End of life cancer diagnosis for elderly parent

That's some lovely advice, I do love hearing about his stories as a child and the history he has lived through, he has had a lot of life experience over time! And it will be good to chat about something other than the other questions he's getting like, what are you eating, how are you feeling? It will be good for him too hopefully.

Don't forget if there's anything you want to ask him, ask it now, I don't mean anything mega, but the little things, like what did he do at xmas when he was a child and bits and bobs of family history. So many people wish they'd taken the time to ask these sorts of questions before it too late.

Thanks Number, I appreciate your time. I shall take this on board. It is definitely all about my dad at the moment, I want to know as much as possible to then let him guide how he wants his end of life to play out. I shall think about the next bits as the process ensues!

Dear Casyyellow.....I thank you for your response.  That is deeply appreciated.

I am a VERY guarded soul, and choose to share VERY little here....but I do (always) feel a compulsion to help my fellow travellers through life, when/if/when I can.......most especially us autistic types!!

Based on your response, I think I can offer just one more morsel of advice to you......."Everything, in good time, my good friend."  Bide your time.  Right now, it should and MUST be about a) your dad......then b) "the group experience"......then c)....when things have come to pass, you can [VERY CAREFULLY] explore what comes next.

Your response is GREATLY appreciated.  Thank you......I am grateful for reassurance.

Number.

Thank you, there is some very logical helpful advice there. I don't think I was prepared for some people's reactions - not just about my dad's prognosis, but the reactions to my behaviour and questions. Your words, and everyone who has replied here, have been really helpful in navigating this situation. I was questioning my behaviour and shutting down a bit. I'm feeling less like I've done something wrong!

There are no rules, for this sort of situation.  Anyone who tells you otherwise is lacking the experience (in my opinion.)

There are, however, some basic principles that I think are sound.  The most important of these (in my opinion) can be summarised thus;

"It is a 'group experience' with the dying person's interests trumping all others, so for God's sake, don't allow one's own interests take centre stage."

I commend you for not unleashing your A-word on the group, at this time.  I think that is compassionate of you.  I think others in your group perhaps don't have the bandwidth to extend you compassion and understanding at this time.  That is a pity, but I trust you probably can muster the stre gth you need.

I wish you well at this tricky time.....I've been there.

Tomorrow is another day.

With kindest regards

Number.

Thank you. I really appreciate that!

If all those piled up emotions finally get to you, you’ve just got yourself a whole bunch of people to speak to. Even if it’s just about putting into words what feels overwhelming and hard to grasp.

That's so true. It's exhausting trying to put the correct mask on. I've been trying not to mask as much so I can just be myself and and feel happier in myself, accept myself. It's a bumpy road when some people take you the wrong way, I shall keep at it!

Thank you, I appreciate your offer

Thank you for sharing your experience, that does sound hard, especially at the young age you were. Everyone sharing their experience is actually very helpful here. I feel I may be going through a similar process in the sense I want all the facts to know what is going on and also be able to understand how he can be the most comfortable at the end. I think I'll have more of a delayed reaction to the emotional element of this process. And don't worry, I don't think you are saying 'I know what you are going through', I appreciate your honesty in your personal experience.

Hi I am really sorry to hear about your dad sorry I can’t offer you any advice but I can offer you my condolences. I lost my mum a few years ago it was very sudden and unexpected she had open heart surgery and didn’t survive. If you ever need someone to talk to drop me a private message my thoughts are with you. 

I'm so glad you've got the help you need, everyone deals with approaching death differently and thats OK. I get how confusing it is when you don't know how to behave, I get that so often, it's like I'm desperately putting different mask on and off trying to find the right one and none of them are right.

Hi!

Let me just say in advance: I’m very sorry you have to deal with all of that on top of an already difficult and upsetting situation.

A few years ago, my father got diagnosed with cancer and it turned out that his tumour was pretty advanced. For a few weeks we were left with the prognosis that the tumour had very likely already spread. When the operations were done and the lab results came, it became clear that this was luckily not the case. During the uncertain weeks my little sister was sometimes crying and constantly searching physical contact to my parents. I withdrew quite a bit to research about my father’s condition, his chances of survival in different scenarios, possible treatments and so on. I often asked “blunt” questions like “Does it look like papa is going to die?” and wanted to know every detail. The people around me were much more tolerant since I was only 15 at the time. But I got in trouble with my parents since my father obviously didn’t like thinking about it like that and because I upset my sister with this kind of language. 
Sometimes people forget that everyone reacts differently to such devastating news. Some get emotional, some start projects in a sudden burst of left over energy and some just need to know every detail. You have the right to ask those questions and if not in the group chat then you should be referred to one person in particular that answers you. It is understandable to want information, especially with so much physical distance between you and your father.

Oh, and one last thing. For me, all of those emotions I wasn’t able to identify or process at all for a long time came crushing down at some point. At the time, I felt ashamed because it was already clear that my father is most probably going to be fine under treatment and I felt like I should be able to deal with that after not having a problem for most of the time when all of the others were in a state of shock. It was only after he had to go to the hospital for suspected myocarditis that I suddenly and unexpectedly broke down in front of a classmate and finally talked a bit about everything that had happened. Don’t ever feel ashamed. I understand that your situation is far more difficult and I wish you all the best!

(I hope this didn’t sound like the “I know what you’re going through”-phrase, because I obviously don’t.)

Thank you, I think my dad is in the early stages of processing what is happening but he did broach with me that it is the end so I'm hoping he can continue to talk openly to me. My younger sister has been good to talk to today, I think it is as you say, there are multiple family members and they all process things differently. I think I tend to get the rebuttal as I 'over share' in their opinion. 

When my Grandad was nearing the end of his life he agreed to a DNACPR form and it caused a real rift. Some family members were too upset to accept it, some were supportive of his wishes but still upset (and trying to hide it) when he talked about it . He really appreciated that he could talk to me openly about it (I work in a hospital in a clinical role and he was frail with multiple illnesses) People do deal with this sort of thing very differently, especially if it is sudden/surprise diagnosis/prognosis. Some people will bury their heads about it but others will need facts and discussion to help understand what is going on (like yourself) and those two ways of dealing do usually clash unfortunately. Have you tried reaching out to just one person to get the details or ask questions? Maybe you could privately message your Dad and ask if he wants to talk about it if you haven’t already? 

Thank you for replying, I can talk to one of my sister's about it thankfully. And the Macmillan helpline phoned me back and were amazing. They answered all my questions and said it's good to talk about the facts as it helps everyone process the grief. I get lost sometimes with how I'm supposed to behave and confused about what I'm supposed to do or say. I would prefer to talk about all the facts but my extended family don't, they like to bury their heads. This has helped!

Its really dificult, I'm lucky that my Dad was always very open about death and dying, so we were able to talk about a lot of stuff. I've often found that people who have had a terminal diagnosis are quite glad that theres somebody who's not afraid of the subject and can talk it about normally.

Who's saying that you're saying th wrong things and who are you upsetting? Why are their needs greater than yours? Is there someone in the family who you could talk to one to one?