I’ve written this special blog for Dementia Action Week about how dementia has affected my family.
There are lots of great things about getting older. There’s the wisdom, the memories, the wisdom… Did I already mention the wisdom? Oh, and the memories!
But there are downsides. For one the body starts doing odd things. Yesterday I did a snake tongue wee that managed to soak both walls before getting even remotely near the bowl. I’ve begun to sweat in unusual places (Aldi mainly), and my hair hasn’t just migrated south for the winter, but elected to semi-retire there and open a holistic coffee shop.
But, of course, it can be a whole lot worse than that.
I was still at home, steaming up a bedroom with Debbie Harry and Kate Bush posters when my Nan began to go doolally (technical term this, look it up). Nan had always been a bit of an oddity. Sweet and round, and with a tendency to say “Oooooo-oooooo!” a lot, it occurred to me at even a young age that she was perhaps not the sharpest tool in the box. She claimed, as a girl, to have been chased into the Woolly Woods by zeppelins, although no-one was ever quite sure if she actually knew what a zeppelin – or a euphemism – was. She kept the back door open at all times so that if the house was ever struck by lightning, it ‘could get back out.’ And her method of resupplying – put new provisions in one side of the sideboard, and take older items from the other side – meant that I was actually quite mature before I realised that Maltesers weren’t supposed to be chewy.
So, she was a sweet-natured, bumbly bumble bee of a woman who napped a lot, appeared welded into her housecoat, and always seemed to be watching teatime TV shows where grunting gentlemen in pants jumped on top of each other. And then she just appeared to lose any ability to function. Overnight, my Mum was now responsible for all of Nan’s medical appointments, bills, coal deliveries, the purchasing of non-chewy confectionary… Everything.
Mum started pulling rancid bacon out of Nan’s sideboard and finding talc in the fridge. Nan forgot how to bathe herself, and people who came round the house became ‘Those People’ rather than, you know, highly professional health workers . She even began to claim that she’d chatted with Les Dawson, Ena Sharples and Giant Haystacks (that’s a hell of a WhatsApp group!), still sweetish and simple, but somehow spoiling, like a fruit fermenting in the sun.
The real change was to my Mum. She would come home from Nan’s and the stress would have made her hair stand on end, and her eyes wild. Though she was stoic, just occasionally, the tension erupted out of her like a geyser.
Finally, Nan was admitted into a care home, where she spent the rest of her long life, smiling, saying “Ooooo-oooo!” and forgetting you existed the moment you stepped out of her line of sight.
I encountered dementia again a few times at a distance when I was doing community work. And then, it came for my Mother.
When Dad died in his seventies, Mum, typically stoic, just got on with it, embracing a new brace of grandkids and surrendering all her personal freedom to a dog and the war against bindweed. “I miss him every single day duck,” she’d tell me, pinching my cheek with Swarfega cracked fingers.
(I want to reassure you at this point that I am NOT actually any kind of water fowl. It’s a Northern thing. Like friendliness, and chips with curry sauce. Only one of which is a good thing.)
After Dad, Mum’s life got smaller. She was irrationally wary of courgettes, troubled by olives, and when we once brought samosas to a family gathering, she all but recoiled in terror. And the idea of going to a place where you sat and drank coffee and ate cake just for the pleasure of it…. Well, not her thank you very much! She turned down so many invitations that you began to worry that your children were dicks. Which occasionally they were, to be fair. And she was so over focussed on ‘not being a burden,’ that it became, well, burdensome.
It had always been a point of hilarity for us five kids that Mum would go through the entire family – including, daughters and pets (alive or deceased) – before she remembered my name. But now she was almost beginning to list household objects before she got to me. The pool of things she would talk about got smaller and smaller. I noticed how she would avoid using names altogether. If you asked her a question she would avoid answering. She didn’t talk about anything that hadn’t happened either in, or to the house. There are doorstep con-artists who have not said the word ‘guttering’ as much as she did.
At the doctors she would somehow always manage to pull it together. But the periods of greater lucidity, began to be followed by ever more loopy flights of fancy. She would tell me about things that she had ‘watched’ on the radio, or regale me of tales of Dad and her brother at school, even though they’d grown up in different towns.
As is nearly always the case, the siblings who were the nearest took on the bulk of Mum’s care. When I talked to my sister on the phone I could not see her hair stood on end, and her eyes wild, but I could definitely hear it.
It had always been a point of hilarity for us five kids that Mum would go through the entire family – including, daughters and pets (alive or deceased) - before she remembered my name. But now she was almost beginning to list household objects before she got to me. The pool of things she would talk about got smaller and smaller. I noticed how she would avoid using names altogether. If you asked her a question she would avoid answering.
At the doctors she would somehow always manage to pull it together. But the periods of greater lucidity, began to be followed by ever more loopy flights of fancy. She would tell me about things that she had ‘watched’ on the radio, or regale me of tales of Dad and her brother at school, even though they’d grown up in different towns.
As is nearly always the case, the siblings who were the nearest took on the bulk of Mum’s care. When I talked to my sister on the phone I could not see her hair stood on end, and her eyes wild, but I could definitely hear it.
Predictably, the malaise deepened, and Mum began to lose the little strategies with which she’d been trying to convince us she was fine. She replaced subterfuge and sleight of hand with frustration, anger and occasionally a meanness that had never been in her before.
In the end we moved her into a care home by stealth. Within days she hadn’t forgotten that she’d previously lived somewhere else so much as forgotten that this new home hadn’t been hers all along. Peeved by the noisy, nosey strangers who borrowed HER mugs without asking, she hoarded anything left lying around – including, sadly, the other residents’ TEETH – because, after all, if she’d found it in HER home, then it must belong to HER, right?
The dutiful phone calls became a chore. She had become obsessed by something outside in the garden that she couldn’t remember the name of, couldn’t describe, didn’t know why it was there, or who had put it there, and ten minutes of every call would be this same conversation. (It was a kid’s windmill. Whoopee.) She would forget who I was five minutes into the call, or she would instantly want to be away. It was like we were being ghosted by our own Mother. The only meaningful moment – as much as it could be – came at the end of each call when she would say: “I DO love you, you know duck. You DO know that don’t you?”
When I got the call that Mum was dying, I remember feeling: “What? AGAIN?” I’d been mourning her in small ways for a while by then.
I was the last to arrive. She looked like a pile of ash on the bed, grey, cold, and about to be blown away. And then, just as I leaned in to kiss her cheek, her eyes opened, and we all noticed that there was just a fleeting guttering of the flame that had already seemed extinguished. She smiled, as though one final thought had sparked in the stripped and deserted department store of her brain before fading down back into the dark: “Oh look! It’s our Sandy! Er, no… Rex! Kizzy..? Jock! Bunty..?”
Thanks Mum!
*These are the words of Mark and not Carers in Bedfordshire
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