Living Happily with Alzheimer’s
PHOTOS: PETER MAROVICH/THE WASHINGTON POST
“We got two kids out of India,” he said. Peggy, 59, chimed in. “Philippines.”
“Oh yeah, Philippines,” said Tom, a retired CIA officer. He grinned at his wife. “That’s Ollie talking.”
Ollie is their nickname for Alzheimer’s, the disease Tom was diagnosed with seven years ago. Ollie is a third presence in the house, one they never invited in. But since he’s here, they’re trying to have fun with him.
That approach — using a nickname, smoothly zigging after hitting a zag — puts the Misciagnas in a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness and playfulness.
It’s in stark contrast to earlier generations who saw the disease as something to hide.
A 2012 study found it surpassed cancer as the disease people fear most. It’s been stuck in what Bill Thomas, a geriatrician who is working to change attitudes about old age, calls “the tragedy narrative.”
“The main framework is … that it’s a terrible, destructive ride all the way down and then you die,” he said.
Family members often try to nudge a loved one to remember things, but this can turn their days into frustrating battles.
Thomas and others are promoting a more adaptive approach. It involves a lot of flexibility and willingness to expand one’s ideas of how things are supposed to be — even, crazy though it might sound, to see Alzheimer’s as a kind of gift.
Mary Fridley has written about caring for her mother, who had Alzheimer’s and died a year ago.
“I truly believe it is an opportunity, if people so choose, to be improvisational, to be silly, to play, to free ourselves from the constraints of truth and knowing and assumptions,” she said.
A 2016 pilot study in a Canadian nursing home found that dementia patients’ symptoms declined significantly and their quality-of-life scores improved significantly after 12 weeks of visits by “elder-clowns” who engaged with them using humour, empathy and improvisation.
In Seattle, a collective movement known as Momentia facilitates social gatherings at coffee shops, museum tours, zoo walks and even gibberish conversations for people with dementia and their caregivers.
That is familiar to Fridley. “With my mom, she was babbling and the words were nonsensical,” she said.
Rather than keeping a fixed idea of what language is, Fridley stopped worrying about it.
“Sometimes, we created a poem together. She would say something and I would say something that, rhymed and then she would say something that rhymed.”
Jennifer Carson, director of the newly launched Dementia Engagement, Education and Research program at the University of Nevada at Reno, encourages this kind of approach.
“Alzheimer’s can be a liberating event, an opportunity to fly,” she said. “This is in no way to dismiss the pain and suffering that comes from dementia, but to understand that a lot of that pain and suffering comes from the response.”
Carson believes much suffering comes from the social response after the diagnosis, what she describes as being treated as if you’re no longer there.
That was the experience of Brian LeBlanc of Pensacola, Fla., who was diagnosed with Alzheimer’s four years ago. People would walk up and “turn to whoever I was with and say, ‘How’s he doing?’ I’d turn to them and say, ‘I’m doing pretty good, and I can still hear you,’” he said.
LeBlanc, 58, was painfully familiar with the disease — his mother, grandfather and great-grandmother had it, and receiving his diagnosis was devastating. But, he said, “I did not want to stay in that dark place.”
His mother never wanted to talk about her Alzheimer’s and became withdrawn after her diagnosis. But LeBlanc started travelling and speaking publicly, hoping to educate people about how Alzheimer’s feels from the inside.
LeBlanc uses humour as a coping mechanism.
“It’s the people who are really my friends who will joke and say, ‘Hey, do you have the 20 bucks you owe me?’ And then I have to stop and think, and they’ll start laughing.”
Karen Stobbe, 54, has spent a third of her life as a caregiver, first for her father, who had Alzheimer’s and died in 2000, and then for her mother, who had the disease for 17 years and died last March.
She had trained as an actress and found that improv skills also worked with them — following their cues no matter how unexpected they were. Stobbe has plenty of tips. Don’t deny; agree. Don’t argue. When a patient is asking for something unreasonable, rather than saying “no,” say “yes, and” — then insert a suggestion that is feasible.
“If someone says, ‘I want to go home,’ you can say, ‘Yes, and it’s a little chilly; let’s get a sweater,’” she said. “It’s calming her down and saying, ‘Yes, I hear you.’”
Staying positive means letting go of expectations of how things should be, Stobbe said. “If someone’s ripping up napkins and they’re getting joy out of it, why not let them do it?”
It can be rewarding to get to know their world. If they see a duck on your head, playing along with it can allow everyone to relax and have fun. “Laugh or sing with them,” she said, “and they see it’s OK.”
Tom and Peggy Misciagna make a point of having fun. They go square-dancing. He’d never played a musical instrument before, but took up the violin.
Keeping things loose and flowing is something Peggy does to make her own life easier. But it also puts Tom at ease.
Like the day he was in the bathroom shaving and she heard him yell, “Oh my gosh, what have I done?”
He appeared in the doorway — with only one eyebrow. “Can you fix it?” he asked. “Nope,” she said, unable to stop laughing. “Just shave off the other one. It’s only an eyebrow.”