Imagine your father has terminal cancer, and you've just learned he probably won't live more than a few more weeks. He is adamant about wanting to spend his remaining days in his own home, but that's not an option because he can't take care of himself.
You have three kids, a full-time job, and are out of vacation or sick time, so you can't provide around-the-clock care for him in his home -- or in yours either, for that matter.
What do you do?
You might look into one of the dozen or so comfort-care homes within the 12-county region of the Diocese of Rochester. Staff and volunteers at these two-bed facilities provide hospice care for individuals with life expectancies of three months or less, and do so at no cost for the individuals and their families. Comfort-care homes are typically located in residential structures offering two private bedrooms as well as a common kitchen and living space, and encourage residents' family members to spend as much time as they'd like with their loved ones.
"It provides the family with time to be family members, rather than caregivers. They can really just spend their time with the individual at the end of life," said Colleen Donegan, chair of the board of directors of Patrick Place, a new comfort-care home that is expected to open in the next year or so in the rectory of St. Mary of the Assumption Church in Scottsville.
A great need
Patrick Place began as a project of the Five Saints West Pastoral Planning Group, which comprises St. Mary, St. Columba-St. Patrick in Caledonia, St. Vincent DePaul in Churchville and St. Christopher in North Chili. St. Mary was no longer using its rectory, so the parishes were looking for a way to put the building to use while keeping the churches visible and active in the Scottsville community, Donegan said. After conducting several studies and meeting with health-care agencies and medical professionals, parishioners in 2008 identified a great need for a comfort-care home in their portion of Monroe County.
"The simple fact is that there is nothing in the southwestern edge of Monroe County. That makes it very difficult for families who don't want their loved one to die in a hospital," said Jacqueline Coates, vice chair of Patrick Place's board of directors and a nurse practitioner with Visiting Nurse Service Hospice and Palliative Care.
The nearest comfort-care homes, each at least 20 minutes away, are Aurora House in Ogden, Benincasa in Mendon and Teresa House in Geneseo, she said. These facilities and the others in the region rarely have openings, which makes it difficult for families whose loved ones don't have time to wait for beds to become available, Donegan added. These homes often have waiting lists, but these aren't always helpful, Coates noted.
"When patients and families need those comfort-care home settings, they need it now. We're frequently looking for beds. It's been a long-standing problem in all of the homes I've worked at," said Coates, whose work with Visiting Nurse Service takes her to many such facilities.
Visiting Nurse Service and Lifetime Care are the two agencies relied upon for hospice services by most comfort-care homes. Patients also must be referred by one of these agencies before they can be accepted at a comfort-care home, said Glenda Hastings, a registered nurse and director of Advent House, a comfort-care home in Perinton. Advent House is almost always full, Hastings said, and usually serves between 20 and 25 patients each year.
After members of the Five Saints West Planning Group identified the need for a comfort-care home in their area, they set up a board of directors and began raising money.
"The initial focus is on raising enough funds to remodel the second floor of the rectory as a comfort-care home. Our goal is to raise $175,000 to do that," Donegan said.
The board has raised more than $125,000 so far, and its members hope to start construction in 2013, she said. Board members hope the home will be able to open in late 2013, Coates added.
All about service
Patrick Place will be the latest example of a trend that began locally in 1984 when two members of the lay association of Third Order Carmelites opened Mount Carmel House in Rochester. It was the first comfort-care home in the region, and similar facilities have opened every few years since. The last comfort-care home to open was Aurora House, which accepted its first patient in 2010.
Comfort-care homes have become popular because they provide another option for patients who don't want to die in a hospital or nursing home, Donegan said. People often would prefer to die in their own homes, but are unable to do so because of the homes' layout, their medical needs or their family members' inability to care for them. Comfort-care homes often present a welcome compromise, she said.
"It's as close to home as you can possibly get without being at home. It looks like a home when you're in it. There's nothing institutional about it," Hastings added.
Families like the homes because they can eat there and sometimes even sleep there in order to spend as much time with their loved ones as possible, she said.
Patients and their families are not charged for their stays at comfort-care homes, and the agency providing hospice care -- usually either Visiting Nurse Service or Lifetime Care -- is paid through the patient's private insurance or Medicaid or Medicare hospice benefits.
"We don't ask anything about their financial background because it really doesn't make a difference. Everyone is on an equal footing when they get here," Hastings said.
The homes usually have a paid director -- sometimes a nurse -- but the rest of the work is typically carried out by volunteers, who do everything from yard work, cooking and cleaning to caring for patients, Coates said.
"Having all your volunteers to really take care of people and their families is so important when they're in the most trying time of their lives," she said.
A good deal of fundraising typically takes place before a comfort-care home is ready to open its doors, but once such a home does open it's usually sustained by donations from community members and memorial gifts, Donegan said. Churches often take an active role in sustaining these facilities, either by providing volunteers, meeting spaces or financial assistance.
Comfort-care homes' missions are quite compatible with most churches' missions because both aim to serve others in their communities, Hastings said, noting that Advent House is an outreach of Perinton Ecumenical Ministries Inc.
"It's all about service, and helping and giving," she said.
"It's serving parishioners not only in good times, but in bad times too," Coates agreed.
EDITOR'S NOTE: To learn more about Patrick Place or to make a donation, visit www.patrickplace.org.