Conversations around death

Hi Pinkfizz101

I hear you. 

We struggled to talk about things during the 3 plus years that G fought his GBM battle. He refused to talk about it but when we moved into the palliative care phase the community nurse and local hospice nurse both asked him straight how he felt about death/dying. He never really opened up on the topic but he did say he was scared of being in pain. Both nurses promised him that he wouldn't be and when the time came, he wasn't.

Talking about relationships is another tricky one. It is all too easy to assume the relationships among/between family members was all rosy and perfect pre-diagnosis. No one even really mentions the additional strains on everyone where there is pre-existing tension in a relationship. It's easier for everyone, professionals included, to assume all is well.

I feel communication is key throughout the journey and that everyone involved should be able to be open and honest whenever possible. By the time we were  advised to have all the conversations we wanted to have it was actually too late as the GBM had impacted G's ability to communicate and understand. A lot was left unsaid.

When the final few days were upon us, conversation wasn't possible at all as whatever stroke/seizure he had robbed him of the remaining ability to speak. He could still give a wee smile for  day or two but I have my doubts as to whether he really knew who he was smiling at. 

All anyone can do is their best and balance everyone's needs as best as possible. It's a minefield and a total roller coaster ride for the emotions.

sending love and light and strength to everyone going through this.

Wee Me xx

Hey,
First of all thank you for sharing this, sometimes I do feel like that myself. Another family where talking about feelings has always been hard. 

Truth is, my father cognitive capacities declined very quickly , right now having a real conversations is impossible , let alone a hard one. 
I do believe that getting your needs met in this particular scenario is secondary to respecting your loved one feelings (debatable ofc). Having said so, this does not mean that maybe your dad needs to talk about it even more than you do and feels the same struggle. What I suggest is testing the waters with it and evaluate the feedback you receive. 
I never had a straightforward conversation about death with my father but when he still had the cognitive capacity to hold conversations we used to talk in ifs or listen together to podcasts about this topic (even without commenting them but just hugging and letting those emotions flow) and still it was one of the most painfull experiences of this whole roller coaster of an year. I don't regret anything , that was all that my dad could handle at the moment and all I needed was to make him feel that It is hard for me too to lose him day by day, after all, that comes from a place of profound love.  
I still cry my eyes out when thinking about it but it was indeed quite therapeutic for both of us, for me I feel like it was very contraddictory to keep the happy face while things were so clearly not good, and crying toghether about it was hard but made much more sense. 

Hoping you find a way to deal with it in a way that feels right to both of you and that honors your relationship with him.
Don't underestimate the power of physical connection when words feel like too much to bear. 

Lots of love , 

I have had conversations with my husband, usually in the middle of the night when he wanted to talk. Not so much now but I am glad we chatted when we did.He has never been one for showing his emotions but he surprised me by saying what type of funeral he wanted. He wants a natural burial and even knew where he wanted to be buried. He has chosen his music and a poem he would like me to read. He occasionally mentions his funeral and that he won’t be here long. He gets very tearful but says he is ok. He too was worried about being in pain but has been reassured that he will just be asleep a lot. I know it will give myself and our two children comfort to know we had this conversation.I hope you manage to speak with your dad and it is a good conversation.

In our case my wife has really tried to stay positive throughout so she's avoided any talk of an ending. 

Early on I broached the subject but she soon closed up. It's just too painful and I'm not going to keep bringing it up. Since our last bit of bad news I have persuaded her to do a bit more counselling with the local cancer support charity though she hates talking about herself.

I'd second what EarlyGrey says about physical contact. Sometimes just the way you hold somebody's hand or hug them close tells them just as much if not more about how you're both feeling. 

Hope you both find the right way to get through this

Chris

Thank you lovely. Your words are always so uplifting, grounding and wise. 

Sometimes all we need is validation that whatever our current feeling is (whether it be anger/sadness/happiness/relief) okay to experience and that we're all human ultimately.

Thank you again, truly. I feel as if you help so many people with you words. Sending love 

Hey Evajean,

Thank you so much for taking the time to read this and respond. I always find it helpful to get other people's opinions- it makes me feel less alone and a bit more capable of knowing how to navigate certain situations.

Yes, definitely. It's hard to balance 'normal' life with thoughts that you naturally have around these huge 'taboo' topics. And bringing up these things at the appropriate time. 

I had a conversation with my Mum a few days ago and she told me that her and my Dad do talk about death sometimes. It gave me comfort.

Thank you so much and sending love to you X

Thank you Chris, your wise words are always appreciated and I hope you are doing okay.

Such a tricky one isn't it. When it does get nearer to the end, I'm almost hopeful that the finality of it will maybe change my Dad's view on vocalising the topics with me. But for now, I've tried to take a step back and process things internally I guess.

You're so right about physical contact. 

Thank you so much and I'm sending love to you and your family.

Thank you for taking the time to read and respond to me, it's really lovely of you.

I think I'm really conscious of what you mentioned- how soon my Dad's cognitive abilities may decline and I would have wished that I tried at least.

Wow, thank you for sharing your experience. I feel like listening to a podcast could definitely be a way to broach the subject or at least, open up the dialogue.

I really resonate with the comment you made about crying about things seemed much more sensical. I remember at the start of my Dad's illness, 2 years ago- it was the day we found out that essentially this illness would take his life. That evening, I was hugging my Mum in the kitchen as we both cried. My Dad came down from upstairs and told us that it would be okay, we didn't need to cry. He went out in the garden so I followed him and found him sobbing into the night. And I just held him as we both cried together. I'll cherish this memory, despite it being so gut-wrenching, so beautiful at the same time.

Your words have really touched me, thank you so much for bearing your insights. I hope you're doing okay lovely 

Glad it helped to share my thoughts. Sadly my husband has now been moved into our local hospice. He is receiving wonderful care but at times is frightened. We know we have not got him for long now and my heart is breaking at losing my soul mate for all these years but also my son and daughter who are struggling with losing their dad. My husband had a chat with my daughter yesterday when I wasn’t in tge room and he was reassured that everything was in place for his natural burial. This gave him a little comfort.  Hope you manage to enjoy Christmas. Xx