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 tell the hospital she cannot live in your home any longer, not even temporarily. You also contact social services immediately and tell them your mother needs a care needs assessment based on the fact that you can no longer accomodate or and can no longer provide ANY care. State that if she is discharged from hospital without an arranged care homeplacement she will be homeless. She can no longer live in your house. Be direct and clear. You have to be hard nosed about this. As a pp has stared you will be manipulated and emotionally blackmailed by Social Services in an attempt to get you to continue caring for her. If she has less than £23,500 the local council will pay for her care. They will carry out a financial assessment requiring 12 months of bank statements and maybe other bits of evidence.

Yes Remind them @Wheatlands that you work just like THEY do

This is going to sound awful.... but make sure she does not have keys for your house on her. I have heard of folks being sent home in a taxi if they can get in as 'it's their home'.

Also again it sounds awful but reclaim your living room. It is not a bedroom. It is a workroom and a living space. It's a rental so they cannot promise to make alterations like a stair lift (which will never materialise) so therefore is unsuitable for her needs.

They will push you to accept it. They will promise to send someone round to help you with a carers assessment and pay you carers allowance (less than £70 a week) so that you can care for her... but at the end of the day it isn't enough - you cannot do it, it is not fair on you or her.

And don't get involved in the care home. They will want you to be guarantor ... which again will cost you money. You can of course spend your money helping your mum however you want - but being guarantor will entitle them to bill you as they wish for anything the council don't automatically cover. She will also be entitled to retain a small portion of her income each week for items such as clothes, toiletries, haircuts etc.

Good luck OP. It's very hard to say no to these people. Remember they have had years of training and that you and your husband DO matter. And the best place for your mum is no longer with you!

What everyone else said. Prepare your script and repeat it broken record style. Not safe as I work full time, I can't lift her, not possible. Age UK have good information available and will give individual advice too. Start with

https://www.ageuk.org.uk/information-advice/care/arranging-care/homecare/support-after-hospital-discharge/

I was in a similar position with my DM although she was a lot younger than yours. DM was in hospital after a fall. I was on call to her 24/7 and unable to leave the house without a sitter. She lived in the granny annex, not our house as such. I was advised to tell the hospital that I would be withdrawing all personal care. If she was able to get herself from her bed to the bathroom and back into bed I was able to have her home but I could not have 2 hourly calls through the night needing help to get to and from the ensuite toilet, changing her into clean bed clothes and falling asleep in time to receive another call for the same thing.

The original discharge plan was to keep her in hospital until the care agency could increase visits for 4 a day. However as time went on it became apparent that that would not be sufficient and she moved to a rehab ward and then to a nursing home.

She was classed as fully funded by the local council although she had to contribute the majority of her pensions and was allowed to keep £ 30 per week which was more than enough for her clothes and chiropody.

The discharge nurse arranged for the social worker and took responsibility, along with him, for mum going into the home and stressed to her it was not my choice.

Ps. When my mum had a double mastectomy they wanted to discharge her home the same day! She can’t walk, has dementia and had no carer coming late in the evening. The hospital said they would drop her at the front door of her house 😳. It took 10 whole days for them to arrange a package of care for her. They used words like ‘neglect’ and ‘duty’ and she’s ‘taking a sick persons bed’ to me and my sister. Utterly disgraceful of them. We took my mums keys from her, and removed them from the keysafe so she had no way of being dumped at home. They rang around 7-8 times a day to put pressure on us. In the end I went no contact with them. That was when they finally realised they couldn’t send her home and I wasn’t going to bring her back to my home. You have to not cave in and think about your mums needs being met. And when they are met, you can visit her knowing she’s well looked after!

Surely it can be classed as coercion

You have the right to say that you’re unable to manage DM at home & request that she’s taken into a state funded care home .
The person who told you that your mother’s needs are the only ones to be considered is wrong . Mum might be their priority and it certainly eases their workload to discharge her to you , but your needs matter too and anyway it sounds as though your DM needs will be better met with professional care .
You've done all that you can for 12 years so no need to feel guilty , it’s more than most people ( myself included) would be prepared to do

If it is your house then it is absolutely 100% your choice whether or not she can live with you. If I were you I would use this opportunity to sort out long term arrangements. If you have her home with you, who knows how long it will take to have an assessment via the community rather than hospital route (coming from a social worker).

Of course you do. Tell them asap. You have done as much as you can, now time for full time professional care.

This is an excellent post. OP, you did your best for your mum for 12 years. That's enough. I saw friends of ours deal with their mum giving care for 7 years....it wasn't fair on their son, who spent from 11-18 year old in a house basically given over to being a care home. He couldn't have people over or do normal things as a teenager, and was helping to care for his gran himself around studying for A-levels.

this happened to my friend but she stuck to her guns and pushed back each and every single time. The person who needed care did not own their own home or have a rental / lease, they were staying with the family member who turned into their carer by default.

Push back push back push back. Absolutely refuse to have her back. You need to think of your own health and you are unable to manage your mother's health needs, even with carers visiting.

I remember when my dad had had a fall & wasn't fit to go home alone, it was met with astonishment that neither myself nor my sister could/would move in!

My brother was discharged from hospital, back to his flat at 1am, completely unable to look after himself/cook/bathe.Getting out of bed to go to the toilet was a struggle as he could barely walk after being bedbound for many weeks.
No chance at all that he could manage his own medication which was about 15 tablets a day.

They simply rang me the next morning (I'm his only relative and next of kin)
to say they'd taken him home and it would be helpful if I could pop in a few times a day to check he was doing ok.

They too seemed gobsmacked to hear that couldn't happen as I live 300 miles away and have children to look after. I was met with disbelief and silence as if the possibility that there would be nobody to look after him hadn't entered their heads. He has no wife or children, just me so obviously they just assumed I'd be there to provide what he needs. It took them a week to get some care visits in place and I got a meals on wheels service organised for the interim.
I mean, to be expected to take on siblings care as well as parents and children seems to be pushing family responsibilities a bit far. But they'll try their luck!!

This is exactly what worked very well for my mum. Pension credit and social housing. She was fully funded in a care home we chose. We did supplement for her to have her own toilet and hand basin. She was allotted a small sum a month for spending money.

You've had some great advice OP - stand firm!

Yes, you can refuse to have her back. Tell them that her needs are too severe for you to manage and request a new needs assessment with a view to a care/nursing home. If they try to argue/persuade etc, repeat you can no longer manage. But please, please tell them today or tomorrow! Otherwise she is bed blocking someone who may be in the same sort of situation.

@Wheatlands

I am a Dr. Yes, you absolutely can state that you no longer feel able to care for your mother and you can refuse to take her home (unless there are some fairly specific circumstances, for example if your mum owns the home you are all living in, was normally resident there and has capacity to state that is where she wants to live).

If I were you, I would ask to speak with the consultant (or senior registrar) in charge of her care, or her named nurse. Be very clear about you concerns and position regarding your mum’s future care and be honest that you do not feel able to have her at home once she is fit for discharge. They should then arrange for an assessment of her needs in relation to appropriate care settings and social work can be involved in looking for an appropriate placement, once she is fit for discharge. You may be able have some involvement with which care home she moves into- should you want it- how much of a say can depend on whether there is a power of attorney in place or not. Your mum may need to contribute financially, depending on her situation, if she goes into care- but that should not be a barrier.

It really is better, for both you and your mum, that you are honest about your ability to manage her ongoing needs. When things reach crisis point, it’s always so much more complicated and difficult for everyone involved. Better to say “we can’t do this”and move things forward in a planned manner. There is no shame in saying you can’t do more-whether that is from day one, or after a long time of caring. I think 12 years is a long time to be a carer for a frail and/or elderly person, emotionally and physically.

The hospital tried this with a friend of mine. I had to be very firm and say that he would be unsafe with carer visits etc. the social worker was more help
Than the hospital discharge coordinator. They discharged him to a nursing home. Which he is still in.

Be clear with the nurses that you no longer have the money/capacity/space to house your mother now that her needs have changed. There will be Adult Social Care social workers on site at the hospital. They will do an assessment, as well as determining whether your mum has more than circa £20k in savings. It sounds like she does not, so it is the council’s responsibility to house her.

That social worker who told you that it makes no difference what your needs are is batshit.

I haven’t read all the replies. Am I correct in thinking that no one can be fired to look after an elderly parent, and if that parent has no assets, the state has to fund care, including a home?

Theres no way someone can make children pay for their parents care out of their own pockets is there ?

So if an elderly person has no assets , no property, the authorities must pay ?

They may also try "we have to discharge to the address where she's registered with the GP," backed up with "she will be discharged to the street, it has been done." That was the one that did for me and I wasn't even a relation. I was in tears and the discharge individual just pressed on. So follow all the advice. They cannot impose on you, you are not a slave of the state. I have been told that ambulance staff have taken patients back to hospital if they can see that the place is not fit.
They seem to have a Victorian view of duty.

You've been absolutely saintly, and I echo everything that's been said by pp. She needs a social care assessment and a care home place. Savings and pension income etc (hers not yours!) are taken into account to calculate her contribution, and social care have to make up the shortfall.

You've had some great advice here about keys etc. MIL was once discharged after a fall and 6 week hospital stay, with absolutely no notice - the ambulance team simply got in via the key safe, tucked her up in bed, hooked up her oxygen tank and left her there, despite zero mobility and requiring all personal care and feeding. They didn't even switch the lights on. We live 200 miles away and both work. Thankfully DH managed to get her at-home care package restarted the same afternoon, but the discharge was a shambles.

The op is under no obligation to financially provide for an elderly relative.
They have no powers to know anything about the op's finances and when the mother is put in a care home, the op should not sign anything at all.
A neighbour's mother went into a care home, they gave the neighbour a form to sign. It later turned out that this form obligated the neighbour to pay a top up fee to cover the shortfall in council funding

Completely unbeknown to any of the family, my late Aunt then 97 was brought to her daughter's house by ambulance whilst her daughter was out.

She was actually at the hospital meeting with the discharge team, and then they sneaked her mum out whilst she was distracted!!

I just want to send you a virtual hug. All of this sounds so incredibly hard.