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Last week, my mum took herself into central London.
She was looking for the offices of a magazine she subscribes to; I’m not sure exactly why. But she couldn’t find the building, so she got back on the train and came home, and began calling them instead.
My mum is 67 years old.
She likes shopping, the mountains, going to the snow centre in Hemel Hempstead, getting her hair done, exhibitions at the RA in Green Park, and concerts at the Royal Albert Hall. Every Saturday at 6pm she’ll go for dinner in Prezzo, and a few months ago – to our collective bafflement – she started going to church.
My mum also has Frontotemporal dementia.
Which, if you’re not familiar – and I wasn’t, so why would you be – is the official name for Pick’s Disease; the most common form of dementia affecting young people.
(The one and only upside to dementia, it turns out, is being considered young if you’re under 65).
She was diagnosed two years ago, but we’d been watching the slow deterioration of her capacity to understand, communicate, and behave in what would be considered a socially acceptable way for a while before that.
Dementia’s trump card is its slow progression, which is either a blessing or a curse depending on what stage you’re at. It dawdles along for years removing the names of everyday objects and people, steadily chipping away at empathy, tipping into weird and compulsive behaviour. At times, it shifts into a mode I like to call “wtf, you’re making no sense”.
Essentially, it makes pinpointing the exact moment the person is no longer able to do something a difficult game. And as Pick’s sufferers have little to no awareness that there’s anything seriously wrong, it’s the family who have decide when to allow the person their independence, and when to take it away.
Before mum was diagnosed, I had an idea of what dementia looked like in my head.
It had the withered, expressionless face of an eldery person, a mind that forgot how to find their way home, and a body that fell over. It was also clad in beige.
In reality, mum looks like any other ex-head teacher who’s seven years into retirement. She goes to daily classes at the gym, takes the tube, walks the dog, wears make up – although increasingly dad has to remind her to put it on – and colour co-ordinates her clothes (usually either purple, pink, red or blue).
She presents as a normal 60-something, but after a couple of minutes of one-way conversation, you’ll realise something’s not quite right.
If you know what’s wrong, you’ll understand and roll with it.
If you don’t, you’ll probably do what the staff at the woman’s magazine did, which is start to worry and call 101 to have the police do a check.
Despite affecting a frankly ridiculous amount of people worldwide, dementia isn’t really talked about that much. Least of all by the family and friends going through it, and rarely by the sufferers themselves – who aren’t always elderly, frail, and forgetting their way.
September 21st was World Alzheimer’s Day, and September is World Alzheimer’s Month, which sets out to raise awareness of the different types of dementia in all the forms it takes. And that’s why I’m going slightly off topic today and writing this – because the more people who are aware that there are people like my mum around the world, and in this city, the better.
Because she’ll undoubtedly continue taking herself up to London on errands she can’t explain and we don’t understand. And we’ll continue to let her, as long as it’s safe.
You can donate money to the Alzheimer’s Society here.
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