Angie Patti lived alone with few worries for a quarter-century after her husband died. Then she fell and hit her head at age 93.
Her daughter and son-in-law, Debra and Ron Robidoux, thought it best if she live with them in their home, outside Buffalo.
Another move followed two years ago, as they all decided it would be easier on everyone to live in a one-story ranch without stairs.
The latest family transition proved much more painful.
Patti, 97 and in failing health, needed more care than her daughter could handle as she recovered from surgery to repair a torn Achilles heel.
The Robidouxs couldn’t find 24-hour home care for the family matriarch and wanted to avoid a nursing home.
They found solace in Sloan Comfort Care Home in Erie County, New York, where Patti spent nine weeks before she died in March.
“It was a real blessing,” said Debra Robidoux, whose cousin recommended the place.
Typically found in rural communities, comfort homes enlist volunteers and paid staff to provide round-the-clock support for those in the last three months of life.
The challenge is that almost all these homelike settings don’t receive government reimbursement for their care, creating a need to find other ways to cover related costs while serving within rigorous state regulations for providing such care.
“The vast majority of Americans prefer to not have to die in a hospital or facility, so this is an alternative model, and it really speaks to the best traditions of hospice,” said Dr. Christopher Kerr, CEO and chief medical officer with Hospice & Palliative Care Buffalo, which handles medical oversight for the facility.
“It’s a wonderful model,” Kerr said, “but its scope, its scale, is wrong, relative to the problem.”
The home, which opened in 2021, has only two beds for the services it renders.
Active and retired nurses and palliative care leaders, who make up its leadership, worked five years to prepare for its opening and nearby St. Andrew’s Catholic Church landed a $300,000 grant to renovate the shuttered church convent for the project.
The home features a pair of bedrooms for “guests” with terminal illnesses, as well as a kitchen and gathering room on the first floor. Upper floors include a chapel and rooms for family members who wish to stay or rest.
Shifting sets of family photos and heirlooms top the dressers and tables in the first-floor bedrooms. Quilts adorn the walls behind the headboards of the beds.
Visitors set the tone here. Children and grandchildren often crawl into bed with the guests. Other informalities include “living wakes,” pizza nights and song.
“We have our fair share of wine and beer,” said Mary “Molly” Shea, a retired nurse who became volunteer executive director.
Grace and need
The name of the nonprofit enterprise pays homage to the community that fuels its work.
“It’s not uncommon to walk up the steps and there’s Tide and some paper towels and a $50 bill hidden in a Kleenex box,” Shea said.
Church maintenance workers keep the comfort care home in good stead, said the Rev. James C. O’Connor, who helps tend to the spiritual needs of 500 St. Andrew’s parishioners. The parish supports the home, five weekly AA meetings, a village thrift shop, and an outdoor food cupboard where people can donate and find food at all hours.
“A church doesn’t belong just to the people who are the members of the church,” O’Connor said. “A very important part of the mission, too, is to be concerned about the sick and the poor and the dying. It’s wonderful we can do that right on our property.”
Comfort care homes usually operate on $400,000 or more annually, Shea said. The Sloan home made do on $283,000 last year.
Growing challenges
Palliative care gained steam across the country during the last two decades as those in the health fields longed to bring more dignity to death.
The practice takes a holistic approach for those whose health challenges extend beyond the boundaries of modern medical remediation.
Sandra Lauer leads the hospital palliative care program, which includes Grimm, two social workers, a physician assistant, nurse practitioner, behavioral health peer support specialist and the hospital pastoral team. Grimm and Lauer also volunteer with Sloan Comfort Care Home.
“One of the root causes of why we even paid attention to this is the significant gap in the system that exists right now,” Grimm said.
Hospitals cannot release patients without a safe discharge plan. For people expected to live less than four months, that means a place that provides round-the-clock care.
People at this stage, and their loved ones, typically want that time spent at home, but that can get costly and unpredictable, at least in the short term, and especially for those without good health insurance, financial means or loved ones able to shoulder the load.
“A patient backlog exists at all local hospitals,” Shea said, “I have five referrals a day.”
Hospice Buffalo provides in-home outpatient care, but not 24-hour coverage.
“Going home with hospice really requires significant support structure and 24/7 care,” Grimm said. “If you think about it, at 3 a.m., if someone needs to get to the commode, that’s a family member or someone a family member can hire.”
That means finding dependable home care to cover the gaps or nursing home care – both beset by worker shortages in the wake of the COVID-19 pandemic.
“We’re missing the real story in our community, which is that our nursing homes are at a crisis,” Kerr said. “The overarching theme … is we’ve gone from good, faith-based homes to a lot of out-of-town, privately owned homes, the large chains and whatever. Then you add the nursing shortage and their reliance on agency nurses.”
“We’re missing the real story in our community, which is that our nursing homes are at a crisis,” says Christopher Kerr, above, CEO and chief medical officer with Hospice & Palliative Care Buffalo.
“People want to say places like ours are for people who are financially on the edge,” Shea said. “I’ve had people who live like kings and queens in these beds because they couldn’t find anybody to hire in the community.”
The care crisis worsens as baby boomers continue to age into retirement, generally living longer than their parents and grandparents and putting more strain on families and the health care system.
Decades ago, hospitals housed patients in their last months, and sometimes years, of life. Some still do, Kerr said, but in far fewer numbers and only because staff shortages in nursing homes and home care often require it.
“Last week, we transferred two people out of facilities because of the absence of nurses,” the Hospice Buffalo CEO said.
Hospice Buffalo works with Beechwood Homes in Getzville and a small group of other nursing homes that have set aside palliative care beds to help handle patients that fall between gaps that Sloan Comfort Care House also helps fill, Kerr said, but the need is far greater than the supply.
Part of the solution
More than 8,200 hospice and palliative care centers exist across the U.S.
About 90 comfort care homes – also known as homes for the dying and social model hospice homes – exist or are in development across the country with support from the Omega Home Network, which helps similar nonprofits establish and maintain standards and values.
Sloan Comfort Care Home and a dozen others in the network exist across New York State and four are in development. All are upstate. All but one don’t accept Medicare, which helps cover the cost of hospice care, or Medicaid, which often helps cover nursing home care. New York, unlike some other states, requires paid medical staff to handle almost all hands-on care, Kerr said.
“We have an army of 1,000 volunteers and they can’t do hands-on care, either,” he said, “so if you’re running a comfort home, you need to have a nurse on staff, which is pricey, and need to partner with somebody like us who can provide the medical component.”
The Sloan touch
Eleven staff members handle medical care at Sloan Comfort Care Home. It doesn’t charge for its services, but encourages donations.
It has so far served about 30 people and their loved ones. That has included a man with schizophrenia, a woman in her 50s who worked in the court system and died of cancer, and a retired doctor so tall he couldn’t end his days comfortably in a traditional bed.
Others included Nicole Elliott, of Hamburg, a clinical nutritionist and Reiki master who owned her own business and was diagnosed with brain cancer in 2019.
Elliott had two adult sons: Ben, who moved to Los Angeles 15 years ago, and Alex, 33, who lives outside Denver.
The sons were visiting in early February when Elliott’s health took a turn for the worse. A friend recommended Sloan Comfort Care Home but its two beds were occupied, so they toured a Southtowns nursing home. It felt big and understaffed. Workers were genuine in assurances that their mother would be in good hands, but some said they labored through 18-hour shifts and felt overwhelmed, Alex Elliott said.
The sons spent hundreds of dollars on travel to Hamburg and expenses before the visit, and lost several weeks of pay by the time they were told they would need $22,000 upfront for three weeks of care, and could file for reimbursement with their mother’s health insurance company.
They were brainstorming ways to cobble together $6,250 for the first week when Shea called to tell them a room was available in Sloan.
Ben Elliott, left, and his brother, Alex, flank their mother, Nicole, during her stay at Sloan Comfort Care Home. She died March 11. “The Sloan House made so much more sense to me,” Ben Elliott said, “and it’s given me peace after the fact.” (Maria Suchyna/Sloan Comfort Care Home)
Nicole Elliott felt at peace during the next four weeks, said her sons, who brought food for their mom, themselves and others at the comfort home, and cooked it in the kitchen. All three donated what they could toward operation of the facility.
“Everybody there was beyond helpful,” Alex Elliott said, “and we were able to actually spend some quality time with our mom.”
Nicole Elliott spent the last day of her life covered by her favorite blanket, her sons at her bedside sharing recollections as their mom slept. She died the following morning.
“I was kind of dumbfounded at the nursing home,” Ben Elliott said. “Like, wow, this is kind of how it works. The Sloan House made so much more sense to me, and it’s given me peace after the fact.”
Debra Robidoux felt likewise. Patti had been active in a women’s craft group and church. She vacationed often during her last decades with two sisters and a brother-in-law. She slowed down some after doctors removed a benign brain tumor when she was 80. Home health care aides stopped at the house three times a week, but she was still well enough to dine out often with her daughter when Robidoux’s husband was at work.
“We were best friends,” her daughter said.
Dementia and other ailments became too much for Patti to bear earlier this year as her daughter needed to keep off her feet after Achilles surgery.
She brightened when Shea called Jan. 16 and said, “you could be daughter and mother again instead of caregiver and patient.”
So did Patti, who celebrated her 97th birthday in early February with a party that included helium balloons and wine. At one point, she put her hands on Shea’s cheeks and told her, “I’m having such a good time.”
She died on a sunny Sunday morning.
Her daughter has given money, food, and supplies to Sloan Comfort Care House. But she said she can never repay the kindnesses that came from those who helped care for her mother in her last several weeks – and came to her calling hours and memorial service.
“They stayed with me. They hugged me every day. They cried with me, too,” Robidoux said. “They’ve been such a blessing to me that I want to be a blessing for them.”