CAROL SINOPOLI MAKES PAINFUL DECISIONS every day for her husband of 47 years.
Another member of the McGregor support group, Sinopoli says her husband’s dementia came “like a brick on the head” five years ago. Shortly after her husband retired, she called him from work one day, and he told her the air conditioner repairman would arrive on Saturday. He also told her a strange woman was sleeping in their bed and wearing a lot of makeup. “I said, ‘You see this?’” Sinopoli remembers. “He said, ‘Yeah, I see her.’
“And that was it.”
Her husband was diagnosed with Lewy body dementia, a form of dementia that includes hallucinations and physical decline. At first, he was able to stay at home mostly alone, but eventually Sinopoli took him to an adult day care program while she went to work. (Sinopoli is the assistant director of nurses at a residential facility that includes a memory care unit.)
Eventually, she hired a caregiver during the day. She works four days a week and also cares for her husband at home. His condition has severely deteriorated, and he’s now bedbound and nonverbal. She wakes up to turn him over every few hours during the night. He’s in the end stages of the disease.
But Sinopoli says his eyes still track her across the room, and when she bends down over her husband’s bed: “He’ll still give me a kiss.” As he lost his ability to speak, some of the last words he said to his wife as she cared for him were, “Thank you, thank you.”
The couple met when Sinopoli was 17 years old, and she describes him as “the love of my life.” They moved to Florida 25 years ago when her husband accepted a job teaching math at a local school. They raised five children. “He was an athlete, he was a runner, he was brilliant, he was witty—he was funny, funny, funny,” she says.
The slow loss has been painful. “I just miss him,” she says. “It’s a lonely journey.”
She’s found comfort in her church and the support group Mitchell started. She had once tried a secular support group in a nearby town, but didn’t feel much connection. She appreciates the Christian-based support: “At least in church, we have that commonality, we have the same faith. Something unites us besides the disease that we’re sharing.”
Still, it’s been hard for her to ask for outside help. She’s protective of her husband’s dignity and reluctant to bring in people who didn’t know him before his decline. She did recently speak with an elder at the church about coming to visit, and she’s found someone to stay with her husband while she attends church on Sunday.
When people ask how they can pray for her, she says she needs wisdom: “Because every time you think you’ve got it under control, the ground shifts.” Now she plans less and prays more that she’ll have wisdom for each day and contentment for the moment she’s in: “And that’s a good place to be.”
OFFERING SUPPORT LOOKS DIFFERENT for different families.
For churches with members still able to attend services in earlier stages of dementia, some practical considerations could help: For example, a family restroom can assist a wife who needs to help her husband to the washroom.
Offering teaching on dementia in churches and seminaries can help members learn how to assist and empathize with others. Support groups can encourage caregivers inside and outside the church and help them connect with other local resources as logistical and financial challenges mount. (Charles Moore, pastor of First Baptist Paducah, says his Kentucky church moved its support group to a local hospital to reach more members of the community.)
When caring for a loved one at home, some caregivers need a friend to stay at the house while they run errands or attend church. Others are reluctant to leave their loved ones with people who don’t know them well, but they could use a hot meal. Offering specific forms of assistance can prevent caregivers from becoming overwhelmed with managing both their loved one and those who want to help their family.
Benjamin Mast says that in his research, many families said they needed the presence of other people. Just showing up and offering companionship can do as much as highly organized programs or plans.
And caregivers aren’t the only ones who need company. Dementia patients need visits too. Mast says research into emotional memory suggests even if a dementia patient doesn’t remember your visit later, he can still remember how you made him feel.
“It’s kind of like being in a dry and hot desert, and somebody comes up and offers you a cool cup of water,” Mast says. “When you had that in the moment, you would be incredibly grateful for it.”
He says God gives all Christians simple practices to help them remember Him, and those same means can help dementia patients remember and enjoy God as well: Familiar hymns, Scripture verses, prayer, and even the physical act of taking communion can all be routes into older memories that connect people to their Christian faith. Ministries in nursing homes can foster a vital connection between an aging believer and the Church, and can also extend the gospel to those who need to hear it.
Mast says that perhaps the most comforting message for ailing Christians who fear they will forget God is that God promises He won’t forget them: “Even a progressive neurological condition like Alzheimer’s disease cannot separate us from the love of God that is in Christ Jesus.”
Mitchell says though her mother is in advanced dementia, she can still sing a hymn. She recently read a Bible passage about heaven to her mother, and asked, “Mom, what are those gates made of?”
“They’re pearly,” she replied.
AS THE NUMBER OF DEMENTIA CASES grows, so will the population of patients with fewer options for caregiving.
A 2016 study by the National Academy of Sciences noted the caregiving challenges ahead, as “families have fewer children, older adults are more likely to have never married or be divorced, and adult children often live far away from their parents.”
It’s another opportunity for churches to connect with aging people (with or without dementia) who need advocates, basic forms of help, or simple companionship.
John Dunlop, a geriatrics physician and author of Finding Grace in the Face of Dementia, says it’s also an opportunity for the church to defend the dignity and inherent worth of every person made in the image of God, regardless of physical or mental capabilities.
Dunlop says that message will be even more critical as debates about assisted suicide continue in several states. (In the Netherlands, where euthanasia has been legal for decades, the number of patients seeking euthanasia because of early-onset dementia has grown.)
Back in Tennessee, Patrick Mead is thankful for how his parents’ local church helped as his father battled dementia. Church leaders lived close by and would show up in the middle of the night if his mother needed help.
Dementia is complicated and difficult, but Mead says in some ways the approach to caregiving is simple. “Just do your job, and create the kind of world you want waiting for you,” he says. “Treat them the way you want to be treated if it’s your turn.”