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…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……..🙄