FIL again

[countrygirl99]

Sorry this us long, just need to rant. I've written about my stubborn FIL before. He is 83 and main carer for MIL who is severely disabled following a stroke. He has become quite frail now, falls frequently and the slightest bug knocks him for six. MIL really needs to go back into a home but he won't have it and has a tantrum whenever anyone tries to discuss a long term plan that isn't a DIL giving up work to look.aftrr them (not going to happen). Since MIL came home he has been telling her SS will provide a 24 hour live in carer if anything happens to him which he knows is a lie. He knows we know but refuses to talk to anyone who says so for a week or so. So that's going to be fun when the crunch comes, likely very soon.
The last year has been quite rough for the whole family. Several family members have taken a big income hit due to covid. 1 of DHs brothers had an accident that he was lucky to survive and is still recovering, the other is off work following a nasty liver infection. My parents are older and have their own major health issues, including dementia. DH has given up several days work recently to take his dad for hospital treatment.
Yesterday morning DH spoke to his dad who said he was in pain and asked DH what painkillers he could take. Moaned that the suggested paracetamol/ibuprofen wouldn't be good enough and huffed when DH said in that case he would need to speak to his GP. No idea what he expected DH to do, come running I guess. Last night, while DH and DS1 were out collecting some second hand furniture DH got a call from the carers "your dad is ill, he won't go to hospital unless someone sits with your mum, what are you going to do". So he told them he can't help, he is out helping someone else and has a diabetes check himself first thing in the morning. In the end an elderly aunt went round and paramedics came and checked him over. It turns out he has been self medicating with immodium for the last 10 days as diarrhoea is a side effect of his treatment. He just had self inflicted constipation! God knows what would have happened if he had needed to be admitted, likely he would have refused.
DH has reached his limit with him and us now trying being tough with him instead of dropping everything and running over every time. We are an hour away so ok in a real emergency/planned visits but it's just too much now.

OH, countrygirl that does sound a difficult situation! But it seems your DH is now taking the right stance.

If MIL is severely disabled, has she had a Social Services assessment of needs? And has FIL had an assessment of his needs as a carer? I'm thinking of a relative of mine who cares for a severely disabled adult dependent. He gets an allowance of respite care and an allowance of "sit with" care, nowhere near enough, but enough to call upon if he has a medical appointment.

Should she even be at home op? Is she safe enough with FIL?

They have 4 carer visits a day and as long as he isn't having a bad day they get by. But he is burning the candle at both ends, is old and frail and it can't last much longer. He gets exhausted and depressed very frequently and that's making his health deteriorate. Soon it's going to be a proper crisis that we really are going to have to drop everything for. MIL needs someone around 24/7 and currently the only backup is DH and SIL2 (he hates SIL1 with a vengeance and it's mutual). All FIL cares about is MIL not going into a home. Literally nothing else matters to him.
DH & SIL2 are both self employed and SIL2 is a beautician so has only just been able to return to work. She wasn't even eligible for the self employed grant so BIL2 and SIL2 are skint. SS have told him that they can't make MIL go into a home but 4 visits is the maximum they will pay for. She is paralysed, incontinent and unable to talk, read or write. She is completely dependent on other people for absolutely everything. She can't even get herself a glass of water or move her wheelchair.
He is currently not speaking to DH as he didn't go round last night. DH had his long delayed diabetic review first thing this morning and his blood pressure was worryingly high (I wonder why). Today he has alsobeen at clients he rescheduled so he could take his dad to hospital appointments.

Does MIL still have capacity?

What would she want if FIL was not able to care for her? Would she accept a home?

MIL has capacity. The big problem is FIL has spent the last 4 years lying to her that SS have promised 24 hour live in care at home. They haven't, we have checked. He has been told multiple times by SS that it isn't going to happen but he still tells her it will. It's going to come as a massive shock.

If your MIL is unable to speak read or write I would really question if her comprehension of spoken language is good enough to have capacity to make decisions.

She passes the capacity tests SS use. Apparently if she can do things like point to a picture of an apple when asked she is ok to make decisions 🤷‍♀️. Even when much younger she would never stay in the house alone overnight, there would always be someone staying over or she would go to her sisters. She was always fearful of someone breaking in. So even if she was widowed in good health it would have been tricky, in her current situation it's a nightmare.

So what does FIL expect to happen when he can no longer care for her, and himself?

Would he agree to them going into a home together? Extra care, for example, if they could manage, or a care home that takes couples?

If SS say your MIL has capacity, they should be asking her what she thinks and wants, and be telling her the options...including that 24 hour care isn’t an option.

But sometimes a LA DO provide live in care, actually.

@PremierSmeage

So what does FIL expect to happen when he can no longer care for her, and himself?

He expects 24 hourcare to miraculously happen. I think he thinks if he is stubborn enough somehow it will happen.

@UpTheJunktion

Would he agree to them going into a home together? Extra care, for example, if they could manage, or a care home that takes couples?

They don't have the money to self fund and if he was on his own he would cope without carers so SS won't fund.

@UpTheJunktion

If SS say your MIL has capacity, they should be asking her what she thinks and wants, and be telling her the options...including that 24 hour care isn’t an option.

But sometimes a LA DO provide live in care, actually.

The old named social worker was very good and would have had her persuaded easily - she managed to persuade them to take respite care a few times. The new one is a tick box type and doesn't use any imagination or subtlety. DH has tried to explain to MIL, she gets upset, FIL tells her DH is wrong and she is happy again.

I get your DH and Sil 2 to pull your Fil aside and tell him they are no longer going to put up with him being a stubborn individual about his wife going into a nursing home.
Tell him that he has known for years that that social services won't provide 24 hour care for his wife at home and he health has got worse so he can no longer do this.
Ask him what will happen to mil if you end up in hospital or drop dead?
Tell him as well that DH and Sil 2 are not going to move into Fil house to mind them so unless he listens and does what DH and Sil 2 want that he won't get any more support from either of you. So he will have to contact Sil 1 and see will she help him.

Tell him that you have no choice but to tell social services that he is no longer able to mind his wife. Also tell social services that DH and Sil 2 are both back working so they can't provide support to help fil to keep mil at home.

If he gets her moved into a nursing home make sure that DH and Sil 2 take turns to bring him to see her. I say he is both physically and mentally exhausted minding her but refuses to admit this. The reality is that he will end up in hospital soon and then what happens?

I get DH to ring social services and tell them that Fil is no longer able to care for mil at home due to his health issues and him and Sil 2 are no longer in a position to help fil out. Tell them you want a new social worker to deal with him.

Those conversations with FIL have happened several times. BIL2 tried to talk to him yesterday got yelled at and the phone slammed down.
He's going to need go speak to DH soon as he has a post treatment check due week after next and he will need DH to drive him (a specialist unit, not a local hospital) and he hasn't told him the date yet.
About a year ago he told SS they can't discuss ILs with us so although we can express concerns they can't tell us anything now. He did this because we called SS and told them we were worried he couldn't cope anymore when he was phoning up saying he wanted to kill himself. He told SS we were making it up as we wanted to dump MIL in a home so we didn't have to bother with her.

You won't be enable to reason with him. So don't try. Actions speak louder than words.
Difficult as it is, you all need to step right away and leave them to it. Only when a crisis develops will anything move forward, otherwise ss will happily leave you to it. It's easier and cheaper for them to keep MIL at home. Inform them of the fact that no family will now be involved in any propping up of this ridiculous situation, and remind them they have the duty of care to two vulnerable adults at risk. In writing. They cannot make you have an involvement so time to make difficult choices.
No more lifts. No more stepping in when the carers call.
I saw this many years as a district nurse. Time to make difficult choices before it impacts on your own physical and mental health.

You need to step back and let them fail unfortunately. It’s the only way SS will step up, while you are there they will put on you.
Don’t answer the phone to the carers, let them struggle and complain to their manager, then changes will happen.

That's the conclusion we have come to. DH doesn't mind taking him to "big" consultations and the specialist unit but FIL needs to understand that means he isn't available at other times.

To be fair to SS they have offered a lot of support that he has rejected e.g up to 10 weeks a year respite - rejected because would mean MIL going into a home for a week or 2 at a time.

It does sound as if stepping back will force the situation to resolve

I know it sounds harsh but the hospital will provide transport for DFIL to get to his appointments.

It may be really hard for your DH to do, but I agree with CP and Dinosaur. Inform SS in writing and remind them of their duty if care and leave them to it.

In my very limited experience, elderly people can be very focused on keeping their partner at home without any real consideration of other options or if it is beneficial fir them to be at home.

elderly people can be very focused on keeping their partner at home without any real consideration of other options or if it is beneficial fir them to be at home. Beneficial is difficult to define - it usually means "the body is physically safe". I'd prefer to be physically unsafe rather than forced to live without autonomy for perhaps 10 or 15 years.

DH is happy to take FIL to the bid consultations and the specialist unit as he panics snd doesn't take in what he is being told. Our biggest fear, other than the frequent urgent calls is that FIL will be admitted or die and MIL will have to go to to a home as an emergency admission when she is unused to the environment and is already upset and distressed. There is no way she could stay at home, she would be terrified to be left alone for even a trip to the corner shop. She panicked when FIL was showing DH a problem with his car and they had put her by the window so she could see them. After her stroke she was in a home fully funded for 2 years and, from conversations with SS, I doubt there would be an issue with SS agreeing for her to go back. The problem is entirely in accepting the offer. My gripe with the current SW is she just asks the question straight whereas the old one put some effort into flattering FILs efforts and convince them both that it would keep MIL home longer if they took the respite offers even occasionally.

Our biggest fear, other than the frequent urgent calls is that FIL will be admitted or die and MIL will have to go to to a home as an emergency admission when she is unused to the environment and is already upset and distressed. Sadly it sounds as if there's a very high chance of that happening.

Your FiL sounds really stubborn but you can be equally as stubborn but standing up for MiL.

Come at the situation from her point of view. She would be frightened and distressed if she were to be put into an unfamiliar environment if anything were to happen to him so you're looking out for her. If he really loves his wife, he should be looking out for her wellbeing too and part of that is planning ahead. He might not like it but it has to happen. She has to go in for respite care so that if something serious happened to him, it wouldn't be such a shock to HER system.
So, what is it going to be FiL? Are you going to withhold support and care for your wife or not?
I don't think this is about him at this point. It's about her care, her welfare, her life and someone has to stand up for her.

Your DH can still bring his dad to the big appointments but in the meantime, someone has to stand up for your MiL

Just my two cents on the matter.