Mental capacity and care choices - battle with social worker!

[Champers]

Thanks for all your replies. I’ve spent a lot of last night composing our response in my head. I want to to cut this one off at the knees now as the SW is clearly dragging it out with his own agenda and not for MIL’s benefit.
We’ve always agreed that the residential home stay was for a trial period, not necessarily permanent and to use her “low mood” as emotional blackmail is disgusting.

MIL, at home for months, has been saying, “I want to die” “I’m fed up with being here” “Someone put me down” so, for him to try and insinuate that her depression because we are not allowing her to be discharged is disingenuous. The main reason we want her out of domiciliary care and into residential is for stimulation, social interaction and activities. Her own GP reported to us that she was clinically depressed before she even went into hospital.

I’m particularly outraged that he wants us to ‘justify’ in writing, our reasons for not allowing her home! I can only assume so he has the pleasure of reading them out to a distressed elderly lady? In my draft response I’ve said that we will not provide them, “as the matter has already been discussed at length with MIL. Whether she can recall and process and assimilate these conversations is a moot point, but you say she has mental capacity. “

If the NHS wish to pursue the route of the house being “a gift with reservation of benefits” we plan of trying to fight it on “best interests” I guess we could probably argue that by the SW’s action of delaying her discharge, he has further contributed to her “low mood” as by now, she would either have been happily settled in the residential home or close the end of her trial period there with the option she always had if returning to her own home.

 

[canary]

This is emotional blackmail and I dont like the way that they are talking about showing her your reply, but it sounds like they are prepared to play dirty. I agree with @Kevinl that it sounds like they are prepared to apply for CoP deputyship over your head. They may also apply to CoP for a ruling on where she should live, and that will open a whole can of worms and be difficult to overturn if (as is likely) they will rule that she should return home.

I dont think you have much choice now, but I would write and say that you have grave misgivings about her returning home. Document actual problems (not what you think is, or might, be happening) and everything that you had to do for her when she had a live-in carer and explain, that due to your health, you will not be able to do this in future.

Then let them get on with it. SS dont like allowing people to move to a care home until it has been shown that they are a danger to themselves, or other people. They dont care about things like them not recognising their home, being lonely, or lacking in stimulation; if the person says they want to go home, then, unless it is actually dangerous they will insist. I think you are going to have to let live-in care fail, and, whats more, to be seen to fail.

 

[2jays]

Sorry not fully read all of this thread

Just wondering if it’s worth contacting Care to be different https://caretobedifferent.co.uk/

I know it’s mainly with regard to CHC but they may be able to give you contact numbers to support you

Another thought was contact AgeUK

You may have already tried the main Alzheimer’s support number, but it may be worth contacting them about this further issue
0300 222 11 22

 

[Beate]

I guess I'm just not used to SS playing so dirty. I had a similar problem when OH was apparently medically fit for discharge after a week but had lost his mobility completely. They were pressuring me to take him home with wooly promises of community physio, but I stood my ground and told everyone who didn't want to hear it that I refused to take him home as I didn't want to be a prisoner in my own home with someone who couldn't leave the house anymore. Suddenly they found him a bed in a physio ward that was earmarked for closure and didn't actually take people anymore. He stayed for two months but even with extensive daily physio he never regained mobility, so when the ward did close, the hospital SW very quickly had to find him a care home, and he did. At that point there was no question about him returning home anymore.

I know hospitals need their beds, but the way Champers is treated is abysmal, and I think she should make it clear that her own mental health is now suffering as a direct result of the SW's actions.

 

[Sirena]

I think part of the reason for the problems you're continuing to encounter is that someone (the care agency?) originally reported that you were pressurising your MIL to go into a CH against her wishes. Therefore that is the SS starting point and they haven't really got past that. The sentence "It's important to also mention that even if she lacked mental capacity the recommendation would still be for her to return home" is telling. You don't have LPA and have been doing everything unofficially, and to them this is a grey area - I know she gave permission and encouraged this, but they obviously see her as vulnerable and needing their input. She has the funds to pay for care at home - if SS was paying, regardless of her wishes she'd be going to a care home because it would be far cheaper.

You said in your original post that you are prepared to step back and let SS take out deputyship, and I suspect this may now happen because it doesn't sound as if they are going to let this go.

 

[Sarasa]

I was wondering if it was worth trying to get LPA, the SW seemed to be encouraging this. You could then officially pay the bills while explaining that you are no longer able to pick up the pieces day to day when the care company have problems.

 

[Jaded'n'faded]

I think part of the reason for the problems you're continuing to encounter is that someone (the care agency?) originally reported that you were pressurising your MIL to go into a CH against her wishes. Therefore that is the SS starting point and they haven't really got past that. The sentence "It's important to also mention that even if she lacked mental capacity the recommendation would still be for her to return home" is telling. You don't have LPA and have been doing everything unofficially, and to them this is a grey area - I know she gave permission and encouraged this, but they obviously see her as vulnerable and needing their input. She has the funds to pay for care at home - if SS was paying, regardless of her wishes she'd be going to a care home because it would be far cheaper.

You said in your original post that you are prepared to step back and let SS take out deputyship, and I suspect this may now happen because it doesn't sound as if they are going to let this go.

This is the most frustrating part. What SS consider the relevant person's best interests varies according to who is paying.

They just love that 'I want to go home' phrase, don't they? They just seize on that then they've got you over a barrel. But they'd ignore it completely if they were paying for the care.

I don't know how much your MIL has in savings, @Champers (and it's none of my business!) but presumably it's a finite amount and you've said the house is yours. Have you worked out how long her savings will last if she pays for care at home, compared to how long it would last in a care home? Is this an argument you could use, i.e. that it would not be sensible use of MIL's funds? (But obviously I also don't know how ill she is or how many years of care she might need, so this might be irrelevant.)

I wish you every strength in sticking to your guns and pushing for what you know is right. It will be difficult to draft your reply, deciding what to put in, what to omit and which points to stress. One thing: you might want to seek assurance from this SW that should his plans go wrong and anything happens to your MIL as a result, that he will be personally responsible for all consequences.

 

[Champers]

My response:

We acknowledge receipt of your email and the attached assessment - which contains several inaccuracies regarding *********** admission into ******* Hospital. We shall deal with those on a separate occasion.

Your assumption regarding the root cause of ***********despondency has obviously been made without being aware that on 3 June - whilst ******** was living at home - we contacted her GP as we were increasingly concerned about her low mood. Dr ********** confirmed that she was in fact clinically depressed but said it was “generally age related” Her melancholy and negativity had also been observed by paramedics when called to her home on 1 June. For months, at home, she regularly has said, “I want die.” “I wish I could go to sleep and not wake up.” “I’m sick of just sitting here trapped in these four walls.” “I wish I wasn’t here any more.” “Just put me down like an animal.”
You seem to keep missing the whole point of our wish to encourage her to try residential care, is for this very reason - stimulation, social interaction and regular activities. To try and imply that our motives were anything other than altruistic is disingenuous and deeply distressing to us.

By your actions in delaying her discharge, you may yourself have contributed further to ********** already low mood. By now, she could either have been happily settled in the care home or nearing the end of her respite care there, after which ******* always had the option to return to the house.


************. may have forgotten the discussion we had when she agreed that she would consent to temporary residential care, but we have a clear recording of the conversation. Ironically, in which, she can be heard to say that she cannot remember the discussion she had with you either! We wonder why what she says to you seems to carry more weight that what she says to us? ********** is constantly inconsistent in the responses she gives to who ever is asking the question. She has always said that she wishes us to take charge of her care. Perhaps you should ask her this very question?


We do not think it is appropriate for ********** to return, in the immediate future, to the house in *******. We do not have to justify our decision to you - it is a matter that has already been discussed at length by us with ****** on numerous occasions. Whether she recalls those exchanges and has processed and assimilated the information is a moot point, but you say, she has mental capacity. There is no further benefit or point going backwards and forwards regarding this, so we now consider the decision made and the matter closed. Please advise us and (the care home) of the date her discharge in order that the necessary arrangements can be made.

Whilst writing, we note we have not received copies of the minutes of the the meeting on 21 June 2019 which would be normal, professional practice.

 

[silversea2020]

My response:

We acknowledge receipt of your email and the attached assessment - which contains several inaccuracies regarding *********** admission into ******* Hospital. We shall deal with those on a separate occasion.

Your assumption regarding the root cause of ***********despondency has obviously been made without being aware that on 3 June - whilst ******** was living at home - we contacted her GP as we were increasingly concerned about her low mood. Dr ********** confirmed that she was in fact clinically depressed but said it was “generally age related” Her melancholy and negativity had also been observed by paramedics when called to her home on 1 June. For months, at home, she regularly has said, “I want die.” “I wish I could go to sleep and not wake up.” “I’m sick of just sitting here trapped in these four walls.” “I wish I wasn’t here any more.” “Just put me down like an animal.”
You seem to keep missing the whole point of our wish to encourage her to try residential care, is for this very reason - stimulation, social interaction and regular activities. To try and imply that our motives were anything other than altruistic is disingenuous and deeply distressing to us.

By your actions in delaying her discharge, you may yourself have contributed further to ********** already low mood. By now, she could either have been happily settled in the care home or nearing the end of her respite care there, after which ******* always had the option to return to the house.


************. may have forgotten the discussion we had when she agreed that she would consent to temporary residential care, but we have a clear recording of the conversation. Ironically, in which, she can be heard to say that she cannot remember the discussion she had with you either! We wonder why what she says to you seems to carry more weight that what she says to us? ********** is constantly inconsistent in the responses she gives to who ever is asking the question. She has always said that she wishes us to take charge of her care. Perhaps you should ask her this very question?


We do not think it is appropriate for ********** to return, in the immediate future, to the house in *******. We do not have to justify our decision to you - it is a matter that has already been discussed at length by us with ****** on numerous occasions. Whether she recalls those exchanges and has processed and assimilated the information is a moot point, but you say, she has mental capacity. There is no further benefit or point going backwards and forwards regarding this, so we now consider the decision made and the matter closed. Please advise us and (the care home) of the date her discharge in order that the necessary arrangements can be made.

Whilst writing, we note we have not received copies of the minutes of the the meeting on 21 June 2019 which would be normal, professional practice.

A very good response showing that you mean business and will not just be bullied.

 

[Moggymad]

An excellent reply, well done

 

[Rosettastone57]

My response:

We acknowledge receipt of your email and the attached assessment - which contains several inaccuracies regarding *********** admission into ******* Hospital. We shall deal with those on a separate occasion.

Your assumption regarding the root cause of ***********despondency has obviously been made without being aware that on 3 June - whilst ******** was living at home - we contacted her GP as we were increasingly concerned about her low mood. Dr ********** confirmed that she was in fact clinically depressed but said it was “generally age related” Her melancholy and negativity had also been observed by paramedics when called to her home on 1 June. For months, at home, she regularly has said, “I want die.” “I wish I could go to sleep and not wake up.” “I’m sick of just sitting here trapped in these four walls.” “I wish I wasn’t here any more.” “Just put me down like an animal.”
You seem to keep missing the whole point of our wish to encourage her to try residential care, is for this very reason - stimulation, social interaction and regular activities. To try and imply that our motives were anything other than altruistic is disingenuous and deeply distressing to us.

By your actions in delaying her discharge, you may yourself have contributed further to ********** already low mood. By now, she could either have been happily settled in the care home or nearing the end of her respite care there, after which ******* always had the option to return to the house.


************. may have forgotten the discussion we had when she agreed that she would consent to temporary residential care, but we have a clear recording of the conversation. Ironically, in which, she can be heard to say that she cannot remember the discussion she had with you either! We wonder why what she says to you seems to carry more weight that what she says to us? ********** is constantly inconsistent in the responses she gives to who ever is asking the question. She has always said that she wishes us to take charge of her care. Perhaps you should ask her this very question?


We do not think it is appropriate for ********** to return, in the immediate future, to the house in *******. We do not have to justify our decision to you - it is a matter that has already been discussed at length by us with ****** on numerous occasions. Whether she recalls those exchanges and has processed and assimilated the information is a moot point, but you say, she has mental capacity. There is no further benefit or point going backwards and forwards regarding this, so we now consider the decision made and the matter closed. Please advise us and (the care home) of the date her discharge in order that the necessary arrangements can be made.

Whilst writing, we note we have not received copies of the minutes of the the meeting on 21 June 2019 which would be normal, professional practice.

Good response . Keep strong

 

[Champers]

Got a response this afternoon from SW’s boss. The email has clearly been passed on to her.

She started quoting all sorts of legalities about refusing MIL reentry to her home (owned by us) and tbh, we truly don’t want to go down that route. It was made very clear to her though that should that happen, we would definitely be walking away from absolutely all caring responsibilities and visiting MIL without any strings attached and all decisions will have to be referred back to her.
.
Even though she started spouting the “party line” I think we may have struck a slight nerve. I pointed out that my own elderly mother with dementia also talks regularly about “wanting to go home” and that it is often a sign of distress and a wish to return to a familiar time and place, before illness and disability and not necessarily a literal meaning. She seems to take my point on board and said it sounded very familiar to her experiences with her own parent!

She also talked about putting the finances on a more formal arrangement, such a POA, to pay MIL’s bills (I still think the outstanding care bill is getting up their noses) but we replied that as her colleague clearly thought MIL had full capacity, there was no need to get us involved but that she should be aware that once MIL realises that we are no longer handling that side of things, she will invariably become agitated and distressed and THEY will have to explain to her why we’re not involved. If he can forcefully request that we justify our stance, so can we. Tough,I know, but they can’t have it all ways.

I yet again reiterated that MIL will say one thing to one person and one thing to another and have no recollection of it. When we visited her this afternoon, she had no idea that her discharge and care plan had been discussed with her yesterday and was adamant that she wanted us to take charge. I requested that the senior SW ask MIL the question, “Do you want the NHS or ******* and ******* to help you make your decisions?” I can almost guarantee she will say us.


We are both so exasperated, exhausted and frustrated with the short sightedness and intransigence of SS that we are going to follow the advice of many of you on here and just let things take their course and wait for the massive fail as almost undoubtedly, MIL will yet again be back in hospital within two weeks again because the carers can’t cope.

 

[silversea2020]

Good for you making this stance against absolute ‘lunacy’.....

 

[Sirena]

Do you really not want to take out an LPA? It would make things a lot easier in future. It is likely that at some point someone will confirm she doesn't have capacity and in the absence of a formal arrangement the bank could freeze her accounts and you would lose access to funds to pay for care. I understand why you are playing it this way to SS but I'd be nervous about keeping things on this footing.

 

[Timebar]

I suppose if she comes back home as she is self-funding you could get a new care provider. If you're not happy with them start the process to trial residential. I know it would be a faff, but once the old provider have been dispensed with it may limit SS interest. If the bill isn't being paid, you may find the care agency giving notice to terminate the contract, which I assume they would move to do and have the right to do because you haven't fulfilled your part of the contract, i.e. paid. I suspect SS are getting a bit worried about this scenario.

When you asked the SW what they would have done if you had just moved her into residential and they said that they regularly visit care homes and ask if people are okay, that was just nonsense. They haven't got time to do that in any meaningful way. They're not usually bothered with self funders anyway. It's only because MIL is in hospital that they have become involved.

I still think you have a way forward here. But you may have to play a longer game.....

Best of luck, you're doing a stirling job!

 

[theunknown]

It bothers me how much social workers are being giving a hard time and abused on this thread. I've never been a social worker but I did work for Social Services in an admin capacity decades ago. Even then the individual social worker had far more clients then they should have been expected to deal with every day. Heaven knows what it's like now with no budget for social care and so many needing it. Social workers are working under the system, not running it. Personally I'd be glad that we still had people willing to be social workers. What we need is social care to be put on a par with physical health care financially. Unfortunately I think it's more likely public health care will also lose taxpapers' money.

 

[Champers]

It bothers me how much social workers are being giving a hard time and abused on this thread. I've never been a social worker but I did work for Social Services in an admin capacity decades ago. Even then the individual social worker had far more clients then they should have been expected to deal with every day. Heaven knows what it's like now with no budget for social care and so many needing it. Social workers are working under the system, not running it. Personally I'd be glad that we still had people willing to be social workers. What we need is social care to be put on a par with physical health care financially. Unfortunately I think it's more likely public health care will also lose taxpapers' money.

I would agree except that we’re finding ourselves hounded by a particularly overzealous individual. If he had actually sat down, talked to us and made an attempt to understand that as family, we know MIL and her personality and her needs far more than an individual who has only seen and made a judgement on a brief snapshot. The stupid and short sighted thing is; clearly, both sides want the best for the ‘client’ but he will not comprise one iota. We’ve very clearly stated that the residential care option was for a trial period only. If he didn’t trust us, which it’s now very apparent he doesn’t, he could have arranged a follow up visit to the home - and we’ve made no secret of the name to him - and seen for himself whether or not MIL had settled and was happy. But by his intransigence and self righteousness, he has prolonged her time in hospital unnecessarily, caused a break down in the special relationship my husband had with his mother (she was confused anyway and now she doesn’t know who is caring for her) and probably wasted valuable time that would have been better spent attending to someone else who could really use his help and support.

It’s apparent that in his mind we have some sort of agenda, but doesn’t have the courage to confront us directly. I wish he would because then we might have some recourse to the law ourselves.

 

[Timebar]

Social workers plural are not being "abused" on this thread. Neither is the one SW that Champers is having dealings with. Abuse is a loaded word to use. We are simply discussing a situation that Champers has found herself in.

I worked for the care regulator and have worked with many social workers, all of whom were hard working and well meaning individuals. The ones I encountered were pragmatic and reasonable and I have the greatest respect for their profession.

However, that won't stop me taking the actions I feel necessary when they try to discharge my MIL with Alzheimers and now seemingly permanent delirium back home to my elderly FIL who is in very poor health.

The "Home is best" mantra that social services peddle pretty much without exception these days I'm afraid I cannot agree with.

 

[silversea2020]

It bothers me how much social workers are being giving a hard time and abused on this thread. I've never been a social worker but I did work for Social Services in an admin capacity decades ago. Even then the individual social worker had far more clients then they should have been expected to deal with every day. Heaven knows what it's like now with no budget for social care and so many needing it. Social workers are working under the system, not running it. Personally I'd be glad that we still had people willing to be social workers. What we need is social care to be put on a par with physical health care financially. Unfortunately I think it's more likely public health care will also lose taxpapers' money

It bothers me how much social workers are being giving a hard time and abused on this thread. I've never been a social worker but I did work for Social Services in an admin capacity decades ago. Even then the individual social worker had far more clients then they should have been expected to deal with every day. Heaven knows what it's like now with no budget for social care and so many needing it. Social workers are working under the system, not running it. Personally I'd be glad that we still had people willing to be social workers. What we need is social care to be put on a par with physical health care financially. Unfortunately I think it's more likely public health care will also lose taxpapers' money.

I think until you personally are in a situation such as this one, perhaps best if your keep such accusations to your self ... no one is ‘abusing’ social workers on this thread - just merely explaining the difficulties currently being experienced. Reading the posts and offering support at this frustrating and upsetting time is what this forum is for.

 

[2jays]

Careful people in what you say....

I would hate for this thread to have to be closed due to some maybe unthinking words