Norman Mc Namara has lived with dementia for almost seven years. He was diagnosed with Alzheimer’s at age fifty. A few years later, he was diagnosed instead with Lewy body dementia. He is a vocal advocate for, and author and poet on dementia awareness. Based in the UK, he was recently awarded Rotary International’s Paul Harris Fellow Recognition for his contributions to the community and beyond. Pictured here with his wife, Elaine.
The Caregiver’s Voice has been a long-time supporter of Mc Namara’s work because he helps raise awareness of what it is like living with the disease. Through the highs and the lows, he maintains a pleasant upbeat demeanor. Just look at him and his wife!
He recently wrote the following (unedited):
Please don’t …
by Norm Mc Namara
PLEASE DON’T
“Mock” my Dementia, i was once like you, i once worked full time to keep and provide for my family. I had so many hopes and dreams, i STILL DO !! You dont even know me, you have no idea what i have achieved in the past and what i hope to still achieve now, please dont mock me just for being ill, i wouldn’t if roles where reversed, you dont even know me, please dont mock me just because i have dementia.
PLEASE DON’T
“Stare at me,” let’s stare together at the changes that are now being made within the world of dementia, let us stare together in wonderment at how the stigma of this disease is being disassembled before our very eyes, brick by brick the wall of Stigma is coming down.
PLEASE DON’T
“Ignore Me” i have so much to say, i have early stages of dementia, have you even heard of that? Dementia doesn’t just suddenly “Happen” it creeps up on you slowly, in stages, but if you LISTEN to me i can help you recognise the signs of early dementia so you can help your loved ones to carry on living a full life.
PLEASE DON’T
“Tell THAT Joke” about dementia, i have heard them all, and they are not funny!! When you forget something, why do you think it’s funny to say “Ha ha, i must have dementia” If you got a pain in the back or abdomen would you say “Ha ha, i think i may have Cancer ??? i think not!!! Dementia is a terminal disease with no cure at thew moment, nothing much funny about that!!
PLEASE DON’T
“Write us off” We have so much to give, so much to do, so many more people to meet, to laugh with, to love, to cherish. So many more grandchildren to see born and to teach the ways of the world, I am not finished, in fact i am just beginning to see life for what it really is, short, but beautiful, and so can you, if only you embrace it fully.
I am me, i am Norrms, Just a boy from Bolton who has been diagnosed with the awful disease of dementia, please see me and not my disease xxxxxxxxxxxxxxxxxxx
Please share, please copy, please print off and please put up in workplaces etc.
Norm Mc Namara co-founded the The Purple Angel Dementia Awareness Campaign.
The Caregiver’s Voice: While people living with the disease can still speak, we are bound to listen. They encourage us to learn more about what it’s like living with dementia. They remind us when we forget. Let us honor them by taking heed of their words.
WOW! It makes people aware of how we treat individuals with dementia and that they have frustration, fear, and hope like the rest of us! I think individuals with dementia may be treated negatively because the other person is terrified they may someday be the same. Thank you Norm for your courage to share.
Thank YOU for highlighting the fear many feel but feel uncomfortable expressing, Linda. That fear of “What if?” brings to mind the saying, “It’s always about ME.” I’m interested in learning what others feel.
Wow Brenda, I thought I proof read that but apparently not! I have had to tell people to stop etc….. Sorry
Don, I took the liberty to edit your post a bit. Thanks for commenting and remember, as an overwhelmed and stressed caregiver, sometimes you too will have bouts of what has been called “caregiver dementia.”
I can tell you stories of my own experiences, which were quite similar to my late father’s journey with Alzheimer’s. Pretty scary, at times!
Great Statement Norm. I am printing and hanging in my house. My wife has severe dementia and I have had to tell [people to] stop
thestaring and stopthelaughing between yourselves. She thinks you are laughing at her when you don’t include her in the joke.