Mum shouting, screaming, crying and agitated all the time - is this normal?

[Plisnit]

My mother was living alone last September until she had a fall where she banged her head. Luckily no broken bones and no internal damage showed up on the scan. However, following the fall she, overnight, lost the ability to look after herself, quite a bit of mobility went (she has been disabled since childhood so walking has always been difficult) and also both the ability to make short term memories and much of her long term memory.
She has also been almost continually in tears since then totally aware of the loss of her faculties and her ability to do anything. Initially we tried live-in care, and then sheltered accommodation with extra care, but she was tearful all the time and said she didn't like being on her own so the only option was a care home. About a week before the move there was an incident at the sheltered accommodation when the carers couldn't wake her up and when they eventually did, she found it hard to keep her eyes open for periods of time. She moved to the care home three weeks ago and since then the decline has accelerated. She now always has her eyes closed when I visit, though it doesn't seem to be because of tiredness and it was clear she was listening to what was going on. When I can get her to open her eyes she complains of poor vision. Since moving to the home she has become really agitated and is one of the loudest shouters in the unit - something I have never seen her do before.
Up until the last week I could at least calm her down by talking and looking through photos with her. But for the last week she has been shouting almost continually. Sometimes for me or her mum and sometimes just utter rubbish. She seems very distressed and agitated, though she says she is not in pain. When I ask her why she is shouting she says she does not know why. She still recognises us and she still cries about her lost faculties and asks if she will ever get her memory back. But she evens shouts while I am sitting there holding her hand and can't be calmed by anything. The care home staff are lovely and gentle with her with must be a challenge when she has such challenging behaviour and shouts at them all the time.
It has got so bad that the care home have had to keep her in her room or the past three days because she is causing distress to the other residents. The home did call the GP in on Friday and she prescribed lorazepam to use sparingly to calm mum down, but it does not appear to be having any effect. They have ruled out any UTI, though have taken bloods to test too.
It's extremely distressing to see my mum like this and I feel like I have been lowering my expectations on a weekly basis over the last 5 months to keep pace with the decline.
Is is usual for somebody to be agitated and distressed continually for days at a time? I'm just wondering if this is going to be what it is like for the next however many years we have to live with this.

 

[AlsoConfused]

It might make you feel a little better if you talked to the GP directly and asked her for a lot more information about your Mum's physical health and state of emotional well-being.

Has your Mum had any scan / check following the incident when she couldn't be woken ... if so, what did it show?

Has she had her sight checked by an optician?

Has she been checked for any sign of infection or virus?

What sorts of common problems can the GP rule out entirely?

 

[superstar]

Whether you mum is in a care home or still at home, I would check out her medication, My dad was given different meds which the doctor said it wasn't the drugs read up on them and judge for yourself x


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[Plisnit]

Mum shouting, screaming, crying and agitated all the time - is this normal?

It might make you feel a little better if you talked to the GP directly and asked her for a lot more information about your Mum's physical health and state of emotional well-being.

Has your Mum had any scan / check following the incident when she couldn't be woken ... if so, what did it show?

Has she had her sight checked by an optician?

Has she been checked for any sign of infection or virus?

What sorts of common problems can the GP rule out entirely?

Thanks for your response.
She didn't have a scan following the incident, but her then GP was called. He said he thought that the sleepiness may be caused by Lewy bodies dementia.
I have talked to the new GP but because of the recent move to the care home, this is a new GP and this is the only state the GP has seen mum in. She did think that low sodium. May be the cause and her antidepressant has been stopped. She only has the blood pressure and heart tablets now. The only thing the doctor said may be causing the current state is low sodium or the shock of the recent move. We have an appointment with the consultant psychiatrist in a week so I will be asking the questions then.

 

[Plisnit]

Whether you mum is in a care home or still at home, I would check out her medication, My dad was given different meds which the doctor said it wasn't the drugs read up on them and judge for yourself x


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Thank you. I will do.

 

[superstar]

Dad had Alzheimer's to keep him calm he was on promazine, which we was told the side affects was strokes but what choice do you have as we was keeping him at home, Eveyone is different my dad never took tablets in his life we had to ask for it in liquid form x


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[Bod]

Have you had her hearing checked?
Both for loss, and tinnitus.

Bod

 

[angecmc]

My mother was living alone last September until she had a fall where she banged her head. Luckily no broken bones and no internal damage showed up on the scan. However, following the fall she, overnight, lost the ability to look after herself, quite a bit of mobility went (she has been disabled since childhood so walking has always been difficult) and also both the ability to make short term memories and much of her long term memory.
She has also been almost continually in tears since then totally aware of the loss of her faculties and her ability to do anything. Initially we tried live-in care, and then sheltered accommodation with extra care, but she was tearful all the time and said she didn't like being on her own so the only option was a care home. About a week before the move there was an incident at the sheltered accommodation when the carers couldn't wake her up and when they eventually did, she found it hard to keep her eyes open for periods of time. She moved to the care home three weeks ago and since then the decline has accelerated. She now always has her eyes closed when I visit, though it doesn't seem to be because of tiredness and it was clear she was listening to what was going on. When I can get her to open her eyes she complains of poor vision. Since moving to the home she has become really agitated and is one of the loudest shouters in the unit - something I have never seen her do before.
Up until the last week I could at least calm her down by talking and looking through photos with her. But for the last week she has been shouting almost continually. Sometimes for me or her mum and sometimes just utter rubbish. She seems very distressed and agitated, though she says she is not in pain. When I ask her why she is shouting she says she does not know why. She still recognises us and she still cries about her lost faculties and asks if she will ever get her memory back. But she evens shouts while I am sitting there holding her hand and can't be calmed by anything. The care home staff are lovely and gentle with her with must be a challenge when she has such challenging behaviour and shouts at them all the time.
It has got so bad that the care home have had to keep her in her room or the past three days because she is causing distress to the other residents. The home did call the GP in on Friday and she prescribed lorazepam to use sparingly to calm mum down, but it does not appear to be having any effect. They have ruled out any UTI, though have taken bloods to test too.
It's extremely distressing to see my mum like this and I feel like I have been lowering my expectations on a weekly basis over the last 5 months to keep pace with the decline.
Is is usual for somebody to be agitated and distressed continually for days at a time? I'm just wondering if this is going to be what it is like for the next however many years we have to live with this.

Hi, my Mum has Lewy bodies dementia, it is not a nice form of dementia, their moods and behaviours can and do change within minutes hours or days. My Mum is often very agitated and angry, the mental health team monitored her for around 6 weeks recently and tried tweaking her medications, this helped a bit, she was also put on an antidepressant during this time. However I have to say there is very little improvement in her behaviour. The poor eyesight maybe that she is hallucinating, that is very much a symptom of Lewy bodies sadly, my Mum sees animals that aren't there, the last being a tiger, strangely she wasn't scared of it! Sometimes I think it's the hallucinations that make my Mum agitated. I have also noticed that this behaviour can take on a bit of a pattern, she will be very angry and agitated for a few days and won't sleep hardly at all, this is then followed by a few days of her being very sleepy for much of the time. Mum has also lost a lot of her ability to talk a lot of what she says is gobbledygook, that we can't understand, she gets annoyed with herself and her frustration shows itself in her agitation and anger. Sorry you are going through this, it might be worth asking the care home to request a visit from the mental health team to reassess her and her medication. Take care xx

Ange

 

[Plisnit]

Hi, my Mum has Lewy bodies dementia, it is not a nice form of dementia, their moods and behaviours can and do change within minutes hours or days. My Mum is often very agitated and angry, the mental health team monitored her for around 6 weeks recently and tried tweaking her medications, this helped a bit, she was also put on an antidepressant during this time. However I have to say there is very little improvement in her behaviour. The poor eyesight maybe that she is hallucinating, that is very much a symptom of Lewy bodies sadly, my Mum sees animals that aren't there, the last being a tiger, strangely she wasn't scared of it! Sometimes I think it's the hallucinations that make my Mum agitated. I have also noticed that this behaviour can take on a bit of a pattern, she will be very angry and agitated for a few days and won't sleep hardly at all, this is then followed by a few days of her being very sleepy for much of the time. Mum has also lost a lot of her ability to talk a lot of what she says is gobbledygook, that we can't understand, she gets annoyed with herself and her frustration shows itself in her agitation and anger. Sorry you are going through this, it might be worth asking the care home to request a visit from the mental health team to reassess her and her medication. Take care xx

Ange

Thank you. That sadly all sounds familiar. After four days of constant screaming, shouting and agression she was calmer today, though drugged up on lorazepam. It will be interesting to see what happens when they stop that tomorrow. I've got the consultant form the mental health team coming next week so maybe will get some answers.

 

[Plisnit]

Out of all the people I have come across whilst visiting my Mother in the past couple of years including Dementia wards and Mental Health units, I only heard one woman moaning "help me, help me" all the time. The others were largely quiet.
As the fine advice above, query infection and pain meds and get all the meds reviewed. I have seen probably 50+ people who have been sectioned and none exhibit those symptoms you mentioned during visiting hours that I have seen apart from 1.

Thanks. Your comment gave me the confidence to put my foot down and insist the care home called the GP. I had an idea that pain may be causing the out of character behaviour and they have now given her some medication for pain which has calmed her down a bit.

 

[Plisnit]

Dad had Alzheimer's to keep him calm he was on promazine, which we was told the side affects was strokes but what choice do you have as we was keeping him at home, Eveyone is different my dad never took tablets in his life we had to ask for it in liquid form x


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Thank you.

 

[superstar]

I remember one time my dad saying he had pains in his stomach, he said he'd been poisoned, he wouldn't eat and woke mum up in the night saying he was in pain, so as not to pass it off by saying he's imagining it, we took him to see the doctor, the doctor prescribed, tablets for IBS which he never suffered from, I asked if it could be the medicine, that slowed the Alzheimer's down, he said no carry on with it, after over a week of my dad complaining I decided to stop the medication myself, Dad felt much better and didn't complain again about pain or poison, IBS don't think so?


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[Ludlow]

If you knew that your mother was crying out in physical pain, wouldn't you be insisting that she was given something to relieve it? Why is mental pain regarded differently when we know that the dementia means that there is no way that it can be resolved by the person suffering or by "talking remedies"?

I could not stand by and see my mum so constantly distressed and afraid so I made a fuss until the mental health team were involved. They tried a number of different medications until finally they found one that has almost magically removed the fear and upset. She is still forgetful and confused, but so much more content in herself - and I don't mean she is drugged into a stupor. In fact she is more awake during the day as a consequence of sleeping better at night - no longer lying awake in terror.

My understanding is that GPs cannot initially prescribe anti-psychotics - they have to be started off by a specialist consultant - so I would say get the GP to refer her on.

 

[Onlyme_]

Plisnet, how are things now? I've only just read the full post and replies and it all sounds horribly familiar. My mom is still in a community rehab hospital following a fall, water infection, chest infection, low sodium etc etc. Her dementia is not yet officially diagnosed but it's got a lot worse over the last 6 weeks. Your description of the sleepiness and then agitation sound very similar to my mom's experience. A kindly geriatric consultant explained about Delirium. In my moms case it was triggered by the low sodium (which was they believe triggered by an increase in her anti depressant, Citalopram, medication). She was switching between hyperactive delirium (shouting, lashing out, removing all her clothes, babbling nonsense) and hypoactive delirium (eyes closed, weepy, non responsive). I've been told it can last for weeks and is often responsible for a quick progression in dementia symptoms. I hope things are going ok for you. It's really quite scary how fast things can change isn't it? Sending you positive thoughts x

 

[Plisnit]

Plisnet, how are things now? I've only just read the full post and replies and it all sounds horribly familiar. My mom is still in a community rehab hospital following a fall, water infection, chest infection, low sodium etc etc. Her dementia is not yet officially diagnosed but it's got a lot worse over the last 6 weeks. Your description of the sleepiness and then agitation sound very similar to my mom's experience. A kindly geriatric consultant explained about Delirium. In my moms case it was triggered by the low sodium (which was they believe triggered by an increase in her anti depressant, Citalopram, medication). She was switching between hyperactive delirium (shouting, lashing out, removing all her clothes, babbling nonsense) and hypoactive delirium (eyes closed, weepy, non responsive). I've been told it can last for weeks and is often responsible for a quick progression in dementia symptoms. I hope things are going ok for you. It's really quite scary how fast things can change isn't it? Sending you positive thoughts x

Thanks
It's been a slow process. The psychiatric consultant saw mum and prescribed memantine. We just over two weeks into that and she is calmer, though I'm not sure how much of that is due to the drug, or how much due to the UTI being dealt with.
Mum still spends a lot of time with her eyes closed and there's still quite a bit of shouting out. Though, the aggressions seems to be limited to words "how awful I am to leave her in a place like this" rather than lashing out. The sad thing now is that as she has calmed and seems to be more responsive and more aware, she just seems to be in tears most of the time and seems to be aware of the loss of her faculties. I'm finding it hard to know what to say when I go to see her as anything I say seems to remind her of what she has lost. She has declined so dramatically so quickly that I never know which thing to deal with first- the fact that she has lost much of her mobility, that she is losing weight, that she is unable to feed herself, that she doesn't appear to be able to see sometimes. All I want is for her to have some peace and be able to enjoy something, even for a short time. It's so hard seeing her so tormented.