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.

Thank you I truly don't know if I can cope with this for much longer

I just spoke to a wonderful Macmillan nurse on their helpline.

I'm so sad for you, especially at Christmas time.

@Notmanyleftnow this is such a hard time and it does feel unbearable. I'm glad you spoke with someone on the helpline, as it's so hard to know what's going on, I felt bewildered the first time I was with someone on an end of life pathway, just no idea what to expect, what happens, or what was normal. I hope you can get some rest.

You will cope, you will find the strength. I’m glad you have spoken to someone. The more you understand about what is going to happen the better prepared you will be. I have to admit that I found it difficult with my mum but that was nearly 30 years ago and end of life was still a poorly supported area of medicine. It is so much better now.
We are still not very good with the process, maybe because it has become a less frequent event and we are expected to be sad and shy away from talking about it.
I think once you accept that nothing you have done or could have done would have changed things then you can spend time with your mum just being there.
My sister could be a bit of a spiky person but during her last weeks she accepted our care and love. We had lots of hugs and chats. She died very peacefully without fear. I wasn’t sure about being there but I’m glad I was.

I think most of us feel like this because nobody tells you until you're going through it. We don't like talking about death in this country, it's such a taboo which then becomes self fulfilling.

i hope you are feeling a bit better/less overwhelmed with it all today x

My GP has prescribed me diazepam.
I got a lift to the hospital this evening and stayed an hour but my mum just wanted to be left alone to sleep.
A healthcare assistant talked to me and said yes, she definitely is dying. But no one knows when.
I am going to try to get my support worker to take me there tomorrow because it's the last chance for me to try to talk to a doctor before Christmas.

What reason would the support worker refuse to take you to see your mum OP?

I am glad the GP has given you medication to help you cope. I hope you get to see your mum and that it goes well with meeting the doctor tomorrow too.

Just if there aren't enough hours, because she has someone else booked after me. Because it's a one and a half hour drive each way to the hospital. But rhe manager was going to try to move things around.

Thank you. A hospital doctor did ring me today and say they are happy to tell her if I'm there, but that my mum is moving in and out of consciousness so may forget in half an hour. I'm not sure what that means. Because if he means she keeps falling asleep, you can still remember things you were told while you were awake? Unless consciousness means something other than being awake.

OP I'm so sorry to read about your mum, just to answer your last question asleep and unconscious are 2 different states. You can be asleep but roused from sleep will be awake and conscious. When your mum is unconscious she will not be able to be wakened and will have no awareness on what is happening around her. At end of life it is not uncommon to drift in and out of consciousness.

If she looks to be in pain or distress the ward staff may start medications to help keep her comfortable, but they also may make her more drowsy, but the aim now is to keep her comfortable.

She's not aware of her surroundings, maybe. Perhaps not opening her eyes even when she's awake. Conscious is the opposite of unconscious. Unconscious is more than just asleep. So she might be conscious but that doesn't mean she can talk or see or have ordinary thoughts. She might be able to hear though. Don't forget she's got something affecting her brain, whether it's the cancer or something else it could get worse before she dies. You can still go hold her hand though, she might be able to feel it.

It probably means she's not really with it
Like when you wake up from anaesthetic or you're really tired and say morning and fall back asleep again.
Sometimes I wake up and think "did he leave and I said morning or did I dream it?!"

Consciousness is more than awake/asleep

Unconscious is can't be woken, so like when you faint so she is awake but not with it, then going back to unconscious

Sorry if that's not very clear

You can sit with her and talk and hold her hand
Or play some music she likes or even a podcast with a story on if you don't feel like talking

There's sleep stories on YouTube that are really calming OP, either for you when you're feeling stressed or to play to your mum. If you don't know what to say to her I'd tell her your favourite memories. If I was dying I think that would be nice to listen to, even if I couldn't remember who the visitor was.

Hi OP this is a short YouTube video we were given to watch it is not frightening or graphic but rather calming

the doctor who made it has done a lot of videos on the subject and you may find them helpful. With autism you often find it difficult with inferred information and will probably understand a more direct description. If you need to chat keep on posting questions. We will try and answer them using more direct language if that’s what you prefer.

Thank you.
@Angrymum22 that video is very helpful and comforting and I will keep watching it.
Today I did one of the hardest things I have ever done: sat there listening to the doctor tell my mum she isn't going to get better, and her ask him how long she has left.
The pain feels like it will kill me.

OP, it is hard. But you did it. Perhaps your Mum did it for her Mum or Dad too.
Parents are meant to go before their children, it's the natural way of things. It's at times like these when you find out how strong you can be, even though you feel so sad it hurts, physically.

Today she finally got her cup of black coffee without thickener. A Christmas miracle.

OP@Notmanyleftnow I’ve been thinking of you, great to hear she got what she wants to drink! Can I ask, are your siblings coming to see her, have you told both of them?

@Sproutssprouts thank you for thinking of us.
My brother and sister know, but one lives in Australia and came over in October to see her. The other lives in Scotland but they have been estranged for some time, although Christmas gifts were sent this year. So, no, I don't think they will be coming.
The nurse today said they have written down that she is to be fast tracked to my local hospital which is only a 15 minute bus ride from my house. So I have told my sister to chase it up Friday, as it's time someone else did the fighting for a change.

That’s good to hear that she may be closer to you, I do think your siblings need to help as much as possible. I know it must be very hard on you as it’s all so unpredictable at the moment but just take one day at a time.

I'm currently wondering if it's all a mistake, and shes going to get better.
Because she ate some camembert and crackers today. And the doctor yesterday said they didn't know why she was dying, because she has nt had tests. So, he said, it could be cancer or a neurological issue or old age.
Which, to my mind, means they don't even know she's dying so she may not be.

@Notmanyleftnow thinking of you today.

It's awful going through the process of losing a parent, even more so at Christmas.

I really hope the hospital are able to transfer your mum closer to you.

Unfortunately, with Christmas and then the weekend and the new year, you may find this doesn’t happen for a while.

I wish you peace.

Sometimes you find that loved ones have a surge of energy and seem like they're recovering then they take a dip again, unfortunately it isn't a linear process which makes it so hard to cope with as you can't help but get your hopes up when they seem to improve
Please don't beat yourself up over any of this. It's not your fault at all. I hope she gets her transfer soon.

We nursed our mum through end of life, palliative care in the community. As others have said, organs gradually shut down, she stopped eating and drinking and eventually faded away. She did rally several times in the last few days though and the district nurse said she’d really given us the run around! I’d never experienced death before and couldn’t really believe it was happening so wanted certainty in terms of timing, what to expect and a linear path (also likely autistic) but we were told death is different for each person. The only time we knew it was imminent was when she developed the ‘death rattle’ about 10 hours before she died. My thoughts are truly with you if this is what is happening but please please have compassion for yourself - you are doing a great job and the best by your mum.