Can I refuse to have my mother stay with me?

[Wheatlands]

My mother, aged 97, is currently in a high care unit that she was sent to after spending three weeks in hospital with pneumonia. When my husband called yesterday to ask about the plan for mum, the nurse said they are still giving her antibiotics, and she is having 'mobilisation therapy' and then they will be looking into her discharge. From what the nurse says, they intend to discharge her back to us, but with more carer visits. Before she went into hospital she had one carer visit a day.
Both my husband and I work fulltime. I work from home, but for 10 to 12 hours a day teaching English online and I risk my work if I have to leave a meeting to care for mum.
We have cared for her for 12 years, with her progressively needing more and more care. She falls often and I can't lift her on my own. She is incontinent and even with the nappies, needs a lot of cleaning. She needs attention during the night.
We are both completely exhausted - I have been battling a viral chest infection since before Christmas. I feel completely terrified. I don't want her to come back because we just can't cope any more. There is no other family help available.

Do I have the right to refuse to have her back?

You can no longer care for your mum at home since being in hospital. She will need adult social care assessment. They will assess her finances. Stand firm that you will be unable to manage . They want to discharge her asap but can only do so if safe - and it's not .
Good advice on here so far .

OP- Thats what I thought too. Could they say that as you have been supplementing her money all this time, you should be helping to fund her care home? Do they have the power to assess your financial situation? Given that she needs total care, surely she is eligible for NHS continuing care? They won’t offer that though, you would have to fight for it, and appeal if turned down. It’s an incredibly stressful situation, I sympathise.

The really sad state of social care in the UK is such that they really will tell you outright lies and make demands and tell you that you are obliged to do things that you are not, and so on and so forth.

You are NOT obliged to accept her back at home. You can TELL the social workers that you will no longer provide any care for her. You can TELL them that it isn't her home, it's yours, and you will not be accepting her back there. TELL them that it is their responsibility to find her somewhere to discharge her to. Use the phrase UNSAFE DISCHARGE frequently. Don't allow them to guilt trip or draw discussion out of you.

Others are right, FIGHT them tooth and nail. Run everything hospital or social services tells you through a bullshit detector in your brain. Read up on what SS are obliged by law to do for her. Read up around the whole subject, including what they can compel you to do - it's NOTHING.

Sadly it's often a case of last one left holding the baby, has responsibility for the baby. At the moment it is the hospital: DO NOT LET IT BECOME YOU. DO not let it become you "temporarily". You are in a FAR stronger position if you do not allow yourself to be left holding the baby. if hospital transport turns up on your doorstep, don't even let yourself be seen.

You are not obliged to fund, or to provide, her care. The council is. Social Services are obliged to find her somewhere that they deem to be suitable for her. If that is a care home, they must provide funding for at least one, if she has less than 23.5k savings. It may not be a care home of your choosing or within a reasonable distance for you to visit.

I know this sounds extreme. It is. Hopefully you will have a nice understanding contact at the hospital and social worker, but you may get useless ones who want to shove the problem onto you asap.

Do you have power of attorney?

Please join the safeguarding futures and social care group on facebook. The admins are experts and there are a few other experts in there who give their time and expertise for free very generously.

IME there is enormous pressure to release patients and clear beds. I understand this and when I was caring for my FIL they tried to discharge him very quickly and without a care plan in place. I said no and that we would need to agree a clear plan. A lot of pressure was placed on us and we kept insisting we needed support. Eventually we agreed a plan we could all live with, but it was tough to agree this.

Yes, you have this right.
My own mother, a narcissistic abuser, wouldn't stay with me and my husband under any circumstances.

I would strongly urge you to consider being 'away' or 'on holiday' if they try to discharge her into your care, even if they say it will be temporary.
And it is the best idea yet to see your GP and stress you absolutely cannot cope any more. And also to your DM's adult care social worker when she gets one. That's where the guilt will come from , as well as the hospital,
i had a huge row with my DM's social worker who insisted she had to come home because that 'was what she wants.' She had dementia and no insight whatever into her condition.
Edited for typo.

Having seen this from all three sides in the last 25 years, can I just point out that this is the fault of the system - not the individuals you will be dealing with.

• The NHS is an acute care service. It can only function when patients leave their care at the point they're medically fit for discharge.
• Local Authorities are under tremendous pressure and are chronically under-funded for providing social care. They have only two tools available for managing their budget, the three D's of Deny and Delay.

The Family becomes the easy option to clear the DTOC. It's not what anyone wants, but until someone finds the solution to seamlessly joining up health and social care in the UK it's where things are at.

Being polite and firm is your best tactic, alongside the very good advice of making sure your mother doesn't have a key to the house with her whilst in hospital.

Edit:
Just to add. As well as getting your mothers Care Plan updated, you also need to get your Carers Assessment updated to reflect that you're now older, you haven't been in the best of health of late, and your capacity to provide care has reduced as your mother's care needs have increased.

A thought- Can relatives who could afford care home fees but don’t want to pay, because their money is for their own retirement, be forced to pay?

Absolutely do not be guilt tripped into taking her home. They will push and push, bring out any manipulation tactic necessary and from personal experience say some awful stuff. Stand strong. Your needs being irrelevant is absolute rubbish. You could refuse her back and wash your hands of her if you legally wanted to. They cannot make you care for her.

You have the best chance of getting this sorted whilst she’s in the hospital. It is an absolute nightmare to sort out if she’s at home and you’re caring for her as they will do as much as possible to palm it off on you and not class it as urgent. Ring the hospital back and tell them you can no longer house and care for her.

Don’t let them in your home for a home visit either as this will be them checking if it’s suitable. You’ve them it isn’t and that’s enough. Hold firm because they won’t just toss her out on the street. Be careful about what you offer. Don’t say oh we might be able to do this for a few hours a week or may be able to do this. Tell them no. We cannot offer any support. You won’t be doing her any favours if they can shift even a little bit of the responsibility on to you. Once everything is in place of course you can go and help her but for now, you have to say you can’t offer anything.

Your needs are not irrelevant if they mean that your mother will not receive the best/most appropriate care. It sounds to me that your mother’s best interests would now be served by moving her to a care home.

@Wheatlands

No you absolutely do not have to have her back although the hospital and SS will try and guilt trip you into it.

Just say No and keep saying No. Your home is not suitable and you can no longer meet her needs as she needs round the clock care and that is too much for you. You are both working and it is impacting on your health. Stick to your guns and stay strong.

And don't be talked into doing it as a temporary measure because it won't be temporary, not even if they suggest you do it while they wait for a care home. Once she's out of that bed they will wash their hands of her and leave you to it.

But as PP have said, tell them now you won't be taking her home with you as you can't meet her needs, then they can get SS involved.

I don’t see how that could possibly be enforced.

No. Nobody is obliged to pay for a relative's care.

With the exception of a spouse whose holds over 23.5k is in a joint account with their partner. In fact I think it might be that only half of the money in a joint account is taken into account, so it might need to be in excess of £47k. Long story short, if in this position, seek legal advice and consider dividing up the money equally into each person's sole accounts.

They can't touch anybody else's savings. They can't force the spouse to sell their home to pay for care. They can't touch anybody else's pensions.

Yes, you absolutely can, OP. I did this myself. In my case I was being asked to supplement care visits by doing personal care myself. I had previously done personal care when my mum was much more mobile and compliant. My mum was completely bedridden due to various disabilities, in a state of constant delirium (later she was also diagnosed with Alzheimer's), massively oppositional, and in a property completely unsuited to her needs. I am a parent and work full-time in a job with very unpredictable hours, and I also pointed out to them that visiting carers never attempted to move my mum on their own on the basis that it was unsafe so I couldn't see how it would be considered safe for me as an untrained person to do what they wouldn't. We just said no and repeated it as often as necessary.

By the way, my mum was discharged to a care home and they did so much better for her than I ever did on my own. You hear a lot of terrible stories about care homes and I don't doubt that some are terrible, but my mum was state-funded and her home treated her like a beloved family member. It was really lovely to see.

I can't stress enough how helpful the Safeguarding Futures Health and Social Care Support group on Facebook is. If any of you reading are wondering about your own parents or relatives' care, protecting their assets, how a care home will be funded etc, go and ask in that group.

@Wheatlands agree with so many other posters. Do not get into any dialogue about what care you might or might be able to provide. State that your own age and health needs mean that you cannot provide any support. Emphasise that your dm would not be safe - in my dm's case it was 'unsafe overnight' that made the difference. Do not enter into any discussions about adaptations that might be made (e.g. pressure mats by the bed that alert you if she gets up during the night, or hoists to help with lifting / moving her). Do not accept having your dm home on a temporary basis - no matter what promises they give you about interim support - it often does not materialise, and if a carer fails to turn up you know it will be you filling the gap.

It is really hard to maintain that line, and from my own experience it made me feel heartless and uncaring. It may be helpful for your dh to be with you and to repeat the mantra 'it is not possible for her to return to our house, it is not safe, it is not possible for us to provide any support or care.' I felt really awful, but it was an amazing relief once dm was in residential care and I knew she was safe. I could then visit frequently.

That's outrageous. Of course your needs ate relevant. Tell them you have carer burnout and can no longer accommodate her needs at home.

You absolutely need to refuse to allow her to be discharged into your care. We had to do the same with my late MIL who had suffered a fall resulting in broken bones and they wanted to send her home to her 3 storey town house (which she should never have been living in but that's a whole other story) and assumed we would care for her despite us living a 30 min drive away and me with a toddler and pregnant with DC #2!

Do not allow them to bully you.
You have a choice here.
They don't care about you or her.
They just want her off the books.
Refuse completely and block their calls if necessary.
Your mum needs more care than you can reasonable provide.

My friend blocked the calls a year ago as it was her bachelor uncle and the hospital staff were so rude to her.
Do not be bullied.

Have a look at what care facilities are close to you and take publicly funded residents - some are a mix of both public and private. You'll have to go through social work to get a place but it's more about moving that debate on so it's where she's getting moved to, rather than having her back with you

You've had a lot of good advice so far from people who have, no doubt, been through it themselves. This bit above is also a good idea. We were in a similar situation with my DF. No way could he be discharged back to my DSMs home as she could no longer physically look after him. It sped up the process with SW when she and my brother contacted nursing homes in the local area themselves. They spoke directly to the homes and found the one they were happy with that had a place for him. The fact they were able to go to the SW and say, we've found him a place in principle, 'all' you have to do is push it forward, really helped.

And finally, you probably now this already, but as others said don't be guilt tripped - they will really try to make the four visits seem like it will be all on them and nothing on you. Not the case in our experience with our DGM. They were almost always late, sometimes didn't come at all, did the bare minimum because they had no time time to do otherwise - and of course sometimes she needed 'care' outside of the allotted visits anyway, obviously. It just doesn't work.
(None of which is a criticism of the carers btw, who were all trying their absolute best).

My DM also lived abroad before coming to live with us in old age, until her needs were beyond what we could provide. As she had no home her financial assessment was based on her savings. She was self funding for a short time but once her funds ran out the LA topped up the cost of her care. DF had paid extra in his lifetime to give her a good pension so all of that went towards her care fees. If he hadn’t, she would have received the same care, but the LA would have paid more. Third parties are not required to pay for care fees once the LA is involved.

Why is it always the DD or DIL that ends up doing the care?
@Smokesandeats
It's because (generally speaking) women are a soft touch compared to men, it's easier to intimidate us, to make us back down. Furthermore we are seen us inherently nurturing and self-sacrificing.

Indeed. Not to be harsh, but why on earth should a 97 year old in this condition be treated aggressively for pneumonia? Not fair to her or to the public purse.
Insanity.
(Sorry OP)

I think the social worker meant that what is relevant in the eyes of SS is what is in the mother's best interests and not the daughter's welfare. It isn't SS's job to care about the welfare of the relatives. Yes I totally agree with you that a daughter who is driven over the edge by care demands is not in the mother's best interests but in reality that is SO far down the list on SS's radar that it's fallen off the bottom of it and them some. That's why people MUST dig their heels in and very clearly REFUSE to allow SS to palm off on you.

(I'm coming across as I hate Social Workers but I don't. Believe it or not I have a lot of time and respect for them in general- it's just that they are operating in a broken system and I have read time and time again of horror stories about SS palming off elderly and disabled care to family members who are broken under the strain of it).