It's Dementia Awareness Week. Have you seen all the memes doing the rounds on Facebook? About how we can fight this, or the huge strides in the treatment? No? I didn't think so. One of the things I've learnt about dementia since it rudely interrupted our lives is that no one wants to even think about it, let alone talk about it.
This is probably because there's never a good ending – nobody survives, nobody gets better. There's no cure for any type of dementia, and there usually isn't even a diagnosis of what strand you've got until you die.
When you think about dementia, what do you think of? Perhaps a white-haired great granny, with memory loss that is almost endearing – she struggles to remember the names of all her grandchildren, but she loves to chat about years gone by and if you put on some Vera Lynn, she'll sing along.
That's not my mum. When she retired from a lifetime of teaching, mum was looking forward to enjoying walks with her friends, volunteering, and rereading her several thousand books. A lifelong bookworm, her shelves are crammed with theology texts, history books, and other less highbrow novels, including all the Terry Pratchett books published before she got ill. She was also looking forward – as she told me repeatedly – to being a grandmother. She was the only granny-wannabe I knew with a stock of children's books hidden away for when the day came, and when I was pregnant she sewed the most beautiful quilt for my son featuring the Very Hungry Caterpillar.
But when my son was 14 months old, we noticed her personality changing. She shouted at her grandson for chewing the zip of his cardigan. For a woman known for her placid nature, this was a warning sign. She began to lose all social inhibitions and said whatever popped into her head, much to the mortification of everyone around her. Then it became apparent that she was having language problems – she couldn't find the words for things, or connect a written word with an object.
Mum was finally referred to the memory clinic after a disastrous admission for spinal surgery resulted in a massive downturn. A CT scan showed shrinkage of her brain, especially in the areas responsible for speech and language. There are only three medications used to treat dementia, and none of them worked for mum. This is hardly surprising because they only work even a tiny bit – and that means slowing down progression, not reversing it – in less than a third of patients.
So that's it. My beloved parents struggle on, negotiating a healthcare system they barely understand, trying to cope day by day. Dad is incredibly frail himself, and has racked up five emergency hospital admissions so far this year. And every bit of help I try to offer is a battle against his stubborn (and entirely justified) wish to cling on to their independence and the home they've shared for nearly 50 years.
This week is my son's ninth birthday. Once there would have been a lovingly chosen card and present and a rendition of Happy Birthday down the phone. Now he'll get a notelet, addressed to the wrong person in spite of dad's best efforts. Mum doesn't know who he is, or who I am. He doesn't remember her before she got ill, but he shows immense patience with her, reading the menu, explaining what things are and never getting annoyed when she grabs from his plate or gets angry for no reason.
Emotional support is hard to come by. My friends don't want to think about their parents going through it. The best it gets is "oh, I don't know what I'd do - I'm so lucky with my parents". Their mums are a similar age. They are having the grandchildren to stay for a week, holidaying in New Zealand, hiking in the Lake District, and not spending their lives on a treadmill of medical crises. The unfairness of it all is sometimes unbearable.
Without the support of Mumsnetters in the ever-wonderful Dementia and Elderly Parents areas, I honestly don't know how I'd cope. To have people who understand what it's like trying to come up with present ideas for a parent who has no interest in anything, and can't be taken out anywhere, or telling your compos mentis parent that their house is a health hazard, or tackling the all too common issue of the sibling who chooses not to care, is a gift. We travel this awful, heartbreaking road together, and every day brings a new way to have our hearts broken. But we're not alone, and that means so much.