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Original poster

End of life pathway please help

195 replies

Notmanyleftnow · 21/12/2024 18:13

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.

OP posts:
MichaelandKirk · 03/01/2025 11:50

AngryMum is right. My late Mum was on a pathway. I spoke to someone at the GP surgery who had a plain talking senisble conversation with me regarding the next few days.

Mum had been in pain but in the last few days wasnt. I didnt delve as to what she had been given but she was not in pain (because I asked her). Mum had lost half her body weight.

She always smiled when she saw me arrive at the care home but it was clear she was near the end. One very stupid carer did try and make her drink a Complan type drink but I had a quiet word with the Nurse in Charge and although nothing was said we knew her time had come.

I wasnt there when she passed. I had been there the day before but a member of the nursing staff was with her. She was crying out weakly in the end for God to take her. He did

Angrymum22 · 03/01/2025 11:36

Notmanyleftnow · 03/01/2025 08:26

Thanks. My sister thinks people just don't want to eat ir drink when they're dying. Maybe she's right and I'm just still trying to save her.

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As the body starts to shut down it can no longer digest food or absorb water. In fact water causes problems. Their energy needs are very low. If she asks for a drink offer it but don’t encourage it because they tend to take it to please you.
As long as she is receiving adequate pain relief she will be comfortable. If she becomes agitated, moans and screws up her face then she’s in pain. This is when you can help by calling the nursing staff so they can give her more painkillers. At this point they no longer stick to a dose, they give painkillers until they are out of pain. Please don’t worry about this, it is the cancer that will end her life and not the painkillers.

Yoonimum · 03/01/2025 09:46

Notmanyleftnow · 03/01/2025 08:26

Thanks. My sister thinks people just don't want to eat ir drink when they're dying. Maybe she's right and I'm just still trying to save her.

Show quote history

The urge to nurture and protect is very strong but it isn't always helpful. People do stop eating and drinking when they die although it is not clear cut. My mum is in her last few days, sleeps very deeply and is barely awake. When she is, she will ask for sips of water but they make her cough and retch repeatedly now. She can barely speak she is so weak, which is a change in the last 48 hours. We've all agreed to actively avoid disturbing her in the hope she stops waking up to ask for water. I only kiss her lightly, stroke her hand very gently and whisper hello now. The rest of my visit I just sit with her in silence if I can - it's the kindest thing.

MereDintofPandiculation · 03/01/2025 09:34

Notmanyleftnow · 03/01/2025 08:26

Thanks. My sister thinks people just don't want to eat ir drink when they're dying. Maybe she's right and I'm just still trying to save her.

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Yes, she’s right. The desire to eat and drink stops.

They’re thickening the coffee because she’s losing her ability to swallow.

They will give her drugs to control any pain from not drinking

See if you can find someone to explain what will happen from now on. I had this little talk with our nursing home manager on Monday, it was very useful.

MereDintofPandiculation · 03/01/2025 09:32

Jingleberryalltheway · 29/12/2024 19:49

I think what your Mum probably needs is a care home which also does pallative and end of life care.

Nursing home rather than care home? Nursing home has nurses on site, care home doesn’t.

Original poster
Notmanyleftnow · 03/01/2025 08:26

Jingleberryalltheway · 03/01/2025 07:28

No one is killing your Mum. She is dying and this is what it looks like. It’s shit but this is what happens.

From my experience you will need to contact PALS yourself. Our hospital trust has a email address and online form you can fill in, have a look and see if yours does.

I’m thinking of you and your Mum 💐

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Thanks. My sister thinks people just don't want to eat ir drink when they're dying. Maybe she's right and I'm just still trying to save her.

OP posts:
JoyousPinkPeer · 03/01/2025 08:11

Notmanyleftnow · 21/12/2024 18:25

Thank you, can cancer do that then? Take away someone's ability to walk? And lose speech?

Yes it can and does. Try and take care of yourself too, it's important.

Jingleberryalltheway · 03/01/2025 07:28

Notmanyleftnow · 03/01/2025 07:21

I emailed my care coordinator last night to ask her to phone PALS for me. I don't know if she will but she must. I think they are killing my mother through benign neglect. The discharge liaison nurse promises to meet me and then doesn't show up. The system is so broken and I can't cope with the torment of seeing my mum not properly cared for.

No one is killing your Mum. She is dying and this is what it looks like. It’s shit but this is what happens.

From my experience you will need to contact PALS yourself. Our hospital trust has a email address and online form you can fill in, have a look and see if yours does.

I’m thinking of you and your Mum 💐

Original poster
Notmanyleftnow · 03/01/2025 07:21

I emailed my care coordinator last night to ask her to phone PALS for me. I don't know if she will but she must. I think they are killing my mother through benign neglect. The discharge liaison nurse promises to meet me and then doesn't show up. The system is so broken and I can't cope with the torment of seeing my mum not properly cared for.

OP posts:
Original poster
Notmanyleftnow · 31/12/2024 20:59

@Bluemat thank you.
@Yoonimum I'm so sorry you are going through this too.😢💐

OP posts:
Yoonimum · 31/12/2024 20:19

Yes, I'm at that stage with my mum, too, and I feel exactly the same. I can't wait for it to be over and yet I'm heartbroken to be losing her. Just awful....

Bluemat · 31/12/2024 19:21

Notmanyleftnow · 31/12/2024 18:59

Every time i see her she is weaker. She can barely whisper a yes now.
This is utterly exhausting. And heartbreaking and confusing. If only love could heal, she'd be back. Watching the person you love most in the world slowly dying in front of you is such a hard-to-believe thing to happen. You want to save them and you want it to be over at the same time as never wanting to let them go, and being terrified that the final losing of them will feel even worse.

Edited

Sending you the biggest hug. It really is a heartbreaking thing to go through.

Original poster
Notmanyleftnow · 31/12/2024 18:59

Every time i see her she is weaker. She can barely whisper a yes now.
This is utterly exhausting. And heartbreaking and confusing. If only love could heal, she'd be back. Watching the person you love most in the world slowly dying in front of you is such a hard-to-believe thing to happen. You want to save them and you want it to be over at the same time as never wanting to let them go, and being terrified that the final losing of them will feel even worse.

OP posts:
Original poster
Notmanyleftnow · 30/12/2024 18:53

@Angrymum22 thank you for sharing your experience. I wish that nurse hadn't said anything, because I started to think my mum would recover.

No one rang me today and when I rang the ward, they said they expected the discharge nurse hadn't got round to it yet. She said my mum was mostly sleeping and that they have enough cheese so could I not bring any more...

I won't contact her GP yet because they were useless when I needed their help a few weeks ago for her. And because every outside agency i have rung that isn't the ward, they all say they can't do anything because the hospital hasn't contacted them.

A support worker is taking me again tomorrow, so I will ask again what's happening.

OP posts:
Angrymum22 · 29/12/2024 20:08

Notmanyleftnow · 29/12/2024 16:26

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.

Show quote history

I suspect the nurse you spoke to has little experience of some one who is in end of life pathway. Both my mum and my sister were chatty and were eating and drinking ( although not very much) in the days leading up to their deaths. I would say it was only the last couple of days when they lost consciousness that they stopped eating and drinking.

No one is text book but in the 24hrs leading up to death then it does seem to follow a pattern.
Staff trained in palliative care are experts at seeing the signs, and to be honest you just get a feeling that it won’t be long.

For your mum to be discharged she will need a care package in place and the occupational health team need to assess her needs in order to place her the right sort of care home.

It may be worth contacting her GP to see if they are aware of the care package being put in place. At least they may be able to put you in contact with someone who is involved with her discharge in the community.

Original poster
Notmanyleftnow · 29/12/2024 19:51

Jingleberryalltheway · 29/12/2024 19:49

I think what your Mum probably needs is a care home which also does pallative and end of life care.

Thanks. We will have very limited choice, but hope there will be somewhere.

OP posts:
Jingleberryalltheway · 29/12/2024 19:49

I think what your Mum probably needs is a care home which also does pallative and end of life care.

Original poster
Notmanyleftnow · 29/12/2024 19:48

There doesn't seem much point, because they only do four days at a time I think it would be more disruptive to her to go there and then leave again so quickly. I couldn't leave my dogs and stay there either, even if they have room.

OP posts:
Bluemat · 29/12/2024 19:40

Notmanyleftnow · 29/12/2024 19:31

@Bluemat I'm glad you had that for your dad.
I googled our hospice. They appear to do overnight pre planned respite care only, not looking after someone till they die.
www.skandavalehospice.org/how-we-help/overnight-respite/

Would this be a possibility for you and your mum?

Original poster
Notmanyleftnow · 29/12/2024 19:31

@Bluemat I'm glad you had that for your dad.
I googled our hospice. They appear to do overnight pre planned respite care only, not looking after someone till they die.
www.skandavalehospice.org/how-we-help/overnight-respite/

OP posts:
Bluemat · 29/12/2024 17:24

Notmanyleftnow · 29/12/2024 16:48

@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

Original poster
Notmanyleftnow · 29/12/2024 16:48

@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.

OP posts:
Bluemat · 29/12/2024 16:39

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?

Original poster
Notmanyleftnow · 29/12/2024 16:30

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

OP posts:
Original poster
Notmanyleftnow · 29/12/2024 16:29

recyclingisaPITA · 29/12/2024 15:00

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.

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

OP posts: