Terminal agitation what else can they do?

[Totallybannanas]

Df end of life, he has been restless since Saturday. Covers on and off, trying to take of his pad and PJ's. Reaching out and hullcinating, he knows we are there and will say things like 'Hello' but then he will ramble on about something. He seems stuck on repeat at times and in-between, past, present and dreams. I haven't seen him in a deep sleep for 3 days 😔 it's been very, very distressing to watch. They have put a syringe driver in after me pushing, but they don't seem to have the dosage right. He was on a very high dose before on injections and oral medication. He is in so much discomfort from being in bed, his bottom and back aches. It's so heartbreaking. He currently is on an air mattress. A lump the size of a golf ball has also popped up on the side of his neck, so now he keeps touching it. I just want him to go into a deep sleep now and be at peace, but I mentioned about the agitation and pain they said he's had slit already and they didn't want to over sedate him. Does it matter at this point?

No it shouldn't matter. Im sorry you are going through this. When I called the nurses out for pain relief etc, after ahout the third time they advised syringe driver and said the dose would put him to sleep, which it did. I was upset as dad said he didnt feel pain but he was showing symptoms of pain. He didnt wake up again really but knew I was there when I dod mouth care etc. He shouldn't have to suffer and I think I woild now advocate strongly for higher dosage now

If symptoms are not being well controlled, the staff need to urgently get a review from a palliative care team. Is he in a care home?
So sorry he’s experiencing this.

I’m sorry , this is so hard.
when my gran died this year, she was at home and we had to call the nurse in a few times over the week of her life. She was so sore from being in bed and I could tell she was in pain, though she couldn’t verbalise this. We argued for her medication to be increased a few times, and when this was at the right level she slept for her last days.

don’t be scared to keep ringing the district nurse, they expect to come out many times as it’s a tricky thing getting pain relief and medication balanced correctly and things can change hour by hour.

it sounds like you are a wonderful advocate for your DF.

sending love x

Also, something that helped was giving her something to hold and ‘worry’ in her hand. She held a tissue, which changed to a soft washcloth when she began shredding the tissue. This stopped her trying to pull at blankets and clothes.

We also placed her handbag on the bed, as we figured she was worrying about there it might be.and we gave outs of reassurance, such as telling her the dishes had been washed, the laundry was folded, the kids were in bed (none of this was current , but this was where she was mentally and it was causing her to be agitated).

maybe think about the things your DF might want to resolve, like walking the dog? And verbally reassure even if he isn’t able to state these worries. I was surprised at how much this helped with my gran.

this behaviour can all be a really normal part of people getting ready to ‘leave’.

A couple of days before my mum died, she was clearly in pain but not very good at verbalising. We called the district nursing team and very inexperienced nurse came out. She asked my mum if she wanted “ an injection” and mum said no because it would hurt. The nurse then said she could not do anything without consent and left. As mum was end of life the hospice team did home visits after usual hours so we waited and called them.
The nurse was clearly uncomfortable with the earlier decision ( eye brows raised sky high) but was very professional.
She asked mum if she would like some medicine to make her more comfortable ( explaining that the quickest relief would come from an injection) and mum was so relieved.
I think it is a difficult for both patient and family but pain relief in the last days is a skill which should be prioritised for health care staff.

He will need his syringe driver reviewed and the medications increased but in the meantime they should be able to give him PRN doses on top, midazolam and morphine is normally what is used. I feel some nurses are scared to give too much incase they "over sedate", but like you say right now comfort and peace is the priority. I'm sorry you are experiencing this, it's horrible to watch x

Thank you the hospice nurse came out again and upped his medication. He is in mostly in a deep sleep now. His breathing has changed and is rapid and then slow. I guess we very near the end now 😔

Thinking of you @Totallybannanas. I wish for a peaceful end for your DF. It’s lovely you can be with him x

I'm glad somebody who knew what they were doing has finally got the medication dosages right.

Mum had Haloperidol and Medazalan for terminal agitation via a small sub cut cannula and was mostly settled once they got the dose right. I think ask for the palliative care nurse to reassess

Thinking about you OP It's a very tough time for all of you x

Thinking of you OP. My mum died in May this year, in a hospice. I recognise what you are experiencing, and would definitely encourage you to continue to ask for meds to be increased as much as needed to keep your dad calm and relaxed. At this point I'd argue that it's impossible to over medicate.

I have so much respect for you keeping him in his own home, mum would have preferred that, but there's no way we could have coped with it.

Be kind to yourself over the coming days xxx

I am sorry you’re having to go through this. I hope he sleeps away and remember you’ve done very well by him. X

I currently on a camp bed next to his. His breathing is very rattly, which is very distressing

Next time a hospice nurse is there, you could ask about medication to help dry up some of the secretions that cause the rattling breath, but really breath changes are part of the process. Sorry you are having to go through this, but it probably won't be very much longer.

So sorry OP, I hope your dad stays peaceful now. Breathing changes are normal at this stage, although it sounds distressing for you 😔 sending you strength to get through this time and thinking of you 💐

Sorry you are going through this. It’s terrifying when you don’t know what’s going on or what to do. Hospice Nurse Julie on YouTube has some really valuable insights into what to expect from end of life if you don’t know who to ask. I went through this with both parents and am now studying to be a palliative care nurse myself.

It feels like it's getting worse hour by hour, the rattle came on this evening and is getting worse and his skin is also starting to mottle on his legs. I've asked the nurse and she isn't giving me any indication of how long he has. I don't know when to call people 😔

It will be days or even hours, not weeks, almost certainly, OP. When my mum was unwell I didn't call people but emailed or texted to put them in the picture so her death wouldn't be such a shock. When she did pass away I phoned them.

She's gave a shot of morphine and midazolam as his respirations were rapid. I've noticed his toes are cold but feet and hands warm. His breathing seems to be slowing now after the shot and less rattly. I want to be here but also want to run away 😔

You don't have to be in the room all the time, OP. Make sure you rest yourself. A lot of people seem to wait until their close relatives or friends have gone out of the room before they die, so please don't feel bad if it happens that way. When I couldn't think of what to say, I read to my mum. 💐

Thank you I've been playing songs, I struggling to find the words if I'm honest as I've been mainly with him and I'm getting too upset.

Sending a hand hold. Well done for being brave. Keep going even though it's hard.

Playing music they would like is great too. I made a playlist for my mum.

Just saying I’m another one here thinking of you and your dad OP, wishing for peace for you ❤️