End of life pathway please help

[Notmanyleftnow]

My mum was told she had probable metastatic cancer in three places in March she declined further treatment or investigations. She developed neurological choreiform sytmptoms but refused tests suggested by neurologist. She wrote an advanced statement saying she does not want to have investigations or treatment into cancer. Or be in hospital
A week ago she collapsed and is now in hospital. She cannot walk and has lost some speech. She had planned to take her own life, but left it too late.

I told them about the advance directive and that she doesn't want to know what's wrong with her. But now I think did she just mean the cancer and the brain thing? Is there anything else????
They put her on end of life pathway without telling her, I assume because of the advance directive. But what if it's because of what I said??

i visited today and She remembers doing the advance statement but now says I want to know what's wrong with me and what's happened to my speech. She said it three times so I told them and wrote it down. Nurse said doctors will talk to her Monday. I gave her the note stating my mums new wishes and they're putting it in her file.
I am terrified I have fucked all this up and that I should have told them to tell her before this.
I am in torment. The whole situation is killing me. I am now bleeding rectally which is probably from constipation as can't eat properly.
I can only visit every other day as she is an h9ur and a half away and I don't drive because of autism and visual processing issues I have had lifts and spent 500 in taxis. I have asked them to move her nearer to me but it depends on bed availability.
She's stopped drinking because she doesn't like the thickener they put in her coffee. She's not eating because she thinks she has but she hasn't.
I feel so guilty like it's all my fault.
Will they not give her fluids through a drip because it's end of life care? Dying of thirst is supposed to be awful.
Please help me.

Oh.

I spent two hours with friends this evening and I felt guilty for relaxing and feeling comforted, and laughing at Wallace and Grommit. But I think you need to nourish your soul to keep on going. I don't mean it was spiritual watching Wallace and Grommit. But being surrounded by loving friends and being warm and eat
ing two mince pies and feeling safe for a bit.

I think it is a protective reaction when you can compartmentalise life at times like this. There is nothing wrong with it and allows us to cope with what’s going on.
You need to make time for yourself to rest both body and soul.

Delighted about the mince pies , Wallace, Gromit and good friends! OP, you've done us all a favour with your honest and open questions which have received the answers you deserved.
I hope your Mum is in your nearest hospital now.

@Notmanyleftnow , I should have put that

She won't be moved today as its Boxing Day. I'm hoping for tomorrow. I remembered my Care Coordinator is clinical lead for the NHS Trust, so I have emailed her to ask if she can get ir sorted.

On 23rd i phoned palliative care at the hospital, but they said she hasnt been referred to them so they can't help.
The ward are now saying they can't fast track her to the local hospital, only a care home, due to policy.

And yesterray the nurse said she isn't presenting as someone whose end of life is imminent...!
I'm so confused. The doctor last week said she was on morphine, but the nurse yesterday said it's prescribed if she wants, but she has never had any!
I tried talking to social services re discharge but they said the hospital has to refer her to them first.
I'm going with a friend tomorrow again but now I don't believe them that she is dying cos they seem to have changed their ideas. It is driving me insane.

I have had almost the same thing happen with my mum! It feels like emotional torture, doesn't it? Sending a virtual hug...

Thank you so much. Same to you.
Why are they lying? Or have they changed their minds? I truly don't know what's real any more. Xd

Not lying in my case but no clear consensus between the professionals on the time scale or what consitutes palliative vs end of life care.

@Yoonimum I'm so sorry. Is your mum still alive?
I've just bought mine a nightshirt and some camembert as she won't eat the hospital food. It's all utterly surreal.
Maybe in the New Year the regular hospital staff will be back, and we can get some answers.

Yes, she is but has not eaten for 6 weeks and is only taking tiny sips of fluid a few times a day. Mostly sleeping and no longer really wants to chat when she is briefly awake. She has exceeded expectations in that we were originally told she was unlikely to survive beyond mid Dec. In the last week we thought she was actively dying but have been told she is not and may last several weeks more. I'm not blaming anyone for the uncertainty but the emotional toll is huge.

Dying can be an up and down process… it’s not linear.. people can have a day or two of feeling better then get worse again.
its hard over the holiday.. can you ask to speak to a doctor caring for your Mum?
Medicine is often unpredictable.. it’s based on patterns that we recognise .. but we also recognise that people don’t fall into patterns!
Doctors rely on results of investigations like scans and blood tests.. they help make a diagnosis. I completely understand why your Mum refused ( and I think that you are both very brave) but it does make it harder.
What I would say is that this process is taking longer. I am worrried about you . You are being amazing, travelling so far. You need to look after yourself. Do one thing every day that is restful for you…have a hot bath, light a candle , lots dog cuddling. Go to your friends for more mince pies.. it sounded like that was what your soul needed.
it sounds that life is hard for you anyway. You are being brave and really caring for your Mum. Take care.

She is at home not far from us and we have support, so are lucky in that respect, but I really empathise with your feelings of confusion and emotional pain.

@Yoonimum I'm so sorry you are going through this too. It's a terrible and cruel rollercoaster.

@LunaTheCat thank you. I did speak to a doctor but it took 6 days from initial request for one to speak to me, and then he said she was on morphine which she isn't. The nurse showed me the medical chart. Not that i could read it but she obviously thought it showed evidence that she was right and my mum isn't on morphine.
I don't believe anything any of them says anymore. Because how can I know who to trust? They can't even remember she is vegetarian and they haven't got enough blankets so I took some in for her.
I've got to go back to that hell-hole tomorrow, and I'm longing to see her but at the same time it hurts so much to see her helpless and bedbound and exhausted. I saw friends today for a bit which was a good distraction. But this just goes on and on and on and I don't see why I have to be the responsible one when I can't even care for myself without support. But there's no one else to sort things. I hate this.

Just seen mum. Spoke to nurse and apparently she is still dying and it could be any time.
But, as not having medical treatment, doesn't need to be in hospital.
Tomorrow there will be a meeting 8am then at some point tomorrow the district liaison nurse will phone me with a list of available care home places.
Part of me thought she wasn't going to die now because of what the other nurse said.

The morphine may be under a different name. They use opioids that are longer acting, morphine on its own is a very short acting drug.
Have they talked about hospice care? Is there one local to you?

From memory Oxycodone was the drug my DSis was on until they started a subcutaneous drip. It is a modified type of morphine.

OP I'm sorry you've got so much to be dealing with and all on your shoulders too since your siblings don't seem very involved. Must be difficult when you're so ill yourself. There's some further practical things to consider though.

Your mum can go to a care home in your area but I don't know if the hospital/social services will organise that, they might only organise for one in her area. If you find one in your area where you want her to go you can tell them. Then they can pass her onto social services in your area who can organise it. You can also attend the 8am meeting if you want, you have a right to be there if you want to have your say about it all, but if you don't want to that's fine too.

Since your mum is definitely dying and they've confirmed it now, have you given any thought to her house/flat? Does she own it or is it rented? If she claims housing benefit that will stop when she goes to a care home so the place would need to be emptied and given back to the landlord. If you've any time and ability to do it, it might be worth it to start the clearing out now so it doesn't all have to be done all at once, whilst you're grieving. If she owns it there's less of a hurry. Just check with her so you don't accidentally get rid of something that she intends to leave to someone in her will.

Your mum will probably want some of her favourite things to go with her to the care home anyway, plus toiletries and clothes.

Has your mum made a will? As long as she's of sound mind she still has time to make one now if she wants. If she's already done it, it's helpful if she can tell you where it is.

Do you know what her wishes are for a funeral ie cremation or burial? And whether she has the funds to pay for it. There's grants available if she/you doesn't have money to pay for it. If she owns a house the money for the funeral can come out of the sale of that.

It might be that you don't have the sort of relationship where you can have these conversations with her, but it's helpful for afterwards if you can.

It's better eg to know that documents for a funeral plan are in the top drawer of her desk, instead of having to search the whole house for documents that maybe don't even exist because you've no idea if she has a funeral plan or not.

Sorry I missed a bit. What did the nurse say which made you think your Mum may not be dying?

Two days ago she said my mum wasn't presenting as someone on end of life normally would, because she was eating and drinking and communicating.

We have talked about funeral plans in the past and I know where her documents are. She just wants a direct cremation
She owns her house.
I can't go to the meeting because it would cost £300 in taxi fares. She normally lives in the same county as me, so hopefully that will help re near care home.
Thank you so much for all your helpful advice

She's not on oxycodone.
The nurse said she's only on paracetamol and omeprasole.

OP I'm so sorry you are going through this. My darling Dad passed last year and although from diagnosis to him passing was quick it is still very fresh in my mind how traumatic organising care for him was.
MacMillan were the only people who actually helped us. They arranged a hospice as he didn't want to go into hospital and I didn't want him in there either. Is a hospice not a possibility for your Mum?

@Bluemat thank you. There is only one hospice in the county and it is over an hour's drive from here. I will ask the discharge nurse about it tomorrow when she phones me though.

I was so grateful that my Dads last days were spent in the hospice. We could stay as long as we wanted to and there was even some flats we could move into on site. We were about 30 mins drive away so less of a trek.

Sending you lots of love OP