Carers look after their loved ones Credit: Pixabay

Norrms McNamara: The horror of this disease

Jim Parker

As I sit here with heavy heart and even heavier eyes, I wonder if, or when, this nightmare will ever end.

The last few nights have been horrendous as hour after hour I am shouting, screaming and having the sort of night terrors you would only see if you are over the age of 21 and have a very strong stomach.

Last night was no exception, but actually worse.

It wasn’t in intervals of hours, but minutes and started within ten minutes of closing my eyes, only finishing when I screamed out so hard this morning I had to get up at 6.45am because enough was enough.

Not only was it not fair on my ‘angel’ wife Elaine, but my mind and senses could take no more of this torment.

And tormented is what I am. My soul is tested to the limit because of my Lewy Body’s type dementia.

My body aches because of lack of sleep and my mind has started to become foggy and muddled because of the incessant flashbacks I keep getting after the nights of hallucinations and night terrors.

This is how it really is, my friends.

What you see sometimes is a laughing, smiling, cheery bloke where nothing bothers him.

Truth is sometimes I feel so broken inside. I feel as if I am dying slowly and am unable to do anything about it.

I look across the room in the evening at my beautiful wife and I can see how tired she is, far more than me, and all I want to do is to turn the clock back to when we were both happily working in successful jobs, with no money worries and living life as it should be.

Having to rely on others is something we have never done and what was ours, was ours, and worked hard for. I would go back to work tomorrow if I was able to.

Sometimes I want to run and run and not stop running until I have exhausted every bit of dementia out of my mind and body,

I have no idea where I would run to but it wouldn’t matter, as long as every step rid me of this awful illness!

I would run until either the good Lord took me or Lewy Body’s would leave me once and for all.

Elaine, my angel, walked into the bedroom two nights ago as I was weeping uncontrollably.

It was one of the most awful moments of my life as she had caught me at my absolute worst and I want so much to protect her from the deep grief and sorrow I sometimes feel .

I am meant to protect my wife and children, not add to their problems.

So much has changed, so very, very much.

Days are longer now; nights are even longer – peppered with screeches and screams that you would only hear from a horror film.

Daylight hours take so long to arrive and when they do, instead of the dawn of a new light beaming through our windows, it’s over taken by the feeling of sheer exhaustion that shatters the day before it even starts.

I am so sorry this is not my usual happy chappy, fire in belly blog, but sometimes, just sometimes, the sheer horror of this disease has to be spoken about and discussed.

Not only does it help me but, I hope, it helps others understand the huge amount of work done by the ‘angels’ on this earth who are carers and loved ones who love and look after people just like myself around the world.