Managing life with dementia and the impact of daytime sleepiness

Jim Herrick in Cambridge, aged 77, tells us how Alzheimer’s and vascular dementia are affecting his day-to-day life.

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.

Jim Herrick

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. 

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5 comments

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I was very interested to read this as I too have to take to my bed at least once a day and I wondered if it was to do with dementia. But it's not due to what I would call sleepiness but a feeling of complete exhaustion. My brain feels tired out, not sleepy. I would love to know how Jim feels about this, to see if it's the same. Is there any way I can be in touch with him? eg would you forward a letter or email? It would be a great comfort to discuss this with someone who understands. In any case, I wish him well.

Thank you for getting in touch, Poitou. We have notified the Dementia together magazine team in case they are able to pass on your message to Jim.

In the meantime, you may be interested to learn about our online community, Talking Point, where you can speak with other people who may share your experiences.

You can browse the community, or sign up to join the conversations, for free here: https://forum.alzheimers.org.uk

We hope this helps for now.

Alzheimer’s Society website team

My husband has vascular seminar and sleeps so much. Does not eat much now and has lost weight and muscle. He says he too tired to walk and seems to have no motivation to do any thing any more he’s 74 has vascular dementia since he was diagnosed on Dec 2918 but I think he had it before the official diagnosis. So what’s the best thing to help him now ??

Hello Annette,

We're sorry to hear this. It sounds like you might benefit from speaking to one of our trained dementia advisers about your husband's situation by calling our Dementia Connect support line on 0333 150 3456. They can listen to you and provide specific information, support and advice.

Our advisers are available seven days a week, and you can find opening hours for our support line here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line

We hope this helps. Wishing you all the best.

Alzheimer's Society blog team

Hi all. Just had a great chat with Nadine to discuss various options around dealing with Alzheimer’s and Dementia within the family. It was extremely useful and I appreciate the time given and points discussed.

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