BY: NANCY J. LIGHT, RN, M.P.S. AND BETH LYNN HOEY, CFRE
'I Can't Believe I Could Be Loved This Much'
The obituary notice began, "Rose, 74, passed away peacefully at home, at Francis House." Therein lies the essence of our ministry: to become a home, to become family to those in their final days.
As you drive down Michaels Avenue on the north side of Syracuse, N.Y., it looks like any other quiet, residential street. The third house on the left has a quaint covered porch with a white railing. It is surrounded by a perfectly groomed yard with blooming shrubs and seasonal flowers. A small sign that reads "Francis House" marks the driveway. Park in the rear of the home, and you are greeted with a view of a beautiful statue of St. Francis and yet another covered porch with comfortable furniture. Enter, and you immediately smell the wonderful aromas of home-cooked food and freshly baked desserts. It feels and looks like home. Indeed, Francis House has been the final earthly home for over 1,700 people since opening its doors in 1991.
January 28, 2011, marks the 20th anniversary of the opening of Francis House. A sponsored ministry of the Sisters of St. Francis of the Neumann Communities, the Francis House mission is to provide a home and family to persons with terminal illnesses so they can die with dignity and experience the unconditional love of God. This is a private home, not a licensed hospice or nursing home, and it receives no state or federal reimbursements. Instead, it relies primarily on fundraising efforts and the work of hundreds of volunteers.
Francis House was the dream of Sr. Kathleen Osbelt, OSF. Serving as a hospital chaplain in the 1980s, she met a young woman with HIV/AIDS. At that time, HIV-positive persons had a grim prognosis, and there were few, if any, places outside of an acute care setting for those individuals to spend their final days. Indeed, this young woman spent her last Christmas, Easter and birthday in a hospital room.
Sr. Kathleen knew there were many others who, for lack of family or resources, did not have the choice to die at home. She approached the leadership of the Sisters of St. Francis, who provided a circa 1900, two-family house. Community volunteers refurbished the house and made it ready to accept its first residents. Sr. Kathleen continues to work part-time at Francis House in the development office. She always makes it a point to connect with current residents and family members of past residents.
The first resident at Francis House came from the hospital. Prior to that, he was homeless and living on the street. He had long ago lost his job and family, and he was completely alone in the world. One afternoon Sr. Kathleen stopped by "Tom's" room. Tom was a very stoic, guarded person, not inclined to share his feelings. But this day, as Sister approached his bed, she could see tears falling from his eyes. Her first thought was that he was in pain. Tom denied pain and continued to cry. When asked if he wanted to explain why he was crying, Tom nodded his head yes, and simply said, "I can't believe that I could be loved this much."
Unconditional love — that is the basis of all that we do at Francis House. Everyone who volunteers, provides care or supports our ministry shows that love every day to our residents. The core values of our home — compassion, unconditional acceptance, respect and dignity — are lived out in ways both seen and unseen each day.
In 1991, we had six rooms for residents. In 1998, because of increasing need for service, we built a single-story addition onto our original structure. That increased the number of bedrooms to eight and gave us a spacious kitchen and great room as well as a chapel. In 2003, we constructed a second eight-bedroom home adjacent to the first and connected the two buildings at the first floor and basement levels for ease of access. Now, with 16 bedrooms, our capacity is complete.
A recent change to our great room is the "children's corner." Since we often have small children visiting, we wanted to provide a special place where they could read, color and draw. A "right-sized" table and chairs, wonderful children's books and packets of crayons, paper for making a card and chocolate candy are available for our young people as they spend time with precious loved ones.
Each private bedroom has large windows that let in lovely views of the outdoors and provide light. A telephone, television and WiFi service are available. The residential-style beds are fully electric, and each room also has an automatic recliner chair. Residents bring in pictures and family mementos to decorate the room and make it their own. As you visit a resident, those family pictures — parents, children, grandchildren and great-grandchildren — all taken at times of happiness and celebration surround you. Then, too, there are the pets that often visit because they are an important part of a family and add a special feeling of home for the resident. We also have regular visits from therapy dogs.
Francis House employs 15 full- and part-time caregivers, and each caregiver is, at minimum, trained as a home health aide. The Francis House caregivers serve as the extended family for each resident, providing care 24 hours per day, 7 days a week. A full-time resident care coordinator supervises the residents' plans of care and the Francis House care staff.
However the heart of our home is the group of over 550 volunteers who give their time in four-hour shifts from 8 a.m. until 10 p.m. every day. Volunteers prepare and serve meals, clean, answer the telephone, maintain our grounds and provide maintenance service. Vigil volunteers provide a presence to residents who are actively dying but have no family to be present for them.
Francis House accepts referrals for admission from hospitals, home care agencies, physicians and family. The individual must have a terminal illness diagnosis with signs of illness progression and a prognosis of six months or less, as determined by a physician. Each referred person receives a personal visit, which is our opportunity to review the needs of the potential resident and determine if the care they require is care we can safely provide in our setting. Also, the visit gives the resident and family an opportunity to meet someone connected with our home, ask questions and see photographs of rooms and grounds.
When a bedroom becomes available, we get up-to-date information on the situation of each of our applicants and we offer the room to the person most in need of our care. We may have up to 25 active referrals at any given time, and, of that number, approximately 10 people are ready for admission to our home. Our average length of stay in 2009 was 20 days.
Francis House is a private home that operates under the auspices of the Onondaga County Department of Social Services with the designation of "Community Care Shelter for the Terminally Ill." We are the only home of our kind in New York State. Our designation as a shelter allowed us to meet housing codes in the city of Syracuse and build our structures.
Each person who comes to Francis House must be enrolled with a licensed hospice or a certified home health care agency. Each resident has his or her own physician as well as a plan of care from the home care agency or hospice, and the Francis House caregivers follow that plan. An easy way to understand the relationship is to think of the hospice or home care agency as a program of services brought to a client and their family in their home. Francis House is that home and family. We notify the agency when there are resident problems that need to be addressed medically, and the agency responds to our residents according to their own policies and procedures.
Francis House is not a licensed facility. It is a private home and as such has never received direct third-party reimbursement. In recent years, however, the popularity of long-term care insurance policies has caused us to examine our financial situation in light of those benefits. Francis House assists individual policyholders by supplying appropriate documentation of care needs and cost so that policy holders may apply for benefits. If the application for benefits is successful, it is our hope that the policy holder or designee would use those benefits to contribute to the cost of Francis House care, which currently is $6,700 per month or approximately $220 per day. The cost is all-inclusive.
All resident financial information is private, and no one is ever denied admission due to lack of funds. The offer of a bedroom is made prior to financial discussions. At the time of admission, a member of our staff works with resident families on finances, as we ask residents to offset the cost of care to the level they are able. We use a sliding scale as needed.
Fundraising is a large part of our activities. We mail our annual appeal letter, as well as quarterly newsletters, to more than 22,000 individuals. Our very active adult auxiliary holds two fundraisers each year, and we have found a source of constant revenue in sales of custom-made jewelry that the auxiliary purchases and re-sells at a profit. The youth auxiliary, now six years old, is composed of high school juniors and seniors recommended for their leadership ability. They hold paper drives and dress-down days to collect paper towels and other paper products used in our home.
Our signature event every year, "There's No Place like Home," raises nearly one-third of our annual $1.2 million operating budget. Fourteen years ago, 24 people staffed this event attended by 200 guests. Last year, with the help of 250 volunteers, we welcomed more than 2,200 guests.
Although we have a development staff, we find the real key to our fundraising success is our resident families' and volunteers' own experience of Francis House and the role of our two auxiliary groups in introducing Francis House to friends and peers as part of our commitment to community education on end-of-life care. These individuals believe in and actively support our ministry. Through word of mouth, they share the joy and the satisfaction they feel as members of the Francis House family. They are ambassadors of goodwill, spreading the work of our home to all they meet.
The Francis House family is witness to miracles every day. Hearts have been healed, families reconciled and chaotic lives imbued with peace. In a recent letter, a best friend of one of our residents wrote, "We talked constantly [about] how she finally found peace at Francis House ... You have no idea how much that means to me and her family. She loved her beautiful room and the patio with white tables and chairs and the beautiful garden she looked out on. It was as if you had created that room just for her ... Thank you from the bottom of my heart for giving her the opportunity to believe in herself, to be at peace, to die with dignity ..."
One of Sr. Kathleen's favorite passages of Scripture is Ephesians 3:20, 21, "Glory to Him whose power at work in us can do infinitely more than we can ask or imagine." God, working through the many volunteers, staff and benefactors of our home, has created a place of caring, kindness and unconditional love. That is the story of Francis House.
NANCY J. LIGHT is executive director and BETH LYNN HOEY is director of development at Francis House, Syracuse, N.Y.