Sitting with my Mum ... how ridiculously hard this is

[Twinkle71]

DM has battled bowel cancer for 4.5 years . Spread also to liver and lungs.
She is fading away day by day. I’ve moved into their house today to give Dad support.
She is yellow, puffy, confused, sleeping all the time. No mobility at all. Losing control of bladder and bowels. But has moments of lucidity, will manage to eat small mouthfuls of food and sips of water.
I have two teenage children at home with sickness bugs. I’m lucky to have a really supportive DH.
I feel so torn. I feel so guilty wanting this to be over.
How long can this twilight zone go on for? 🙏🏻

Wishing you love and strength at this sad time. We are holding your hand from afar.

🤝

Sending love, handholds and an unMumsnetty hug

My grandmother passed a few hours after her hands and feet started to turn blue. She was peaceful and it was a gentle thing. I hope and wish the same for your mum

She is trying so hard to rally. Has been unresponsive for most of 24 hours and has now asked for water and drunk 1/2 of glass.
I feel like I’m on a rollercoaster 😥

I sat with my lovely Dad whilst he died and have felt all of the emotions you describe. I remember saying to my brother that I’d smother Dad if I knew I’d get away with it. I wanted it all to end for him because of the pain. I’ll be thinking of you and your Mum

It certainly is a roller coaster for you. Stay strong.

Hold on to that moment of stubbornness, in later months and years it will bring you a smile.

Will be thinking of you all

How's it going today OP?

Still here - thank you for asking 🙏🏻
Slower breathing , more agitation, unresponsive again. She has her grandchildren popping in and out and we are alternating between laughing and crying .
Our lovely hospice at home nurses are amazed at her resilience. I guess she will pick her time when she is ready 💔

Thinking of you Twinkle. Just a tip. You mention she’s increasingly agitated. I don’t know if this has been done but there will be Midazolam or similar in the ‘just in case’ medication pack that you have there if the agitation becomes distressing. The hospice nurses will I’m sure be happy to administer this. Truly, painful as this is now you will look back and feel so grateful that you had this opportunity to give this love and care to your lovely Mum as she leaves this world. 💐

No words @Twinkle71. Just all the support we can offer as you navigate this painful path together

Hope you are all okay

It is so hard. My DF died in the Sumer. He had prostate cancer which had spread. He walked into a hospice to sort out pain management and around 3 weeks later died there. Although it was quick I am still very glad he didn't linger too long as it was heartbreaking seeing him, a shell of the man he was.

Hopefully your DM will be set free soon.

I have no experience of this, I lost my DM so suddenly we never said goodbye, and it breaks my heart every day.
I just wanted to tell you that I admire you so much, and am thinking of you, sent up a little prayer this morning for you and your mum 💐

You're being a wonderful and human, daughter. These will become precious memories. Thinking of you.

I am thinking of you. This is so hard x

@AlexaAmbidextra yes she has had that drug this morning and it has really settled her- thank you!

I just can’t believe this is still ongoing. I’ve read and googled about end of life and she has presented with all the signs for about 4 days now. Cheyne stokes breathing with a rattle. Ice cold hands. Agitation and clothes pulling. But still she is not letting go. It is so distressing to watch. I pray she lets go soon 🙏🏻

Going through the same but in my case it's my 13 year old daughter. In September she relapsed for the second time and refused any chemo. We was told in October that she had weeks to live and didn't think she would make it to Christmas. But she's still here, can't use her legs anymore, only eats tiny bits but still drinks and sleeps majority of the day but struggles at night. We keep thinking it's nearly time but then she throws a curve ball and seems to perk up. She's up and down all the time. We have had the palliative care box for some time but with how stubborn she is won't take any calming medication as she doesn't like the feeling. She has patches for pain and top ups of morphine when she needs. We don't have nurses round that often as we can cope with her personal care as she's small. What's difficult is seeing her turn into skin and bones and telling me how fed up she is. Only last night she said how she didn't think it would be this hard for her and that emotions are hard for her. I also feel so guilty in thinking of the future without her before she's even gone. Maybe I do this because I'm pregnant. I do feel for you OP this has been the hardest time of my life

Oh millet. Words cant make it better but I am thinking of you.

Thinking of you both Twinkle and Millet xx

@Millettmum I am so so sorry. I can’t even begin to imagine how hard this is for you and your family. Life can be so cruel. I am sending all my prayers your way 🙏🏻

Oh @Twinkle71, so sorry. I hope she has a peaceful passing and is not as agitated or distressed now she had the medication.

@Millettmum, my heart aches for you.

Gentle very unmumsnetty hugs to everyone.

I've known family hold the hand of their dying relative and told them it was ok to let go now and be at peace. The will to live is so strong even the most sick people will hang on, but it's ok to reassure them it's time to let go and that you are all there with her

Sorry @Twinkle71 I’ve been there with my father. Extremely hard. Don’t feel bad for wanting them to go.
I’m wondering why you haven’t been offered more help though. We were offered overnight nurses, as well as nurses throughout the day. We declined the overnight care.
I did the same as you, moved in with my mum and still went to work (no kids though) and it was exhausting, but didn’t go on for that long. He was diagnosed late.
Can’t imagine how you feel.
The medical staff will know if she’s in pain, so try not worry about that.