Fil has two options; a carer or a care home

[MsAdorabelleDearheartVonLipwig]

And he won't let the carer in the bloody house.

He has had a depression diagnosis. He has paranoid delusions and dementia-like behaviour. He won't take medication. He cannot look after himself and doesn't trust anyone. We arranged for a carer to help him with housework and cooking and he wouldn't let her in.

Ffs. His social worker is as fed up as we are. Can she force him to go into a care home? I have no idea how it works.

Obviously no one is forcing anything on him against his will but I personally don't think he has the mental capacity to make an informed decision.

He's here now, I picked him up and brought him over for dinner. DBil has phoned to talk to him about the carer and he's swearing and shouting and getting angry. And now I've got to drive him all the way home all by myself. Lovely.

If he doesn't have capacity, then they can apply for a deprivation of liberty order to make decisions about where he lives for him - but its usually a fairly drawn out process. Talk to his social worker about what the next steps in keeping him safe are.

Is there anyone he might listen to? Dr, vicar, friend?

Hadn't heard about the deprivation of liberty order, will ask the social worker, thanks. Don't think he'll talk to anyone really. We're all worried about him and he just digs his heels in and seems to ignore the world around him. He accuses us of all meddling in his life but he'd be bloody well be dead if we hadn't, he'd have starved to death months ago.

Poor you, to call him hard work is an understatement. If he is a clear danger to himself (and to others eg by posing a fire risk, say) a deprivation of liberty order could be applied for as cmot mentioned. Ask the social worker if she thinks he warrants such a step. If not, then maybe all you can do is wait for crisis and a hospital admission, from where it is usually easier to set up services. And maybe think about how, as a family, you can protect yourself from him and the emotional effects of his behaviour as much as possible.

Capacity is based on his ability to make a decision- if he can understand what he's being told but still chooses a 'bad' choice then he still has capacity.

Has he had an assessment for dementia?

Apparently so. The doctor said he has capacity and it's up to him what decisions he makes, even if we think they're bad ones. Bloody ridiculous. So we've got to let him starve to death in his own filth because it's up to him? You can't tell me that's mental capacity.

He has finally let the carer in and she's cleaned the house and prepared some food for him. So we're making progress.

The crisis team got us to take him to hospital last year. They said it would be nicer if we took him because if they took him he would be sectioned. I had to get hold of Dh and DBil and get them to go and get him. It was a frantic afternoon. Looking back, we should have let the crisis team take him. Being sectioned might have set different balls rolling.

We had to take him to a meeting with some doctors at the local mental health hospital. It was a complete joke. They didn't know him from Adam and he just kept lying about everything. We tried to explain but they wanted to hear it from him with merely input from us. Then they discharged him. We haven't seen them since. The mental health care in this country is pitiful.

It is a basic principle of medical law that people are allowed to make unwise decisions for themselves as long as they understand the implications. If he has been assessed according to set criteria as having capacity then he cannot have his liberty deprived. Admittedly it can be very frustrating for families.

I don't know why we still bother with him to be honest. If he was my dad I'd have gone no contact with him years ago. He's a self-centred narcissistic bully with the personality of a fish. He manipulates everyone around him. He uses the depression as an excuse to get out of doing anything. I know how that sounds but if you knew him you'd understand. Someone he's known for years said that as Fil has been an arsehole all his life it's hard to feel sorry for him now. Imagine the most arrogant, ignorant, selfish man-child you can. That's him.

When DMil died DBil was meant to have the contents of her ISA, about £15k. It would have really helped him and DSil out. They had two babies in quick succession and he works all the hours God sends to support them. Then all this shit happened with Fil and DBil and DSil have supported him throughout. Fil has let them run around after him and they, like us, are fed up.

Turns out Fil cashed the ISA in and kept it for himself. He doesn't need it, he's loaded. He's let them help him out constantly whilst watching DBil work long hours and never see his kids because they need the money, and all the while Fil has been sitting on the ISA cash. He could have helped them out by giving them the money that DMil wanted them to have and he kept it for himself and did nothing. Whilst still expecting them to look after him.

I'd have nothing to do with him anymore if it were me, I really wouldn't.

This is still going on. I don't think he does understand implications anymore. He says he's got food in the house and when you check his cupboard is literally bare. You offer to get some food in for him and he says he doesn't need it, 'they'll take him away tomorrow'. Surely he must realise that he will starve if we don't keep intervening?

He has since refused the carer. He won't let us have power of attorney. He keeps accusing us of stealing from him. That's fucking rich, the leech. I offered to set up a taxi service for bringing him to ours for dinner every week and his immediate response was 'well that'll cost me'. Yet I have to do a 25 mile round trip to then feed him as well. He has thousands in the bank, we are on our arses and yet he's happy to let us run round after him.

I am so fucking sick of this man.

Well, PoA in Health and Welfare was my next suggestion, on the basis that otherwise the State owns him should he lost mental capacity officially, either temporarily thru a stroke or undiagnosed UTI or forever.

That means, they have more power over him than you do in effect. You won't even be able to read his medical notes in the care home. You do talk of Social Services, but in my experience their interest will be to get him in a home so they can control the situation and then fleece his savings and your inheritance. Which is okay in a way, but you never hear of Social Services (in our area at least) having anything to say when there is a care home failure.

But if you are dealing with a stubborn old man, it is hard to get him to do anything, I know. It becomes a power things, as his powers recede, the ones he has left are intransigence and obstruction.

A sort of defeated sorrow rather than anger approach works better with this type imo, they love the fight, it recharges the batteries.

Thank you NewspaperTaxis, I appreciate your help. He is a stubborn old man. He won't give us POA because he thinks we'll take all of his money. His own sons, not just his daughters in law. He has already accused us of stealing from him. But then he's always been a suspicious, ignorant man who judges everybody else by his own standards.

He's having more accidents at home these days. He can't always get to the toilet in time. I actually had to clean up his shit encrusted bathroom the other day because he couldn't do it and so had just left it. He is not able to look after himself. He can hardly feed himself, let alone wash and shower. It is fucking ridiculous. I am not going to be doing that for god knows how many more years.

We're going to try getting his male social worker to persuade him to sign the POA forms. He talks to him sometimes. It will just be for health reasons. We can pay for carers to look after him.

Sister in law won't have him at her house after he accused her of having access to and stealing his money. Dh is already fed up with him and won't play his games. I cannot fathom how this state of affairs can just be allowed to carry on. Please tell me it will get better? He's paid his stamp all his life and now he needs help no one is able to do anything.

How are you getting on OP? I've just popped in to correct something newspaper said. In short , that in the absence of PoA, you have no rights/standing whatsoever. That isn't correct.
Firstly, A deprivation of liberty order (dols) only applies in a hospital or care home environment. You can't request a 'dols' for someone in their own home. How are they deprived?

The key to all this is 'lacks ability.

Just as a PoA comes into play when a person 'lacks ability' then would a dols (dependant on where they are). What hospitals/social workers quite often omit from their advice, is that under dols, your fil must MUST be assigned what's called an RPR. A relevant persons representative.

An RPR can be anyone, neighbour, close friend or more usually son or daughter. The role of the RPR is to represent the individual in all 'best interest ' decisions. That in effect means you have the right to demand and see all medical records etc demand to be present in any meetings regards your fil welfare and absolutely be a party to the decisions regards his ongoing care. All the things a health and welfare PoA gives you.

So without going into things further at this stage, I would just say, please don't worry about PoA for health and welfare. You will have a legal standing if your fil is declared as lacking capacity. Any decision made for a 'lacks capacity' individual, must be made as a best interests decision, and the RPR Must be involved.

Just on a practical front, the situation with your fil is indeed very common. My advice would be to regularly ask for a capacity assessment. That's all you need. It's unrelated to diagnosis, and indeed it isn't just 'lacks capacity' but Lacks capacity in what?

Remember, your fil would absolutely be classed as 'vulnerable at this stage. Vulnerable to being taken advantage of financially, vulnerable to not remembering to eat or take medication, and clearly vulnerable to self neglect. It's the social worker who can advise you who 'owns' your fils capacity assessment, is he under the care of the hospital mh team? Who did his last capacity assessment and ask the SW if you can see it.

I do know how frustrating and upsetting some behaviours can be, but things like accusations re stealing is very very common in dementia patients and should be viewed as part of the illness. If indeed your fil is suffering from a dementia related illness, diagnosis will indeed help understanding of what your dealing with and what to expect in the coming months /years. Has he had a brain scan? and if not, I'd be jumping up and down to make that happen.
I trust you've let the SW/GP know your fil is now incontinent? Yes intervention needs to happen, but you have to ask the right questions to make it happen.

The question for you and your DH is, who wants to take the responsibility as your fils RPR? (Or just common sense equivalent as it stands at the moment). Social services, the nhs, will work better with you if one family member takes the lead.

In real terms, your fil may manage for a while in his own home with carers support. Personally, I'd encourage that for as long as possible. He clearly needs daily help with meals so chase the SW down on that one. Home support must meet his needs, so that includes daily meals and monitoring his personal hygiene etc.

7 days a week.

The only option after that would be going into care. Don't let SS Rush you into that. If he can manage with SS provided support at home, the law says that's what he should get.

PoA re finances is a whole separate kettle of fish.....to be frank, I'd be getting him to sign that now before he's declared 'lacking capacity'.

Once he's lost capacity, and a PoA isn't in place, you will have to apply to the court of protection (£400 a time) to get one. It also can take months. If you don't apply to the court of protection, SS will. That's when you lose any say in how your films estate is spent.

Sorry this is so long, but hope it helps.

That's a big help, thank you. I am going to get hold of his social worker and check about that capacity assessment. When you mention lacking capacity, I assume you mean mental capacity? He's already been assessed and found to have capacity in that respect. We were told that we might not agree with his decisions but they were valid decisions. What, like not being able to wash his own arse after he's shit himself? Not eat? That sort of decision? Christ they're useless.

We wanted to get POA to be able to pay for carers. At the moment he won't pay for any help. Not that he lets them in when they turn up anyway. If we could get a seven day support package in place could we give a spare key to the carer? Would he even be eligible for that level of support?

He's also been checked for signs of dementia and found to have none, but that was done last year I believe. Might be time to ask for another one.

He won't sign the POA forms because he is a self centred greedy old man who thinks we're like him and would take the money. He doesn't understand that it doesn't work like that. He's paranoid and mistrustful. He's always been greedy and selfish. He's ten times worse now.

It's so wearying constantly having it thrown back in your face. Perhaps he does have dementia. It is sometimes hard to believe that someone can be such a worry to their family and yet so utterly ungrateful and undeserving.

If money is available, then a care home after you have POA in place may be the way forward.

I had a relative who had dementia. To me, even with limited knowledge of the illness, I could tell. Symptoms were -
Paranoia
Reduced mobility
Frequent falls
Repeating actions and questions over and over again
Suspicious of other people - making accusations
Memory loss
Confusion
Hallucinations - auditory and visual
Aggressive behaviour - verbally and some physically
Constant calling out for someone
Being verbally abusive to carers
Not recognising familar people

This then worsened with
Mobility loss to the point of being bedridden
Difficulty swallowing
Difficulty chewing
Difficulty talking

It took weeks and weeks to get the relatives GP to visit, and when they did they said it was not dementia.

I agree that mental health support is abysmal.

People with dementia (we had two relatives with it for many years altogether so I have a lot of T shirts) are often unable to understand or remember that there's anything wrong with them. My own mother still thought there was nothing wrong with her even when she could no,longer even make herself a cup of tea. And when they tell anyone like GP or social worker that they still do all their own shopping/cooking/cleaning, etc., when they haven't been able to for some time, it's not necessarily lying as such - they very likely believe it, because they can't remember that they can't manage these any more.

Social workers often prefer to believe what the person with dementia tells them (yes, I can still manage, no, I don't want or need carers in, no, I don't want to go into a care home) because the less they have to provide in the way of care, the less expense for the council. Having said that, nobody can force anyone to accept carers - sadly sometimes, if the person just won't accept help, there is not much you can do but wait for the almost inevitable crisis.

The Alzheimer's Society website and forum are extremely helpful in all matters relating to dementia - do please take a look. The forum is brilliant and has been a lifeline for many. Whatever you are going through, others will know exactly what it's like.

If the person would be self funded, then it can be a good deal easier to arrange a care home, since you do not need council approval first. However you still have the problem of getting the person there. We did not discuss the care home issue with my mother at all - there was no,point since she would have refused point blank to go. Why would she, when according to her there was nothing wrong with her? However she was very bad by then and the need had become urgent. We had to get her there by deception - not nice, but by then it was the only way.

Should have added (in the case of someone who won't accept help) that there's not much you can do - unless the person has been shown to lack capacity.

Another thing, if you do not have power of attorney, it can save an awful lot of later hassle to put this in place, for both finances and health and welfare - if the person will agree to it. Having dementia does not in itself necessarily mean they can't agree - if they can understand at the time what they are agreeing to.
Again, there is a lot of info on this on the Alz Soc website.

Agree with everything GLMM says here. Seek out support and guidance and find out as much as you can about how the system works.
Just harking back to SS though, I would however keep the pressure on them. Your fil lives alone. Even if he would be classified as self funding, it could take months and months to resolve PoA re his finances, and months and months to sell his property. If your fil needs urgent support now, SS will and must provide it irrespective of the funding bun fight. What would then happen is costs would simply be deferred against say the sale of his home, when that finally happens.

But yes, do challenge the capacity assessment . Yes you are right, he clearly lacks capacity in certain areas I.e not recognising a/ his incontinence, and b/ the importance of cleaning himself up after incontinent episodes. But just as importantly, he's not seeking medical care for the cause. It could be caused by any number of reasons, I.e cancer, so it's important his incontinence is investigated, and if he's refusing consent, you must tell his GP and SW. Not seeking medical help is another area of 'lacking capacity' so yes, demand /make a fuss about a new assessment bring done. SS and his GP cannot ignore the families concerns.....to do so opens a whole bag of worms when he burns the house down having forgotten to turn off the gas. He is vulnerable, he possibly is now struggling to keep himself safe, but certainly he is suffering from self neglect. All these things should get the action and support your fil needs.

PS and yes he will deny any things wrong with him till the bitter end. That's exactly the issue so don't be frustrated by it, this is exactly why capacity assessments exist.

the assessor won't know his home circumstances or the daily issues he faces, unless you tell them, so do ensure you're telling them the key pertinent points, keeping personal safety, care, at the forefront. Good luck

PPS just notice you say someone looked at possible dementia, who did that and what tests were done? You need more info on this. A 10 minute chat in a GPs surgery isn't a full medical assessment, and if no one was with him to contradict him , yes I'm fine, yes I cook etc then to be frank, yes it's an utter waste of time.

Personally I'd be demanding full testing which includes ct/mri scanning, blood testing etc With dementia, early diagnosis is the key (I.e vascular, Alzheimer's etc) as possible treatments are available. If you're not being listened to, put your concerns in writing and ask for information regards your LA/GP complaints procedure. It doesn't need to be aggressive, simply asking how and to whom you raise your "concerns", (complain) should help getting something going.

No one can hide behind a possible dementia patient saying 'they're absolute fine" as removing responsibility.

indeed dementia care homes would be emptied overnight with everyone of them declaring themselves fit and going home! Clearly your fils physical and behavioural issues contradict this, but you do need to make these issues impossible to ignore I e in writing or via complaints if they persist in ignoring your phone calls.

Thank you all so much for your words, you've been immensely helpful. I will write all this down in a list and ask for a meeting with the social worker again. I will explain that he clearly doesn't have full capacity and ask for a full dementia assessment.

I wouldn't say he denies there's anything wrong though. All we hear is woe is me, it's all gone wrong, I'm done for, nothing's any good, I can't be helped, I'll never get better. Imagine a narcissist with depression. That's him.

DBil doesn't want him to go into a care home. He wants his kids - Fil's gc - to receive an inheritance. We keep telling him it won't happen and the house will have to be sold to pay for care but he doesn't want that to happen.

Well DBil has one choice only then, he must move him in with him and his family and take full responsibility for him. Sorted

What prompted the crisis team to get involved last year? There will also have been a full report prepared from the hospital mental health assessment, even though he was discharged, do you know what it said? It would be really helpful for you to see those. I'd just be really surprised that the psyches didn't ask for say a 3 or 6 month follow up.

Something prompted your fil to be admitted and you need to know what their view was at that time.
What medication is he supposed to be taking? Why or what prompted SS to get involved?

In a nutshell you need a diagnosis, your fil has the right to be told what's wrong with him, (this isn't just depression?) and the nhs can then explain why no treatment is being given or no follow up was recommended. (Unless of course he's supposed to be on anti psychosis drugs that he's not taking!)

You do need his incontinence investigating, (that's a bit of a curved ball given what you've described already and I'd be concerned there is indeed something more to that).

So diagnosis, and a new capacity assessment. Until you do know exactly what you're dealing with, how can you make any decisions regards his mid to long term care? Good luck, and massive respect to you picking up this unenviable gauntlet xx

Ps I wasn't asking the personal questions for you to answer! There's really no need to share your fils medical history!!!!!

It was just to help focus questions for you to be clear on. It's the sort of information you and the family need to know, if you don't already, to help you guys make the decisions you'll be forced to make in the future.
Just read my post back to myself and realised how it sounded!!!

We phoned the gp when his behaviour deteriorated to the point he was crying and shaking and telling us he hadn't eaten or washed. The crisis team intervened and took him off to a care facility for a couple of weeks. He's been two or three times since when they think he needs a break. His social workers check up on him every week.

I don't know who we would ask to see a report from the crisis team. The social worker I guess.

The crisis team's gp sees him once a month, I think, and he's on a course of anti-depressants which he mostly doesn't bother to take. He also has injections now with a view to reducing the pills. A care worker comes and picks him up to take him to hospital but sometimes he refuses to get in the car and then they're stuck, so we're no further forward.

Dh and DBil have just had a row on the phone about him. DBil thinks Dh isn't pulling his weight and Dh thinks DBil is obsessed with the inheritance.

Sorry to read that OP, you really are between a rock and a hard place. It does sound MH have a plan in place though clearly it's not working well at the moment. I'm sorry to say I agree with earlier advice, you may need to step back and let a 'crisis' happen. He's on SS monitoring radar, he has an assigned SW, he's under some form of NHS MH care plan, all I can suggest is to ask SW if they could organise a MDT (multi disciplinary team) review and involve the family in that.

It certainly sounds like your fil is ill, (I know, states the obvious) but that puts him squarely in NHS responsibility territory.

Whilst your fil needs NHS care, he won't be expected to self pay for support.

It's a tad complex, and the rules around what's called NHS continuing care get stretched and bent by differing authorities, but at this stage, your fil is clearly receiving NHS provided treatment for his mental illness. Whilst that continues, my understanding is all care /support should be funded by the NHS.

I'm now way outside my knowledge area, but is anyone out there who can give pointers to the OP about getting advice and support re NHS continuing care and eligibility?

Basically it's playing the scoring game and winning. Sorry if that sounds stark. Continuing Health Care (CHC) is awarded if you score severe in 2 of about 9 or 11 domains, which include: skin integrity/ mobility/ nutrition/ cognition/ behaviour/ ,medication. The more you have wrong with you which requires skilled input from trained professionals, the more likely you are to be awarded CHC, in which case the NHS pays for all your care. In dementia, "challenging behaviour" is often the best way to qualify. I found invaluable information and advice on the "Care to Be Different" website. The founder is a mumsnetter who got CHC for both her elderly parents and found the process so overwhelming she started an organisation to help guide people through the process.

Whataboutbob - if the OP's FIL is living in his own home and sort of looking after himself he will not get CHC. The bar is set pretty high for that (we looked at it for MIL who has dementia). You not only have to have mental incapacity but also a fairly high level of physical incapacity.

V helpful post from Chris12345678910

OP: get your FIL a dementia assessment. Then you can get the ball rolling after you have the results. A lot of his behaviour could be caused by dementia - but if he's been a poor father and a narc, then I'm not surprised you resent looking after him. bad enough doing all this for a loved parent.

Does he receive attendance allowance, OP? He could be entitled to that.

That's tremendously helpful, thank you. I'm making a list of all these points to present to the social worker. I'm going to ask for that MDT review.

Re the domains, he has problems with mobility, nutrition, behaviour and definitely medication. I wasn't sure if he would qualify for any NHS help as he's got plenty of money. I think it would do us all good to take a step back but DBil is hard to convince.