I knew myself things were not going straight for me but couldn’t comprehend what was happening to me. You think you’re walking a straight line but in fact really you are snaking around that straight line.
Eventually, my family prompted me to go and see my GP. They knew something wasn’t right. I was leaving pans on the cooker, leaving the door wide open when I went out and then I was parking the car and not being able to find it.
I was shattered when I received the dementia diagnosis. I’d heard of dementia and Alzheimer’s and when you see it with people in the latter stages you can recognise there is something wrong because they can be in their own world.
I know that is where I’m heading but hopefully it will be a long time in the future. I was under the impression that was going to happen to me within weeks or months. You hear of people with cancer going suddenly downhill and I thought that was going to be the case with me.
I couldn’t talk to anyone because I couldn’t express myself to my doctors or family. That was when I thought about suicide. I was that low. Things were that bad.
But then I just blurted out how I was feeling. I was thinking I’d be no good to anybody within weeks and I’d become a burden, go back to my childhood. I was worried about the effect it would have on the family, including the grandkids.
In the end it was talking to my family, my nurse and Karen Wilkinson, who is a dementia-support worker for the Alzheimer’s Society and is amazing, that I realised there is a life if you want to grasp it after a dementia diagnosis. I wasn’t going to be a waste of space.
To put it bluntly they re-assured me I would not be a vegetable which is a word I don’t like to say. But that was how I felt. I was worried I’d be sitting in a corner being no good to nobody within weeks. I know I will happen but the more I try to keep my brain active the better.
Now I want to publicly express the way life changes for people with dementia and the only way to do that is to talk to strangers. I want to help people understand more about dementia which is why I’ve been working with Alzheimer’s Society and Gentoo who’ve been great.
People bury their heads in the sand – which is understandable – but they must face up to reality. They have to talk to family, friends and doctors and nurses, people you know and trust, and tell them you think something is wrong.
My old life was totally different to what it is now with the awareness work I’m doing. I wouldn’t speak to strangers. Now I’m forcing myself to do that because I want people to know what I’m going through so they might see it in their own families and know how to deal with people with dementia better.
It is surprising how many people I’ve struck a chord with. That makes me think at least someone is listening and that’s got to be positive. Hopefully that’ll get people they care about to seek vital help and go see a doctor.
It was only when I got my confidence up I told my mates at my local club because I knew they’d see something different in me. I wanted them to understand. Since then they’ve been great. I still play darts for the team but with my dementia I struggle with figures. When that happens they’ll tell me what I want. If I go to the toilet during away games someone will trot after us in case I go the wrong way.
I don’t cook as much as I used to but I still have a go when the wife is in. Nine times out of ten I’ll burn the food but I try my best. I go to the shops with a shopping list but can’t always read my notes. It’s a funny thing to explain.
I still love going to watch Sunderland. I’ve watched the lads all my life. That’s also funny I can’t normally handle crowds in places like the MetroCentre or big shops. I panic but at the match I’m fine. We’ve all got the same focus. The Stadium of Light is a sanctuary.
*The theme of Dementia Awareness Week is ‘Don’t Bottle It Up,’ Anyone with concerns about dementia should contact the Alzheimer’s Society County Durham office on 0191 3890400.
*Dementia Awareness Week 2014 runs from May 18-24. Find out more at alzheimers.org.uk/daw2014. If you have any concerns about dementia, you can call Alzheimer’s Society’s National Dementia Helpline for confidential advice on 0300 222 11 22. You can also email enquiries to helpline@alzheimers.org.uk
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