‘Sleep’ is a thing of the past……..

I don’t ever remember a night where I didn’t wake up at some point but I always felt refreshed and felt as though I’d had enough sleep. I always use to read a chapter of my book and then as soon as my head hit the pillow I was fast asleep until 4 or 5 o’clock….I always use to have blocks of solid sleep……..
Not any more – another change since dementia has entered my life and something that appears to be getting worse. It can take me hours to get to sleep. It’s not even that my mind is working overtime. I’m relaxed, not restless….I’ve always been able to switch off and relax but now it’s as though I’ve closed my eyelids but my eyes are wide awake behind them even though the rest of me is tired. It’s bizarre…..If I sleep, I sleep for an hour or sometimes even less and then wake up. I have very vivid dreams because I’m sleeping so lightly. If this had happened sooner I would have put it down to a possible side effect of the trial drugs I’m taking but there doesn’t appear to be any correlation time wise – although I’ll obviously tell the team my sleep is getting worse when I see them next.

There is much literature on sleep deprivation and dementia but I havn’t been able to find the simple answer of ‘why’ or what I can do.
I’m physically active – my Fitbit tells me I’m doing far more than the recommended 10,000 steps a day. I’m mentally active as I’m so busy here there and everywhere. So why is sleep such an issue? Sometimes I grind to a halt through sheer exhaustion but then just plough on regardless.
I’ve tried relaxation methods of various sorts but this seems related to the dementia.

I’d love to be part of a trial looking at sleep and dementia but havn’t found one, so if anyone knows of anything please let me know.

I would love to sleep through the night – or even for several hours……If anyone has a magic remedy for sleeping through the night , please share with me……

Billy,of course, has no problem.......
Billy,of course, has no problem…….
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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

10 thoughts on “‘Sleep’ is a thing of the past……..

    1. Dear Wendy,

      With a bit of a delay, I’ve just published an article about your sleeping problems and the good outcomes you had from your friends’ and readers’ feedback.

      I’ve put together and translated into Italian a few paragraphs from the articles you wrote on May 26th (‘Sleep’ is a thing of the past…) and on May 31st (Sleep update highlights post code lottery). I’ve added a few comments of mine that basically say that you are certainly not the first person with dementia experiencing these issues and feels helpless about it. I also stressed the fact that your rich network of friends and readers shared not only solidarity but also sound practical advice. And I think the quick feedback you received is simply amazing.

      Here’s the link to the article published on my blog: http://novilunio.net/sonno-e-demenza-2/

      By the way, how are you sleeping these days? Have you had any more nightmares or changes in your sleep patterns?

      Thank you once again for the great job you’re doing with your blog. I read with much interest the last couple of articles about your suggestions for people newly diagnosed and for carers… I think they are really helpful and down to the point 🙂

      I wish you a great rest of the summer.
      All the best,

      Eloisa

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      1. Always so nice to hear from you Eloisa😊 Thank you for your kind words:) The nightmares disappeared the first night following the change in when I took the medication, which has been wonderful; However, sleep still eludes me. My sleep pattern is still sleep, wake, sleep, wake etc which is not so good but far more tolerable without the nightmares:)
        Hope you too have a wonderful summer!xx

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  1. Are you taking your dementia medication at night? I had the most vivid nightmares if I did that, and talked aloud in my sleep! The Dementia clinic suggested I take my meds in the morning and I found that worked really well. Best regards, Sylvia

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    1. Hello Sylvia – not sure if you’ll read this but your suggestion worked – thank you soooooo much. I can’t tell you what a relief it is to no longer have disturbing dreams each night. What part of the country are you in or are you outside the UK?

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