End of life care

[idontknow202]

My mum has been moved to end of life care which is the right thing to do but I don't know how to help her now. She is in nursing home end stage dementia.
She is choking on everything - can't swallow any drinks for last 3 days, can't swallow any of her meds - all stopped 3 days ago too and hasn't been able to eat for several weeks and even the odd mini spoonful of ice cream is causing gaging too a few days ago so nothing is going in. She's in a lot of pain and the morphine is being injected with a syringe into her mouth but she is dribbling it out.
What do I need to ask for her now?
The nurses are brilliant, we are dampening her lips but how long will this take for the natural side to take over? She's experiencing bad cramps and mucus diarrhea, is sleeping practically all day last 2 days has the ketones smell, with very brief spells of lucidity. She's had a lot of love with family there yesterday and today but I don't want to miss the end. Any advice would be really grateful please.

If she cannot swallow they can administer the morphine sub cutaneous. Usually they put a sub cutaneous 'line' in so she would only have 1 needle. She could also have medication for nausea, agitation and respiratory secretions through this. A syringe driver can be set up to give small amounts of all these meds continually. If she is in a nursing home I would think the GP would need to be involved and possible district nurses/hospice nurses.

Has a doctor prescribed the usual end of life medication?

They came out last Tuesday and prescribed them but the home had to call 111 yesterday to get through gp out as they hadn't actually been written up so the nurses can use them yet. The doctor only prescribed oral morphine. The home haven't been using them for her yet though and no one can say why except we need the doctor to come again and the doctor only visits on a Tuesday!
I feel like it's so wicked for her to be left lol Ike this

Bloody hell!

Can you ring 111 now, or the GP in the morning, and get really furious? This is not OK, I'm so sorry. Tbh the nursing home should be doing this for you but clearly they're not taking action.

I couldn't read and run. I have no advice I just wanted to send a hug your way OP. This is terribly sad and I dread when the time comes for when I lose my best friend, my mom.

Sending you strength op 💐❤️

Thank you for your replies, at least it reassures me this isn't how it's supposed to be! 111 wouldn't come out as they said there was no clinical need she has the morphine. Today the GP should be visiting to assess her.
I'm going to ask for an urgent referral to the palliative care team as well today. Salt refused to come yesterday and as the evening went on the brief spells of lucidity were replaced with knowing she was in pain.
I'm camping out there today to speak to the doctor myself and make a more humane plan but we're now on day 4 of nothing going in. She can't even bare her lips being moistened today.
How long can this last ?!

I'm so sorry to read this @idontknow202 End of life care should include a syringe driver so she can get symptom relief that way. I hope you are able to get something sorted out today.

Best wishes to you both 💐

The other thing you or the home can do is ring your local hospice- they will likely have a community team who should visit, especially as her pain is not being controlled.

Absolutely unacceptable that she was left yesterday. A huge complaint needs to go to the GP for that at some point, but that can wait.

The GP needs to prescribe injectable medications today. These need to include pain relief, an anti- anxiety medication and an anti-sickness. They may include others.

They need to prescribe a range of doses for use in a syringe driver, so staff are able to increase the driver as required

They also need to prescribe breakthrough doses, for staff to give when pain/sicness peaks- for example so she can have an extra dose prior to being moved.

There are oral sprays - biotene is good- that can help with an extremely dry mouth. She may have thrush if it's very painful, ask the GP to check her mouth and prescribe what is necessary.

I truly hope that by this afternoon she is settled and you are able to spend some time in peace and calm together.

Would this be beyond the capability of the nursing home nurses? I would have thought they had a lot of experience of end of life ?

As a district nurse reading this breaks my heart but not uncommon. I find GPs don't really get how important those end of life meds are and how to preempt a syringe driver so DNs can visit and put one up without having to chase GPs/OOH. And really surprised a hospice referral hasn't been done.

I really hope the GP assesses ASAP and gets the ball rolling. No one should die this way. If in doubt give your local hospice a call and discuss your concerns with the nurse in charge/manager of the home. They should push this as well.

I'm so so sorry this is happening to your mum :(

Thanks @babysoupdragon2 , I’m going to need this info probably within the next few months

Thank you all for your messages.

We managed to have the district nurse come out yesterday late morning and now a syringe driver has been set up and we can ask for the district nurse to come back and give additional injections for pain relief/ anxiety which have had to happen 2 more times but it takes a long time for them to come. The syringe needs replacing this morning and I'm hoping a higher dose will be put in to ease her pain and anxiety.
I hope she makes her last peaceful journey really soon as I wasn't expecting it to be like this. The care home have been really brilliant but they can't help being short staffed or unable to administer the medication, they're only allowed to do it in tablet form.
Her breathing was very erratic yesterday as the day went on but after another injection last evening she's gone to have a "settled" night.
I think the not knowing how much longer is the worst.
Thank you for all your support.

It’s such a tough time. Make sure the nurse is aware that she is both still in pain and anxious.

My thoughts are with you.

christ, I'm so sorry you are going through this. we have just nursed my mum at home and she died on Saturday. at home it was all very efficient. district nurses were there within the hour 24/7 for injections. that should be the same wherever you are, you would think/hope

it was 3 days for us ❤️

My mum is in a more peaceful place now thankfully and I'm lucky enough to have a life time of wonderful memories. One day at a time now without her xx

Xxx