In lockdown with a rarer dementia: ‘I’ve changed’

It’s hard to describe posterior cortical atrophy (PCA). People think I’m daft when I try to explain that I can see  something but at the same time I can’t see it.

Things all join together if there’s a clutter of stuff. On supermarket shelves, all the tins merge together and it looks like one big blob. I’ve basically got to come out, give it 10 or 15 minutes, then go back in and try it again.

I also have issues with black holes – a rubber mat or a puddle looks like a hole as I get up to it.

Press the orange play button to hear Michael’s story in his own words:

Couldn’t cope

I was one of those people who couldn’t stay indoors, I always had to be out. But at the start of the pandemic, I was sent a letter saying that I had to shield.

They later told me that I could go out to the shops, but it’s impossible for me to work out two metres distance, I just can’t.

If somebody is on the same pavement as me, I’ve got to cross the road – that way I know I’ve got my two metres.

I live on my own and, before the pandemic, I would meet a few people in town for tea and coffee. And I had hospital appointments, the occupational therapist coming out, and face-to-face groups for people with dementia.

Once we went into the first lockdown, they were all took off me. I’ll be honest, at the very start I didn’t think I was going to get through it.

I just couldn’t cope. It was actually affecting my speech – I was forgetting how to talk.

I knew the only way to get through it was to start making routines for in the house. Pick a room, totally clean the whole room. One day I’ll do downstairs, the next day I’ll do upstairs.

Switch away

When I started to get busier again, although it was all through Zoom, it was bringing my speech back. I enjoy the Face it Together support group, but doing it virtually isn’t the same as actually meeting the people.

That said, I don’t think I’m going to be able to mix with people inside when lockdown lifts – I’ve changed.

It now feels claustrophobic and I get sort of nervous. There’s so much noise, too many distractions.

I’m currently having cancer treatment and I actually think it’s affecting the dementia symptoms. I have the treatment on a Tuesday, and until Thursday night I’m out like a light. It’s like having a really bad dose of flu. I start to get confused a lot easier and it makes me sleep a terrible lot.

An Alzheimer’s Society Companion Call volunteer phones me up once a week. It’s a friendly conversation, a basic chit chat, which is useful.

I’ve always played the flute and accordion, but I can’t read music now, so another routine is to listen to CDs and see if I can play the songs. It actually switches me away from dementia, I seem to forget about it when I start playing.