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

I'm sorry you and your Mum are going through this.

Does your GP know of the situation. When we got to the stage that we couldn't cope, DH called our GP who instantly said I've been waiting for you to call and set things in motion for carers, initially a couple of times a day.

It was tough for Mum, but she was so obviously deteriorating, she accepted it as she knew that it eased the burden on us.

I hope your gp can help, hopefully initially with district nurses. Have you had a social worker assigned to you?

so sorry that you’re going through this, it’s a painful time. Do you have siblings ?

My mum (76) passed away in 2020, she was fine in march/April (early lockdown), pottering in the garden etc. Felt unwell with a urine infection in may, which wouldn't shift. By end June she was definitely unwell and was admitted to hospital in mid July. Catastrophic cancer diagnosis, palliative care only. We also fought to get her home, which we did on 9th August, she passed away on the 16th.
My sister and my dd look back on that week often, it was stressful, awful but strangely precious, it brought us all together in a way that will bond us forever.
It was horrific to watch her fade so quickly. Sit with her, take all the help you're offered. Don't be surprised if she eventually slips away when you pop out for a few mins.
And you'll be utterly exhausted afterwards.
Hugs to you xx

So sorry you are both going through this.
GP is a good shout, mum’s was very proactive in arranging additional help, and step up drugs for the nurses to use as necessary.

I have read that MacMillan are helpful, but sadly they were pretty useless in our case. But our local Maggie’s support centre were good for the carers as well as the patient.

Watching your mum go through this may be the hardest thing you ever have to do, it has been in my case. I just tried to be there, hold her hand, do her hair if that’s what she wanted . 💐 for you both

Hiya yes all gp, carers and St Luke's involved. Should have mentioned
X

She won't accept she's dying or rather she's devastated and her mental health is bad anyway.

Sorry for your loss xxx

My Dad died from cancer in January this year and I'm still trying to put myself back together again the other side of it all. It's honestly shit, and nothing can make it easier or better - just take it hour by hour, don't plan anything or have any expectations, and try to make sure you're at least drinking well even if you can't eat.

I'm so sorry for what you're going through - my Dad was a very stoic and private man, who never gave anything away about how he was feeling so seeing him weeping and begging for the pain to stop was just awful. I still feel exhausted and I don't think I realised at the time how much it was taking out of me having to be his support and his care advocate.

Top tips given to me were a) remember to breathe b) focus on the present not the future c) take it one step at I time. Mumsnet people were so kind to me as my sister was dying - that really helped me because i felt I had backup. Thinking of you x

Thankyou Mumsnet people.
I've been here for 20 years and I've seen the amazing support so many have given over the years.

It's really needed now.

Xxx

I'm so sorry. I lost my dad in February this year.

He had a terminal diagnosis and palliative care. He did not accept that he was dying and we were not allowed to talk about it or what he wanted for his funeral. He did insist he wanted to die at home and did sign DNR etc.

it was so hard at the end and the last week my sisters and I were doing 3 hr shifts with one awake, one on standby and one sleeping to help manage his agitation.

Accept all the support you have available to you. I hope your mum finds peace.

My mum is dying. It all came on so suddenly over the last few weeks and it all just seems so crazy. There are so many things to worry about. Thank you for posting, what you said is everything about now for me too. I'm so sorry for all this x

I'm so sorry 😔

Share my thread. I'm not able to post much at the moment but very much appreciate those who have and have shared with me.

I have run out of words all the shock and grief of the last 3 months have been whirring around. Dealing with it all. The practical, the lack of info.

Tip toeing about, the whole thing.
I don't want to identify myself by going into details.

It's Non Hodgkin's lymphoma high grade. She has other long term health probs.
COVID in hospital twice.

All fucking miserable and lonely.

All my health problems on top.

Now it's the waiting stage that leads to the end.

Xxx

🙏 xxxx

@Knackeredhamster 💐 It's very hard. But you have her home and you're with her. That's everything.

Touching on pp questions.

Yes have sibling nearby and mum has a partner.

I'm single mum.

I think I need someone to talk to for me tho at some stage. I'm holding everyone together.

Maybe St Luke's. I only realised I could do with a rant when one carer asked me how I was the other day and the poor woman probably wishes she'd not enquired x

I'm so sorry. I don't have any practical advice other than to keep on at the doctors for pain management. There shouldn't be any reason for your mum to be in pain.

I'll be keeping you both in my prayers.

I know how utterly isolating and emotionally exhausting this time is. Much empathy @Knackeredhamster. I am not in UK but Aus. (Great if you can’t sleep and need a voice in the dark. I’ll be up!) Is St Luke’s her palliative care team? Is home really the best place for her? (Pain and stress is generally managed better in hospice than at home over here.) She would always have trained, qualified people around her to listen and assess what is required in the moment. Are you and your siblings all sharing the load and with her partner? This is a time when pulling together can be enormously helpful, but more often than not, stress gets the best of people and you can pull in different directions. Having a contact book with daily tasks that have been done and need to be done along with observations about your mum’s mood/pain/food and water intake can be helpful for nursing staff and family members to keep track of everything and to avoid stressful communication.

For now her home is important. She spent nearly 3 months in 2 hospitals.
Isolation due to 2 bouts of covid. Care in those was patchy and well quite cruel at times. Got Pals involved.

She's not in any pain yet, so whilst this is so her emotional health and familiar surroundings is the least we can do or try for now.

Her mental health has deteriorated so much that getting her home was priority.

We will assess this.
St Luke's on board and everything.

Xx

Agree with communication. We're all pretty close, not many of us but from day one are in contact all the time about meds, care, thoughts etc.

All carers, district nurse, local GP very accessible. This is the beauty of having her home. There are no times now where we don't know what's going on with her care.

She's v v distressed. We have meds to help.

Thankyou xxx

My Dad was in a hospice, and the staff there pushed me very firmly towards their support team. I saw a counsellor while he was there, and carried on doing so for about 3 months after he died.

It was invaluable. I could say things to them that I didn't feel I could to anyone else. Try and reach out - this is a hell of a burden to carry.

Also, my Dad was horribly agitated toward the end, and the meds never eased it. Even when he went onto a syringe driver.

His last few days weren't the peaceful sitting around the bed that you see on TV. I hope it is for your Mum, but just be prepared that it may not be.

I'm sorry 😔

It's scary isn't it. Xx

Thankyou

And to all posting. X

Hello, sorry you are going through this. End of life can involve a lot of agitation, the person may lash out at you. Try not to take it personally. You are doing a wonderful thing being there at this final stage.
the most important thing is comfort. If your mum is in pain then she needs to be on a syringe driver with morphine, the hospice or district nursing care team can arrange this. My parent was also given a sedative to ease some of the agitation.
hold hands, tell her you love and that you’re there, say all the things you want to say.
it’s very tough on you, you can get counselling either now or afterwards. I never did though I have spoken to friends about it.
it’s normal for them to stop eating and drinking at some point. District nursing team will be able to help with offering mouth care to keep her comfortable.
Just know that you being there is enough

Big hugs to you OP. It's so hard to process this was me a year ago I felt I should be with my mum all the time she had left as I knew it wasn't long but equally it was much harder and so tiring. Long walks in morning really helped me, I just tried to focus on the fresh air, the flowers and trees which are so beautiful and temporal. Those walks let me face the day and feel stronger.

DF passed away from Non Hodgkins Lymphoma 11 years ago. DM currently in hospital receiving palliative care for stage four lung cancer. I have a very demanding full time job, a six year old and live 300 miles away. I am mentally exhausted by it all and feel like I'm waiting on the edge of a cliff for someone to push me off. My full and absolute sympathies are with you.