End of life pathway please help

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?

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.

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

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.

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

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

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.

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.

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.

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

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.

@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.

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

I found some staff were more direct than others. Older more experienced doctors tend to be kind but very direct. I also found if you ask specific questions they’re clearer. They’re also trying to work out how much the person asking wants to know.

Maybe explain to the staff that you are autistic. As a clinician, if I know a patient or advocate is autistic I know that they don’t always understand some of the ways that we explain things and that we have to be much more literal.

recycling is correct about the apparent improvement not long before people go downhill. It can be hours, days or weeks before death. My DSis seemed to make a miraculous recovery a week before she died. We called it the “trifle effect” because after being quite poorly and not eating she sat up, demolished the trifle she had been given for lunch and for a few days seemed much better. So much so that they organised for her to go home so she could die at home. It didn’t last long and the day before she was due to be moved she deteriorated rapidly.

The other thing you need to know about is “terminal agitation”. This refers to the restlessness they experience. In my sisters case she would constantly mess around with her bedding and we would spend hours changing her bedding, her position, her clothing and the position of everything until she was comfortable. She would then settle for a short while before it all started again. It is frustrating for everyone around but just go with it. Don’t be upset if nothing you do is right.

Don’t be afraid to ask for pain relief or something to calm her down. The two drugs used are usually opioid based ( morphine or similar) and sedatives. The drugs don’t speed up the process and are not a form of euthanasia. It is the cancer that will cause her to die and not the drugs. The drugs will just make it more comfortable and less distressing.

Towards the end your mum will go into a deep sleep or be unconscious most of the time. She will react to pain and you can see this in her facial expression. She may appear to be in pain or struggling but if her face is relaxed then it is just her body shutting down.

It is hard to watch and be part of, but being with her and supporting her is your last act of love. Afterwards you will be glad you were there to help her through it.

She will be able to hear you and feel your touch so even if she appears unconscious talk to her, read to her and hold her hand or stroke her arm or maybe her hair.

While she is still conscious tell her the things you want her to know. Help her to tidy up her hair or help her eat. Watch the TV together, tell her the gossip. It is ok to laugh and it is ok to cry.

The last two weeks we spent with my sister helped us tremendously. Your mum may want to talk about her funeral. Have a note book ready to write down her wishes. If she doesn’t want to discuss it, ask her if she has left instructions.

Most of all, don’t be afraid of asking the staff questions. They have been through the process countless times and can explain what is going on. Death should be as normal as birth but it has become very clinical. It doesn’t have to be. I can think of nothing better than being surrounded by your loved ones as you die. Everyone deserves a good death.

It’s normal in the UK to not know about death unless you work in that field or have watched a love on die.

People on are only put on the end of life pathway when they’re actively dying. You can ask your mother’s nurse how long she expects her to have left, they’re not always right but often they know. Tell them you have autism first and that they need to clear with you.

There's something else to warn you about OP. IDK if it would happen with your mum or if it depends on the person's illness, maybe some people it doesn't happen to. Perhaps if there's any nurses here they can explain better than me. But there's a thing which can happen where the person seems better, not completely back to normal but a lot lot better, quite soon before they die. So if that happens don't think the doctors are wrong and she'll be fine, she won't. Just telling you so it doesn't shock you if it happens.