We've become carers, and I don't know how we're going to cope

[Gazelda]

MIL has been very ill. Has been in hospital for about 2 months but recently discharged.
In our opinion, she's not safe to live alone. But she is insisting she wants to be at home. She has capacity so SW are complying with her wishes.
She's immobile and doubly incontinent.
She has the highest level of carers from social services, but still falling out of bed, not eating/drinking etc
Me and DH both work FT. Have a school aged child. Live 40 mins from MIL and don't have downstairs loo so she can't move in with us.
We're 1 week in and she's had falls, 2 ambulances, we've each had to rush out of work to go to her. DH is in tears every night feeling he's letting her down but also trying to keep his job.
How the hell do we cope?

You don't. Her needs are too high and she needs to be safe, so you get more care for her and preferably a place in a home.
No-one ever wants to go into a home but the fact is lots of people, once they're there, are actually happier and more secure. If it's the best thing for her and she can't be safely alone and you can't be there 24/7 - which you can't - you push for it.
And someone will come along with the practical advice soon - the hows and whos - but I just wanted to say that. Best of luck OP.

Thank you. You have no idea how wonderful it feels to be heard.

You can’t.

You MUST make a stink and advocate for your MIL and find assisted living in a suitable home. Near to you.

It’s heartbreaking. You’re doing your best. Don’t feel guilty.

Go back to social services and tell them what's happening, it's clear evidence she cannot manage at home despite what she says. Her safety is paramount and neither you and DH nor MIL herself can ensure that so she needs to be somewhere that can. It's never an easy decision and of course you want her to be happy but she can't be happy if she's not safe. And you and DH need to be kind to yourselves, there is no perfect solution here (just the safest one) and that is no ones fault

Do only what you can do. Your MIL is a grown woman who will have to live with the consequences of her decisions just like she presumably has throughout her life. The options are there for her just as they are there for you. Your option is to be realistic about what you can do and to maintain that boundary. That will help her to be realistic about her options and choices. It sounds and feels hard but your lives falling apart to maintain hers isn’t really a good long term outcome for you.

I really feel for you. We were in a vaguely similar situation a few months ago. You are in no position to offer the level of support she needs. That's no one's fault and nothing to feel ashamed of. You need to contact Social Care and make them aware of what has happened in the past week. She is not safe to live alone, and you and DH are not able to take on her care yourselves. Be very clear with them about this

Unfortunately, DH keeps caving into pressure from SW.

She has capacity and has said she wants to go home.
So here we are. Trapped.

You just have to wait for this level of care at home to be seen to 'fail' (which it soon will) so that Social Services deem it in her best interests to move to a care home.

As others have said, contact SS every time there is an issue and emphasise that she is a risk and no longer safe with this level of care at home.

The thing is that even if you had a downstairs bathroom and bedroom and you also didn't work so that you were at home all day, she still wouldn't be safe at home. Either you would hurt yourself or she would - one or the other, and probably both.

I really feel for you and for her, too. It might be a difficult adjustment in a home but she'll be well looked after and then when you visit she can enjoy your company (and vice versa) without the dread of something going wrong.

I have no advice OP but my heart goes out to you, that is so very very hard xx

Its awful but I would disengage. The problem is your husband who is being too soft by not insisting SS get more involved and place her where she will be safe and properly cared for.
I would be telling your husband from now on he can deal with it all if he is not willing to get a bloody backbone and get her sorted.

@Gazelda

Unfortunately, DH keeps caving into pressure from SW. She has capacity and has said she wants to go home. So here we are. Trapped.

I think the only way is to tell Social Services that you can't cope.

It may seem harsh, but have you told her that you can't cope? You should. She may want to be at home with a live in carer but she cannot be at home with family to act as carers.

She has capacity to say "I want to be at home" but you don't have capacity to look after her. That's three full time jobs to cover.

Unfortunately you have to not cooperate with SS in order for them to act.

If you keep rushing over every time you're called then they won't bother providing adequate care. It sounds like she needs 24hr care.

Who is calling you to go over when she calls? Is it SS or MiL?

@terrifa

Unfortunately you have to not cooperate with SS in order for them to act.

If you keep rushing over every time you're called then they won't bother providing adequate care. It sounds like she needs 24hr care.

Who is calling you to go over when she calls? Is it SS or MiL?

It's the carers. We've already got to the stage that the care agency have said they can't support her. So SS are finding another agency.

When the carers call you need to redirect them to the SW/SS.

Tell them you are unable to come and to either call SS or an ambulance if they cannot lift her.

It's the only way to get SS to provide full time care. Or they may decide that she must go into residential care if she's unsafe at home.

Can you tell her what it's doing to her DS? I have promised my DC that when it comes to it, I will be reasonable and take their advice.

I wonder if your DH ever made her some sort of promise about never putting her in a home? My DM and DSF made promises to each other about going into a home together. Those promises could not be kept and should never have been made!

If DH doesn't want either of you to be honest with his DM and continues to cave, perhaps you could suggest he resigns from his job to become her ft carer? That might shock him into action.

Otherwise she'll be back in hospital in a matter of days and things will just go from bad to worse. You can't do this with two ft jobs.

Does she have money? My in-laws had a live in carer for a while which worked really well, but only for as long as they could afford to pay. It used up all their cash savings, cost about £850 a week which was way cheaper than 2 care home fees.

I agree you need to step back a bit, try to avoid plugging any care gaps. Only visit as a son/daughter in law, not as a carer.

The carers/Social Services are obliged to let you know when there is an issue such a fall, but it does not mean you have to rush round there. My mother's care home always call me to inform me but they don't expect my immediate attendance, they are keeping me informed.

Your objective is to get her the right level of care - 24/7 supervision in a care home - and that will be achieved more quickly if you step back, difficult though you may find it.

Newly "If DH doesn't want either of you to be honest with his DM and continues to cave, perhaps you could suggest he resigns from his job to become her ft carer? That might shock him into action."

That sounds a good idea.

Is this about funds? If she was self funding then surely SS would suggest full time care? I don't know what the max level of care is but someone who is immobile surely needs 24/7?

In my experience, SW will only act if she is in danger although the ambulance calls would suggest that. They will do everything to keep her out of care, including throwing you under the bus in terms of stress and throwing your MIL under the bus by listening to her requests to be at home rather than looking at her actual needs.

As @Twelvetimes said, the current situation needs to be seen to fail before they will act.

It is absolutely not acceptable but we just went through this and had to be seen to walk away leaving my mum totally alone before they did something. It was awful.

You could make a complaint that she is getting injured and ambulances are being called, clearly the package of care has already failed.

@Gazelda

Unfortunately, DH keeps caving into pressure from SW. She has capacity and has said she wants to go home. So here we are. Trapped.

Your DH has to stop caving. In my experience SW will only do something when you actually say "we cannot and will not support her in the home"

I attended a meeting like this. I lived 100 miles away so could do nothing anyway. My brother, unfortunately, lived ten minutes away. I had to support him in saying that he disagreed with the decision to have my mum continue to live independently and that he could not and would not be filling in the gaps in care. It was simply impossible for him to do so without losing his job and potentially the roof over his head. Yet still, if he showed the slightest guilt or gave the impression that he might pop in even once a day, they jumped on that.

It was only when he said a firm no to any support, with me backing him up, that SS told her that she couldn't be safe at home, and put her in the position where she had to agree to other arrangements.

Don't listen to those who are saying get her into a home. She has the capacity, she does not want to go into a home. People are allowed to make bad decisions.
You do not have to help her sustain those bad decisions though. So she falls, phone an ambulance, but let her and NHS and SW deal with it. It is not your job to plug the care gaps or to help her maintain bad decisions.
Think of it as being like a parent who drinks too much. You cant stop them drinking, but you don't need to go round if they are falling over every day because of their drinking.
Visit as often as you did before she went into hospital as a relative. But don't plug the care gaps. I know it is hard. But it is the only way things will change.
My FIL refused to have any carers when he came out of hospital. At first relatives helped him. Then we all gave him notice and said we would help him find a carer but we were not doing the caring. He still refused. We stopped plugging the care gaps. Within two weeks he had carers going in regularly.
Sometimes people need to feel the full impact of their bad decision making.

When you say she has capacity...

How honest have you and the social worker been about the reality of the situation?

At the moment, the predictable trajectory is that she will fall and break something, requiring hospital treatment and potentially being bed-bound. At that stage, it's a wait for pneumonia to set in and she will die within a short time frame, probably in hospital.

So when she says she has capacity and wants to be at home, does she understand what she's asking for?

If she has mental capacity to make the decision however unwise others deem it the decision has to be with your mother in law, essentially she's choosing to stay at home knowing that her mobility/health is poor.
It does sound likes she's struggling and this is evidenced by the package of care breaking down and the ambulances being called in a short space of time.
That said it's a really big thing to be discharged after a period of ill health and after 2 months away from home, is there a possibility that she may have potential to recover any further? Could a period of reablement/rehabilitation help? Do social care have an occupational therapy service who could visit and assess- also look at why she's falling out of bed if she's immobile? Maybe there's some specialise equipment that they could supply? If she's incontinent has she been assessed and got prescribed pads to meet her needs?
It's really difficult as a family member to sit back and watch someone struggle / put themselves in risky situations, I think you have to be frank with her and tell her your concerns and also that you are unable to keep responding to these emergency calls, it might also be worth letting social care know that they can't rely on you to be part of the package of care.
Does she have a pendent alarm to summons help if she needs it in an emergency?
Hopefully you get sorted soon

Unfortunately having just gone through this with my father who went into a care home and was planning to come home despite needing 24hr care
If they are deemed to have capacity there is fuck all you can do about it
My dad was in hospital 9 weeks then rehab 8 weeks could hardly see, let alone walk , kept falling over but still had capacity to make
his own decision no matter how stupid it was
You have to completely refuse to do anything in order to get her the help she needs abs even then if she wants to go home she can