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Waking up at 'stupid o'clock' and wandering

Herewego

Registered User
Mar 9, 2017
92
My OH has started waking up at what I call 'stupid o'clock' and then getting dressed, going downstairs and then going out of the house. I then get a phone call (bearing in mind I have no idea how he calls me as he can't seem to call anyone else! - good thing tho').to tell me he is headed off to Scotland (we are in the south of England) or today he rang and was going to Brazil or carrying on to the Prince (local Pub), by the time I got downstairs, he was home.

I have now ordered (at some considerable cost!) an alarm system for the house - will have alarms on our bedroom door and all external doors. Annoying bit is that there are 3 others that live with us and I will get buzzed whenever they use one of the doors as there does not appear to be a system (affordable) that can be switched off by using an access code or other device, to let those that are able to go out or in without setting off the alarm. Initially I am planning to change the door everyone else uses and they can switch off the alarm on that door when they go out in the am (which would normally be later than when the OH goes out) - guess it will be trial and error to start with.

The need for an alarm is that at the moment, I don't wake up when OH gets up and goes out (he can be very quiet when he wants to be) so this should at least mean that I will get woken up.

My questions are:
  • has anyone else used alarms, did they work, which one did you use
  • has anyone else used medication for sleep and did it work, what type did you use?
  • I know that when my mil went through her wandering stage it did stop, but this may have been mainly due to her physically being unable to wander anymore, rather than the desire to wander stopping - anyone else have an opion/experience of this?
  • how long does this stage last??
 

marionq

Registered User
Apr 24, 2013
6,117
Scotland
IT was hell while it lasted and only stopped when:

He was put on Trazodone

His damaged knee got worse so he is less able to wander

He started going to daycentre which kept him occupied and wore him out

I am currently waiting for a pressure pad which sets off an alarm when he steps out of bed. This is not because he is still leaving the house but in case he wanders in the house or has a fall. You have my sympathies.
 

LadyA

Registered User
Oct 19, 2009
13,607
Ireland
My husband used to only sleep for 1 1/2 to 2 hours at a time, through both day and night. He would get up and wander around the house, and not be able to find his way back to the bedroom. Nor could he find lights in the other rooms. I locked all outside doors and removed keys at night, so he couldn't get out. In the house (a bungalow, so he couldn't fall down stairs), he was safe enough. I also put a whole array of small motion sensor lights around. One came on as soon as he stood up from bed, another as he moved around the end of the bed toward the door, then as he walked down the hall, his way was lit, etc. The lights went off after about 30 seconds. It did mean he didn't fall in the dark though! I just felt he was safe enough, and left him off. Sometimes, when I'd wake up and go and get him, he'd be quite happily dozing in an armchair, and other times, he'd greet me with "There you are! I couldn't find you!" I think what was happening was that he would wake up, not realise, in the dark bedroom, that I was there with him, and go off looking for me!

I hope you find a solution. It's very wearying, while it lasts!
 

tss502

Registered User
Oct 20, 2014
110
Hi, we had a similar problem last summer in that my OH would wake up very early and get in and out of bed repeatedly or go off prowling through the house. Thankfully he didn't leave the house at any point but I had some very disturbed sleep. He still does this occasionally but much less now, and I found the following helped:

- getting him to have a bowel movement before he gets into bed to go to sleep. Seems to lessen the need to get up in the night, and then get confused about going to the loo in the dark, which seems to result in some 'back and forward' between the bed and the loo.
- tiring him out during the day - we had to increase our carer hours because during the day he was wandering when he was along during the day and I was at work. This now means he is fully occupied pretty much all the time I am out at work, and they keep him busy with lots of physical activity and taking him to groups. So he generally seems to sleep better at night.
- reduced coffee intake.

I've tried giving him a herbal sleeping aid once or twice when he has been very restless (Neuroaid) and this has made a minor improvement (also for me when he has woken me up and I'm struggling to get back to sleep). I do have some sleeping pills from his consultant but we haven't used these as yet - for emergencies only!
 

love.dad.but..

Registered User
Jan 16, 2014
4,535
Kent
Unfortunately my dad's waking pacing and getting dressed nights and the compulsion and need did not phase out although slower until end of life rather than the previously determined walking. Zopiclone was tried but made no difference and then he started having regular falls with head injuries so it was stopped as there is a link with increased risk of falls with this medication and dementia. Continuous Sleep deprivation and disturbed nights for me were one of the aspects when I lived with dad that led to a NH.
 

Herewego

Registered User
Mar 9, 2017
92
Thanks for all your input everyone - we had an appointment with the memory clinic specialist yesterday and he has doubled the dose of Clonazepam (taken for REM sleep disorder). Based on last night - it has made no difference, he was up at 4.30am. It is only the first night of a dbl dose, so hoping it will make a difference once it is built up in his system. I don't however hold out much hope.........

The alarm that should have arrived on Thursday hasn't..annoying, shows it is out for delivery and someone has been at the house most of the time, but we either missed the delivery or they never actually stopped - will see if they try again today (Saturday).

I need to work out how to lock all our doors - make sure everyone else in the house has multiple keys and that I can lock the doors so OH can't get out without me knowing. We have 4 external doors, so not so straightforward.

Light on the horizon is that we found out late on Friday that the day centre I want OH to go to has space on Tuesday & Thursday, my preferred days for him to go! Yah!

So....will see how this week goes :) Have a good weekend everyone, hope our loved ones sleep when they should, don't wander when they shouldn't and we are able to have a laugh or two - the sun is out and it is the weekend.
 

Andrew_McP

Registered User
Mar 2, 2016
264
South Northwest
This cheap and cheerful alarm works for me...

https://www.amazon.co.uk/1byone-Wir...coding=UTF8&psc=1&refRID=SC1621GY96GT5YQBMKK2

Once Mum's 'settled' I put one of the sensors (batteries seem to last a long time) in the hall opposite Mum's room and plug the alarm unit in next to my bed. I will probably get dementia due to lack of decent sleep, but at least I won't get up to find poo everywhere except where poo should be, or Mum everywhere except where Mum should be.
 

myss

Registered User
Jan 14, 2018
439
My OH has started waking up at what I call 'stupid o'clock' and then getting dressed, going downstairs and then going out of the house.
I use this phrase too! - I thought I was the only one!! But unfortunately I used that phrase as a descriptor for the calls my family got when my dad wanders. He used to live on his own, but the wandering hasn't slowed down and someone is now with him as he needs something to physically stop him from going. This has been in the form of a locked door, and like you @Herewego there are multiple ways to leave his property but, so far he only goes through one of them to wander and that's the one we lock. Does your OH go through one way? It may be that you only have to put an alarm at that door or lock that one door instead of having to go through the rigmarole of wiring up all exits.

We've not used alarms or medication because the locking has quite worked well so far (only once when the person staying over was woken up by a neighbour calling out from downstairs... yep Dad unlocked the door [a first] and went outside and was lost. The key is now removed). I'd also like to know if the wandering behaviour diminishes after a (long) while but I suspect I know the answer - no - unless something impairs the pwd so that they cannot physically do so. My dad's impulsion to do so has been going on for about three years now, in my opinion it's one of the worst behavioural traits of dementia.
 

Herewego

Registered User
Mar 9, 2017
92
We've not used alarms or medication because the locking has quite worked well so far (only once when the person staying over was woken up by a neighbour calling out from downstairs... yep Dad unlocked the door [a first] and went outside and was lost. The key is now removed). I'd also like to know if the wandering behaviour diminishes after a (long) while but I suspect I know the answer - no - unless something impairs the pwd so that they cannot physically do so. My dad's impulsion to do so has been going on for about three years now, in my opinion it's one of the worst behavioural traits of dementia.[/QUOTE]

Hi Myss - today is not a good day - he starts day centre tomorrow and based on today he will be going fromt he 2 days to 5 as soon as they have room!!!! On to wandering - the alarm arrived and I have not put it up yet - no wiring so easy enough for me to do, but have not yet decided if I will keep it as I had another thought. We used deadlocks on the doors and I decided that I just need to add them to the doors that don't have them yet, make sure the rest of the household knows where the the keys are (or give them one - they are all the same) and make sure OH doesn't have one nor know where to find one.

We looked after MIL when she was in the midst of wandering and I used to have to pick her up as OH would say - 'you go and get her as I will kill her' - this was in the 90's and it was only after she passed that we found out she had dementia. We also got someone to stay with her and lock her in by deadlocking the front door (she forgot how to unlock it with the deadlock on) - but she got around that by opening the living room window and then fell out and broke her hip! If they want to get out, they will still find a way!

At the moment I have found that my OH won't go out of our bedroom until he has dressed, so have been taking away his day clothes (putting them into the dirty clothes basket), then putting out his fresh clothes in the dressing room (which he forgets about). That way when he gets up he makes enough noise that I wake up and I can direct him to where his clothes are. It also means he isn't putting his day clothes over his night clothes, which he has been doing, and they are clean each day.

At the moment he is convinced we are renting a car that needs to be taken back or they will charge us for keeping it, that someone from the airport is coming to pick up his bags etal - this is a recurring theme for the whole of the weekend and today (has been before but had stopped) - as everyone else has said there is no way of stopping him believing what he believes - I can't distract him and he desperately wants to phone the company to sort it out or better yet go to the company and I should take him.........as I am babysitting our youngest granddaughter today, and she is now sleeping - can't take him out even for a drive at the moment! Will take OH and granddaughter to the park when little one wakes up - maybe a distraction, but I doubt it! Today is going to be a l-o-n-g day!!!!!!
 

Herewego

Registered User
Mar 9, 2017
92
This cheap and cheerful alarm works for me...

https://www.amazon.co.uk/1byone-Wir...coding=UTF8&psc=1&refRID=SC1621GY96GT5YQBMKK2

Once Mum's 'settled' I put one of the sensors (batteries seem to last a long time) in the hall opposite Mum's room and plug the alarm unit in next to my bed. I will probably get dementia due to lack of decent sleep, but at least I won't get up to find poo everywhere except where poo should be, or Mum everywhere except where Mum should be.
Thanks Andrew - as noted in my response above, while the alarm has arrived, I think I am going to send it back and what you suggest may well work too. At the moment as noted above, I am going to just put deadbolts on all the doors and hide the keys.

MY OH has also now been offered 2 days a week at the day centre, so I am hoping that will help make him tired enough to stop some of the wandering as well as some of the delusions. I am also going to tell the day centre that I will take additional days as room comes up so eventually he will be going for 5 days.

The memory clinic also offered anti-psychotics at our last consultation last week and I turned it down, but again based on the past weekend and today, I think I will contact them and say we have changed our mind and will take them now. My daughters were surprised I had not agreed during the consultation, so guess it was only me that was trying to delay medication!
 

Andrew_McP

Registered User
Mar 2, 2016
264
South Northwest
it was only me that was trying to delay medication!
I know how that feels. For me it's a case of 'better the devil you know', so although I have some lorazepam for emergencies, I've avoided having Mum put on antipsychotics even though that might make life better for both of us... for a while, anyway.

There are always risks with 'serious' medication though, so I tend to think that if I can cope, I should do. Plus it means there's one more thing in the arsenal that we haven't tried yet, and sometimes that little bit of hope that it might help is better than actually finding out that it doesn't!

That twisted logic probably makes no sense at all to most people, but twisted logic will be my specialist subject if I ever go on Mastermind.

All the best with your choice. My rational side says it makes sense to try things sooner rather than later, because there comes a point where very little helps with anything. So even if there are risks associated with the drugs, the risk associated with no help is that you can't cope and your OH suffers anyway.
 

Herewego

Registered User
Mar 9, 2017
92
I know how that feels. For me it's a case of 'better the devil you know', so although I have some lorazepam for emergencies, I've avoided having Mum put on antipsychotics even though that might make life better for both of us... for a while, anyway.

There are always risks with 'serious' medication though, so I tend to think that if I can cope, I should do. Plus it means there's one more thing in the arsenal that we haven't tried yet, and sometimes that little bit of hope that it might help is better than actually finding out that it doesn't!

That twisted logic probably makes no sense at all to most people, but twisted logic will be my specialist subject if I ever go on Mastermind.

All the best with your choice. My rational side says it makes sense to try things sooner rather than later, because there comes a point where very little helps with anything. So even if there are risks associated with the drugs, the risk associated with no help is that you can't cope and your OH suffers anyway.
Hi Andrew - I quite understand twisted logic - it is hard to know when the right time is for meds, and I come from a family of 'if you don't really really need it, don't take it' - my mom of 93 is a physical wreck but mentally still quite with it and is always asking if she really needs the meds she is on. Mom has managed to get her GP to take her off a number of them - to be fair to her - she is doing fine without them, so I guess she is right (in her case) less is more.

I have not yet asked the Memory Clinic for anything - I am going away for a few days next week and won't start OH on anything new till I get back anyway, so still have time to think about it.
 

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