“Anybody can do end-of-life care. You just have to be trained properly and understand how to care for somebody properly,” said Amanda Neveu, executive director of the Joan Nicole Prince Home.
With this motto in mind, Neveu released her first book, “Living With the Dying: The Journey of a Comfort Home,” on June 19, the 15th anniversary of the home. The book discusses the history of the Joan Nicole Prince Home, stories from residents and volunteers, resources on end-of-life care, and a dying person’s bill of rights, Neveu said.
“The model of comfort care homes is not well known, so I wanted to get our voice and our mission out there, and pair that with the stories of our residents,” she added.
Founded in 2006 with a large donation from the family of Joan Nicole Prince, the home in Scotia provides end-of-life care to two residents at a time. According to Neveu, the idea of comfort homes originated in Western New York, and hospice nurses in Schenectady County were inspired by the model of the comfort home model for the Joan Nicole Prince Home.
Anyone who is enrolled in local hospice, has a terminal illness, and has a prognosis of three months or less is eligible to become a resident at the home. Priority for residency is given to people with a caregiver struggling to look after them, or people in an unsafe living situation, such as living alone, Neveu said.
The home is free for residents, and run entirely on donations and grants. The majority of funds the home receives are memorial donations from family members and friends of residents, while they also receive money from periodic fundraisers, and donations from churches, said Neveu.
One key aspect of the comfort care home is its combination of hospice services and volunteer caregivers. The home’s 30 to 40 resident care volunteers work four hour shifts from 7 a.m. to 11 p.m., providing what Neveu described as “individualized attentive care.”
College students at Union, Saint Rose, Maria College, and SUNY Schenectady are frequent volunteers at the home, as well as retirees, or people with 9 to 5 jobs, Neveu said. In addition to the resident care volunteers, the home has four paid employees – Neveu, the executive director, and Toni Warren, the assistant director, and two residential coordinators. They also have non-residential care volunteers who complete tasks such as gardening, lawn care, maintenance and other duties.
Libby Horn, a retired family nurse practitioner and residential care volunteer for the past eight years, said she typically works two to three, four hour shifts at the home each week. A typical shift includes preparing meals and snacks, administering medications, cleaning, and most importantly, keeping the residents company, Horn added.
“The most rewarding part is to see that people can die comfortably, and let go of life in a graceful way. So many people are afraid of dying, and working with hospice helps you not be afraid of dying,” Horn said.
According to Neveu, another important aspect of the home is that it can relieve the burden for family members of residents who previously had to be caregivers. “When somebody comes here, we encourage their family members to be a son, daughter, or niece again, because they don’t have to be a caregiver anymore,” Neveu said.
Guilderland native Suzanne Wilber, whose mother spent time in the home, said “she got the best care. She was cleaner, and people paid more attention to her than when she was in the hospital in Kingston.”
Since her mother’s time as a resident, Wilber has volunteered at the home, doing the weekly grocery shopping. “I have no words for this place. It’s just so amazing,” Wilber said. “When I walk through the front door, I get an inner peace that I can’t explain to anybody.”
For Neveu, who has been executive director for two years, and involved with the home in other capacities for three more years, the donations and community support they received during the pandemic were uplifting. “Everybody was so compassionate, giving what they could,” she said.
Neveu said she hopes her new book will give people in the Capital Region more information about what comfort homes are, and how they can provide their loved ones with appropriate end of life care.
Jeffrey Berman, distinguished teaching professor of English at SUNY Albany, also just published a book on end-of-life care, titled “The Art of Caregiving in Fiction, Film, and Memoir.” According to Berman, the comfort home model of places like the Joan Nicole Prince Home is a valuable way for people to feel loved and cared for at the end of their lives.
“It’s receiving medical care, but it’s also speaking with other people and not feeling socially isolated. Social isolation is one of the worst aspects of dying, partly because we live in a culture where death is not openly spoken about, and partly because there is so much fear surrounding the end of life,” Berman said.
Spreading the word about comfort homes, and showcasing the stories of the Joan Nicole Prince Home’s residents is the ultimate goal with her book, Neveu said. “Anybody that we can get to read this we would have made a difference in our community and for end-of-life care,” she added.
“Living With the Dying: The Journey of a Comfort Home” is available on the Amazon, Barnes & Noble and Joan Nicole Prince Home websites.