Faith In Action® National Program Report

Sitka is a coastal island city accessible only by boat or air. A number of the 8,800 residents of this isolated community do not have family members or close friends nearby to rely on in times of need.

Two Sitka residents, Auriella Hughes, R.N., and Jean Frank, recognized the need for a volunteer visiting/respite service and hospice-like service as the result of their efforts to care for a local woman who was dying.

A woman asked Frank to organize volunteers to help her in her home so she could spend her last days there instead of a hospital. Hughes was working for the local home health agency and providing regular home visits to the woman.

From this experience, which wound up being very positive for all involved, Hughes and Frank clearly saw the value of home-based end-of-life care. They decided that assistance of this nature should be available to all community members who find themselves in need of volunteer caregiving and support. Sitka, however, had no formal hospice services.

Hughes and Frank held communitywide meetings and with widespread community support formed an organization, Sitka's Faith in Action, to provide volunteer caregiving and respite support. They then applied for funding from Faith in Action. RWJF provide a $35,000 grant in Phase 3, 2002 to 2004 (ID# 045663).

Community Worries About Proselytizing
The project soon found that the name Faith in Action created perceptions among community members that sometimes made it hard to carry out the project objectives.

Some people who might have benefited from the project services were fearful that the volunteers would proselytize while providing help. The project director and board of directors had to spend a lot of time and energy educating the community on what the project did not do—for example, conduct religious activities—rather than what it did do.

In addition, local government officials said that they could not provide any funding because they perceived that the project conflicted with the separation of church and state.

Despite some difficulties with the name of the project, the director reported several accomplishments during its grant.

• Staff and supporters recruited 77 volunteers, including board members. Some 75 percent came from congregations while 25 percent came from the general community.
• Some 58 Sitka residents received assistance from the volunteers. Services provided included shopping, respite care, home visiting, light housekeeping, meal preparation and end-of-life support.

After RWJF funding ended, the organization changed its name to Brave Heart Volunteers, which leaders felt described its work without the baggage of faith-based language.

A Patient's Story
The story of a 49-year old Sitka resident with Huntington's disease illustrates the kind of help that Sitka's Faith in Action has provided. This account is based on information provided by Auriella Hughes, R.N., the organization's program director.

In September 2003, the staff learned of a man who needed help, but clearly not just any volunteer would do. He had Huntington's disease, a genetic disorder of the nervous system, characterized by involuntary movements and progressive mental changes.

A fisherman by trade, he lived on another small island near Sitka in a house he built himself. He was fiercely independent, had a compelling but changeable personality and was not always easy to be around. Even though he could no longer take care of himself, he was determined to live on the island until he died.

"When he got the disease, he did it his own way," Hughes said. "He ate what he wanted, drank what he wanted. He was a smoker and he smoked in bed. His cigarette ashes went everywhere, and at times holes were burned in the bedding. There were numerous safety issues that became of major concern." His illness and demands were too intense for his wife. She moved off the island, taking their children with her to their other home in Sitka.

The Role of Volunteers
Over the years the man's big heart, charisma and intelligence had earned him many friends, and they wanted to help. For a long time, his wife and friends were doing a great job providing help, but as the disease progressed and the man's care needs increased, it was clear additional help was required.

Sitka's Faith in Action got involved at that point and assumed primary responsibility for coordinating assistance from family, friends and volunteers.

Hughes found a volunteer who was also an experienced nurse. She wasn't afraid of the man's mood swings and knew how to provide the care he needed. She was also willing make the 10 to 15-minute boat trip to the island.

Eventually, the nurse was coming out several times a week, giving him baths, fixing meals, cleaning the house and providing company. The two developed a friendship, and he depended on her.

After a few months, however, his condition worsened, and he had to be moved to the hospital in Sitka. "When he got to the hospital, caring for him was equally hard but in different ways." Hughes said. "It was very challenging for the hospital staff, as he was quite volatile at times. He was in a lot of physical and mental pain, and was doing his best to prepare for his death, which he wished would come more quickly than it did."

Sitka's Faith in Action organized volunteers to help care for him in the hospital. They spent 10 to 12 hours a day with him there until his death in June 2004. Altogether, the man received eight months of volunteer assistance through the Faith in Action project.