I don't know anything about this, but short of the long process of POA will Next of Kin be "heard". Someone here might know.
Worried I will miss out on my grandson
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Elderly dad developed psychosis - what are your experiences of treatment plans / diagnosis with this
(39 Posts)Dilemma
My husband has classic Lewy Body Dementia, diagnosed 3 years ago and your father's symptoms seem wrong for this. Most LBD hallucinations are benign and the patient generally sleeps a lot. LBD has links with Parkinson's disease so shuffling feet, hand tremors etc. LBD can only be suspected - the presence of the Lewy bodies requires a post mortem examination of the brain.
Sorry not to be of more help.
I’m sorry to hear that. But helpful to know this extreme psychosis doesn’t fit with your dh experience.
Thank you
I’m in England
Saxifrage
It's not clear what country you are in? My husband has Posterior Cortical Atrophy (PCA). You can read all about it on the Rare Dementia website . He also has very poor eye sight and for the last month or so has been experiencing a lot of psychotic symptoms. He is a patient at the London UCH hospital for Neurology in Queen square. We are waiting for an appointment to talk to them about whether there is any possible treatment for the psychosis. I will keep in touch with you. Please do investigate the POA immediately with a solicitor.
As he doesn’t have mental capacity we can’t get a LPOA. I know process for that as I have them myself.
Well have to go through court for and office and guardianship- there big fees and annual costs, plus can takes weeks. Hence why I was wanting to know experiences of anyone who’s managed to do this
My husband has classic Lewy Body Dementia, diagnosed 3 years ago and your father's symptoms seem wrong for this. Most LBD hallucinations are benign and the patient generally sleeps a lot. LBD has links with Parkinson's disease so shuffling feet, hand tremors etc. LBD can only be suspected - the presence of the Lewy bodies requires a post mortem examination of the brain.
Sorry not to be of more help.
ronib
Can’t comment on the technical aspects of diagnosis and prescribing but thought to say that 10 weeks on a secure ward isn’t that long a time. I have known patients be sectioned for at least a year. One young person made a full recovery and is able to live a good life and the other person has struggled but is home at the moment.
It’s surprising how the right treatment plan can suddenly slot into place after a bit of trial and error. The Nhs does have very experienced psychiatrists who treat thousands of people and there’s a lot of expertise- if that’s a comfort.
For a very complex condition and given his age and possible dementia alongside psychosis, Ronib is right, and that's from younger people I've known - ie length of time.
They've tried the obvious "first ports of call" treatments, and they haven't worked or worked yet. they will be observing and making notes. Diazapam is a good temporary sedative, and if it helps calm him in his own mind and relieves some of the "horrors" he experiences in his own mind, its better than just leaving it?
I'm just guessing here but it wouldn't surprise me if they are waiting for a very experienced expert psychiatrist for elderly/very complex problems. There is often - not always - a waiting time for someone like them. It's heart breaking I know but he is in the safest place for now. In the meantime they are observing and making notes
The only other thing that occurs as I'm not au fait with POA in emergency situations is that it's easier for them to liase with one person not a number of them acting and making enquiries separately.
I don't know anything about the specific conditions you name, but I do know that some - some - not all - of the drugs treating psychosis have an effect on the heart and may be contra-indicated.
It's not clear what country you are in? My husband has Posterior Cortical Atrophy (PCA). You can read all about it on the Rare Dementia website . He also has very poor eye sight and for the last month or so has been experiencing a lot of psychotic symptoms. He is a patient at the London UCH hospital for Neurology in Queen square. We are waiting for an appointment to talk to them about whether there is any possible treatment for the psychosis. I will keep in touch with you. Please do investigate the POA immediately with a solicitor.
Sorry for this very sad situation but as others have said it really isn’t appropriate for us or anyone outside the medical world to form an opinion
His partner sounds charming leaving him to go overseas when he’s in this state
I d get POA for health as soon as possible maybe you need to get a solicitor involved
(I gave both health and finances to my eldest it didn’t take too long)
Poor Dad he must be terrified, interesting he did have a water infection which can start just this sort of problem.
So very sorry to hear of your Father's plight, but this is way beyond the capacity of anyone on social media to advise you about. As you have said, Care Assistants don't have the necessary technical knowledge to advise you either, so focus on speaking to those who are qualified in psychiatric care. You need first hand expert advice, and you won't get it here.
Can’t comment on the technical aspects of diagnosis and prescribing but thought to say that 10 weeks on a secure ward isn’t that long a time. I have known patients be sectioned for at least a year. One young person made a full recovery and is able to live a good life and the other person has struggled but is home at the moment.
It’s surprising how the right treatment plan can suddenly slot into place after a bit of trial and error. The Nhs does have very experienced psychiatrists who treat thousands of people and there’s a lot of expertise- if that’s a comfort.
Hi , yes staff are aware they are not married.
It’s interesting you say this. I’m assuming it’s because eldest next of kin has been involved in the “ big “ decision of him being admitted there.
I think we’re all frustrated that we ( partner and next of kin) have to ask what’s going on and we’re not being proactively told. For instance they switched his antipsychotics and prescribed diazepam without telling us - only knew because partner insisted on seeing nurse ( vs care assistants) and it was then mentioned.
I don’t see how dad could make informed consent to him being changed drug regime? But I’m assuming as no one has POA right now, they’re not obligated to proactively discuss dads medical condition with us? Just telling us if we actually ask the specific question?
His condition is far beyond what we, as mere readers, can advise you on.
You need expert advice.
So sorry for you and his other family members, it is heartbreaking for you all.
I am surprised that his partner is being so involved as they are not married.
This is contrary to what usually happens,
Do the staff know they are not married?
You need to arrange (along with 'eldest next of kin' for a family welfare meeting with his doctor, nurses etc.) - after next week, when his partner has left.
Find out what plans are in place to arrange care for him and what you can do. Is he left in limbo, waiting for a diagnosis that may not materialise? Everyone should list their questions and note the answers given. Make it very clear what you expect by way of progress.
There is care - then there's control. On a locked ward, behaviour control is a necessary evil. It's really not a good environment for anxiety, either - as I'm sure you've noticed. He won't be accepted into residential care so is likely to remain there until his condition changes - unless you take charge and constantly visit for updates and meetings.
After wisdom and experience please ! This is long I’m afraid as didn’t want to drip feed.
My dad ( 86) is now in his 10 th week in an nhs psychiatric assessment centre. There are a few qualified nurses in unit, but most of time he is being se n and observed by the care assistants, who are not psychiatric staff
Mid last year he was registered blind (after years of failing eyesight) and with probable Charles bonnet syndrome. We were aware he had be n increasingly seeing things that weren’t there but thought it was optical issues rather than Charles bonnet.
However his visual hallucinations have become worse and is now delusional, paranoid and hearing voices as well as visual hallucinations. He was taken into hospital as an emerg nay when he spiralled into complete mental hallucinations within a few short days.
The manner of these delusions are incredibly stressful for him. They’re very focused on paranoia to nightmarish proportions involving torture, decapitation etc and he is mostly hugely anxious and fearful. He is also showing morbid jealousy almost daily and some inappropriate sexual behaviours on some rarer occasions. It is, on some days, completely impossible to distract him to the here and now . Some days are a bit better and we can get him to talk about the real world stuff- nothing wrong with his memory
He was placed on a locked ward with consent of his partner and eldest next of kin. And he’s there to get to bottom of what could be going on. I assume this was done under a detention for treatment section 3?
We’ve pretty much ruled out delirium now. He did have some signs of UTI when first admitted to A&E, but were 12 weeks on from that, antibiotics given, and no sign of it now for weeks
I am well adware that his symptoms fit some of Lewy body dementia, but they can’t scan him ( they don’t want to sedate him); so can’t rule it in. I realise they wouldn’t be able to rule it out either though as some don’t show on scans. He doesn’t have symptoms indicating any other dementia from what I can tell on line and observing him. No one has mentioned any other possible dementia other than Lewy bodies.
Right now they’re focusing on psychotic illnesses, with a psychological pathway and treating him with antipsychotics . It has had no effect.
Now I’m pretty familiar, or even have some expertise, with antipsychotics. I’m a chemist and worked for pharma company that made the first in class of these. Plus my ex developed schizophrenia 10 years into my marriage, and I was his carer whilst he was taking antipsychotics for the next ten years . I know they can be actual life savers, but I also know they’re quite “ toxic”. Benefits have to outweigh risks, and I know the elderly are not recommended to take them especially for dementia, or Lewy bodies. There are no proven benefits and a lot of increased mortality. But unfortunately in this country psychiatry seems to want to use on named patient basis quite often. I also know that these drugs, at therapeutic dose, work fast. I’m been given a load of explanations by staff that they take time to come into effect- which as someone who knows the pharmacology of them is a bit bullshit at 10 weeks in, or even 6 weeks. I know from being carer for my ex, that they are powerful drugs and work pretty damn fast in a crisis .
I think the fact he is not responding indicates that his delusions and hallucinations are not driven from the “ dopamine” pathway the antipsychotic medication works on. In other words it’s not a psychiatric bio chemical illness like schizophrenia or phizoaffective disorder. Not surprisingly as there’s only a 2% chance that very late onset psychosis is driven by these up illnesses where there’s no previous history
But he’s still languishing in this secured ward. Still being given these antipsychotics even though they have had no effect. They’re now giving him diazepam “ as needed”, which means they’re dosing him with Valium based on a nurses view of how bad he is.
I want to see the diagnostic pathway and criteria they’re making. How long will they continue to persist with antipsychotics, when will they focus more on Lewy body or even things like acute sleep deprivation- dads sleep has been awful since he developed Charles bonnet, and probably way before that as he was masking it for ages. Have they ruled out stroke brain damage ( a mini stroke 20 years ago led to his blindness) . Have they actually ruled out all other delirium causes?
We’re not being told a lot. I have to go careful as my dads partner is taking the lead ( not married, together 20 years). And the doctors deal with her and not much coming back from her. But the complexity is she is a foreign national and is flying back home to her country next week for next 3-4 months as this is her main residence. I know the medical team can’t deal with random relatives ringing individually to get info, but she has little knowledge, no curiosity and hates any medication and thinks all sorts of random shit are to blame 🙄🤷🏼♀️. She’s even doing the crystal thing 🤦♀️. The eldest next of kin will be taking lead from there glut there’s no power of attorney in place ( there is for finance though 🤦♀️)
So, does anyone have experience of sudden very acute psychosis, Lewy bodies etc and how diagnosis was made? Does what’s happening to dad in being in this ward for so long sound normal? Does the continued prescribing of anti psychotics with no effect sound normal? Any advice on how to go forward to ensure dad is getting right support and appropriate treatment ?
Also, anyone have experience of getting POA once someone is mentally incompetent? I know it’s lng and painful- but any helpful advice,watch outs etc would be good to know, or great websites to use
Thanks
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