COLUMBIA—There shouldn’t have been any significance to Kenneth and Linda Carder saying they loved one another. In 58 years of marriage, they’d said it countless times.
Throughout a lifelong journey that included innumerable stops, trips, conferences and callings as a bishop, now retired, in the United Methodist Church and distinguished theology professor, they had gone through it all together.
However, that lifetime of togetherness was put to the test after Linda was diagnosed with frontotemporal dementia and, gradually, as memories of everyday experiences, a lifetime of marriage, family members and even simple expressions of affection were forgotten.
“Linda was not able, toward the end of her life, to noticeably respond to my loving her,” he said. “But I learned to love her without expecting anything in return.”
Nearly 6 million people each year in the United States live with dementia, according to the Alzheimer’s Association. Countless more are affected by its debilitating effects.
As an adjunct professor with Lutheran Theological Southern Seminary, Carder has sought to address some of the social and theological issues resulting from the disease in his class, Dementia Through a Pastoral Theological Lens.
“We live in a highly cognitive society,” Carder said. “In the academic world, we evaluate people, rank people, and value people according to their cognitive functioning and communication skills. It’s very easy for us then to assume that their identity and worth lie in their mental and communicative capacities. Dementia strips away our cognitive and communicative capacities. The real question then is, ‘Who am I when I forget who I am?’”
A distinguished pastor and professor throughout the South and East Coast, Carder was teaching at Duke’s Divinity School when Linda was diagnosed.
“It sent us on a journey of learning about dementia,” he said. “For me, it meant how do I live out my baptism, my ordination and my calling in the context of this journey with dementia?”
At Duke, Carder had developed a course on prison ministry and restorative justice, which included engaging inmates in discussion. With his wife’s diagnosis, and after significant research on her behalf, Carder was encouraged by his daughters to share this new knowledge with a similar approach.
Carder and his wife had moved to The Heritage at the Lowman Retirement Community in Columbia, South Carolina, to be closer to their children.
“I was engaged with two Lutheran institutions,” Carder said. “One, where I was teaching part time, and the other a continuing care community with a memory care facility. It seemed appropriate that we bring the resources of these two institutions together in this class.”
The class meets on Thursdays with the first half being devoted discussion and poring over reading assignments. Students must present their own insights from their reading and reflection and they provide at least one question for the class to consider. Then, they spend the second half of the class relating to the residents and staff of the memory care unit, leading singing and devotions and interacting one-on-one with residents.
“By teaching us to be still and be in the moment, dementia patients gift us with the joy of being with one another and with God,” said LTSS alumnus the Rev. Bryan Pigford of Stallsville UMC, Charleston, who took the class in 2017. “In this way, they remind the busy pastor to be present with everyone we encounter, rather than rushing from one need to the next as if working down a to-do list.”
Carder teaches the class every other fall semester with the most recent class being his third since joining the faculty of LTSS.
Linda Carder spent a year and a half in the Bethany memory care unit, where she met the first LTSS group to take the course, before going to hospice. She passed away Oct. 3, 2019, while the fall class was in session.
“I studiously tried to avoid exploiting my own situation; nevertheless, my own journey gives the class some authenticity,” Carder said. “The class is not an academic abstraction for me; it is a lived experience.
“This class offers a different lens to view human identity. We are more than our brains. We are more than a collection of mental capacities or physical capacities.”
For some students, the class is an uncomfortable experience. They’ve never had a friend or family member with dementia. For others, it takes them back to their own encounters with the disease.
“We did a lot of talking about why people with dementia are treated differently and what theology says about that,” said senior Rebekah Swygert, whose grandmother was a resident of the memory care unit at Bethany until passing away in February. “We are weak and vulnerable, and that may be us one day. But if we dwell on ourselves, then we’re focusing on the wrong things.”
Carder said his personal experience has impacted the direction of the class; however, he also takes examples from other sources to give his students a well-rounded experience.
“Two students had therapy dogs. We incorporated those dogs in the visits with Bethany residents. The presence of those animals made a significant difference for the residents, and all they did was be present,” he said. “They illustrated a major learning: the importance of just being present!”
“It isn’t what you say or do with people with dementia. It’s being with them and being present in the moment. Pastors are so conditioned to want to fix or want to do or say. Just being present with a person with dementia matters. The people may not remember what you say. They may not remember your name or that you were there, but your presence leaves a feeling that lingers.”
Carder said one of the most surprising and rewarding experiences hasn’t been learning what memories the residents have lost, but rather the ones they’ve kept. Each week, they have devotions and sing hymns with the residents. Some residents who struggle to have a conversation can still recite Bible verses and sing hymns.
“Those practices were embedded, so even when they’ve lost their cognitive functioning, those memories and cognitive abilities are still there,” Carter said.
“Our memories are not contained within the bounds of our brains. Folks remember things about me that I don’t remember. When my mother died, I lost a host of memories about my childhood that I’ve forgotten. I still receive cards and expressions of sympathy for Linda with memories that I didn’t know about and that she had long forgotten. We hold each other’s memories in community, and I think the students learn the importance of that.”