Sleep routine issues

[Caroline076]

Hi, mum has Alzheimer's and still lives on her own. In the last weeks, especially as nights have got darker her sense of day or night has gone completely. I had always spoken to her at 9.30pm, before she gets ready for bed, but now I honestly don't know when she's going to bed and if she's sleeping a lot in the day, she's definitely not as active.
Go to visit at 6pm..house locked up lights off etc assume in bed
This almost inevitably means I'll get phone calls during the night, usually between 3 and 4 am when she is up and thinking its day time wanting me to stop by. No matter what time of day it is she seems to think it's the opposite and trying to convince her otherwise is futile.
What should I do?
Really taking a toll on me now to have so much interrupted sleep myself and have to keep my life going as normal. I am only family and no support packages in place yet.

 

[canary]

Hello @Caroline076

Im afraid that this is a common problem.
There is not much you can do about it apart from switching your phone off at night to make sure that you get a good nights sleep.

The biggest problem, though, would be if she decided to start going walkabout during the night, especially if she is not dressed warmly. If you think this might be a problem, you can get door alarms to alert you when the front door is opened, but I must say, that it was the final thing that meant my mum had to move into a care home

 

[Anne19]

Hi @Caroline076
We had the same with my mum last winter - her whole sense of day and night went and she was going to bed at 4pm some days and then was up in the middle of the night ringing me and my brother. It then got to the point that she left the house and went out at 3am - luckily she only went to the next door neighbour’s (I felt bad that they had been woken up!). She could not understand why it was dark out and where everyone was. It must have been very scary for her.
That for me was the point that I knew she was not safe living alone and things were only going to get worse.
We took time to find a care home over the following few months and she has been there since July. She is settled well and although I could never say she is totally happy she is definitely safe, eating better and is occupied with activities. She refers to her room as ‘home’ but puts her coat on every time she leaves the room as if she is going out of her house. She has once again this winter started going to bed early but now there are staff there to encourage her to get up and come and have her tea, therefore delaying the time she goes to bed.
It is very difficult for you and you have lots of hard days and decisions ahead to be made I’m sure.
Take care of yourself xx

 

[Caroline076]

Hi @Caroline076
We had the same with my mum last winter - her whole sense of day and night went and she was going to bed at 4pm some days and then was up in the middle of the night ringing me and my brother. It then got to the point that she left the house and went out at 3am - luckily she only went to the next door neighbour’s (I felt bad that they had been woken up!). She could not understand why it was dark out and where everyone was. It must have been very scary for her.
That for me was the point that I knew she was not safe living alone and things were only going to get worse.
We took time to find a care home over the following few months and she has been there since July. She is settled well and although I could never say she is totally happy she is definitely safe, eating better and is occupied with activities. She refers to her room as ‘home’ but puts her coat on every time she leaves the room as if she is going out of her house. She has once again this winter started going to bed early but now there are staff there to encourage her to get up and come and have her tea, therefore delaying the time she goes to bed.
It is very difficult for you and you have lots of hard days and decisions ahead to be made I’m sure.
Take care of yourself xx

Thank you so much for replying, my mum just seems to be deteriorating quickly in so many ways and it's becoming very overwhelming trying to manage by myself and taking a toll on my young family.

 

[Caroline076]

Hello @Caroline076

Im afraid that this is a common problem.
There is not much you can do about it apart from switching your phone off at night to make sure that you get a good nights sleep.

The biggest problem, though, would be if she decided to start going walkabout during the night, especially if she is not dressed warmly. If you think this might be a problem, you can get door alarms to alert you when the front door is opened, but I must say, that it was the final thing that meant my mum had to move into a care home

Thank you for replying. Yes that is my concern along with not knowing if and when she's eating as her whole day has shifted. Tried to visit her today at 12pm, couldn't get it in but could see she was asleep on sofa through window. My husband went back a few hours later and was sure he woke her up and she couldn't tell him and he couldn't see any sign of her having had lunch. She complains the neighbours are up all night, when it's just evening time but pitch dark. Then also complains neighbours are all lazy cos quite rightly no one else's house is up at 3am ! I know I should turn off the phone, but I'm the only person she contacts and I'd feel guilty if she actually needed me

 

[Violet Jane]

It sounds as if your mother now needs carers coming in twice a day to supervise washing and dressing and the taking of medication (if any) and to ensure that she is eating some meals. With a young family, it's too much for you to visit twice a day.

Once a PWD gets confused about day and night it's very difficult to get him/her to keep regular hours, particularly if s/he lives alone. It's common for people with dementia to fall asleep in their armchair fully clothed and wake up in the middle of the night thinking that it's the morning.

 

[Caroline076]

Thank you. Yes this seems like very big decline quite suddenly and certainly taking its toll on me and my family with being woken with calls at night. I'll try to escalate request for care support

 

[HannahbytheSea]

Hi, mum has Alzheimer's and still lives on her own. In the last weeks, especially as nights have got darker her sense of day or night has gone completely. I had always spoken to her at 9.30pm, before she gets ready for bed, but now I honestly don't know when she's going to bed and if she's sleeping a lot in the day, she's definitely not as active.
Go to visit at 6pm..house locked up lights off etc assume in bed
This almost inevitably means I'll get phone calls during the night, usually between 3 and 4 am when she is up and thinking its day time wanting me to stop by. No matter what time of day it is she seems to think it's the opposite and trying to convince her otherwise is futile.
What should I do?
Really taking a toll on me now to have so much interrupted sleep myself and have to keep my life going as normal. I am only family and no support packages in place yet.

Hi Caroline,

Our stories sound completely identical. My 85 year old mum lives alone as she is still very independent. We have no care package in place and I am her sole carer. I have no siblings, my husband runs a business so is working all of the time and we have a young child. I work every day, but shorter hours (I work in a school). I see my my every day when I finish work and so that she sees my son, but this week my son has been poorly with Chicken Pox so I’ve not been able to see my mum. It has complete thrown her into disarray and I’ve woken this morning to 6 missed calls from 4am to 6am and when I called her back it’s the very same as you’ve written - confused about day and night.

As with your mum, my mum seems to be deteriorating fast - since May this year she’s been very confused and becoming verbally aggressive with me. It takes its toll some days as I’ve got my young son, who I need to prioritise, but it’s not always that easy.