Night time waking. Any suggestions?

Greenfingers_girl

Registered User
May 22, 2022
94
0
Hi we are UK based.

My dad is mid stage mixed dementia (Alzheimer's and vascular). He knows who we are and is able to take himself off for little circular walks without getting lost. But his short term memory is shot and he is also losing/lost a lot of his long-term memory too.

My mum is doing an incredible job with him with plenty of enrichment - jigsaws, chores, walks, music, scrabble, ludo, sorting meds into boxes - but she is heartbroken at watching her soulmate slowly disappear. I have a sister who lives nearby, I live 300 miles away but get up once a month.

After many years of separate rooms mum moved dad back into her twin room after he was getting disorientated in the night. This settled him for quite a few months - other than having to get up to the toilet. However, over the last couple of months he is starting to wake up and wander. He usually starts from 12.30am and mum will be up with him for half an hour before getting him settled again. This could happen another one or two more times in the night. They chatted with the dr re sleeping tablets but the dr advised not to as he would very disorientated.

Dad will have 2 or 3 short naps in the day - without them he will be quite confused by evening time - but mum isn't really replacing the sleep she's losing. Does anyone have any tried and tested suggestions that could aid him getting back to sleep quicker and help mum get a bit more sleep?

Thank you
 

silkiest

Registered User
Feb 9, 2017
865
0
Hi @Greenfingers_girl , my mum was getting up at 2-3 am insisting my dad got up to take her for a shower etc. She also alternated between being very anxious and very angry. Her GP started her on mirtazepine - an antidepressant that also helps the person sleep. She has not been any more sleepy in the day than before but she is getting up at a much more reasonable time now - about 8am.
 

lollyc

Registered User
Sep 9, 2020
947
0
My Mum was up 4,5 or 6 times at night, and I found it very tiring. Like @silkiest , we had success with Mirtazipne (and later, Quetiapine and Lorzazepam, when required.) At that time, Mum was attending various clubs, and these drugs had no effect on her confusion , or her ability to participate. Unfortunately, GP's seem reluctant to prescribe medications for this sort of problem, without any understanding of just how difficult it can be to cope with.
 

Greenfingers_girl

Registered User
May 22, 2022
94
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Hi @Greenfingers_girl , my mum was getting up at 2-3 am insisting my dad got up to take her for a shower etc. She also alternated between being very anxious and very angry. Her GP started her on mirtazepine - an antidepressant that also helps the person sleep. She has not been any more sleepy in the day than before but she is getting up at a much more reasonable time now - about 8am.

My Mum was up 4,5 or 6 times at night, and I found it very tiring. Like @silkiest , we had success with Mirtazipne (and later, Quetiapine and Lorzazepam, when required.) At that time, Mum was attending various clubs, and these drugs had no effect on her confusion , or her ability to participate. Unfortunately, GP's seem reluctant to prescribe medications for this sort of problem, without any understanding of just how difficult it can be to cope with.

Thank you both, that's interesting to read.

You aren't wrong re meds for disturbed sleep. I understand that sleeping tablets can make the confusion and grogginess worse but a lot of advice just seems to revolve around 'good sleep hygiene'. Which is all well and good but dad has regular going to bed and getting up times. He gets fresh air and completes enrichment activities in the day. They say don't nap in the day but if he doesn't then he's quite confused by the evening. It still doesn't help my mum get a decent nights sleep or give my dad deep sleeping time.

I had a look on some other pages re Mirtazipne and there were a couple of comments that the drug made people sleepy and prone to falls. Did either of you experience anything like this at all? Also, how did the drug work with toileting in the night? As a gent dad has had to get up a couple of times in the night - even pre dementia - to use the toilet.

Was it your GP that prescribed? Or dementia specialist? With a history in pharmacy Dad is funny about taking tablets because of side effects and this has remained with him even now. Thankfully we have him on all the tablets he needs for the vascular dementia but he has refused the meds for Alzheimer's and the drs deem him still of sound enough mind to make that decision. Weirdly he was open to sleeping tablets but not sure how he would be with an anti depressant, unless it was packaged as a sleeping aid!
 

Belgrave28

Registered User
Apr 16, 2022
25
0
Thank you both, that's interesting to read.

You aren't wrong re meds for disturbed sleep. I understand that sleeping tablets can make the confusion and grogginess worse but a lot of advice just seems to revolve around 'good sleep hygiene'. Which is all well and good but dad has regular going to bed and getting up times. He gets fresh air and completes enrichment activities in the day. They say don't nap in the day but if he doesn't then he's quite confused by the evening. It still doesn't help my mum get a decent nights sleep or give my dad deep sleeping time.

I had a look on some other pages re Mirtazipne and there were a couple of comments that the drug made people sleepy and prone to falls. Did either of you experience anything like this at all? Also, how did the drug work with toileting in the night? As a gent dad has had to get up a couple of times in the night - even pre dementia - to use the toilet.

Was it your GP that prescribed? Or dementia specialist? With a history in pharmacy Dad is funny about taking tablets because of side effects and this has remained with him even now. Thankfully we have him on all the tablets he needs for the vascular dementia but he has refused the meds for Alzheimer's and the drs deem him still of sound enough mind to make that decision. Weirdly he was open to sleeping tablets but not sure how he would be with an anti depressant, unless it was packaged as a sleeping aid!
My OH was prescribed Quetiapine at night it has made a difference before he was prescribed it he would have been getting up all the time during the night setting the house alarm of sometimes he would have got dressed but since he is on them he sleeps well he would get up through the night to go to the bathroom and then back to bed
 

lollyc

Registered User
Sep 9, 2020
947
0
Thank you both, that's interesting to read.

You aren't wrong re meds for disturbed sleep. I understand that sleeping tablets can make the confusion and grogginess worse but a lot of advice just seems to revolve around 'good sleep hygiene'. Which is all well and good but dad has regular going to bed and getting up times. He gets fresh air and completes enrichment activities in the day. They say don't nap in the day but if he doesn't then he's quite confused by the evening. It still doesn't help my mum get a decent nights sleep or give my dad deep sleeping time.

I had a look on some other pages re Mirtazipne and there were a couple of comments that the drug made people sleepy and prone to falls. Did either of you experience anything like this at all? Also, how did the drug work with toileting in the night? As a gent dad has had to get up a couple of times in the night - even pre dementia - to use the toilet.

Was it your GP that prescribed? Or dementia specialist? With a history in pharmacy Dad is funny about taking tablets because of side effects and this has remained with him even now. Thankfully we have him on all the tablets he needs for the vascular dementia but he has refused the meds for Alzheimer's and the drs deem him still of sound enough mind to make that decision. Weirdly he was open to sleeping tablets but not sure how he would be with an anti depressant, unless it was packaged as a sleeping aid!
Dementia increases the risk of falls anyway - or at least it did in Mum's case - so I can't really say whether it made this worse.
Mum took the Mirtazipine at night to help her sleep, so yes, it does make people sleepy, but that's rather the point! It didn't give her the "hangover" effect that Zopiclone (sleeping tablet) did. We had no ongoing contact with a dementia specialist, so everything was prescribed by the GP. We had already been using pull-ups at night, as she wasn't reliably continent (made worse by a short time on Donepezil).
I think there comes a point when you have to weigh-up which is the least worst option. Yes, the drugs might increase the risk of a fall - but so did many of Mum's heart medications, which nobody seemed to worry too much about - but disturbed sleep is debilitating for both carer and PWD. There is no ideal solution with dementia.
 

silkiest

Registered User
Feb 9, 2017
865
0
Thank you both, that's interesting to read.

You aren't wrong re meds for disturbed sleep. I understand that sleeping tablets can make the confusion and grogginess worse but a lot of advice just seems to revolve around 'good sleep hygiene'. Which is all well and good but dad has regular going to bed and getting up times. He gets fresh air and completes enrichment activities in the day. They say don't nap in the day but if he doesn't then he's quite confused by the evening. It still doesn't help my mum get a decent nights sleep or give my dad deep sleeping time.

I had a look on some other pages re Mirtazipne and there were a couple of comments that the drug made people sleepy and prone to falls. Did either of you experience anything like this at all? Also, how did the drug work with toileting in the night? As a gent dad has had to get up a couple of times in the night - even pre dementia - to use the toilet.

Was it your GP that prescribed? Or dementia specialist? With a history in pharmacy Dad is funny about taking tablets because of side effects and this has remained with him even now. Thankfully we have him on all the tablets he needs for the vascular dementia but he has refused the meds for Alzheimer's and the drs deem him still of sound enough mind to make that decision. Weirdly he was open to sleeping tablets but not sure how he would be with an anti depressant, unless it was packaged as a sleeping aid!
Hi I discussed the problem with both the GP and Admiral nurse. The GP was initially going to try a normal antidepressant to address the anger/ anxiety but SSRI's such as citalopram are contraindicated with her other problems. The admiral nurse advised Mirtazepine from the start and GP finally agreed. I would say mum was a little sleepy for the first couple of days during the day bit she settled after that.
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
Thank you all.

Dad just seems to be wakeful rather than anxious or agitated during the night at the moment, so I wonder if Mirtazepine may be the conversation to have with the GP or Admiral nurse for now.

Thanks for your advice everyone, really appreciated.
 

KatyKat

Registered User
May 8, 2022
111
0
Hi we are UK based.

My dad is mid stage mixed dementia (Alzheimer's and vascular). He knows who we are and is able to take himself off for little circular walks without getting lost. But his short term memory is shot and he is also losing/lost a lot of his long-term memory too.

My mum is doing an incredible job with him with plenty of enrichment - jigsaws, chores, walks, music, scrabble, ludo, sorting meds into boxes - but she is heartbroken at watching her soulmate slowly disappear. I have a sister who lives nearby, I live 300 miles away but get up once a month.

After many years of separate rooms mum moved dad back into her twin room after he was getting disorientated in the night. This settled him for quite a few months - other than having to get up to the toilet. However, over the last couple of months he is starting to wake up and wander. He usually starts from 12.30am and mum will be up with him for half an hour before getting him settled again. This could happen another one or two more times in the night. They chatted with the dr re sleeping tablets but the dr advised not to as he would very disorientated.

Dad will have 2 or 3 short naps in the day - without them he will be quite confused by evening time - but mum isn't really replacing the sleep she's losing. Does anyone have any tried and tested suggestions that could aid him getting back to sleep quicker and help mum get a bit more sleep?

Thank you
Mum's GP prescribed quetiapine for her nightmares and paranoia. Before she started taking it, she would be up all hours of the night and into mischief about the house -- in a panic and throwing things about. I found quite a mess there on some mornings, and it took more than a month to clean it all up. Mum still has daytime paranoia but says she sleeps fine now.

Sleep disturbances are common with dementia, I've been told. It's a matter of finding the right bedtime med.
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
Progress. Mum chatted with an Admiral nurse who suggested Melatonin rather than Mirtazepine this time. However, when she called GP - who had never heard of Admiral nurses?! - he prescribed Lorazepam 0.5mg. Didn't think GP's prescribed benzos for dementia? Anyway, mum went on Wednesday to get the script only to be told she couldn't get it till Monday due to Jubilee. Had her in tears at 6.30am yesterday morning after another terrible night with dad who is hallucinating and almost 'fit' like, it's really scaring her and she has finally reached her breaking point.

We got onto 111 yesterday and managed to get her a prescription for the weekend. She gave dad a tablet last night but he was up at 11.30pm wanting to go home and angry. That was the only time other than going to the toilet but it's still one time too many. I've told her we're calling the GP on Monday morning to review the meds.

Does anyone have experience of Lorazepam? Working or not working? If not working what was the GP's next suggestion? Thanks
 

lollyc

Registered User
Sep 9, 2020
947
0
Progress. Mum chatted with an Admiral nurse who suggested Melatonin rather than Mirtazepine this time. However, when she called GP - who had never heard of Admiral nurses?! - he prescribed Lorazepam 0.5mg. Didn't think GP's prescribed benzos for dementia? Anyway, mum went on Wednesday to get the script only to be told she couldn't get it till Monday due to Jubilee. Had her in tears at 6.30am yesterday morning after another terrible night with dad who is hallucinating and almost 'fit' like, it's really scaring her and she has finally reached her breaking point.

We got onto 111 yesterday and managed to get her a prescription for the weekend. She gave dad a tablet last night but he was up at 11.30pm wanting to go home and angry. That was the only time other than going to the toilet but it's still one time too many. I've told her we're calling the GP on Monday morning to review the meds.

Does anyone have experience of Lorazepam? Working or not working? If not working what was the GP's next suggestion? Thanks
Mum had Lorazepam on an as-and-when basis, on top of regular Mirtazipine and Quetiapine. I did find it useful if she was particularly agitated, but on the whole the other 2 in combination worked reasonably well.
Incidentally, both had to be adjusted as things worsened: we started with 15mg Mirtazipine, then 30mg, then 45mg (max dose), as things deteriorated. Quetiapine went from 25mg, to 50mg, to 100mg.
I would go back to GP - and keep going back - until you find something that works. Many do not seem to understand how difficult this is to deal with (and for PWD), and don't treat it in the same way as a physical problem.

We don't have Admiral Nurses round here, so that's at least one thing in your favour.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
If this does not work the GP might be amenable to referring your dad to the Community Psychiatric Team who are more used to the kinds of medication that can help.
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
Thanks all.

Mum has been given dad it on an ad hoc basis and he seems to be sleeping better again, which is great news but I know will probably only be temporary as things progress. Just a day at a time.....
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
If this does not work the GP might be amenable to referring your dad to the Community Psychiatric Team who are more used to the kinds of medication that can help.
Thanks canary

The GP doesn't seem to be amenable to much! Lorezapam keeps being upped and no GP at the surgery seems to have heard of Admiral nurses!?
They also aren't aware of anti-depressants being used in conjunction with dementia. No referral made to memory clinics as the waiting list is so long so instead a Question to Specialist has been logged instead.

There's no Admiral nurses in mum and dad's area so chatted on the phone

Called Bupa - no spaces for referral to specialists till early December
Called Nuffield - no spaces for referral to specialist till end of October

It's all a bit desperate now
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
Dad's night time hallucinations have been increasing over the last month and the Lorezapam only seems to work on an ad hoc basis, which is no good for either of them and creating a lot of anxiety and stress. The other night mum found him hiding behind the dining room table scared.

Progress with the GP.
Had an assessment with their usual GP on Tuesday, who finally prescribed Mirtazapine half a tablet and referred his back to the memory clinic.

GP advised to give mirtazapine early evening but it knocked dad out so quickly he was in bed by 9pm!! Other than toileting he slept through the night though did say he was tired in the morning but didn't seem any more sleepy than before.

Downside was that mum said he was quite wobbly and disorientated on his first waking for the loo so I've said put a commode in their bedroom so there's less to walk than going the bathroom.

They're supposed to be coming down on a coach trip on Sunday, as yet mum is unsure whether it'll happen but I'm reassuring her we have contingency plans in place in case it doesn't work out when they get here. I think a change of scene is so important for her and the thought of her not coming had her in tears earlier today.

Thank you to you all on this forum who reply and support, in our hours of need it is so appreciated. This is a worm hole I would so rather not be going down but it makes it a lot easier with your suggestions and experiences.
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
I think a commode by the bed is a good idea - we had that for my mother until she became bedbound and used pads. I just wondered, no experience of this with someone with dementia but would a male urinal be any use to save him getting up? Potential for spillages though I imagine.
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
I think a commode by the bed is a good idea - we had that for my mother until she became bedbound and used pads. I just wondered, no experience of this with someone with dementia but would a male urinal be any use to save him getting up? Potential for spillages though I imagine.
Thanks Nita

He preferred to go to the bathroom last night and wasn't wobbly at all, I know this may differ some nights. Male urinal is a good idea and I think as the disease progresses is certainly something we'll move towards.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
It's early days for the new drug - often these things can take a few weeks before a pattern is established. Ditto any side-effects - these can also be temporary so if possible, give it a little time.

But your mum has reached carer breakdown, now, hasn't she? The fact she cried at the thought of not coming to see you, be with you and get help with your dad says a lot. I think she's pretty desperate now, probably more than she will actually admit to, so that's the next thing to be addressed. Can you get your father into respite care for a couple of weeks, to give her a proper break and allow you all to discuss what happens next? You know that a care home is on the horizon but that isn't a bad thing! People with dementia often need 24/7 care as things progress and a care home can provide that. Your mum can't. If your dad moved to a home, your mum could go back to being his wife when she visits rather than a stressed, exhausted carer. Her health and quality of life are just as important as your father's.
 

Greenfingers_girl

Registered User
May 22, 2022
94
0
It's early days for the new drug - often these things can take a few weeks before a pattern is established. Ditto any side-effects - these can also be temporary so if possible, give it a little time.

But your mum has reached carer breakdown, now, hasn't she? The fact she cried at the thought of not coming to see you, be with you and get help with your dad says a lot. I think she's pretty desperate now, probably more than she will actually admit to, so that's the next thing to be addressed. Can you get your father into respite care for a couple of weeks, to give her a proper break and allow you all to discuss what happens next? You know that a care home is on the horizon but that isn't a bad thing! People with dementia often need 24/7 care as things progress and a care home can provide that. Your mum can't. If your dad moved to a home, your mum could go back to being his wife when she visits rather than a stressed, exhausted carer. Her health and quality of life are just as important as your father's.
Thanks @Jaded'n'faded, your advice is appreciated.

Good news and bad news. Dad had great nights sleep on Saturday night so they hopped on the coach and headed 300 miles down, stopping in a hotel about half an hour away from us (they were on a 5 day coach trip). Sadly Sunday night Dad was wakeful even after his Mirtazapine and Lorezapam but we ( one of my sisters lives near me) spent the day with them on Monday and had a lovely time, planning to catch up with them for dinner every night of their stay. But at 1am on Tuesday morning we had the hotel on the phone that my dad had pulled the room apart and my mum was in reception, quite shaken. The hotel night staff were amazing and when we got there my dad was calm and had helped the lady put the bedding back on the beds. I went in with him while my other sister and my mum stayed in another room for the night.

My dad wasn't aware that he had reacted with my mum like that (I don't know what the trigger was as she had only asked him if he wanted to get into his pjs), he thought it was someone from the hotel. He was quite awake so I sat with him on the bed, stroking his arm then gradually tried different things - got him to get in his pjs, went and sat on the other bed, lowered his pillows, made him some decaf tea, turned off the main lights, did lots of yawning! Eventually got him to sleep at 3am and waited until 4.30am for the first toilet stop. He got cramp at 5am then was sound asleep till 6.30am. My mum and sister came down then we packed them up and I drove them home yesterday. We now know that his days of over night stays away from home are over as he is too agitated and confused.

My other sister, who lives locally to them, is away until Friday so at the minimum I'm here till Saturday as I'm not leaving mum alone. Dad slept a good amount in the car back, mum did too, much needed. We had dinner then went for a little walk only for my dad to have a melt down when we got home. It was our fault, he put the key somewhere unknown when we returned and the resulting key searching activity agitated him to the point where he was off out the house to go and see the neighbours with the only spare key! The neighbours are great and very supportive. He was mortified when he got back into the house not knowing why he behaved like that and wanted to apologise to the neighbour - which he did today. But after calming down, supper, Mirtazapine and Lorezapam and 40 minutes of James Galway later he was yawning, in bed and (other than a trip to the loo) was asleep till 7am. More importantly so were we!!

Today, he's been hard work. But from the point of duracell bunny energy and not one nap! We got him yawning early evening doing crosswords but after returning to him from a 15-minute walk with mum for some fresh air, he was obsessed about returning to his old family farm in Ireland tomorrow. He's had his Mirtazapine and Lorezapam and was still wired, even after another 40-mins of James Galway!! Mum's got him into bed and I'm waiting up till I can hear him sleeping (very thin walls!). Even if he is asleep, I have a feeling it will be the theme of the day tomorrow.

I contacted a private carer company regarding waking carers, while we were waiting on the last GP review. I asked mum on Monday, if she had a decent nights sleep could she cope with the day stuff or had she had enough, she said she could. But we know that this is a situation for regular if sometimes daily reviews, I try and research as much as I can but mum can be reluctant at the start to implement or follow up anything I suggest, so things can get very delayed. I know she won't go for respite care, even at this point.

@Jaded'n'faded I know what you say is true, that a care home is on the cards at some point, perhaps sooner than we like. But also like you said, we'd really like to try to give the meds a chance to bed in and keep him in his safe space for them to do this, at least for a while longer. The private carers business website said it can take some time to set up so I'm trying to encourage mum to start the process sooner rather than later. But I know Dad will be furious when he finds out, then she'll have the guilt of having to deal with that.

I don't know how she does it. She's an active 80 and I'm an active 50 but already knackered, if only from the stress of the last 48 hours. I used to think I was quite good in a crisis but this disease is another beast entirely! Professionally I've experience with difficult situations and characters but there's no training or manual for this, no reasoning or rationalising or time to be complacent - blimey I thought the perimenopause was bad enough.....

Apologies. I'm typing this whilst waiting till I hear them sleeping. I know this is a page of ramblings, just need to get it out. Famous last words but all has been quiet for an hour.... off to bed
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
I'm relieved you are there to protect and support your mum. It may be your dad's 'safe space' but it isn't for your mum. I really hope the meds start to make a difference. Meanwhile, you're doing a wonderful job in a very difficult situation - you, your mum and your siblings all deserve medals...!
 

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