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

Hey my dad is currently very poorly in hospital stage 4 cancer origin unknown as it is everywhere. He isn’t very verbal and I don’t know if it is because he is tired or because of the illness or what. I don’t know how long this is going to go on. Nobody is saying anything, info is drip fed. I have so many mixed emotions. Part of me wants to know everything, part of me wants to bury my head in the sand. I have feelings that I feel guilty to feel. I know what this road looks like and I don’t want to do it. I also live far away so can’t be there everyday so feel bad about it but the back and forth is so tiring.

@disappointed sorry you're facing this. Its hard when you're not close enough geographically to be present for appointments. Previous relatives illness.... I found I could tell the ward staff I wanted to speak to the Dr and they made a time for us to talk on the phone even when I couldn't get here.

I think with cancer they struggle to give a prognosis because it can change so quickly. Sisters prognosis was 5 years.... a year ago.. I wonder if Christmas is ambitious right now. Treatment has been cancelled for so many reasons and it's just been relentless.

I started the thread because so many close relatives feel helpless and on the periphery but also at the epicentre ....trying to support and look after everyone. The dynamics in my situation mean that her husband isn't helping her because she's too concerned for him and is protecting him.

Oh gosh you seem like you are in such a difficult position. My mum is also telling me to never give up hope 🙄 They aren’t together but her comments aren’t helpful. There is only one way this is going. It must be hard for you to know what to do. You are either going along with your sister or potentially really upsetting others. Maybe her husband is in denial and doesn’t want to face it yet? I’m sorry you have had to experience this multiple times. How are you coping with it all? X

Oddly it's not as awful as you'd expect. It feels familiar but different. I recognise some of the things like anticipatory grief, I feel like the last few weeks might be similar and perhaps not so traumatic (think I'm kidding myself tbh). He is totally in denial and I think she's exhausted by helping him.

That’s so difficult :( it’s such an emotional rollercoaster isn’t it? Part of me wishes I could turn back time, part of me wants it to be over

Totally get the wanting it to be over. Its like torture

How are things at the moment? I’m still just taking each day as it comes. I can’t think beyond a few days at the moment

Calmish. Pleural fluid is accumulating a bit quicker than anyone could want. Indwelling drain will be emptied several times each week now. She seems very accepting and family seem to be slowly recognising what is going on.

It's just odd to sit and watch the Traitors and not be screaming and raging at the unfairness of cancer. Life as normal but not normal and you know the future is frightening.

Have you managed to get any more news?

unbelievably, I’ve lost two beloved sisters
to cancer in the last 3 years , aged 57 & 55.
My only advice is to meet their mood, sometimes they need a giggle. I would also highly recommend a Hospice. My sister passed in hospital with no palliative nurse on duty and it was utterly horrific. The sounds will never leave me. I’m sorry for the sadness you’re experiencing, sending love.

My mother did not want any of her family including my Dad of her terminal cancer diagnosis. She asked doctors not to tell us which was frustrating as Myself and my sister are nurses and knew she didn’t have long.I feel it was her way of dealing with the awful situation but it made things more difficult. We didn’t know her wishes about her funeral etc.

My sister passed away 5 weeks ago in a hospital in the Far East, where she had lived for 35+ years. Cancer was diagnosed in January, previously the consultants had said it was bronchitis. It had spread to several parts of her body and everything hurt. Myself and one other family member was with her when she died, our siblings had visited but returned to the UK/Europe. It was up to me to decide when the treatment should be stopped as per her wishes, which was the most difficult thing I’ve ever had to do. The culture in her country was to not give bad news, always be positive. This led to us being told she could have 3-6 months, when it was obvious she only had weeks/days left. She refused to accept that it was terminal until the very end. She changed her wishes re the funeral etc at the last minute, so her funeral was held 2 days after her death and I flew home with her ashes. I still can’t believe my big sister’s not still there on the island where she spent so many happy years. Because of a big age gap, we had never been especially close, but we had a few intimate moments in her last days (you read about sudden lucid moments and they really did happen) and I’ll always treasure those.

@Trufflepizza I'm so so sorry to read about two sisters. Have they advised any sort of screening for you? I had a very bad experience with hospice at home with one family member. They just failed to attend. It was really traumatic

@Suzylola22 did she realise you knew? Were you able to talk about it with her? Did you feel this is absolutely what she wanted or was she just struggling to start the conversation

@whattodoforthebest2 when my Dad died I had a real comfort from some last words of his. Its stayed with me ....he actually wrote them but I can hear him saying them.

I think my mum did know we knew but just couldn’t face it. She wanted to protect us and we her. She also was offered hospice care but remained in hospital which was her choice but it could have been better for her.
Nothing prepares you for losing someone close but the circumstances of their illness and death stay with you

12 weeks prognosis. Hopefully moving to another setting than the hospital. I seem to be not reacting at all to anything. I think I’m in denial or I don’t know what is going on. I’m usually very emotional as a person. Sorry to hear other people’s experiences . This all feels so surreal

@Suzylola22 totally agree about circumstances staying with you. I really wish there was similar planning for death as birth. We should all think about where (home, hospice, hospital) and how much intervention we want. Just like birth things do not go to plan but at least you've got an idea over what matters to aim for.

@disappointed101 surreal is an apt description. It's like it isn't really happening and then something triggers the 'it's happening' realisation and I want to howl

Hugs to you Artichokes.

How are things for you @artichokesbloom?Sorry to hear of your hospice at home experience. Wild to read how sometimes even death can’t be expected to happen in a calm and peaceful way.
To answer your question, my elder sister had Choangliocarcinoma/bile duct cancer so no requirement for me to be in a programme but my other sister had triple negative breast cancer and I’ve been with the family history clinic and annua Mammos since. Cancer feels rampant these days. Sending love to you

Well in an odd way things are better. Everyone is in the picture now and this seems much easier. I think they knew anyway and were acting which was much more painful than being able to talk. The talk is calm and almost black humour which I think is easier for her. She's feeling better and yet....its still there. But we are in a good place right now. Tomorrow who knows!!

How are things for everyone else?

That’s good to hear things are better Artichoke. Dad has been moved out of the hospital into a nursing home. Much better location. Though now we have been told 6 weeks not 12. Cancer is such an awful disease. He was witty today which was good to see.

Lovely to have some good moments in those last few weeks.

Hi, can I join even though we are facing a different diagnosis? My SIL has Progressive Bulbar Palsy. She's been in hospital for about 4 weeks now and we only got the definitive diagnosis a week ago. It seems pretty advanced, she has already lost most of her speech and is struggling with swallowing.

We are looking at weeks or months rather than years we think. My brother shut himself off for a few days after the diagnosis, we were worried how he would cope, but he seems to have worked through his grief and come to calm acceptance.

We are also hoping for a move to a setting rather than her staying in hospital (which she hates) as she would also be able to have some day or weekend time to get out and about or even go home.

Surreal is definitely the word for how I feel, I don't really have anyone IRL that I can discuss my own feelings with, and I don't want to burden my siblings are they too are trying to process their own grief.

I just can't come to terms that this bright, bubbly, fun woman that has been in my life for 35 years is now a shuffling old lady with no hope of recovery. She's 57 but looks 80+

Sorry for the ramble. I visited yesterday as she can't talk on the phone or even message any more, and I'm still trying to come to terms with what I saw and heard.

Surreal is a good description. I'm in the "it's not happening" hole in the sand phase and it's quite a cozy place.

Your situation sounds very shocking and hard to accept. I had heard of this condition. Am I right in thinking it's similar to motor neurone but much faster :(

It's a form of MND. Seems MND is more of an umbrella term than a specific illness in itself (I have learned a lot in the last few weeks).

It's really shocking how quickly it has taken hold and how bleak the prognosis is. There is literally nothing we can do except watch her deteriorate and eventually die. No cure, some of the symptoms can be treated to make her more comfortable (she was permanently drooling when she first went in, that's now a lot better).

I am so sad, but angry and also helpless at the same time. I am one of life's fixers - I solve problems, I help people, it's what I do. And the best I can do now is plaster a smile on to go and visit and keep her cheerful for a short while.

I want to rage and scream at the unfairness of it all.

Duplicate post

All of that resonates. I started the thread because I want to help but feel powerless in so many ways. I'm so so sad but also know my feelings should be buried as other's are far more important.

We had one week when it was suddenly much worse and now we seem to have a reprieve and things are more settled. I'm going with settled to direct my emotions