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 have to do anything. All the while you are propping up an unsuitable situation you will be left to it. When you step right back and allow a crisis to develop then only will things change.
Surely MIl isn't happy for you to live like this anyway and keep dashing round, is she?! No parent would rightly expect that of their adult DC??
The duty of care lies elsewhere. If you want a different outcome then time to make different choices. And you do have a choice.

Every time your dh drops work and rushes to pick his mum up he is confirming to SS that they are right that his DM has the family support she needs to stay at home. Is he willing to give up his job for this because that's what he might need to do?

I suggest you plan a holiday, become genuinely unavailable for a time (so your dh can't fly to the rescue) and SS will miraculously organise some respite care for MIL. Quite often a short term stay in a home turns into a longer one when the person realises it's not as bad as they'd feared and they quite like the company. Or after a stay in hospital would you be able to persuade her to stay in a care home just for a short term stay until she feels better and is strong enough to cope at home ?

Either way, your dh has to ask himself what is the best thing to do for his mother. It's not always going to be what she wants.

'No parent would rightly expect that of their adult DC??'

Some definitely do. My MIL loves a fuss, but does absolutely nothing to help herself. It's maddening

If she has capacity then she is choosing to live like this. She's immobile and doubly incontinent but wants to live at home. That's like me saying I want to represent my country at gymnastics in the next Olympics when I'm middle aged and was no good at gymnastics to begin with. You are not choosing to live like this. You or your husband could lose your jobs and where would you be then? Your husband has to wake up to his responsibilites to you and your child. The next time he's in tears over dear old mum, point out his responsibilites to you and your child and he needs to man up (I hate that phrase but then I'm unsympathetic to teary eyed men who won't face unpleasant facts). If he can't bear to do it, you phone the social worker and tell her that both your jobs are on the line, you've got a child as well and you simply can't continue to provide support by dropping everything and driving for 40 minutes to make a simply unworkable situation work for the social worker. Him caving in all the time is simply prolonging the agony of this situation. At the very least, you should stop going on those trips to see her in hospital.

I can understand elderly people wanting to remain at home. If you don't have the funds you will likely be in a home where a lot of residents have some dementia. It's not fun.
And it is because most older people have visited people in residential homes that they do everything to avoid going into one. I think younger people often have unrealistic idealised view of the realities. But there comes a point where people have no choice.

I'm not sure this is a SS issue really as if she has capacity to decide then a social worker can't force her into a care home anymore than the family could. Your DH needs to have a very firm and frank conversation with his mother about his concerns and the impact it's having. And then accept that unfortunately she has the right to make unwise decision like everyone else who has capacity can

As hard as it is you must not go running at all. Leave all care (or lack thereof) to the ss and the care agencies. At the other end of 20 years plus of watching this happen to someone else who had family running in every time something went wrong. Because they did this the ss and care agencies let them and failed to provide that which was needed and that which was being paid for.

I have been where you are 4 times. A friend is in pretty much the same situation right now. I was a community nurse before I retired and many times I had relatives/sons/daughters in tears in my clinic because they were absolutely desperate. I remember a GP colleague writing to SS stating that in his opinion one man would have a heart attack if they kept pressuring him to look after his elderly mother. The SW will keep pushing you and DH to take on more care until you break. They have to because it is all down to money. You have to keep on saying no because it just isn't possible.
It is likely to mean that MIL will have to go into residential care, but it sounds as if this will have to happen eventually. Your DH caving is only delaying the inevitable and probably at a very high cost to your child, your jobs and your marriage.

If you both stop responding, it will end up with no care agency being prepared to provide a service. So she will have no choice but to go into a home.

Next time the carers / MIL phones, you take a deep breath and a say you can't get there until the weekend. If they phone at the weekend, you can't get there until Wednesday. The others are so right - if one of you goes over every time they call - they will keep calling. And the appropriate level of care package will not be offered to your MIL.

The thought of an elderly lady bed bound, doubly incontinent, not eating and drinking, living by herself with carers calling in 4 times a day (the standard maximum if you see what I mean) is ludicrous and cruel.MIL.

You sit DH down and spell out the implications for your family life if he's dashing off to his Mum's every day - 40 mins there, 40 mins back, an hour or so there - that's every evening gone. His work may be sympathetic for while, but that will not last, look at a max of a week or 2. So does he plan to resign and if so what will he do about paying bills, etc. If your MIL is doubly incontinent, falling out of bed, not eating or drinking she won't just need one carer there 24/7, she'll need 2. So he'll be there and he'll still need another carer to help lift / turn / change etc. If this is a step he wants to take, your family need to walk into that decision with your eyes wide open. And be under no illusion it will not be an easy road with such a frail patient.

You need to watch the concept of capacity; while it's a worthy concept, it is fundamentally flawed in the way it is followed by SS etc. They all take the view that if someone can express an opinion, then that opinion must be adhered to. Irrespective of whether it is diametrically opposite what anyone else in the family wants or needs, even if it's patently obviously unsafe, irrespective of whether the patient is confused, demented or just plain stubborn. Basically the support at home has to fail and fail big time, before SS will call time and agree that the situation is unsafe and over-ride the care needer's preferences.

Start asking around locally for the names of recommended care homes near you ( or at least the ones to avoid).

You have my sympathy - your and your DH are in for a rough, tough ride

Capacity IMO means being able to make a logical and safe decision, not just being able to state a want. But unfortunately this definition is stretched to the limit until there is real danger.

@endofthelinefinally capacity does not mean that. People make bad decisions all the time. They still have capacity.

I know. That is why I said IMO.

I realise I worded it badly by using the word "definition". It is an awful situation because so often it seems that families have to go through so much stress and exhaustion, sometimes for years.

I am a believer that if someone wants to be in their own home then they have a right to be. I have been through this with my Mum and we had to fight but in the end, we got a full care package.

However, your MIL also deserves the correct level of care. What needs to be decided is where the care crosses a line between adult social care and health care needs which should be provided under Continuing Health Care.

The difference between the two in funding is that Social Care will give the most they think your MIL deserves and you can top that up. CHC has to provide the full care package your MIL requires and they can not rely on family or friends to provide additional care but you also can not top-up the care with any other funds.

CHC is notoriously difficult to get, but there is a charity funded by the NHS called Beacon that is really helpful and will provide advice in order to help you with the CHC assessment. Also for my Mum, we used an Elder Care Consultant who helped us through everything and we ended up, despite the fight from CHC, with 24 x 7 at-home care for my Mum.

From experience, I know that those that shout the loudest and push and push and push and push are the ones that are successful. They don't make it easy, but they do tend relent and you have to use any weapon in your arsenal. Including keeping every correspondence, complain up, complain to councillors, MPs, use doctors, district nurses, community matrons, use Subject Access Request when required. Don't be quiet and you will be successful because your MIL has rights and deserve the funding.

I am sure other people have mentioned this but if you have not sorted out Lasting Power of Attorneys for Finance and Health and Wellbeing then that should be top of your list.

Good luck this is not an easy time, no one gets you ready for this part of being an adult.

@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.

No, you aren't. If Social Services haven't done one already, ask for a care plan, and make it clear that you acting as carers cannot be part of that plan. Likewise if they have done a plan that assumes you will be carers, tell them it needs to be amended immediately as that is incorrect. Make it clear that if they want to comply with her wishes they will have to provide overnight care.

Does she have money of a home to sell?
She could move into supportive accommodation with carers still visiting

Or with money cam empty a live in assistant

@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.

You're only trapped if you allow yourself to be.

1. Tell SW yourself that neither of you is carer, MIL is probably saying you are.
2. Key safe fitted by door, either MIL or SS pays, so tell SW it's needed. Give code to all necessary people. Get extra key cut to put in it.
3. Fall alarm, get one if she doesn't already have one. MIL or SS pays.
4. Set up call alarm to call a service, who then call ambulance, who let themselves in with key from key safe. Nobody calls you to deal with it, you don't leave work to help. Hospital calls you as NOK and you visit when other commitments allow. You tell hospital that you're not carers and can offer nothing other than weekend visit twice a month for cuppa and chat (or whatever your usual fully-healthy-coping-alone arrangements with MIL are).
5. Hospital transport or taxi takes MIL home after stay at hospital. MIL/SS/hospital arranges each time. I'm unsure who pays or originally sets up hospital transport, but it isn't you.
6. When ambulance service get pissed off with this and hospitals flag it to SW, eventually she is put in a home as deemed unable to keep herself safe.
7. You find out SW name, you attend care plan meetings making them rearrange if necessary so you can attend, you reiterate that you're not carers.
8. If possible DH gets POA for (in this case) health, which means it's not MIL decision to go home on discharge from hospital it's DH decision. So he can kick up a stink if that's planned and he feels it's unsuitable. But she has to agree to give him POA in the first place.

@Namechanger0800

I'm not sure this is a SS issue really as if she has capacity to decide then a social worker can't force her into a care home anymore than the family could. Your DH needs to have a very firm and frank conversation with his mother about his concerns and the impact it's having. And then accept that unfortunately she has the right to make unwise decision like everyone else who has capacity can

Of course she has that right, but she doesn't have the right to assume that her son will jeopardise his own home and family to facilitate it. The conversation will only work if OP's husband is prepared to say to her that it is impossible for him and OP to provide care so she will be dependent on whatever SS offers.

I would heartily recommend that you call Age UK - they are incredibly helpful with this sort of thing, and can help you navigate social services and all other relevant agencies while also keeping hold of your sanity!

www.ageuk.org.uk/information-advice/

@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.

Speaking from my personal experience, social services absolutely do not give a single flying shit about the family members and whether they are able to cope, all they are interested in is a tick in a box. She wants to go home, she's home. Tick. Done. As far as they are concerned, they have shifted all responsibility onto you and they don't really want it back.

You have to insist.

And get poa for finance unless you want social services to do that

@DaisyNGO

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?

It absolutely isn't about funds, from our side. She has a small amount of savings and owns her flat outright. We all want her to be safe, comfortable and happy, however much it costs in £. Funding is possibly/probably primary SS concern

^this.
Only when my DM gave 48 hours notice she was withdrawing all care did my GM rightly end up in a care home and my DM got her life and mental health back.
Such a shame her resistance to outside help badly tainted their relationship those last few months and not sure my DM ever forgave her. People 'scrimp and save all their lives' for a rainy day to buy in care as needed and ensure comfort and safety in old age. It seems like it's pouring down in your scenario and needs outweigh wants.