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.

Is she in pain? If she is, can they top up her painkillers? I get it. Lost my mum to cancer earlier this year. Handhold

I'm so sorry
It's fucking awful.
You are there. That's all she needs. X

I know your pain. Trying to keep vigil when our own families/ourselves needed us/a rest. In the end we all went home to our beds each night hoping for 'that' phonecall in the morning. It took two whole fucking weeks! We were grief-stricken by the whole situation, and just mightily relieved when it was over. Handhold for you, my love x

She has you there with her in her last days and that means a lot, especially since it's such painful undertaking for you to watch her suffer. Here's a handhold. I hope you find some peaceful moments.

@SpongeKnobNoPants I'm so sorry you are going through this most cruel experience of witnessing your mum's dying. I hope the hospice are giving her all the end of life drugs to keep her as comfortable as possible. Sending you a massive hug. Hang on in there.

Dosed up constantly on pain meds and sedative. But she keeps coming round, writhing, pulling at her bed sheets and clothes, vomitting, reaching out or trying to get up, twitching, grabbing at her head, kicking out (all very slowly though). All meds keep being increased, but the moments she comes round are just horrific.

This must be one of the most intense and cruel ways to witness death. Please take comfort and strength from knowing you are doing all you can and that soon you can rest. Much love to you

She's in her third week of being in the hospice now. It's felt like a lifetime. Time seems so slow in here.

Weirdly, after the first three days of pain relief and anti-sickness meds, she massively turned a corner. Was actually up and about, talking, had a couple of showers, got dressed. And it lasted a good while. The doctors were so pleased with her improvements they started planning on discharging her and a physio started bringing walking aids and getting her to do light exercises. She was so determined and positive.

But then Weds last week she felt a little less well, Thurs a little less. And then from Friday onwards with each new day she just got drastically worse and worse.

I am so sorry OP, I can only imagine how desperately hard this must be for you to witness. I hope your DM can be given more drugs and that her passing, when it happens, is peaceful.

I’m sorry, it’s so hard isn’t it? 💐

You probably know best how your Mum reacts to things because you know her so well - and so if you think she’s in pain please speak to the team and let them know you think she needs more pain relief. Sending you a hug.

I’ve been where you are with my Dad, and I’m thinking of you.
Hope the end comes peacefully and soon.

Thanks for everyone's kind words. I put the phone down and tried to sleep. Nodded off until about 7am and then I woke up feeling quite ill. So I went home and siblings took over. Went to bed and conked out until about 30 mins ago.

She's still there, hanging on. She was so afraid to die. Just breaks my heart.

Thanks everyone for all you kind words, it means a lot ❤️

Been through it twice with both parents and it’s absolute hell.
It changed my view on dying - I now fully believe in assisted dying and would choose it for myself rather than going through what your mum is going through now.
All I can say is, it does sound like your mum is declining very quickly so I shouldn’t imagine it will be long.
I am so glad you have siblings to support you.
So very, very sorry you are going through this.

Fellow traveller here also, big wrap around hug to you.

I don't know if you want to ask (or have already), but hospice staff and medics usually have a good idea of when her time will come. There are signs. I know that many can "rally" and be quite active and somewhat agitated just before the end, and that can give everyone a huge fright if you are not aware that it can happen. It is not a signal of improvement.

It is so very sad, terrifying and exhausting. Many of us have been on the same journey and all I can is send on kind thoughts now. We all deal with death in our own way.

Oh, @SpongeKnobNoPants I'm so very, very sorry; i can feel the pain emanating from your words.
It is horrible, watching the grabbing at air...the distress...I would try hard to exhort the medical staff to increase the end of life meds, is she on a pump of diamorphine( or similar), an anti-sickness etc...?
I watched my dad die like this. In the end, it was peaceful but he wasn't in a hospice, just a nursing home, and I had to advocate so, so strongly for him. ( But I am a nurse, and have witnessed many, many deaths, some peaceful, some not...and I knew what meds were needed for a peaceful end, both for the person dying, and, almost as importantly, for their loved ones.

We had the added distress of my mother going down ( aged 83) with the Norovirus that swept through the nursing home. I had to take her to A&E for IV fluids and anti-sickness meds. He died at 00.24. I had to be on a train back from London to Dorset at 10.20. I just got back home before I started vomiting from same norovirus. But my enduring memory is lying in bed 1 day later, and having the luxury of time to write the eulogy I read at his funeral.
His funeral ( he was a vicar) was in the church I grew up in, the church was my playground...and I was privileged to speak and it helped, enormously.
OP, Your experience has resonated with me, I will be thinking of you, in this most brutal time. Xx

Also, Sponge, it helped me a lot, to write and read his eulogy...it may not be for you, but the raw, brutal grief that followed, was definitely ameliorated by my being able to do this...
Know that you are in my thoughts. X

Much sympathy from me too. Went through it with my mum, albeit at home, and it is really distressing to see. My mum said she’d had enough weeks before she actually died; I was already an advocate of assisted dying but it just confirmed it for me.

Sending you a handhold. The worst thing is you want it to be over for their sake, but you want them to not go for your own sake.

Big handhold from me. Keep talking to your mum, reassuring her, whatever she might find comforting. I held my dad’s hand, we dabbed his face with a damp flannel as he seemed quite hot and sweaty, anything we could think to bring a bit of comfort.

Drink tea, lots of tea. Try to eat little and often. Sending love

Goodness, you poor thing. What a truly terrible time for you. How did you cope, because I feel like I'm sinking.

It is sinking, isnt it?
You'll get through it, because, well, you just will. But the sorrow and grief if awful, I felt as if I just had to tell the guard, on the train back, that my Dad had just died...I didn't, but wanted to scream out my sorrow.

I'm so sorry you and your Mum are going through this.
Sending love to you x

Im so sorry you’re going through this. I care for patients at end of life so I know the turmoil of them end days and weeks when you just wish it would end.
is she on a syringe driver? If not it gives a steadier dose of pain relief, anti sickness etc. if she is wakening and becoming distressed her meds need altered.

its such a terrible situation to be in. just rest when you can; take short breaks. Step outside, have a breather. Lots of love

Sorry to hear this OP. I lost my DH to cancer almost 2 years ago and in his final weeks it had gone to the lining of his brain. His behaviour was manic and awful and it was very distressing. It's not uncommon for people to rally a bit at the end, especially on new meds. I assume your DM is not eating or drinking much if she's sedated? If that's the case then she'll be very close to the end. Keep talking to her and tell her it's ok for her to let go. My dad kept holding on with his cancer and it seemed only when we gave him our blessing to let go that he finally did. I hope the end is as peaceful as it can be when it comes. Take care.

Op hugs.
From experience ask for higher amount of drugs.
My mum wasn't given enough in the right timings, maybe because we cared for her at home and each time it involved phone calls to hospice nurses etc that came out.
My mum's distress I believe could have been made less.
I'm so sorry op. I understand how utterly ill you feel yourself too.
Xx