"Can you imagine never hearing the words 'thank you' again?" asks Daphne Johnston, director and founder of Respite Care Ministry at First United Methodist Church, Montgomery, Alabama. She first heard the question from a speaker at a conference addressing the concerns of people living with dementia. "What kind of weight does that carry?" she continues. "You are not needed."
The Respite Care Ministry Johnston leads, serves those living with dementia, Alzheimer's, Parkinson's, or stroke, and their caregivers. Four hours a day, four days each week, people come for music and dance, exercise, Bible study, and arts and crafts. There they find meaning, purpose, hope, and community.
Meaning and purpose
Words of gratitude flow freely at the Respite Care Ministry. Program assistants are trained to use "phrases like, 'I appreciate you helping today, George. I'm really thankful that you could help me with Ed,'" Johnston says. "All through the day we're thanking them for their effort to help someone besides themselves."
Everyone attending the Respite Care Ministry is there to serve. Johnston asks doctors who recommend the program, to invite their patients to "volunteer" with the Respite Care Ministry.
"There is no differentiation between volunteers and participants," Johnston reports. "We are all in it together."
Together they serve one another and the community. They make flowerpots to send to local shut-ins, recognize retired military, and make art projects to give to group members in the hospital. "We're constantly trying to find ways to serve others," Johnston says. These types of service opportunities offer a sense of meaning and purpose.
One of the unique activities to grow from and beyond the Respite Care Ministry gatherings is the Side by Side Choir. The choir, whose participants include those living with dementia and their caregivers, rehearses 2 hours each week under the direction of a professional music director and accompanist. At the end of each 10-week session, the choir performs at churches, the fine arts center, nursing homes, and even city hall.
"They all just say they're going to choir practice," Johnston reports. "They have a job. They have a purpose. They have a group they belong to."
Finding meaning and purpose in life is important for all of us, including those living with dementia and their caregivers.
"Everything we do," Johnston says, "we're trying to set them up for success."
Volunteers play fun games that help with memory. "Our motto is, 'We want to continue to learn,'" Johnston continues. Discussion topics include listing 15 ways to help a neighbor, 15 things you think of when you think of a college football game, or 15 things to do to prepare for a storm. "We discuss topics that are buried inside of us that disease can not take away."
"The other day we had 15 things you would list for your last meal," Johnston recalls. "When you hear a guy that's not talked in a year spit out, 'Burger King Whopper,' everybody just claps and goes nuts."
The program makes a difference in people's lives, and is showing clinical results.
"We have a close relationship with the University of Alabama, Birmingham, Neurology," Johnston reports. "They have seen where people's memory scores have risen four to five points, and their improvement is tied to coming to Respite two or three days a week."
Additionally, the Respite Care Ministry provides support for the care partners—spouses and other family members. Their support group may be the biggest of its kind in the state of Alabama.
"If people can't make it to the support group, I'll send out people from the support group for dinners with a new member that might have work during the day. It's like a dementia mentor," Johnston says. "When you can just be part of a community and beat the isolation part, you can somehow stomach the rest. But if you have to do it all by yourself, you just can't do it."
Dementia can be a lonely disease. "Families get so isolated, off to an island on their own because they're embarrassed and don't know what to do," Johnston shares. "They are separated once this disease hits."
The ministry offers a place to form new friendships and feel support through a very difficult season. "Respite is its own community. It's almost like its own church."
Johnston remembers a participant expressing his gratitude for the monthly chapel services. "I don't ever get to pray for anybody, because we don't get to go to church anymore because of how I act," he lamented.
"He just had a breakdown the first time we went to the chapel," Johnston reports. "He said, 'I get to be in church again!'"
A labor of love
Johnston, a former retirement community director, finds great satisfaction in the Respite Care Ministry. "It's addicting," she reports. "God just gives you so much energy because these people are so thankful and they're so grateful. We lead with the mentality that we are all still whole and made in the image of God and no disease can take that away."
People are catching on. Johnston and her team have helped churches replicate First United Methodist Church's Respite Care Ministry in other cities in Alabama and Georgia and requests are coming in from across the United States to help others. They are willing to share their model for no cost to any community interested in beginning a program. (You can contact Daphne Johnston here.)
"It is not work," Johnston says. "It is our opportunity to let God's light shine through the concerted efforts of dedicated community volunteers."
This story was published on September 15, 2017.