It’s World Alzheimer’s Day 2015. I’m writing to tell you how I feel about your impact on my life.
When you arrived again at my door four years ago I was devastated and terrified.
There you stood, cocky, full of your own self-importance, as usual, refusing to leave empty-handed. You’d come, not for me – though you may one day – but for my dad.
How cruel of you. How greedy. You’d already taken both my dear grandmothers, my strong, independent mother-in-law, and a kind, intelligent friend, who in his 80s still had an amazing zest for life. You snatched another friend with your iron grip, when he was in his 50s, a young working father. And there are so many others I know of too.
You crushed them all, stole everything.
So yes I wept when I knew you’d come for my dad. I cried. Dad cried. My mum cried.
I hope it makes you happy our grief. Because there’ve been bucket loads of it, since you picked on us again.
The tears and the torment came in stages.
First was how dad slowly lost touch with his previous full and active life – his confusion over places and people he knew well, his loss of ability, tools unused no longer recognised, his struggle to do even a child’s simple jigsaw, or put on his own seat belt.
Then he was no longer able to interact, have a conversation, be part of his family’s day to day joys and woes. How could he relate to our lives, when he could no longer understand what was happening in his own?
He began wandering distracted, eyes wide-eyed and vacant, at all times of the day and night. He could no longer feed, wash, or dress himself. The every day mundane parts of being human eluded him – sleep, controlling bladder and bowel, spatial awareness, and that precious gift, learned young as a child, speech.
A great talker throughout his life, dad said less and less and then almost nothing. One night I found myself weeping in front of him as he sat there word-less. It was when his own tears began to fall, I realised I had to adjust and accept this loss. To, as the words of Desiderata advise: “Go placidly amid the noise and haste and remember what peace there may be in silence.”
We did adjust mum and I to this new changed dad.
But – oh dementia, you are so cruel – you drained more and more from him, until only 24/7 specialist carers could nurse the wisp of himself he’d become.
Driving him to this new home was the hardest thing I’ve ever done and the worst day of my life.
I felt the deep despair I’d had since a child, when I saw my grandmother die in a nursing home. I felt lost, without hope. I felt that you dementia had won again.
But dad wasn’t giving up without a fight. He wasn’t ready for you to take all of him. There were moments of humour, things he still enjoyed like a walk in the garden, the kindness and care of the staff, moments of tenderness and moments of precious memory: “Land’s End,” he said to one day pointing at a photograph of the famous landmark. They were the only words he spoke that visit – but music to my ears.
Even in the last hours before his death, he defied you dementia – experiencing all his senses.
He ate chocolate, he ate a banana – clearly savouring the taste, smell, textures and the moment of sweetness. He saw his family, looking through a photo album with me silent, but aware. He felt the touch and bond with another human, in a spontaneous hug with one of the staff.
And he spoke too, albeit briefly – but showing his mind was still capable of thinking of adventure: “Where are you off to dad?” I asked as he got up to wander. “Down the town!” he replied. “OK. See you later then,” I said.
It was the last exchange of words between us. He died less than 24 hours later of a heart attack.
So you see dementia, you may have broken his heart – but you never broke his spirit.
And you never stopped him being loved.
One final thing to say before I go. Dad’s death did quell my spirit for a time. It stole my resolve to fight you, defy you – I stopped campaigning, I stopped writing.
I know I can do nothing to stop your cruel invasion of people’s lives. In the time I’ve written this, who knows how many terrible calling cards you’ve left.
But I see so much around me that is good – intelligent, brave, determined people fighting dementia, challenging the grip you have. It gives me hope. It gives me optimism.
Oh yes I still wonder if you might come and find me one day, but I no longer carry the fear of you I learnt as a child.
With my words dementia I defy you and whilst I can, I always will.