Supporting someone you love who is dying

[ArtichokesBloom]

Have I missed a running thread for this? (It's not my partner so not allowed on the Storm threads)
I've supported two close family who both died (cancer and dementia) and now a third is stage 4 cancer, treatment not working. It's slightly easier in some ways as I've done this before but I still have the same nagging in my head that I can't get to stop. Mostly my questions are around stuff I feel I have no right to think or ask. It would be nice to speak to others experiencing the same rollercoaster of tests, treatments, setbacks, good care, black holes of despair care, family dysfunction and say the stuff I want to. She seems 'quite well' but that's fairly relative. Liver, lung and bone mets. Pleural effusion which needs draining (again). She's asked to stop treatment. She seems upbeat but I think has a mask for the sake of immediate family who are not coping. She isn't correcting her DH who is telling everyone her treatment is going well and will keep her alive for another 5-10 years. I'm torn between thinking It's OK for us all to pretend she's not seriously ill and won't it be a massive shock if she's dead in 3 months....and then it's not up to me to have any thoughts or voice them anyway......but then I go straight back into worrying that I'm watching a car crash. I'm not going to interfere (please don't anyone pounce on that) but I'm just voicing my middle of the night worries. I will be picking up the pieces of the family when she's gone. I know she wants her family to be OK and is terrified by the way they are avoiding it but also exhausted by the idea of having to babysit them as they work through their grief whilst she faces her own. I just want to help them all.

I have a hundred other questions. Let's see if this is something others would feel able to share

I think that's all you can do. Bow with the wind if you like. Take your cue from the patient and those closest to them.

The logical side of me keeps reminding me we are all going to die at some point.

My frightened inner child just wants to scream "but not like THIS!!" while I try to be the strong one for my devastated DB and my frail, fragile SIL.

Life is precious, but also unutterably cruel sometimes 😔

I speak to older people who say they are at peace with dying and I can imagine getting there. Some days when bits of my body are ceasing to work properly and the world news is dire I feel OK about walking away. But "walking away" is a rubbish untruth. I feel like my relative is being torn away. Are you ever ready to say goodbye to family?

No I don’t think we are ready to say goodbye. I keep wishing I could go back to my childhood and relive those moments.
My father passed away at the weekend. He was peaceful but this has got to be the worst experience of my life

So sorry @disappointed101 x

Hi OP, sorry for all you have been through and are still enduring.
My lovely sister died last year at 32 from cancer. We had 10 weeks from diagnosis until the end. My sister had been hiding symptoms from us until it was too late.(she had terrible health anxiety). As a family, we knew there was no hope when she was diagnosed, it was stage 4b and organs were failing. We just couldn't talk about it, my sister didn't talk about it. She only saw me cry a couple of times. We were all blindsided by the shock, we froze I think. We felt like we couldn't fall apart for her. I was in a daze until very recently

Oh @Rosieposy89 that is so awful. So shocking and fast. Very similar speed to @disappointed101 Dad. Nothing about cancer is bearable. Fast is brutal. Slow is torture with inevitable loss

@disappointed101 I've been thinking of you. Words feel so inadequate, I hope you are getting some support from people around you

@Rosieposy89 wow that is shocking, I’m so sorry. The daze resonates with me. I totally feel I am in denial.
@ArtichokesBloom thank you for your kind words. I have lots of support thankfully but I’m definitely blocking things out as a coping mechanism. How is your family member?

It's been 9 years since my mum died and 18 since my dad but sometimes the wave comes back and hits. Reading these I don't have any advice but ride it. Advocate for your loved ones and be the difficult one when you need to. Cry in the car. People just don't notice. Sending love to all. X

@disappointed101 rollercoaster is on the up...she seems well and a bit better and yet we know she's advanced and the smallest thing could change and be serious. It feels like cognitive dissonance.

@Freesiapleaser thank you. X

I'll sadly join you. My sister is dying of cancer. She is 40 with 2 young children. Cancer of unknown primary. She said she doesn't want to know how long she has left. She's in a lot of pain and is very thin and frail. They are attempting chemo to see if it slows it down but she hasn't started it yet.

@Cricketashes that is devastating news. I found the time between discovery and treatment made me feel hysterical/panic stricken/furious with the world and helpless. It was a similar time of year I found out about another family member and every Christmas song made me want to scream

Hi all. Just 3 short weeks after joining and my lovely SIL breathed her last yesterday. She was in my brother's arms, listening to her favourite song and it was quick and peaceful.

Thank you to everyone who commented.

I hope your journeys to the end are as smooth as they can be.

My thoughts and good wishes are with you all.

@HollywoodTease that is shockingly quick. You must all be stunned and bewildered by the speed. I'm so sorry. I hope you can recall memories which remind you of much happier moments with her

Hello can I join the thread no one wants to be part of. My amazing little sister has secondary tumours in her liver and cancer of an unknown primary source. We are all in bits.

I'd love to know how best to support her and be the best big sister I can be. I'm shocked right now but I need to get my big girl pants on deal with it and look after our Mum and my sister. All help and advice gratefully received xxx

im sadly joining too. I am supporting my wonderful father. Most if the time I just want to fall down, cry and never get up. But I have to be there for him, and my kids and Mum

Joining the saddest thread I never wanted to read- also have a sibling in their 30s with stage 4 cancer & feeling utterly bereft and terrified. Am spending most evenings on the Macmillan helpline and onto the Samaritans most nights at 3am. Trying to stay strong for my children and for work but frankly I just want to disappear . It’s the loneliest, cruellest of times. Sending love to all who feel like this. You are not alone x

I am also joining in here.
OH has a common variable immune disorder that has now led to granulomus lymphatic interstitial lung disease, pulmonary fibrosis, pericarditis and multiple other issues like chronic tiredness, permanently upset stomach, rosacea and eczema. Huge issues with viruses 'knocking them for six' - has just had covid for the 6th time and instead of intensive care as before, it is 'only' 8 weeks of huge dizzyness so far...
Has retired early from work last year under ill health and takes a line of drugs each day. Each month seems to show an increasing slowdown in abilities. OH has gone from keen cyclist (100km days) and hillwalker (multiple Munros) to struggling to walk at any pace or distance without a break on the flat in the space of two years. While we still get out, ebike or walking 10k on the flat is now the limit, with stops and a week to recover between.
Because of the multiple inter-plating illnesses no one will be drawn on the outlook and timescale, but we know that things like GLILD come with some very scary terminal prognosis on their own.
New consultant has made it clear that we need to prepare life for the worst and 'get your affairs in order', but without any timescale due to the complexity. I have three times had to phone father in law and tell them to come as OH may not make it through the night in intensive care.
I am really not sure what the road holds for us, just know I am trying to earn to keep roof over our head, support (adult) kids as they find their way in the world, and support OH who is having a far worse time than me.
It is hard to keep fighting when you cannot even imagine what the future holds or even make any plans.

I wanted to ask if anyone on this thread is managing to work? I have found work a blessed relief so far as it is so distracting but as my loved one’s disease becomes more and more pitiless I am struggling to keep it together. Has anybody been signed off?

sending love to all coping with this tonight. I see your pain and share your sorrow x

I am taking three weeks off. I have been working three days a week, but between juggling my two young children, husband, and my Mum and Dad, it has all been too much. Two of the weeks will be school holidays, but I’m grateful for not having to juggle work on top of it. I’m already worried about how I’ll go back to work if my Dad is more poorly. I’ll try to reduce some hours I think.
in short, please cut back, take leave, whatever you need to do

And I feel very lonely too. No one around me seems to get it. Text messages etc seem useless and pointless; it doesn’t help with the depth of the grief that I feel

we are here if you want to talk

does your sibling live close by? How are they mentally and physically?

Hi @Blueskies3 thank you for reaching out. I am glad you are able to take 3 weeks off.i know what you mean about text messages not really hitting the mark. What I want more than anything is a hug, not texts! My children are (angry) teens and barely affectionate. I hope yours are still little
emough to sit on your knee so you can smell their hair and kiss their cheeks.

my sibling is 3 hours away from me and has been so very poorly but i hope to see them over the easter weekend. I am taking a week off work in the second week of the Easter holidays but could do with longer….

Sanding love to you and all other in our position tonight x

I work. It can be a useful distraction. I happen to work for a wonderful charitable employer and it feels good to do the amazing work we do.
But realistically, I am at work because it keeps a roof over our heads and food on the table and I cannot afford to not work.
How this will play out as things progress, I do not know and worry about not being able to give both my OH and work the attention they deserve.