Gloucester pop-up death café: Fear of dying, how you live is how you die, and the need for clear language by doctors

Gloucester Docks

Gloucester Docks

The tenth pop-up death café on Mystic Moon took place in sight of two magnificent tall ships currently being refurbished in Gloucester docks.

Similar to all the previous pop-up death cafes, we spoke about a  variety of topics. So this is an overview of what we talked about.

Our café started with one of the group confessing, in spite of being an ex-nurse and having been present at several friends and relatives’ deaths, how fearful she was of her own death. ‘I was conscious that I was making myself think of anything else but my death as I drove here. I feel very frightened even admitting to myself that it’s going to happen to me one day.’

‘I feel the same,’ said another participant. ‘I can’t imagine not being here. But even more scary is the thought that no-one might want to come to my funeral.’

This opened up a discussion about how long we are remembered for after we die. We agreed that probably up to three generations will actively know us during our life time. After that, we become a memory caught in a photograph or on film. ‘Well, before we were born, the world got on fine without us,’ said one participant wrily, ‘and it will certainly continue to be fine without us after we die.’

‘That’s a very humbling thought,’ said another participant. ‘It makes me feel I need to do something that counts while I am still here.’

‘Me too,’ said someone else. ‘My Mum was like that. She was such a lovely person. I wish the babies being born into the family at the moment could have known her. It makes me very sad that they won’t ever have the chance.’

‘I think this is why it is so important to accept you are going to die,’ said another participant. ‘It  means you make sure your life is worth something. That you’ve done your best to leave good memories of yourself behind. I think that’s what life is all about.’

‘I believe how you live affects how you die,’ said a participant. ‘My grandmother was a warm, loving woman, and she died with a huge smile on her face. She had been blind for some time, but she seemed to be looking at something or someone one as she neared the end. The strange thing was how her eyes got clearer and clearer as if the sight had come back, until they were crystal clear. A couple of weeks before she died, she said that her own mother was waiting for her, so I am convinced her mother had come for her, and this was who she was looking at. Although I was sad when she died, it made a huge difference knowing she was so happy.’

‘My father had a terrible death,’ said someone else. ‘But he had so many secrets and unresolved issues, I am not surprised. I used to sit with him every day, and in the end I found his suffering so awful I wanted to put a pillow over his face to end it. It wasn’t physical suffering, although I am sure he was in that kind of pain as well, but I believe it was more emotional and spiritual. He fought his death until his last breath, and when he died his face looked like Edvard Munch’s The Scream. Whenever I think of him, that image always comes into my mind.’

‘My mother also had a horrible death,’ said another participant. ‘She never spoke about anything that really mattered. So she remained in character right up until the end. I think she was dealing with some very deep unresolved issues during her dying process. It was horrid seeing her like that, and all I could do was sit with her and hold her hand. I was very relieved for her, and for me, once she died. I felt she was at last at peace.’

‘The best death I ever experienced,’ said one participant who had been a nurse, ‘was of an elderly lady who had been admitted into a hospice. She said to the person who was admitting her, “I’ve come here to die in peace, comfort and luxury.” What a wonderful thing to be able to say. She had a lovely death, surrounded by lots of candles.’

We agreed that stories like this gave us hope, and also reminded us how important it is to be at peace with ourselves and our lives as we grow older.

‘I didn’t have an issue with how my grandparent died,’ said someone else, ‘but I did with how they were treated in hospital, and what the doctor said to me. None of us were expecting her to die, so when I was called in I wasn’t sure what was happening. All the doctor said to me was, “It’s almost time.” “Time for what?” I asked. He repeated again: “It’s almost time.” I looked at the nurse who was with him is complete bewilderment. Then the doctor said, “Time to pass.”   “Pass what?” I said. The nurse twigged I didn’t have a clue what was going on, so she took me aside and explained my grandparent was dying.’

‘The doctor left, and the nurse was about to go too, which meant I would be left on my own with my dying grandparent. I was utterly terrified and I said to her, “Please don’t leave me. I’ve never done anything like this before.” Thankfully she stayed with me until my grandparent died. ‘

‘This taught me so much about how poorly many hospital doctors communicate with relatives, and how they take for granted that we understand these euphemisms that are used instead of actually saying “Dying” or “Died.”’

Our conversation moved onto talking about how many people don’t know what to say when someone has died, but especially after a suicide. ‘It’s the unmentionable,’ said one participant.

The participant asked whether the act of someone committing suicide could be seen as the same as a terminally person asking for their life to end prematurely should the Assisted Dying bill be eventually passed in Parliament.

We all agreed that suicide was a different agenda to assisted dying. All of us were filled with dread of being kept alive because medical science is able to do so, and believed that assisted dying in certain situations should become a human right.

This prompted us to commit to making or updating our Wills and our Advance Decision or End of Life care Plans, so our relatives fully understand the end of life care we wish to receive.

What a fitting way to conclude our death café.

I was particularly heartened when the two participants who confessed how scared they were talking about their own death at the beginning of the cafe ended by saying that they felt much more accepting of their mortality. This proves to me the importance of coming together to talk about death and dying in a relaxed and informal setting.

I would like to thank Radio Gloucester and the Anna King Show for interviewing me about this pop-up Death Cafe.

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