So how quickly have you adapted to this new world we find ourselves in? I actually don’t know how many weeks it is now. Having dementia takes away that ability to keep up with time, to keep up with what’s going on. 

In the beginning I tried to keep abreast of everything I needed to know, but within a day or two my brain felt two steps behind all the time and I eventually gave up. I no longer devour the news for signs of change, signs of what’s to come. Instead I rely on my daughters to tell me. Tell me when I can do something new or when I might see changes on the street. I can cope with simple news. 

So what have you been doing with your time during this lockdown? All you researchers out there must have been in a state of despair when your planned projects could no longer progress as they should; when face to face meetings with participants were cancelled, focus groups impossible to run. 

That’s where I felt people with dementia were one step ahead for once in our lives! We’d always used zoom to meet every week. We call ourselves the Zoomettes. All women living with dementia from all corners of the UK, many who would never have met if it hadn’t have been for our weekly meeting on line. Yes, we miss our hugs desperately. Hugging seems more important for many of us now, our emotional senses far out playing our cognitive abilities. We’ll forget a name in an instance but we never forget how people make us feel and our weekly chat on line is full of emotion, laughter, tears that we easily share with one another. Yes zoom has suddenly become a life saver for may…

Yet we also immediately continued some of our research online. Yes, people with dementia can conduct their own research! Dementia Enquirers is a National Lottery Funded project by Innovations in Dementia. People with dementia leading from the front, inviting professionals through our door instead of us being invited through their.we not naïve enough to think we can do it all on our own so we ask for help in the areas we need it. We’re challenging the world of Ethics as we’ve realised how inaccessible this can be but also how it can disable us rather than enable us to conduct and take part in research. Tom Shakespeare has been our ally recently in helping us to write a paper, all done via zoom. 

So, you can see how we’ve been very busy despite this lockdown. 

On a personal level, I found the lockdown very frightening and unsettling at the beginning. I likened it to the diagnosis process all over again. That feeling of abandonment, isolation, of simply not knowing. However, also similar to diagnosis, I learnt that the only person that was going to get me through this was me as people with dementia were forgotten once more; left off the vulnerable lists for online shopping; once more feeling like we were at the bottom of the pile. So I began to adapt, I had to in order to survive and not let my dementia decline. 

I took up photography. Going out each day for my daily exercise with my camera round my neck, giving me a purpose for my walk. I began posting them on the village Facebook page and started to make new friends. People would wave and shout hello when they saw me in the street. These new people didn’t know I had dementia – what does dementia look like? So gradually I began to drop seeds of knowledge into my postings. Explain I had dementia. Explain why I could use a camera – because it was the same model I’d used for years prior to dementia and when I bought the updated model, all the buttons were in the same place and I intuitively knew where to click. I gently explained why I could type far better than speak, because that part of my brain isn’t broken, how typing is my escape from dementia. 

Eventually I introduced my book and now many of them have read it. All this because of the lockdown.

So despite this strange world we find ourselves in, I’ve been carrying on sowing seeds of knowledge about dementia, simply locally instead of all over the country.

Will I have forgotten how to travel alone once this is all over? Will I have forgotten how? Lost more than I’ve gained? Well I never dwell on things I have no control over. I’ll deal with those when the time comes. 

I hope I haven’t as before this all occurred I was due to do my next challenge – Flying over my beloved paradise of Keswick on a tandem paraglide. So if anything will make me work at getting my brain to cooperate after all this is over, that thought surely will. Will it surpass my parachute jump over the east coast, time will tell…..

 

 

 

Wendy Mitchell

Author of Sunday Times Best Seller:

Somebody I Used to Know - Published in the UK by Bloomsbury

Now proud and humbled to be DrDr from Hull and Bradford Universities

 

Please feel free to read my blog on living with dementia:

www.whichmeamitoday.wordpress.com

or follow me on Twitter: @WendyPMitchell