‘Welcome to my world...’
By Jim Mann
Since this piece was published, Jim Mann has been honoured with the Governor General’s Caring Canadian Award for his efforts in raising awareness and reducing stigma around dementia. Learn more about the award here.
I wear a lanyard with the Alzheimer Society’s card that reads: “Please be patient, I have Alzheimer's disease.”
I wear it to engage people. If someone wants to talk to me about Alzheimer's or has a question, ask me. Talk to me. Because, quite frankly, there isn’t enough of that happening around the subject of Alzheimer's and other dementias.
By not talking about it, dementia doesn’t go away. If we don’t ask questions about it, we won’t get answers. And the stigma won’t change. And the stereotype will continue.
Let me give you an example.
We meet for the first time. I introduce myself:
“My name is Jim Mann. I live in Surrey, BC. I am 66 years old; and I have Alzheimer's.”
What do you see? Who do you see? What’s your focus?
Do you zero in on my Alzheimer's as you look at me? Do you immediately think that my cognitive abilities are so limited that I couldn’t possibly have anything meaningful to say? Will you speak to Alice, my wife, right away looking for answers and ignore me? Do you even think I will be able to respond to you?
Some will see me as a fully functioning person to the extent that they will say I don’t have Alzheimer's. In fact, I had one medical professional tell me that after seeing me on a panel, he knew I didn’t have Alzheimer's. How did he know this? He said, “Look at how well you’re dressed.”
See? With this one disease, you get the full-range from people. From being written off as soon as you’re diagnosed to being challenged on the legitimacy of your diagnosis.
I recently heard how one family ignored their dad the minute he was diagnosed with Alzheimer's. The man’s wife and three adult children all talked around him, over him and about him in front of him.
Some may only know a person with dementia in the final stages. They need to be reminded of the early stages of this disease when ‘functioning’ and ‘capable’ are key words.
An acquaintance of mine was told he has Alzheimer's. The day before his diagnosis, he handled the money for his golf group of buddies. The day after, this responsibility was taken away from him.
We can live positively and well after diagnosis. I have a voice – a legitimate voice – through which I can participate in life’s daily routines and in the community.
What do I mean?
I write letters to the editor and they get published. I was a full voting member of the Alzheimer Society of Canada Board of Directors and was a board member at the Alzheimer Society of BC for the full six-year term. I’ve appeared on behalf of the Alzheimer Society before the House of Commons Standing Committee on Finance in Ottawa and the Select Standing Committee on Finance in BC.
Let it be acknowledged that I’m not old and frail. I’m living well with Alzheimer's. And as for communicating – sometimes you can’t shut me up! I’m always ready to talk to an individual or a group.
We’re not all victims. We have a life worth living. It may not be the life we would choose, but it’s still a life.
So you know what? We’re going to make it ours. We’re going to make it worthwhile. We’re going to make our mark in the world and be proud of who and what we are.
Life doesn't end when Alzheimer's begins. Learn how to be there for those who are #StillHere ►