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. Zinnia

    Zinnia Registered User

    Aug 10, 2014
    West Sussex
    My husband has had Alzheimers for around twelve years now so a very slow decline. We’ve managed quite well up to now, he’s been easy going and I know I’ve been very fortunate. But over the last two weeks I've had trouble getting him to bed and it’s really causing me stress, I start dreading the evening and the hassle I know is coming. I’ve tried everything in my. “persuasion “ repertoire, but he just sits on the sofa with closed eyes and says “ no”. The other evening I didn’t get him to bed until two in the morning.!

    I’m sitting here having tried for the last 40 minutes without success. He forgets things almost immediately so I’ll wait ten minutes (for me to simmer down) then have another go ......but I find it so hard to be relentlessly cheerful when inside my head I’m yelling and shouting at him. Any suggestions please?
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    #2 Palerider, May 20, 2019
    Last edited: May 20, 2019
    Sometimes when mum won't go to bed I put a blanket on her and make sure she's in a fairly good neutral position and leave her. In the morning she's either still there having slept with a stiff neck or has migrated in the night to her bed. A tough one for you, and no right or wrong answer....others may differ with me...
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Any sudden change in behaviour could be caused by an infection, such as a UTI, and it's worth having that checked.

    There is a Society Factsheet that deals with changes in behaviour, including sleep disturbance and sundowning, and that can be read if you click the PDF line of the undernoted link. Pages from 17 onwards deal with these issues
    Changes in behaviour (525)
    PDF printable version

    Good luck with this, dementia can be tough enough without such stresses.
  4. Zinnia

    Zinnia Registered User

    Aug 10, 2014
    West Sussex
    I have thought of doing that Palerider but his sofa is next to the fireplace and I’m scared he’d roll off and hurt himself. The other problem is he is incontinent so I do have to prepare him for the night. Doesn’t always work and several times he’s gone to bed fully clothed ( including slippers) and I just have to keep my fingers crossed. I sometimes don’t care as long as I get him into that bed.
    Oh well, let’s have another go but I feel another late night coming.......
  5. padmag

    padmag Registered User

    May 8, 2012
    This sounds familiar to me. Richard hasn't been in his bed for nearly one year. It started like you describe with me getting frustrated as he just would not lay down, and I would keep trying, sometimes with success other times not. It meant he would sleep on the sofa, where I would cover him up like in bed. That was ok for a while until he started slipping off the sofa onto the floor where I would need the paramedics help to get him up. He also did slip out of his bed sometimes. Now he goes to bed in a raised wing chair with pillows which seems safe and he is happy there. He used to move around at night and end up in the kitchen, but with some loss of mobility he stays in the chair until morning. Who knows this may change at any time. Maybe it is something to do with spacial awareness in the brain? He used to be almost frightened of going to bed, maybe he thought he would fall. I hope you find some sort of solution as it is exhausting every night for you.
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Will he not take himself off to bed when he is ready, once you have sorted his incontinence for the night? Do you share a room?
    I moved into another room when my OH was recovering from major surgery - now he has dementia, I have stayed there.
    I go to bed about 10.30pm and he goes to bed about 2.30am - it drives me potty too, because he clatters around and wakes me and then I cannot get back to sleep - even in another room.
    Or do you have a dining room or some space that he can have downstairs, with a bed in, so he can snooze/sleep when he feels like it.
    I know with dementia some people ( and my OH is one) revert to 'baby days' when the 24 hours of our day means very little to them, and they just wake and sleep whenever they feel like it....

  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
    Each person is so different. I haven't experienced any falls or slips yet, although this may well change. Its very difficult to know what to do sometimes, especially when our anxieties keep us from doing the things we need to do for ourselves. Mum finds her way to bed sometimes when she is ready, we have a nightlight on the stairs, as she forgets to put the landing light on. I have watched her a few times when she's woke me and its like she's sleep walking.
  8. rhubarbtree

    rhubarbtree Registered User

    Jan 7, 2015
    North West
    Hi Zinnia,

    Like you I dread bedtime. OH hates me turning the tv off. If I am lucky he might go to the toilet and I can vacate living room, turn the lights out, and be in the kitchen to give medication, all cherry and happy as if we have agreed to this. My OH has absolutely no memory of where bedroom is and when I say 'go upstairs' he says something like ' that's original'. Upstairs we have procrastination about every piece of clothing. He has never liked being cold so sometimes I can encourage getting pyjamas on and getting into bed by saying "the heating has gone off, get into bed quick".

    However, on bad days, I have had to leave him downstairs. It is worrying. Hope you did get to bed eventually.

    I also have the 'not wanting to get up' at a reasonable time. Yesterday he came downstairs, still in pyjamas, at 2.30. I try to avoid this behaviour as two days at week he has to be up for the day centre.

    So with my OH it is not that he does not want to go to bed. It is rather he does not want to do what I suggest perhaps because he cannot see the reasoning behind it. The other day having hassle in the bathroom I was thinking that perhaps I should give up and start looking for a care home and I just said, very quietly and calmly, "Don't you want to live with me in this house anymore?" In some way he seemed to understand what I was thinking. His attitude changed and we got through the showering and shaving.

    Awful day yesterday but better today as I once again used the 'redirecting after a toilet trip" to keep him in the bathroom and begin showering routine.
  9. bmca

    bmca Registered User

    Nov 11, 2018
    So difficult to find an answer. I tried everything I could think of but eventually had to leave him to shout and scream because I was exhausted. He was like a demanding baby who after a couple of hours fell asleep. Two years later and he still shouts that he is not going to bed but falls asleep within minutes.
  10. Zinnia

    Zinnia Registered User

    Aug 10, 2014
    West Sussex
    Thanks so much to everyone who’s posted a reply, it’s really comforting to know others can empathise.
    For me it’s just like looking after a toddler, you have to constantly give direction, encouragement, some reprimand and provide amusement and, like a toddler, you also get tantrums as well.....hence the nonsense at bedtime. It is so hard at times not to get cross.The number of times I get him undressed to shower and then he won’t go in the cubicle or the appointments we don’t get to because he won’t get out of the car.

    I am keeping my fingers crossed however as these last two evenings have gone smoothly........I’m on the lookout and the moment he shuts his eyes I suggest it’s time for checking his pants.Then straight into the bedroom and into bed. I am helped slightly in that he refuses to get fully undressed so trousers and jumper come off and then he’s all ready. I think it’s mainly tiredness that makes him so belligerent in the evening. So If he’s had a busy day and gets tired early then he’ll go to bed early. At least thats the plan....... Good luck to the rest of you!

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