Sleeplessness.......Help!

Discussion in 'I care for a person with dementia' started by Jayjoe8985, Oct 31, 2018.

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  1. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Can someone please advise me how they've coped with caring for a loved one with Alzheimer's who does not sleep for more than 5, ( interrupted) hours per night.
    My mother, with severe Alzheimer's is up at least 20, (no exaggeration), times per night. We are dying on our feet with sleep deprivation. Mums meds have been changed lots of times and nothing seems to work.
    She's now on quetiapine 50mg with zopiclone 7.5 a few times per week - she's still up at 2.30am and will not settle back down
    What has worked for others? Was it's combination of drugs?
    Anyone found success with mirtazapine? Please help I'm exhausted.....
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi @Jayjoe8985
    sorry to say this is maybe one lf the most difficult situations for any carer - it's doubtful any medication will help your mum sleep through the night, and if that means you are disturbed so not sleeping, the knock-on effects just make the days harder
    in a care home, the residents who are awake in the night, and maybe wandering, can be looked after by the night staff, who do get to go home to sleep - I know in my dad's care home the staff are on hand to make toast and a warm drink, sit and chat, makes sure those who walk are safe .....
    so maybe it's time to check out the local care homes so your mum has 24 hour support and supervision, and you get to sleep and visit her as her daughter rather than an exhausted, fraught carer

    sorry this isn't the reply you wanted, and is just my opinion
     
  3. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,433
    Kent
    Sorry to say that dad was a night time pacer and I didn't find a solution to tgis phase. In the end I made the house at night as safe and secure as possible and whilst I didn't get much sleep stayed in bed and let him get on with it. He was though still able to negotiate the stairs safely even in the dark...I left a light on but invariably he turned it off. Day time I snatched a snooze when he did. This challenging behaviour and carer's sleep deprivation is sometimes the turning point for the need of a care home and was in dad's case.
     
  4. Midow

    Midow Registered User

    Jun 13, 2017
    38
    Wales
    My OH was prescribed Melatonin Special 2mg. It's the one that is fast acting, not slow release. A few months ago the pharmacy gave us non special and his sleeplessness increased. I don't know if they will work for everybody but could be worth a try. Hope this helps.
     
  5. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Aw thank you for your replies. I have tried melatonin MR and it unfortunately didn't work for mum atall, sigh.
    Imum goes in respite for two nights every two weeks which does give us a window to get 'some' sleep in. She's in a right state when she gets back from respite though because she's missed me so much. If I put mum in a home, she would die within weeks I'm sure, she's always, throughout her life begged me not to put her in a home. I just couldn't do it. (At this point anyway - there could possibly be a plan b).

    Can anyone advise me how long this 'wondering at night stage lasts? It's been going on now for 7 months.? As her Alzheimer's processes will she sleep more? Thanx for replies
     
  6. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,433
    Kent
    That is such a difficult question to answer as every pwd is so individual however sorry to say in my dad's case the nightime determined pacing became more slow wandering with snatches of sleep by then in his NH but it never stopped until sepsis and a tia intervened to bring about sudden end of life. I always felt with dad he would continue his compulsion to walk until he became immobile but although he slowed and shuffled didn't reach that stage. When I lived with dad after a particularly bad night of him being awake and pacing the house all night and coming to me 30 times...in the morning I asked him apart from getting up to go to the toilet what makes you walk at night and his answer summed the phase up to me...'I don't know I just need to walk'. So it was a compulsion to always think he needed to be somewhere else or have somewhere he needed to go...his childhood home for comfort with gis mum....work routine for years...who knows. This phase from start to end of life was over 3 years.
     
  7. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    I’m sorry to say that my OH who also has Alzheimer’s also never had more than three hours interrupted sleep a night. This was one of the facts that finally lead to him going into a CH as my own health was suffering as a result. That and the very real deterioration Of his Alzheimer’s which meant I was unable to care for him properly on my own at home. He still sleeps little at the home but as previously said the night staff care for him in the night and he just sits and chats with them until he falls asleep again in a chair. It was the hardest decision of my life to move him there but three months down the line I can see it was the best thing for him (and me) and we spend quality time together on my visits most days and I can be his loving wife again not his exhausted carer.
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,884
    Female
    Scotland
    Only when my husband began to take Trazodone afternoon and evening did he calm down and start to sleep through the night. He can now sleep ten or twelve hours only getting up when I wake him during the night for the toilet and then straight to sleep again.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Once mum started being awake during the night she never did stop. She lived for 3 yeas in her care home and didnt stop until she reached end of life. The night carers in her care home were lovely and used to chat to her, make her some toast and a cup of tea. There was always at least one person wandering around the lounge etc every night and the carers didnt mind at all.

    My mum used to beg me never to put her in a home too, but I could not keep her safe. I thought she would hate it, but actually she thrived there. I thought she would be dead within the year that she moved in, but she lived for another 3 years and although her last year was marked by constant health problems (UTIs, stroke, broken hip) she had 2 good years where she was content there.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    BTW, I think that going in for 2 night respite every 2 weeks is probably the worst of both worlds. I would expect that all that chopping and changing would be very upsetting and disorientating for your mum. She wont have a chance to settle before she is moved again and it also doesnt give you a chance to catch up on your sleep
     
  11. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
     
  12. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Thanks for ur reply canary, it such a worry. Mum is quite happy into he day time and if it wasn't for the sleeplessness we, (my husband and I) could cope. To be honest if she was in a home I feel I would have to be there every day anyway so it is maybe easier having her at home. But if this sleep issue isn't improved, plan b may be thought out. Thanks
     
  13. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Thanks for ur reply. Yes I understand that this sleeplessness is often the reason for care home admission. I can understand why but am desperate to at least improve these issues and so keep her at home with my husband and I. It's obvious mum is slipping daily and I would love to see it through to the end. I was hoping someone on here had been there till the end and had some experience with meds that worked for their loved ones. Thanks
     
  14. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Yes that sounds rather like my mum. In the night time she's in a different zone and repeats she needs to get to work or get the kids ready for school. Like a compulsive urge.b got to be some medication that can deal with this surely. Thanx
     
  15. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,433
    Kent
    The problem I encountered with possible medicating for dad was that the GP was concerned and I agreed was the possibility of risk of falls caused by the effect of the medication. Dad was able to move himself around the house relatively safely without risk and much as I wanted to find a solution wasn't prepared to put him at risk of falls on the stairs if medicating introduced a risk however small.
     
  16. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    I totally understand your reasoning but, surely if a medication works to stop getting out of bed 20 plus times a night the risks is fall will be reduced. Mums got an alarm on her bed and as soon as she moves I'm there before she has time to actually get out. If it was a few times per night I'm more than happy to do this, it's the constant up and downs for no reason. I'm hoping to alleviate. I'm going to dare ask for yet another medication change and fingers crossed. Horrible disease but id still be so happy if I could see mum through it. Thanks for ur reply.
     
  17. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,433
    Kent
    Dad was also agitated and could not be deterred from getting out of bed getting dressed yet again or persuaded back to bed so I understand why you would think medication would solve the problem but inbetween state of being dozy but still getting up was too risky we all felt however every person with dementia is different and you may feel it is worth a try with your mum if her GP agrees. Interestingly when dad moved into his NH they initially felt they could change his nightime wandering bit woth no stairs to negotiate they tried medication but with no success and as he was by then having falls and his medication increased that risk in pwd it was stopped. Dad was one determined strong willed pwd :rolleyes:
     
  18. Jayjoe8985

    Jayjoe8985 Registered User

    Sep 22, 2018
    15
    Is your dad still alive now? What state is he in now? Mum had two falls before she moved in with us, 7 months ago, breaking her hip once and her wrist the other time and I do worry the drugs make her more unsteady. I feel though her state of agitation is more cruel than a potential fall. Yes everyone is different and we don't always make the right decisions. Mums in a constant state of worry, so sad to watch. I feel useless. I'm sure they'd have her on meds if she was in a care home anyway, she's so restless.
     
  19. CWR

    CWR Registered User

    Mar 17, 2019
    36
    My mother asks when it's time for bed when she gets up, and when I came back from shopping, she was in bed. However, after putting her to bed she got up repeatedly.She has only been in bed for 3 hours and she has been up 10? more times.I am at my wits' end. She has never been like this before.At most 5 times but this is HELLISH. I have tried lemon balm but to no avail. Any suggestions?
     

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