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.

She is in the best place. They will know what is best for her and they will be able to give her any drugs that will need. They are used to caring for people who are coming towards the end of their lives.

You must try to stop worrying about whether you have done the right thing or not. It pointless. You clearly love you Mum and want what's best for her.

Are you able to speak to the palliative care team, McMillan support or age concern? All these people can offer practical advice and that could include financially.
Are you an only child? Is there anyone else that knows mum that also support you?

I love her so much.
I just worry that maybe she will die when she doesn't need to just because of the wrong drink meaning she'd rather die of thirst.
They did full body CT scans when she was brought into A and E. Would that have shown evidence of the cancer? Because it was never confirmed because she refused further tests, is it possible it was a mistake and she didn't have it?

OP, I'm so sorry you're in this situation, and your mum's change of heart has added pressure which isn't fair on you.

Cancer is truly awful and the end stages can be horrific to witness. That doesn't mean anyone could have done anything differently.

Sadly, yes it can affect the brain - I still don't fully understand the "mechanics" of how it kills someone, but I've seen it happen, and I've watched someone go from driving themselves around to dying eigjt days later.

The occupational therapy team couldn't get new equipment to us quickly enough to keep up with the decline, but yes, there was falls, trips, incontinence, all sorts.

I'm sorry if this bluntness hurts, but I hope you can see your mum hasn't been abnormally affected by anything you have or haven't done.

She is somewhere she can be looked after - please now look after yourself.

I don't know if there is a palliative care team no one has said there is. She's just on a surgical ward cos there are no other beds. There's an estranged sibling in Scotland and my sister in Australia. So I am the one doing it all.
I could try Macmillan helpline e that's a good idea

Oh gosh I never knew that. Thank you

There should be a palliative care team, which hospital is she in. You are tormenting yourself with this, she did have tests before.

I can't leave my dogs. I am unable to work due to autism. I have my own support workers some of the time. I wouldn't really cope in a hotel. After 2 or 3 hours she asks me to leave too.
There just isn't a hospice nearby unfortunately. That's why I have asked if they can move her to the hospital here.

Glangwili Hospital, Carmarthen.

Apart from the support, the responses on this thread are a reality check: she really is dying then it seems.

Thanks this is very reassuring.

They thought she might have had a stroke initially as she could only say yes or no noises at one point, but the CT brain scan showed nothing. And I think because she hadn't wanted to know stuff they didn't investigate further as her speech came back, but in a very weak, slow form.

OP, it sounds like your mum is receiving the appropriate care.

You certainly can deteriorate in all kinds of ways if you have brain mets, which if she has three types of cancer, or rather cancer in three places this may well have happened, it does render you unable to walk and talk, or she may have had a small stroke. Once the body stops working effectively in one way, other ways also start to go wrong, and the overall effect is just catastrophic for the body. You end up with infections, strokes, heart problems and the cancer itself all causing multiple problems. You can't just remove say the speech one and make everything better.

If she is already on an end of life pathway, these days they let the patients usually dictate if they want drinks or food, as many people lose their appetite at this stage, and also swallowing is problematic (hence the use of the thickener).

The body is adapted to die though, just as it is adapted to be born. I find Hospice Nurse Julie on Facebook and Instagram's videos very helpful to explain the processes that go on during dying, there is a pre-dying phase and then an active dying phase and it helps to know what types of things might happen.

Treating your mum actively with antibiotics might help her live temporarily longer but it might be more drawn out, so that's something to bear in mind.

Moistening the lips is also used to stop people feeling uncomfortable if they are not drinking.

It may be your mum is not there yet, and she may still want a little food or drink, but ultimately nothing is going to make a huge difference and giving this may cause her to choke towards the end.

I'm sorry, OP, this is such a hard thing, talk with the nurses and people around her, phone Macmillan or another healthline as well. It is a hard time, your mum will also find it hard, I find it helpful to say 'I don't know, let's ask the doctors/nurses/chaplain' in these situations when asked questions I don't know the answer to.

Wishing you all the best at this time.

Their website says they have a palliative care team Monday to Friday 8.30am 01267 227101.

I would suggest asking for a palliative care team review and ensuring they know she doesn’t want to be in hospital. They may be able to move her to a hospice or even home with a full care package (although this may be difficult and not easy for you).
like previous posters have said, iv fluids aren’t appropriate now. They end up doing more harm than good and your mums comfort should be the focus. Mouthcare can ease dryness and let her eat and drink what she can tolerate / wants of it is safe to do so.
I’m really sorry this is happening. If you mention to the hospital your difficulties getting there they sometimes have accommodation for families of patients who are end of life. be kind to yourself. It seems your mum knew what she wanted and you are honouring this. Sending a hand hold

Thank you very much. So will they be caring for her ? I thought they were only for hospice stuff in the community.

I lost my DF a month ago to cancer. He was on the Welsh borders and we had amazing support from the GP, district nurses and overnight nurses based out of St David’s hospice which meant we were supported to care for him at home, and meant he could die in hospital house (his oft vocalized wish)

start with the GP on Monday morning, I was amazed by what was available. He had a syringe driver and was in no pain, he was non responsive for about 36hrs before he died, and the DNs told us exactly what to expect so when the time came, me, DM and DSis were all with him. He slipped away, having known nothing about it. Your GP should also be able to give you the number of out of hours palliative care which negates the queues for 111 Wales, which can be long!

im sending you much strength as it’s a really difficult time, and I hope you get the support you need xxx

They will probably have a team at the hospital with doctors, nurses and therapists, thy are often asked for advice on end of life care, medication, can answer questions you or mum may have. They work alongside the ward doctors and nurses who will be looking after her. Mum will have been seen by the doctors and had tests at the hospital, you said she had scans, staff on a surgical ward will look after her.

Thank you all I will try to phone the palliative care team at the hospital on Monday. Maybe my support worker can do it for me.nits so hard advocating for someone when you need help yourself.

Samaritans may be worth a call 116123 for support

Please ask the nurses to speak with the doctors and SLT to make an eating and drinking at risk decision

If she doesn't like the thickener she has this right to decide with or without her treating team. The risk of aspiration/pneumonia may be there but sadly she is approaching end of life regardless and a cup of tea without thickener is one of her choices x

Thank you they have spoken to a SALT who assessed her swallow but she is now allowed to eat anything she wants. But they haven't changed the drinking. I don't think they can do stuff at the weekends but I will ask palliative care team monday

Those drinks sound good except she literally will only drink black coffee or wine. No water. No milk or anything sweet. I think she may be autistic too as she is rigid.

I meant for you. You're not eating.

They don't have a crystal ball. She refused tests, nobody knew exactly what was wrong. But with one definite cancer and several more suspected, it wouldn't be surprising if she was riddled with it throughout. Some types are very fast growing too.

You are not to blame in any way whatsoever. Your Mum had stated her wishes but seems now to have had a change of mind, there's nothing you can do about that. Leave it up to the medical people to deal with. You just don't have control over this illness. Not even the doctors do.