Dying Matters Week - Let's talk about it Diane Evans-Wood shares her experience of making plans for the future - and explains why she would encourage you to do the same It’s Dying Matters Awareness Week, with the theme for 2019 being “Are we ready?” It is a question for us as a community, as well as individuals. Are we ready to help others get their affairs in order? Are we ready to help people who are caring for someone who is dying? Are we ready to support someone who is grieving? Or even are we ready to talk about it? Dying Matters is a familiar campaign to me after working as a Palliative Care Clinical Nurse Specialist for most of my 30+ year nursing career. I have supported and facilitated many patients and their families in planning their end of life care and funerals, but this year it is much more personal for me. I am now ‘that’ palliative patient and I am starting to put plans into place for my own care at the end of my life and my own funeral. Over the years I have written these plans in one form or another, so I have a very good idea of what I want to happen. What I wrote several years ago is a little outdated, in that my circumstances and views are changed. However, that’s the thing about these plans - they can change and evolve over time, but the most important thing is to have the conversations with your loved ones about what your wishes are. We shy away from talking about death and dying, yet there are two certainties in life; we are all born and we are all going to die. Some of us will die sooner than we would have wished. In avoiding these conversations, we run the risk of never achieving what we wish for at one of the most poignant and important times of our lives. Not doing anything is just not an option for me Please don’t leave it until it is too late, as life can be so fragile and gone in a flash. Our family is no stranger to tragedy and we have suffered losses through sudden deaths of several much loved family members. There was no chance to say goodbye, no chance to put affairs in order, no chance to have meaningful conversations about their funeral wishes, no chance to say the things we really wanted to say, and it is extremely painful. Regret is a lifelong burden and I urge everyone to write a will and think about what they would want at the end of their lives, not to put this off because it is too uncomfortable to think about. I have been living with cancer since 2014. After having various treatment regimes, I recognise that the options for me are starting to quickly diminish and I want to be ready for all eventualities. Whilst I am still relatively well, I am starting to revisit what plans I had for my end of life care and my funeral. It’s really not easy to do this when death is now becoming more of a reality for me, but the thought of my husband, son and family having to sort it all out after I have gone fills me with an overwhelming sorrow that is even more unbearable. I have time to do this and I also still have time to live, so now is a good time to start planning. Over the coming months I will get all of my wishes and thoughts down on paper and have conversations with my loved ones so they know exactly what to do when the time comes. I don’t want my husband, son, family or closest friends to have any worries about what I would want when I die and afterwards. They will have enough to think about without sorting out all my affairs. After a lot of contemplation, I have approached a funeral director who is able to fulfil my wishes. In fact, the funeral director is a part of the hospice that I worked with for 13 years and so it feels much more bearable to talk openly about what my wishes are. St. Margaret’s Hospice is family to me and I still feel a deep attachment to them as an organisation. The whole process of planning ahead feels strangely empowering Aside from my funeral, I will write down and talk to my loved ones about what I would want in terms of end of life care. I have the knowledge to do this from my professional experience, but for anyone needing guidance there is support near you to empower you to do the same. If you don’t know where to start, the best port of call would be your Nurse Specialist, GP or hospital consultant, who will be able to point you in the right direction. I have already started to think about what I want to happen to some of my possessions, as there are only so many badger ornaments my husband will want to keep around the house. I have begun the arduous task of sorting through photographs and other memorabilia with the intention of creating a memory box and photo album for my son. I have purchased cards to write on and thought about who I want to write letters to. In fact I have so many ideas that I probably won’t achieve all of them… There has to be time to live and time to be life affirming in order to bring balance. Thinking about death and dying is exhausting and it’s easy to feel emotionally wrung out because, to be quite frank, I don’t want to leave anyone behind and I can’t bear the thought of not being here. However, not doing anything is just not an option for me. The whole process of planning ahead feels strangely empowering and is a way of regaining some control in a situation when so much control has been taken from me. I hope I have inspired you to think about what your wishes would be and to have those important conversations with your loved ones.