Photo from Stone Presbyterian Church
When Ashley Manuel’s grandmother, Norma, was at the end of her life, instead of focusing on death, she was able to truly to live out her remaining days with joy and peace — and her daily red lipstick — thanks to a comfort care home atmosphere, Manuel says.
By comparison, her other two grandparents went into a hospital, where it was drastically different, with a sterile environment that was “scary,” uninviting and cold for visiting family.
That contrast has made Manuel, an independent end-of-life doula who trained with Crossroads House founder Kathy Panepento, a firm believer in comfort care homes. She will be a speaker for an upcoming Genesee Valley Regional Community Cares meeting about an initiative to get a second comfort care home into Genesee County.
The meeting is set for 7 p.m. Monday at Stone Presbyterian Church, 7549 South Lake Road, Bergen.
“So, in my experience in end-of-life care, and mostly with families and people who are dying, they don't feel like they have a lot of choices anymore. I watched them, the family, struggle with what do we do next. How do we handle this? And by having comfort-care homes and someone to come into your own home, or wherever you are at the time, a hospital, nursing home, and say, ‘listen, there's so much more we can do, and you can be an advocate in your own death.’ And I don't think even society knows that,” Manuel said to The Batavian. “I watched people who came through Crossroads House when they kind of would say, well, what is an end-of-life doula, you know, and what can you do that hospice can't or what can you do? And what I want people to understand is dying starts with the mental, so you start to process your death way before the body even feels it.
“As soon as someone gets a prognosis, that's where it starts. Whether you're in pain or your disease has pain, or you're just dying of old age, that's where an end-of-life doula, and that's where comfort care steps in,” she said. “I’ve done legacy projects. And life review and guided imagery. I mean, it's so beneficial. And when I first stepped into it, I was even skeptical of how much this could help someone. Because you can't fix it, right? Yeah, this is going to happen. But the more I worked with people and sat with them and got to know them and created a bond with them, I've done guided imagery and people's last breaths, and within minutes after I was finished, they were gone.”
That happened because the person became relaxed enough to do what’s necessary to die in peace, she said: let go. Her passion, coupled with a belief in the practice and philosophy of facilitating that for people, motivates Manuel to be part of this second comfort care home in some way, she said.
“I really believe that death isn't a medical event; it’s a social event. It's a communal event. We did it for years and years and years before there were hospitals before people started taking their loved ones to the hospital. When they were dying, they kept them at home. But because the medical industry has bloomed, I guess you would say, around the 60s and 70s … We now have organ transplants and medicines and curative treatments and such. And that's all wonderful and great, and it has saved many lives or extended life,” she said. “But there does have to become a conversation of, okay, that's not a possibility any more, where do we go from here? And that's where I think comfort care homes and people who are trained really well in end-of-life care can pick that up and say, ‘this is what we can do.’ And it's not just for the person dying, it's for the family around them.”
Genesee Valley Community is a group of local people, led by Stone Presbyterian Church in Bergen, with a desire to create a comfort care home to serve those suffering with end-of-life issues.
This project was first explored in 2019 by the Rev. Robert “Mike” Stuart, Louie Crocker, Keven Kent and the small but dedicated membership of Stone Church. Then Covid came along, plus other obstacles, and the project was put on hold. The church has now partnered with Genesee Valley Regional Community Cares, a newly incorporated not-for-profit dedicated to the creation of comfort care facilities.
Frank Strock, a local who had married Diane Howe in Byron, experienced his own hospice type situation after his wife was diagnosed with ovarian cancer in 2019. Home care and Hospice was taking care of her at the family homestead, and after she died in May, a counselor remarked that the property would make a great comfort care home in his wife’s name.
“And I said, ‘you know, my father-in-law built this home in the 50s. We have 15 acres. I know Kathy Panapento, she's a wonderful person, and she could guide us in the right direction. I'd love to do that,” Strock said. “Well, as it turned out, in the interim, I met an elder from the Stone Church and he said they had been working on this program since 2019, and would I like to get on board with Mike and a fellow named Keven Kent who's an elder at Stone Church? I said sure.”
A professional organizer versed in working with unions in New York City, Strock suggested that they file for a not-for-profit and begin to raise money. The 200-year-old church will not only have a mission, he said, but a legacy to revitalize what’s left for the 14 remaining members.
He is grateful that Stuart, who was a minister at Stone Church, donated his salary to the nonprofit to get this initiative going, and that has meant an $18,000 boost to the coffers.
“He felt so much behind this comfort care program. He had a history of over 10 years working with home hospice out of the Buffalo area, and then he went over and did an interim position at Stone Church, and he said, ‘I’m going to donate my salary to the future of a comfort care home in Stone Church.’ So you can imagine, when I heard these things, I said, you know, something's happening here, and I just have to help them,” Strock said. “And with the church as small as 14 members, even though it's been there for 200 years, and knowing that the people may not have the energy to do this work, we feel that as we grow as an organization, Genesee Valley Regional Comfort Cares, that we will find the resources.”
Father Scott, based out of Our Lady of Mercy in Le Roy, and who works with some nine or so different Catholic churches, has shared the effort with his congregations, and “there’s so many members that have a history of working in healthcare that they would be wanting to be on board as volunteers,” Strock said, and it seems to be good timing with Crossroads founder Kathy Panepento retiring.
“It’s almost like, with all her life that she’s given to Crossroads, it’s now time for others to help pick up the ball and try something new,” he said.
The objective is to establish a two-resident home “filled with love and support,” and to provide “individualized care for those who have been medically determined to be in the last three months of their life,” similar to Crossroads House in Batavia.
Staff would include doctors, registered and licensed practical nurses, aides and specially trained volunteers. Preference would be given to those residing in the Genesee Valley and admission granted regardless of religion, race, age, sex, or other distinctions.
Referrals can come from physicians, social workers, discharge planners, healthcare agencies, clergy, individuals or other sources that provide care for individuals approaching the end of life.
Organizers are hoping that members from the community and at least some of the 55 Presbytery churches attend this first meeting and become an active participant. They’re looking for people to join the association board and/or volunteer for one of the many facets of the comfort care home needs by providing ideas, healthcare, design, construction, clerical, tech support, bookkeeping or well-intentioned prayer.
“In particular, we ask for your prayers that a donor will come forward with a donation of a lot upon which we can build our facility,” Strock said. “We welcome all. Your heart and soul will be the foundation for this cornerstone of service.”
Tax-deductible donations may be made to GVRCC Inc., 6613 North Bergen Road, Byron, NY, 14422.
