A Guest Post – Living with Dementia

Last December, we shared dementia sufferer, Norrms McNamara’s Christmas Light comparison to help people understand how it feels to live with dementia. It simply explains how, one by one, the lights and the memories switch off – BUT with a nudge, sometimes the lights can come back on.

Music, Memories & Dementia

Norrms is the founder of the Purple Angel Dementia Awareness Campaign. Besides raising awareness, providing FREE MP3 players loaded with a dementia sufferers favourite music is just one of his initiatives. Music is proven to reduce anxiety and depression, maintain language and speech and bring back happy memories of a life before dementia.

As Norrms explains in the video below, music lights up the brain like no other activity. He says

We found that, by placing the MP3 headphones on dementia sufferers intermittently during the day, their brain activity is stimulated and switches on all kinds of emotions – even bringing back the ability to converse in some cases.

Whilst the music is playing they can remember where they heard the music and what they were doing at the time. Sometimes they remember how they used to love playing a musical instrument. It is without a doubt amazing to witness.

Understanding Dementia

Norrms was diagnosed with early onset dementia at the age of 50, eleven years ago, and has been open and honest about how it effects his daily life and his family. Whilst different types of dementia can effect individuals in different ways, we’ve asked Norrms to share his personal experience of living with dementia. We hope it helps our readers understand the brain disease more.

Norrms living with Dementia
Norrms outside 10 Downing Street at the launch of Dementia Friends

Telling the truth about dementia, by Norrms McNamara

Sitting here at my computer, first of all, it starts with the slightest flutter of the heart, a reddening of the face, then my whole mood changes, and emptiness enfolds my whole being, and all of a sudden I feel so lost and so alone. How can this be? I have the most supportive family and friends in the world, and yet, here I sit, alone and very very scared!!

Every now and then the whole reality of what’s happening to me hits home!! I have been diagnosed with dementia for 11 years now!! Just now and then my mind and body come to the same conclusion and I am at a loss of how to overcome this. I feel so alone with this disease. Is it knowing there is no cure? Is it because I know those that care for me can care, but not cure?? Do others know I think like this?? (They do now!!) And how many more like me, before me and after me will feel the same way until a cure is found??

I sit, head in hands, listening to every sound around me, always keeping an ear out for my Angel, (Elaine) just in case she catches me like this, worrying about the future, the past 11 years, and everything that I may do from now on!! I despair at how our lives have changed dramatically, both personally and financially, and I feel as if it’s all my fault!! My concrete overcoat is now getting heavier!! My hands start to shake and I feel the helplessness that is bearing down on me from above, like a huge weight placed on my chest. I start to think about my children and grandchildren, then my great-grandchildren, and I know they will barely remember me, who will help them now? Who will guide them in the future?

WHAT HAVE I DONE TO DESERVE THIS!! I can’t remember ever being that bad!! Then, as if someone has turned on a tap, the tears come, hard and fast, so hard I can’t breathe and my chest and stomach heaving up and down and my sides hurt so much because of the motion, but I can’t stop, the tears, the sobs the terrible visions that fly past my eyes just won’t cease!! I am fighting for my breath, my life, my very existence!! I start to go dizzy because of lack of oxygen, I have no memory of ever being as upset as this before. Suddenly I hear a “NOISE” somewhere in the distance, I can hear something, I am sure I can, something familiar, what is it?? A clicking noise? a key turning? I realize it’s the front door opening and I race as quickly as I am able to the bathroom, face and cheeks wet with salty tears and a heartbeat so out of control it could possibly stop an elephant in its tracks!!

I lock the door behind me and grab the nearest towel, my breathing is a little better now and more under control, just in time for when Elaine asks “Hiya, are you OK ?? “yes” I reply and explain I won’t be long (Don’t have to explain what I am doing in a toilet) By the time I walk out of that bathroom I have the usual huge grin on my face and embrace Elaine probably a little too much, she asks “Are you OK ? To which I reply “of course, why wouldn’t I be ?”

And so my / our life goes back to some kind of normality (if you can say that) and as I sit on the chair and look at the only lady I have ever loved and think “if only she knew?” I am so happy she doesn’t because she has so much to put up with and the last thing I would ever want to be was a burden and make her worry more than she does now. And yet deep down I have that sneaking feeling she does, she can tell the signs, but ours is silent respect for each other at this moment, and always will be.

The Purple Angel Dementia Awareness Campaign

Norrms McNamara is the founder of the Global Purple Angel Dementia Awareness campaign.

He says “I was first diagnosed (wrongly) with the Alzheimer’s type dementia, only to be told three years later it was actually Lewy Bodys dementia. I have long campaigned for a better diagnosis for all, as well as better understanding of the disease. Please visit the Purple Angel website to learn more about the following:

  • What is dementia?
  • Understanding dementia
  • World Rocks Against Dementia
  • Memory Cafes
  • Used MP3 player donation
  • Order a free MP3 player with personalised playlist

Dementia Care in Sussex

Kingsway CareGivers

If you are caring for someone with dementia and need support, Kingsway Care have dementia specialists and highly trained, competent CareGivers ready to help you.

We also offer in-house training for family members and advice on home adjustments to make life easier for the dementia sufferer. Please call our friendly team for a chat on 01234 077444 or email info@kingswaycare.com

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