If only mum could get a proper night's sleep

[Fiona F]

Your thoughts & advice please! My mum is 90 with AD. I'm wondering if it's worth having a chat with her GP re poss medication to help with increasingly worse hallucinations, & what now seems to be regular middle of the night/early hours episodes of terrible confusion, disorientation, screaming for help, panicking about urgently needing the toilet & not making it in time, the 'people' in her bedroom making sarcastic comments all the time, she doesn't know who she is or where she is...……… it goes on & on (? sundowning but during the night???? I don't know).

She lives close to us but I'm obviously not there in the night so don't hear her 'screaming for help', but she tells me every day that she had another awful night with 'the people', & desperation to get to the loo & screaming for help etc. Sometimes in the morning when I go round she's still in a terrible state or is just coming out if it. I settle her down quietly with a cuppa & breakfast & stay with her until the morning carer arrives. I tell her if she needs help & isn't 'with it' enough to phone me, she should press her Careline pendant or wrist buttons & they will call me. Mind you I don't want it to become a regular thing that I get hoiked out of a deep sleep every night to go round & sort her out!

If only she could get a proper night's sleep without having to get up several times to go to the loo! I'm concerned that if she gets put on medication, it will make her so drowsy she will have a fall if she gets up in the night. She has enough falls already. I can see we're heading for incontinence & going to the toilet has been an increasing issue (almost obsession) for a long time. Would she still be waking up & having these awful episodes anyway, even if she didn't need the loo? I'm not sure what to do as it's all definitely getting worse.

 

[canary]

I would definitely contact her GP and tell them what is going on.

Is it possible that she is waking up in the night/morning and mistaking dreams for reality? Do her neighbours hear her shouting at night?
Either way, she needs help as she is in a bad way in the mornings.

 

[Fiona F]

I would definitely contact her GP and tell them what is going on.

Is it possible that she is waking up in the night/morning and mistaking dreams for reality? Do her neighbours hear her shouting at night?
Either way, she needs help as she is in a bad way in the mornings.

Thanks, yes I'll write to her GP. The hallucinations are definitely not dreams because she sees these people, & bugs crawling all over the carpet, at various times during the day as well & points them out to me. It's just particularly bad at night when she wakes with this awful feeling of disorientation & panic. She lives in a detached bungalow, fully double-glazed, so no, the neighbours can't hear her calling for help unfortunately. Last night she hadn't been to bed but slept on the sofa - she didn't realise she hadn't been to bed, but the bed was very clearly not slept in.

 

[lemonbalm]

Hello @Fiona F . I hope the GP can help with your mum's hallucinations. I assume you've checked that she doesn't have a urine infection? Definitely worth checking if not (and for signs of constipation). Would your mum use a commode at night? When my mum was still living at home, she did agree to use one, along with grab rails on the bed, to reduce the risk of night time falls. I told her that lots of people used them but she did take some convincing. Did your mum have a better night on the sofa, by the way? If so, and it's comfortable, perhaps she could sleep on that for a while. Whatever works, I say!

 

[Fiona F]

Hello @Fiona F . I hope the GP can help with your mum's hallucinations. I assume you've checked that she doesn't have a urine infection? Definitely worth checking if not (and for signs of constipation). Would your mum use a commode at night? When my mum was still living at home, she did agree to use one, along with grab rails on the bed, to reduce the risk of night time falls. I told her that lots of people used them but she did take some convincing. Did your mum have a better night on the sofa, by the way? If so, and it's comfortable, perhaps she could sleep on that for a while. Whatever works, I say!

Thank you. Yes she did have a better night on the sofa actually! Maybe it's better she sleeps there for a while.
I'm pretty sure she hasn't got a UTI, or constipation. She hasn't been tested but I & the carers don't think she has UTI. She's had hallucinations for the past few years, but they've gradually increased. It started not long after she moved house - she said there was always a lady in the bed beside her. We didn't realise before she moved house that she had any dementia at all, but looking back I can see she was in early stages for some time. I now realise that change is not good & can trigger a progression to the next level of dementia.
Mum does have a commode next to the bed but has never used it - she's afraid to use it in case she gets it wrong or forgets what to do. No amount of me showing, explaining & practising how to use it does any good. She just looks totally befuddled. She wears Tena pants too but can't understand or trust them either. I've thought about a grab rail by the bed - we've actually got one that my father-in-law got for my mum-in-law, but it was never used. It fits under the mattress & the rail stands up, but my reservation is that she might get all caught up in it & have a worse accident. I'm just going to see her now so let's see what today brings!

 

[lemonbalm]

Thank you. Yes she did have a better night on the sofa actually! Maybe it's better she sleeps there for a while.
I'm pretty sure she hasn't got a UTI, or constipation. She hasn't been tested but I & the carers don't think she has UTI. She's had hallucinations for the past few years, but they've gradually increased. It started not long after she moved house - she said there was always a lady in the bed beside her. We didn't realise before she moved house that she had any dementia at all, but looking back I can see she was in early stages for some time. I now realise that change is not good & can trigger a progression to the next level of dementia.
Mum does have a commode next to the bed but has never used it - she's afraid to use it in case she gets it wrong or forgets what to do. No amount of me showing, explaining & practising how to use it does any good. She just looks totally befuddled. She wears Tena pants too but can't understand or trust them either. I've thought about a grab rail by the bed - we've actually got one that my father-in-law got for my mum-in-law, but it was never used. It fits under the mattress & the rail stands up, but my reservation is that she might get all caught up in it & have a worse accident. I'm just going to see her now so let's see what today brings!

Adding anything new is always a bit of a worry! Perhaps your mum feels safer in the room with the sofa. I hope you both have a good day.

 

[Fiona F]

Thank you @lemonbalm,
yes I think she does feel happier on the sofa - I've just ben round to see her & she spent another night on the sofa (although she isn't aware that she didn't go to bed). I didn't stay long this morning as the carer was there, so I'm off to get some shopping ? ?& I'll see her again later.

 

[Roseleigh]

Hi Fiona,
Agree with advice to speak to GP, but would also add that as your mum is now experiencing these hallucinations she is also in the stage where she needs near 24 hr care for her own safety.
She probably wants to remain at home but due to her confused state she could easily engage in behaviour that causes her a serious injury, even a fire. The GP can prescribe drugs but the agitation and hallucinations will probably not entirely go away. Would probably be sensible to start looking at local care homes before a crisis situation develops, unless you have alternatives in mind such as a live in 24 hr carer, or are willing to have her move in with you, which will only become harder as her condition worsens.
My husband was like this and he is now in care.

 

[Nomorepets]

Thanks, yes I'll write to her GP. The hallucinations are definitely not dreams because she sees these people, & bugs crawling all over the carpet, at various times during the day as well & points them out to me. It's just particularly bad at night when she wakes with this awful feeling of disorientation & panic. She lives in a detached bungalow, fully double-glazed, so no, the neighbours can't hear her calling for help unfortunately. Last night she hadn't been to bed but slept on the sofa - she didn't realise she hadn't been to bed, but the bed was very clearly not slept in.

You may have done this already. Not sure if too late for a health and welfare POA but if possible do try and get one. Or, if your mother is considered unable to manage her affairs, write a letter from her to your GP with her signature asking that you be given full access to her medical records and can act on her behalf, it's a bit sneaky but I'd be surprised if her GP doesn't accept it. My mother wasn't making it to the toilet at night so I put a comode next to her bed, not ideal but saved the carpets and upset. Worth getting a urine check made as they can cause all sorts of problems.

 

[Fiona F]

You may have done this already. Not sure if too late for a health and welfare POA but if possible do try and get one. Or, if your mother is considered unable to manage her affairs, write a letter from her to your GP with her signature asking that you be given full access to her medical records and can act on her behalf, it's a bit sneaky but I'd be surprised if her GP doesn't accept it. My mother wasn't making it to the toilet at night so I put a comode next to her bed, not ideal but saved the carpets and upset. Worth getting a urine check made as they can cause all sorts of problems.

Thank you, but yes thankfully we've already got both types of POA as she's totally unable to understand let alone manage her affairs. Going back to the time she was initially diagnosed 3-4 yrs ago, I wrote to her GP prior to an appt, expressing my concerns so he had a bit of background info (I made her an appt on the pretext of checking her out following a tummy bug). He had a chat with mum, obviously didn't mention my letter, & I was then called into the surgery to join them & he said they'd had a chat & she agreed she would like me 'in on' her appts & diagnoses etc. I had to act surprised & of course agreed it was a good idea. He said they'd decided to give her an 'MOT' & the various assessments & tests followed on from there. So it's now easy for me to communicate with the GP as the surgery has an online Portal where you can send messages to the GP & he can send messages back - very useful, especially at the moment in lockdown! She doesn't have a UTI I'm sure - this has been going on such a long time & her carers don't think she has either, things are just getting increasingly worse. I wrote via the Portal to her GP recently & he rang me for a chat, & has referred her to the continence clinic & back to the psychiatrist from the Older Persons Mental Health Clinic re trying some other medication. I had phone calls very quickly from the psychiatrist & the continence nurse so had a good chance to explain how things are now. After a blood test, they'll try mum on some Memantine tablets, & the continence nurse will visit when the lockdown's over to go through using the toilet, pads, commode etc. & will send some NHS pads & pants in the meantime for her to try instead of the Tena pull-ups which are quite expensive! She's actually quite excited about it all!

 

[lemonbalm]

Sounds as though you are well on top of things. Good to hear you have such a supportive GP.

 

[Nomorepets]

Gosh, you have been busy, not heard of the Older Persons Mental Health clinic. As Lemonbalm says it's good you have a supportive GP.

 

[Fiona F]

Gosh, you have been busy, not heard of the Older Persons Mental Health clinic. As Lemonbalm says it's good you have a supportive GP.

Yes the GP is very helpful & approachable, thank goodness.
Maybe in your area there isn't such a clinic/unit, or it might be called something else, but here in Southampton we're lucky that we do. I don't know if it's an actual clinic that you can go to, as my mum had home visits - from the psychiatrist in charge, memory nurse, & occupational therapist. She did go to hospital for a brain scan, & the psychiatrist came to see her at home to discuss the results with her & me (diagnosis - Alzheimer's - although she didn't really understand or register what that meant). My mum just loved all the attention & home visits!