How to talk about end of life

Welcome, am I qualified to comment, I think not, however, my step father was diagnosed with terminal lung cancer and would receive palliative care only. He was a pharmacist and ran a very successful business, a clever man. He full understood the meaning of palliative care and yet at every meeting with oncology he asked what his treatment plan was going to be! Evry time he was told it was palliative care. It became very apparent in the very end, he fully understood, it was his coping mechanism, his show of positivity, his only "hope".

My wife continually states that she could not cope with being told that she had cancer and questions how I am so calm  (we have had our moments of desperation and panic).

 I have not provided an answer, but a view point from both sides, time and communication, mortality is an extremely complex issue to come to terms with. Just be there to hold his hand when it needs holding, or you need yours holding. I have not cried in weeks, my heart goes out to you.

Thank you for your sage words. It means so much.  
I truly hope you and yours find solace. 

First of all Thank you for bringing up something that I struggle with myself.

We all have different ways of describing and hiding our fears but they are ready-made and not meant to annoy others.

I find myself battling between the saddest feelings of loss for myself and the intransigence of hope. These two opinions that are so opposing sit in my head and confuse me.

You are there for him and, from my point of view, there is nothing more important than to have a hand to hold when I need it. You are his hand of hope.

The plans and bucket list are lovely ideas but the very reverse of my own personal thinking as I would not want you bankrupt (because of me) just so we can make memories for your future, I would want to be with you and try to be comforted together during this very individual and testing time.

My heart goes out to you and there are many ways you can reach for help. Here is a great start. We are always here to help you anyway we can. But there are talking therapies that might help you more.

The Macmillan Champions will help more than I but I hope you come to terms with your thoughts about your loved one. He’s a lucky man and I bet he knows it. You are a tower of strength, just being there to hold hands and see each other eye to eye is what’s needed to. The simple love you share.

Look after yourself too, you are the key to his end of life happiness.

Hello TrixieF25 and welcome. Talking about end of life is difficult, but important, as it can make things easier when the inevitable happens. My husband was diagnosed with an aggressive stage 4 prostate cancer five years ago and he died very suddenly 3 weeks ago. We lived life to the full right up to the day before he died, doing the things we liked best and now I am just ploughing through with all the administration to sort things out which was made easier by the fact that we had put our house in order when he was first diagnosed in 2020 with wills, cremation etc. plus knowing where to find all the financial documents. My husband was very anti about making a will because he believed it would be tempting fate but once everything was in order there was a sense of relief that it was done with and we could get on with doing the important thing of living life to the full for as long as possible. A positive attitude is essential in this fight and that attitude gave my husband a lot longer than expected - but nowhere near long enough. He was a fighter and dealt with all the hormone therapy, radiotherapy and chemotherapy head on but it did take its toll over time.

Your husband is probably aware that his cancer is treatable but not curable but his attitude could be his coping mechanism and a macho sense of trying to protect you. This 'couples' disease is hard on partners as well as the family. I used to shed tears in private but in the end realised that my fears were better shared with my husband so that he was aware of how his cancer affected me and it helped me come to terms with the fact that we would not have as long together as we had originally hoped for.

Being there for each other right to the end with both words and gestures means so much.

There is help available if you need it from Macmillan on their support line or maybe a Maggie's centre if you have one near you.

Hi there I am sorry to hear you are feeling like this and completely understand your pain and worry, My husband is in same mindset and as a positive person he has always looked on the brighter side.  We are now at stage where he is being sent home from the hospice for end of life care but we have not had "the conversation" The cancer has become severely aggressive in very short space of time but I feel if I tell him the full picture he will just shut down altogether as that tends to be how he deals with stuff - Im guessing your husband and mine are only too aware of the real facts but are possibly trying to shield us and themselves from the truth ?  Like you shedding silent tears is a daily process for us but I think in reality the unspoken bit is very difficult to navigate.  Please be reassured that you are not alone in feeling the way you do and all I would advise is that while your husband is able to do things he wants then grab all opportunities and get out there and do them !!! Time is of the essence so seize the moments with him make memories and know that deep down he will know what hasn't been spoken about and you are not living a lie but living the best you can do with what you have - love endures all and may God bless you both on this journey XXX

Hello Trixie, I’m so sorry to hear of your situation. It sounds as if you have a few friends you can rely on but your husband seems to be either in denial and/or trying to protect you.

i have, over the years, touched upon ‘death and dying’ in my academic research but i am not up to date with recent work and am, by no means, an expert on it. However a very well known piece of work and often cited is that of Elisabeth Kubler- Ross. She proposes 5 different stages that we all pass through : denial; anger; bargaining; depression; and acceptance. Passing through these stages is not  in a straight line! We might miss one out, go back a step or two etc. later works have suggested that people approaching their own end of life go through these stages, too, as they come to terms with their prognosis.

i actually think that my husband’s diagnosis pushed me into a grief for the loss of our lives as we knew it, the loss of future plans etc but i think it also included ‘fear’ of loss of my husband or having to watch his pain and suffering.

So, my own take is that grief is not just after the loss but can be in anticipation of loss and fear should be included in the mix of emotions.

i was a registered nurse. I did my training in the old fashioned way in the early 1970s. Then, we were told we must not discuss death and dying with our patients! Now, society is more open about talking about death but more often than not it seems to me that it’s about the death of others and not ourselves unless we are writing a will which can be locked away for years and years to come.

This was reinforced also by my studies that suggested  we all trundle through our lives without even thinking about our own deaths! More so when we are young! We are going to live for ever!!!!  However, ultimately none of us are going to live for ever! We are forced to face up to it at some time. My husband’s diagnosis brought me face to face with not just my fear for him but also to face my own mortality as absolute fact, inevitable and unavoidable and not at the arms distance of academia!

a few years ago I lost a very dear friend to pancreatic cancer. We both knew he was dying. Unlike your husband, he had no bucket list and, to me, he stopped fighting and gave up! I felt so angry that he had given up ! However, I recall one conversation we had . He was talking about his funeral arrangements and then went on to , ‘Is there a God and is there an afterlife? Are there such things as ghosts?’ I remember saying that if he is ‘floating around somewhere as a ghost’ he is welcome to come back and haunt me because I would miss him so much. I’ve never seen his ghost but the fact that I am recounting this shows that, physically, he is dead but he and the friendship he offered are still very much alive in my memory.

I don’t think I have helped you in how to talk about death with your husband but I hope I have perhaps helped you understand what might ( or might not) be happening and will happen for you and your husband.  You both now have a massive mountain to climb and the lack of frank discussion between you two, to me, shows that, actually, you are both trying to protect the other whilst also dealing with overwhelming emotions. I think and hope that you will both find you are able to talk about the future and take comfort from the discussions.

with much love and I hope I haven’t bored you with an overlong post x

Hello TrixieF25 

A belated warm welcome to the group, although I am so sorry to find you here under these circumstances.

You are in such a difficult situation and I can fully understand your feelings. None of us expects to be where you are now and I am pleased you have built up the courage to put your feelings down in writing and share where you and your OH are. It's important in circumstances like this that you look after yourself just as much as you do look after your OH.

He's got a "positive attitude", that's half the battle, yes, he can't be cured but the treatment he's on is to make life as good as possible. The bast advice I can give you is to go with the flow - do what you can with him, whilst you both can and make as many memories and good times as possible. 

Don't be alone in caring for him - we as a group are here for you - if you want to vent, we are here, advice and help again we are here. You may wish to join one of our other groups for support too and here's the link you  need;

Carers only forum  

It's important to seek out as much help as you can which will put you both in a better place. I notice Alwayshope suggested "Maggie's". This is a cancer charity where you can find help and advice - here's a link to find your local "Maggie's" "Maggie's". There's our Support Line too on 0808 808 00 00 (8am to 8pm 7 day's a week) give them a call - they will be able to offer help and advice - plus there's the local Macmillan centre at your hospital.

No one should travel this journey without any help and support - we are all here for you.

Best wishes - Brian.

I am not in your husband's position and may not be.

However, when I was originally diagnosed my immediate response was "I'm going to die!"

Due to the treatment I have I can add "not right away" I to that, but, of course, we  are all going to die. I've just been forced to think about it.

I have no idea a will, but I but I I must be updated to it. 

House is paid, everything is in joint names,  enough to insurance to pay for the funeral, the will gives everything to my wife, so that  all works.

I am writing some memorabilia, and will be putting together a funeral service, as I have come to think about it.

As a result of this I don't think too far ahead. 

It is possible that this disease won't kill me. Something will. 

I just have to get as much out of it as I can. So does my wife.

We walk on. 

We are both Christians, and have a faith in an afterlife though we might find it hard to get our perceptions to match exactly.

I have also had unrelated back problems, and the combination of the two had changed how I go about my life.

There was a story I heard on Radio 4, one of their "Thoughts for the Day" some years ago.

The story suggested that a Rabbi was being asked what what he was going to be doing that day. He gave a list of appointments and things to do. The questioner then asks was what he would do if today was his last day of life. The reply was the same list of events and tasks. 

The moral appeared to me that we ought to be doing what is important, and what we can, and what brings joy. 

I'm going with that. 

Thank you. Your words are a huge comfort. Xx

Thank you for taking the time to reply, and share your experience.
I’m so very sorry you lost your husband.  But what you’ve said has lifted me, and I’m enormously grateful for that. 

Please: how did you manage to get his affairs in order - as my OH also feels it’s tempting fate, and he has no desire to do so.

I’m being as diplomatic as I can, but the thing is, no one knows about all the practical details such as car insurance or what he actually wants for well, you know.

We’re not married. We are long term best friends who ‘got together’ maybe 6/7 years ago for a few intense years: it was he who nagged me for (at least) a decade to get together.
It’s a long, boring story. 
But - to cut a long story short, we ended badly (no fault on either side.) I felt he was emotionally unavailable, it was a constant source of confusion/hurt.

Met up accidentally (serendipitously?) last Christmas, and took off where we’d left off. I was unaware of the gravity of his situation. We had a cracking time for three months, then he went downhill fast.

I can’t help but think that as I fell in love with him, and also us being best mates for years, that he is rounding up his support mechanisms: I know it’s a horrid, cynical way to think… but he knows I’d help anyone. Any creature, any whatever that needs help. And I’d hate to feel like I’m just being taken advantage of due to my kindness. 
Sorry. I know this is cathartic. 
And I guess cathartism is part of ‘the journey’. I’m so angry and I’m finding it really difficult to deal with Xx