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Dementia and Lockdown: 'This must be what you live with every day, Grandma'
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.
Sandy W
saysA fantastic piece of writing here. Thank you for sharing it..
Barbara Leggett.
saysYou are a wise young man, Bless you . I have a husband who is now in a nursing home with Dementia I got very sick and could not look after him. I do wonder if i did the right thing but no body was willing to look after him for a short time not even his Daughters that makes me feel very sad about that They will not even visit, its just me every other day. When The Corona viris hit nurseing homes had lockdown for nearly 5weeks i did not see him i cried most days . When lockdown was lifted my dear husbands mind and speaking had become so bad he looked so down . I don't know if it will ever be the same again . I say to myself shall i bring him home or has he gone to far . He also falls alot. My tears flow most days after i get home at the sadness of it all. Such a terrible disease.
Laurie Croad
saysLockdown is bad enough, in old age, but separated by restrictions from Children and grandchildren... Modern Technology is great, but not the same as facil contact, touch, hugs and warm feelings... The affected olders in our complex are puzzled and lost. A’yaan Abdul-Mughis tale brought a lump to my throat, and a tear to my eye. Well written, and poignant too. Many thanks for the reminder that there are those around who need our care, more than we need to feel sorry for ourselves. Be at peace, young soul, your heart glows.
Lesley Johnson
saysWhat an insightful, thought provoking piece of writing. Thank you A’yaan.
I pray that the Alzheimer’s journey with your Grandma continues in a contemplative way. Best wishes and thank you.
Choon Noi
saysHi !
I am pleasantly surprised that you view this covid19 lock down as a world that your grandma is in,
I never thought of that, now you have open up a whole new idea . Thank you !
Alison Moitysee
saysThis is a poignant and articulate love letter from a Grandson to his Grandmother - it exudes empathy and compassion on so many levels. It's profound and I found it deeply moving. Echoing my own experiences with my Father, I am so impressed that this sensitive piece has been written by a 13 year old young man. Best Wishes to you and your Grandma. xxx
Margaret foster
saysWell done, young man. You have really made me think. My husband has Alzheimers and has been locked down in his house with carers. His daughter, who has Power of Attorney, has changed the locks, and won't let me visit him now that my lockdown is over, which is illegal. I've seen my solicitor, but the waiting is hard.
Linda Blythen-Hall
saysMargaret, my heart breaks for you and your husband too who must miss you so much. I hope your solicitor acts quickly to resolve this situation for you.
Jen
saysI am so sorry.... Sending you love xxxx
sue
saysI'm so sorry to hear what your husbands daughter is doing to both of you...How selfish can she be......be brave be strong...it will come to an end....look forward to when you can hold your husband in your arms....Love never fails...
Karen
saysWow so perfectly true we have had a little insight into this scary disease ! Well written and eye opening.
Family times together ahead may we never forget. Xxx
Janet
saysMy mum is still with us as your Grandma is still with you , even if they no longer recognise you or know where they are we hope they feel the love we can give them even at a distance . I find if my mum has a day when she is lost , if I sing to her ,one of the songs my grandfather sang she will join in and has some happy moments with me . You are just brilliant to understand how life is for your Grandma . I wish you all good things for your future .
Christina Lane
saysGod bless you young man, you are so wise for your age. I watched my father struggle daily trying to remember me or his lifelong accomplishments and being so upset that he didn’t know where he was or who was supposed to be safe or trustworthy. God only knows how badly my heart broke to lose him in January but I will be forever greatful that he did not have to live through the isolation of this virus. So, when you see your grandma again hug her extra tight and long❤️
Nicola
saysSo young and yet so wise. Thank you for sharing this.