Elderly dad developed psychosis - what are your experiences of treatment plans / diagnosis with this

Should add, dads relationship with partner started after Mum died. We’d long since left home, become independent and families of our own. Hence why, when he started spending most of his time in her country, Ive never really known her to or their relationship- I’ve only met her 4 times or something like that in 20 years! I’m exchanging a lot of updating emails with her after my visits currently though . Dads never been best at making the efforts to stay in regular touch, except with eldest as he was one doing stuff for him back home.

Hi, there’s some friction but not relationship issues as such. Us siblings have good relationships but haven’t been in this situation before so it’s fiction in terms of all coming at it with different perspectives and experiences.
Currently it is working by us all essentially treading the water around each other. Im being careful not to set eldest NOK back up by asking or “interfering” too much in case they imply we think they’re not doing what they should. And they also are reticent in “rocking the boat” with the nhs teams for worry it’ll just piss the team off if we make things difficult and try to interfer too much.
Clearly my experience of nhs mental health services is that you HAVE to ask and raise issues to make any progress and you can do that without pissing the teams off.

But As this NOK has always taken the lead re dad out of all of us, that’s the pattern that’s been established and needs careful negotiation to change- I don’t want them throwing in the towel 😱. I’m very grateful they have supported dad all these years and taken that burden mostly on their own just because dad asked them,
.
We ARE having a “family conference” with just us siblings in a few weeks at earliest point wecould because I pushed to have a time we could talk through are differing perspectives face to face . And it’s partly why I posted to gather some wider perspectives and experiences to add into that discussion. I’m already gathering questions to throw into mix when we get together. Normally we’re all pretty good at communicating - I just think we need a dedicated time to get it all out there and figure out how to work together now in this new situation.

I think quite rightly while partner was here we treated her as main decision maker as we feel that what’s dad would have wanted. Eldest NOK has been supporting her and main contact as they simply knows her way, way better than the rest of us . Practically that can’t continue once she leaves, if she’s trying to do it by phone and glean info on dads condition from our visits we’ll all go bonkers including mental health team. Hence why it’s only just coming to a head now.

I don’t think family counselling is needed right now. I had experience of it through being with Ex and our children dealing with it as teens- . NHS has very limited services and I had to push for it, and got just a few sessions with someone who’d never done it before. Not helpful for any of us, So a bit jaded.

It’s a fair point though

Please don’t misunderstand me but I am beginning to think there seems to be a fair bit of friction/conflict in the way your family interacts?
I don’t know if you might find it helpful to have some family counselling? It doesn’t help an ill person when the family is not pulling together. It’s not a criticism just a thought.

For those mentioning partner returning to her country

Not sure when she’ll be back, she has to go back to comply with immigration rules etc. as much as anything.

My dad has (had?) right to remain in her county and up until few years ago that’s where they were mainly based. But plan was always that she would become resident in uk and live here when they got old (probably cos of NHS tbf which is an irony given state of nhs now) . That just never seemed to happen. But I don’t know the in and outs as I barely ever met her and don’t know her or hers and dads relationship at all. As I say, he was out of the country so much until Covid hit.

Personally, as someone who lived with ex for 20 years with psychotic illness, I’m probably better placed than most to know the dreadful impact it has on your relationship, intimacy and trust. Especially when stuff like delusions around morbid jealousy appear and it can get frankly abusive. So, no, I don’t think she has to stay , dad is actually not very nice to her right now a lot of the time. But it’s more that although she’ll go back, she’ll still want to be involved in his care and know what’s happening, want to drive things etc, which makes it a massive amount more complicated for everyone. Especially as they have no legal relationship - her choice not dads.

Shelflife

Dartwarb, I have no experience of this so can only imagine the horror you and your father are experiencing. It is horrendous!! I am horrified to learn about the room he is living in - conditions there are very poor. You must feel absolutely helpless , his partner returned to her own country,!? When will she return?
Wish I could help with advice , I think the suggestion of a family meeting with medical staff is your best option - is that a possibility? Your poor father he must be terrified!! I won't forget your dilemma, my thoughts are with you and your father. Just push for what you feel is the correct course of action, easier said than done t know that. Keep in touch with all the lovely people here and I hope that goes some small way to easing your distress.💐💐

I think the big takeaway for everyone to remember is get a LPOA

luckily, I was advised of this 20 plus years ago, when my ex become mentally ill. We then updated to LPOA when they were introduced and sadly, yes, I have had to invoke in past. I have quite a lot of detail referred in mine, but even I will be revising that part as result of seeing what dads going through.

Germanshepherdsmum

When I was a solicitor in local government one of my duties was to apply to the Court of Protection for the council’s chief finance officer to be granted what is now known as deputyship for people in the council’s homes whose assets had to be sold to cover their fees and there was either no family or they weren’t interested. Annual statements of the person’s income and expenditure were required and, quite rightly, the court monitored these carefully. This was many years ago and I don’t have more recent experience of the system but the court is approachable.
You say the next of kin had a power of attorney for financial matters - if this was an enduring power of attorney (the predecessor of lasting powers of attorneys) it will still be valid if your father hasn’t revoked it. He is of course obliged to act in father’s best interests. What other family members might prefer is irrelevant.

Yep, it is enduring POA, and yes it is still valid and being used to keep bills running (thankfully there’s something there), but Dad put it in place to be used while he had mental competency so the eldest NOK could run his financial affairs whilst Dad was out of the country. The attorney also took on a lot of managing the house maintenance for my dad- making sure gardeners came, window cleaners, cleaning etc and fixing stuff whilst he was residing here.
It’s become over the years a bigger burden as dad spent more and more time back here with various ailments and then Covid lockdowns. He has needed more practical help and he’s assumed the eldest NOK will step up to be at his beck and call. So it’s carried over now into basically the realms of health and welfare attorney- but there’s nothing legal written, just a default delegation. That’s put a lot of pressure and tasks on one sibling alone, and they do struggle with that burden, yet are reluctant to take action to put something in place to spread the load as they see it as not something Dad expressly asked for

basically Dad put enduring POA in place to help him whilst he was younger and mental all over his affairs, just not there physically. He never ever has considered the possibility that at some point in his life he may not have mental capacity and has refused to ever discuss that . Sadly not atypical I think given number of people that don’t have LPOA.

I’m very conscious of not treading on eldest NOK toes, and pushing things with respect to health and well-being like just calling doctors myself. But it’s silly- eldest NOK is still working full time, whilst I’m retired and have more time to chase, make calls and contact during day when teams are available. I’m also not close geographically- so regular multiple time per week visits are also falling on same person. I’m going around once every 10-14 days, I could go more if it wasn’t burning though petrol and it’s 4 hours driving in a day with a bad back. So, I’m also a bit holding back, as I’m a bit hypocritical to demand “access” direct to care teams when I’m not there every other day, 🤷🏼‍♀️

Dartwarb, I have no experience of this so can only imagine the horror you and your father are experiencing. It is horrendous!! I am horrified to learn about the room he is living in - conditions there are very poor. You must feel absolutely helpless , his partner returned to her own country,!? When will she return?
Wish I could help with advice , I think the suggestion of a family meeting with medical staff is your best option - is that a possibility? Your poor father he must be terrified!! I won't forget your dilemma, my thoughts are with you and your father. Just push for what you feel is the correct course of action, easier said than done t know that. Keep in touch with all the lovely people here and I hope that goes some small way to easing your distress.💐💐

When I was a solicitor in local government one of my duties was to apply to the Court of Protection for the council’s chief finance officer to be granted what is now known as deputyship for people in the council’s homes whose assets had to be sold to cover their fees and there was either no family or they weren’t interested. Annual statements of the person’s income and expenditure were required and, quite rightly, the court monitored these carefully. This was many years ago and I don’t have more recent experience of the system but the court is approachable.
You say the next of kin had a power of attorney for financial matters - if this was an enduring power of attorney (the predecessor of lasting powers of attorneys) it will still be valid if your father hasn’t revoked it. He is of course obliged to act in father’s best interests. What other family members might prefer is irrelevant.

Germanshepherdsmum

It really would be too dangerous to even have photos around if someone may attempt suicide I’m afraid. The most surprising things can be used. Glass or Perspex in a picture frame, even the frame itself are dangers. The staff know best but I understand how distressing it must be for you.

I realise that. A photo with a piece of blue tack isn’t going to be an issue. Given he has belts, shoes with shoelaces, an old radio in his room. And clothes with sleeves he could strangle himself with. There was a TV in there as well with a cord. He doesn’t watch to so he asked for it to be removed.
He’s not on suicide watch. He’s not had any suicide ideation and not self harmed.
The issues around restriction to electrical items is more that he’ll be phoning everyone at all hours including the emergency services 🤦‍♀️.

Germanshepherdsmum

I’m sorry to hear about what you are all going through.

Your father can’t grant a power of attorney as he lacks the necessary mental capacity. You may find this about applying for deputyship helpful.

www.gov.uk/become-deputy

Best wishes.

Hi, thanks for that. I did read this after I posted after a bit of searching. I’m quite shocked by levels of fees imposed tbh😱. Given you just pay the upfront fee with LPOA. but I get why.

I was confused as I thought you were still appointing an attorney, and this “deputy” was a new term to me. Thanks for clarify that, yes, this is indeed the term used and the process.

Have you gone through this process? Any advice ? Can you have multiple “deputies” acting together and jointly like a LPOA- I would want more than just our eldest next of kin with that power

Eldest next of kin is really reluctant to peruse this. He is my dads POA for finance and has been for years (dad spent huge amounts of time in partners country so NOK ran his affairs back here with my dad overseeing it) so he has become the default contact for dad, and his affairs as dads got older. He also lives nearer. Other siblings are 2-3 hours away. He is , not unreasonably, concerned thst if dad recovers he’ll go ballistic at having his rights taken away if we go through “court” to obtain it.
I’m also concerned that eldest NOK is ONLY attorney on financial/legal one, as it was done in days before LPOA. no substitute attorneys named. I think it puts eldest NOK in difficult position to have to make decisions about selling dads house or moving assets around (if that’s needed to pay for care) on his own rather than a mutiway decision with all dads children.

It really would be too dangerous to even have photos around if someone may attempt suicide I’m afraid. The most surprising things can be used. Glass or Perspex in a picture frame, even the frame itself are dangers. The staff know best but I understand how distressing it must be for you.

ronib

Dartwarb you wrote that your father is registered blind so it wouldn’t help him to have decorated walls. The reason why walls are bare is for the patient‘s safety. There’s a suicide risk attached to being an inpatient so extra safety is needed.

Have you contacted any charities for the blind? They might have some ideas on ways of helping with a stay in hospital. MIND is also very good.

Sorry, this is misunderstanding about who can be registered blind. A lot of those registered blind do have some vision . My father has lost peripheral vision to point where he finds it difficult to navigate or make out certain things. With his glasses he can still read big print, use a screen on big font and look at things close up. A few photos of family about the room I think would help him to be gro7nded in his family when we’re not there. But he can’t have them. There’s literally nothing familiar at all.
We know he developed classic Charles Bonnet syndrome last year, which is common amongst people with vision loss, this is where brain is no longer receiving full visual signals to the cortex so makes stuff up to fill n what’s missing- it’s strangely enough mostly people, even little miniature people or blue people in some cases. These people never speak- in other words a visual hallucination not hearing voices. Very weird. Most people gradually learn to cope with this, and slowly brain adapts to missing signals and it fades. Dad saw insect on floors (still does), water leaks, people in his house. He went into a home as he was calling police etc in middle of night to say people had broken in 🤷🏼‍♀️🤦‍♀️
In dads case though it hasn’t got better, and now he is in full psychosis with both visual hallucinations and hearing voices.

Thanks. Hopefully gives all the info without going to a solicitor.

That was a really useful link, GSM.
Many thanks.

Luckygirl3

My OH had PD for many years. Following a fall and hip surgery he became psychotic and it was assumed that this was an after effect of the trauma/delirium and would subside. It did not.

No-one ever discovered whether it was LBD, PD or the effect of the PD drugs, but he exhibited similar symptoms to your Father. He had terrifying delusions (he was being cut up and put down the sewer, there was a death machine in the corner of the room and people were being shovelled down it, the nurses were trying to dissolve his skin with special soap etc.) and also sexually inappropriate behaviour.

He was put on anti-psychotics to no avail. His terror and distress continued unabated till he died, which was my choice - I opted for him not to go to hospital for treatment of pneumonia, but to be allowed to drift away to freedom from his terror. I had both PofAs.

I do not think you can set up PofA for health and welfare if the subject does not have mental capacity - and your father sounds as though he would be outside this condition. You can register an existing PofA, but not set up a new one without mental capacity.

You as NOK can request to meet the consultant involved in your father's care. It does not have to be the "elder NOK", even if that is the person named on the PofA (I believe you said finance PofA is in place). You are his daughter and have a right to be involved in his care. Go with a list of questions: can a brain scan be organised now?/what is the rationale of the current drug regime/is it working/is there a clear diagnosis/what is the treatment plan going forward/how is improvement or deterioration being monitored/what is the social plan for the future etc.??

There is no reason why you should be in the dark over any of this. They should be discussing it with you. Go to the top - if you talk to nurses and carers on the ward you will get different messages from each. Communication is a huge problem in hospitals.

Jeez, this sounds very familiar. My ex’s schizophrenic delusions and hallucinations were bad enough, it dads are off scale in terms of horror- it’s like he’s in a horror movie with the level of how the “village” (whoever they are) are going to mutilate and torture him . It’s quite horrific enough to listen to , never mind being “in” it.
I suppose I’m not totally surprised they didn’t ever get diagnosis. I know it is a matter of elimination rather than positive diagnosis.
I’m sorry you had to go through this. I had to leave my marriage after 30 years due to safe guarding when my ex refused to take his antipsychotics any more. It was an incredibly hard 20 years of being his carer and took its toll on my mental health too. I hope you have found some peace since his death, and yes, I think pneumonia was the kind way to go. 💐

I’m sorry to hear about what you are all going through.

Your father can’t grant a power of attorney as he lacks the necessary mental capacity. You may find this about applying for deputyship helpful.

www.gov.uk/become-deputy

Best wishes.

dragonfly46

I do know how quickly anti-psychotic drugs work. My mum had delusions of many types for years, accusing us of things we hadn’t done, men following her etc. Eventually she saw a psychiatrist and after one tablet she rang me to tell me it had all been in her head!

I am so sorry you are having this to deal with. It makes us realise we should all have LEAs in place. We did ours last year.

Yes, my experience with my ex was I could 1. Tell within 48 hours he’d missed taking them, and 2. Acted very fast within 3 days when he went into crisis.

Ok, his starting doses were higher, but even at lower dose they had some effect

Dad appears to have no repose at all. He is responded to diazepam I think, but not antipsychotics

Dartwarb you wrote that your father is registered blind so it wouldn’t help him to have decorated walls. The reason why walls are bare is for the patient‘s safety. There’s a suicide risk attached to being an inpatient so extra safety is needed.

Have you contacted any charities for the blind? They might have some ideas on ways of helping with a stay in hospital. MIND is also very good.

My OH had PD for many years. Following a fall and hip surgery he became psychotic and it was assumed that this was an after effect of the trauma/delirium and would subside. It did not.

No-one ever discovered whether it was LBD, PD or the effect of the PD drugs, but he exhibited similar symptoms to your Father. He had terrifying delusions (he was being cut up and put down the sewer, there was a death machine in the corner of the room and people were being shovelled down it, the nurses were trying to dissolve his skin with special soap etc.) and also sexually inappropriate behaviour.

He was put on anti-psychotics to no avail. His terror and distress continued unabated till he died, which was my choice - I opted for him not to go to hospital for treatment of pneumonia, but to be allowed to drift away to freedom from his terror. I had both PofAs.

I do not think you can set up PofA for health and welfare if the subject does not have mental capacity - and your father sounds as though he would be outside this condition. You can register an existing PofA, but not set up a new one without mental capacity.

You as NOK can request to meet the consultant involved in your father's care. It does not have to be the "elder NOK", even if that is the person named on the PofA (I believe you said finance PofA is in place). You are his daughter and have a right to be involved in his care. Go with a list of questions: can a brain scan be organised now?/what is the rationale of the current drug regime/is it working/is there a clear diagnosis/what is the treatment plan going forward/how is improvement or deterioration being monitored/what is the social plan for the future etc.??

There is no reason why you should be in the dark over any of this. They should be discussing it with you. Go to the top - if you talk to nurses and carers on the ward you will get different messages from each. Communication is a huge problem in hospitals.

I do know how quickly anti-psychotic drugs work. My mum had delusions of many types for years, accusing us of things we hadn’t done, men following her etc. Eventually she saw a psychiatrist and after one tablet she rang me to tell me it had all been in her head!

I am so sorry you are having this to deal with. It makes us realise we should all have LEAs in place. We did ours last year.

As his partner will be abroad, could you decide as a family, who is best suited to be official next of kin..ie the person with most medical knowledge.. then ask to be invited to ALL the care meetings where a psychiatrist should be present. This will allow one of you to have consistent input and also to be able to ask questions..

I do hear what people are saying around not commenting on condition itself.
I’m more after people’s experiences of diagnosis processes when their elderly parent is in these assessment centres . And how we should be working with the mental health teams more effectively to support dad.
Plus experience of POA where he doesn’t have mental competence for LPOA .

Dartwarb im not sure your information about POA is correct I did it for mum after she had Alzheimer’s and had no mental capacity and it’s wasn’t long drawn out at all and I believe the court bit was only a signature needed if I remember rightly. Mum was on benefits so it didn’t cost anything I don’t think, certainly not that I can remember, however it was about 12 years ago so it could have changed
Worth a half hours free solicitors consultation I would think (if they still do that !!)

Wyllow3

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.

That’s interesting-and a question I can get next of kin to ask of the team re expert psychiatrist.
My experience of being carer for ex husband for 20 years is that psychiatrists are very thin on the ground - he only got to see one , once per year for 30 mins . So I imagine if we’re waiting on expert it’ll be a very long time.

The thought of him being a year in this assessment centre is worrying. He is in a tiny , dark room , in middle of a city (he lives in rural area), it’s noisy outside and in, and off course that doesn’t help his delusions. He has no toilet in his room and often doesn’t make it to the bathroom before having an accident. He has small residents lounge and dining area to wander to and that’s it. There’s a tiny garden but he can’t go there by himself and really it’s not big enough to walk properly and full of smokers which he hates around the benches. There’s no occupational type therapies , I’m not even sure care assistance talk to him thst much between our visits. It’s just so alien to him that I can’t see how it’s helping. He’s not allowed any phone, tablet etc (understandable) so is just sitting there with nothing to do. There’s nothing on his walls or room to make it remotely homely.

Dartwarb I was allowed to talk to the charge nurse/consultant psychiatrist about relatives without any formal guardianship or legal powers.
I would not seek to interfere with medication but did voice the patient’s concerns over dosage. As it happened, the psychiatrist was right and recovery followed more quickly once the dosage was raised.