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.

You are not to blame. You have ensured that her wishes have been adhered to and as those wishes have changed that they were communicated to her medical staff. There is nothing to feel guilty about.

I know that when my dad's cancer went into his brain he spoke very little sense and we just had to react to his wishes in that moment.

It is a difficult time for you so be kind to yourself and ignore the intrusive what if thoughts.

Sorry to hear about your mum, she made the advance directive and they won't just take your word for it, the doctors will speak to her and can explain what they think has happened but is it the cancer that caused her collapse and loss of speech. There are other drinks and safe soft foods she can have apart from coffee., it's not your fault.

Thank you, can cancer do that then? Take away someone's ability to walk? And lose speech?

You have done everything possible to do as your mum wanted. Please be gentle with yourself. In my husband’s final days, he didn’t have IV fluids, he couldn’t swallow. The nurses showed us how to do simple mouth care to ease dryness. The nursing staff did this if I wasn’t there
look after yourself. Try not to ruminate

You've done your best to follow her wishes to the letter. Nobody could have done more.

Now you need to look after your own health. That will help you stay strong enough in the coming days and weeks.

If you can't eat you need to get to the GP or chemist for some medication to sort your bowels out. I just need to eat a lot of fruit or smoothies and that sorts me out but some people need medicine.

Please look after yourself at this difficult time.

If she isn’t going to recover the ability to swallow, which as she is terminally ill is unlikely (but check with her medical team) then the fluids will just drag out her death and make her uncomfortable because her body won’t be able to deal with the fluids.

Have you asked if she has had a stroke or if it’s part of the normal process if dying?

Yes it can if it has metastasised in her brain.
My Stepfather was on end of life pathway in October following meningitis. All treatment was withdrawn including fluids. He was taken back into his care home once this decision was made and he died 5 days later. We sat with him much of the time, but he was practically unconscious. He didnt seem to be in any pain or distress. One of my concerns was not eating or drinking, but I could see that as his body was shutting down, he just slipped away quietly.

Anything affecting a person's brain can take away anything and everything, depending on which part(s) of the brain are affected. Neurology is brain stuff, so if she saw a neurologist she's got brain symptoms - of what, we don't know, because she refused the tests. But if she has cancer elsewhere, then I'd guess it's that in her brain.

If she doesn't have long, are you in a position to get a credit card, take compassionate leave from work and go stay in a hotel nearby so you can visit daily? If she's not eating or drinking she surely can't have much time left. Don't get yourself into debt you can't pay off though.

If you want to do something practical, you could try contacting hospice closer to you to see if there's space and what the process would be to get her there. Maybe it's not something you can organise, IDK it could be NHS organises it, but might make you feel better than doing nothing. Also a hospice isn't hospital, so you'd be respecting her wishes.

Yes, definitely if it’s gone to the brain or spine. You don’t know what type of cancer it is?

Thank you all.
I do have fybogel but I haven't been taking it. I think on some level I think I don't deserve to eat if she can't. I promised to keep her out of hospital but i didnt. I only lasted two nights as her sole carer I phoned social services but no one would help cos she wouldn't go into hospital or a care home and she fell 20 times and I kept lifting her but I just couldn't keep her safe and I ended up telling social services I was walking out and leaving her because I would harm myself. I knew her friend would visit her and she stayed or I would have got police to do a welfare check. But I basically abandoned my own mother

I am eating some just struggling. Soup is good. My support worker took me to buy some. I struggle with cooking due to autism and now all my energy is on surviving this hell I seem to be in.
I'm sorry for all those of you that go through this.

The neurologist said in August she either had paraneoplastic syndrome or vague chance of Huntingtons chorea. But she decided he didnt know anything and refused tests.
The original scans said she had indications of cancer in the lung, liver and pelvis but they needed further scans to confirm. She refused that too.

Re hospice the consultant said ideally she would receive help to die at home as there isn't one near. Rural Wales. But he said it was extremely unlikely that palliative care at home would be available.

Well done you looking after her so well.
Make sure you look after yourself as well though.
Dying is a horrible business sadly, it just is what it is though.

I asked the doctors to phone me on Thursday but they still haven't.
There was a social worker who phoned me last Monday but she was to do with social care not the hospital so I don't know if she can do anything

Thank you.
I thought people just shut their eyes and died. I didn't know it was like this.

It was unrealistic of your mum to expect you to be her end of life carer. It's not practical. She needed trained carers and specialist equipment to move her. She refused that, so she ended up in hospital due to her own decisions. You've nothing to feel guilty for.

People think dying at home means going to sleep basically healthy and mostly symptom-free and not waking up. That's not reality. Most people need nursing for a bit before they die. It was unfair of her to put that on you.

Get Fortisip or Ensure from the pharmacy if you can't eat or order online from Holland and Barrett or similar places, it's milkshake food drinks.

I think she didn't want me as her carer she wanted me to go home but there was no one else so I couldn't leave until I had to.

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.

Also she thought it was just a bladder infection and that she would get better. Because she was her usual self Thursday and suddenly lost consciousness and started falling. And the doctor said it could be a UTI. So she was waiting for the antibiotics to work. She didn't think it was related to cancer.

So she didn't think I was caring for her dying. Because we didn't know she was dying. A GP came out and said she wasn't dying.

Sadly not my love but you are absolutely on the right board for support. Lots of caring people here who can help, if only to chat to.
its so hard when this happens to your parent xx

A week ago I was told she was nowhere near death. So I don't understand

Thank you.
It is agony to see.

@Notmanyleftnow I feel so sad for you, kindly meant, you’re over thinking everything. This is a situation which you have no possible control over, self blame is part of trying to be in control.

It is a fruitless activity.

We are all going to have to face the death of our parents, and our own death at some point.

There is no telling what the future holds.

My mum is in bed all day for no reason with what i think is depression, but she will not go to the doctors.

My Mil has been in a care home for three weeks and is going downhill fast.

All i can do is let things unfold and be as supportive as i can.

You are an observer in your mums demise not a participant, seek some support from age concern or some other helpline, if you have no siblings to share with.

This is going to be hard for you. Take care of yourself, you still have a life to lead.

Half the problem is that we expect doctors to always have the answer but a lot of the time they are just doing their best with what information they already know. These illnesses can suddenly precipitate much faster than anticipated or equally drag out fir years longer than the consultant confidently predicts. They really only know the iceberg's tip of disease and how our bodies work. Treat everything they say with caution, a guesstimate based on previous experience but not exact to your mum

the one certainty in life is death but the journey there is far from certain.

do you have siblings/partner/close friends to support you ? It's a tough journey alone