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Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
We have around 12,000 members, and are actively enlisting those that are committed to supporting changing knowledge, attitudes and behaviours around dying, death and bereavement.
Dying Matters champions Tony and Dorothy Bonser, together with film-maker and healthcare chaplain Kathleen LaCamera, travelled to New Hampshire this summer to lead workshops on dying, death and bereavement at Camp Winni, a retreat on the shores of Lake Winnipesaukee which celebrates family and friendship. Tony and Dorothy share their experiences of a week that turned a fundamental cultural assumption - that Americans can discuss everything openly, including grief - on its head.
Every morning at half past eight we sing 'Wooo–ooo–ooo' to Georgie. Not the way we usually greet the start of a new day, but that was Camp Winni.
The camp originated 98 years ago at Dartmouth College, New England, as a training facility for Methodist Sunday school teachers, but over the years grew, both in size and concept. Now it has nearly 300 regular attendees drawn from all backgrounds, faiths and areas, which this year included our contingent from the UK, and all ages, from a newborn, to Bob, who, at 89, is one of the oldest and most enthusiastic campers.
No longer purely religious-based, nor a training camp, the theme for this year's Camp Winni was Common Ground, and from the start we were struck by the feeling of total acceptance from everybody. The camp attracts a rare loyalty: some people have been coming for 50 or more years, while many are second or third generation attendees. We were also struck by the number of teenagers and young people, their enthusiasm and talents, and the ease with which they integrated. They were the group who instigated a camp-wide discussion about the misuse of alcohol, claiming that by excessive drinking some of the adults were setting a bad example to them. We were left wondering how likely that would be in the UK!
The morning chant - to George Washington, or rather, Mount Washington, which is 30 miles to the north and not actually visible - heralds breakfast, and is followed by classes in, among other subjects, haiku, dance, mindfulness and politics. We, along with Kathleen LaCamera (producer of Dying for a Laugh among other films for Dying Matters), were leading workshops in bereavement and spiritual support at the end of life. We are developing a peer support package in spiritual care for use in Methodist churches in the UK and were interested to use the material with a USA group and discover whether their experience was different to ours.
What struck us immediately was the interest the subject of end of life care aroused. We ran two workshops each day, attracting more than 40 participants, who remained faithful throughout the week. As always, we had thought that death was a subject which might put people off. As always, we were wrong. The sessions were deliberately structured to give people space and confidence to talk openly about their own experiences and feelings. We wanted them to go away with a range of ideas for creating support within their own communities, whatever the nature of those communities was. We perhaps expected that the Americans, with their reputation for being more open about their emotions and feelings, might have less need for permission to talk than us stiff upper-lipped British, but again we were wrong.
We told our story, being open and showing our vulnerability, and this seemed to release a real need to talk, not only in the workshops but wherever we found ourselves. At mealtimes we were joined by people who, rapidly, began to tell us their experiences and express their concerns. We heard of potential suicides, those who had lost children and were still trying to cope, of feelings kept unspoken for too long, of people who felt isolated within their own communities by grief. It was an immense privilege to be entrusted with their confidence, and emotionally draining. We were drawn into a complex and rich social gathering, invited to soirees, concerts, hootenannies, campfires, coffee evenings and a huge range of events celebrating the camp’s theme of Common Ground, and we certainly felt that in end of life care and bereavement we had much common ground with our American friends.
One feature of the workshops was decorating Day of the Dead Cookies. We were surprised that hardly anyone had heard of them, but there was immense enthusiasm. Despite being told that Americans didn’t decorate cakes and we wouldn’t be able to get the materials, we found just what we needed at the local supermarket, with the help of an engaging local couple who were fascinated when we told them what we were doing.
The event itself, the decorating of the cookies, proved the perfect scenario for course members to talk among themselves. We were delighted at the enthusiasm shown by everyone, especially the men, and by their pride in their finished achievements. Many have told us that they will be holding Day of the Dead events this year, from Texas to the Canadian border.
At the end of the course, the attendees came up with an amazingly varied and creative list of ways in which they wanted to initiate better spiritual support within their own communities. We were left with a strong feeling of dedication and commitment, and the knowledge that those who had attended the course were taking away ideas which would make a difference.
One slightly worrying note: we had some spare cookies and suggested to one of the youth leaders that they might like to invite the young people to decorate them. The strong negative reaction of the young people - hands over the ears and the assertion that it is awful to talk about death - led to a very fruitful discussion between us and the leaders about how the subject might be broached with young people.
Our final conclusions: death is universal, grief is individual, and the problems we have in opening the subject and giving people permission to talk exist in exactly the same way over the pond. But as in England, given an environment in which it is safe to talk, people relish the chance to do so, and have as much need to be open and honest about pent-up feelings. We really felt that the week had made a difference to the course members. It certainly has done to us.
"They didn't tell us Neil was dying": how poor communication from doctors negatively impacted Tony's son's death
"Our work validates Neil's life": why Tony and Dorothy have become end of life care champions
"No, you can't speak to him, he's dead": the frustrations of bureaucracy following a death