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Personal grief directed her toward becoming an end-of-life doula

Susan Capurso became an end-of-life doula after experiencing

Susan Capurso became an end-of-life doula after experiencing personal grief -- the death of her husband in 2014 and of other loved ones in the 24 months following his death. Credit: Veronique Louis

As she watched her husband die from complications of the flu six years ago, Susan Capurso was filled not only with anger, heartbreak and anxiety, but with need. Realizing that Jim, 52, was just hours from death, Capurso called in their two sons, then 18 and 23.

“I started getting a little anxiety. I wanted somebody to be there for me,” recalled Capurso, 55, of Holtsville. “I needed details to tell my boys. I needed them to know the process about what was going to happen in the next few hours.”

Unfortunately, she said, there was nobody there to help her.

“I remember walking in and out of the room and up and down the hallway, and I’m just looking for a doctor or for somebody to come and tell me the process,” Capurso said.

Afterward, as she was mourning her husband’s death, Capurso faced the death of one loved one after another.

“Over the next 24 months, I lost my mom, my sister, my brother, my cousin, my best friend, my two neighbors who I was very close with,” she said.

Through each person’s death, she thought something wasn’t quite right, that the entire experience should have been handled better.

At the same time she was grieving so much loss, Capurso said she was becoming increasingly dissatisfied with her position as a consultant at a flower retailer. “I knew I had so much more in me. There was something so missing,” and she began a search for a more meaningful, less stressful career.

Finding a calling

Googling the top “peaceful careers,” Capurso found an article that ranked something called end-of-life doulas as 7 out of 10.

End-of-life doulas advocate for and provide emotional and spiritual support for the terminally ill and their families. Their work acknowledges that as people approach the end of life, they often feel frightened, angry and utterly out of control — and their families don’t fare much better emotionally.

They work wherever their patients are — at home, in hospitals, nursing homes and hospice. While both palliative and hospice care endeavor to provide comfort, an end-of-life doula is complementary to those services and helps provide an emotional framework. 

“That’s when I knew this was calling me. I wasn’t going out searching for this,” she remarked.

Since completing a six-month certificate course in September 2018 at Doulagivers in Manhattan, Capurso is recognized by the Hospice and Palliative Organization, based in Alexandria, Virginia, as an adjunct to medical and hospice teams. She also serves as an adjunct professor at Stony Brook University Hospital and volunteers at East End Hospice in Westhampton.

“There are things that you can put into place to help your life come full circle, to celebrate the end of life,” she said, adding, “Even the people who had a diagnosis and knew that their end of their life was coming, they were too afraid to talk about it. Families don’t talk about it. They kind of push things under the rug in denial or in anxiety and fear,” she said.

Capurso gets referrals from medical professionals she knows and from families she’s worked with, though her services aren’t covered by insurance.

These days she sees her work as ever more essential.

“Twenty percent of seniors now have no children,” she said. “We’re going to need the help in the coming years. And hospice and medical teams can’t do that. They come in and do their job, but they have to leave.”

Celebrating the end

As an end-of-life doula, Capurso spends time with patients to help them write down their reminiscences, thoughts and feelings, record their stories in audio and video, make scrapbooks, and visit places imbued with meaning for them. At the same time, she works with family to help ease their grieving process. When possible, she works together with patients and their families.

Recalling a 40-year-old man with Stage 4 colon cancer who had a wife and two young children — and who died before his scheduled appointment with her — Capurso said she understands the difficulty facing a dire diagnosis.

“But he’s no longer hurting,” she said. “Who’s going to hurt in their lifetime? You know, it’s their children. They’re never going to have that connection. They’re never going to feel relief they could have had from their dad.”

Last summer, Capurso worked with Roberta Krais, 70, until her death about seven months later, helping her fulfill some of her life’s wishes. Capurso took Krais to visit the Port Jefferson beach she loved and helped her experience a rainforest through virtual reality. Sharing her insights into the signs and stages of dying with the patient and family, Capurso said, “It takes away fear. It takes away anxiety."

Ruth Kessman, Krais’ niece, said she feels indebted to Capurso.

“Helpful is not enough to describe what she did for my aunt and for all of us,” said Kessman, 43, a CPA who lives in Woodbury. “It was just too overwhelming and too painful for my mom [Krais’ sister] to see her all the time and to deal with all the things that had to be dealt with. It took such a weight off our shoulders knowing that Susan was going to see her and spend such quality time with her.”

Noting that Capurso spoke at her aunt's funeral, Kessman said, “Susan is just a beautiful, loving soul. Every time I spoke to Susan, I said ‘You’re doing God’s work.’ It really is — to be able to sit and hold the hand of the dying, I have no words for that. And what it did for the rest of us, knowing that Susan was there, it’s incredible.”

Updating the family on Krais’ condition and decline, Capurso showed extreme sensitivity, Kessman added. “She knew who could hear and who couldn’t hear it. My mom: It was better for her to hear less,” Kessman said, adding, “What she really did was turn it from something scary to something peaceful.”

In addition to helping Krais fulfill her bucket list, Capurso said she explained the processes Krais was going through to help ease her worries and achieve a sense of closure. “I think people need to do that before they pass,” she explained. “They need to know that their life meant something. And to accept that it’s what happens to all of us and it’s OK to let go.”

Capurso said that to her work as a doula she brings creativity and her “invisible tool box,” as she refers to her skills to helping clients write cards and letters to loved ones, have a life celebration, perhaps tell stories and play music. There might be theme nights to honor individual desires, such as a Mexican food-themed party for the patient and family, and family vigils during the last days and hours of someone’s life.

Even with extensive preparation, Capurso said, it can be hard to accept the inevitability of death. “Of course, you go through sadness,” she said. “And you go through anger. This is a shock for anybody.”

Ideally, a doula comes in to someone’s life once they get a terminal diagnosis and possibly have about six months to work together. Capurso begins by working in three-hour shifts, starting at once a week and increasing her visits as needed. Her fees work on a sliding scale, she said. 

In living and in dying, Capurso contends, “We should be the best we can be and bring the most positivity.

“It doesn’t have to be sad and scary. It can be warm and peaceful and more celebratory, but only if you preplan a little bit and only if you’re a little more mindful.”

Creating a legacy

Another aspect of Capurso’s work involves helping people — not necessarily those who are terminally ill — leave a creative and/or spiritual legacy.

“It’s getting all of the important creative things in place, to help your family and to help yourself at the end of life,” Capurso said, referring to videos, letters, cards, event planning, gifting, making amends and conversations she helps facilitate.

At workshops for people from middle to older age, Capurso uses prompts from her book “Remember Me: The Story of My Life” (Red Penguin Books, 2019) to transport people back to the different stages of their life.

At a recent workshop at Gurwin Jewish-Fay J. Lindner Residences in Commack, Capurso asked eight women, most of whom were over 90, to reflect on their childhood bedroom at the age of 5.

“One of them said, ‘Are you kidding me? I can’t remember anything that happened before I was 50,’” Capurso recalled.

At first, the women resisted, but before long, the room grew silent. 

“And then, all of a sudden, they all picked up the pens and they all start writing. I just got chills up my neck because they started laughing, they started talking, telling stories,” Capurso said. 

“The memories were there: They needed to be stimulated and they needed to come out.”

Capurso’s nine-week group workshop, which costs $75, begins with a three-hour in-person session. Over the next eight weeks, she emails participants goal-oriented prompts so that each person can complete their own book. In the ninth week, they get together and discuss the process.

Linda Fostek, 68, of East Northport took one of Capurso’s nine-week legacy workshops in October at South Nassau Unitarian Universalist Congregation in Freeport in which the group worked to write the stories of their lives.

“I relate to this so much,” said Fostek, noting that her husband died 21/2 years ago without creating his legacy.

“Now that he’s gone, the stories are gone with him,” said Fostek, who runs a crisis management business. “There’s literally almost no evidence that he was here, and yet he was such an important part of the family history.”

These days, Capurso observed, people are interested in learning more about their ancestry through DNA testing. “But the rich history that our families are going to want to know are more about us, and the things we do every day,” she said. “And the careers we had, and most of us don’t know anything beyond our grandparents, if we even know their full story.”

Fostek agrees. “It’s so much more than DNA,” she said. “It’s the stories of the people who came before us. It just gives you such grounding and such an amazing way to connect with the past and also understand who you are and how you became who you are.”

Capurso see her work as particularly vital in a culture dominated by electronic devices and diminished interpersonal connections. “We need to strengthen our bonds with one another,” she said, adding, “Knowing our ancestors strengthens these connections, validates our existence, gives us roots and the heritage we all deserve.”

CORRECTION: An earlier version of this story misidentified the Gurwin facility where Susan Capurso gave a workshop. The workshop was at the Gurwin Jewish-Fay J. Lindner Residences in Commack.

When an end-of-life doula can help

Susan Capurso, an end-of-life doula who has self-published the digital book “Before You Go” and “Remember Me: The Story of My Life” (Red Penguin Books, 2019), identifies three phases of the end of life and how a doula can help:

  • The Shock Phase: when patients and their families go through a range of emotions, from anger to anxiety, to despair and denial. A doula can bring calm and peace into the setting and support everyone through the process.
  • The Stabilization Phase: when the patient’s pain is typically under control and the family is ready to work together. This is the time when Capurso begins her legacy services, and they plan life celebrations and work toward acceptance on everyone’s part.
  • The Transition Phase: the time just before the end when a person transitions from life to death. A doula helps identify the signs to the family and can stay with the patient through the last days.

For more info, visit eastenddoulacare.com or thelegacydoula.com, or call 631-946-8100.

— Arlene Gross

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