End of life advice desperately needed

[Nodancingshoes]

My grandmother is receiving end of life care in a nursing home following 3 weeks in hospital. She is 99 and my sister and I are NOK. Up until 18 months ago, she was fully independent. She has been in the home for 8 days now, no food in all this time and almost no water - she is just on mouth care now. She is almost completely unresponsive now although does seem to know briefly when we are there. If she does wake, she is very distressed. She has had a syringe driver for about 2 weeks. I know that it is impossible to predict but, in your own experiences, how long will it be until she passes? She is suffering and we are all in bits watching it happen. I keep my phone by my bed every night waiting for the call - I have even prayed for God to come and get her even though I am not in the least bit religious 😥I know no one has the answer but if you can share your own experiences I think it might help

Is she on any medicine?
Ask for morphine and sedative.

It shouldn't be long, but time is difficult to predict.
Condolences on your loss

I worked in a nursing home and we had one patient last for 23 days with no fluids... the body shuts down very slowly for some. When my Dad had cancer, I think it was just under 2 weeks.

I'd question what they're giving in the syringe driver to be honest. They weren't giving my Dad enough Midazolam and once they got that right, he was so much more settled.

I think she is in the last part. My father was in that situation and it was two weeks. Bless her and bless you.

I'm so sorry you're going through this. I have been with a close relative recently for end of life care and was surprised at how they could carry on; it was distressing to watch at times. They lasted on mouth care for about 2 weeks.

If she is waking and distressed I would push for meds to be increased , for my dad it was about a week from start to peaceful end

Really sorry you are going through this.

I found ^https://www.kathrynmannix.com/^ really helpful. She is an "end of life doula" and her podcasts contain a lot of wisdom.

If your mum is in pain or distress keep on demanding medical interventions to relieve that. However, some of the common symptoms that we see as a mind starts letting go of control of the body can be perceived as distress by observers when the person experiencing it is not in any distress at all.

Have you asked the nursing staff looking after her? In my experience they are a very good judge of likely timings. And very empathetic to your emotions too. So if you haven’t already, I would ask them.

I asked for my dad to be sedated and pushed for it to happen as fast as possible as he had asked me for that and was very distressed. Once he was sedated he passed the same day.

We have asked whether her meds could be increased to stop her distress - they said they could use an injection to calm her when needed which they did yesterday. She doesn't appear to be in any pain thank goodness due to the morphine driver. I've just been in and sat with her for a while and I was scared to wake her in case she is frightened - its so heartbreaking to see. I held her hand and gave her a kiss before i left and I think she knew I was there. She looks so tiny - she is literally wasting away in front of us. Her breathing is steady but very noisy - she makes a moaning sound every time she breathes out which sounds like distress but I'm not sure if it is or not. I guess I just wanted a peaceful death for her and it doesn't seem like she is getting that 😥

My mother was 5 days on a syringe driver and nothing else but mouth care. She'd had lung cancer for some years and been bedridden for 9 months.

My brother and I did a round the clock vigil to ensure one of us was always with her as my Dad already had dementia and was not much help - we feared she'd die and he wouldn't even realise. They told us when the syringe driver was 'fitted' that they could increase the dose if we felt she was distressed and they did so when we called (she was at home until her final day, when she was moved to a hospice.

Interestingly, she recovered consciousness in the hospice and asked for a drink (unsurprisingly), so they brought sorbet and a cup of tea, of which she had a bit of both. She died a few hours later.

@MrsWobble3 I asked today and she was very kind but said it was impossible to tell. She did imply that as she was no longer drinking it wouldn't be too long now.
I watched my mother die when I was a teenager and although circumstances were different, I remember the feeling of watching and listening to every breath hoping it is the last one and feeling guilty about that hope! Honestly, this is worse - it seems more traumatic. My mum was quite peaceful at the end whilst Nan seems to be hanging on.

Just wanted to say try not to worry about the noisy breathing. It's what is sometimes called the 'death rattle' as the body shuts down, and is quite normal, but nobody thought to tell me this and I found it really distressing as I thought my dad was struggling to breathe and everyone was just ignoring him.

I'm still processing my Dad's death, OP. Those last 3 months of his life were horrendous, and his death was anything but kind and that was with an expert palliative care team kicking the nursing home staff up the backside on more than one occasion.

Don't be afraid to ask to speak to the GP that covers the home - or ask for more sedation. It's hard to word without offending but I think nurses in care homes can become a little hardened to death and as a relative sitting next to a loved one writhing in distress, you're the one that needs to be their advocate. It's not nice.

Just sending ((hugs)) OP

My dad was only 3 days in end of life

Is the mouth care sponges on a stick dipped in water? Is she getting this often enough? Could she have subcutaneous ( not into a vein, just under the skin hydration?

Sorry to hear about what you are going through with your gran. It does sound like the natural course and no one knows how long someone takes to pass - could be hours, could be a couple of weeks. So long as they are comfortable and their needs are being met in the way of physical care and end of life nursing. If there is anything you would like to know, speak to the care home nurse or manager or GP. Do insist if there is anything you feel is amiss i.e. bed not right height etc that it be changed for safety and comfort.

When my dad was like this we told him it was time for him to go now and that we would be OK. I don't know if it really made any difference but he slipped away quietly within 48 hours.

After my dad started that breathing, it was about 36 hours.

It's near now op. Thinking of you.

I'm here now. The drugs in her driver are oxycodone and levopromazine. My sister is due to arrive in a minute and she is going to ask about midozalum. She has been crying out in her sleep which makes my heart lurch every time she does it

Please do watch some of Kathryn Mannix's videos as linked above, she's got one called Dying for beginners which takes you through what to expect at each stage https://www.hospiceuk.org/latest-from-hospice-uk/what-happens-when-someone-dying
we found this information very comforting last year when my FIL was at end-of-life.
i hope it is not too long now for you and your grandma.

She may be desperately dehydrated. I was once with someone dying who seemed to want the watery sponge sticks very badly every time I offered one. I told the doctor who offered subcutaneous fluid.

No one was coming in to offer the sponge dipped in water stick frequently.

This may sound strange, have you told your grandmother you lover her and it’s okay for her to leave? The noisy breathing is completely normal, and can be a sign the end is near. Look after yourself.

Love not lover.