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Fibromyalgia Action UK
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Not a question just a , I don't know what

I have a long day today and need to be up earlier than usual, so need my sleep so why do i wake up 6 times in the night. Wake up decide I am thirsty so have some water and then need to get up to go to the loo and now I am ready an hour before I need to leave.

So decide to check my emails and get awful one from my sister regarding my parents. My Mum has dementia and is in a home. and wants a divorce from our father. been married 65 years so he is very upset.

11 Replies

Morning Jack,

My night was much the same and wow it does seem such a long night and so tiring.

Sorry about your Sisters news. You have to remember with Dementia what she says one day can be completely different the next. The previous desire completely forgotten. I know that doesnot help much but when my Aunt no longer knows who we are I have to rationalise it somehow.

Take care



Hi Jac :)

Sorry you were plagued with the 'I have to get up tomorrow so I'd better wake up every hour' problem, it's so annoying isn't it? I'm also sorry about the news from your sister, Gins is right your mum may not recall such conversation tomorrow, I only have a little experience with dementia.

My Great aunt used to call my mum nurse and she saw her every week a lot, but she called me sian and saw me once a year, maybe twice because I lived so far away, I used to write and send postcards to her. My mum would get quite upset as she was the only one who really bothered with her and her care as she was the eldest sibling, my GA didn't have children. It was difficult to reassure my mum because to her she felt unrecognised but she was recognised just not as her niece but as the niece that cared ie: nurse because she was there all the time especially toward the end and blended in like the staff :)

Wishing you wellness, take care :)

:) xxxsianxxx :)


Hi JacHK, sorry about your news. I worked with a girl and her dad had dementia, it is hard to comprehend what is in their heads. My friend was telling me that her dad would ring her in the middle of the night and ask her where the telephone was because he wanted to ring her and couldn't find it, what do you say? Another time he asked her to fetch her mother to bring him some tea, her mum had died 5 years previously. So she decided to get him some tea and say nothing, brought it in, he didn't recognise her and thought it was his wife :) Go with the flow is all I can suggest as the previous posts say she will most likely have forgotten she said it.

As for your bad night you have my sympathy. I have nights like that, or waken up wide awake and can't get back over until it is about an hour before getting up for work time :)

Hope all works out for you and you can rest up later... Susan :)


thanks for all the support. Dad is now phoning the home and finding out what mood mum is in before he goes to visit her. He is 89 this year and the visits are taking it out of him physically and emotionally. Every so often he says things like I don't think she is going to get better and be able to come home - no. The last month she was home they were phoning 999 several times a week and the ambulance service were getting 'annoyed'.

Anyway have been to the airport and collected my son who has gone straight to bed as he been travelling for 14 hours but will catch up with his news later.


Gentle hugs. My mum had dementia and said things like that to dad. She said it and forgot it a few moments later. It's upsetting though and I fell for you all. Having a parent with dementia is just so emotionally painful.




Dementia is cruel and robs sufferers and their families of who they are. My 92yr old mum is in a home but 400 miles away so I only see her rarely, but fortunately my sisters are near enough to visit a lot. She has very little sight or hearing and doesn't know anyone but my dad who visits her every day. She used to talk nonsense but now rarely speaks. Thankfully she is happy and loved by the others in the home, which is a great comfort to me.

Sorry you were upset by your sister's email and for your dad. It seems very sensible that he phones to see how she is before going in. Hopefully by now she will have forgotten what she has said.

Hope you have a better night tonight. xxx


thanks all. just spoken to dad and he had a reasonable visit today. hopefully he will continue to phone before he goes over. mum is not so nasty to non family she seems to know that if she is nasty to friends then they will cease to visit. Of course she no longer remembers that she refused to visit any one in a similar condition as she found it upsetting.

What I have not said is that she has always be abusive long before the dementia started. I think when you are a child you do not know what is normal behaviour and my childhood was not 'normal'.


Hi JacHK

I sincerely hope that you are feeling as well as you possibly can be today? I have read your post with a great deal of pain and sorrow for what you are trying to deal with! I really understand that this must be exceptionally difficult for you and all of your family.

I genuinely hope that you can manage to get a really good nights sleep tonight and I genuinely hope that both yourself and your parents are not suffering too much emotionally.

All my hopes and dreams for you

Ken x


Morning Ken

Had a great night sleep thank you. Think last night I was feeling guilty for being here in Malta rather than home looking after parents, but I have more health problems than fibro as I have lymphodema like my mother and I do not want to end up like her.

So as my sister has said I am now a selfish bitch but if that thinks I looking after myself then I am proud of that label.


Dementia is so cruel. Not just fro the "sufferer" who sometimes seems to suffer less than relatives. I used to work in a care home and was forever escorting naked ladies back to their rooms. We have a lovely lady locally who organises free courses (2 afternoons) for relatives to help prepare them for what's to come. Your mum may well not remember. It can be hard but the best way is to try not to argue, and prepare for outbursts, even of violence. Staff get assaulted regularly but I don't recall a complaint ever. So do families, as you and Zeb said, they have different memory mechanisms, there's no logic to speech or actions. I'm sorry your sister seems so negative, I wonder if she's stressed and so becomes irrational. Yes you do have plenty to cope with. Try to reassure dad that the real mum who's still in there somewhere, DOES NOT mean that. Don't say "would not mean it" that implies she's gone away. All dementia has other symptoms than purely memory: it exaggerates other behaviours and does the "second childhood" bit, as well as violence and argument. Alzheimer's society alzheimers.org.uk/ has loads of information for relatives and most of the volunteers I work with have a relative with dementia. If you as a family get this sorted rationally then hopefully you will be able to use necessary energy for your own problems. Stress will only make things worse and you can't help mum and dad if you're terribly ill.

As to sleep, sorry, but who knows. Stress is a factor and looks like you have plenty. I haven't had a full night for ages- I think I get 6 a year but I do get REM sleep some nights so I'm not so bad. Even so I was up 4 times last night and Saturday at 2 am I did my laundry and cooked lunch - hey electricity was cheaper as I'm on economy 7 so it's a slight advantage / mixed blessing :P

Do also try the "Making Space" group on Health Unlocked. It's set up like this one but nowhere near as active.

Please feel you can come back for help on the dementia as well as fibro suggestions or simply a moan anytime.

I take it mum, dad and sister are back in dear old blighty?

Hope that helps, gentle hugs and moral support :)


hi Fenbadger

dementia is very cruel and Mum's was not helped by her inactivity when she was younger, can never remember her going for a walk, and since dad retired she has been sitting in a chair shouting at him for this and that.

The other thing is that she has been abusive mentally for as long as my sister and i can remember and sure she has not had dementia for 60+ years. This makes it very hard to be compassionate, and I think I feel guilty for not feeling guilty - screwed up for what. When I became pregnant with my eldest she put extreme pressure on me to have an abortion, not so odd you may think until I tell you i was 29 and married with my own home and a steady income. i had an ex tell me once years later than my mother was so horrible to him and he decided i was not worth getting involved with. He was no lost, she was also horrible to my husband but he decided I was worth it ;-)

So when I say I do not want to end up like my Mum I really mean it and realised that the pain with Fibro meant I was not moving as much as my body needed to and I have to live my life differently. Mum was always going to the doctors getting stronger and stronger pills and when the hospital said that was all they could do decided to move to where I feel good and it is working but just need to get rid of the guilt and my sister's anger that she feels that I have left her holding the can.

Anyway it is a lovely morning in Malta and I am sat on the balcony with a good cup of coffee and watching the market, already been round myself they start early here. So after a angst message I am leaving with a smile on my face so thank you. Putting it down is therapy.


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