My mum doesn’t know who I am.
Sadly, I don’t mean that in a spiritual, metaphorical kind of way. She literally has no idea who the fuck I am. I could be her sister for all she knows. Sometimes I am. Sometimes I’m her dead mother. Sometimes I’m somebody she went to school with. Most of the time it’s fine, strangely – she’s generally pretty genial towards me, but sometimes it hits hard. Like someone’s punched me in the chest.
This really is a completely fucked up situation. But it’s my life now.
Up until a few years ago it wasn’t like this. I was 29, living with my friends and generally having a nice life. I’d pop in and see mum a few times a week and we spoke almost daily on the phone. Then in what now seems like a matter of days, it all went completely tits up. Mum started ringing me up, day and night, panicking. Asking what month it was. Whether it was morning or evening. How many kids she had. That sort of thing. 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 the thing is, she was losing her mind. Really fucking quickly. And now her mind has pretty much gone.
About six months later, mum was diagnosed with Lewy Body Dementia at the age of 64. Ironically, she was initially just delighted that it wasn’t Alzheimer’s, because that’s what her mum died of ten years before. Mum cared for her mum for years. And now I’m caring for her in a kind of messed up, parallel nightmare that has essentially ripped my family to shreds.
I’ve spent thousands of hours with mum over the past three years. I’ve seen every single way she’s been gradually destroyed by this pitiless disease. And I honestly wish she’d been hit by a bus instead. At least then I’d have something definite to grieve. It’s very surreal to have to grieve for someone when they’re sitting next to you drinking a cup of tea. ‘Waking grief’, that’s what it’s called. When the person you knew is gone, but not gone. I completely disagree with that. It’s not ‘waking grief’. It’s waking, sleeping, relentless fucking despair that never goes away, even when you think you’re ok.
Though I don’t cry much now. Not nearly as much as I did when this all started. I remember reading about Lewy Body and literally sobbing with fear about what was going to happen. I think I’ve seen too much of it now. And that scares me. Nobody should have to become so used to seeing a person dying a bit more each day that they don’t cry about it. But then nobody teaches you how to grieve, do they. Especially not when there’s no funeral to go to, just endless fucking Social Services meetings.