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.

It is a stage prior to death thought to be due due different chemical processes in the brain. Sometimes a surge of adrenaline. My husband's Marie curie nurse also said with brain tumour patients when they get dehydrated the pressure in the brain falls which can make them more lucid.
I'm sorry you're going through this. My husband died 14 years ago from a brain tumour. It's hard.

Op, you are in my thoughts and prayers too, it's a very difficult time. I hope your mum passes peacefully.

You will look back and treasure the time you had with your mum when she became more lucid.

My dad had lung cancer and he was put on a steroid (don't know why), he came back as my old dad for a few hours, it was beyond strange. The next morning he went downhill so fast. Luckily, the cancer nurse came to our house, put him on the driver and they managed his meds ever so well. He got slightly agitated around 4am, the nurse looked at me and said, well he could do with a little top up. He had had his last dose at 2am and he wasn't due until 6am, he died at 4.35am. The nurse knew what to do and I was ever so glad she did. He passed peacefully with all of us around him. I am all for assisted dying in this scenario. He was not going to get better.

From reading this thread, it does seem that different cancers have different endings. Very interesting to read about liver cancer and the liver not being able to metabolise the drugs, I'd never have thought that.

It makes sense really. She hadn't had more than a few sips of water for something like 3-4 days prior to yesterday. She then had more fluid yesterday than all those days plus together.

Today she's totally the opposite to yesterday. She's slept all day in the same position. She tried to open her eyes once when the doctor came in to try and chat to her, but she couldn't manage it and couldn't focus on anything or anyone, and she just went straight back to sleep. The only movement was like an involuntary movement of one arm that stayed raised in the air for a good few seconds, then she coiled it up and it seemed to twitch and spasm for about 10 mins.

I suspect yesterday was our last day of speaking with her.

I remember when my father was dying, his breaths getting further apart and although I wanted him to live I was also hoping the next breath didn't come. Such a horrible position.

I really feel for you and relate so hard to your updates. In my mum's final days she periodically rallied so much we sometimes convinced ourselves all the medics were wrong. Then it would be back to that brutal, agitated state. It's a rollercoaster. Sending you love and strength. It is a really really hard thing to witness x

God it really.is like that. It's absolutely horrific. Had a call at 2:30am from the hospice saying her breathing had changed and she looked unwell, and if wanted we should get here asap. Arrived to hear moaning, agitated, chest very phlegmy and long pauses between breaths.

I asked the nurses for more pain relief and sedation as she sounded as if she was in agony. It was unbearable to watch. The moaning is now far less, agitation stopped and her breathing back to normal. So I've just said to the nurses I think she just needed more meds to settle her

I want this to be over for her so badly, but it does feel like the nurses have it wrong and today isn't her time.

I feel so sick. Physically and mentally.

I’m so sorry OP. This is so hard on family. We just got into “the zone” with my parents and it felt as though we were living in a strange bubble away from our normal lives. Mum took only a couple of days, but our dad lived 11 days after we were told he maybe only had a few hours, and the exhaustion afterwards was extraordinary.

As well as the grief and sadness, there’s a strange wonder and privilege in delivering one’s parent from this world, just as they brought one into it.

I hope it’s soon for you.

Crikey @SpongeKnobNoPants, you must be absolutely wrung out. Your poor mum. And you all must just be so exhausted from being at the hospice so much. I do hope you can get a sleep in today, and that your mum has as peaceful a day as you can hope for.

I’m sorry OP. I had to watch cancer take my mum over a 4 week hospice stay - horrendous. The pain and vomiting and bleeding were completely inhumane. They should allow assisted dying for hospice patients. Handhold xxx

I‘m so sorry OP.

The breathing changes and noisy breathing do indicate that she could be close to the end, the medication could be masking it a little.

What does her skin look like? Any mottling around her feet or knees? Are her hands changing colour at all? These can all be indicators.

Sending a hand hold for you. ❤️

It's a tough time OP, that's for sure. My husband had this agonal breathing. I have a video of him and he'd take a breath and it was up to 50 seconds before he took another. He died a few days later. If Friday does become the last day of you speaking with your DM then I hope you can take comfort in those memories of her enjoying the sunshine and her saying she loved you. It's hard, because it's natural for us to obsess over more negative times. When those thoughts creep in, try to turn them back to the sunny day x

Having watched both parents die in a horrendous way I am praying that we get a euthanasia bill before it’s my time, The whole process is cruel and we should be honest that pain meds and palliative care don’t stop all that. Dementia patients literally eat themselves or self cannabilise, cancer patients in so much pain. Everyone who goes through this needs to campaign because keeping people alive only benefits care home owners many of whom are off shore. The only relief is that usually the acute stage is over in 2 weeks.

My advice is once this is over including the funeral get some time away eg abroad to adjust your head. I think that the process can give people PTSD. But we are not meant to talk about it and use euphemisms like ‘passed peacefully away’ forgetting the catheters, bed sores, sheet clutching, dry mouth, facial grimacing etc. This is the most diabolical con and we as a civilised society should demand that it stops. it’s almost as bad as the child birth con.

I completely agree. Due to our advances in medicine we should not allow any human to suffer.

She did pass away this morning. About 2hrs after my last post.

I'm beyond exhausted. I've been through around 3 traumatic experiences that left their mark on me, but nothing will haunt me for the rest of my life like this.

We put animals to sleep to save them from suffering unnecessarily and we call it the 'humane' thing to do. But we don't do the humane thing for actual humans. Why can we show humanity to non-humans but show none for our own kind.

I've never known emotional pain quite like this. I hurt to the core of my very soul knowing what she's suffered. It's fucking barbaric.

Gosh OP, I am not surprised you feel dreadful. Do you think you'll sleep tonight, given how exhausted you are?

I always think of this verse when I am exhausted:

"Sleep that knits up the raveled sleave of care,
The death of each day's life, sore labor's bath,
Balm of hurt minds, great nature's second course,
Chief nourisher in life's feast"

I agree that the assisted dying bill can't come soon enough from my point of view. It seems cruel.

I am so very, very sorry for your loss.
Words for another time. One day, in time, this part of your mum’s story will recede and the majority of her life will be at the forefront.
The next few days will go by in a blur I know you and your siblings will support each other.
Planning a funeral enables you to think about and discuss your mum in all of her glory.
But right now, your adrenaline will still be running and you need to do the best you can to take care of yourself.
All of our thoughts and prayers are with you.

Agreed.

Oh poor you. I'm so sorry @SpongeKnobNoPants . It is barbaric that we leave people to suffer in these ways.
I am thinking of you, and hope that, in time, these memories fade, and you can recall the good times more easily. It will be too raw and fresh right now, but sending you hugs.

I’ve just read this thread having been told last week my mum has only a few months left due to spinal cord tumour. Still in shock really.

Ah love, so sorry for the loss of your mum.

How her heart must have felt though knowing she had you all looking after her in the way that you did. ❤️

For what it’s worth I couldn’t agree with you more regarding the AD bill and I hope it comes soon.

I'm so sorry @SpongeKnobNoPants

so sorry about your mum xx

I'm so sorry, OP. My DM died of cancer many years ago now, but I still remember how frightened she looked and how unprepared I was.

It's very, very tough. Time blurs past you with some things in sharp relief, and then slowly life starts to feel normal again. And as DM herself used to say about someone you loved dying, 'You get used to it, but you never get over it.'

Her suffering is over. Your next journey begins as you grieve and try to recover from the trauma of the past while.

I'm in tears reading this. I had similar with my youngest sister, aged 49. I wish I had her back. But I can't.

May they all rest in peace now.