Wow, it is more than half was through the #DAI #Hello my name is World Alzheimer’s Month series! Our members stories have been really well received, and we thank them for sharing them, and especially want to thank you for reading and watching them. On Day 18 of #WAM2018, we are proud to share the story of one of our Canadian members, Roger Marple. Thank you Roger for taking the time to write it and allowing us to share it here.
Still living well with dementia
I find as time as time goes on, seeing thousands of people worldwide still living well with dementia despite any challenges they may experience, gives me hope for continuing to live well with this disease.
Often, I speak about what hope and living well looks like with dementia. I have been accused by people in public media for “sugar coating” this disease. They always make it a point to remind me this is a terminal disease and the inevitable outcome is death. I’ve been accused by people for spreading false hope. To those people I want to say, I do not have an ego so large to think I can beat this disease. To all of those people I acknowledge this disease has a 100% mortality rate. I’m a realist; I know the outcome of this disease.
Now that I have that out of the way I want to share some comments made on twitter from people regarding a discussion about dementia:
Tom Harrington Verified account @cbctom
Tom Harrington Retweeted Roger Marple
My latest follow. A courageous Canadian who’s discussing his experience with #Alzheimers. We need this. Please RT, follow & learn. #ENDAlz
This comment was made by Tom Harrington. Tom is the host of a very popular CBC radio news show in Canada called The World this Hour. I must say I like him and I am enjoying his comments and views on twitter. Tom is no stranger to dementia in his life. Both of his parents had a form of dementia. I thought it was nice of him to mention me. I agree with Tom, we need more people to understand dementia in our communities.
He was responding to a comment that I had made on Twitter:
Roger Marple Retweeted Sophie Leggett
Alzheimer’s isn’t the end. We all live with this terminal condition called life. Although dementia is different for everyone, it is not uncommon to live well with this disease and enjoy life for some time to come. Something I do every day…
And to Tom’s and my comments another person responded with this:
Replying to @cbctom
But Alzheimers always gets worse once it begins, never better. Don’t give people false hope.
When I read this comment, I wasn’t surprised. In fact I have learnt to expect this. People have said comments such as this often to me. This person who read Tom’s and my comments only got one thing out of this. Bottom line, things are going to get worse with dementia and there is no hope.
I thought I would do a role reversal with this person’s comment. Instead of using the word Alzheimer’s in the sentence, let’s insert another terminal condition called life. Now let’s look at this sentence.
But life always gets worse once it begins, never gets better. Don’t give people false hope.
There might be some logic to this comment; eventually things will get worse with this terminal condition called life. Having said that, is that a reason not to have hope living with this terminal condition?
Often I see jokes about Alzheimer’s. I see derogatory comments. This is one of many faces of stigma with dementia. If you are not sure what I mean by this I encourage you to Google “Alzheimer’s jokes”. You will find hundreds of them not to mention many websites with more jokes on them with dementia/Alzheimer’s.
When I look for jokes about other serious diseases in our society like ALS or cancer, I cannot find any. It is just not okay to joke about these conditions, and usually, if we hear of a joke about this, people are furious at comments made. So I pose the question, why is it fair game for people to make fun of people with a form of dementia? Why can’t people see how fundamentally wrong this is?
What if the role was reversed? What if people with dementia posted thousands of jokes poking fun at your weakest points you may experience living with your terminal condition called life? What if thousands of people shared jokes about you and the challenges you may experience on public media, like Facebook, or in your community? What if you opened a birthday card with a joke about your struggles? Alzheimer’s for example.
Would you feel like crawling under a rock and hiding your challenges from the masses making fun of you and not engaging in life to the fullest, regardless of your challenges? Often this is the case for people living with dementia and our loved ones who live with this disease as much as we do. I see it all the time.
As a person living with dementia, here is a promise I will make to all of you. I promise I will not make fun of any challenges you may have with your terminal condition called life. I will see who you are regardless of any challenges you may have. I will recognize and support you to live your life to the fullest regardless of challenges you have. I promise to recognize what hope looks like for you living your life to the fullest, with the time you have left, so you can live a good quality life. And most of all, I will respect who you are.
My hope is that someday all of us will recognize people with a terminal diagnosis of dementia, and people with a terminal condition called life, that both groups have the same hopes and dreams. Perhaps with time we can walk in each other’s shoes and have a better understanding for each other. People with dementia want to live a full life for as long as we can — just as we all do. We may have to work a little harder at it that’s all. We are all the same my friends.
I have a philosophy in life. I show my utmost respect to everyone I meet. Would it be too much to ask for the same in return?
By the way, Tom Harrington had a response to this person’s comments about “false hope” with dementia:
Replying to: This isn’t false hope. I lost both my parents to it. This is about an act of courage and awareness. It’s the cancer of the 21st century and we need to focus on it more.
Tom made some good points here. He understands the need for greater understanding of dementia. He knows what dementia in his life looks like. There is something to be said about lived experience. At the end of the day it will be understanding that will eliminate the stigma that we have to endure living with dementia. As far as the courage part? I look forward to the day when courage is not needed when speaking about our journey with dementia.
Last but not least, all who live with dementia in your lives know this. One person by the name of Naquib Mabfouz said “Fear doesn’t prevent death. It prevents life” Please do not let fear from stigma get in the way of living well with dementia. The problem is with the person perpetuating the stigma, not you. Remember that.
As I said, my name is Roger. I live well with dementia. My hopes and dreams in life have not changed.
Roger Marple © 2018
DAI’s vision is “A World where people with dementia are fully valued and included.”