Dementia. And Shirley Bassey.

My mum doesn’t know who I am.

Sadly, I don’t mean that in a spiritual, angsty kind of way - she literally has no idea who I am. Sometimes I’m one of her sisters. Sometimes I’m a nurse. Sometimes I’m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. It’s a bit like being in Quantum Leap, but without Al or Ziggy to tell me what the hell I’m meant to do.

If you look at this situation objectively it's bizarre, but despite the unpredictability of day to day events there’s a surreal normality about it now. Most of the time it’s fine - you just have to get on with it and play along, even see the funny side, but sometimes reality hits hard. Remembering that we’re never going to have a coherent conversation again feels almost like a physical blow.

Up until a few years ago it wasn’t like this. I was 29 and generally having a pleasant life. I’d pop in and see mum a few times a week and we spoke almost daily on the phone. Then, in what seemed like a matter of weeks, everything changed. She started ringing me up, day and night, panicking. Asking what time it was. How many kids she had. What their names were. Who those people were in the photos on the mantelpiece. Hardly University Challenge, but I used to dread those calls.

What did I do? All I could do. Answer the questions and try to reassure her that she wasn’t losing her mind, that it wasn’t a big deal. But, after months of appointments and trips to the Memory Clinic, we were finally sent home with a diagnosis of Lewy Body dementia, a shiny 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 new born baby, but with less support and no balloons. So, as it turned out, mum was losing her mind. Terrifyingly quickly, in fact, to the extent that whatever it was that made her ‘her’ has now pretty much gone.

Ironically she was initially just delighted that it wasn’t Alzheimer’s, because that’s what her mum had died of years before. My mum cared for her mum for years. And now it’s her turn to be cared for, in a messed up, parallel nightmare that has essentially ripped my family to shreds. You’d be surprised how quickly siblings can fall out with each other when they’re all faced with something that’s completely beyond their control.

Even the doctors are surprised at how quickly the disease is progressing. One of them said it was ‘racing’ along, which was exciting, but he couldn’t tell us why. I don’t even really understand what’s happening to my mum’s brain, to be honest. Something to do with proteins and chemicals (science has never been my strong point). All I do know is that this is a race we are never going to win.

Although I don’t cry as much now. Not nearly as much as I did when all this started. When I first googled Lewy Body (and read the shiny leaflet) it sounded so horrendous that I thought I’d never stop crying. But not anymore. I’ve seen too much of it now, which is depressing. Nobody should become so used to seeing a person dying a bit more each day that they don’t even cry about it.

I’ve seen every single way in which my mum has been gradually destroyed by this pitiless disease, but I’m still not sure how I’m supposed to feel about it when there’s nothing tangible to grieve. ‘Waking grief’, that’s what someone called it. When the person you knew is gone, but not gone. It’s not ‘waking grief’. It’s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you’re ok.

But then nobody teaches you how to grieve, do they? Especially when there’s no funeral to go to, just a never-ending stream of Social Services meetings that don’t seem to achieve anything. I know that my mum will never come back, but it’s very hard to grieve for someone when they’re sitting next to you eating biscuits and asking you to sing ‘Goldfinger’.

#dementia #carer #grief

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