BATAVIA — The Crossroads House, which is celebrating its 25th anniversary providing end-of-life comfort home care, came along when there was no similar facility in Genesee County.
In the mid-’90s, when Crossroads was started, not a lot of people knew of comfort care homes as an option for this type of care, said Betty James, a retired nurse who worked at Crossroads for years and remembers Crossroads founder Kathy Panepento starting the home in Batavia. The main options, other thank a person living with a relative, were nursing homes or hospitals.
“We really had to educate the general public on what they do. Wyoming County, we have four comfort homes. Word is spreading,” James said.
“The first time I heard about a comfort home was when Kathy told me that was something she wanted to look into. It was hard selling it at first. We were talking to people about it,” James said. “As we grew in staff, the biggest support came from the churches and they still do (support Crossroads). A lot of our volunteers came from churches.”
In 1996, Panepento said, there were probably six such homes in the Rochester area, including one called the Theresa House in Geneseo.
In an account she wrote about the start of Crossroads House, Panepento said that even while a hospice nurse, she had to send people who had only a few months to live to a nursing home because of a lack of a system that could provide 24-hour care.
“The hospital could not care for them because death was not imminent — meaning, not expected within two weeks. Two often, the dying person lived alone, with their spouse deceased and their grown children living out of town,” she wrote. “Another scenario that often played out was where the dying individual was married, but his or her spouse was limited physically and/or emotionally, and was unable to care for a loved one on a 24-hour basis.”
When Crossroads began, the board had maybe 10 to 12 members, Panepento told The Daily News.
“When I was getting information, I visited the other comfort care homes. The concept started in Rochester,” she said. “Mount Carmel House was the first house. One was in Geneseo, called Teresa House, but all the rest were in Rochester. They (Mount Carmel House) paved the way.”
In visiting other comfort care homes, Panepento remembered, “Some of the things, I didn’t care for, and some of the things, I liked. I just sort of took a combination of info we received.”
The Crossroads House has beds for two residents at a time. According to New York state, she said, any place taking care of more than two people would be regulated by the state.
Crossroads helped four comfort care homes get started, Panepento said. One, Serenity House, is in Tennessee, one in North Java (Charlotte House) and Gateway in Attica.
“We helped answer a lot of their questions and help them with startup, especially one in Erie County,” Panepento said.
The Crossroads House, 11 Liberty St., accepted its first resident, Jean Knox of Corfu, who Panepento said was a good friend of hers, on Jan. 7, 1998.
The unique thing about Knox, Panepento said, was that she helped to train Crossroads volunteers.
As to how Crossroads got its name, Panepento said, she had been involved in hospice in Buffalo and with starting the hospice in Genesee County.
“The nurses and some of the aides, we would go out once a month to the Red Osier. It was our monthly dinner. We were all talking about, ‘What are we going to name it?’” she recalled, referring to a comfort care home in Batavia.
James, who was on the board and was a charge nurse, was there that day,
“She was sitting next to another one of our nurses. She heard Marilyn (Snell), the other nurse, say, ‘Crossroads House,’” Panepento said. “Betty looks at her, gives her a nudge and says, ‘Did you say ‘Crossroads House?” Marilyn said, I didn’t say a word.’”
Panepento said James was suggesting different names.
“I said, ‘Once I hear it, that will be it.’ Betty looked at me and said, ‘Crossroads House.” I said, ‘Oh, my goodness, that’s it,’” Panepento said. “That’s how it got its name. It was a god wink or someone whispered something in Betty’s ear.”
A FAMILY MEMBER’S PERSPECTIVE
Years before Charlotte Crawford became executive director at Crossroads or was even on the Board of Directors, her father, James Brasington, was a resident there.
“It gives the families the ability to be families and not caregivers. That way, somebody else is doing the day-to-day hands-on …” she said.
Crawford said a resident’s family can do some of the caregiving if it wants.
“We have some families who like to. We have other families who prefer to let somebody else do it and to be the loving son, daughter, wife,” she said. “Caregiving is very time-consuming and stressful, It puts you in a whole different role.”
Before her father came to Crossroads, Crawford was one of his primary caregivers at home, she said.
“I have a nursing background. For me to do it was just a natural rollover. But, I really wanted to be his daughter. I really wanted to sit next to him and talk to him and watch movies and videos of things we used to do when we were kids,” she said. “Caregiving is very time-consuming and stressful. It puts you in a whole different role.”
While he was at Crossroads, Crawford and her dad would watch home movies he filmed when she was growing up.
“When we did that, it was easier for me to sit there and say, ‘Somebody else is going to help you with this and we’re going to watch videos you took when we were kids and we’re going to talk about past Christmases and we’re going to listen to the music you like, and we’re going to talk about happy times,’” Crawford said. “It was like being home, but if we didn’t want to do it (caregiving), somebody would do it for us, which was nice.”
Crawford said her dad, who had cancer and kidney failure, was at Crossroads for less than a week before he passed away in 2011 at age 74.
“When he came here, he stopped getting dialysis, which gave him possibly five more days of life,” she said. “It was very comfortable for him. They made sure that he was pain-free and that he was relaxed and taken care of. He didn’t want for anything.”
In the beginning, Crossroads would address the physical, the social, the emotional and spiritual needs of the dying. Since then, Panepento said, it has expanded to include end-of-life doula services.
“Me and another volunteer here, we took the training through INELDA (International End-of-Life Doula Association) and I became a certified, end-of-life doula.” Panepento said Crossroads started offering doula services in 2016.
“A lot of people didn’t know what a doula was,” she said. “Also, we offer peer grief support groups for the community. It’s other people who have also experienced a loss. We’re providing the community in-services training on end-of-life issues. We would like to provide more training to the community. People at home — their loved one is dying and they want their loved one to die at home, but they don’t know how to care for their loved one. They don’t know how to reposition them or give them a bedpan, or something,” Panepento said. “We could train people on how to provide that end-of-life care.”
Tom Staebell, a seven-year volunteer at Crossroads who also took the doula training, facilitates the support sessions, she said. The sessions are held at Crossroads’ Living Legacy Center.
“I started out as a resident care volunteer. We take care of direct care with the residents — feeding, preparing meals, any of the physical care they might need in terms of toileting, bathing, all those kinds of things.”
Staebell said he volunteers about four hours a week in residential care. As an end-of-life doula, depending on where the resident is in his or her stage of dying, Staebell could be at Crossroads every day. That work is a little different than residential care, he said. It includes getting to know the family and the resident, and helping them to understand the dying process.
“I’m a firm believer, that if they have information, there’s going to be less fear. We’ll go through the different stages of dying — decrease in the amount of eating, sleeping more, withdrawing socially. What we do is we address the emotional issues, the spiritual issues. We’re also understanding what the physical needs are so we can incorporate a holistic approach with the resident and the family. If the person comes in and they’re very close to the end of death, they may not be able to communicate. We’ll have a meeting with the family.”