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.’

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

On the way to Leamington Spa
On the way to Leamington Spa

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.’

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Berkhamsted pop-up death café: Visions for the future of end of life care

Arriving at Berkhamsted
Arriving at Berkhamsted

Berkhamsted pop-up wasn’t so much a conversation about end of life issues, but more of a brainstorming between local GP Dr Jo Withers and her business partner, Sue Raynsford from Finity, Gita Kadirgama, Jo’s practice nurse, Mirelle Hayden (she also came to the King’s Cross pop-up death café) who manages Future Matters and Gentle Dusk, and Sally Whitworth who runs the Aylesbury Vale Natural Burial Meadow, about how end of life care information and alternative funeral services can be better delivered nationally.

We all agreed that end of life care in the UK is woefully lacking in unity and consistency. While our hospice service is regarded as the best in the world, the report from the parliamentary and health services ombudsman, released during Dying Matters week, shows that lack of compassion at the end of life provided by the NHS is causing considerable suffering and lack of dignity to many patients and relatives.

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Conversations with Parents, Romanticised Eulogies, and Talking About Stillbirth

Mystic Moon moored at Paddington
Mystic Moon, Paddington Basin

This pop-up was requested by four psychotherapists, three of whom were about to enter their final year of training.

What a delightfully enthusiastic group. The trainees came with paper and pen, ready to take notes, but these were soon cast aside as they opened up to their own personal experiences of death and dying.

We talked about a wide range of topics, so I will be just highlighting the main points.

None of the group had been to a death café before, and had been surprised by the reaction of friends and family when they told them what they were doing.

One said it had helped to open up a conversation with a close friend who spoke about a funeral that she not previously mentioned.

Another said that when she told her friend about it, the friend looked aghast, saying ‘How weird.’ ‘She couldn’t get her head around why I would want to do something like this,’ she laughed. ‘But she was certainly curious to know what it was going to be like.’

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Summary of the King’s Cross pop-up death cafe

20150511_163106This pop-up was co-hosted by Julienne McLean, a psychologist and Jungian analyst and spiritual director, based in north London. Julienne works with clients who experience bereavement issues throughout life.

Up until now, people who come to the pop-up death cafes have been personally interested in end of life care, or have family and friends who have died or who are dying.

Coincidentally, those who came to the pop-up at Kings Cross were all professionals in their own field who used creativity to help people to talk more openly about end of life issues.

So this café had a very different feel to it even though it was just as interesting and rewarding as the previous ones.

One participant had worked with a children’s bereavement charity for many years, and wanted to work more directly with the dying.

One was part of a theatre company, researching for a potential project about  the issues surrounding dignity in dying,

One was a television producer, researching for a three part series on end of life issues, including assisted dying.

One ran a training programme for volunteers in North London, which empowers communities to plan for the final years of life.

One worked for Age UK as a project manager, coordinating volunteers and organisations to have conversations around putting plans in place for end of life.

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A Marathon Journey and a whole load of friends to help along the way.

20150428_195155Sitting on Mystic Moon in Limehouse Basin on a gloriously sunny evening, pinching myself to make sure I am not dreaming, and giving thanks to everyone who helped me get here.

It’s been quite a trip getting up the Kennet and Avon, entering the Thames, and then making the awesome voyage down the tidal Thames under Tower Bridge, before that treacherous turn into Limehouse lock.

The entire adventure reminded me of two great teachings:

One – it really is not about the destination. The journey is everything.

Two – There’s always someone to help. All you have to do is ask.

So this is a eulogy to those who tipped up at the right moment and so generously gave their time and enthusiasm to make sure I completed my overwhelming desire to do ‘The Thames Dash, which, quite unwittingly, I had chosen to do on Sunday, 26th April: the day of the London Marathon.

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Moving aboard Mystic Moon

Mystic Moon in Bradford on Avon Marina
Mystic Moon in Bradford on Avon Marina

Dooey, my cat,  and I now officially live aboard Mystic Moon in Bradford on Avon Marina. Her living quarters are delightfully welcoming, warm, and cosy. In fact, as you can plug straight into mains electricity and water, it’s similar to living on land, except, of course, it’s much smaller, and you have to find somewhere to pump out the loo every so often.

But the other end of the boat is quite a different matter. For this is where the engine department resides.

My early days on the canals were spent on rented boats, and latterly on a sponsored boat. A sponsored boat means you own it outright, but you are in business with a narrowboat rental company who manage and maintain it throughout the year. The owner has up to three/four weeks ‘free’ access a year, while it is (hopefully) rented out the remainder of the time as a 40/60 split in favour of the rental company. This may not sound the most sensible way to invest money, but it gave me the pleasure of owning my own boat and guaranteed time on the canals each year, while receiving a modest income each month.

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