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

Are you getting enough support. Once we refused for mum to be taken to hospital the GP was informed and put everything in motion including an End of Life package of drugs. We had the district nurses and GP surgery on speed dial if pain medication was needed and we were also supported by the palliative care team from the hospice. Once mum was end of life we no longer had to pay for carers and one of them stayed with her at night so we could get some sleep. Near the very end a palliative care nurse did the night shift. DD and I shared the load and went for walks when the other was at the bedside. The hospice offered us counselling after mum died. Can I just say that she never needed pain meds and her last days were very peaceful. All the family came to visit the day before she died along with an old friend. DD and I just sat and held her hands when we knew the end had come. It was a hard time but it made my DD and myself even closer and we know we did the right thing. As an end note, if you don’t want to be taken to hospital or are DNR you need to fill in a form at the GP and have it posted up on your kitchen wall or have the person with your PoA there, otherwise the paramedics will load you into an ambulance but you do need to have a hospital bed!

Yes we have all the paperwork and meds you mentioned xxx

Sorry for your loss and thankyou for posting.

Got to go soon xx

Thanks all.

@Knackeredhamster i’m sorry about your dad too. My mum went similarly and it was very traumatic for everyone.

What a helpful thread. Hearing from everyone taking the time to share their honest feelings and experiences is so comforting. My mum is going into a hospice soon.

Thinking of you OP, thank you so much for your empathy. I keep telling myself this level of awful shit on a daily basis won't last forever. Hang on to that and get all the help you can. I bet you're a great daughter and mum xx

In similar boat here. My DM, late 70's, bowel cancer, palliative care at this stage. She's in a hospital 250 miles away. My DF lives another 100miles away past the hospital while my brothers and I live on the opposite side of the country. I am with her twice a week and my dad too. I am always in the car or on a train (currently on train).

I work a busy job and have 3 small children. I feel like I am living some kind of hell tbh. The only time I feel relaxed is when I am with my DM. She is failing fast and I just want to be with her while I can.

My manager at work agreed for me to have 1-2 days p/wk compassionate leave but will review in 4 week intervals to make sure it "makes business sense". The workload hasn't reduced at all so I'm only really taking half a day compassionate leave a week at this stage. Manager also decided, in the same conversation, to let me know that "once this is all settled [sic my mum's situ] - we are putting you on a performance improvement plan". It was a massive shock and so unprofessional to deliver the news like he did. I had a great end of yr review so it was really unexpected, but I know they are tightening their budgets and it seems I am being tagged as 1st out the door. It has put a huge strain on me on top of everything with my DM. I feel there's another axe waiting for me once this horrible situ with my DM is over.

Anyways - apols I didn't mean to only go on about work but just needed to vent. Literally nobody understands how hard life is at the moment. x

I understand.

It's very very very hard. All of it. Xx

Thankyou dear person xxx

St Luke's are helping now.

Xx

Are you in Sheffield? If the St Lukes you are talking about is the Sheffield one, they are the best place for your mum to be. They are so caring & will not only care for your mum, they will care for you both while your mum is still with you but also afterwards they will give you a place to talk & support you while you are grieving. St Lukes is a lovely place, make use of the beautiful grounds if you need a break to breathe & gather your strength to support your mum. If you are using St Lukes at home, they were brilliant with my ex fil they came whenever they were needed & made sure he wasn't in pain & gave his family drugs they could give him to keep him pain free if needed.

Hi no we're in the south.
We do have a lovely hospice should we need.

I'm pleased you got that care and surroundings.

Xx

Thinking of you, how are you managing?

Sending best wishes. My mum aged 76 has just been diagnosed with pancreatic cancer. Waiting to hear if she can get the whipple procedure but aware it's a pretty shitty prognosis.

Thankyou it means a great deal. Especially to know so many have been thru it and still post in support.

We're all wading thru shit it feels like.
Just one hour at a time.

She's getting but still here. Still talking and with it.

There are so many other life changing things going on around us, not life limiting things but things that even in ordinary times are classed as those 'most stressful things you can go thru'

There are only a handful of us family wise and I think we're getting all the 'things' in one go.

She's not in pain. But she's unable to do anything for herself.
I'm learning how to help. I'm glad I am able to help tho it's desperately sad having to do some things for her.

Xx

Sending back your good wishes

🙏 XXX

It's hard but cherish this time to say goodbye and remember the best times together. I'm sure that you are doing a wonderful job

I am so sorry to read your news. I lost my Mum last November to NHL, she had it for 10 years and fought stubbornly every single step of the way. Has your Mum got a DNR in place, does she have a will and do you know her end of life wishes, horrible stuff to talk about but incredibly important. My Mums DNR had been removed by her oncologist with her agreement after a huge gastric bleed 5 years into her diagnosis which she was not expected to survive but did. In the end she was very unwell and we had to call the paramedics who said that as no DNR they would need to resuscitate and I had to advocate for her when it became obvious that they would never get her to hospital. In the end she died quite suddenly but peacefully at home with my Dad and me holding her hand. I am so very sorry that you are going through this, tell her that you love her, be honest with her and try and get end of life medication in place so that she is kept comfortable. Make sure that you have support in place too. Sending my very best wishes at such a difficult time.

Yes all those things you mentioned are sorted thankyou.

Xxx

Take care

You poor thing it is so so hard. I would say express your love for your mum as much as you can and share how much you appreciate all she did for you. I told my mum to think she was going on a journey and that seemed to help her to be a little less scared but it is so very hard to see your mum you love so much suffering and you just want to stop it for them.

Thinking about you and sending hugs. xx

Thinking of you hamster. Take care of yourself

You're all lovely. So kind

Thankyou.

I can't really get my head around how this is taking so long. That sounds harsh but 6 weeks ago they said she had a week left.

But of course I think there's a peace there surrounding her somehow and all those awful days and nights in hospital are long gone for her.

She's still very much mentally with us.
This is a blessing I'm thinking 🤔
Yet on the flip side it's time marking and it's desperately sad too.

All her meds were stopped weeks ago. Many meds. Heart etc.

She's strong xxx

My mum died last month from pancreatic cancer. She fought for two years and was doing okay until a really sudden downturn, then a scan showed tumours on her Whipple site, liver and spine. The last few days were a constant vigil with my siblings, watching her decline. She did receive a good amount of care offered (up to 4 visits a day) but we tried to do as much as we could ourselves.
The end of life stage can be horrendous. I really feel for you. But at least you have this time for remembering together, asking questions that you never got round too and knowing what her wishes are.
Also please make sure you take some time out for you, don't get completely run into the ground xxx

Beautifully put. Make her transition as peaceful as possible. Fill the house with love.

@Knackeredhamster and everyone, sorry you're going through this. Everyone's experience is different so I'm not going to say I know how it is. I lost my mum nearly 7 years ago but some of you from what you say are experiencing it in a tougher way.

Be kind to yourselves, accept help and support on offer now and beyond. I hope you have people who know that you won't magically get over it just like that straight away either, and that if you don't have enough such people IRL maybe you can get support/support others here.

I have little relevant practical advice - I’ve been through it once but I guess each end of journey is unique, except for the need for you to communicate very clearly what you need to carers, nurses and drs, not just for your mum but for you too. I really hope for some peace for you all. Wishing you all the best.