My mum is dying and I'd like this space for comfort please.

[Knackeredhamster]

Non Hodgkin's lymphoma.

12 weeks since first investigations.

She's late 70's. It's a total shock. The hospital care and communication has been rubbish.

Anyway here we are. We fought to get her home, she thought she'd never see it again.

I just need this space to come to as she's declining fast. Watching her cry and begging me to stop it all is killing me.
I just need words of anyone going thru this or having done in the past.

It's hell. I'm so so exhausted with each day, each decision, the uncertainty. I know it's not about me but I'm trying to do my best.

I'll come back. My thoughts are with anyone going thru this or having gone thru end of life.

Xx

Thankyou.

X

just take each moment at a time, and keep being brave. You'll need to make time for yourself later. You're being exactly what your mum needs you to be, so be proud of that. sending hugs

Thankyou I have to remind myself of those things.

She's really fading now. We had a week where she plateaued I think they call it.
The last few days her eyes are less bright and she's withdrawing. This has happened fast. She's turning into not being her. Although she's still there too.
It's another step and it's like restarting grief all over again.

It's so bloody 😢

So suddenly in the world of approaching funeral directors.

It doesn't make sense. Even though you know it's inevitable.
She's still with us tho.

sending you hugs. be kind to yourself x

Thankyou XX

Ah gosh, I went through this 10 years ago with my mum and then 9 months later with my dad. It's just the hardest thing in the world to live through. Nothing worse than watching your parents scared and in pain. You are giving her such fantastic care and support though and that's all you can do. I hope you are doing ok. xx

I'm so sorry. Went through similar in April and it's horrific. Same area and with St Luke's.

Would recommend ringing MacMillan helpline and speaking to a nurse for any advice you need. I always found them v helpful.

If you have any time to read, then follow Dr Kathryn Mannix on fb and read some of her posts on the dying process.

Sending you much love. Feel free to PM me xx

If you are still looking for a funeral directors then Rupert and Clare from www.thegreenfuneralcompany.co.uk

made the funeral process a lot more normal and gentle then it would have been with a standard funeral directors. They were wonderful

To all those who are facing such sad times - hugs. Take all the help and support available, shout if you are not getting it. Be kind to yourself and just take everything one small step at a time x

Thankyou for your words.

It means so much.

Yes we seem to be in the same area bamboo.

You're in T?

I'm not far. We're going with a local company. V simple. No bells and whistles.

It is so awful seeing them struggle. Doing all we can to get the right meds in. Seems to be a bloody reluctance to this whilst she still has the swallow reflex or action. Prob is if district nurse or GP sees her not struggling so much they're reluctant to go for syringe driver way in.
But last night we had out of hours in to give injections.

I don't want this to be a fucking battle. We know what her 24 hours is looking like the past few days. So have to advocate for more calming meds now. It's too blood miserable for her.
To be fair she's gone downhill rapidly.
St Luke's couldn't be more helpful or kind tho.
They report back so well and we couldn't do without them here at home xxxx

Love to all X

Very kind

Xxx

My heart goes out to you and the support on this thread is lovely.

My mum went through this with my Grandad and said she found it helpful to write his eulogy whilst he was still here. You mention funeral directors which is what prompted that memory.

Wishing you a peaceful day

Sending lots of love.
my mum was 90, in a care home with dementia and suddenly went downhill in less than a week.
I had a lovely visit on the Thursday, Friday she fell and spent 2 nights in hospital. They sent her back to the care home saying she was fine and it soon airbed out she couldn’t walk anymore and when presented with a prawn sandwich- her favourite, she didn’t know what to do with it.
She passed away the following Thursday. It was such a rapid decline but fortunately my brother and I were with her and were able to tell her how much we loved and appreciated all she’d done, and that my dad was waiting for her.

😭

I would ask about the syringe driver and make sure they know if she is struggling when they aren't there and seeming better when they are. Reiterate how hard it is to swallow tablets. The syringe driver definitely made a positive difference and was reassuring for my dad knowing he was getting constant pain relief. They also added midazolam as well to help with anxiety. Having the syringe driver also means someone needs to visit at least once a day to change it, so that might be why they are hesitating. Sadly there is such a staff shortage that we had to chase for absolutely everything from the initial diagnosis all the way through, which was doubly distressing. You are doing a wonderful thing advocating for her, and having you there will undoubtedly be making things easier for your Mum xx

Have a look at 'information on the 'actively dying phase' and familiarise yourself with the signs and sounds and what is 'normal'. It may make the transition a little more bearable for you if you know what to expect.

It's horrifying to have something like this strike your most loved ones out of the blue and cause such a rapid and agonising decline. It was like being in a living hell and I was so exhausted i didn't know how I could carry on. But I did, and you will too. xxx

No words of wisdom but just wanted you to know I am sending my thoughts and love to you tonight. Xxx

Lots of love to you, it is never easy. Thinking of you today.

Hope you're doing ok x

Very kind to ask.

We're trying to be there on shifts, and managing the pain, the cough that's just started.
Very good at Luke's, district nurses, carers all keeping everyone informed.
Increases seemingly each day to end of life meds.

D8stressing to hear. I don't know if she's partially awake or drug haze.
Moaning etc, words that aren't clear.

So terrified she's trying to communicate through the drugs that are there to alleviate pain, and very upset she might think we're not answering back properly.

It's a catch 22. 😔 keeping someone comfortable is a heavy weight.
She's just hung on for so long.
The st Luke's said some people are very strong and resistant to meds.

She had stuff to calm her etc for weeks b4 during this and just never slept or rested.

Oh OP I feel for you so deeply. My mum is getting to that stage, so restless and agitated. It is so hard to know what to do. I keep thinking I am getting it all wrong. I have a bit of help now but feel so guilty and panicked all the time when I'm not with her.

The thought of what is to come...she has kept her struggle very private and I simply dread the aftermath and dealing with everyone and everything. I don't know if I can do it. Not without her.

Sending you so much love and a great big hug at such a bloody awful time x

I feel just the same my 'friend'

I'm very comforted to read your message and that you found a minute to read and reply.
I'm so sorry you're going through this with your beloved mum.

Sending you much love too.

Keep checking in here with me. It would be good xxxx

My FIL was diagnosed with grade 4 NHL two months ago. He's half way through six sessions of chemo but at 83 is struggling and was hospitalised this week with vomiting and dehydration.
He also has a large mass on his kidney. It doesn't look good at all.
I was also a district nurse for many years and remember many of my palliative patients nursed at home.
Best wishes to you for what lies ahead.

Sorry to hear this op the end can be so tough especially when you know what's coming you really do have all my sympathy we've been through it recently with a parent. Be prepared for it all to 'hit you' after she passes and you're not doing stuff proactively and have time to process

Just checking in to see how you are. I hope you are able to swap with someone now and then so that you get a rest xx