Real stories

Managing life with dementia and the impact of daytime sleepiness

I think my illness has advanced reasonably slowly. I live on my own, I look after myself. So I can manage, although I’m not quite sure how long I can manage for. I fear I must expect the disease to advance. People seem to have enormously different experiences. 

I read quite a lot. I can read a book and remember it, and not get lost. I can watch a television thriller and not get lost. I do forget things, but doesn’t everyone? 

The main thing – and I think it is due to the Alzheimer’s – is that I go to bed for a couple of hours, at least twice a day, and that takes time away from me.

Control 

I feel in control of my life at the moment. There’s a certain amount of solitude, because I live on my own, but that was true even before the Alzheimer’s. 

My partner died of dementia with Lewy bodies some years ago. I had a grandmother and aunt who had Alzheimer’s, which makes me wonder if it’s in the family. 

There’s a park a few minutes away. I go there a few times a week for a short walk. I feel in command of that.

I have a carer who does shopping for me. I go to the theatre. I go for meals with people sometimes. I go to coffee bars. Life isn’t too bad really. 

I did a lot on the computer before I retired, but now I don’t find it easy to proceed with the internet, which is a nuisance. 

But I did do quite a few Zoom calls during lockdown, with friends and a book club. I played chess on Zoom, but I’m finding that more difficult now. I look at the strategy and my mind goes foggy. 

I attend a mature gay men and women’s group in Cambridge now and then. They meet once a week and during lockdown it had to be on Zoom.

Support 

I used to get a call about once a month from Alzheimer’s Society. I didn’t know sleeping so much can be a symptom, but the dementia support lady told me that. It's really helpful to know. 

Age UK organised someone who visits once a week, just to have a chat for an hour. I’ve been impressed by both Age UK and Alzheimer’s Society. 

I think the prejudice against Alzheimer’s is possibly worse than the prejudice against gay people. I notice in myself – I don’t mind telling people some things about me, but I don’t like telling them I have Alzheimer’s. 

I’d be prepared to consider attending a dementia-specific LGBT group, where I can be myself. I don’t especially want 100% of my friends to be gay, but it’s nice to have some.