Sleep?…Remember me?

Sleep is becoming a major problem – or rather, the lack of it. Many people with dementia have sleep issues. Some sleep lots, other have bizarre dreams when asleep and some, like me, have problems sleeping at all.

I’ve been like this for a few years now but it’s now getting worse…

I remember in the distant past, reading a few pages of my book and then instantly falling asleep. Admittedly, I did wake early, but that was more due to having to be up at silly o’clock to get to work.

Now, even though I go to bed exhausted, I just don’t fall asleep. It’s as though my body has forgotten how. I’m relaxed, I’m not agitated in any way, yet sleep evades me.

My eyelids remember the process very well, but my eyeballs have forgotten what to do. Behind those tired eyelids, are very awake eyeballs😳 that just don’t seem to remember when to give in and drift off to the land of nod…….

During those periods when I am asleep, I have vivid dreams and often wake up not being able to decipher them from reality. But at least they’re not the alarming dreams I used to have when I took Donezepil at Night. It was only when someone on Twitter suggested I take it in the morning that those stopped (why didn’t I ask my Gp, I can hear you asking? Well I would, only he doesn’t think much to Donezepil, so it wouldn’t be worth asking him)

A few weeks ago I got a new fitbit as the one I’d had for years was being held together by glue. The new one seems more sensitive to recording your sleep pattern and clearly shows what restless nights I have….every night.

My worst night last week...
My worst night last week…ideally there are no light blue or red lines – just a block of dark blue loveliness…..

I’ve had other people of all ages wear the device to check that I’m not just like everyone else and their charts show nice clear slots of nothingness with the odd blue line every now and then – nothing like mine.

I recently saw information about some new research being carried out called DREAMS START (Dementia Related Manual for Sleep; Strategies for Relatives). I thought this was going to be my chance to take part in some research on sleep…….
The study states:
“Sleep problems are common in people living with dementia, with around 40% of people living with dementia experiencing sleep disturbance.”

Well, yes, I can confirm this, no problem, but imagine my disappointment when I was told the study was based at University College London and participants will need to be within a 5 mile radius of this site……..😔 They’d forgotten to add that last bit until I asked about it – talk about raising my hopes and then dashing them

I’ve trawled the net for possible solutions but I’ve tried or already do most of the non medication suggestions. I finish the MADE clinical trial this month. It will be interesting to see if those tablets have been exacerbating the problem….not that they’re monitoring the withdrawal affects, which seems remiss to me……am looking for another clinical trial, if anyone knows of a good one…….

I long for those nights in which you fall into a deep sleep and wake up feeling refreshed and ready for what the day throws at you😴…….I can but dream…..well no, I probably can’t……..🙄

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.

9 thoughts on “Sleep?…Remember me?

  1. That’s really interesting, Wendy. My mum experienced this and I hadn’t related it to her dementia. She’d always struggled to sleep, but it did become noticeably more of an issue. I would say “sleep well tonight,” but I know you probably won’t, so I won’t, but thank you for raising it and I hope you do get some rest, even if it’s not actual sleep. x

    Liked by 1 person

  2. Yes, very interesting.Sleep is often overlooked by health care folks. Disturbed sleep, disturbing dreams – maybe associated with some of the daytime struggles people with dementia have.

    Liked by 1 person

  3. I know somebody, a PWD, who had a problem a bit like this. In their case a small dose of an antidepressant before bed time worked wonders and seems to have had no bad side effects. So does a nap in the afternoon.

    In my case I find lavender oils etc help, but I also find that sleeping badly and sleeping well go in odd unpredictable and often long cycles.

    Anyway xxxxxx

    Liked by 1 person

    1. Thanks Sarah – well I’ve had over 2 yrs of it so me thinks it’s someone elses turn now-ha i quickly learnt how to simply close my eyes and relax-it doesn’t worry me, it would just be nice to sleep. I tried the tablets too. Sadly they didn’t work for me and I ‘lost’ the 2 days after. I too spray lavender on my pillow to relax.
      I hope you and Peter are ok and that 2017 is kind to you😘xx


  4. Hi Wendy
    sounds very frustrating and you must be exhausted. Do you think playing some low level relaxing classical music to fall asleep to and left playing in the background would help? My mum has dementia and background calm music always seems to help her drift off and stay sleeping. There are some great ‘playlists’ on youtube, etc and all kinds of great soothing sounds, just google ‘music to fall asleep to’.Worth a shot anyway.. Ali 🙂

    Liked by 1 person

  5. Sorry to read about your sleep problems, as someone who has insomnia on a regular basis and needs to take medication to fall asleep, I can relate

    Like you, I’ve also monitored my sleep (if I slept at all) but with a recorder, that monitored whether I would toss and move a lot. Results which eventually made me go to a sleeping centre for testing, (which is emotionally/mentally exhausting cause everything is put in the box of you having stress or being depressed). Sleeping centres which I do not suggest, unless you are mentally strong.

    I cannot relate how it is like when you live with dementia and what could possibly cause your sleep problems
    Too bad about UCL offering the clinical trial only in a certain distance…grrr
    I work at the same department of that study, and will check if there are other possibilities to join.

    Liked by 1 person

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