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Front Line of Caring Series: Living with Dementia

Front Line of Caring Series: Living with Dementia

Published on:
June 6, 2023


Wayne led our Christmas Walk round Rochester brilliantly in December. Just the right sights, laughs, timings and gasp-worthy nuggets of information as we strolled down the High Street decked out in its Dickensian finery.  His has little memory of it now but he still retains a sense of its great success and how much his expertise was appreciated.  We sent him and thank you email afterwards and this was his reply:

“Thank for your kind words. It was such an honour and great pleasure to be able to give something back to the group for all that we get all year round. The incredible buzz I got from feeling useful and “normal” had me smiling and happily reporting to my national dementia group who were much impressed. Today I shall shout it out loud and proud to the dementia cafe I run here. A very proud moment indeed.”

So this is Wayne, pictured in Sissinghurst Castle Gardens last April, who kicks off our new series of blogs from carers, the people they care for and other guest celebrities in which we explore themes and ideas relevant to their extraordinary lives.

Wayne's Story

My actual diagnosis was 2014 but I’d been ducking and diving for 10 years before I risked getting a formal diagnosis. There was no choice by then. When things are going wrong for no understandable reason, when you’re getting lost – not recognising where are are or why you’re there – you start having worries about brain tumours and all sorts of things. In the end it was almost a relief to find a reason. There’s nothing to be gained by not being positive.

I have vascular dementia and Alzheimers – chunks of each. I didn’t really notice the Alzheimers –  the forgetfulness for many many years. It was the vascular dementia that was wrecking my emotions and senses but my memory has been affected more and more over the last 3-4 years.

I’ve become more reliant on other mechanisms besides my brain: phones, computers, pencil and paper, other people, double checking, making two copies of things. Trying to be efficient, structured and tidy. Putting things back exactly where they’re supposed to be is a lot better than spending the next 2 days trying to find the bloody thing.

Dementia also means keeping in your life only the people who have importance and specific meaning. You haven’t got the ability – this is going to sound awful – to be wasting brainpower and effort on people who are irrelevant. Your circle of people gets smaller. Dementia makes that happen. It might seem as though you’re being rude. But you’re not. It’s survival.

I moved into supported living accommodation a few years ago because I realised that home eventually would not be the right or safe place. Moving way in advance meant that I would know my surroundings, all the staff would know me, the carers know me, the other resident know me and that would be important to my longterm security. It’s worked. By the time I’m needing others to keep my life happy they will know my likes well enough – where I sit in the summer, what I eat, where I like to go on the bus. So it won’t be so traumatic inside of me.

I keep busy. The Darts team and Natter Night on a Monday, I run the Dementia Club on a Thursday. There’s the Stepping Out walks every month and I teach on campus at 3 universities – West London, Canterbury Christchurch and Medway plus online stuff for Sheffield, Birmingham, Northampton. The course is “Living With Dementia”.

Communication with others is so important to humans, but that’s the trouble with dementia. You start to lose confidence, then people start talking for you. Then you lose the chance to practice and then you go quiet. I’ve seen it happen here. A relative will start correcting my friend with dementia and he’ll just fall silent. That is devastating.

Mentally and emotionally, having dementia massively gets to you at times. If people say they don’t fear it they’re lying. There is a massive amount of fear. A massive amount of anger and frustration about what’s been taken and why. Even somebody like me who is bright and aware and careful about planning for the future – I know that it’s completely out of my control and that terrifies me. I don’t know when it’s going to come. You can never be sure when you go to bed that “you” are going to be the person that walks up in the morning. That suddenly it might not be “you” tomorrow.

Cor, yes, that thought makes me live. It’s not as dramatic as “live each day as your last” but you have to be aware to strain every bit of sweetness out of every moment. Dementia is not The End. It gives you the chance of a new beginning – a new opportunity to end what you didn’t like and just do the good stuff.

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