As the coronavirus lockdown restrictions in the UK begin to ease, 13 year old A'yaan thinks about his grandmother, who has Alzheimer's disease. We have published A'yaan's piece here completely unedited.
Dementia and Lockdown
By A’yaan Abdul-Mughis, aged thirteen
It was something that was happening in another country, far away. A news item to read, sympathise with and then carry on with our daily lives.
But then it turned up on our own doorstep and we literally couldn’t carry on with our daily lives any more. The floodgates opened and we were hit by wave upon wave of statistics and numbers.
In fact, there was a whole new vocabulary to grapple with. Lockdown, shielding, flattening curves, daily briefings, stockpiling. So much to take in and process.
Life changed beyond recognition almost overnight.
And as if that wasn’t enough, it all came with a healthy serving of panic and anxiety and denial and sadness and disbelief and anger and confusion. The emotions didn’t have the decency to come one at a time, though. No, they came tumbling in a frightening and oppressive cascade.
How do you deal with the loss of liberty? The loss of a former life? The uncertainty of the future? How do you feel when there is nowhere to escape to because it is everywhere?
It is my last year at prep school and I was sad to have missed out on lots of ‘lasts’ and the rites of passage that come with leaving a school you have been at since you were two years old. It was like someone had started writing the chapter but left it unfinished. So many unspoken questions. No answers.
I have stayed in touch with my grandma via daily video chats and as I looked in her eyes one day during one of those chats right at the start of lockdown, it dawned on me.
That’s exactly what you must have gone through, Grandma. That’s exactly what you must have felt.
This must be what you live with every day. Mental lockdown. Loss. Fear of the unknown. That cascade of emotions. Those unanswered questions. Trying to process feelings. Trying to remember a better time. Trying to make sense of it all. But your brain is not co-operating with you. Not helping you to process or remember. It never makes sense. It never will. To you. Or to those around you.
We’re coming out of lockdown, but you don’t have that choice.
I’m so sorry, Grandma, and I hope that our collective experience of vulnerability will help us to remember those that have to live this way and don’t have choices.
And just as there were small blessings in the midst of the lockdown experience – the quality family time, the slower pace of life - so there are in the Alzheimer’s journey as well.
So when I next see you, Grandma, I will squeeze your hand a little tighter, hold you a little longer in my arms and be that bit more understanding, because I have brushed against some of the feelings that must have haunted you for years.
My prayers to all those who live with dementia in their lives. And just as we look forward to a Covid free world, may we live to see a world released from the shackles of dementia.
You are not alone
Alzheimer’s Society is here for you, whatever your question. We can answer queries about all aspects of dementia, and offer advice and support for all associated challenges, including coronavirus.