Good Afternoon, Can anyone help me with this please? My Mum had a massive stroke last week and I’ve been told will not regain function because of where the clot is in her brain. So basically she is left just like a shell and is waiting to die now. I was put under a lot of pressure to have her home and have the front room run as a hospital. I put my foot down and said no basically as I couldn’t handle it and the house was unfit for this. I have put my foot down about a care home and the care plan at this stage is die within the NHS or if she begins to meet the criteria later than die in a hospice. I have been told that if she doesn’t die after months and months of therapy etc then they will discuss with me about what’s going to happen and she might have to make some payment and I would have to sell the home. Is this correct please? I thought they would have to pay for all her care needs under the continuing care guidelines? I’m in absolute pieces about the whole thing. Please will someone who knows what they are on about advise me. Thanks.
I do hate bullies, where is the compassion? It is NOT up to NHS Nurses to discuss money! Has mum had a Continuing Healthcare Assessment? You cannot be forced to care, so stick to your guns and keep saying No! I had a 5 month battle over mum’s care, I know how horrible it is, please look after yourself.
Thank you for replying, Bowling Bun, I’ve had to take 3 days out of visiting because my mental health has tanked and I cant deal with any of it anymore. I’m not having her home and I’ve told them I cant take it and they have a duty of care towards me as well as my Mum. I will stick to my Guns and if there’s anymore talk of this seek legal advise. Do you think its a good idea? My Mum cant respond to anything, there’s nothing left but shes still alive.
@Elizabeth_1602123, sorry to hear about your mum and the stress you’re under. I would suggest speaking to citizen advice or a solicitor for advice as this can be a bit of a minefield. I would suggest a hospice for her as some are runned by the NHS and they can look after your mum if there is a placement to be had for her. I don’t know where people think that we can turn a room in a house into a ward as it our money we use and not the theirs. Good luck and all the best
Hi Thanks, She’s not eligible for hospice as she doesn’t meet the criteria at this point. She’s been given weeks to live and I just cant take anymore of it to be honest. She’s classed as exceptionally severely disabled, she cant do anything for herself. I’ve also been given no support at all. I found the whole thing traumatising and I cant take seeing her to be honest. I have managed to pull myself together but its been exceptionally hard.
In that case she should be entitled to FAST TRACK CHC which can be arranged within 48 hours, IF she is suitable for a nursing home?
You need to sort things out with a funeral director asap, so that when mum dies they can take over immediately. Much easier than putting it off.
I’ve said its her wishes not to end up in a nursing home. That’s why she’s stayed in the NHS and they are continuing to do observations re her condition. I want her to die and I’ve said that would be her wish as well. They said they cant hurry death along and have to go at the persons own rate. They can though not treat infections etc or if she got food stuck etc. I’m literally broken by this, its exceptionally tough when you are on your own as well. The senior registrar has said that death is usually within weeks for this.
@Elizabeth_1602123 I’m so sorry to read what is happening to you and your mum. The others on here are quite correct, they simply cannot make you bring her home, it is their duty of care to look after her for as long as she has left. BB is right in that you need a Continuing Healthcare Assessment. My poor sister had a psychotic collapse in July 2021 and her husband was told to bring her home to spend her last few weeks. He went into meltdown at the thought and I supported him to resist until she was finally admitted into a Nursing Home, where she could be hoisted etc. She is still with us, bless her, a total shell of a human being but still breathing. If he had let them send her home, he would now have spent three years caring in a totally unsuitable environment. It is best for both of you for your Mum to stay put and you are right, they have a duty of care to you too. Sending hugs 
we are here if you need us.
Thank you. I’m sorry to hear what happened to your sister.XX. I told them to back right off as I couldn’t take it and that I was at risk of ending up in the Stroke Unit myself. The registrar has agreed to one update per week only and they are not to be ringing up or pestering me at all. I just cant take the stress of it. Last week I nearly feinted a few times and I’ve lost nearly a stone in a week. I was told initially that I wouldn’t have to pay anything as her condition was too severe. My mind is totally blown with it all. The G.P has also written to them on my behalf. Its been seriously bad.
Oh that’s awful. You must take care of you while all this is going on. Glad they have agreed to your “terms of engagement” and that your GP is batting for you too. Keep in touch. 
Thank you. I have felt terrible saying a few times, I just want her to die, but that is what she would want too. She didn’t want to have a stroke or be hanging on either. I miss her as well and keep getting chest pains and waves of grief. My aunt said you will just have to be strong wont you? Its beyond my capabilities dealing with this. I have told them I am at capacity. The nurse I saw on friday has written all this down.
Probably shouldn’t get into the Assisted Dying debate on here, but my sister has been lying in a cot, mumbling and staring at the same inch of ceiling for three years now. When I last visited her two years ago they told me she would be gone within the month. Even the nursing staff can’t figure out why she is still alive, but they keep doing what they do and she is apparently “stable and comfortable”. I wouldn’t let my dog go through this and I don’t visit any more because it broke me, over and over. If you crumble everything will crumble, so please just breathe and gain some strength. No one will judge you for your choices.
No, you shouldn’t have to pay any of your own money, EVER, As mum is so severely disabled and chooses not to move to a nursing home, that is her choice. My mum was in a nursing home for her last few months, she was a very private person, had a room of her own, staff very kind.
Thank You Love, I’m not interested in what other people think of me not visiting this week. I have to look after my own mental health as well. Its this bit about them making me sell the house at some point if she doesnt die that I’m worried about most.
Making you sell the house?!
More misinformation. IF she moved out of hospital it would be CHC funded if she can’t do anything for herself. Do you have Power of Attorney? Do you live in the house? How old are you?
Ask your GP to recommend a private counsellor if you can afford it. Mine was so supportive when my mum was gradually dying.
I live in the house with her, I’m 54, I don’t have POA, but I have an agreement with her to deal with all her affairs as I’m her next of kin etc. I thought it would be fully covered all her stay as Iooked into it. If they start up again, I will start taking legal action as I’ve got the money and I’m not putting up with it. I’ve told them as well that I’m not an idiot etc. You wouldn’t believe it would you? that things could be like this for an old lady 92 going into hospital to die.
No need to think about legal action.
Carers UK has a brilliant helpline who can explain things really well.
I too have met horrible nursing staff, you are not alone, but often they haven’t read the relevant rules!
So you don’t think they would be able to start selling the house over my head if she doesn’t die? The whole thing is making me lose my mind. I’m so sorry to put this on the people on here.
They can’t sell the house from under you, if you have been living in it for a certain period of time. I think I am right, but others on here are more expert in this area. Also the CUK helpline………