FAYETTEVILLE - The Caring Friends ministry at St. Paul’s Episcopal Church has been a godsend for Ima Pelton, whose husband, Jim, has Alzheimer’s disease.
The ministry, started last year, offers a respite for caregivers for family members with early stage dementia or Alzheimer’s disease. The program was made possible by an Arkansas law passed in 2009 that allows churches or other groups to provide four hours of respite care for up to 12 such clients once a week without the need for licensure by the state.
Those four hours each week provide Pelton with time to run errands or visit with friends.She usually gets together with a group of other caregivers for lunch and enjoys the time to visit with others who know the struggles of caring for a loved one with Alzheimer’s.
“It’s wonderful,” Pelton said. “I get four hours.”
Pelton and her husband, both 79, have been married for almost 60 years. Jim Pelton was diagnosed with the irreversible brain disease about six years ago and Ima Pelton made the decision to care for him at home.
“It’s difficult but I’m happy to take care of him. He would do it for me,” she said.
The respite care offered at St. Paul’s, as well as help from family and friends, gives her much needed time away.
The group meets for four hours each Thursday in the parish hall. Volunteers interact with the clients or “friends,” while other volunteers prepare lunch. Stephanie Sawyer, assistant director of the ministry, said the program has eight friends and about a dozen volunteers. Although the ministry can have up to 12 clients, they need more volunteers before the group can expand, Sawyer said.
The demand is there. Sawyer said she has received calls from families interested in the program for their loved ones. She is hoping more volunteers will step forward to help.
For Sawyer, Caring Friends is an opportunity to do what she loves - take care of others. She was caregiver for her grandmother, as well as for her mother, who died of cancer.
“It’s my nature,” she said. “It’s what I do.”
Although she didn’t know much about dementia or Alzheimer’s disease when she volunteered, Sawyer knew she wanted to be a part of the ministry and started reading about the subject. She realized volunteers don’t necessarily need experience. They need to enjoy caring for others and be comfortable with not knowing all the answers, she said.
Sawyer said her experience as caregiver to family members makes her keenly aware of the need for respite care and she is especially happy to be able to help the caregivers who participate in the ministry.
“Just seeing the faces of the caregivers when they first come to us. They are pale, tired and look like they need to sleep for a week,” she said. “After a while they’ve got color in their cheeks, they are smiling again. Seeing that change makes it all worthwhile.”A SAFE SPACE
Sawyer said by providing a safe place for the friends, the caregivers are able to breathe a little easier and take some time to relax, run errands or simply spend a little time alone or with friends.
“We can’t slow down their Alzheimer’s and we’re not there to make them better. It’s to give them a break,” Sawyer said.
Catherine Lyon, a registered nurse and licensed social worker who serves as medical director of the ministry, said caregivers have said the ministry is a lifesaver.
“We are worn out in four hours and they do this 24/7,” she said.
Volunteers receive some training before joining the group and then shadow another volunteer to get a feel for what they’ll be doing.
“We need volunteers who are laid-back, relaxed,” Sawyer said.
Sawyer said some friends like one-on-one interaction but others are more social and enjoy talking with two or three volunteers so she matches them accordingly. Sawyer said she tries to have the volunteers work with the same friend each week so they will notice changes, such as if their friend isn’t eating as much as usual.
The volunteers quickly bond with their new friends and they have had to say goodbye to a few when their condition progressed past the abilities of the group. A few have passed away.
“We really get attached to our friends and it hurts when one progresses to where they can’t come back,” Sawyer said. “But at least we got to spend some time with them.”
Jane Purtle has been volunteering since the program started. Her father had dementia and she said she has a soft spot for those who have the disease. She also enjoys interacting with the clients.
“The reason I stay is the people, both the caregivers and the friends, because they are so much fun to be with,” she said.
Purtle said the ministry is beneficial for all involved.
“The ministry has been very important for the friends, the caregivers and the volunteers,” she said. “All of us are blessed by the ministry. The volunteers feel they’ve done something to help and for the friends it’s a social place. And, it’s very gratifying because this is a real opportunity for the caregivers to know their loved one is being cared for and they can relax.”
Clients who join the ministry attend the first gathering with their caregiver to get comfortable with the group, Sawyer said.
“We need to make sure it’s going to be a good fit,” she said. “Some people have had to stay two or three times. But others bring their loved one and five minutes later they are chatting with their new friends.”
Sawyer said the ministry can only accept clients in the early stages of dementia or Alzheimer’s disease who can take care of themselves to a certain extent.
“Some have wanted to bring clients who were just physically beyond what we can care for and that just breaks my heart,” she said.
WEEKLY ROUTINE
Each Thursday starts with the same routine. The group gathers in the parish hall and recites the Pledge of Allegiance before singing “America.” They then sit in chairs in a circle for some stretching and light exercise led by Sally Wimberly. With music playing, group members stretch their arms up high and sway them gently side to side. After about 20 minutes it’s time for balloon volleyball done to energetic music from the 1950s for a bit of nostalgia.
“They love that,” Sawyer said. “Some have balance issues and they stay seated and their volunteers make sure they get the ball. That’s a lot of fun.”
Sawyer spends much of her time watching over the group, making sure everyone is all right.
“I feel like a mother hen sometimes,” she said.
Before stopping for lunch, group members gather around tables to play dominoes, checkers and other games or put puzzles together. After lunch, some watch reruns of The Andy Griffith Show while others visit or return to their games.
“Fun is good medicine and laughter is the name of the game,” Lyon said. “We don’t push. They just have a great time and they are safe. You walk away feeling really good about it.”
According to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s disease and 15 million caregivers have provided more than 17 billion hours of unpaid care for their loved ones. Denyce Willis, program coordinator of the Arkansas Chapter of the Alzheimer’s Association, said respite ministry for caregivers is essential.
“It’s probably one of the most important things we see that helps them do long term care,” she said. “One of the goals is to make sure the caregiver can outlive the person with the disease, so they have to have breaks.”
Willis said the day-in and day-out tasks are difficult for caregivers who must take care of someone around the clock.
“The tasks of surviving become too hard,” she said.
Programs like those at St. Paul’s provide a much-needed break for caregivers, she said.
Sawyer said she hopes other churches will be interested in starting similar ministries. The once-a-week program simply requires committed volunteers and minimal financial support, she said. At St. Paul’s, lunch is the only expense but churches opting to have a morning program or an afternoon program wouldn’t need to provide a meal.
“We hope other churches will be interested,” she said. “I know family members would love to take them somewhere a couple of times a week.”
For Pelton, the ministry helps not only her but Jim as well.
“It is stimulating him. When we pull up he knows [where we are],” she said. “I’m so grateful for it. It seems people have been put in my life for this season to walk beside me and care.”
More information is available online at stpaulsfay.org.
Religion, Pages 12 on 07/20/2013