I was originally going to write this week’s blog entirely about a close friend who died exactly five years ago today. Stan suffered severely from Alzheimer’s for the last 18 months of his life and, September being Dementia Awareness Month, it seemed appropriate to reflect his struggle with this dreadful disease. However, my brushes with this crippling illness stem from long before and since I knew Stan. And whilst there are similarities in symptoms, everyone I’ve known has suffered in their own uniquely devastating way. Apologies that this is longer than usual, but they all have their story……
Some of my fondest early childhood memories are of times spent with my grandmother, on my mother’s side. Born in 1902 and a pioneer of her time, she’d travelled the world as a nanny, brought up two children after the early death of her husband and ran her own business. She was stylish, clever and kind. I remember the thrill of being taken out for tea or ice cream by her, holding her always gloved hand and being introduced to her friends, just as if I was a proper grown up.
Then, in her early 70s, dementia came like a thief in the night and stole her composure and her character away. She went from being incredibly independent to a confused, fragile, shadow of her former self. I was 15 when she died, unrecognisable then as the Granny of my childhood, but I’ve never lost sight of who she really was.
My grandmother on my father’s side also developed dementia in later life, but she eased into it gently, almost as if she’d put on a pair of comfy slippers oblivious that she’d ever worn shoes. On visits to her nursing home she gradually just stopped remembering who her family were and anything about her former life. But a bright occasion was one pre-Christmas sing song when united by music, we danced and sang together, a happy moment.
My husband John’s mother was completely the opposite. A spirited and elegant lady in her 80s, she fretted over the loss of her memory and declining faculties. Her absent-mindedness was amusing at first, she’d leave scatty messages on the answerphone and notes all over the house, but her behaviour became increasingly erratic. Traumatised by the loss of her sanity, and refusing to give in to it, very sadly she eventually had to be sectioned under the Mental Health Act. A tragic end to a full and accomplished life.
Our friend Stan similarly strove to maintain his independence to the last, his staunch courage having been forged from an incredible career in the diplomatic and intelligence services. Modest, kind and unassuming, he had a brilliant mind and sense of humour and was fascinating to talk and listen to – one of those rare people it truly was an immense privilege to know.
As his memory and focus declined, he clung on to every ounce of ability, insisting on wheeling the trolley on supermarket trips, then when shopping outings had become too much, still unpacking the groceries, even if he forgot to eat them later. He became unable to properly look after himself, totally confused by the most basic of things, but he always had a winning smile and a “thank you, my dear.”
I worried about him constantly, then the inevitable happened and he was badly injured in a night-time fall, which meant he finally did have to go into a care home. He had the odd lucid moment, when his frustration with his failing mind overwhelmed him and he said he just wanted to die. He slipped away peacefully just short of his 91st birthday. We were on holiday and someone texted to tell me the “sad” news. But I wasn’t sad for Stan. I knew for him it was a blessed release.
One of my best friends, younger than me, has “lost” her husband Dave to Posterior Cortical Atrophy, or PCA. It’s what the author Terry Pratchett has, and it affects speech, sight, co-ordination and spatial awareness. From being a socially active and working man with a young teenage son, Dave is no longer well enough to live at home. A huge impact on his family and such a difficult time for them all.
And then of course there’s my dad. He was diagnosed with vascular dementia two years ago, aged 70. It’s scary to think how fast he’s gone downhill. Once a skilled craftsman, he no longer recognises the tools in his workshop, let alone having any idea how to use them. Each time I visit it seems he has deteriorated a little bit more, his personality ebbing slowly and heart-breakingly away.
It’s hard for him, but more so for my mum, who’s his full-time carer. Both to give Mum a break, and because Dad was once a keen cyclist, I took him off to the Tour of Britain race when it touched down in Devon last week. He seemed to enjoy it, but couldn’t really take in this major event he would once have revelled in. Then, in walking back to the car, a spot he would have known well, we somehow lost our way and went entirely in the wrong direction. By the time I’d realised the mistake, it was too far to retrace our steps. I had to make an SOS to Mum, disturbing her afternoon of rare peace and quiet.
I laughed about it with her later. What a pair – a demented dad and a doolally daughter. Then the next afternoon whilst washing the kitchen floor, tears started pouring down my face and wouldn’t stop. There are moments when the sheer sadness of it all just gets to you.
I’m in no way a poet, but I can bear witness to the impact of dementia on the lives of people I love and care for. This kind of sums it up:
Sometimes you laugh, sometimes you cry. You may get deeply frustrated, or just smile and sigh. You may reach out to help, or powerless stand by.
There’s no right or wrong, no must or must not. There’s no making sense of it – not even one jot. You can wish it away, but can’t change what they’ve got.
For dementia comes like a thief in the night, stealing your loved ones whilst leaving them in sight.
You yearn for a moment when they know you, and say: “Hi”. But also weep your goodbyes before ever they die.
You remember them always and in all ways – and continue, sometimes to laugh and sometimes to cry.
*A running footnote: I clocked up 28 miles this week, and a few visits to the gym. Now, I’m tapering back ready for the Bournemouth Marathon on October 6th. My number arrived today – 6046. I’ll be pinning it to my BRACE vest with pride, delighted to be running for a charity that’s trying to find a cure for dementia.
*And a final quick ps….if you read last week’s “message in a bottle” blog and you want to know where the flags were from, I’ve added an update. Did you get them all?!
As ever, thanks for reading this week’s rather longer instalment.