Dementia Journeys: Same Awakenings

2 Dec, 2013 by

Dementia Journeys: Same Awakenings

Dementia Journeys: Same Awakenings: Norman McNamara reflects on another day waking with dementia.

 

 

 

 

 

 

 

 

Dementia Journeys: Same Awakenings

By Norman McNamara

Each and every day I wake in the hope that yesterday was just a bad dream. I don’t mean the good things we have achieved the day before, but the fact is every day, reality hits home like a thunderbolt!! And I think

“I still have dementia” “I am still terminally ILL”

Today was no different, I awoke same time, same place with the same thoughts, only to be dashed within seconds as I remember the illness that haunts me, that follows me around and that eats away at my every pore and moment of my life. It’s not something I can switch off either, thought I would love to, it’s just not possible. I don’t want this illness!! I don’t want to walk into to town, stumble around because of my spatial awareness which is up the creek and I walk like I am drunk!! I hear EVERY TUT TUT, every sigh and see all the nods and winks heading in my direction

I have Dementia, but I am neither, stupid, blind or deaf!!

I don’t want to be sat in a cafe talking and have Elaine say to me shhhh you’re shouting! It doesn’t bother me but I know it bothers Elaine or she wouldn’t tell me. Elaine says that people stare when I start to shout (I don’t know I am doing this by the way !!) but to be honest, that doesn’t bother me either, but I do feel embarrassed for my “Angel” Elaine. And the sad thing is it doesn’t bother me but it should do! It should annoy the life out of me and would have done a few years ago, but years of having this God Awful Despicable disease has ground away at my embarrassment levels and worn me down to not caring!!

I hurt, my family hurts and my friends hurt, some don’t talk about it, some do, one member of the family takes it in tLonelinessheir stride, one doesn’t!! Such is the devastating effect of dementia on Family and friends, and the thing is, up till now not many with dementia have ever spoken about this. Not many with dementia has ever come out and said how the tears burn as they flow down their face, how they pretend to be asleep at night because they don’t want their wives/husbands/partners to know how we lie awake for hours wondering what the future holds for all and how we shake with fear at the thought of leaving them all to fend for themselves!!!

Most of all they never see the floods of hidden tears that are wept when we/those with Dementia are on their own and try so hard to remember what might be little things to some, but so huge for others.

Maybe I will wake tomorrow and it will be all a bad dream? Maybe I will awake with Elaine telling me to HURRY UP or I will be late for work? Maybe I could carry on with the rest of my life and never think about Dementia again? Maybe

But!! If I hadn’t been diagnosed with this awful disease, would I/us/others have done what we have done over the last few years? Would things have changed so much around the world without the wonderful people I have met driving it forward AS WE FORGED A FRIENDSHIP THAT WILL BE EVERLASTING? Would have I have met so many wonderful, honest hard working people who want to change all the lives of those with dementia and their carers for the better?

Or would I still have the circle of friends I had before my illness? The ones who, once they found out I had dementia left in droves, crossed the street to avoid Elaine and me (Yes that really happened) and became one of the 70% who never got in touch again??

Actually, yes I have dementia, but I am LIVING with it and sharing it with my REAL friends, not such a bad life after all, for however long it may last.

Norman “Norrms” Mc Namara diagnosed six years ago at aged 50 and still fighting it!!!!!

Poem – GOING HOME ?

I shout most nights that I want to go home,

Whilst pacing and walking, feeling alone,

Where is this home? The one that I seek,

Please give me a glimpse, just one peek,

Is it a place of childhood games?

Dirty streets and familiar names

Or is it my faith? Which is sometimes lost?

It ebbs and flows but at what cost?

My vote`s on, it’s a place I know,

But long forgotten, so long ago,

Where I felt safe, secure, content,

Before my memories where heaven sent,

Will I ever arrive, in this mystical place?

And heave a sigh with a contented face,

We will have to wait and see,

But until then, please be patient with me

Norrms (Diagnosed with dementia six years ago and still fighting it)

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