Rethinking our approach to Alzheimer’s
“In the beginning, you could not have paid me any amount of money to speak in public,” Brenda told me. “The first time I did I was a mess.” Now she can speak for up to an hour – “I do have to have notes” – and always has people to prompt her.
Ms. Hounam, a former accountant who lives in Paris, Ont., was diagnosed at 53 with the early onset of a disease that has only one public profile. It’s portrayed as a tragedy that robs its victims of their selves, upends families and – you’ve seen the headlines – is the potential calamity awaiting us all. In fact, some middle-aged people I know are so terrified that they will get “it,” they can’t even joke about having a lousy memory.
Brenda Hounam says that when she was first diagnosed in 2000, “I lost everything.” She couldn’t work and when she told people about her condition, she says, she was met with “patronage, avoidance and denial.”
But now she is passionate about conveying that “there’s hope and possibility.” The general public, she says, doesn’t know anything about that.
She’s been instrumental in getting people with dementia together to produce a series of pamphlets called By Us For Us (“at first they said you can’t put eight people with dementia in a room together and get this done”), offering tips on how to get the best out of life. A recent pamphlet, Living and Celebrating Life Through Leisure, suggests readers “see the world through the eyes of your grandchildren and the young people in your life as they have unconditional acceptance,” play Nintendo and Wii, and “DVD your favourite TV shows or news and watch them several times to follow the story line.”
I loved talking to Ms. Hounam. We both laughed when I said, “You’ve had this disease for 11 years,” and she paused and said, “Have I?” Her disease has definitely progressed, she said, but “I always seem to find something to keep me going.” Without that sense of purpose, “you get drawn into this disease very quickly.”
I also spoke to Mary McKinlay, 66, who is from Napanee, Ont., was diagnosed five years ago, and writes a blog – My New Adventure ~ Alzheimers (alzheimer-journey.blogspot.com). A recent entry which began “Sometimes I really hate being me!” detailed her misadventures with what she thought was a rice cooker but turned out to be a small crock pot. (Her husband Jim is now going to put a sign on the crock pot saying “no rice.”)
Last year, even though she was terrified, she delivered the keynote at a Kingston forum and said, “I got a standing ovation.” And this weekend, she’s actually looking forward to being a featured speaker: “This disease has taken away my fear – it’s great!”
I normally get suspicious of any attempt to prettify a disease, like the upbeat pink ribbonizing of breast cancer, to the point that some women write they are “grateful” they got the disease. So when A Changing Melody’s organizer, Sherry Dupuis, director of the Murray Alzheimer Research and Education Program at the University of Waterloo, pointed out to me that most of the media “perpetuates a tragedy discourse” about Alzheimer’s, I pushed back – what, you want us to say it isn’t a terrible disease?
But she held her ground: “There is an alternative discourse, one of hope. We try to show this isn’t just about challenge and loss. There’s also the feeling that “I’ve grown because of this. I'm an evolving person. I have the right to be treated as a valuable citizen.”
Most of the attendees, who come with family members and caregivers, are in the early stages of the disease and even though they find the day – from 10 to 3 p.m. – overwhelming, they come away inspired, reassured and even entertained.
Something about these two women lifted my soul: I suppose because, as a writer, I am aware of what effort it takes, even in a so-called healthy mind, to string words together to form a narrative, to tell your story in a way that is convincing and powerful enough so others will connect, let alone benefit.
Ms. McKinlay says she will talk about every aspect of her life, and the changes she and Jim have made to accommodate her disease. For instance, they used to love bicycling but when it became too much for her, her husband got a tandem bicycle so “I could sit back and enjoy the ride.” They’ve stopped even that now, but, she says, “I’ve discovered each day is a joy. You have to laugh at yourself.”
She then offered advice that's good for everyone who is getting older, never mind whether they have Alzheimer’s: “Just make everything work as long as you can.”