SEEKING A LIFT
Circle of Friends for the Dying is raising funds to install an elevator at its home for the terminally ill
KINGSTON, N.Y. » A little over one year ago, Ulster County’s Circle of Friends for the Dying was gifted a historic Victorian house in the city’s Rondout neighborhood. The organization is in the process of turning it into a home in which to care for community members at the end of their lives.
“After working towards opening a Home for the Dying since 2012, such an offering was unexpected, even rather stunning,” the group states on its website. “When Kingston resident Jim Gohlke’s life was winding down from a long bout of cancer, he spoke with (Circle of Friends) founder Elise Lark and founding board of directors member, Dr. William Gooch, of his wish to give his stately home to our organization.”
Shortly after that conversation, and unfortunately long before Gohlke expected it would happen or had finalized the transfer of ownership, he died. But Gohlke’s children wanted to honor their father’s wishes, Laurie Schwartz, Circle of Friends for the Dying (CFD) co-founder and board chair, said recently. Their only request was that the home would carry the names of both their late father and mother, Schwartz said.
So, in the midst of the COVID-19 pandemic which had halted the renovation of a Ponckhockie home the group owned and had hoped to open, the organization sold the Ponckhockie property, switched gears, and began renovations on Jim and Lisa’s Circle Home at 100 Wurts St.
With an anticipated fall 2022 opening, the organization is rushing to bring the home into compliance with federal Americans with Disabilities Act requirements. To do so, doorways must be widened and made accessible to wheelchairs and gurneys and — perhaps most challenging of all — an elevator must be installed that will allow the home’s two residents, friends, family, volunteers and a paid aide or nurse to access the second-floor bedrooms, the thirdfloor offices, a main floor living room, dining room and kitchen, and a backyard flower garden.
The finished home will also accommodate residents’ families and friends.
Said board member Ann Hutton, “A lot of people who are our age can’t just trip up and down stairs. And the residents are free to roam. This is their home. They don’t have to stay in their rooms. They can come downstairs and make a cup of tea or sit with somebody for a piece of
cake or whatever. They can use the entire house. That’s why this (elevator project) is super important.”
In addition to the $100,000 Lift Us Up GoFundMe campaign, CFD needs to raise an additional $200,000 to cover the cost of electrical, plumbing, and mini-splits for heating and air conditioning. A grant from the Novo Foundation has already covered operating costs so that the home will be able to open in 2022, Schwartz said.
They’re looking for “someone who has extra funds (and) the ability to make a real difference in his or her community by investing in us,” Schwartz said. “People need to take responsibility here in our community to support projects like this. It’s grassroots.”
Added Hutton, “This is a community-run project and it’s for the community. We’re trying to alter the way people think and talk about death and dying and how we care for each other in the process.”
Residents at the Circle Home will be under hospice care, although Schwartz and Hutton stressed that Jim and Lisa’s Circle Home will be anything but institutional.
Residents, both adults and children, may be ready for the Circle Home when they can no longer care for themselves and their families can no longer handle their care, Schwartz said. “The point is, somebody can live by themselves still, but the question is, can they shower? Can they cook for themselves? Can they food shop? Can they drive themselves to the doctor? Probably no.
That’s when they come to us,” she added.
Rather than a nursing home or hospice facility, which Schwartz said is sometimes “a viable option,” they see Circle Home as an alternative.
“And, we know there’s a better way, and this is it,” Schwartz said. At Circle Home, she added, residents will be “supported and loved by a surrogate family and volunteers in the community who are trained in how to deal with people who are dying.”
Not only will Circle Home be free of cost to any hospiceeligible person with a life expectancy of three months or less, it will offer a home-like environment. “We’re going to ask people if they’d like to make a donation and if not, not. And if so, so,” Schwartz said, explaining that some future residents may not have the ability to donate and that others will.
Compared to a hospital or hospice facility, what Circle Home will offer will be enormously different, Schwartz said. “A facility is different from a residence. A facility is usually an institutionalized setting as opposed to a home. This home would be the same as your home. If someone were dying in your home you would have hospice services. Hospice is a philosophy of care. Hospice will go to a home, a nursing home, and a hospital. They will, once we’re open, also come to our home. It’s the same thing.”
Schwartz, who cofounded hospice in Ulster County in 1979, said Hudson Valley Hospice workers will come to Circle Home and care for its residents, but that Circle Home itself will not provide nursing or medical care.
“We do not do medical care,” she said. “We do the same thing you would do. We become the surrogate family. And, if there’s a medical need, call hospice.”
Once they’re up and running, CFD also hopes to educate BOCES nursing students by inviting them to experience the home and meet its residents. Schwartz said she’s seen young nursing students who are afraid of death and who she feels would benefit from learning.
In her experience with nursing students, Schwartz said, “Many of them hadn’t even thought about death because they were young. So we want to educate them by bringing them in to meet people who are dying because people who are dying are still living. You still can live. You still can play games. You still can watch television. Cook a meal, whatever you want to do. And there’s really nothing to be afraid of except fear itself. And the fear comes from the unknown. So we want to make it known to them.”
Hutton said Circle Home can “stand as an example of a care model” and hopes the concept will grow and more homes will open locally as they have in the Rochester area, where there are currently about 20 homes for the dying.
The Circle Homes concept started in New York state in 1984, Schwartz said. There are now about 30 statewide. Jim and Lisa’s Circle Home will be the first of its kind in the Hudson Valley.
The need is there, they both said. Even months before its doors will open, Schwartz said, CFD is receiving calls from people hoping for a place for themselves or a loved one.
To get the ball rolling, in addition to raising funds for the Lift Us Up campaign, CFD is looking for volunteers to work in the home’s garden and grant writers. They also hope to find people willing to hold and plan fundraising events in the coming months, Schwartz said.
For more information about Jim and Lisa’s Circle Home, visit https://www. cfdhv.org/. Donations to the Lift Us Up campaign may be made at https://www.gofundme.com/f/3qzvxh-liftus-up.