Sectioned with delirium - still no progress

[Eaexh01]

Apologies for another thread, I’m getting little support in real life and this forum is all I really have.

So Mum has now been in a psychiatric unit for a month - initially under Section 2 but now DoLs.
She has a diagnosis of ‘delirium’ with associated depression but the cause of the delirium is still unknown and won’t be established until it passes. The psychiatrist has warned this could take months. Organic causes have been discounted but her decline was so severe and so rapid I still firmly suspect some sort of brain damage and even rapid onset dementia. I have been assured she will under go assessment for this.

But I am finding the wait and lack of progress or treatment so difficult. When I visit she cycles between paranoia, verbal aggression, confusion and distress. I literally don’t know the woman sat in front of me who doesn’t recognise me most of the time and says the most terrible things.

I just hate seeing her like this, she is convinced everyone wants to kill her (including me)
but that she just wants to die anyway. She has taken to throwing herself out of bed or her chair as all other means of self harm have been removed! She has lost 3 stone ( actually a good
thing), but now is refusing to eat.
Yesterday she was pleading with me to kill her.
I’m finding it so difficult to listen to even though I know it is part of whatever this illness is. She was started on a very low level of antipsychotic last week but I don’t think it’s made any difference.

I cant believe that she’s been there a month and
there has been no progress or improvement. I know it sounds awful but the thought of having to do these twice weekly visits without any change is terrifying. How much worse can it get?

Has anyone else been through something similar? Would be so grateful to hear of other experiences.

 

[granny shoe]

Apologies for another thread, I’m getting little support in real life and this forum is all I really have.

So Mum has now been in a psychiatric unit for a month - initially under Section 2 but now DoLs.
She has a diagnosis of ‘delirium’ with associated depression but the cause of the delirium is still unknown and won’t be established until it passes. The psychiatrist has warned this could take months. Organic causes have been discounted but her decline was so severe and so rapid I still firmly suspect some sort of brain damage and even rapid onset dementia. I have been assured she will under go assessment for this.

But I am finding the wait and lack of progress or treatment so difficult. When I visit she cycles between paranoia, verbal aggression, confusion and distress. I literally don’t know the woman sat in front of me who doesn’t recognise me most of the time and says the most terrible things.

I just hate seeing her like this, she is convinced everyone wants to kill her (including me)
but that she just wants to die anyway. She has taken to throwing herself out of bed or her chair as all other means of self harm have been removed! She has lost 3 stone ( actually a good
thing), but now is refusing to eat.
Yesterday she was pleading with me to kill her.
I’m finding it so difficult to listen to even though I know it is part of whatever this illness is. She was started on a very low level of antipsychotic last week but I don’t think it’s made any difference.

I cant believe that she’s been there a month and
there has been no progress or improvement. I know it sounds awful but the thought of having to do these twice weekly visits without any change is terrifying. How much worse can it get?

Has anyone else been through something similar? Would be so grateful to hear of other experiences.

Dear Eaexh01, so sorry to read about your situation. My husband has had delirium a couple of times and it is a terrifying condition that completely changes the person suffering with it. It can take a long time for things to get better. Is there anyone on the ward team that you feel you can talk to? I find that nurses or occupational therapists are sometimes more helpful in explaining things than doctors.

 

[jaymor]

My husband spent nine weeks in an assessment unit. It took that amount of time for him to be watched and the right treatment for him to be sorted. He left the assessment unit and went into a nursing home that was right for him. I can’t fault the care and attention he received .

 

[Eaexh01]

Thank you, did both of your husband’s have a dementia diagnosis when the delirium
appeared or was this before?

 

[PMM1485]

Oh my dear that is the same as my situation. Almost a month to the day mum changed almost overnight. She is anxious all the time, angry, so very confused, hyperactive and delirious. I thought it was a UTI but now just been told that the urine cultures all came back normal. So why the massive change? The 'perfect' home we found for her just can't cope and have sent her packing. and seem to hold us responsible for mum's condition.

The worst thing is losing mum so quickly. I call everyday and try to see her a couple of times a week but absolutely dread it. I have no idea what to say or how to deal with the complex delusional scenarios. Going along with the delirium just seems to make it worse. I end of contradicting her which I know doesn't help. She cries and l can't help. She doesn't understand why I just sit at my socially distanced table and seemingly ignore her.

Not sure if it helps, but I really empathise with what you are going through. I just hope each day will be a good one, though my heart sinks when I call the home and they give me the liturgy of that day's problems. Stay strong hun. My heart goes out to you. Xx

 

[Eaexh01]

Thank you PMM
Yes sounds so similar. Mum was sent to a perfect nursing home for respite after several hospital admissions - one I thoroughly researched and came highly recommended. Sadly within a few days she suddenly started becoming distressed, confused and most worryingly self-harming.
Since being in the psych unit, the nursing home have politely told me they are not geared up for mental illness and so she will have to be placed elsewhere.

 

[jaymor]

My husband had been diagnosed 7 years before .

 

[Kimmyx]

Hi there.
I have just registered with the site today, wish I had done it long before after reading so many posts similar to my own issues.
My mother in law started showing signs of delerium after a fall last June, she fractured her pelvis and spent weeks in hospital. Dementia is still not formally diagnosed as it really kicked in at the point of lockdown and all her dementia tests were cancelled. This week she has been so confused and does not recognise her own home, she even got in a taxi to our house whilst We were on holiday and was left abandoned until our neighbour found her. She lives alone and forgets to eat and drink, she thinks people are coming in the flat to eat her food and use her toilet but this is all in her mind. Its so frustrating, we have no diagnosis, no help and we are going round in circles with it. She calks me constantly with her confusion of not knowing where she is, I am worn out and don't have a clue what to do about it.

 

[Izzy]

Welcome to the forum @Kimmyx, I’m glad you’ve found DTP and know you will receive lots of help and support here.

It must be so hard coping with this without any help. I know you said that your MIL doesn’t have a diagnosis It might be an idea to call Social Services and ask for an assessment of needs. Irrespective of what the diagnosis she is clearly vulnerable - the example of getting in the taxi while you were on holiday is a good example. This is fact sheet on the assessment process might be helpful.

Assessment for care and support in England

What are care assessments and how can people with dementia and their carers access them? This information is for care and support in England.

www.alzheimers.org.uk

I would also call the GP and ask if they can help. Keep posting here too,

 

[Kimmyx]

Thank you Izzy.
The Doctor is aware but her constant response is "its just the dementia". The local dementia team still advise they can't do "face to face'"assessments, the CT scan results of 4 weeks ago seem to have gone astray with no feedback/results, we seem to be getting nowhere just returning back to the starting point again and again. Without any official diagnosis we can't get help with her living arrangements which we feel are unsafe. I feel like a nag calling the doctor she makes me feel like I am wasting her time ?.

 

[canary]

Without any official diagnosis we can't get help with her living arrangements which we feel are unsafe.

Thats not actually true. You can contact SS and ask for a needs assessment even without a diagnosis and they will be looking at her needs - whatever the cause. There may be restrictions as to what can be offered without a diagnosis, but they will be looking at her needs.

I know this because OH does not have a diagnosis. There are some things that we cannot access - like the local dementia hub, some day care that will only accept people with dementia and some care homes will not accept him (but that is mostly because he is under 65 yrs old). Nevertheless he has had a needs assessment, he now has carers come in, he will be starting at day care once it is open again and he has had respite in a care home.

Get the ball rolling with SS and also, dont worry about keep badgering the GP - its the squeaky wheel that gets the oil.

 

[granny shoe]

Thank you, did both of your husband’s have a dementia diagnosis when the delirium
appeared or was this before?

My husband had had a diagnosis of dementia for 18 months before his first episode of delirium.

 

[Eaexh01]

This is why the doctors are sceptical about Mum having dementia, she has no history prior to this psychotic episode. But none of it makes sense

 

[Bod]

Mental Illness treatment, was explained to me many years ago, as having to remove all previous treatments, and medications, to allow the person to become "themselves".
Then starting mild treatments/medication, to ascess the changes, then altering medication/dosage to achive the best outcome.
This means that the person usually gets much "worse" as the true situation emerges.
Treatment can at times be put back to square one, if there is no improvement on the current regime.
There are no quick fixes.

Bod.

 

[DesperateofDevon]

Apologies for another thread, I’m getting little support in real life and this forum is all I really have.

So Mum has now been in a psychiatric unit for a month - initially under Section 2 but now DoLs.
She has a diagnosis of ‘delirium’ with associated depression but the cause of the delirium is still unknown and won’t be established until it passes. The psychiatrist has warned this could take months. Organic causes have been discounted but her decline was so severe and so rapid I still firmly suspect some sort of brain damage and even rapid onset dementia. I have been assured she will under go assessment for this.

But I am finding the wait and lack of progress or treatment so difficult. When I visit she cycles between paranoia, verbal aggression, confusion and distress. I literally don’t know the woman sat in front of me who doesn’t recognise me most of the time and says the most terrible things.

I just hate seeing her like this, she is convinced everyone wants to kill her (including me)
but that she just wants to die anyway. She has taken to throwing herself out of bed or her chair as all other means of self harm have been removed! She has lost 3 stone ( actually a good
thing), but now is refusing to eat.
Yesterday she was pleading with me to kill her.
I’m finding it so difficult to listen to even though I know it is part of whatever this illness is. She was started on a very low level of antipsychotic last week but I don’t think it’s made any difference.

I cant believe that she’s been there a month and
there has been no progress or improvement. I know it sounds awful but the thought of having to do these twice weekly visits without any change is terrifying. How much worse can it get?

Has anyone else been through something similar? Would be so grateful to hear of other experiences.

Aged Mother was weeks in hospital with delirium last year , it's awful & the cause was suspected to be UTI....so rehabilitation package & carers put in place & back home via social care - now 12 months plus later the delirium / audio & visual hallucinations are being treated with antipsychotic & she's wandering every day now it seems according to neighbours . Honestly i wish Aged Mother was back on a ward at least she would be safe!
Aged Mothers diagnosis of mixed dementia means we are having to push / fight for every bit of help we have got for her as the GP has been incredibly unhelpful about referring back to Mental Health team ; GP believes it's a social care issue not mental health! wouldn't mind but the GP hasn't seen Aged Mother for over 12 months !!!!

 

[DesperateofDevon]

Thank you Izzy.
The Doctor is aware but her constant response is "its just the dementia". The local dementia team still advise they can't do "face to face'"assessments, the CT scan results of 4 weeks ago seem to have gone astray with no feedback/results, we seem to be getting nowhere just returning back to the starting point again and again. Without any official diagnosis we can't get help with her living arrangements which we feel are unsafe. I feel like a nag calling the doctor she makes me feel like I am wasting her time ?.

Aged Mothers GP made me feel as if i was a fantasist - kept telling me that Mother was fine........... even though i had LPA in 2018 this GP omitted to tell me that Aged Mother had been diagnosed with early stages of dementia in 2014 ! We have had to self refer Aged Mother to Adult Social Services , Clinical Mental Health Team etc all without the support or help of this GP! Shocking !! but hey i'm determined to get funding from NHS / CHC / FNC one way or another just to show all that carers can access help without GP backing !
CQC will be the next contact point - as well as the office of guardians & my local mp.

 

[Eaexh01]

Reading accounts of other people’s struggles to get to a diagnosis makes me feel fortunate that at least my Mum is in a unit and safe. Even though we are no further on with a proper diagnosis or treatment I am able to at least visit, then leave knowing she is being looked after and cared for.

I visited her this morning and faced the usual barrage of aggressive, paranoid accusations but left after the hour up thanking my lucky stars she is not solely my problem and in good hands.

 

[Kimmyx]

Thats not actually true. You can contact SS and ask for a needs assessment even without a diagnosis and they will be looking at her needs - whatever the cause. There may be restrictions as to what can be offered without a diagnosis, but they will be looking at her needs.

I know this because OH does not have a diagnosis. There are some things that we cannot access - like the local dementia hub, some day care that will only accept people with dementia and some care homes will not accept him (but that is mostly because he is under 65 yrs old). Nevertheless he has had a needs assessment, he now has carers come in, he will be starting at day care once it is open again and he has had respite in a care home.

Get the ball rolling with SS and also, dont worry about keep badgering the GP - its the squeaky wheel that gets the oil.

Thank you for your advice, it seems since lockdown all services have backed away from offering any help. The Doctor is useless, the Dementia team offer nothing just tell us they can't do any assessments still, the SS put a carer in twice a day which was without any formal needs assessment because of Covid, but at least the carers can check on her twice a day. We visited this morning, she was chirpy but confused, by 5pm we just had the neighbour call to say she thinks she is in a shop and can't get home, what can we do we can't go on like this, she has no money or home to sell so we can't even get her in a home where she would be safe and fed regularly ?

 

[DesperateofDevon]

Thank you for your advice, it seems since lockdown all services have backed away from offering any help. The Doctor is useless, the Dementia team offer nothing just tell us they can't do any assessments still, the SS put a carer in twice a day which was without any formal needs assessment because of Covid, but at least the carers can check on her twice a day. We visited this morning, she was chirpy but confused, by 5pm we just had the neighbour call to say she thinks she is in a shop and can't get home, what can we do we can't go on like this, she has no money or home to sell so we can't even get her in a home where she would be safe and fed regularly ?

I email the GP/ SS/ Mental health team with each issue. Thank goodness it's email as i couldn't afford the postage stamps otherwise.
Keep pushing on it's hard work but by being a pain in the **** sometimes is the only way to go
?

 

[Eaexh01]

Things seem to be going from bad to worse. Mum has lost a huge amount of weight since being sectioned and now seems to some sort of hunger/thirst strike.
Today she was moved back to the main hospital as they were so worried about dehydration and low blood sugars (she’s diabetic).

I visited yesterday and noticed the paranoia had definitely ramped up. I tried to encourage to have a drink and a few berries I know she loves but she flatly refused saying “they will just punish me” and “they’ve told me it will be the end of the world soon”.

I am so worried, I’ve heard nothing from her psychiatrist for 3 weeks despite leaving several messages and the nursing staff are only able to comment on day to day care.

it really feels that this is last weapon Mum holds to self-destruct or have any control over her life. The delirium is getting worse and no one seems to be helping her.