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.

@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?

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.

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.

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.

@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.

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.

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

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

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 💐

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

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.

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

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.

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.

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.

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

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.

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.

@Yoonimum sending love to you and your mum.

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.

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