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.

Thats a big one
As most LA carers will not "give" meds only "prompt" meds. One instance the carer decided that included not popping the pills from the scheduling packaging and getting a glass of water.
The pills were kept out of the reach of the person due to not being able to physically extract multiple items from section of a 4/7 weekly tray.

Yes, I realise that, @AnSolas, but the actual taking of medication is presumably working day to day (for now).

One extra thing - if / when your MIL is interview re Deprivation / section make sure your DH / DBIL is literally in the room. As others have mentioned some very interesting tales get told about how they are managing quite well at home thank you.

I had an issue with DM when she listed all the food she cooked to an OT. It was pure fiction. Luckily I spoke to the OT. People sound plausible so they are believed. However in this case it’s not plausible she’s doing anything for herself. I really would talk urgently to SS and get her safely in a home. Care at home is minimal and she’s clearly not capable of living alone.

Oh my goodness, this sounds familiar. MiL told a consultant that she was doing physio three times a week, could walk with a frame and was fully continent - all untrue sadly. This is partly what precipitated the GP visit and how we’ve got to this place with the SW. She also told them she was having physio, but was pulled up by my BiL.

The trouble with dementia is that they truly believe that they are doing all those things! We found our social service visit no help at all. I wanted them to look behind the sofa where there were hundreds of old teabags wrapped up in newspaper and see the fridge and freezer full of out of date food, but the SS lady “didn’t want to stress M any more than she already had” and left. We found talking to a care home was much more productive- they came to see her and managed to talk her into a trial fortnight at their home while we “were on holiday and the carers couldn’t come”. They managed to arrange deprivation of Liberty after a couple of months.

@abovetheweather , after having spent many years caring for my own parents both in their home and after my mum died caring for my dad in my home I do understand your predicament.
My first thought is that you should all be registered with your GPs as carers, when I registered as a carer various agencies contacted me and had useful advice on potential help available. Speak to age concern they may be able to point you in the direction of charities etc who could offer support. Have a word with local churches (your MIL does not need to be religious) and ask if they have a befriending service. Basically get all the free help you can going in to her. If MIL has funds employ a home help a couple of times a week for cleaning, doing her laundry etc. Could she afford extra carers? If and when you think her condition is life limiting see if her GP will refer her to a hospice they were so helpful to me and managed to get my dad a live in carer (in my house).
She doesn’t want to go into a home and appears of sound mind so you can’t force her but you can arrange POA for any future need. It is really hard on the children of old people in these circumstances your husband is lucky that he has a brother to share the burden, I have a brother but he abdicated all responsibility.
PS
Suggest the brothers subtly clear her house of any rubbish because that will make one task that lies ahead easier when the time comes.
Well done to you all.

This is a much more common scenario than people realise. Very often the elderly person just refuses the care home option and wants it to be their child(ren) doing that care. Social services tend to go along with that as they are all told to save as much money as possible, and family doing it is cheaper. For that reason they will accept the person's word even if, looking more closely, the story about how they are looked after doesn't stand up. My dad said 'my daughter does that' to everything and that was that. So unfortunately, as pp have said, the only way to prompt change is for the sons to stop doing their current load. Sadly things have to go off the rails before you can get them to change.

The better level of care is probably because if your husband and his brother have been paying for the carers, that's bypassed the system. It should really come from the assets of your MIL and at this point they don't count the house, it's what she has in the bank and as income. If she has roughly under 23K they'll pay some, if under about 16K they'll pay all. It would be worth a fuller conversation with their finance people about this. You might be as well to agree trying their suggested higher level of care - that way, you've agreed to it and can later say 'look, we tried this but it just didn't work' in support of her actually needing residential care.

Good luck - it's upsetting to have to be the bad guy, but often it's the only option left.

A live in carer? Gosh! What world is this? Here SS will offer 4 visits a day. That’s it. They prefer this to suggesting a home if they think they will pay. It does take ages to persuade anyone to leave their home and the elderly get very attached to them. Then dementia kicks in and they are not able to make sensible decisions. Only ones they would have made 10 years earlier. SS do not want to spend any money. DM was never visited by a social worker or anyone to assess her ability to be at home. If you care, they let you do it.

I've never heard of a registered carer. GPs do not give a fig about that either. Anyone can contact charities and be “signposted” to help. Then the help says it cannot help. Even getting paid help for DM took 20 calls to companies and those professing to help. They don’t. So the only answer is a home. Your DH must start to get tougher.

Even without dementia elderly relatives can just say what they think will get the medics / SW off their back. Pretty much every appointment that SIL wasn’t able to sit in on, FIL would say he was absolutely fine, eating and drinking well, still able to drive, yes my DD is round every day, taking all medication as required. When in reality he was barely eating or drinking, confusing all his meds, smoking in bed (and falling asleep, had had multiple accidents in the car so SIL took his keys away.

it’s really important to be in the room during these meetings. You can outsource a lot of the care but this is when you really have to be present and to be heard.

Even though her sons have financial POA as she still has capacity, then any financial decision has to be enacted with MIL's permission....they can't just be paying for PA'S, washing machines etc without her say so (until such time as she loses capacity)

Has there been a multi agency meeting or have you just had a conversation with the SW and GP separately? It sounds like the SW has suggested continuing care funding, which is extremely difficult to get. They can carry out the initial checklist to determine if as assessment should be carried out but they do not determine if someone will qualify for it.
My suggestion is that your DH and BIL withdraw all the support they are currently providing so that both your MIL and SS can see just how incapacitated she is. Get a fall alarm for her, which she can use but let the service know you are not available between certain hours so they would need to phone an ambulance or police if she was to contact them. She may well be taken to hospital and from that point it is more likely that she will be moved into a nursing home, which by the sounds of it is what she absolutely needs.
What is happening here is that you’re all masking her true needs by doing everything for her, understandably so.

@Richtea67

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.

i was going off the above - that the MIL no longer handles any of her financial affairs. And “the washing machine’s broken mum, I’m going to get a new one delivered” is quite different to seeking a DOL and getting her to agree to move to a care home.

there’s asking, then there’s asking. My FIL generally would be considered to have capacity to decide where he lives, but DH and SIL need to be able to make some unilateral decisions, while keeping him informed of what’s happening around the house and who’s paying for it.

It’s a good job there are laws like the mental capacity act to protect peoples rights to make decisions for themselves cause it sounds like everyone here is happy to ship their loved ones off to care homes.

It only benefits the family if she goes in to a care home because you’re finding caring for her difficult. She is happy as she is. You can scale back the weekly visits to fortnightly. You don’t have to continue to support her if it’s too much. But unless there’s something you’ve not said I don’t see how she can’t be safe at home: she is in bed. She’s not up and about setting fire to stuff. So what if the oven breaks. You don’t have to take this on and it’s unfair to force someone in to a care home for your comfort.

I would rather live in my own home with some risk rather than be put in a care home and have all of my day to day decisions taken away from me.

Also GPs say everyone should go in to a care home but that’s not their remit, they don’t know the laws that social care work under so their opinion is pretty much irrelevant

What a nasty post. Of course people aren’t desperate for their loved ones to go into homes, they’re just worried sick about their loved ones. My mil used to cook things in her oven that shouldn’t be there (kettle once, the fumes were awful!). She would wander, get on buses. Then get lost. Neighbours were always on the phone worried about her. The care home sue went into was wonderful and she had seven happy years there. I don’t think she’d have lasted another two at home.

Ive been caring for my mother for five years. We’re just converting three rooms into a suite for her in the house we’re moving into. She’d prefer to stay at home, but her mobility and balance are dreadful (she has Parkinsonisms). The carers found her under her bed a fortnight ago, she’d fallen and couldn’t get up. My friend found her mother dead after a fall down the stairs, I don’t want to see my mum do similar. And I’m doing all her meals, personal care, shopping and washing. She literally just lies in bed alone all day. Her quality of life at her house has gone. Even with three or four carers a day I’d be worried about her. And quite frankly, I count too. I have practically given up my life for five years. We had carers, but they were poor generally and I still ended up doing everything. So it was easier to just take over.

But please don’t criticise people who are clearly worried and trying to get their parents a safer life, it’s horrible of you. Unlike you, I hope I don’t put other people through the mill when I need some looking after. I’m already looking at my house and planning what I might need in 20 years time (I’m mid 50s).

Namechangean did you read the first post?
Do you think carer is going to take medical responsibility for someone when they have no medical qualification?

The GP may have concerns about the level of care that she needs. She is bed bound and doing no exercise with failing physical mobility and failing mental capacity.

You are foolish to assume that a GP pratice is unaware of the laws around social care and capacity. Because when it comes to capacity it the GPs opinion which counts.
And GPs or A&E end up dealing with situations created by SS failure.

So this is a very important distinction between the two types of Power of Attorney.

With Financial - a capacitous donor can choose to activate the PoA and give control of their finances over to their Attorney. This is common if someone doesn't feel they have the mental "space" or accuity to take care of their own finances.

With Healthcare - it CANNOT be activated until the donor loses capacity. The decision-making process cannot be removed from the donor while they still have capacity to make decisions.

In this case, as your MIL has capacity, the only way forward is to discuss with her and attempt to calmly influence her into making more sensible decisions for her own health. It may help as she's known to the system to have a social worker present, who can help facilitate the conversation and also act as a lightening rod for any anger. This can really help as a person can release their anger at the "outsider" then listen more constructively to the family.

However if she won't change her mind, all you can do is wait for the crisis.....

If she has convinced the accessor she has capacity they will not force her to go into a home, she would need her rights curtailed through the court of protection, a deprivation of liberty order, to force her into a home. 4 visits a day is the full number of visits generally, and if needs require more then it's time to consider capacity

In this situation it isn't the GP's capacity assessment that counts.

The capacity assessment has to be by the decision maker and if social services are funding care, the decision maker is the social worker.

It's important for one of the brothers to be there for every meeting with the social worker so they can correct every time MIL starts talking convincingly about things that aren't true.

In my experience nothing happens until there is “an incident” which generally leads to the elderly person being hospitalised. At this point then it becomes clear to everyone that the elderly person is not safe at home and so sensible decisions can be made.

Unfortunately a number of people do not survive the incident and that can be very tragic. (Not least as their deaths are often painful, lonely and terrifying.)

There is a balance to be struck and, yes, the idea that my kids could force me out of my home because I’m a bit annoying is awful. But there may be a point where I am unable to risk assess any more and then my kids should be able to do that for me. I would like to stay in my home for as long as possible. But I don’t want to die alone in pain at the bottom of my stairs because I was unable to understand that I was too infirm to climb stairs any more. I like my house. But not that much.

I’m a bit confused here about the capacity element (though I’m in Scotland and maybe the law is different). Either your MiL has capacity or she doesn’t. If she doesn’t, the GP will have issued a Certificate of Incapacity, and if no PoA arrangements are sufficiently in place then a guardianship order is needed. If she does have capacity, then what the brothers have PoA for is irrelevant because they have no authority to exercise PoA whilst their mother still has capacity, does that make sense?

Capacity is time and decision specific, not a straight yes or no.

AnnaMagnani
In this situation it isn't the GP's capacity assessment that counts.
The capacity assessment has to be by the decision maker and if social services are funding care, the decision maker is the social worker.
It's important for one of the brothers to be there for every meeting with the social worker so they can correct every time MIL starts talking convincingly about things that aren't true.

I would say that catheters are medical devices. If the GP has decided that she lacks medical capacity a social workers assessment would not be in a position override that part if her care?

Capacity is unrelated to care needs. A person can require 2:1 full time 24 hour care and still have capacity - one of my colleagues is quadriplegic and has a PA with him or on call 24 hours a day. While he might make the odd terrible decision (in my opinion) by not taking the advice of his technical team 😉, he is perfectly capable of managing a multi million pound project regardless of his physical care needs

What complete and utter rubbish.