That was a really useful link, GSM.
Many thanks.
Equality and Diversity Laws, should these be scrapped??
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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
That was a really useful link, GSM.
Many thanks.
Thanks. Hopefully gives all the info without going to a solicitor.
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.
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.
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.
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 🤦♀️.
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.
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.💐💐
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, 🤷🏼♀️
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.
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.
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.
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
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.
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