Defeating stigma of dementia
Myrna Norman was going to have a bit of “fun” with her carload of grandchildren. A steep hill in front of her, she started down, and put the pedal to the floor.
She remembers their excited exclamations as she pushed the car as hard as it would go. She recalls it with eyes wide, her hand covering her mouth, with unspoken thoughts about how wrong it could have gone.
Thinking back, Myrna can’t believe it was her doing it, or some of the other things that made her children worry about her.
But eventually, she got an explanation, and she can speak frankly about it.
The Maple Ridge senior is in the early stages of Alzheimer’s, but confronts one of the most feared diseases of old age head-on. There is a powerful stigma attached to the mind-destroying disease, but Myrna discusses her behaviour and limitations with not a trace of embarrassment.
More understanding of this disease is crucial, because the Baby Boomers – that massive post-war generation that is now sometimes called the Grey Wave – is reaching an age where more will be hit with Alzheimer’s and other dementia.
At a December conference in England on dementia, health ministers from the Group of Eight industrialized countries vowed to find a cure or treatment for the disease in 12 years.
“The summit is driven by an increasing realization of the impending tidal wave of dementia as populations are aging worldwide,” noted Andrew Sixsmith, an SFU Gerontology Research Centre director. “Indeed, the issue may be most pressing in the developing world, where we will see the biggest increases in numbers of older people by 2050.”
The cost to the health care system will be in the billions. Last month, the Canadian Medical Association, which is urging a national strategy on dementia, noted the $33 billion annual cost of dementia could rise to $300 billion per year by 2040 – more than is spent on health care in Canada at present.
There is a personal toll being taken daily on people and families affected but dementia.
Myrna recalls another time when she took the kids into the city to go skating, and got lost on the way home. She had about 20 minutes that were unnerving. She remembers a good cussing session with the grandchildren, too. They thought it was great. Their parents didn’t.
Anyone can get lost, people will tell her. Anyone can lose a word or forget a name. But she knew this was different.
“It’s like a blackout,” is how she describes it.
Myrna made a trip to Vancouver, one she had done many times, but it was that journey that convinced her something was wrong. She almost ran over a flag person. She put her car in drive instead of reverse, and nearly went through a store wall. The car was at a dead stop on a hill, but she had the sensation that the vehicle was rolling backward. She started screaming – “It was real to me.”
“I knew at that point, something was wrong.”
It was about four years ago she was diagnosed with dementia – cells are dying in the frontal lobe of her brain. It is a fatal disease, as the brain eventually loses its ability to control organ function.
“To be diagnosed with something so devastating – you get all your I’s dotted and T’s crossed,” she said.
“I went home, and went into despair for three days.”
She and husband David sold their house, and she surrendered her driver’s licence.
Today she is more positive.
The early diagnosis was a gift, and the disease has been slow-moving. She is on the right medication to clear her thoughts. Myna was having hallucinations, she describes them as “masses of colour,” but they are also controlled now by meds.
Herb Bryce was looking everywhere for the television remote control, but it was just not to be found down the couch or under a cushion. Eventually, it turned up in the refrigerator freezer. Such was life with his wife Ann, in the early days of her Alzheimer’s.
“I noticed she was not fighting me for the crossword anymore,” he said.
And she stopped picking up books. She had always been an “inveterate reader.”
They visited a doctor, who gave her a mental exam. He gave her three words to remember. Then they talked for a bit, and the physician asked what the three words were. She could remember only two of them.
“She was very tense and agitated, and I was leaping to her defence,” he remembers.
They didn’t want to hear the diagnosis.
In 2011, Ann took a “nose dive.” She wasn’t able to perform basic tasks anymore.
She was confused by a clock. She asked her son Crispin, “What’s that?”
Now she is in a home.
He writes about his experiences with his wife. He has documented an almost clinical record of his experiences. Confusion, denial, frustration at burned kettles and dinners, and recognition.
“It’s devastating. Because she was a rock.”
He remembers her unshakable competence at whatever she applied herself to.
Ann got into real estate and “outsold all the men.”
He tells a story about how Ann was driving the kids across the Patullo Bridge every week to attend cadets. Tired of the commute, she starting asking why there were no Cadets in Surrey, found out what was involved, and soon formed a branch of Navy League Cadets, and it took off.
He also felt depression and guilt.
“It’s like a survivor guilt – she got it, and I didn’t. It should have been me.”
Then came realization and resignation.
“You know the score. It’s a fact. You can’t wiggle out of it, and she can’t come back again.”
His wife remembers him, and they still have a relationship.
“She greets me like I’ve been away at the wars,” he smiles. “She clings to me sometimes.”
He enjoys the companionship from a group of Alzheimer’s caregivers, and learning about the disease.
“I was a mess when I went to that class. I was an emotional wreck at that time. To see her deteriorating so rapidly ... it’s like something you see in a movie, not in your life.”
The group also gives him an audience for his writing. He’s done close to 100 poems about 36 journal entries and some short stories. It’s his way of coping.
“It continues to work for me. That’s my therapy – my balance.”
“It’s all ready to go somewhere to be published. I call it A Poem for Ann.”
For Myrna, the diagnosis explained some of her behaviour, “and it gave me a chance to improve my situation,” she said.
She has quality of life, good days, and bad days.
“I like myself when I’m okay.”
She meets with other local people who are also suffering from dementia, at meetings hosted by the Alzheimer’s Society at the Maple Ridge Seniors Village. She takes a leading role. Myrna was always a confident person, involved in her community, and still well spoken. She doesn’t mind sharing her experiences, even if it does affect how other people think of her.
“There’s a huge stigma, but I have this disease,” she said. “And I’m not a religious person, but I do think that people have a duty to help others – that’s the most important part of our lives.”