Leamington Spa pop-up: Saying goodbye, saying I love you, and are death cafes a western indulgence?

Even a drab industrial mooring at Leamington Spa, on an equally drab wet afternoon, couldn’t dampen the enthusiasm and passion of the eight of us who gathered together on Mystic Moon to talk about life, death, and what really matters.

The first theme to emerge was how difficult it can be to open up conversations when the dying person doesn’t want to talk.

‘You can’t force this kind of conversation onto someone who doesn’t want to talk about it. It is they who are dying, and it’s their dying experience,’ said one participant. ‘But you can still be there in all sorts of ways that show you care. I think that’s the most important thing.’

‘I come from a family who has never been the touchy-feely kind and we never talked about anything that really mattered,“ said another participant. ‘So it was difficult to know what to do when my father started to die. My sister-in-law suggested I just sit with him and stroke his arm. I thought he would draw away from me, but when I did stroke him arm, it felt really lovely to do, and I felt he liked it too. That was a great comfort to me.’

‘I also come from a family who doesn’t express feelings,’ said another participant. ‘But I wanted my mother to know that I loved her before she died. So I took the decision to tell her. Really tell her.

I held her by the shoulders, looked her straight in the eyes and said, “Mum, I love you.” She obviously misheard because her response was, “Alright, I’ll put it on in a minute.”   It made me laugh, but it also meant that I had to do it again so she got what I was saying. It made a difference to both of us.’

The participant added that they now end phone calls and conclude emails to family members with “I love you,” or “Love”. ‘I’ve notice my siblings have begun responding in the same way, which is a new thing for us all. Doing a little gesture like that has made us all closer without being heavy about it.’

This opened up a conversation about why is it more difficult for those of us brought up in Western cultures to express our feelings or even say ‘I love you.’

‘It’s very different in Italy,’ said a participant who had attended an Italian funeral. ‘My friend’s father was laid out in his coffin in the sitting room so people could come and pay their last respects. In the meantime, his wife was fluctuating between screaming her rage at him for leaving her, and sobbing with love for him and for the life they had had together. It was incredibly passionate and moving to witness her. The most remarkable thing was that everyone expected her to behave like this.’

‘Can you imagine doing that in the UK?’ remarked a participant. ‘You’d get locked up, or put on heavy tranquilizers.’

‘It’s too late if you don’t say what you want to say before someone dies,’ said another participant. ‘It can leave you feeling very guilty and remorseful thinking you should have said this or that.’

‘But it’s never too late,’ said another participant. ‘You can do it in your head, You can call the person in [into your minds-eye] and have as many conversations as you want. Sometimes it is so impossible to do this when they are alive that this is the only way.’

‘I did that when my father died,’ said someone else. ‘For various reasons, I wasn’t allowed to throw soil on his coffin or do the rituals I wanted to do for him at his funeral service. So on the anniversary of his death, I created a ritual for him. I lit a candle and in my head imagined giving him the funeral that I wanted him to have, and I know he would have much preferred. I found great comfort doing that.’

‘It’s about find ways of saying goodbye that work for you,’ said a participant. ‘The person might not even know you are doing this, but that doesn’t matter. What matters is you feel you’ve done your best.’

‘I agree with that,’ said another participant. ‘Even though he was unconscious, every time I left my father I said goodbye to him in case he died while I was out of the room. These goodbyes must have added up to more than thirty by the time he eventually did die. But each time I said it, I knew I was preparing myself for his death, so when it happened I was ready to let him go.’

‘It’s a funny feeling when you are with someone who is dying, or has just died,’ the participant continued. ‘I felt as if I was walking around in a bubble, and out of sync with the entire world. I couldn’t understand why people were laughing, or shopping quite normally. I wanted to yell at them, “Don’t you realise that my father has just died.”

‘I wish there was some way of letting people know you were grieving,’ said a participant. ‘In the old days the Victorians wore black for a set length of time, and during the wars people worn black arm-bands. They were treated respectfully because everyone knew the protocol for bereavement.’

‘But these days, people have no idea what to say if you tell them someone has died. They either end up crossing the road, or saying really helpful things like, “ I know just how you feel, my hamster died last week.” Or, “You know, you should get out and join a club.”’

‘Oh yes,’ said someone else, ‘then there’s the over-close lean-in with the raised eyebrow and lowered tone asking, “Are you alright?” But you know it isn’t genuine. They are trying to make themselves feel better because they haven’t got a clue what you want or what you need.’

‘My friend experienced this after her daughter almost drowned,’ said another participant. ‘She had left her eighteen month old daughter in the bath on her own for a moment. When she returned she found the child under the water. She ran with her to the hospital. They saved her life, but the child was severely brain damaged. So the little girl we all knew and loved had in fact died, and very few of us knew how cope with it, or what to say to the parents.’

‘It also does pose the question, when does someone actually die?’ she concluded.

‘Death does change family dynamics,’ said another participant. ‘No-one really addressed my brother’s death, so we all pretended we were one big happy family, mainly for my father’s sake. But the truth was I adored my brother, and I was left with a brother who I disliked intensely. This finally blew apart when my father died, and we could all stop the pretense. It’s a relief actually.’

One participant, a retired social worker, expressed concern that although she respected what we were talking about, and had been moved by the stories she had heard, she felt that, compared with the experiences of those who live in war zones, the death cafe could be viewed as a middle class Western indulgence.

‘These people lose everything,’ the participant said. ‘Their homes. Their culture. Their families. Their identity. Their lives are completed devastated. Many become refugees or asylum seekers who no-one wants. How do you ever recover from that kind of loss and grief?’

It’s an impossible question to answer from the comfort and intimacy of a narrrowboat. But her comments opened up a discussion about the extraordinary tenacity of human spirit, and the immense courage that people possess in order to continue to survive in such horrendous conditions.

One participant spoke of a Jewish woman in the Belsen concentration camp who had been thrown onto a pile of bodies and left to die. ‘But she found the strength to crawl out,’ said the participant. ‘She had such a will to live, and she did.’

It gave us much to ponder upon as our pop-up drew to a close.

A few days later, I am still pondering:

I understand why a group of people gathering together to talk about death and dying might be viewed as an indulgence when so many people around the world are facing such extreme violence, loss, and destruction.

But I believe that it’s important for us all to deal with whatever life throws at us personally. Death is part of the human condition, and there are so many different ways for it to happen. Some of us die quietly, some die dramatically, some in great pain, others in tragic circumstances, and others again destroyed by wars, famine and disasters.

I believe that talking about death and dying makes us humble, and opens us up to be more compassionate, loving, and accepting. We can’t save the world, but we can do our little bit to make it better for someone else as they approach the end of their life.

However challenging it might be or however inadequate we may feel, I believe this is a true act of love.