Screaming and shouting for hours on end

[IzzyJ]

Things are really rubbish - a virtual hug would be nice if anyone can spare the time.

Mum's dementia has really accelerated this last year, to the point where she is bedridden and totally incontinent, doesn't recognise anyone or where she is (she's at home, she isn't going into Care come what may). She has always been very articulate and hadn't lost her speech at all even though what she said was delusional. Now even her words are made up so she doesn't make any sense. But she shouts her monologue at the top of her voice non stop, not making any sense, for 18 hours at a time til she exhausts herself as well as her carers. She won't eat, drink or let anyone near her in this state. Then she will sleep for a day before it all starts over again. It is so hard to hear and must be dreadful for her too. Her memantine has been upped but that's all. Does anyone know if this is a phase that will pass too. I'm desperate really.

 

[Cat27]

Sending you a great big hug.
That must be so difficult for you to deal with. What does her GP say?

 

[Izzy]

Hi from another Izzy!

I'm so sorry to read about what's happening. Like Cat I wondered what the GP was saying about it all. Your family can't sustain looking after your mum while she is like this. It may well be a phase but who knows how long it will last? I would certainly be urging your GP to look more closely at this as the rest of you at home will suffer and as a result you will be less able to care for your mum. Does your mum get any support from outside carers?

 

[CJinUSA]

Things are really rubbish - a virtual hug would be nice if anyone can spare the time.

Mum's dementia has really accelerated this last year, to the point where she is bedridden and totally incontinent, doesn't recognise anyone or where she is (she's at home, she isn't going into Care come what may). She has always been very articulate and hadn't lost her speech at all even though what she said was delusional. Now even her words are made up so she doesn't make any sense. But she shouts her monologue at the top of her voice non stop, not making any sense, for 18 hours at a time til she exhausts herself as well as her carers. She won't eat, drink or let anyone near her in this state. Then she will sleep for a day before it all starts over again. It is so hard to hear and must be dreadful for her too. Her memantine has been upped but that's all. Does anyone know if this is a phase that will pass too. I'm desperate really.

It sounds like different medications need to be tried. Even just acetaminophen might help resolve her emotions a bit? I'm so sorry. You can't find a home that would take her, or you want to try to keep her at home? If keeping her at home, perhaps some assistance would give you all a break, if possible?

 

[Izzy]

I've looked back your other threads IzzyJ and I can't see if you have any support or if your are caring for your mum by yourself. Have you had your mum's needs assessed to see if she can get any support from Social Serices?

This link gives you some information on the process - Assessment for Care and Support.

I realise it might be hard to get your mum to accept outside carers but I do feel that you can't go on the way you are at the moment. You can also have a carer's assessment as part of the process.

Please forgive me if you have already looked into this.

 

[Amy in the US]

IzzyJ, I'm so sorry to hear about the situation with your mum. It sounds stressful beyond belief, for everyone.

My only thoughts are:

-get the GP or any doctor or nurse to do a home visit while she is in the middle of one of these episodes, so they can see for themselves what it's like.

-rule out all the usual suspects like a UTI/other infection/a stroke/whatever

-try paracetamol, just in case she is having pain that she can't communicate, to see if it makes a difference (there may be a liquid form you can use?)

-ask for a medication review to see if there is anything that could help; these episodes must be harmful to her health

-get more support for yourself, even if that's a cleaner, sending out the laundry, having groceries delivered, whatever will take some strain off of you

-consider a placement for respite

I'm sorry, those are all of my ideas at present. I will be thinking of you.

 

[IzzyJ]

Thank you so much everyone. Mum hasn't been assessed for nearly a year and probably needs another, but we do have two carers during the day paid by SS. No infection (she has been tested yet again). The GP isn't very helpful tbh, hasn't seen her in one of these episodes, although the CPN did arrive the other day and saw her like it for the first time. She seemed shocked but I don't know if that gets passed on at all. I am just so tired.

 

[IzzyJ]

I think I need to go through everyone's suggestions one by one and try for a medication review in particular. It is just family, with another couple of carers.

 

[fizzie]

Sending you a hug. I would agree that she needs a medication review asap, it must be exhausting for all of you and her as well. It is not tenable you will all have breakdowns and it must be very upsetting for her too. I would just keep phoning the CPN until they send out a specialist doctor who can sort out the meds and you can all have a calmer time although just as demanding. SS will provide up to 4 carers a day for people at home so I would ask for another review and a carers assessment as well to give you some extra breaks.
I'm assuming you get attendance allowance at the highest rate? and council tax discount?

You are doing an amazing job but you do need help desperately. Get on the phone and don't let up until you get an appointment for a visit and don't let them put you off with waiting lists either. This is urgent xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx