Who has final say in this situation?

[abovetheweather]

Hello - any advice or experience on this situation gratefully received.

My MIL lives alone since her husband's death a year ago. She's been completely bedbound for four years. She refused physio to help her sit and walk after falling four years ago, and her condition has worsened to this point. Her husband cared for her up until it got too much for him, when we organised private carers. Since his death, she receives 4x daily visits from carers who do all her personal and feeding care (she's doubly incontinent and on a catheter, can't sit, stand or walk, cook etc). Her two sons (one being my DP) visit every other weekend to shop, clear out the fridge, empty bins, keep on top of her prescriptions, sort out her newspapers etc. They both live 2.5 hours drive from her. It's gruelling, and affecting all our family lives, and we need more help. The house is becoming more dilapidated, with an old boiler, a failing washing machine, and more. Among her physical issues, which also include being pre-diabetic, she is losing feeling in her hands, and can no longer dial a phone. She suffers short-term memory loss - for example, she can't remember if a GP has called or why she's had a blood test, and forgets to write things down. Undoubtedly she is grieving too, although she never / rarely mentions her husband. She's lying in a bed, 24 hours a day, with only visits from the carers to break up the day. DP phones every day too.

For reasons that don't need detailing here, a GP visited her in December 24 and said that the best next step was for MIL to go into private nursing / care home. We are in total support of this, feeling that she will be much safer, have more company, have more stimulation and it will very much ease the burden on all of us.

MIL does not want to go into a care home, preferring the current set-up. She is not really aware and doesn't care about the effort and admin that it takes the brothers. The brothers do not have POA for her health.

Social services have recently visited and say that despite all the above she does not need to go into care, and that her care can not only be increased (to cover shopping, prescriptions, laundry etc that the brothers are currently doing) but will reduce in cost as the council will fund part of it (which was extremely surprising to learn after a year of paying full whack). However, her failing health, failing house and general safety don't seem to have been considered - and her being at home will not alleviate the worry the brothers have about what the next phone call will bring. It will mean they can visit on a more informal basis.

In summary.

MIL lives alone in a bed 24 hours a day, in a falling apart house, with her sons worrying about the entire set-up and constantly in fight or flight mode for the next phone call where something has gone wrong - which could be anything from the oven is broken to running out of toilet paper based on past experience. She does not want to go into care. The brothers don't have POA. The GP states she should go into care. Social services think she can manage at home with more care. What happens next? I fear I know the answer, and that it's MIL staying put as she can still decide, despite her failing health and short-term health issues. Who do we speak to first, can we request another social services visit? Who has final say?

Thank you so much if you've reached this far. Even typing this out is cathartic.

Ah the capacity trap - which basically translates as long as you can express an opinion on your care or treatment, irrespective if it's inconvenient, silly or unsafe, your opinion is the one that's followed. And I'm only being a little bit facetious. The law basically says you are allowed to make bad decisions. And yes family have to watch the slow car crash happen, in the full and complete knowledge that the individual is placing themselves in preventable harms way.

OK so this is what happened with FIL. He regularly set fire to the gas hob, (we turned it off at the mains), exploded the microwave (was going through one a month), left food cooking in the oven (turned that off at the mains too). The final clincher - when he started peeing on the electric fire. SS did what they could but they are obliged to follow rules on capacity which are set so low that they barely ever get used. However - and this is your way in - the GP thinks she needs care. FIL's GP arranged a domiciliary visit by a Psychiatrist specialising in the elderly and he was sectioned and taken into hospital. To be fair to him, he didn't object too much. By this time he was living in absolute squalor - of the level that if he had been an animal, his owners would have faced prosecution.

Your MIL is completely unable to care in any way for herself - she may have an opinion about not going into care, but her views are so disordered as to be clinically questionable.

So get back to the GP and request he put things in motion for either a Deprivation of Liberty or section under the Mental Health Act. I'll admit a certain amount of hard ball will need to be played by the family to get the right people in the room.

That's great advice, @DPotter 👍🏻

Thank you so much @DPotter for your experience and insight. Our first instinct was to row with social services about how they could possibly think this situation is tenable - but the GP is the more wise move at this point. Thank you.

Will she not agree to a POA? That makes her vulnerable once she loses capacity.

@OldChairMan poa is only valid if the person still has mental faculty.......also it can take up to 12 weeks or more to be processed

And she has been recently assessed as having capacity. I was trying to clarify why the sons don’t have POA.

You have a few options:

1. Carry on as your are, try going the GP route and see what happens. In our area the GPs won't do anything without support from social care, so you may get stuck this route.

1. Reduce / stop all support from family, citing carer breakdown and wait for it to reach crisis point and push for a hospital admission. On discharge insist that MIL can no longer remain safe in her own home and needs to be discharged to a care home as the family no longer provide support. It is unbelievably difficult to do this (we are going through this at the moment) but it is the only way to push it if Social Services and the GP won't step up to intervene. And for as long as you provide support they will think your MIL is coping.

Your DP and DBIL may be eligible for carers support. If in England/Wales they should also push for an assessment for them. Even if they don't take any support they will have logged just how much support they are giving and what a toll it is taking on all of you.

If you can get PoA in place for Welfare, do so. Otherwise all the decisions are in the hands of the authorities and it is extremely slow.

She has refused the health and welfare POA (for the very reason of care homes), but the brothers do have finance so can administer all her bills, banking and so on - she is unable to do any of this herself.

If she still has mental capacity she can't be forced to a particular choice where the choice is a genuine option.

She also cannot force her sons to facilitate something being a genuine option, or refuse to pay the costs of something she wants if she has the assets.

The reality is that this gruelling situation requires your DH's and BIL's consent and cooperation in order to continue. They have every right to withdraw that consent and cooperation. They can say that from now on they will contine to visit and phone in order to keep in contact but that they are no longer able to do any practical tasks, and all the actual work needs to be done by paid carers from now on.

Then MIL will have a genuine choice between either going into a home or having all the practical tasks currently being done by her sons done by paid help instead

She cannot command their obedience.

POA needs to be sorted as a matter of urgency if you can gently coax your MIL to accept it’s a good idea. You will need it when she loses capacity but it can’t be granted then.

The application must be done while the person has the capacity to agree to it . It doesn’t become active until it’s medically agreed that she no longer has capacity to make her own welfare decisions.

It's the only way forward. Nobody wants to do this but there's no choice.

Does she own the home? Would a middle ground of sheltered accommodation be acceptable? Something closer?

Can you try it more on the basis of respite care first e.g. the carers will be away so going to do respite care for a few weeks. She may love it enough that she wants to stay.

If you MIL has capacity then she has final say. Obviously. Even if welfare POA is set up

Bur obviously your DH and his DBro have final say in what care they will provide.

All the sheltered accommodation I've looked at would refuse to take her due to her level of need. Someone who is already there and deteriorated is different.

I doubt she would be sectioned as she's not a danger to herself or anyone else.
I agree , withdraw family support , it's too damaging for her relatives and their families.

Reduce / stop all support from family, citing carer breakdown and wait for it to reach crisis point and push for a hospital admission. On discharge insist that MIL can no longer remain safe in her own home and needs to be discharged to a care home as the family no longer provide support. It is unbelievably difficult to do this (we are going through this at the moment) but it is the only way to push it if Social Services and the GP won't step up to intervene. And for as long as you provide support they will think your MIL is coping.

You are paying the carers directly.
Get them to record how her memory and decision making capacity is failing during daily visits.

So even if she passes the capacity test at the moment that her decline is tracked as some people do perk up for the SS visit and look more capable than they otherwise are.

Deprivation of liberty can be used where the elderly are a danger to themselves. She cannot do anything so is clearly a danger to herself. She’s not thinking rationally. Definitely speak to GP. The sons need to withdraw support and let SS and GP know this is happening. Just deal with money and be firm about caring. This situation obviously cannot continue.

Her two sons (one being my DP) visit every other weekend to shop, clear out the fridge, empty bins, keep on top of her prescriptions, sort out her newspapers etc. They both live 2.5 hours drive from her. It's gruelling, and affecting all our family lives, and we need more help.

As a stop gap, and as they have financial POA, they could employ a PA to do most of that. Presumably the only tricky one would be the prescriptions. How much involvement do they have there? Presumably she has dosset boxes?

I would stop referring to MIL as having 'short term memory loss' and start saying 'undiagnosed dementia' - it stops people minimizing the situation. Undiagnosed as she is now too unwell to go to memory clinic but clearly has dementia.

Her history sounds very typical of the decline of dementia - had a fall, dementia had affected her motivation so she didn't do any physio, now bed bound, dementia got worse - doubly incontinent, house falling apart as she can't make any decisions.

Sadly she probably isn't grieving and doesn't mention her late husband very much as she doesn't remember that much.

The GP is more than likely correct, she would be better off in a care home. Obviously MIL doesn't want to go as she has no insight into any of the current problems.

As the brothers have POA for finance, I suggest they start using it to support her care and stop doing things themselves - pay a cleaner to clear the fridge and empty the bins and do the laundry, cancel the newspapers, get prescriptions from an online pharmacy that delivers.

Basically they need to stop seeing themselves as the solution and outsource so they are not visiting and exhausting themselves.

Then if Social Services think she can manage with more care, they put that in (minus the brothers) and the results will be obvious very quickly.

The final choice of what your MIL does is up to her (as long as she has capacity). The final choice of what your DH and BIL do is up to them.

The only control you (or rather your DH and his brother) have is to choose to stop propping up an unsustainable system. No one is going to have that conversation with your MIL for them and no one is going to take them seriously until they actually stop.

What do the brothers think about this? Are they willing to step back from active caring?

If so they probably need to have another go at explaining this to MIL. No soft-soaping it, they need to explain to her what a detrimental affect it’s having on their lives and their families lives. But only as a prelude to telling her that they are stepping back and what will happen instead: if they want her to absolve them and tell then it’s fine to stop doing this they will be waiting a long time.

At the same time they need to alert Social Services, and prewarn them to get more care in place. TBH I’m surprised they have offered help with laundry, housework, shopping - I’ve not heard of that happening.

You are absolutely correct that the bigger picture is not being considered- the house, her health (other than what the carers observe), etc. and this is not the responsibility of SS. This is the reality of an older person, living alone and becoming less able to deal with all these things. Presumably the sons will still visit. If they have financial POA, can’t they go ahead and organise the purchase of a new washing machine etc?

If she can make her own decisions that’s it. End of. The law is there to protect people to be able to make decisions even if unwise. If it’s gruelling, stop. Stop. Tell SS you’re not doing it anymore they will have to add support. Or you can pay privately. She isn’t at risk if she can’t get out of bed. She has carers doing the day to day care. She obviously would rather live this way in her own home then go to a care home. Unless she has something that means she doesn’t understand the implication of her decision then she should be able to live as she wants

Ah the capacity trap - which basically translates as long as you can express an opinion on your care or treatment, irrespective if it's inconvenient, silly or unsafe, your opinion is the one that's followed.
Precisely this.
All you can do is withdraw care and hope it wakes up both the elderly person at the centre of it all, social services and the GP.

Capacity assessment is supposed to check that you understood and weighed up the information and came to a decision.

All too often it's a superficial 'they said they want this'. With no corroboration from those around them to check they weren't talking complete bollocks.

Tell me about it! Just before Christmas my mum told the SW that she manages her finances using her computer. She has never done Internet banking and her tablet hasn't been used for at least 6 months as se thinks it's broken, DB looks after her bills. It only needs charging but I don't charge it for her after she used it to find someone to do a small job in the garden and they charged her £000s. She also told them she does 2 activities every week. One stopped running over a year before and the other she hasn't done for nearly 20 years. Also does all her housework when she has a cleaner that does everything including laundry (sourced when the house got really grim abd no clean clothes). All taken on face value while I was struggling to deal with actual unsafe behaviour that had triggered the assessment