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Waking 11-12 times a night

Discussion in 'I care for a person with dementia' started by IzzyJ, Aug 24, 2015.

  1. IzzyJ

    IzzyJ Registered User

    Aug 23, 2015
    My mum (mid to severe dementia) has drifted into waking many, many times every night, wanting to get up to go to the loo. No UI, and the doc just says it's part of the dementia. It's so exhausting (she's at home). She doesn't doze during the day even. Please, can anyone with more experience tell me if this is normal, is it just going to continue like this now? Thank you for listening.
  2. balloo

    balloo Registered User

    Sep 21, 2013
    my MIL does this looking in cupboards ,wardrobe etc dr gave us meds but we have now stopped them as they made it worse .MIL is mid to late stage demeniatia
  3. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    My mum does this too,she's also at the same level as yours both too,also has this obsession in wanting the toilet (she has a permenent catheter!)and also checking to see if we(she lives with me and my children)are in the house! This happens throughout the early hours and continues until mid morning when she will nod off for an hour.
    The medication she is currently on as a trial for the past week,has little effect-so I'm going to discuss with the cpn about trying something else,as this issue will surely be the cause of my mum going into a care home.. I always thought the double incontience that dementia sometimes brings,would be that turning point,but no,I have gotten used to cleaning up the mess,it's the lack of sleep that is making me ill,and possibly edging into menopause,I really do feel rundown.. I'm sorry I can't be much help,but I would urge you to ask your cpn,or GP for help,medicine wise there may be something to suit your mum and ease things hopefully for you too.

    Sent from my iPhone using Talking Point
  4. Beate

    Beate Registered User

    May 21, 2014
    My OH had a phase where he did this. It was when he could still to an extent control his urine flow and wanted to go to the toilet. It didn't bother me at home as we have separate bedrooms, but was a nightmare in a hotel. Then his incontinence got worse and he stopped getting up at night completely. Undisturbed nights but more washing now!
  5. Tin

    Tin Registered User

    May 18, 2014
    For a time it was normal here, wanting to go to the loo, a cigarette, messing around in bedroom, wanting to know where her dog was and getting her back to bed was so draining. mum never took a nap during the day although she did look tired. I think it was some kind of sundowning. Tried Lorazapam to ease the anxiety not given every night, but the after effects to this sometimes harder to deal with than the problem itself and the problem was trying to get mum to sleep and stay asleep for at least 5 hours. Then we tried sleeping pills, ok for a while. It was only when her anti depressants were changed and given Diazapam when needed things improved or maybe the Dementia was moving on at the same time. Putting dvd on in her bedroom did help a little. Also found myself taking lots of afternoon naps and mum would leave me to sleep, while she watched tv!

    For me, if she was just simply getting up and wandering a little and then falling asleep in a chair I would not have minded, but that's not how it was, she made so much noise and was always trying to escape from the house.

    Its still ok, but some of the wandering is creeping back, wanting to go to the toilet mainly. she has a commode in her room and so to avoid any early morning wanderings I 'lift' her around midnight. no lights on and when finished, get her back into bed quickly with little talking if any.

    I'm rambling on again. Sorry not much help only to say that it may just be a phase and could stop soon, fingers crossed you find a way to deal with this one.
  6. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Dad used to sleep upstairs in the room next to mum. He'd get out of bed every 30 minutes or so and go and wake her up or else lie in his bed calling for her. She was getting no sleep, so she ended up moving him downstairs. He now gets up at about 3 am, gets dressed, packs his bedding away and potters about. Mum will check on him once or twice to make sure he's not doing anything dangerous, but other than that she pretty much lets him get on with it. It was that or go insane from lack of sleep.

    The weird thing is that he can do all that in the early hours of the morning, but during the day he is completely unable to do any of those tasks!

  7. nov14

    nov14 Registered User

    May 27, 2014
    Goostrey, Cheshire
    Mum is very similar. She gets up and wanders round the bungalow opening and closing all the doors. She comes and stands next to my bed then sometimes she'll take herself back to bed others she either shakes me awake or plays with the dogs on my bed until I tell her to go back to bed.

    Sent from my iPhone using Talking Point
  8. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Hello izzyj. There is substantial literature on the use of paracetamol to reduce agitation in people with dementia . I sometimes give my mum one tablet with good effect . Please check with your gp before doing this though in case of renal problems , as 1gramme can be too much if she does have renal issues . My mum was started on trazadone a few months ago which I believe has helped. Occasionally she has restless nights but it's usually due to a urinary infection which I give her d mannose for with good results . As I said before , please check with your gp before giving anything . Best wishes . Lou
  9. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Just to lighten the mood for a change, this does remind me of the first time my dad ever went night wandering. He appeared by mum's bedside in the early hours, naked from the waist down and holding a cup of tea. He said "Here you are, John". Mum replied, "First of all, YOU are John, and secondly, where the **** are your trousers?" :rolleyes: I laughed at the time. Little did I know!

  10. Notenoughsleep

    Notenoughsleep Registered User

    May 25, 2015
    This is exactly how my mam is ,averaging 11 times per night, and she does go to the toilet each time. Doesnt sleep in the day either, just doesnt seem to need sleep ! Gp won't prescribe bladder controlling drugs because of the frequent uti. She is so unsteady on her feet and incoherent, I've had to employ night sitters for 7 nights, so expensive! Care homes are reluctant to take her on when I mention the night time toileting. Gp initially prescribed zoplicone and the first night she slept for 4 hours solid, we thought we had cracked it. Short lived tho as next night back to normal. Gp now considering tamazepam , fingers crossed! Hope you get lucky with something.
  11. IzzyJ

    IzzyJ Registered User

    Aug 23, 2015
    Thanks so much to everyone who has replied. It helps to know this happens to others, even if it does confirm it is likely to continue. The idea of a paracetamol is interesting, will check that out. With my mum, she can't be left to get up on her own because she gets so wobbly when she gets up and might fall.
  12. IzzyJ

    IzzyJ Registered User

    Aug 23, 2015
    I really feel for you too, Notenoughsleep. We can't get a GP appt until the end of September, but will discuss what she could be given again then.
  13. Notenoughsleep

    Notenoughsleep Registered User

    May 25, 2015
    Hi there,
    Just wondering how you got on with your appointment. My mam was prescribed temazepam which brought her waking times from 11 to 7 per night. We had another appointment with consultant who prescribed melatonin to regulate her sleep . She now wakes 2/3 times per night which is much better but she still can't be left alone for fear of a fall. What was your mum prescribed?
  14. zomum

    zomum Registered User

    Oct 26, 2015
    This is the element of caring for mum that pushes me over the edge - I cannot function without sleep. Mum was pacing all night every night, opening and closing doors and drawers and cupboards - even trying to get out of the front door.
    She has renal failure and was obsessed with needing to wee every 2 minutes eventhough she doesn't pass urine. We have got her a commode to put right next to the bed to see if it helps. She is now in hospital so we haven't had a chance to test it yet.
    She was extremely aggressive and difficult during the night too, much more so than during the day and would try to pretend that there was a perfectly logical reason for her to be rummaging in a sideboard at 3 in the morning!
    She was prescribed temazepam but it had no effect on her. The GP upped her dose to something that would knock out a horse and it still didn't help.
  15. Goldsmith

    Goldsmith Registered User

    Oct 21, 2015
    Maldon, Essex
    My father in law moved in with us just 8 days ago and since then I have been awake day and night. He gets out of bed frequently varying from 8 to 11 times and insists on tottering to the loo - he is extremely unsteady on his feet. He cat naps during the day and because he is such a quiet man he cant be left alone at all because he just stands up, for no apparent reason and we just don't hear him.
    I was advised to join this forum to 'meet others in the same position as us and from reading this thread it looks like we need to join forces in the small hours as it looks like we just have to grin and bear it and I should consider myself lucky that we haven't had to struggle on like this for years.
    My FIL is a dear, sweet and humble man and I am determined to do my best for him, he looks me straight in the eye and begs not to be put in a home.
    We have had no support or information at all during this week so I might just be popping on here a lot in the near future.
    I cant offer anyone advice at this stage but if you ever need to offload, well, im a good listener.
  16. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    My FIL is the same. He's really unsteady on his feet so I have a baby monitor in his room and I wake if I hear him moving. Just lately though he doesn't tend to move around the room as much. He sits on the edge of the bed, disconnects the bag from the catheter, quite often he has thrown his duvet on the floor so that gets soaked or he'll lay in bed and disconnect it so I have to get him up to change the whole bed.
    His latest thing is to talk and shout all the while he's awake. Usually a non stop ramble about how he can't sleep and can't I see that he's trying. He also likes to bang on the bedroom wall which wakes the entire house.
    He and MIL are in respite for a fortnight, so we're hoping to move things around, including moving his bed away from the wall.
    I'm just enjoying getting a normal amount of sleep. I've had one undisturbed night and I have 14 to go. I feel like all my birthdays have come at once.

    Sent from my iPhone using Talking Point

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