Dying Matters Week: Sussex woman diagnosed with aggressive brain tumour throws party and encourages others to talk about death

The national awareness week runs from May 13 to 19. It is hosted by Dying Matters and its coalition of members, with a range of community-led events taking place across the UK. The idea is that people start talking about their wishes, making wills and thinking about whether they want to donate their organs. But the most important thing is that they discuss these wishes with those closest to them. Dying Matters Week also encourages people to discuss bereavement in a bid to help people deal better with the difficult and painful process. An inspirational Sussex woman who has been diagnosed with an aggressive brain tumour has been told she has just weeks to live – she describes her position as ‘privileged’ and has thrown herself a party. Sue McLean, a registrar for 31 years, had a couple of ‘funny turns’ last month before being diagnosed with the terminal illness. Despite the devastating news that she only had weeks to live, 68-year-old Sue, has the most remarkable attitude to her prognosis and has spoken openly about her impending death. She said, “Whilst it is incredibly sad, I think I have been given an amazing and special privilege and a unique opportunity. “When someone has a terminal illness they know they are going to die. I want to take full advantage of the unusual position I find myself in to be able to choose to do the things that matter to me. “Few people get to hear the things people say about them – either good or bad – which seems a real shame.” Sue, together with her husband Alan, opened their Eastbourne home to their dearest friends and family for a ‘final big party’. Sue and Alan said the occasion was ‘upbeat, relaxed and informal’. Before the event, Sue said, “The day will provide an opportunity to chat about the good times, remember the absurd and foolish times and all the things we have done together.” A recent survey has found people are thinking more about death and starting to make plans, with younger people considering their options too. A survey of more than 2,000 recently bereaved people has found 19 percent of 18 to 34-year-olds have gone on to plan their own funeral following the death of a loved one. This contrasts to just one per cent of this age group that had planned their funeral before the bereavement. The trend spans all ages but is most remarkable in the young, according to research released today by family owned funeral directors CPJ Field. Looking at older age groups, 15 per of 35-54-year-olds admit to planning their own funeral since experiencing a death close to them. The same goes for 10 per cent of over 55s. This lower percentage may be due to five per cent in this age bracket having already planned their funeral before the bereavement. Looking across generations, almost half (47 per cent) agreed that the death of a loved one has made them more likely to plan their own funeral. This follows news from Macmillan last week that 36 per cent of the British public have made no plans surrounding their death, including making a will, end of life care and recording their funeral wishes. The researchers believe the comparison between the two studies - one general population, one of recently bereaved people - suggests bereavement can be the deciding factor prompting people to confront the taboo of planning for their own death. Jeremy Field, managing director of CPJ Field, said, “Bereaved people know better than anyone that having a clear understanding of how a loved one would like to be remembered can affect grief. Many of the people we support feel a strong desire to get this right for the person they love. Experiencing a loss can also bring us closer to our own mortality and may be leading people to put basic plans together for their own funeral, to protect their loved ones when the time comes.” Almost half (47 per cent) of the bereaved people surveyed reported having understood their loved one’s funeral wishes in detail, while another 35 per cent had some idea and 19 per cent knew nothing about what they wanted. Four in five of those who knew these funeral wishes said it helped them feel they were doing the best they could for the person who had died. More than three quarters (76 per cent) reported it eased the pressure around planning the funeral, and almost the same amount (73 per cent) said it gave them the space to consider how to help themselves and the rest of the family to grieve. Jeremy Field added, “Under the theme ‘Are We Ready?’ this year’s Dying Matters Awareness Week involves community events throughout the country, with imaginative ways of encouraging people to talk about death, dying and bereavement. “As a society, we are more shielded from death than ever before, making us ill-prepared for the unimaginable when it inevitably comes. Talking openly and honestly about death, no matter how morbid it may feel, is the start. “Anything that helps prompt us to engage with this most difficult of topics is to be welcomed, both for ourselves and for those we love.” During Dying Matters Awareness Week, West Sussex libraries, including Crawley, Haywards Heath, Worthing and Chichester, will be sharing information and resources to prompt people to think about their plans and choices, and to stimulate conversations with their friends and family. There will be books about living and dying well on display from a range of genres, including adults’ and children’s fiction, death and dying in society, practical manuals, memoir and self-help. There will also be a booklist to take away which has been developed with St Catherine’s Hospice library. Anna Raleigh, Director of Public Health at West Sussex County Council, said, “Talking about end of life care can be difficult, but having conversations about what matters to people as they approach the end of their life is the first step in ensuring people can make choices to enable a good death. “Our aim is to build compassionate communities across the county, where people are able to have conversations about living and dying well and to support each other in emotional and practical ways in times of crisis and loss.” For more information on Dying Matters Awareness Week 2019 visit www.dyingmatters.org/blog/dying-matters-2019-theme-are-we-ready