• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

so tired

chip

Registered User
Jul 19, 2005
400
Scotland
I am so tired my husband is now going to bed at 22.00 then getting up at 12ish then again at 01ish again at 2ish and 3ish then wants up for good at 06.00. I still only get 10hrs direct payments as the Independant living fund will not kick in for another 5 weeks. I only had respite 2 weeks ago. I have informed the hospital about it but i have got new medication to give him but i've to give him it at 8 in the morning starting tomorrow. He is now talking all the time not making sence. He does this at night as well. I need sleep. I also have to cope with this on my own. Sorry all i'm just exhausted and dont know how i will get through another night.
 

mocha

Registered User
Feb 17, 2006
176
85
Lancs, England
Sleepless Nights

Dear Chip,
You sound exactly how I was when my Husband was at home. Every two hrs without fail he would have me up. We had separate rooms so I had a sensor on my door that told me he was there. I could have thrown it through the window [and me after it!!!!]
I'm afraid it was the breaking point for me because I would have been in care myself if the NH hadn't come along.
We weren't offered any medication for it.
I'm afraid I can only offer sympathy
Bye Aileen
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
It is horrendous if you cannot get sleep - I went through this a couple of years ago and thank God it has sorted itself out for the moment. Does your husband not sleep at all - not even during the day. I found a solution in having a nap after evening meal whilst he was just sitting beside me. It worked for a while.

Otherwise I can only offer sympathy. Maybe at worst you have to see your own GP to let him/her know that you are suffering - you may then get more support.

Hope it soon sorts out for you. (It HAS to). Best wishes Beckyjan
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Chip

You have my sympathy. John is up every couple of hours during the night too. I'm constantly exhausted.

He insists on going to bed at 8 o'clock, because he's tired. He then comes downstairs at frequent intervals to see what I'm doing!

I think Jan's right, you should see your GP and see if he can organise more help for you.

Love,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Hi Chip, For what it`s worth, you have my deepest sympathy.

My husband sleeps all night. He doesn`t go to bed till 12, but at least sleeps right through till 7 or 8. He never naps during the day.

It is exhausting enough just coping with him all day, asking questions, getting more and more confused, having `sundowning` periods late afternoon and early evening. If he kept me awake at night too, I`d definitely insist on something to make him sleep.

Just one more night Chip, and then you`ll have the new medication. Even so, you need more help than you`re getting. Your GP should be made aware of the stress you`re under.

I hope it works. Love Sylvia x
 

alfjess

Registered User
Jul 10, 2006
1,213
south lanarkshire
Hi Chip

Sorry you are having problems. I thought I had problems but It seems that carers of early onset, have it really hard.

Sorry have no suggestions to help you, other than earplugs (don't mean any offense)

I have learned to turn of with Mum who constantly talks, just give acknowledgements as in Oh yes, Really, Is that so, Imagine that etc.

Maybe not the recommended thing to do for a carer, but it helps me cope

Alfjess
 

chip

Registered User
Jul 19, 2005
400
Scotland
Hi all, well medication given to him this morning. What do it do ? totaly zonked him he couldnt speak he was unbalanced he was starring his eyes were shut but he wasnt asleep and he was trying to walk about and wouldn't sit. I phoned the hospital and he is off them as well now. After 2hrs he went back to his normal self. They are going to discuss it tomorrow and are talking about taking him into hospital to see what they can give him as they cant get his meds right. He slept more last night so i feel a bit better today. Will see what happens tonight.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Chip

Glad you managed to get more sleep last night.

It doesn't sound as if they've got the medication right yet. Perhaps a stay in hospital for assessment would be a good idea. I would also give you a rest!

Lets hope you get a good night tonight.

Love,
 

chip

Registered User
Jul 19, 2005
400
Scotland
Another bad night he was up at 2am then 4am but at 4 that was him up for the day i'm exhausted but he doesnt seem tired at all.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Hi Chip,,

How you`re coping without sleep I can only guess. I agree with Hazel, a stay in hospital to get his medication sorted sounds the only way to solve the problem.
You can`t go on like this.

I hope you get a better night tonight.

With love
 

Margarita

Registered User
Feb 17, 2006
10,824
london
I must admit when in early days of mum AZ she sounds like how your husband was and they gave her sleeping tablets and anti depression tablets and that still did not help . she was up all night of on , then awake all day , they finally sorted out medication when they gave her Exbiza medication and stop the Ani depression tablets .

I don’t know how I cope in those days with lack of sleep and I was working fulltime, but I just did. I use to nap at work in my lunch hour, my sleep Patten was all over the place. I had no respite back then because I was not in anyone government system properly with mum, because mum got diagnosed with AZ in Gibraltar and I had to bring her back to UK , by that time the medication was working so she was just waking up early at around 6am as she still does now , and its me that left with still waking up around 3am and can’t sleep for around an hour . while mum is asleep as long as she has the TV on in the room she is sleeping ..
 

chip

Registered User
Jul 19, 2005
400
Scotland
I t was discussed on friday at the day hospital without me. They aren't taking him in. To try quintapine but to give him at 18.00. Bet it wears of in 3hrs well will see tonight. They seem not to be bothered about me. I've booked him into respite for two nights next weekend taking him for 10.30 on Saturday have the whole day and night after that to myself and Sunday night can't wait.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Just a thought you said that that your husband went to respite 2 weeks ago. I know when my mother come back her sleep Patten gets disrupted for a week or so . so am wondering just letting you know that maybe each time you sent your husband to respite to recognize that why his sleep Patten could be worse .

I know with my mother I need a respite because I am extra stress out with a move , my mother got back from respite few weeks ago and SW ask if I would like another one as I have some weeks left . I told her No because I know my mother needs to settle down in our new home , as I know if I send her now she is going to come back more unsettle and confused so am going to give it a few mouths before sending her .

Now I am just sharing my story we all do what we feel best for us , but just wanted to point out so you recognize what may happen to your husband sleep Patten even if medication is working by then
 
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Grannie G

Volunteer Moderator
Apr 3, 2006
70,405
Kent
Hi Chip,
When your husband goes into respite next weekend, will you ask them to make a record of his sleeping pattern.
It might be helpful.
 

pashandjas

Registered User
Aug 26, 2006
14
chip

chip said:
Hi all, well medication given to him this morning. What do it do ? totaly zonked him he couldnt speak he was unbalanced he was starring his eyes were shut but he wasnt asleep and he was trying to walk about and wouldn't sit. I phoned the hospital and he is off them as well now. After 2hrs he went back to his normal self. They are going to discuss it tomorrow and are talking about taking him into hospital to see what they can give him as they cant get his meds right. He slept more last night so i feel a bit better today. Will see what happens tonight.
i too had this problem seen dr was given medication it was trial and error at first result was trasedone at6pm quetepine +sleeping pill before going to bed it takes time to get into routine but persaverence worked . i seep in spare bedroom it gives me time for relaxing hope you find some relief pashandjas
 

chip

Registered User
Jul 19, 2005
400
Scotland
Got sleep again last night. Not sure if it was the quitipine or him just very tired. Fingers crossed tonight. He is also a lot better today and so am i.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Chip

Great news. It's amazing how much better we feel after a good night's sleep. Hope it continues.

Love,