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OPINION

Behind the smile: living with dementia

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Norman McNamara, who has been living with dementia for six years, gives an insight into how this feels

Norman_McNamara

Norman with TV presenter Fiona Phillips

Sitting here at my computer, first of all it starts with the slightest flutter of the heart, a reddening of the face, then my mood changes, emptiness enfolds my whole being  and suddenly 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 six years. Just now and then does 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 who care for me can care, but not cure? Do others know I think like this? (Well they do now!) And how many more like 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) in case she catches me like this, worrying about the future, the past six years, and everything that I may do from now on. I despair at how our lives have changed so dramatically, both personal 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 a 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 guide them in the future?

Then, as if someone has turned on a tap, the tears come, hard and fast – so hard I can’t breathe. My chest heaves and my sides hurt, 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 from lack of oxygen, I have no memory of ever being as upset as this before.

Suddenly I hear a noise in the distance, something familiar, what is it? I realise it’s the front door opening and I race as quick as I am able to the bathroom, face and cheeks wet with 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 tell her I won’t be long. 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. “Are you OK?” she asks again, to which I reply “of course, why wouldn’t I be?”

And so our life goes back to some kind of normality 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 is a burden and make her worry more than she does now. And yet deep down I have that sneaking feeling she does know. She can tell the signs, but ours is a silent respect for each other at this moment, and always will be. But next time, I may not hear the key in the door in time to get to the bathroom.

 

Norm is a contributor to Torbay Dementia Action Alliance’s website. Read more of his insights at http://tdaa.co.uk/

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