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What they don’t tell you about dementia

My mum doesn’t know who I am. Sadly, I don’t mean that in an angsty way – she literally has no idea who I am. Sometimes I’m her sister. Sometimes I’m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. My mum was diagnosed with dementia with Lewy bodies three years ago, when she was 64 and I was 30. She’d just retired, and we were looking forward to spending more time together.

I’d spent my 20s doing my own thing, having selfishly assumed that we’d have lots of time to get to know each other properly when I got bored of clubbing. I was wrong. Instead of visiting coffee shops, we ended up visiting the memory clinic. After months of appointments we were finally sent home with a diagnosis, an information leaflet and a six-month review booked in to see how we were getting on. I imagine it’s a bit like going home with a newborn baby, but with less support and no balloons. Having previously struggled to even take care of a houseplant, I was fairly apprehensive at the prospect of becoming a carer.

As mum’s dementia progressed I came to realise that despite all the meetings, visits and consultations you have to go through to even get to the diagnosis, nobody actually tells you about the reality of this horrendous disease. They don’t tell you how to deal with your previously gentle mother swearing at you, or that she’ll hit you around the head as you desperately coax her into the bath. Neither do they tell you what sort of nappies to buy when she becomes incontinent, let alone how you’re supposed to persuade her to wear one or stop her taking it off and stashing it in a pillow case. I thought I might be changing nappies at some point in my 30s, but I didn’t imagine it would be like this.

They don’t tell you about the hours of bureaucracy and meetings with social services that you have to trudge through, when what you desperately need is some advice and support. They don’t tell you that it takes six months for them to assess whether you’re entitled to even get on the waiting list for advice and support. They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson, and tries to talk to him. Nobody tells you how to placate the angry parents who think they’ve encountered the world’s frailest child-snatcher. I had no idea what to say to the helpful passerby who insisted on intervening because he’d mistaken her having a meltdown in the street for a geriatric kidnapping.

They don’t tell you how to deal with the crushing realisation that she’s never going to phone you again, let alone see you get married or be a grandmother to your kids. Nobody tells you how to channel the anger you feel that your fellow thirtysomethings’ lives now involve marriage, mortgages and children, and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

They don’t tell you that once she nears the final stage you’ll spend hours desperately trying to feed her a spoonful of hospital jelly even though she’s pretty much given up on eating, because you can’t just watch her starve to death. It doesn’t matter how distraught you are that she’s wasting away before your eyes, or how much it upsets you to agree to the doctor’s request for a DNR order; this disease is relentless in its cruelty.

Dementia has robbed my mum and me of the time we were supposed to have, and I’m still not sure how to feel about it when there’s nothing tangible to mourn. “Waking grief” – that’s what someone called it. When the person you knew is gone, but not gone. But it’s not. It’s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you’re OK. But then nobody tells you how to grieve either, do they? Especially when there’s no funeral to go to, just an endless stream of pointless review meetings.