How long does the screaming and crying stage last?

[SinisterBumFacedCat]

My DM who is only 67 is probably about 5 years into early onset Alzheimer’s and is in a state of anxiety, probably has a history of anxiety before dementia, looking back. I’ve had to move her from her last home because they couldn’t manage her. Sometimes she is sleepy but today it was awful, she was screaming and crying even when I hugged her. She was like a frightened little girl, it was awful. I know the upheaval of a new home is probably not helping, the new place is a big improvement and the staff seem more competent and engaged with her. She is refusing her medication that doesn’t help. It was really horrible, I feel guilty leaving her. She’s probably stage 5 or 6. How long does this screaming/crying last?

There's no set time frame I'm afraid. I would suggest she has a review by her GP and/or mental health team if she's under one as these symptoms of dementia can often be managed well through advice and treatment plans by specialist teams. But first of all they will want to rule out there is any physical health problems contributing. But your right, the move is probably the biggest contributory factor.

I am so sorry you are going through this, sounds very tough to deal with.

Not sure screaming/crying is a typical phase but sounds more like her anxiety is out of control and she is scared with what is going on with her.

Is she refusing all medication or will she try liquids do you think? It’s worth speaking to home manager and doctor to get a review of her care. It may be that the staff are better at caring from her at her new home and she just needs time to settle.

There is a mechanism for covert administration of drugs so hiding them in food. It's been a while since I've been involved but I think it's the mental health / psychiatrist team that can give agreement to this being necessary.

Great that the new home are able and willing to support her more. I would definitely disucss with them and see about a GP and or mental health / dementia team referral. Home should known what services are available and which professionals they have found most helpful in the past.

Then try and think about what either seems to start the screaming? Is it personal care, change of routine, different people, or even possibly environmentment like like ligting or strange shadows or noises ( this isn't always obvious and takes time so making a diary can help). The other side of this is thinking about what seems to stop the crying out.

My gut feeling is often agitation and crying out can be boredom and anxiety as you said. So finding a way of including someone in an activity that makes them feel connected helps ( although when emotions have escalated it's hard to bring them back down to place a where someone can engage).
Would music work?https://www.playlistforlife.org.uk/

The upheaval of the new home isn't just 'not helping' it's almost certainly the cause. How long has she been there?

My MIL couldn't even be in a room she hasn't been in before. Any change of environment was absolutely terrifying for her.

I know move has certainly unsettled her, but I had no option. She screamed and cried in the last home, until she was told to leave. I took a dementia radio in yesterday and the music calmed her for a bit then she started again. I don’t know if she is capable of activities, I try picture books etc but she is disengaged. She has glasses. She used to scream in the middle of group activities in the last home which led to her being alone all the time. Mental health want her to settle in before they review her medication, which I understand but doesn’t take into consideration her refusing medications. She is distraught it’s horrible. This disease is beyond cruel.

@SinisterBumFacedCat please don't feel guilty for the move, you obviously had not choice and it is what it is. I think, depending on what medications she was on previously then covert medications, even for a temporary period may be required if she's consistently refusing them and they are life saving or absolutely necessary medications. Gp's can sort this along with a pharmacist.

She’d need to be sectioned for that

you can’t give medication to anyone covertly unless they’re considered to be a danger to themselves or others and have cognitive impairment

my exh was under critical care team for psychotic illness. Stopped taking his meds. His choice, even though it would result in him going into crisis. And make him a danger to others. But he was never sectioned . So his choice. And my choice to divorce him because-of this

dad has Lewy body dementia, he has to consent to most meds for them to give even though he IS on a 117 section order. There is only one medication they can give under 117 order without consent, under psychiatrist oversight and that’s for calming him down when he becomes agressive or very agitated and it stops being safe for staff to attend his basic care thst could harm him to. And yes they do try to hide it in food if he won’t take it voluntarily when needed. Everything else is by consent.

medical staff are extremely wary of consent and the law is clear, they have to assume consent can and should be given until proved otherwise with section order.

It’s bloody awful isn’t it.
as others have said there is simply no way of knowing. And to say it bluntly, there is nothing you can do to stop it.

moving may have unsettled her. But maybe not. Her brain is changing and it doesn’t do so progressively or linearly - this could have happened in same place as she was anyway. You don’t know. No one does.

my dad has LBD and had the most awful delusions and visual hallucinations. He was agressive, belligerent but mostly so scared and fearful. Some of stuff was awful both violent and sexual. He attacked staff, damaged property and was walking into female patients rooms trying to pull them out of bed in the night.

he is still delusional and still hallucinating but it has become over last 12 months, more benign mostly. He currently is crying and shouting because he thinks he is trapped in burning building. seems to be playing out in his head for last few weeks. But it won’t last and will move to other things. He is now at last stage and end of life, but the delusions and hallucinations remain. Sadly they may never go away

Over last 20 years, due to caring for husband with psychotic delusions, as well as dad, I have a theory that these delusions and hallucinations are a form of sleep disorder. It is like the brain can’t switch off from a dream state. (I’d andd there’s some evidence of this as LBD particularly affects REM sleep) . And like most dreams/nightmares it is the brain playing around at extreme ends with a benign memory or thought. So almost all Dads delusions and hallucinations are based on some figment or element of reality. The burning building stuff is probsbly being triggered by memories as a child of being in the blitz and in bomb shelters and also being in a fire as result of that. He also obsessed and had delusions about being in huge debt to gangsters who were torturing him- it was was probably based on a loan his partner had given him and he felt he could not pay back if they split as he decided she didn’t love him anymore. There’s always a shit load of things about travel , planes trains catastrophes - but that’s because he spent huge time travel by air and is a complete steam train nerd. He’ll always be thinking about trains ! It just gets all messed up like a nightmare will .

and just like a dream or nightmare there’s little memory of that fear or even those thoughts when they “wake” into a more “present state”.

i find just trying to think about what could set off dads “dream” and then talking to him to reassure him on that ..” dad you don’t have to be afraid of the the fire, thst wax when you were a boy and that’s all in past”, or “dad, don’t fret about money “ “partner loves you”….it sometimes helps to stop the panic and fear …sometimes not. So maybe by trying to figure out what’s behind the crying and fear may help you reassure her and calm her. But don’t be under any illusion that it be temporary and will come back again and again,

You can’t stop these dream like states. No one can. Some meds may help. So it’s important to keep pushing for psych assessment, dad eventually was sectioned and is under a 117 which is the BEST thing that happened to his care. It really focused resources on his needs. And is ensuring he gets top level of actual nursing rather than just struggling in a care environment.

Don’t feel guilty. No more than you’d feel guilty if she had a bad dream. Sooth and reassure, but not anything you did or can do.

you need to make time for you. I have had times when I have driven home (2 hour drive one way for me) where I have had to stop and cry. Days when I have been truely shocked by his state. I have had times when it seems it’s a bloody miracle he still alive and all the guilt of feeling that is maybe not a good thing. It is hard. But you need to find space to process this. And then to relax knowing you are doing best you can in face of an extraordinary grotesque illness.

You do not know that and you are making a massive assumption

op has stated mum was already having this behaviour and previous home couldn’t cope hence why she was moved

dementia is not a linear progression. People can get worse suddenly, then a bit better…you have no evidence that she would have been different if she’d stayed put

it is unhelpful to use a correlation as a cause. Given science is still at a basic level in understanding anything about dementia, let alone what causes these distressing delusions and hallucinations as the plaque or Lewy bodies develop, you are not qualified to state “almost certainly”.

for your MIL, changing environment clearly had a big impact and thst probably was helpful to you as she settled in . But that was your MIL specifically and how she responded will be affected by her own memories, experiences and personality, But that doesn’t mean it applies to everyone with dementia.

My dm stayed in the same flat she'd been for 10 years but because of the dementia no longer recognised her own home and my DF was the same, so please don't feel guilty for moving her. It's a horrible disease which completely changes someone's personality.

It's good she's now in a home who will care despite her behaviour.

I agree with pp, there is no timeline, everyone changes at a different rate.

Interesting comments about covert administration of medicines. In my experience, it is not necessary for someone to be sectioned first.

My mum was very challenging when she went to live in a care home following a period of falling over and leaving her house in the night to wander the streets. Her care home was only for residents with dementia so was very experienced and knowledgable about engaging with appropriate agencies.

When mums behaviour became very unsettled and she began to resist any personal care, fighting with the carers and even biting her doctor, they referred her to an NHS specialist team for assessment and a review of her medication. This was done in the care home but they did have a short stay assessment ward they could have used. It was the doctors here who suggested covert admin of medication with our permission ( thro our POA), mum was not sectioned and there was no mention of it being necessary.

Fortunately Mum did not get so bad that the home wanted her to leave, they actually liked her as she was feisty and had a good sense of humour - as long as she felt she was independent and not being messed with - personal care was always difficult! They seemed to find ways to distract and calm her by focusing on her love of football and going to matches, if they got out her Manchester City scarf and played a dvd of their matches, she was much more cooperative! I guess it reminded her of going to every home match for about 60 years with my dad and then my brother.

They also used cake as a means of distracting her, mum had been a fantastic baker and always enjoyed eating cake so if she was objecting to having a dressing changed, a carer would sit down and eat cake with her while another sorted out the dressing or whatever.

When she died, a couple of staff came to her funeral wearing City scarves ( we had draped some over her coffin) and at the home, all the staff who had cared for her had an afternoon tea in her memory.