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URGENT! Need help sleeping - Carers UK Forum

URGENT! Need help sleeping

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So my Nan needs help sleeping she is on medication for different things but the most recent one to help her sleep is melatonin. (Just a note of her health issues; Alzheimer's, COPD, Asthma, diabetes, cataracts in both eyes) Even though she is on medication to help her sleep she still isn't sleeping well, she sleeps in a room with my Mom and they go to bed at half ten on a night although my Nan doesn't go to sleep straight away. Trying to get her to bed is also a fight as she refuses to go so we have to go through a whole persuasive conversation.

She wakes up between three and five on a morning and its killing my Mom as she has to get up with her. We have tried to get her back into bed but she won't she refuses. Sometimes she will stay awake all day until she goes to bed at half ten the next night but still wake up between three and five. Other times she will go to sleep on the sofa as soon as she gets downstairs.

My Mom is more tired then i am as she sleeps in the same room as her so she gets disturbed on a night more then i do. She is worn out with it all and has really had enough with not getting a good nights sleep. Could anyone give me some advice? Should there be something we should be doing that we are not? Should she be on different medication? Would really appreciate any help.
Hi, from what I have learnt on here sleep problems in dementia sufferers is common. Others will be along with personal experiences of trying to cope with this. Just check though her melatonin, is it the slow release form, if not, it's worth asking the GP for a change in the type prescribed as she may be on the form that is intended to aid falling asleep rather than staying asleep.

Melly1

PS sleep deprivation is the pits, not enough sleep really affects the ability to cope, so good luck. ( My caree has periods of poor sleep - & currently isn't sleeping much - so I do understand.)
Hi Stacey

You don't say how long Nan has been taking melatonin, but it might take a couple of weeks to kick in effectively. Unfortunately the older we get the less sleep we seem to need - I'm 70 and wake regularly during the night - go to bed about 1030/1100 and then wake at regular 2 hourly intervals until it's time to get up at about 7.30 !

Do your Mum and Nan have to share a room ? Nan might do better going to bed a bit later, especially if she has been sleeping on and off during the day. When she wakes and gets up so early what does she want to do ? Is she waking because she wants the toilet or maybe because she wants a drink ?

Not needing much sleep also seems to be a regular thing with Alzheimer's - it's often known as "sundowning" and is connected to the 'body clock' not working as it should. They can't seem to differentiate between daytime and night time.

It might help to ensure that the room Nan is in during the evening is brightly lit and that the room she sleeps in is as dark as possible - so that going from a brightly lit environment to a dark one is a 'clue' for her that it is night time and, therefore, time for sleep.

Melatonin is a 'gentle' sleep aid so if that fails it may be necessary for her GP to prescribe something stronger.
Melly1 wrote:Hi, from what I have learnt on here sleep problems in dementia sufferers is common. Others will be along with personal experiences of trying to cope with this. Just check though her melatonin, is it the slow release form, if not, it's worth asking the GP for a change in the type prescribed as she may be on the form that is intended to aid falling asleep rather than staying asleep.

Melly1

PS sleep deprivation is the pits, not enough sleep really affects the ability to cope, so good luck. ( My caree has periods of poor sleep - & currently isn't sleeping much - so I do understand.)
Hello Melly1

Yes it is slow release melatonin the docotor said that would be best to suit her needs.
susieq wrote:Hi Stacey

You don't say how long Nan has been taking melatonin, but it might take a couple of weeks to kick in effectively. Unfortunately the older we get the less sleep we seem to need - I'm 70 and wake regularly during the night - go to bed about 1030/1100 and then wake at regular 2 hourly intervals until it's time to get up at about 7.30 !

Do your Mum and Nan have to share a room ? Nan might do better going to bed a bit later, especially if she has been sleeping on and off during the day. When she wakes and gets up so early what does she want to do ? Is she waking because she wants the toilet or maybe because she wants a drink ?

Not needing much sleep also seems to be a regular thing with Alzheimer's - it's often known as "sundowning" and is connected to the 'body clock' not working as it should. They can't seem to differentiate between daytime and night time.

It might help to ensure that the room Nan is in during the evening is brightly lit and that the room she sleeps in is as dark as possible - so that going from a brightly lit environment to a dark one is a 'clue' for her that it is night time and, therefore, time for sleep.

Melatonin is a 'gentle' sleep aid so if that fails it may be necessary for her GP to prescribe something stronger.
Hello Susieq

Nan has been on melatonin for about 2-3 weeks now. And yes they do need to share a room as Nan wouldn't go to bed at all if they didn't plus she is quite unsteady on her feet. So with Mom being in the same room as her as soon as she Sits up in bed Mom is awake and there to sort her.

It depends on her really what she does when she is up early sometimes she will just sit there other times she won't keep still and is into everything it's like she has all the energy in the world and doesn't stop talking.

She is double incontinent and has to ware pads when she wakes up Mom always checks her and she is fine most of the time. Mom has tried leaving a drink by her bed but it doesn't make any difference. On a night before she goes to bed she is in a lightly lit room we have a ceiling light with five lightshades on so its pretty bright. She then goes to bed the light is on but as soon as my Mom gets my Nan into bed she turns the light off so Nan can go to sleep.
Stacey, are you sure the time has not arrived for your nan to be in a care home? She sounds like she's gone way, way beyond being 'carable' by only one person (ie, your poor mum!). In a care home they have teams of carers, doing night shifts and so on, and so are not affected by restlessness. That's the situation for my MIL now, she is very, very restless at night, wanders around, wants food, etc etc. She always was a bad sleeper, and now its dreadful. However, she dozes most of the days!

She, too, has reached the incontinence stage, and to be blunt, the vry idea of me coping with that aspect would send me screaming!

I do think you have described your nan as now being in need of a care home. I know your mum is doing her best, but she can't be awake all night like that - it will break her.

As your mum's daughter, do have a word with her, and say that you want Nan to go into a home now, for the last section of her life. I doubt your nan will really 'know' what is happening, and the only barrier will be your mum's 'guilt' that she's 'put her mother in home'! Maybe you could tell your mum that the one thing YOU are leaning is that if she ends up like your nan, you will most definitely be putting her in a home! That might make her realise that it's completely 'unfair' for her to be the sole carer for her own mother. It can't be done when they get that poorly.

Have you any brothers/sisters/dad, etc etc to support you in your 'campaign' to get your nan into a care home where she can be looked after properly, 24x7? Don't expect your mum to 'agree' - her guilt will trump her exhaustion. You have to do this FOR YOUR MUM now - she needs your help to 'free' her now.
jenny lucas wrote:Stacey, are you sure the time has not arrived for your nan to be in a care home? She sounds like she's gone way, way beyond being 'carable' by only one person (ie, your poor mum!). In a care home they have teams of carers, doing night shifts and so on, and so are not affected by restlessness. That's the situation for my MIL now, she is very, very restless at night, wanders around, wants food, etc etc. She always was a bad sleeper, and now its dreadful. However, she dozes most of the days!

She, too, has reached the incontinence stage, and to be blunt, the vry idea of me coping with that aspect would send me screaming!

I do think you have described your nan as now being in need of a care home. I know your mum is doing her best, but she can't be awake all night like that - it will break her.

As your mum's daughter, do have a word with her, and say that you want Nan to go into a home now, for the last section of her life. I doubt your nan will really 'know' what is happening, and the only barrier will be your mum's 'guilt' that she's 'put her mother in home'! Maybe you could tell your mum that the one thing YOU are leaning is that if she ends up like your nan, you will most definitely be putting her in a home! That might make her realise that it's completely 'unfair' for her to be the sole carer for her own mother. It can't be done when they get that poorly.

Have you any brothers/sisters/dad, etc etc to support you in your 'campaign' to get your nan into a care home where she can be looked after properly, 24x7? Don't expect your mum to 'agree' - her guilt will trump her exhaustion. You have to do this FOR YOUR MUM now - she needs your help to 'free' her now.
Hi Jenny

I help out as much as i can with Nan's care I don't go out the house very much partly because of helping with Nan and partly because I suffer from anxiety and depression. My brother also helps out by sorting medication and taking her to hospital appointments ect. My uncle comes over every morning to do the house work and he does Nan some breakfast.

The thing is me and my Mom don't want Nan put in a home even though it is very hard as we made a promise to Nan when she first got ill she asked us not to and we agreed. There is going to be a bit extra help before long she will be going to a day centre every Saturday between 9am and 3pm. Then once two more days become available she can go then also.

See this isn't the first time we have cared for someone my Dad was diagnosed with cancer when I was 12 years old (I am now 22 years old) it was a difficult recovery as he caught a hospital bug after his operation and was in hospital for a while. Then when he came home he needed help to get better. He also had ajust to the new diet as he needed his stomach removed as it was full of cancer. So we all cared for him. Then after a few years the cancer came back and this time it was terminal we cared for him right up until the day he died when I was 15 years old.

Then we took care of my Dads elderly Aunt and Uncle as we were the only family they had my aunt had her own battle with cancer and my uncle had two battles with cancer. So we do have quite a lot of experience with caring for people but its just hard caring for someone with Alzheimer's when they are always on the go, it is hard to get them to understand things, their sleeping pattern is mad and the aggression. Its difficult we are finding it hard but we don't want to put her in a home.
Stacey, I appreciate you don't want to put your nan in a home. I didn't want to put my MIL in a home. No one 'wants' to put a close relative in a home....but this now is a question of what your nan 'needs'.

Dementia/Alzheimers is different from caring for someone with a physical disease. I nursed my husband through terminal cancer, and I know, bitterly, how dreadful dreadful dreadful it is to watch someone you love die slowly in front of your eyes - my son was your age when he lost his dad, and no one that young as you and he should have to endure that.

But dementia is different - you know that from the impact it's having on your mum, and all of you.

You, as a young woman, have been through SO much, and personally, I think it is Absolutely the right thing for your mum now to put YOU first - NOT her mother!

The one thing I was utterly and totally determined on, when my MIL was diagnosed with dementia three years ago was that my son would NEVER have to have ANYTHIGN to do with looking after her! He'd lost his dad during his schooldays, I wanted his college life, and now his professional life, to be completely FREE of any more caring, let alone for someone who, and this is a grim thing to say, but a true one, someone who 'should' not be alive any more because they have gone way, way beyond 'themselves'. Your nan is not the person she once was, and she should never, ever, have made your mum promise not to put her in a home - none of us should EVER demand that of our children! Your mum should never demand it of you, and certainly I should never demand it of my son!

The important person now is YOU - I say that completely and totally from the heart. Your mum should make YOU more important to her than her own mother.

That means her mum, your nan, should now be in a home where her aggression and restlessness can be managed by caring professionals. The carers in my MIL's home are lovely - very kind and sweet, and when I visit my MIL and take her out, she is fine.

In care homes they know how to minimise the difficult behaviour of someone with dementia, they have vast experience, and most important of all, teams of people - not just frazzled and tired relatives.

Ask your mum whether she wants YOU to go through with HER what SHE is going through with her own mother! Ask her whether she would want to put YOU through what she is going through. I cannot for a single moment believe she would want you to have to endure what she is enduring, just so that she can stay out of a home.

As the dementia worsens your nan will not know where she is. My MIL has no idea where she is any more. She is glad to see me, then forgets I exist as I walk away, has no memory of my last visit, no 'awareness' of her surroundings.

We, the carers, agonise so much more than the caree does!

For your mum's sake, I think your nan should be in a home. But it will probably take your mum doing it for YOUR sake to make it happen!

Please don't let your mother go through any more of this. Get the whole family to agree that Nan has to go into a care home, and insist on it.

That's my view, and I feel that very strongly.

Kindest wishes, Jenny
My goodness Stacie,
While I think both you and Mum would qualify for sainthood, WHEN are either of you going to enjoy a care free life of your own? You are both worn out and if you don't think you are, well you should be.
Who are you benefitting by keeping Nan at home? Not your Mum who will collapse in the end and then who looks after her and Nan? Not Nan who may have already forgotten 'the promise' and may well get to the stage where she has no idea who you are or where she is. (Horrid disease.) Certainly not you who are already suffering with your own health problems.
I agree with everything Jenny has said and I applaud the fact that you and Mum have been so dedicated in looking after the members of your family who have suffered terminal illnesses. I don't think I could have done it.
Dementia is different though. Very different and the sufferer has, in the end, no appreciation of the love and care given them by the people who love them. Please ask yourself and Mum whether a promise like that is so sacred that your Mum's health and yours could be irretrievably compromised when Nan won't, in the end, know the difference or be able to care either way?
Was Nan such a selfish woman that she would want that for her daughter or grandchild or was she perhaps, just an elderly lady who was a bit scared of getting older and thought that a Home was the same as an old Workhouse? I think that very often when our aging parents ask not to be sent to a Home, what they are really saying is 'Don't let me get old and die' No-one can promise that and expect to keep the promise.
Wishing you all the very best
E.
Hello Stacie
Alas, some promises cannot be kept. My husband and myself " promised each other we wouldn't " put" the other in a home. It's a promise I couldn't keep. My lovely husband has vascular dementia and suffered strokes. I very very sadly cannot care for him at home. It doesn't mean I don't love him. I do, very much, and want the best for Him. His NEEDS are paramount, not what I want. It's not a case of ' putting' loved ones in a home. It's a case of doing the best thing for all concerned. It doesn't come without guilt, heartbreak and feelings of bereavement. However time spent with him is quality time now. Not without moments of course, that's the nature of dementia.
You and your mum are absolute angels. If you ever decide your nan needs to be cared for in a home, you won't be ' putting' her there, you will be doing the best for her needs.
This is my take on a very sad situation, and have utmost respect for what ever you decide.