Norrms McNamara: A fragment of my mind

Carers need support too

We should listen to carers and take their ideas on board - Credit: Getty Images/iStockphoto

If just a minute fragment of my mind is left behind after dementia has done its worst I will be a happy man.

I have never asked for much nor expected much in my life but if this happened as a legacy it would be wonderful.

And if that fragment of my mind included all my writings, videos, and blogs about living with my dementia, left behind to help others after I have gone, then even better.

You see living with this horrid disease is, and can be, so hard at times; it takes away your confidence to do the things you used to.

You lose your life skills, some lose their speech completely and some become so introvert they disappear into a world of their own, so you see it’s so important to try and help others while you can.

Sometimes, on my bad days, I find it hard to put a sentence together, my food misses my mouth and the two legs attached to my body feel as if they have been taken over by someone with a remote control and they want to go the exact opposite way that I do!

I have lost count at the tuts and stares I have had from people who think I am the worse for wear through drink and yet apart from a Christmas dinner glass of wine or birthday tipple, I don’t touch it!

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But I have to say no matter what I am going through, I always seem to be able to put it down in word, in type, in blogs - thank goodness for spellcheck though.

My tongue may feel as if I have had a transplant but my fingers carry on, and long may that be, even though I know it won’t last forever.

I suppose everybody wants to leave some kind of legacy behind and I suppose I hope this will be mine.

I was asked recently if I could talk to all the dementia organisations around the UK what would I say. My answer was a simple one but from the heart.

I would say please don’t forget who comes first in all this, it’s not the politicians, the councillors, the powers that be - but the people on the ground, those who are unpaid carers who cannot clock off or ask for someone to take over while they have a break.

It's also the thousands of paid carers who are so stretched at the moment, they are all doing 70 plus hours a week.

And certainly not forgetting those who have dementia. Are they being asked what they want? What are their opinions? What they would like to see different or want changing for the better?

Have we forgotten those that matters the most?

Have we forgotten that those who do this day in, day out, need our support? Yes, it's OK coming out with the new recommendations and strategies, but how many are actually converted into action and benefit the carers or the people with dementia?

When was the last time you sat and thought: 'Mmm, that Idea that MP has come up with to help us carers/nurses is a brilliant idea and to see it working and helping those we care for is brilliant'?

Well? If we listen to those who actually do that job and take their ideas on board, I would bet a week’s wages that things would change for the better.

What do you think? We are here to listen.