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dealing with lack of sleep - Carers UK Forum

dealing with lack of sleep

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Hi everyone.
New to the site but there must be lots of you struggling with the same problem, lack of sleep.
I care for my husband and have done for 22years, we are both 68 and my husband has advanced MS. He is fed by a PEG, has a colostomy, supra pubic catheter and intrathecal pump to control spasm. He has no use of his legs or hands and limited use of arm movement helped by botox injections to relax them down to his chest instead of under his chin. He is entirely dependant on carers who do the morning and evening get up and put to bed, the other 22hours are covered by myself. Unfortuatly he has no concept of time, he has poor eyesight and speech but calls constantly to get up or go to bed, not neccesarily in relation to the time of day. That means that he wants to get up at any hour of the night and cannot understand that it might be unreasonable. Lack of sleep renders me grumpy and dopey! He goes into regular respite and the nursing home are currently trying to get his nightime medication to a level where he sleeps the night but is not too 'out of it' during the day. I cannot explain to him that i need my sleep to cope during the day as his brain is affected by his MS. We only have a small bungalow so there is nowhere to sleep where i cannot hear him and in any case i would worry that he actually 'needed' help. Any ideas out there please?
K
Hi Falpal and welcome to the forum.

Can't offer any relevant advice as although my Mum has Alzheimer's she generally sleeps well through the night. Have you thought about having night time care workers in - maybe once or twice a week so that you can get a proper night's sleep ?
Hi,Welcome to the forum,
I was a carer for my mum for many years, she passed away recently , I'm afraid I was the same as
you I rarely got any sleep. Two hours here, etc. everybody on here will probably be the same
I'm sure. It has a very big effect on you, not sleeping. I got that I could not even think straight in the
end.
Is there any kind friend or neighbour who would come in and give you a couple of hours break? maybe have a nap on their sofa , something like that. If not. I found listening to music helped me
focus. take care Image
Minnie
Hi falpal and welcome Image
My oh has ms too, but he also has fatigue with his, so he tends to sleep a lot, but in snatches.
Hi there flapal1

Lack of sleep renders me grumpy and dopey![quote][/quote]

What happened to the other 5 dwarfs ? sick sense of humour i know but i bet your smiling a little now ?

As for your care role- you are a star, a whizz with technology and mostly because you have to be. Im sure your husband gets nothing but the best care and support. Those individual pieces of equipment you have to use, are taught to nurses in hospital who are geared up to use them with a good support background. They have 3 years training minmum, i bet you only had a few precious minutes to learn.

I applaud you and the care you give- Magnificent

My name is Mandy and i was one of those nurses Image
hi falpal i look after my wife owe as ms and terminal emphersime she also as a superpubic caferta if you want a chat send me a private message (pm) or put a message on here and i will get back to you Image
Hi everyone

Thank you all for your replies. Much as expected there is no real answer but it was good to share and to recieve support. The district nurses are very good and would get a night sitter for me at the drop of a hat. Problem is the bungalow is a 70's build with stud walls so although i would not have to get out of bed and go into John i would hear him even with headphones on.When i get really desparate i dream of a sound proof room...in reality it would not work because i would feel the need to check that he was ok, no pleasing some folk eh? Not being negative but stating facts and i do have regular respite so know they will arise. I still have a good sense of humour and a good circle of friends and i make the most of the afternoons when John has his rest and listens to his music, he is safe in bed with the cot sides up and thats 'my' time, no sleep though because he continues to call day or night, like a stuck record, our doc says it is the ms touching his brain. Boy when he got MS he got the lot and no remissions, hey ho. I tell him he does it and he says he won't do it again but really he has no knowledge of it. He too has a sense of humour if rather childlike but it is a life saver to share laughter. As my hearing is not as good as it was and his speech is poor and like a whisper there are some interesting conversations in this house: I am also part of an MS carers group, great bunch of like minded people where you can say what you like and not be judged and give each other mutal support.
Thanks again
Kay

PS to Mandy, yes i was smiling at the reference to the 7 dwarfs.
Hi Kay

I was interested re the MS Carers Group and you have me looking this morning to see if there is one for Epilepsy Too Image Image Image
Thanks for that- Mandy
Boy when he got MS he got the lot and no remissions, hey ho.
Snap Image
Hi Mandy

Quite how our MS carers group came about i have no idea but it has been up and running for years, i think it was a fellow carer who started in off his own bat, jolly good it is too. They also meet up for lunches and chats with tea and cake but that would be a bit cruel to take John who has been 'nil by mouth' for 8 years. It takes someone with the vision to start a group up, i am happy to go along and exchange views but not to be the one to organise it. Hope you find somewhere that suits your needs.

K