients, and they have more than one, so they are giving their everything to every patient and every patient’s family,” Borelli said.

Those who work at the hospice house make extra efforts to create that home-like feel for patients and families.

Suzanne Rapoza, hospice house manager, recognizes how impactful this can be for people. She, like Pacelli, views her role as a calling.

“Your heart serves. I’m just so happy to be part of this,” she said, tears in her eyes.

Rapoza gets to know the patients at the hospice house on an individual level and builds connections with the family and friends who visit.

“We’re just, I don’t want to say an unknown resource, but a gray area for people. We’re trying to do more in educating and making people feel comfortable with using us as a resource in the community,” she added.

Overcoming fear, together

‘Hospice’ is a scary word, social worker Jennifer Rydeen acknowledged. She works for the VNA of Manchester and Southern New Hampshire and spends her time connecting patients and families with resources while offering emotional support.

“It’s a very vulnerable piece of life that people are entering, and it’s a part of life that we know nothing about,” she said.

Hospice workers become professionals at guiding people through the process of death, work Rydeen acknowledged is challenging, but also “very rewarding and compassionate.”

“I work with my whole heart every day. I give of myself to people continuously, because it’s probably the hardest part of our life,” she said.

She frequently tells people that she wants her visits to be about more than gloom, fear and sorrow.

“Yes, it is all of that,” Rydeen said. “But there’s some beauty in this too. Our role is to provide that quality of life for you and find the beauty even in the midst of where we’re at. How can we help you do that? How can we come and bring joy into your life when we’re here?”

Hospice team members hope that their presence alleviates some of the burden of the unknown by anchoring patients in the present and taking each day as it comes. They help patients reconnect with small moments of joy, be it a food they enjoy, a song they want to listen to, or a story they want to tell.

For one of Pacelli’s patients, someone she visited for over a year, this joy meant watching The Price is Right together. Now, even after the patient’s death, Pacelli still thinks about him whenever the show comes on. The patients she spends longer stretches of time with become the ones who most linger with her after they’re gone. But every case is different and some affect her more than others.

“Sometimes I think about how I am able to do it. The person passes, and I’m OK,” she said.

After both her parents’ deaths and in her years volunteering with dozens of patients and their families, she hopes to help others realize that hospice doesn’t have to be scary. The earlier people take advantage of it, the better their quality of life can be, she emphasized.

“Especially in this country, we don’t face death,” Pacelli added. “Other countries do death better. We turn from it and make ourselves look younger to look further away from it. We don’t teach about it. We don’t have grandparents dying in our homes. We just don’t talk about it. Hospice helps bridge that gap.”

Rachel Wachman can be reached at rwachman@cmonitor.com.