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?

Yes, it sounds as though she really needs full time care, in a care home.

Of course. But I think you should tell them asap as it will take time for them to organise an alternative. You have done all you can for 12 years and now she needs more than you can provide. Don't let them pressure you into taking her home temporarily or anything else as it will be much more difficult then.

You don't have to organise this yourself OP unless you want to.

Yes you can say you can no longer manage her needs at home. she can be discharged to a 'discharge to assess bed' where a thorough assessment of her current care needs will be done and an appropriate place found for her. You need to get the hospital to refer her to a social worker as soon as possible who be able to help guide you through all the options. Good luck.

You can refuse to have her back. It'll be massive pressure and manipulation to get you to take her and you'll need a will of steel because it's not fair on the hospital but ultimately you can't cope and she needs a care home. Start the ball rolling.

We can't afford to pay for a care home, and she has no funds or property to sell. I agree though that she needs to be in care. Is the council obliged to pay for her if we can't?
I was told by the care assessor who came about a year ago that what is important is my mother, not us. The care plan is based on what is best for her, and our needs are irrelevant.

If that’s her home, then clearly the hospital will assume that she will return there. She will need a financial assessment to determine how much she will have to pay towards her care.

If your mum can't afford to pay and you are looking to the council to pay you will need to sort out an assessment of her needs.

Does your mum have a social worker?

The levels of care usually go up through carer visits to 4 times a day and then care home.

97, wow, that is amazing! Financial assessment and care home needed op. This must be such a stressful situation.

Did she own her own home before she moved in with you? Presumably she has a pension - that will be used to supplement the fees. You cant be forced to pay for her care but if a needs assessment indicates that she can come back and be managed with carers in her own home, then the LA will be reluctant to agree to fund a care home place.

Of course you have the right not to have her back with you but you need to make that clear right now and put the wheels in motion for an assessment and identifying a care home for her. The hospital may be able to advise you but you can phone adult social care too to ask how to proceed.

The council will have to find her a place. Tell the nurse/social worker at the hospital pronto. Tell them you can’t cope even with increased visits and she will need a care home. They will try to guilt you, don’t let them. Don’t let her come home ‘whilst they find a place’ as it won’t happen. They will have to find placement in a council funded place, it will mean you don’t get as much choice as you are not funding it.

This is why you need a social work referral as soon as possible as they will be able to help with all of this and yes they will pay if she has no funds herself.

I do think it’s incredibly disheartening to hear that her needs are what is important and not yours. It’s this sort of attitude that leads to carer burnout. Then there’s a crisis and you refuse to have her return. Whereas if you’d of been properly supported, you’d agree to have her back knowing that if you then couldn’t cope properly support would be in place.

She did not own her own home, and she only has pension credit because she spent most of her life in South Africa. She has a small pension (£250 per month) from my father, who died 30 years ago. We have been supplementing her income since then.

Course they do, to cheaper for them for you to keep her.

This is what I mean by a will of steel. They will say absolutely anything to guilt you. You say no and you stick to no
You don't take her even on a temporary basis. It's lies.

The best thing for your mother is to be professionally cared for.

I was told by the care assessor who came about a year ago that what is important is my mother, not us. The care plan is based on what is best for her, and our needs are irrelevant.

That's excellent news then, because you both are no longer able to provide any care so what's best for her is a much increased care plan out of your house.

Tell the hospital asap and the ward will liaise with social services
phone and speak to the discharge co-ordinator if there is one,

you could also phone your local social services, they’ll have a linked team at the hospital probably.

Just get the message out there ASAP and be really firm.

I would taker his with an enormous pinch of salt, or even outright fury.

What is most important to the assessor are your mum's needs, and part of their job might also be minimising costs for the council/SS.

The hospital will also apply pressure for a swift discharge.

For you it's about balance. Don't be pushed into anything you don't want, and defo don't agree to anything "for a trial" or "short term" because you will struggle to reverse it later.

As above, speak to the discharge coordinator in the hospital and say what you’ve said here, you can’t meet her needs and she needs a home. They’ll advise what type of care home she needs, then you have a period of time to visit them and choose which one (with space) you prefer. They then do a financial needs assessment and find where/what they can. If your mum has less than £23k I think it is funded by the social pot.

but short answer is no, you don’t have to have her at home and don’t feel shame about that, caring is exhausting and not an obligation xxx

Of course they said that - it's manipulation on thier part to reduce costs!

Someone may say it is heartless, but if you cannot cater for her needs then you must be resolute - you refuse to take her back. I have heard of cases where they have piled an elderly relative into an abulance and delivered them back - you need to be prepared to absolutely refuse to allow them in the property if necessary. It isn't heartless to stand up for what you know is right for her; and it also isn't heartless or selfish to be realistic about what you can offer.

You need to speak to a social worker and the discharge planning team ASAP.
The hospital will push to send her home, and claim that 4 visits a day will be sufficient. My MIL is in a similar position, but with her husband who had a massive stoke 6mths ago. He is bedbound, cannot feed himself and hasn't had a shower since moving home. Home modifications can take years apparently. My MIL has severe arthritis, can't use the hoist and can barely cook her own food- let alone care for her husband too- yet the hospital pushed for her to take him home.

My own mum 'nearly' took my nan home to care for her at 97. 1 hospital staff member said 'well, she likely won't have long'. My nan lived till 102!

Everything you've said here is correct.

If your mother has no means of paying then she will receive public funds.

I have to ask though, did your mother gift you the house you live in? When it became apparent she would have care needs later on?

Do not understand any circumstances accept her back at home. Hospital need to make a social care referral. This will all happen faster if she's in hospital as they won't want someone is isn't acutely ill taking up a bed.

If she has no income/assets, social care will fully or part fund her care.