Drawing out, not writing off, people with dementia
Is it possible for someone to enjoy meaningful life when they’re dependent? Can someone be the same person they used to be even when they can’t remember?
When his dad was diagnosed with Alzheimer’s disease, Winnipeg cartoonist Lorlie Barkman read Psalm 139:14: “Thank you for making me so wonderfully complex!” (NLT), and wondered: does that still apply to someone with memory loss?
“If you’re demented,” wrote British moral philosopher Baroness Mary Helen Warnock, “you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service.”
“Such ways of thinking make perfect sense if you think your identity is something you construct and can sustain by yourself,” said University of Aberdeen professor John Swinton at Canadian Mennonite University’s 2014 JJ Thiessen lectures. “They hold less strength if you believe you reside within a story that’s not your own, and that your identity is something that is given, held and sustained by something outside yourself” – the mind of God and the community he created.
Moments the curtain pulls back
One day, Lorlie’s dad took the photo of his late wife off the wall in his room, and when the evening sun shone in the window, the family discovered a smudge from his lips on the glass. It was a demonstration to Lorlie that his dad was still “wonderfully complex.” From that point on, says Lorlie, “I made it a point to watch for those moments and make a big deal of them.”
That attentiveness paid off. As Lorlie was cutting his dad’s hair, between mumbles, his dad said,
“One of these days, it will be the last haircut you give me; then mom won’t be in heaven alone.” That was the last haircut before his dad died in 1994.
As dementia progressed, phone calls and letters didn’t make sense to his dad, so Lorlie (who began drawing cartoons for the Swift Current Sun at 19) sent monthly drawings of dad’s life. “Dad went up to the care home’s front desk, held the card up, and said, ‘This is me!’” His dad died after the third card, but the drawings grew into a book called Remember, Dad?
Drawing out memories
As pastor couple at Westwood Community (MB) Church (1990–98), Lorlie and Deanna often led worship in nursing homes. Lorlie would speak or show the Third Story videos he made when he worked for Family Life Network (1975–89). Residents would fall asleep. One visit, he decided to
He drew his father’s childhood memory of his own mother carrying a lamp into his bedroom when he was ill. “I couldn’t tell if the man across the room was watching or half asleep,” says Lorlie, “but, all of a sudden, he threw up his hands and yelled, ‘A coal oil lamp!’ That’s when the light bulb went on for me: I would draw out people’s memories.”
On subsequent care home visits, Lorlie began asking residents specific questions: What games did you play at school? Did you have a pet?
One lady said she’d had a beaver trained to live in the house. Lorlie drew her baking a pie with the beaver watching. Lorlie recalls, “She was crying, ‘My beaver! It feels like home.’”
“Do you realize what you’re doing?” the nurses asked Lorlie. “You’ve got 25 people sitting in a semicircle in a dementia ward, laughing with you, talking with you, for a whole hour. When we feed them, they won’t sit long enough to eat a bowl of soup.”
What caring gives the caregiver
“Caring for someone you love changes you,” says Deanna. “We don’t know how to parent until we have a child,” but God gives grace for sleepless nights with a crying infant or a dependent friend or parent. “There’s just as much value in that senior as that infant.”
Deanna recalls the husband of a church attender whose father experienced memory loss. He began taking his father to his old homes, familiar cemeteries. The young man went from gruff to caring.
The slowness of dementia moves caregivers closer to the pace of God, “for whom the transformation of creation is a long and time-full process,” says Swinton. “If we are open to the possibility of being a guest in the life of a person with no words, everything changes. In a world where some want to kill people with disabilities, in the church, each one is a guest, and Jesus waits for us.”
During one of Lorlie’s visits to his dad’s home in Saskatchewan, Lorlie’s dad was baking a pie, but couldn’t find the oven light switch. So the elderly farmer improvised, holding a trouble light up to the oven.
“It scared me a bit. At first glance, you could wonder if meaningful life might be over, but then: poof! He showed me a pie, perfectly done” in his own creative way.
“If a person is wonderfully complex,” says Lorlie, “you can’t write them off.”
Starting a conversation with someone with dementia
Lorlie’s challenge to churches visiting people who are elderly or have dementia is “Don’t sing and leave. Take that opportunity to connect.”
While someone with dementia may not remember what they did that morning, the present is something you are experiencing together. Ask about the objects they see around them: an item of clothing, a picture on the wall.
Then move your questions from the present to the distant past; for example, “I like your sweater. Did you ever do any knitting?” or “Did you like our singing? Were you ever in a choir as a child?” The farther you can get in the past, the better chance you have of getting a good conversation.
Resist the temptation to speak for them. Slow down and allow for silence as they collect their thoughts.
Deanna says the four things every patient she ever cared for needed were eye contact, focused attention, unconditional acceptance and physical touch. “Pat their arm and say good morning. Anybody can do that. Even if all they do is smile, you’ve accomplished something.”