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How to help my family cope with my death

Christina58
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I have stage 4 bowel cancer. I probably still have a year to two years to live because it hasn't progressed yet to other major organs. The primary tumour was removed but it had already spread to lymph nodes that can't be removed so it will get me in the end, just a question of where and when :)

I was diagnosed almost a year ago, a couple of weeks before Christmas. It's been a difficult year for me personally but I am coming to terms with my own life and death and I hope to face up to it all with grace and dignity. I've had a good lifeand I'm grateful for everything I've experienced.

The thing that is breaking my heart though and haunts me daily is knowing how this is going to affect my husband, Mum, sister, grown up children. I know how I would feel if this had happened to one of them. In many ways it's going to be so much harder for them because my eventual death will just compound the grief they're probably already feeling now. At least for me, it all ends when I die. I only have to find a way to make the most of the time I have, and I don't have to worry about what comes after, from my own perspective.

But my family............ It seems so unfair that an illness that I am suffering from is going to have such a profound effect on the people I love the most and there's nothing I can do to ease it for them when the time comes.

I've read quite a few posts on here from close relatives of people who are coping with a terminal diagnosis and I can identify so much with the sadness and pain they're feeling. Even though I know it's not my fault, I feel responsible for what my family are going through and will go through.

Is there ANYTHING that I can do now, while I'm still here, that will help them to cope afterwards? I don't mean physical things like memory boxes or letters (I'm working on those :)  )    In fact, I'm not sure WHAT I mean, really - I just feel so bad that this has to happen to them and wish I could do something to help.

I'm on the verge of tears all day every day and the silly thing is, it's not because of my own situation, it's because I can't bear what this is doing to my family. It's such a long drawn out process. I could still be here in two years time, waiting, and I'm stuck for ways to help my family get some kind of joy out of the next few months/years.   They don't see the way I feel inside, I'm always cheerful - and that's exactly what they're doing for me, bless their hearts.

I'm just really curious to know if anyone out there that's having to face up to losing a very close relative, has any thoughts on how they're coping that they would share, or anything they find helps them cope better or cheers them up. Or even if people have lost a close relative, anything they wish could have happened that might have eased their pain a bit?

  • Offline in reply to RachelH
    Hi Christina. My dad died last week from advanced bladder cancer. We've known for the past year that his cancer couldn't be cured, although we hoped his palliative treatment was going to work better than it actually did. It's all very raw at the moment, but maybe a good time to think about what we could have done better in the last year. I think what people have said about not trying to always be cheerful and to acknowledge how sad the situation is, is important. We had some really good times in our last year, but we also cried together too. Spending time together while you can and saying what you want to say is important. Practical stuff is important too. Make a list of all your passwords, it makes sorting things out much easier. You could plan the funeral for them if you can face it, or leave detailed instructions if not. We found trying to decide what to do quite hard, I was googling funeral directors in my dad's last days, which were ***. You could also think about end of life care, hospices versus being at home. And what help is out there for your family if you do decide to stay at home. We had support from community nurses and Marie Curie at the end, but it was definitely hard coping with my dad at home. I don't regret doing it, but if I were in his situation I am not sure I would be so adamant I wanted to stay at home. Most of all, I think just be there for each other and talk and laugh and cry and be alive while you are. I'm so sorry you and your family have to go through this. It is so very hard. x
  • Offline in reply to AmyPond

    I agree with everything Rachel has suggested.

    My dad is still in decline and in an hour or so the doctor is coming to discuss the next phase of his care, which we know will be a medicine driver, as he is no longer able to swallow any medication or even water without choking. 

    He is still very much with it when it comes to regonising people and cracks a smile when someone says something funny.  During the night times I have been sitting there with him he has apologised to me many times for failings he perceives to have as regards being a parent, bit odd as I can`t think of any so it has been a case of re-assuring hime that he has done a fine job and that finer parent would be hard to find.

    The hospice carers and the Marie Curie nurses and night sitters have been a God send and I would recommend anyone who is in the position of having to look after a dyeing relative to accept all the help they can offer.  I am not unfit and have no medical problems, but the mental stress does tire you out as does the lack of sleep, I fell asleep at the traffic lights going to work, irresponsible I know, I went straight home, it gets to you one way or another, so do not be afraid to accept help.

    I must go now get cleaned up and await the Doctor probably going to be the final chapter of my dear old dads story, but at least we have done all we could to ease the chaos and pain that cancer has given him.

    Good luck people take care -

  • Offline in reply to Iggy_S

    One other thing I have found useful during my care period is you get given a lot of literature caring for cancer patients etc etc am often too tired or don't have the time to read it all. So I have GoogleD things that I want to find out about and been directed to reputable sites like cancer research UK, etc and been able to get the low down on things that doctors and hospice people tend to skirt around. There is a lot of nonsense advice on the Internet so stick to reputable organisations.  

    I have found a lot of useful info online. 

    Worth having a look if you are unsure of anything or feel you are not being told enough. 

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