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Elderly parents

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:
MelainesLaugh · 04/01/2025 21:17

I’m so sorry OP. Give your dogs a big cuddle when you get home. Thinking of you

BeAzureAnt · 04/01/2025 21:14

Oh, OP, sometimes diseases take their own course unpredictably. I’m so sorry for your loss.

Bluemat · 04/01/2025 20:56

OP I'm so sorry. Sending you lots of love ❤️

MichaelandKirk · 04/01/2025 20:46

Mum is at peace now and no longer in pain. You were there at the end. Just a few snippets. A funeral director will guide you. Mine was truly fab and nothing I asked them was a problem and my situation was complex. I wanted a particular type of funeral.

Things will fall into place over the coming days and do come back with any issues as I am sure the lovely people on this thread will be able to assist. Most of us have been through this and out the other side.

Bulkypeepants · 04/01/2025 20:37

Sorry to hear this OP. I hope you can take comfort from the fact that your mum is at peace now 💐

Notmanyleftnow · 04/01/2025 20:34

She died an hour ago.
In another hour, a taxi will arrive to take m3 home.

OP posts:
Notmanyleftnow · 04/01/2025 17:33

Thank you all for your kindness.
Yes, it is an act of love. It feels kind of circular like she was there at the beginning of my life and I am there at the end of hers. It feels right. I don't know if she knows I'm here, but I can't control that. I can just be here.

OP posts:
EmotionalBlackmail · 04/01/2025 16:51

Thinking of you OP. You might find she passed away when you pop out to get something to eat or drink for a few minutes. So don't be surprised if that happens. Often a dying person somehow waits until their loved one is out of the room.

Angrymum22 · 04/01/2025 15:52

My thoughts are with you, OP. I don’t regret being there while my sister took her last breath. It is your last act of love for someone who has always been there in your life and that is something everyone deserves.
Hopefully you will look back on this time and be able to see just how important you have been.
My sister waited until we had all settled down to sleep in her room then she let go and gently passed away. It was a beautiful serene moment after so much pain and sadness. But I have absolutely no regret being with her until the end.
I hope that you have some support over the next few days. Please feel free to PM me if you just want a chat.

Nextyearhopes · 04/01/2025 15:34

Notmanyleftnow · 04/01/2025 14:13

Thanks. I took a diazepam so that I would get some sleep. They have kindly given me a mattress on her floor.
They say she won't wake up now. But she's still alive and I'm staying for now. Xx
@Yoonimum how are you doing?

Praying for you OP. I went through similar with my gran (although not cancer).
Your siblings are foul. You have done an amazing job and your dear mum will be so proud of you.

MichaelandKirk · 04/01/2025 15:32

You are there. You won’t ever forget that or regret being there at the end. Sometimes a very ill person waits until you leave the room to finally take their last breath. I wish you all the strength in the world to get through this.

PandyMoanyMum · 04/01/2025 14:27

Notmanyleftnow · 21/12/2024 21:22

Thank you. So there really, truly isn't anything I can do or could have done differently to save her.

No, you couldn’t do anything to save her. Her illnesses are making her sick enough to die. The end of life pathway is to try to reduce symptoms (pain, anxiety etc) and to allow a natural death. Treatments will be discussed but not given if the medics think they wont make your mum feel better or would simply prolong her suffering. If something might help her feel better, it would still be given.

Bluemat · 04/01/2025 14:26

Thinking of you OP 🌹

recyclingisaPITA · 04/01/2025 14:21

Thinking of you 💐

Notmanyleftnow · 04/01/2025 14:13

Thanks. I took a diazepam so that I would get some sleep. They have kindly given me a mattress on her floor.
They say she won't wake up now. But she's still alive and I'm staying for now. Xx
@Yoonimum how are you doing?

OP posts:
Yoonimum · 04/01/2025 10:58

Hope you got some sleep. X

EYP2021 · 04/01/2025 07:58

Sebring you lots of love and hugs.

DeliciousApples · 04/01/2025 00:30

Hope you're ok OP. Sad times. 😢

doitwithlove · 03/01/2025 22:00

Sending hugs to you. You have done as your mum requested. Take each hour as it comes.

Jingleberryalltheway · 03/01/2025 21:59

Notmanyleftnow · 03/01/2025 21:55

The hospital phoned to call me in as my mum has deteriorated. So I'm staying the night in her room.

I’m thinking of you. x

There is always someone on MN over night if you need to a chat you can just start a new thread and some one will reply.

And Samaritian have an oline chat service if you need it.

https://chat.samaritans.org

Samaritans | Webchat

https://chat.samaritans.org

Notmanyleftnow · 03/01/2025 21:55

The hospital phoned to call me in as my mum has deteriorated. So I'm staying the night in her room.

OP posts:
recyclingisaPITA · 03/01/2025 15:55

Food and water is the body's fuel to keep itself going, keep it's cells renewing themselves as best they can. When the body is dying it's not doing those things any more, it no longer needs the fuel. Don't forget even digesting food takes energy, something a dying person doesn't have much of. It's totally natural for someone in your mum's position to have no interest in eating or drinking.

Even if it would have delayed things they're not going to be putting feeling tubes etc in her because your mum has refused all treatment or tests. She's ready to let nature take its course.

Even with conditions where the ill person could be kept alive for longer, there's not always any benefit to it in terms of quality of life, just a longer lingering death with the extra time meaning extra misery and suffering first.

Same with diagnostic tests, they might tell you what condition you have but if you're dying, knowing what from doesn't change the fact of it. The tests can be unpleasant too.

I can see why your mum made the decisions that she did.

It's hard for you to watch. Death and it's aftermath is not a pleasant thing.

Notmanyleftnow · 03/01/2025 14:39

@Yoonimum sending love to you and your mum.

OP posts:
Notmanyleftnow · 03/01/2025 14:38

Thank you all. No, there are no nearby relatives, and my siblings are abroad and don't want to come.
I managed to phone the ward sister when I had calmed down this morning. She said my mum is still being offered food sometimes and occasionally eats a spoonful. She will chase up the discharge liaison nurse. She was very kind.
I just get in a state at night. I think it's partly the responsibility so I start feeling I could save my mum if I just did the right thing. But I can't.

OP posts:
Angrymum22 · 03/01/2025 11:51

When you visit her make sure you take some food for yourself and a book or magazine to read. Don’t expect much interaction at this stage.
It is very difficult towards the end. You are conflicted by your feelings, you know that death will release her from what is currently happening but we are never ready to let loved ones go.
Is your sister aware of how close she is to dying? Does she want to be there? It does sound like your mum is close to passing away. Can you ask a member of staff if other family need to visit sooner rather than later. The timeline is different for everyone but family are often caught off guard by how quickly the process is.
We were preparing for my sister to return home then she deteriorated rapidly and died within a couple of days. A close friend of mine had been in hospital for weeks and was being moved to a hospice when he died 30mins before they were due to transfer him.

Is there anyone who can advocate for you at the hospital? A relative close by who can help you ask the questions you want answering.