Night time waking. Any suggestions?

[Greenfingers_girl]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.....