Hiding from dementia
By Bill Wilson
Our life before dementia could, I guess be described as wonderful. I was a career civil servant and my wife Dr Jo Wilson, a high-flying international executive and Doctor of Philosophy. We would spend our holidays abroad – lucky enough to enjoy luxury cruises or sun-drenched beaches in the Caribbean and Far East. We shopped for designer labels and enjoyed good food and wine. The oven in our new kitchen didn’t get much use!
We were a couple in our 60s and lived a full and active life together.
It took a long while before I really noticed changes in Jo’s behaviour. On looking back it started with the small things. Almost imperceptible. Minor changes not just memory loss but different ways of thinking. Jo started to accept things at face value which she would never have done previously: you’ve won a prize, I need to borrow some money for whatever reason. A scam to you and me, but real to Jo.
More things began to change. Depth perception became an issue. I would see a trickle of water on the ground but Jo would see a bottomless river. I would see a black mat to wipe your feet at the entrance to a supermarket. Jo saw a vast chasm. Yet still I couldn’t put the pieces of the jigsaw together. Or could I? I didn’t want to rather than couldn’t. How easy is it to look the other way, to bury my head in the sand to just want to carry on with our lives as they were, with the woman who meant the whole world to me. My wife and best friend of 50 years who I loved with all my heart and soul. I wasn’t ready for that to change, not even slightly. I refused to see what was staring me in the face. Jo wouldn’t see it either.
Turning the clock back, would I do things differently? I would like to think I would, but I feel sure I wouldn’t. In my heart of hearts, I’d known long before it was confirmed that Jo had dementia. Was I naive? Did I just not want to see it? Or was I afraid? Well I think it’s safe to say I was scared not just of the diagnosis but what I envisioned dementia was – in my head.
Like many other people, I associated dementia with words like ‘despair’, ‘worry’, ‘anxiety’, ‘stress’, and ‘loneliness’. Initially – and in my mind the diagnosis would only confirm my worst fears.
It’s not a healthy place to be but I was Jo’s husband, never her carer. I was doing my job, looking after my family. Anyway there’s nothing wrong!
Always there in my mind but pushed to the very back. Placed uncarefully in a box with those other negative thoughts. Slammed tightly shut so I don’t have to think nor deal with them. It wasn’t until much later when I became more accepting that I finally opened Pandora’s box.
Once opened it can’t be closed. Do I wish I’d opened it sooner? Yes. Would it have helped us both? Yes. Could our lives have been improved earlier? Yes.
A friend from the Alzheimer’s society opened my eyes when they said to me: it’s not called getting old it’s called getting ill. Dementia is an illness. If your body tells you you’re unwell you see a GP, dementia is no different (easy for me to say now).
My lived experience of hiding from dementia allows me to say to you today, if you are consciously or unconsciously averse to getting a dementia diagnosis. Just get it.
Reach out to North Tyneside Carers’ Centre – there are people, including me, there to help you.
If you are a carer for someone with dementia, join our next support group on Friday 5 September with a guest appearance from Betty Hill. She is from North Tyneside Art Studio and will be giving us some helpful advice on how to boost our wellbeing through journaling and mindful drawing. Join us at the White Swan Centre in Killingworth from 10am – 12pm.
Book a place by calling 0191 249 6480 or email enquiries@ntcarers.co.uk.
About Bill:
Since 2020 Bill has been an influencing campaigner on health and social care issues. As a speaker, panelist and host at conferences and events Bill is driving forward the dementia agenda. Bill works closely with Alzheimer’s Society and the BBC in order to highlight and fix what he says is a broken care system. He is also a trustee at North Tyneside Carers Centre.