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?

Thinking of you. Im in Australia so day time for me. Went through a similar experience with my Dad in January. You are doing all the right things. If he becomes unsettled or agitated please dont hesitate to push for more drugs. I had to push really hard for my Dad's last 24 hours and am just thankful that I was there to do this. In the end we got there and he died with Mozart playing and didnt seem distressed. The rattle sounds awful to us but it's not meant to be distressing for them.

I’m so sorry. It sounds like it won’t be long now. You are doing a great thing, his baby girl is looking after him.

I’m still thinking if you @Totallybannanas. Your updates about his breathing and skin tone all sound very normal. It’s part of the process, but it can be so distressing to see. He won’t be bothered by the rattling breathing, but there are medications they can put in the cannula to manage this.
My gran passed away early in the morning after around 15 of this breathing change. She would breathe deeply then rapidly, she was hot then cold, and her feet were then very cold and her skin mottled.

her breathing became slower , with longer gaps. It was at this point , when she began to have gaps between breaths, that I went to get the rest of the family (we took turns to sleep for several days) so mam was also with her when she passed.

it might be good for you if other family members were present too? only you know if this would be a support or not.

Just Remember, he is comfortable because of the meds. You can talk to him and tell him all you want him to know, or remind him of nice memories. Hearing is often still present even when the other senses have faded.

sending a hand hold to you at this difficult time xxx

My df passed away at 4.20. It was very quick in the end 🥹

Sending you love OP ❤️

I'm so sorry @Totallybannanas but at least he's out of pain now.

Sending love @Totallybannanas. Xx

Oh, so sorry, @Totallybannanas. Sounds very similar to when I lost my mum. Sending love x

Sending love @Totallybannanas xx

RIP Mr Bananas. Sending love.

I'm guessing you won't be back for a while @Totallybannanas I'm so sorry about your Dad.

I'm just a couple of days behind you dealing with my Dad who has exactly the same issues. It's been awful but strangely I haven't felt alone, partly because I knew someone else was going through the same thing. If you ever want to get in touch and rant, cry, or anything else please message me. You aren't on your own. I'm here, I absolutely get it. I wish I didn't but here we are. Hope to hear from you soon if you want to. Huge hugs xx

I’m so sorry

Thinking of you too @kippersmum. I hope you are doing ok. It’s so hard xxx

It sounds weird , but I look back often on the last few days with my gran and it feels really special. It’s not the way I hope that I always remember her (she was brilliant , so funny and a constant surprise , even in her last months of being very poorly she would sleep for days then wake up and say ‘shall we go to the seaside for fish and chips?!’ 🤣) but knowing that I was there keeping her comfortable and helping her with her passing is a real comfort to me.

Updated as read the rest of the thread.

Thinking of you ❤

How are things with you and your dad @kippersmum? Thinking of you xx

Just to update my Dad died yesterday lunchtime. At the end it was very quick just like @Totallybannanas dad. The family are devastated but equally I feel a sense of relief. Dad was desperate to go. I was with dad when he died and afterwards. The whole family sat in a quiet room. Mum then asked me to get his phone iPad and glasses from the room when Dad had been dead for a while and he looked totally different. It wasn't him. I wish I hadn't seen him tbh. and I can't get that out of my head. Thank you @Totallybannanas for sharing this awful journey with me. If you want to I would love to keep in touch xx

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So sorry to you @Totallybannanas and you @kippersmum for the loss of your dads. I lost mine very suddenly 5 years ago, it still doesn’t really seem real. I wanted to see dad but the coroner took a long time and so ultimately the funeral director strongly recommended that I didn’t.

I'm so, so sorry @kippersmum sending love and strength to you. I am a it further on and those images will fade Kippersmum, I didn't think they would but things from that night are starting to feel blurry now and I feel I'm starting to remember my dad and how he was. Take time to grieve and process things and most of all keep talking , it really does help. Please stay in touch.

Lovely to hear from you @Totallybannanas . How are you finding all the paperwork and other stuff you have to do. I very nearly lost the plot today when the funeral director wanted to know what socks dad would like to wear, somehow choosing the coffin was easier. My dad's funeral is a week on Friday, do you have a date yet? Huge hugs x

There is a lot of paper work and alot to sort out 😔. I don't think I've had chance to digest everything yet as been so busy. Out funeral isn't until 24th October which is ages away, I just want to get it over with. I've just put dad in a new pair of PJ's, he has lost so much weight nothing really fits, I did put fluffy socks on him too! There's so many questions they ask, and so many things I haven't even thought of! I've had to clear his place out which seems to taking up most of my time. Will be glad when it's all over now xx