Handhold please - in hospice with dying mum *TRIGGER WARNING*

[SpongeKnobNoPants]

TRIGGER WARNING Terminal cancer

Sleeping over in the hospice with her tonight just waiting for the bastard evil cunt of a brain tumour to take her.

I can't sleep, I can't eat, my stomachs doing somersaults and so fucking knotted up and having waves of crippling panic.

I can't bear it. It's such a cruel way to go. I'm so desperate for it to be over for her. Literally begging the universe to hurry the fuck up and stop dragging out her pain.

You have been in my thoughts all day since I read your post.
It is such a place to be in - nobody understands until they have been through it. It is also upsetting even if you’ve had a wonderful relationship, to see a beloved parent reduced to nothing.
I can remember sitting on the steps of the hospice praying for the end to come that night. It is such a vivid memory.
One thing I do know is that the terrible times you are going through now will be replaced in time and your mind will revert back to memories of your parent when they were well. You will be able to close your eyes and access so many, many happy times.
I absolutely promise you that, although I know it won’t bring much comfort tonight.
I am not much of a one for prayers but your mum will be in the ones I say tonight. I hope she can go easily to rest now.

Been there and it's bloody awful. I'm sorry you're going through this my lovely.
Hopefully, like they did with my dear dad, they'll increase the morphine, so that her passing will be peaceful.
You'll feel relieved, then guilty, but that's natural. Take each thing a step at a time and try not to feel ashamed or guilty about your feelings. Sending hugs and strength to you.
🤗💐

I’ve been in this position with my own mum and it was horrendous. I’m so sorry you’re going through this. I took in a few bits like skin care and gave her a mini facial each morning and applied hand cream for her. I also took in a speaker and we spent the final day playing her favourite music and I caught her up on the Archers. When she died we’d just played her the final episode of the week and the outro music was playing. We figure that’s when she knew it was ok to let go. It’s so so tough to be in your position, do keep trying to take care of yourself, take regular breaks from the room and get fresh air. Talk to her about your favourite memories of her and how much you love her - she can still hear you so all you can do right now is help her to feel safe and loved before she passes over to the other side. Sending lots of support xx

How are things, @SpongeKnobNoPants ?
You've been in my thoughts overnight.
Sending love and energy. Xx

She's still hanging on. Still having moments where the Midazolam wears off and she starts coming round and trying to talk. So they give her more, but it hurts her when they inject it. It caused her so much pain last night.

I didnt stay over last night because it had made me ill the night before and I had to go home in the morning and get some sleep. But I was so exhausted I didnt get back to the hospice until 4pm. Which made me feel so guilty. So I thought it best to go home of a night and sleep properly so I can be there throughout the whole day.

But then I spent the night feeling horribly selfish and guilty that I'd left her alone. And that she might come round again in the night and see that none of us were there, in pain, frightened and confused. So I'm rushing to get up there now.

She can't bear it. I can't bear it. Family can't bear it. Assisted dying in cut and dry cases like this really ought to be legalised, because its inhumane to let people suffer like this.

We went home to sleep. BiL popped down to Costa. By the time he got back she had gone. Thinking of you

Not with a parent, but with my Uncle. Terminal cancer, and was in cottage hospital, with each of us taking shifts. My Mum (it was her last brother) was there almost constantly for about 4 days. That special kind of silence in hospital at night, when you're sitting vigil, is just eerie - and it seems like it's going on forever. The one night she went for some sleep at his house (it was about 2 hours away from us), he passed away. Almost like he was waiting for some time alone; or to have some peace from my Mum's constant chatting to him(!)

But seriously, you have my deepest sympathies. Watching someone you love suffer like this is inhumane. It's so painful to experience, for you, and the individual, of course. They do say that hearing is the last thing to go. Playing some of my Uncle's favourite music did seem to settle him a bit, so I played some things from Spotify and YouTube, via my phone. He seemed to try and sing along at one point - but we might have imagined that. Maybe that might help, but yes, I fully understand when you feel it's just their time.
Sending supportive thoughts to you. Take care of yourself too.

Hey, I’m so incredibly sorry you’re dealing with this @SpongeKnobNoPants . In a society as advanced as ours, no one should suffer a death like that. We have the medical and psychological knowledge to help people with the fear of death, and the medical knowledge to make sure they don’t suffer. It is very, VERY common to have a turnaround right before the end. It can feel so cruel, because it creates a kind of false hope; I saw it again and again in hospice. That sick feeling you have will be lack of quality sleep (even if you’re sleeping, I doubt you’re getting any deep sleep right now). Please do NOT feel guilty when you feel relief that’s she’s gone; she’s in pain and sometimes afraid, and no one would want that for someone they loved. I wish you the very best. Life is hard as fuck sometimes, isn’t it?

My Dad tied of a brain tumour it was horrific. He had seizures at the end which woke him and left him in so much pain. I was just so desperate for him to go so he wouldn’t be in pain anymore. The tumour had also changed him by the end so we’d lost him before we lost him. Sending you a hug x I really do understand x

Oh, @SpongeKnobNoPants PLEASE don't feel guilty, although I completely understand where that comes from...you poor old thing, I'm sending you a real hug, you need someone to rub your back, and tell you it'll all be OK, just like your mother would, you need your mother, but she is difting off; I wish I could do that for you. This is raw and brutal. You are in my thoughts. 💔

I get it. It’s an awful way to go and you feel helpless.

You and your mum and family are in my thoughts and prayers @SpongeKnobNoPants 🙏

Sending my love @SpongeKnobNoPantsI’ve done exactly what you are doing now. Can they not set up drivers for the Midazolam and morphine so there is no break? We did 3 weeks sitting there too. Brain tumours are such anguish watching someone you love with one. We were fortunate the staff did control the pain, but it did mean they were not really conscious for the last 2 weeks, which was good for them but I felt I’d lost the last chance to talk.
I wish there was something I could say but it’s just hell to sit there through the days and nights. I hope there is someone with you to share the pain. Sending you love.

She does have a driver with Midazolam, pain relief and anti-sickness drugs. In fact she has two now. She also has a canula in her arm and her leg for top ups in between.

And yesterday they apparently put her on stronger sedatives that should make her sleep even more, but we've had the strangest day where shes spent far more time conscious.

It's been a nice day so they wheeled her bed out onto the patio outside her room, and she's been out with us all day enjoying the lovely weather. Shes spoken multiple times, drank sips of water, juice and tepid tea. She even ate a small ice lolly. She struggles with her speech massively and we often can't understand her, but she was able to tell us she loves us, tell me she liked my sunglasses, told my sister she liked her hat, that she loves the gardens in the hospice, she even made us laugh a couple of times. She listened to some music and tried to dance with her hands and wiggled her feet and told me "I love this song" when Lady In Red came on.

I don’t know what to make of it really. Its been nice, but also confusing and has had me questioning things.

Oh bless you @Andouillette . I’ve been in your shoes. Sat with my mum for 18 hours. Previously been with her for a week. In a hospital, but they moved her to private room when the end was inevitable. Said the family should visit. So grandkids came in and said goodbye. I sent them home, and waited for hours. I can still see that clock on the wall, ticking louder than usual, and slower than usual. Willing her to let go. She was afraid of death too. Her breathing changed and the animalistic sounds she made still haunt me. Doctor insisted I went home because she said nothing would happen overnight. I went home and spent a sleepless night waiting for a call. It didn’t come. I was so traumatised by the past week, I was exhausted and trying to get myself together to go back to the hospital to wait. Then I got the call. She wasn’t alone, a nurse was with her. It happened very quickly at the end. And I felt relieved. She had finally let go.

Oh, OP. This is what’s called terminal lucidity and it’s so, so precious. My Dad was back with us for only about 5 minutes but it was wonderful.

Thinking of you. Keep drinking, try to eat what you can.

My Dad died in a hospice from liver cancer, his last 7 days will haunt me forever. His liver wasn't metabolising the drugs in his syringe driver so he was agitated, pulling the sheet off over and over and I remember begging them to give him something, anything. Makes me want to punch people who argue against assisted death.

I hope your Mum has a peaceful journey from now on. It's the hardest thing I've ever done, sitting there for nearly 4 weeks with Dad.

I am so sorry to read this and I know how awful it is.
My dad passed away nearly 7 years ago age 74 from prostate cancer. He was in the Royal Marsden and had been on a 1st stage trial which didn't work. He had run out of options of treatment. I remember sitting by his bed with my mum and sister and just waiting for the inevitable. He got quite agitated the night before.

8 months after he died my mum was diagnosed with a terminal brain tumour.
Towards the end it was pretty terrible...there were times when I visited her in hospital and she didn't know who I was. She passed away at home in 2022, age 75.
Sadly, I wasn't there-i had visited the day before but my sister was there ( unlike me she lived very close by and didn't have children to deal with....but I always feel awful that I wasn't there.) Even now I do find it hard to remember her when she was well.

Sorry, posted too soon.
I wanted to say that I am thinking of you and your mum x

Yes. This has happened with relatives of mine a day or two before death. Thinking of you @SpongeKnobNoPants, hold on to today’s lovely memory.

I'm glad you've had a good day with your mum @SpongeKnobNoPants

I'm thinking of you and your family.

Thinking of you and your family here too, @SpongeKnobNoPants
The terminal lucidity is the weirdest thing, isn't it? After two days of sitting with him, my relative sat up in bed, asked for ice cream, sang along with a couple of songs, and then lay down and went to sleep. He passed away just over 24 hours later.

The day you’ve had with your mum I promise you will one day will be very very meaningful to you. It’s human to be confused as she’s rallied a bit - that’s not unusual.
I had a day like that with my dad where he was able to tell me he loved me. The actual last thing he said to me was ‘Brexit, my arse!’ and that was my dad. A funny fecker until the end.
That day was a little gift for you all, I can promise you that.
I hope that she can go to her rest now. We are all thinking of you on this thread.

This happened to my friend recently who lost her Dad. I’ve heard that this can happen, something to do with the loved one instinctively slipping away in private.

What is meant by 'rallying'... does it mean she's trying to fight against it?