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

Michael Andrews in Bradford, originally from Northern Ireland, is 61. He tells us about life with posterior cortical atrophy (PCA), a type of dementia, during lockdown.

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.

Michael Andrews

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.

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Dementia together magazine: Feb/Mar 21

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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4 comments

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Must be very hard on you especially being on your own,but keep your spirits up as much as possible,your doing a great job good luck .

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Im commenting as I know how rare pca is. My Dad has it too and unfortunately isnt even aware of his condition. He believes his very poor sight is a problem with the eyes. We have explained a little about it when bringing him to memory clinic appointments etc but he literally forgets in 2 mins. Hes currently still living alone with carers calling 4 times a day and able to walk to shop as its only 200 yds from house. The workers are trustworthy and he just hands them his wallet as he cant see the notes. I think he will very soon need nursing home care as hes becoming very anxious.
I wish you well.

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My mum has PCA. She isn’t able to describe what she sees, so I like to read up on other peoples perspectives to try and understand her more and be able to help support her better.
I’m glad that you are able to still enjoy playing your music.

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You are, and will continue to be, an inspiration to others Michael

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