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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:
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

doitwithlove · 03/01/2025 22:00

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

DeliciousApples · 04/01/2025 00:30

Hope you're ok OP. Sad times. 😢

EYP2021 · 04/01/2025 07:58

Sebring you lots of love and hugs.

Yoonimum · 04/01/2025 10:58

Hope you got some sleep. X

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:
recyclingisaPITA · 04/01/2025 14:21

Thinking of you 💐

Bluemat · 04/01/2025 14:26

Thinking of you OP 🌹

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.

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.

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.

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.

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.

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:
Notmanyleftnow · 04/01/2025 20:34

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

OP posts:
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 💐

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.

Bluemat · 04/01/2025 20:56

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

BeAzureAnt · 04/01/2025 21:14

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

MelainesLaugh · 04/01/2025 21:17

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

Marylou62 · 04/01/2025 21:20

Oh OP.. I'm so very very sorry..
My own dear Mum died on December 14th with me holding her hand...
I sat with her for days but it was a privilege to be with her..
And like you said. She was with me when I came into the world and I was with her when she left it..
I'm busy arranging her funeral which is next week...
Be gentle with yourself..
Sending love to you...x

Mischance · 04/01/2025 21:22

I have been in this situation with my DH. You need to take a deep breath and try and stand back a bit and take an objective look at things. I know it is hard, but torturing yourself with guilt is not a good route.

My DH had a neurodegenerative illness and following a fall and surgery went downhill very fast. He was physically incapacitated and mentally in distress. The medics were clear that they had no further treatment to relieve his distress, in spite of their very best efforts.

One day he developed a temperature - presumably some infection - and they were all set to blue light him to hospital when I intervened. I asked them what they were dragging him back to life for? - what was his quality of life? I had PofA and instructed them not to take him into hospital for drips and tests and heaven knows what, but to make him comfortable and let nature do what it would.

The first thing I would say is that he was made very comfortable - they kept his mouth moist and his body clean and sore-free and administered a sedative at any sign of distress. And he had no fluids. He died very peacefully.

So I have had to live with actively making a choice for him to die on his behalf. Yes - it was hard, but I was very clear about his best interests. Yes, there was guilt, of course there was, but the alternative was unthinkable.

What I would say to you is that you must ask yourself what you would be saying to a friend who found herself in your situation. And what would you be thinking. Would you be thinking that your friend was doing their absolute best in a very bad situation? Would you be telling your friend she had absolutely nothing to feel guilty about?

You are doing your best in a deteriorating situation. When your mum was clear in her mind she was expressing a wish for her life to come to an end, and even had a plan to achieve that. Her wishes were clear. Now that she has become worse, there is no reason for you to think that this has changed. She is hearing the end of her life and whatever you do or do not do will not change that.

It is important that you allow yourself to know that no-one has a simple answer to all this and you are doing your best. Watching someone come to the end of their life is a challenging and profound experience that demands a lot of us and has no clear rule book. Every person is different. It is an experience that many of us have never been through and we are having to learn at a great speed.

It is clear from your posts that your expectations of what her dying process might be like are uncertain in your mind. I think you should write a list of questions and ask to speak to the doctors so that you can have as much clarity as possible, even though they cannot predict with total accuracy.

But please remember that there is no right or wrong thing for you to do here - you are feeling your way through a bit of a minefield that anyone would find hard.

I will be thinking of you and wishing you strength. Above all else do not feel guilty - you have noting to reproach yourself for. Take care.

Whatevershallidowithmylife · 04/01/2025 22:11

Oh OP I’m so sorry for your loss, you’ve been a fabulous daughter at the very time she needed you most 💐

Yoonimum · 04/01/2025 22:50

You have done wonderfully. I hope it gives you peace to know you were there for her and followed her wishes. You asked after my mum, who is at home.
No change apart from the fact she is developing pressure sores as she has almost no voluntary moment due to her general weakness. The district nurses are coming tomorrow to advise on this. It is difficult because I want to be with her but when she is disturbed she wakes up and asks for water. Her swallow has broken down so it actually makes her feel worse but she keeps asking. I'm just willing her to sleep through into a coma and slip away now as there is no ease let, alone joy, in her waking moments. It's very sad but I'm happy I can be with her on this journey and I know my brother and I have done everything we can. I must also give thanks many times over that she can afford a full time carer and she is the most wonderful woman. Both my mum and the rest of the family are very fortunate in that respect and I take my hat off to anybody who has cared for a dying relative at home without this support.

EYP2021 · 05/01/2025 03:22

I’m so sorry sending you so much love. ❤️