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Original poster

So so so shit

193 replies

NooNakedJacuzziness · 09/05/2024 18:31

Waiting for my Dad to die and I can't do this. Pancreatic cancer spread to liver, he's so uncomfortable and they can't do anything to help him now. This is beyond distressing - you would put an animal to sleep. Just wanted to vent - he doesn't deserve it.

OP posts:
Original poster
NooNakedJacuzziness · 10/05/2024 07:16

No @Higglings, he was being stubborn about having a proper bed but we will be overriding that now!!

Thanks again all, so sorry to hear all your stories, I'm reading all your comments - sorry not to mention you all but thank you for sharing

OP posts:
ShowOfHands · 10/05/2024 07:19

I sat with my Grandma on the longest night at the end. The agitation and confusion were the hardest parts because we couldn't do anything about them (we did call for a nurse or doctor but they took 17hrs to come out and arrived as she was actively dying).

I brushed her hair, put cream on her hands and feet, sang to her, told her about memories of family Christmases. This was just before COVID and my memories of her have settled into good times rather than the long hours and minutes by her bed at the end.

Sending love and light to you.

Arriettyborrower · 10/05/2024 07:22

Sending you and your family love, my husband died of this last year, it was rapid and brutal, but he was well managed with a syringe driver that was increased/changed at the very first sign of distress. Absolutely get the hospital bed, DH accepted it fairly early on and was grateful for it, I asked for it in the morning and it was there 4 hours later which was a huge relief.

Keep doing as you are and calling for help at the earliest time, I know this is exhausting in and of itself x

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AmberExpert · 10/05/2024 07:25

No words of wisdom, but just wanted to send you a hug and some virtual support ❤️

Higglings · 10/05/2024 07:35

NooNakedJacuzziness · 10/05/2024 07:16

No @Higglings, he was being stubborn about having a proper bed but we will be overriding that now!!

Thanks again all, so sorry to hear all your stories, I'm reading all your comments - sorry not to mention you all but thank you for sharing

Good, he'll be more comfortable in one of those.

Make time for yourself OP.

Sajari63 · 10/05/2024 07:41

So very sorry for what you're going through but you really are doing your poor dad proud. I lost my mum and dad to cancer and I hate this disease with everything I have. Mum's was lung cancer in 2017 and her end was horrendous. She was frightened but in hospital with a syringe driver and she fought all the way till the end.

Dad's was liver cancer and during lockdown so we were banned from seeing him from March to June 2020 when he died in his nursing home without me being there - I was phoned 10 minutes before he took his last breath asking if I wanted to come through which was a 30-40 minute drive away ....

You'll take comfort from the fact that you were able to care for him at home as per his wishes and you should be very, very proud of this.

Sending love and strength and hope your poor Dad's end is peaceful. You're doing everything right xxx

abracadabra1980 · 10/05/2024 07:43

I lost my dad with this last year. He also had Parkinsons and Lewy Body Dementia. The cancer was found in the last 3 months or so. He was on slow release Morphine, 8am and 8pm, paracetamol (which I thought ridiculous at the time and when queried it I found out it actually enhances the effect of the morphine) and top ups of liquid Oramorph. As a family we constantly asked what he'd had for pain relief and I slept next to him on the floor in the last few days, to make sure he didn't go a minute in more pain than he should have done, as he couldn't speak. He passed peacefully and slept for the most part of the last week.
What I don't know, is whether he was also at the end of his life with the dementia, as for a cancer patient, he was in pain, but not once did he appear in agony. The main pain he complained about was back pain.
I'm so sorry you are going through this. If you are really struggling I'd suggest seeing your GP. I was on medication throughout dads (very long) illness, as the Parkinson's /LB went on for years and really took its toll. It helped enormously.

abracadabra1980 · 10/05/2024 07:45

FionnulaTheCooler · 09/05/2024 18:36

I'm so sorry that he has to go through that. I hope this country legalises assisted dying for cases like his, I'd far rather die quickly from a massive morphine overdose than linger in pain. Like you say, we wouldn't let a pet suffer like that, I had a cat with cancer and the vet said the kindest thing to do if the exploratory surgery revealed that it was advanced was to have him put down under anaesthetic so that he never woke up, so that's what happened.

I could have written this myself. Let's hope Esther Rantzen's efforts this time round will yet again highlight the desperate need for this and actually get this bill through.

abracadabra1980 · 10/05/2024 07:53

@FoofOfTheWalkingDead this sounds like a really well managed end of life. Such a relief for you.

Mischance · 10/05/2024 08:06

My OH was supplied with an "end of life pack" which the nurses used to keep him out of distress. It contained all they needed: pain relief, tranquilliser etc. He died peacefully.

Original poster
NooNakedJacuzziness · 10/05/2024 08:16

I've asked for nurse to come again as soon as poss. They couldn't do much last visit as he was sort of sleeping but as soon as they left he started hiccuping and groaning. We just want him asleep and comfortable whether he can consent to treatment or not.

OP posts:
jackstini · 10/05/2024 09:12

Hand hold here OP - it's a horrible time and you are lovely for being there

Hope the nurses can keep him pain free

MsMuffinWalloper · 10/05/2024 09:15

Had the same with my mum and agree. I can't believe people can't see how inhumane it all is. Huge hugs and hand hold OP, it's hard when they are in so much pain you can't touch them. I really feel for you. Let him know it's ok to let go and you love him.

Starlight1979 · 10/05/2024 09:20

Hotpinkangel19 · 09/05/2024 21:43

The same happened to my mum. I had no idea she wouldn't talk again, i wish so much that i'd have known.

Show quote history

Same here. She was admitted to the hospice and one morning she seemed ok and we were sat chatting whilst she was having breakfast, the next minute she was extremely agitated, was put onto midazolam and a morphine driver and that was it. She was so out of it she didn't speak again and died about a week later. I wish I would have known that the conversation about what pudding she wanted would be the last chat we would ever have.

Sending so much love to you OP @NooNakedJacuzziness and everyone else who has been through / is going through this x

Bassetlover · 10/05/2024 09:26

My brother had panreatic cancer, you've done the best thing calling out the hospice at home team. They should be able to help. My thoughts are with you ❤️

KnitnNatterAuntie · 10/05/2024 09:27

I'm so very, very sorry . . . have been through a similar experience twice

Sending you and your family love & hugs

💐💐💐💐💐

Starlight1979 · 10/05/2024 09:35

NooNakedJacuzziness · 10/05/2024 06:45

He fell out of bed and we had to get ambulance to put him back in - it just keeps on giving. Luckily he was still a bit sedated so don't think he realised what was going on. Too early for gin???

@NooNakedJacuzziness - Never too early for a drink at times like this.

We went through this with my mum last year (in a hospice) and it was horrendous. You don't want them in pain but also don't want them completely out of it on medication (which my mum ended up being). It's so hard.

On a lighter note, we had a constant stream of wine arriving in our private room for my mum's last week or so. I don't think family and friends knew what to bring for me and DP whilst we were camping out so they'd just turn up with alcohol and snacks. The nurses found it hilarious that every time they came in, there would be more people and more wine! Things like that make me smile when I think back to that dreadful time.

Do what you need to do to get through it. Cry, laugh, talk, drink, go outside and scream into the sky... There is no right and wrong! You are there with him and that's all that matters ❤

Lightfrost · 10/05/2024 09:38

Still thinking about you this morning and sending a hug. It's so tough isn't it, and the exhaustion is like no other. You're doing so well advocating for your Dad's needs.

I hope that the remaining time with him is filled with love.

Original poster
NooNakedJacuzziness · 10/05/2024 09:40

I can't thank you all enough, you've kept me sane. Nurse has sedated him again now so he's sleeping. I don't think this will go on much longer now

OP posts:
Lotsalotsagiggles · 10/05/2024 09:56

Your being so brave

Remember that

Its so hard to explain this stage u less youve sat there, must all feel a blur

Remember to drink and eat, it takes it out of you too xxx

Noseybookworm · 10/05/2024 09:59

NooNakedJacuzziness · 10/05/2024 09:40

I can't thank you all enough, you've kept me sane. Nurse has sedated him again now so he's sleeping. I don't think this will go on much longer now

Hope you have a peaceful day and your dad remains calm and resting. Sending you a hug - it's such a difficult time for you all but you are there for your dad, doing all you can to make his last days peaceful and comfortable. Look after yourself lovely 💐

Onand · 10/05/2024 10:06

Look after yourself OP, it’s horrific and truly the worst experience- I went through the same thing with my mum. Seeming like the end and the actual end can often be quite a long gap so get all the help you can.

Your poor Dad, I hope it’s sooner rather than later.

FoxtrotSkarloey · 10/05/2024 10:14

I'm so sorry OP. Nothing is worse than feeling helpless at a time like this. Please just keep calling and asking for the support you need.

Have they discussed a syringe driver?

coffeeisthebest · 10/05/2024 10:31

I'm so sorry you are right in the thick of it, I lost a parent to cancer last year. I had a conversation with a friend of mine who is a doctor towards the end and he told me to be really frank with the end of life care team, and I am really glad we did as my parent was in so much pain and we just wanted them to be sedated but the team had been trying to keep them conscious so we could still talk to them. The suffering was awful and I also agree that the lack of choice (of being able to lawfully end life) with regards to this level of suffering feels completely inhumane. My parent was completely clear and lucid about just wanting to die, but nobody could actually support them with that.
Take care of yourself OP. It is a horrible and painful experience but it was more than that too, I found it humbling and I felt deeply connected and privileged to be there with them. Make sure you have support around you from those you can talk to honestly and frankly.

Undercovermole · 10/05/2024 10:34

My MIL died from this last year. It's very distressing but the end does come very quickly so hopefully he won't be suffering too much longer.

She also had terminal agitation which was horrible but they prescribed her Midazalam in the last few days and that calmed her down completely and she seemed at peace.

Wishing you all the best x