Elizabeth is a 20 year old young woman living with Batten Disease. This rare illness affects 2 of every 100,000 children, causing mental impairment, seizures, and a progressive loss of sight, motor skills, and the ability to communicate. There’s no prevention and no cure.
Since Elizabeth’s family cares for her at home, the caregiving challenges are tremendous. This summer, Project Compassion partnered with the family’s faith community to create a caregiving Support Team called “Elizabeth’s Friends.” Almost 20 people attended Support Team orientation, enough volunteers to form two teams, one for Elizabeth and one for another family as well!
Elizabeth’s Friends have become an intentional circle of care: keeping Elizabeth company while her parents take a break, preparing and delivering meals, raking leaves, helping around the house, assisting in numerous ways. According to Elizabeth’s father, the Support Team gives them the freedom and support they need to spend precious time together and make every day count!
A letter from a Support Team Recipient
“I have been a healthy, active, independent woman all of my life. In January of this year I learned that I had a very aggressive breast cancer and needed surgery, chemotherapy and radiation which would dominate my life for the next year and a half. I found myself in totally unfamiliar territory. So much research to do, a ton of information to consider, questions to ask – with few definitive answers, and so many difficult decisions to make.
Life changed. I had little control of its course. I needed help, and I wasn’t accustomed to asking for or accepting an offer of help. I had been the one that could be counted on. My children and close friends convinced me it was their turn to help me – and they did. But the fact is they couldn’t be available all the time. They worked, had families, and most were out of state.
My next challenge was to be able to accept help from total strangers. When Project Compassion first talked with me about a Support Team, I accepted gratefully, but with guilt. It was one of the best decisions I have made. Having the Support Team has not only been a relief, but a joy.
The people on my Support Team are not only caring, but responsive, dependable, and continue to be there for me, whatever my need. They have driven me to and from many chemotherapy appointments, done my grocery shopping, and taken me to the post office. They have come just to visit, and have phoned me regularly to check in and see what I need currently. Above all, the have taught me so much about accepting generosity. These are people who do what they do just because it’s the right thing to do.
I thank my Support Team and Project Compassion, the organization that supports their valuable work. I am truly grateful.”
Wisdom Works Support Teams
Help Seniors Care for Neighbors
A Wisdom Works Support Team of senior volunteers provides support for a man with ALS and his family. In his early 60s, this man is nearly immobile. His wife works full time to support them. The team helps coordinate visits, transportation to appointments, and meals.
According to the team leader: “Without the team approach, I don’t think there would be any way we could do as much as we have been able to do. I feel I get so much more out of it than I could possibly contribute. I feel so blessed to work with such a great group.”
In 2004, Project Compassion was selected for a Wisdom Works demonstration grant from the National Council on Aging and the Metlife Foundation. One of eight sites selected from among 200 applicants nationwide, this grant helped Project Compassion develop a network of senior Support Teams composed primarily of volunteers age 60+.
In the past year, over 175 Wisdom Works volunteers have provided volunteer caregiving for over 100 individuals. These senior volunteers have given 5500 hours of volunteer service to benefit their neighbors.
Teams have been created in partnership with a range of community groups and organizations, including faith communities, retirement communities, and friendship groups.
In one retirement community, a woman with failing vision now has a Wisdom Works Support Team of senior volunteers who visit her, read to her, transport her, and help her tend to her roses.
According to one team member: “I have a whole new way to help my neighbors. I don’t have to wonder if their needs are getting met. With the team approach, it becomes clear what they need and how I can help.”
As our Wisdom Works grant concludes, we now have a whole new network of teams and resources geared for senior volunteers. One Wisdom Works team leader may have summed it up when he said:
“ The team approach really stimulated our creativity. We now see ways to meet a wide range of needs that we had never considered before. We look forward to finding more and more ways we can serve our neighbors!”
Support Teams at Carolina Meadows
When Carolina Meadows Retirement Community hosted Project Compassion’s first Support Team Leadership Training Conference in April, 2002, resident volunteers had already formed a Support Team. Carolina Meadows now has 7 Support Teams with 67 volunteers!
According to Larry Barrus, the volunteer who coordinates Support Teams at Carolina Meadows, Support Team Leadership Training made a big difference for him. “The training is helpful because it really energizes you and gives you a focus,” says Barrus.
Barrus, who spent his career starting things, has been a natural at staring Support Teams. He explains that while there have always been plenty of volunteers at Carolina Meadows, many have been concerned about over-commitment. With a Support Team approach, Barrus says, “the whole thing snaps into place. People say “I can surely give 1-2 hours a month.”
Project Compassion is grateful to Carolina Meadows for supporting the Support Team Initiative and for all they are teaching us about Support Teams in a residential setting.
Support Teams at the UNC Hospital Burn Center
Project Compassion has worked with UNC Hospital to develop a volunteer Support Teams for the Burn Center. The Burn Center Support Team provide practical, emotional, and spiritual support for patients, families, and staff dealing with burns. These Support Team volunteers complete UNC Hospital Volunteer Orientation and a brief orientation to the Burn Center.
If you would be interested in this exciting venture, call (919) 402-1844 or email firstname.lastname@example.org. We hope this will be the first of many UNC Hospital Support Teams!
Support Teams In Collaboration with AARP NC
AARP NC is collaborating with 8 NC Faith in Action programs to engage AARP members and all community members in volunteer caregiving. Project Compassion is working with AARP NC to bring a Support Team approach to these 9 pilot sites state-wide.
Locally, Project Compassion collaborates with AARP NC and A Helping Hand to offer a Support Teams at Shepherd’s House, an assisted living residence on Smith Level Road in Chapel Hill. This Support Team provides companionship, friendly visiting, emotional and spiritual support to residents. Participation is not limited to AARP members.