Hi my Mum was diagnosed with alzheimer's and vascular dementia in June 23 she is 79 and stays at home with my dad. My sister and I help my dad to look after her. My dad is 81 and wants to keep my mum at home as long as possible. The main problem we have is mu mum will not go upstairs now and this had been for 4 months now and sleeps on the couch sitting up, we have tried everything to get her too even lie down on the couch but she will not do it. Also my mum is crying all day and night. She has been put on anti psychotic tablets and sleeping tablets but only sleeps about 4/5 hours in a day and my dad is really struggling with lack of sleep himself and we are all worried about the crying from her . Don't know what is causing this as another relative had dementia and slept OK and didn't cry all the time and I know they can all have different things. Sorry I'm rambling a bit never been on a public forum before. Just overwhelmed with how quick she has declined and how sad it is with her crying and we have had her checked with the district nurse who comes in everyday to give her her insulin that she has nothing hurting her .
Mum not going to bed
- Thread starter ganzo
- Start date
Hi and welcome 💕
I think it can be quite common to have a wave of emotions, if pain or discomfort, infection have been ruled out of course. Dad can go from overly happy to angry or crying in a heart beat. I don't think there is any specific reason sometimes as such just the nature of the illness.
It isn't uncommon either to not get in to bed. Everyone within their illness will be different.
The main thing that stands out to me is your Dad and the impact of caring in his advancing years. Would he consider some help? even a little bit so he can get his head down for some extra sleep or even respite perhaps, with the assurance that Mum would come home again if that is his worry.
You will find lots of advice and support here and on the main site too. I have used the admiral nurse service as well which was helpful and there is also a helpline. Support is important however you find it and even if you don't feel like posting again you can still find it useful to read the advice and experience of others here. Take Care of yourself.
I think it can be quite common to have a wave of emotions, if pain or discomfort, infection have been ruled out of course. Dad can go from overly happy to angry or crying in a heart beat. I don't think there is any specific reason sometimes as such just the nature of the illness.
It isn't uncommon either to not get in to bed. Everyone within their illness will be different.
The main thing that stands out to me is your Dad and the impact of caring in his advancing years. Would he consider some help? even a little bit so he can get his head down for some extra sleep or even respite perhaps, with the assurance that Mum would come home again if that is his worry.
You will find lots of advice and support here and on the main site too. I have used the admiral nurse service as well which was helpful and there is also a helpline. Support is important however you find it and even if you don't feel like posting again you can still find it useful to read the advice and experience of others here. Take Care of yourself.
Hi Ganzo
My mum also doesn’t go to bed. She also sleeps sitting up on the settee. This unfortunately leads to the cellulitis in her legs getting worse as she doesn’t have them raised. Even when I am with her and physically put her to bed in her bedroom, she gets up and sits on the settee again. I think it is common for some people with Alzheimers and has a name - sundowning.
My mum also doesn’t go to bed. She also sleeps sitting up on the settee. This unfortunately leads to the cellulitis in her legs getting worse as she doesn’t have them raised. Even when I am with her and physically put her to bed in her bedroom, she gets up and sits on the settee again. I think it is common for some people with Alzheimers and has a name - sundowning.
Ho @ganzo and welcome to Dementia Support Forum our friendly and helpful community. This is a great place to ask questions, get helpful suggestions and share with people who truly understand. You have had some good comments already and there is not much I can add. It is quite common for people with dementia to sleep in a chair rather than going to bed. How much this matters varies depending on other health issues such as circulation problems.
Your Dad's wish to keep your Mum at home is understandable but may only be possible if he is willing to accept regular visits from carers. Ultimately even that might not be sustainable and admission to a care home might become necessary. That's not inevitable and nor is it as dreadful as it is sometimes portrayed. The best thing that I ever did for my wife was to recognise that she would get better care in a care home than I could possibly manage at home.
Your Dad's wish to keep your Mum at home is understandable but may only be possible if he is willing to accept regular visits from carers. Ultimately even that might not be sustainable and admission to a care home might become necessary. That's not inevitable and nor is it as dreadful as it is sometimes portrayed. The best thing that I ever did for my wife was to recognise that she would get better care in a care home than I could possibly manage at home.
Your dad wants to keep her at home foras long as possible (like we all do), but I honestly think it has reached the stage of it being no longer possible.
Your dad cannot survive with no sleep and the way things are not is simply not sustainable. Everyone is different, but being awake at night, not wanting to sleep in their bed and prolonged crying are all things that are quite common in advanced dementia.
Most people with dementia reach a stage where their needs are too great for one frazzled and sleep deprived carer to deal with - however loving and willing - and what they need is a whole team of people working in shifts around the clock. In other words, Im talking about a care home. Care homes are not all bad places. My mum had to move into a care home and after she settled was happy there and I could go back to being her daughter again
Your dad cannot survive with no sleep and the way things are not is simply not sustainable. Everyone is different, but being awake at night, not wanting to sleep in their bed and prolonged crying are all things that are quite common in advanced dementia.
Most people with dementia reach a stage where their needs are too great for one frazzled and sleep deprived carer to deal with - however loving and willing - and what they need is a whole team of people working in shifts around the clock. In other words, Im talking about a care home. Care homes are not all bad places. My mum had to move into a care home and after she settled was happy there and I could go back to being her daughter again
Thank you all for replying to me . My mum also has cellulitis from this. Its good know that others have experienced their loved ones not going to bed and sleeping like this as we have been feeling so guilty about this as a family. My dad has found it really hard to accept everything regarding my mum and they were very private people. My sister and I along with occupational health have finally got through to him that he needs at least carers in just now for personal care for my mum which has been put through as urgent and is due to start next week. This is a big step for him and hopefully will be the start of him accepting this. Thank you again everyone it is so good to speak about this and will be no doubt back on as our journey continues.
Just like my mum before she moved into a home. I used to drop in on the echo show in the middle of the night and remind her it was bedtime. One night I stayed logged on and 20mins later she came back into the living room. The cellulitis was a real problem
Just like my mum before she moved into a home. I used to drop in on the echo show in the middle of the night and remind her it was bedtime. One night I stayed logged on and 20mins later she came back into the living room. The cellulitis was a real problem
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