10. "Here, we are talking about death and dying in a cool way": being part of the All Together Group

Written by Jordan Smith, Quality Consultant at Dimensions and member of the All Together Group on The Victoria & Stuart Project.

I joined the All Together Group because I wanted people to be more open and honest and excited about death and dying (not that it is exciting to die). I am a humorous person, I like to make other people laugh. My own death is going to be a celebration, an event of my life. I want us to celebrate death and dying, to remember people.

It is ok to have a good cry, to have tears (when you laugh a lot, you can cry with laughter). I have lots of friends with life-limiting conditions that have died. The way that they died, they got progressively worse, but every single funeral I have been to has been a celebration of their lives. In a church, with cake and laughter. What I really took away from their funerals is that everything was planned to be like that. The All Together Group reminds me of them.

What I like about the group is that we talk about really hard and serious things but along the way we always have a laugh. We talk about funny things, and cake and food. When I talk about cake, it is my way of bringing humour to the group as cake makes me happy. I really like the people in the group, they make me feel relaxed. The group has created a feeling of being safe: safe to speak out, safe to say what you want but also it is safe to not say anything at all.

I really like that not anything is on paper, I never carry a pen to write anything down. Everything we do is practical (the washing line game, music, the hat game), even though I am not one to dance, I enjoy those parts of the session. That makes us speak up a bit more on the subjects.

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I think although I said that during filling in my end-of-life plan, I was too young. I did my own end-of-life plan because:

1. I was in a bad shape and I didn’t know what was going to happen.

2. Also, Dimensions did suggest it was good to have one if I wanted one.

My friends with life-limiting conditions all had one, and thinking about it, we don’t really talk enough about death and dying and funerals in our lives. It upsets people that we know and who we work with. But here, we are talking about death and dying in a cool way. We aren’t scaring people with it. We are being brave in talking about our future and what we want to happen. If you said "Jordan, go away and arrange a big party for everyone", I would love it! It doesn’t need to be sad. I want people to cry at my funeral if they want to, I want them to remember the day as it should be: everything about me and if it is everything about me then people should smile.

What I have learned so far from the group is how brave and open and honest people are and that no one is afraid to disagree with anyone because that has been made ok for us to do that. Usually when you disagree with someone, it can be quite challenging. But in our group, you are allowed to have different views to everyone else. I think that allows the group to really get some good work done - and also we get a lot of work done, the sessions allow people to think (we are so comfortable). The more we think about our own lives and lives of other people, I have learnt that it is ok to be different. It is ok to ask for help, and it is ok to do something you haven’t done before. I will not say that I will start singing in the group, but you never know!

It isn’t something usually we speak about in a fun way. You are given an end-of-life plan and asked to fill it out if you want to. This is different. You can tell it means a lot to people, people cry in the group, people break down. I think I have learnt it is ok to be vulnerable. Not just about death and dying, it is ok to be vulnerable in life. I now feel comfortable to be vulnerable to share my own views and experiences and there aren’t many places where you can be vulnerable and for that to be ok. Everyone in the group has been vulnerable, everyone in the group has shown courage and bravery. Everyone has cried, that sometimes makes me a bit sad (lump in throat), we then stop and have some cake or dance.

I really like the TalkingMats (when she got it out, I was expecting the mat to talk, to say hello or something, but it didn’t). I think the TalkingMats idea can work for people because it has pictures, if you can’t read you might be able to understand the pictures.

For future groups, I don’t really want it to finish. I am enjoying it. I look forward to seeing everyone, I look forward to listening to the experiences of people’s lives. I am looking forward to all the work coming together at the celebration event. I am looking forward to seeing all our hard work become a physical thing, a really really good end-of-life "thing!" that other people can use. Talking about death and dying doesn’t have to be scary, sad or upsetting. It can be proud, you want to be able to look back through your own life and say you had a really good life. You celebrated it from beginning to end. We are not sad when people are born, it is all a big celebration, most people when they have a life limiting condition, I have seen friends live and celebrate right to the very end. End-of-life planning should be a reflection of that: life!