1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. placey

    placey Registered User

    Sep 3, 2012
    51
    My MIL has late stage dementia but is still cared for at home. Her body clock has gone awry. She is up and down out of bed till the small hours and often awake most of the night. She doesn't make up for this is the daytime but walks around fiddling with things all day. She has a sleeping pill and the Dr has prescribed Melatonin. Has anyone experienced this problem, and has melatonin helped? Has anything else helped?
    Thanks guys!
    Placey
     
  2. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Hi there, my mum regularly stays awake all night and wants to wander around refusing to even sit down. Sometimes this continues all day too. After 48 hours she will sleep day and night and it is impossible to rouse her. After trying to care for her at home I had to surrender and she now lives in a care home. The GP will not prescribe sleeping tablets as she is also at risk of falling as to add to her Alzheimer's she is blind. We haven't found any solution or even anything to slightly improve the situation. The liaison nurse from the memory clinic suggests trying to re-establish a sleeping pattern....no idea how she expects this to happen. No matter how much we try to stimulate her during the day or follow a routine if she is in "sleep mode" or disconnected there is no way that you can keep her engaged with life. I think I have read on the forum others that have been prescribed melatonin so hopefully they will be able to share their experiences. xxx
     
  3. chickenlady

    chickenlady Registered User

    Feb 28, 2016
    94
    Have you tried a hot bath a hot drink with a small tipple in it followed by bed in a very warm bed, ie. with a wheat bag or extra warm duvet. Hopefully the melatonin will help when it gets started. Good luck.
     
  4. yak55

    yak55 Registered User

    Jun 15, 2015
    614
    Mum had the recommended course of Melatonin and I'm sorry to say it didn't work. Nothing works for my poor Mum and like your MIL she doesn't make up for it in the day consequently her poor ankles and calves are swollen and are checked regularly by the nurse.
     
  5. myss

    myss Registered User

    Jan 14, 2018
    336
    That's more or less my dad up until about a month ago. He's also diabetic and has swollen ankles so there's more of a need for him to put his feet up but he's not having it. I thought that it was down to being restless and having little to do apart from watch TV and read newspapers. We've tried with various activities and so no, but none of them was of interest or was something he was capable of handling.
    My dad gets incredibly moody when he's hungry and/or tired and when all the verbal direction has had no effect, I have twice used a small tipple with coffee to get him to have the rest he so surely needed. I must admit it worked well but don't want to rely on it too much in case he gets too used to it!
     
  6. placey

    placey Registered User

    Sep 3, 2012
    51
    Thanks to all who replied. It's lovely to know people are out there listening.
    MIL signed the pledge at a young age and been TT ever since so have to take off the tipple as an option! I'll have it instead! However I would like to report that the melatonin does seem to be working and mum has had much better nights, on the whole, since she started taking it. Best wishes to you all and thanks again.
    Placey
     
  7. chickenlady

    chickenlady Registered User

    Feb 28, 2016
    94
    Does it matter if they get hooked on a night time tipple? Not really.
     
  8. Prudencecat

    Prudencecat Registered User

    Dec 21, 2018
    25
    No answers but you aren't alone. My mum has just completed her fourth night with very little sleep. She has been sitting on the side of her bed muttering about going home her legs are so swollen with fluid they need to be up on the bed. We get her in the bed then 10 minutes later up she pops up. I don't think she slept at all last night had a few hours the night before and spent the previous nights shouting. All about the desire to go home not sure how she is going to do this when standing is a struggle at the moment her mobility totally goes when she is tiered.
     
  9. myss

    myss Registered User

    Jan 14, 2018
    336
    If they get used to it, then it might not be as effective in helping them to sleep.

    Other than that (and ruling out any possible interference with medications they might be taking) I guess not.
     
  10. buttercups

    buttercups Registered User

    Dec 31, 2015
    19
     
  11. buttercups

    buttercups Registered User

    Dec 31, 2015
    19
    Hope the melatonin works for your mum. Unfortunately it didn't work for my mum. We tried everything to get to sleep
    She's ow on zopiclone and olanzapine. This combination has helped even though she's on the go all day, agitated she does sleep a gud 6 hours at night
     
  12. bmca

    bmca Registered User

    Nov 11, 2018
    29
    We seem to have gone through most of the problems of erratic sleep with shouting and screaming. Never found anything that could help. He's drowsy all the time now. No change in medication. Still hates going to bed and reacts badly. Can moan all night because he wants to get up but generally sleeps through. I thinking his body is winding down. Who knows. It's all if's with this dementia and slightly more difficult because he has Downs and has trouble communicating pain or locating it. I wish you luck and a good nights sleep
     
  13. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
    I'm dealing with change of sleep pattern with my mum who has moderate/mid stage AD.
    She lives alone at home since dad died end of Oct, n for couple of weeks now has been having unsettled sleep, staying up all night cat napping in the chair or going to bed for few hrs and then getting dressed and going downstairs.
    I have cameras in the house so can see her on my phone when I too wake at daft o'clock.
    Tonight I phoned her and she fell asleep answering the phone and left it off the hook, couldn't get in touch obviously so shot round in car and decided to stay the night.
    She usually is compliant and goes to bed when I suggest but tonight she refused to accept I was telling the truth about staying with her,totally refused to go to bed..so I'm upstairs typing this and she's fast asleep downstairs!
    No sign of water infection and just wondering if we're moving into the next stage of the disease process?
    Any help would be appreciated although I may not reply tonight as I can hardly keep my eyes open!
     
  14. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Before my mum moved into care and lived at home she was regularly up through the night wandering. Pulling the curtains on and off and eating her breakfast a couple of times through the night. I decided to stay with her and then realised the full scale of things. She was up and down all night. I would get her back into bed and a few minutes later she was up again. Over and over again. Tested by the GP for urine infection and sadly nothing so it was Alzheimer's. During the day she would get undressed and go to bed and when I arrived to take her out she would be very confused as she said it was bed time. The outcome - I moved in through the night and brought her to our house during the day. I sort of managed for months with some help from the GP but the medication didn't seem to have any effect and we couldn't leave her alone even whilst going into the kitchen to make a drink. We also had webcams thinking we could watch whilst we made a meal. We ended up with either myself or my husband by her side every minute of the day. She moved into care almost two years ago and the decline has continued. I was heartbroken that I couldn't look after my mum and initially was adamant that she would never go into care. It had to happen and now two years on I know I couldn't cope alone. Still very, very sad and I sit with her in the care home every afternoon. I hope you can find a path through this terrible situation xxxx
     
  15. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
     
  16. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    19
    Thankyou Yorkshire Lass,
    Myself and hubby have been for tea at mums and yet again from carers reports and web cam reviews she's been asleep most of the day.
    She did eat some tea with us and agreed to a bath this evening..(bonus!!) but is now fast asleep in her nightclothes in the chair.
    My hubby says to leave her as she's settled and I'm tending to agree with him tonight due to the angst that was shown last night from her and the fact that I was in a car accident today and just feel rubbish and really can't deal with the upset.
    No doubt il wake at 'daft o'clock' and look at the cameras..feel guilty that she's downstairs and I'l have a sleepless night!
    Anyway thanks for the reply and fingers crossed this sleep issue resolves asap (but I doubt it!)
     
  17. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Hi Joy, hope you are feeling better today. It's so hard to have to deal with anything else other than caring. It just becomes overload! After two years in care for mum and me battling repeatedly with the so called "Memory Clinic" we had an appointment with the Elderly Care Mental Health Consultant.Who knows if this is the same department? I've given up trying to understand the workings of the NHS response to Alzheimer's patients. The consultant listened to my renditions of mum not sleeping at all for 2 or 3 days and this in my opinion producing behaviour like an over tired toddler that the care staff find a challenge. He has prescribed Quetiapine (half a tablet before bed). Apparently it is a mood stabiliser so we'll see. I asked him if we could try and treat what is actually happening instead of what might happen. The medics constantly tell me that medication to induce sleep is a falls risk especially as my mum is blind. Surely a potential risk is better than the situation my mum has been in for the last few years and especially more recently as her sleep pattern has declined still further. In the early days at home I found our GP much more sympathetic and helpful with medication. I really hope you get some help so you can all sleep. With love Julie xxx
     
  18. Busybeejg

    Busybeejg New member

    Mar 31, 2019
    2
    Er
     
  19. Busybeejg

    Busybeejg New member

    Mar 31, 2019
    2
    I’ve experienced this with my dad who is later stages of dementia. He’d get up at 2am fully dressed having his breakfast. He was going to bed at 6-7pm and alive found by staying up later until 9-10pm this has helped his sleep patterns
    Maybe worth a try
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hello @Busybeejg
    just to say welcome to TP
    I'm sure you'll find many useful suggestion here and there's always lots of support on offer from the generous and understanding members
    now you've found us, keep posting with anything that's on your mind
     

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