From tragedy, opportunity
Dementia care advocates teach churches how to offer love, grace in midst of difficult diagnosis
By Jessica Brodie
The Rev. Charlie Inabinet began showing signs of Alzheimer’s disease shortly after his retirement as a South Carolina United Methodist pastor.
It started slowly, but it got progressively worse. Memory loss. Trouble with day-to-day functioning.
“There was a time he was experiencing hallucinations,” says his wife and primary caregiver, Judi, from their Surfside Beach home. “There was a time when he thought I was his mom.”
Every day is different, and the stages don’t last forever.
“It’s such a sad process to go through because it’s such a slow process,” she says. “I miss that he can’t remember my birthday or our anniversary—the reciprocity. If I have a health issue, he can’t be there for me.”
But he’s still her husband, and she loves him.
“He tells me every day that he loves me.”
And they’re living life one day at a time.
The Inabinets are just two of the thousands of people living with Alzheimer’s and other forms of dementia in South Carolina. In this state alone, 122,699 are diagnosed with dementia, 73 percent of them with Alzheimer’s. Seventy percent of them live in our communities, and 219,000 caregivers live their lives alongside them, supporting them in all the ways they can.
It’s a lonely place to be, rife with hard work and isolation.
But into this reality exists an opportunity for the church—if only people can step up and say yes to what God is offering.
A role for the church
The South Carolina Conference of The United Methodist Church has launched a new effort called the South Carolina Cognitive Connection Ministry, and since May, organizers have been slowly making their way across the state offering workshops on how churches can offer a dementia care ministry right where they are with the people they already serve.
In August and September, they held two events—one at St. Paul UMC, Greenville, and the second at Mount Hebron UMC, West Columbia—designed to help people know more about dementia and ways the church can help. Another, at Silver Hill Memorial UMC in Spartanburg, is slated for Nov. 13.
“Our goals are to spread awareness, bring down the stigma and empower and engage people around dementia care ministry,” said the Rev. Bryan Pigford, among the leaders of the Cognitive Connection Ministry.
Pigford, along with dementia care specialist Tori Anderson of the state Department on Aging and retired UMC Bishop Ken Carder, have been bringing their message of hope and opportunity so churches can learn how they can play a role in helping the people and families affected by dementia.
Different for everyone
At the Greenville workshop, Anderson shared how dementia is a loss of memory and thinking abilities severe enough to interfere with daily life, affecting a person’s executive functioning, learning, memory, language, perceptual motor skills, social cognition and more.
But it’s not just about memory loss, she noted. Warning signs can include confusion about time or place, misplacing things, losing one’s ability to retrace steps, challenges in planning or problem solving, trouble understanding visual images and spatial relationships, decreased or poor judgment, changes in mood or personality, difficulty completing familiar tasks, new problems with words in speaking or writing, and withdrawal from work or social activities.
It’s also not confined to old age, Anderson noted, striking people as early as their thirties or forties. She started noticing spatial awareness signs in her brother years before his diagnosis, at age 56. Others don’t experience signs until their seventies.
“If you’ve met one person with dementia, you’ve met one person with dementia—it can look very different for everyone,” Anderson said. “No form of dementia is a normal part of aging.”
The early stages of dementia involve warning signs, but the person with dementia is still functional and mostly independent. But as it progresses into the middle stage—the longest—and then the late stage, much support is needed for both the person with dementia and for their caregivers.
That’s when programs such as a caregiver support or a respite care program, where a church offers hangout time and fellowship and the opportunity to do a service project, can be lifelines.
Help from the church
Also at the Greenville workshop, Bishop Carder shared how, like many people, he felt great fear when his late wife, Linda, was diagnosed with frontotemporal dementia.
For example—what if it happens to me? What kind of care will I have? Will I lose control? Will I forget my children, my spouse, myself?
But he also felt relief. Her troubling behaviors had a reason behind them; it wasn’t just that she “wasn’t paying attention.”
“Those are real and powerful feelings,” Carder said. “I felt them all.”
Linda lived 10 years after her diagnosis, and Carder was her primary caregiver, learning firsthand what so many people go through with dementia.
What he learned was that doctors and medicine couldn’t cure her symptoms, but what could help was extra support and love from the one place equipped to offer care in the name of the Lord: God’s church.
“The church can address our deepest fears and deepest needs, offering relationship, community, feelings of importance and that I have something to offer, a sense of belonging,” Carder said. “The church is uniquely positioned to teach people to care for one another and love as we are loved by God.”
Grace in the midst
Carder said often United Methodist lament being an “aging church”; indeed, the median age in the UMC is 58-60.
But he said that’s the statistic through which God is calling us—and it’s become an opportunity for love, grace and growth.
“We have an extraordinary number of people in our faith communities living with dementia,” Carder said.
Therein lies the opportunity: How do we respond in our context to lead society to be in the forefront, to teach society how to respond to dementia?
He said dementia is a form of enslavement and exile, but God’s grace is available in the midst of this, even when someone totally bedridden.
Carder said the church can offer two critical things: one, a different broader lens to view people living with dementia, not just a medical lens; and two, a community of belonging.
“Grace is at the heart of the Gospel, offering acceptance, forgiveness and the presence and power of God,” Carder said. “Dementia doesn’t destroy grace.
“We are more than a collection of symptoms.”
Next steps
Out of these workshops, the Cognitive Connection Ministry is hoping churches will be led to next steps, such as offering a caregiver support group, plugging into existing care or even creating their own respite care program. Respite care gives caregivers a much-needed break while their loved one engages in enrichment activities, fellowship and ministry projects in a safe space with trained volunteers. Any church with a space to gather and the ability to recruit volunteers is capable of hosting a respite care ministry.
To learn more about this work, email [email protected].
UMCSC to offer another dementia care workshop in November
Churches and individuals interested in a dementia care ministry have another opportunity to participate in a Dementia Care Workshop through the South Carolina Cognitive Connection Ministry.
The workshop will be a morning of conversation and learning about dementia, a topic that affects all congregations.
Retired United Methodist Bishop Ken Carder and South Carolina Department on Aging representative Tori Anderson will share essential information about how to be in ministry with those living with dementia.
The workshop will be held at Silver Hill Memorial UMC in Spartanburg Nov. 13 from 9:30 a.m. to 12 p.m.
To register: https://tinyurl.com/bdfhtwk7 or email [email protected].