"It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgement and control."
Starting the Conversation: Death Cafe debuts in Burlington.
Tell someone you’re headed to a Death Café and no doubt their expression morphs into something between bewilderment and abject horror.
Odd words to toss together, and the name conjures up all sorts of somber, gloomy thoughts.
But Death Cafes are not morbid, depressing places, nor are they gathering spots for zombies. ‘Patrons’ don’t dress in black or ghoulishly discuss death while sipping tea.
Death Cafes are, in fact, respectful spaces where people of all ages can congregate to chat informally, often with complete strangers, about death and dying.
And who would choose to do that?
As it turns out, quite a few people; enough so, that there was a waiting list for the first ever Burlington Death Café last week at city hall.
The “very brave souls” and “trailblazers” - as organizers called attendees - ranged in age from their 40s to 80s.
Death Cafes are based on an “international movement” that originated in the UK and they are designed to begin a conversation about an uncomfortable, often taboo, subject – death.
There is no agenda or objectives at Death Cafes,” explained Roxanne Torbiak, of The End Game, which partnered with Carpenter Hospice to present the event. (Originally scheduled for the grounds outside city hall but moved indoors because of sweltering temperatures)
“It is simply a conversation that happens over coffee, tea and cake. Interesting conversation and laughter is guaranteed,” she said.
Among participants at the local Death Café were those whose professions routinely deal with death, but there were others from all walks of life and faiths who simply wanted to share and listen, people who felt the initiative an important conduit in opening up a very important discussion in the city.
“It’s really an introduction to the community. We want to create awareness and offer safe spaces for people to come together and talk about dying and death,” said C. Elizabeth Dougherty, a hospice palliative care social worker and educator.
“We want to reach out to everyone, all ages, and normalize it for people, whether they’ve been diagnosed with a life-limiting illness or whether they’re living healthy, fruitful lives.
“We want to create safe spaces for people to come together, to talk about their fears, their questions, their concerns, share their experience and really normalize this conversation.”
In their respective jobs as minister and palliative care consultant, Joel Bootsma and Villy Simonetta are all too familiar with death.
“Some people are very grounded in faith and meet it with courage, even joy; some with fear or worry,” said Bootsma, a Christian Reform Church minister, who was “interested in finding out what the community is wrestling with over this issue.”
As witness to extremes in how people deal with dying and death, Simonetta loves the idea of taking that fear out of death.
“It is part of life. It’s a beautiful experience when we’re born and as we go through the journey of life, it’s something we’re facing so let’s face it the best way we can, spiritually, (and) with love (and) compassion,” said Simonetta.
“I’ve seen some incredibly beautiful experiences where families are prepared; they’re very spiritual and it’s an intimate bonding time. Whereas some families struggle so much, they don’t want to let go and I struggle with that too because I see their struggle. You’re trying to support them in that whole process.”
In Buddhism, it’s about making death peaceful and quiet so one can let go of this world easily, commented Deborah Klassen, centre director of a Tibetan Buddhist Centre.
Participant Ann Dion was “privileged” to have been present for her husband’s, mother’s and mother-in-law’s death and
she feels strongly that the topic needs to be open and shared.
“We can’t be frightened because it’s there, it’s not going away,” said Dion. “(It’s like) If you don’t talk about it, it’s not going to happen.”
The Death Café was a natural supplement to Carpenter Hospice’s new Compassionate City Charter, said Bonnie Tompkins, Carpenter’s community health coordinator,
The hospice has based its charter on a UK model, and worked closely with the city to create “a framework of 12 social changes” to put Burlington on the path towards being a more compassionate city, said Tompkins.
“It’s all about building capacity in the community to support people because the reality is, the population is aging and the medical system can only do so much,” said Tompkins.
Many people don’t realize that healthcare professionals aren’t given training and education on dying and death and how to care beyond the medical model, or how to have those intimate, essential conversations about the psychosocial impacts of dying and death, said Dougherty.
“It’s about encouraging and empowering people to have these conversations with their families, friends and healthcare providers about advanced care planning, and their values and wishes for end of life care, said Dougherty, who co-founded The End Game, with Torbiak to provide professionally facilitated education and training sessions to normalize living and dying.
There is the demystifying piece to the movement, but the charter is also about embedding with community organizations to build bridges and links, said Tompkins.
“These conversations are so timely too because we know that only 16-30 per cent of Canadians actually have access to hospice palliative care services, so certainly funding and access is a concern,” said Dougherty.
Thankfully, she added, the quality of living and dying is on the national landscape, so it’s an especially important time to have these conversations, to raise awareness, and build a groundswell of public support.
Both Tompkins, who was sole caregiver for her terminally ill partner, and Dougherty, who has been immersed in palliative care for 17 years, said their experiences have taught them that open communication with loved ones is critical.
“Families are incredibly conflicted and very much wanting to be open and honest with each other, but the fear of not knowing what to say, or how to say it, or just the worry about the sadness. …denial is an incredible coping strategy for many people,” said Dougherty.
“The families I see that manage best certainly are those that have those open conversations, admittedly difficult conversations. It’s ok to be sad, it’s okay to be angry, it’s okay to be frustrated but it’s important to share what’s on your mind,” said Dougherty.
Last week marked the first Death Café in Burlington, but it’s certainly not the last, said Dougherty.
At the launch of the Compassionate City Charter this fall, organizers hope to have two simultaneous Death Cafes on Oct. 8, which happens to be World Hospice Palliative Care Day.
“We’re just getting started; we’re starting a revolution,” smiled Dougherty.
If You’re Grieving, You’re Not Alone. Here Are 15 Stories That May Help.
“There is no schedule for when you should feel certain emotions, or be over others. Choose to stand up for you and the rest of your life, and choose to move on. You don’t have to figure out how you’re going to get through the rest of your life. Just focus on staying in the game and moving forward now. It is normal to cry and be depressed, but you need to keep putting one foot in front of the other.”
The Quiet Blessing of Grief That Never Ends
“If you’re feeling sorry for me, please, don’t. During the hours I was tossed by this unanticipated wave of sorrow, I knew I could tolerate my sadness. Time has taught me that these waves come — and then go.
Perhaps more surprising, even as I lay curled in a soggy heap, I felt grateful for this wallop of forever-after grief. It provided reassurance that my sister hasn’t faded to a beloved, but distant, memory. Instead, for those hours, Pooz was once again a vivid presence in my mind and heart. There was pain, yes, but there was also the solace of knowing that she is still very much with me.
I count that as a blessing. Amen.”
How To Support A Young Person Through Grief
“This early interaction with death is overwhelming, but a pivotal point for learning. This grief acts as a blueprint for not just how these young people process death, but their approach to the many challenges they will face in life.
If you are struggling to help a teenager with their grief, know that your concern is evidence of your care. There is nothing that can make this not awful, so don't make your aim to stop the tears, but rather to support them in what they need. Respecting their needs shows them that you believe in their ability to know what's best for themselves. You're doing good.”
Camp Erin Hamilton. Fun #Camp for #Children and #Youth with #Grief #Support and #Education @moyerfoundation
“Camp Erin Hamilton is an annual three-day camp experience offered at no charge and facilitated by professional staff and trained volunteers of the Dr. Bob Kemp Hospice and Bereaved Families of Ontario - Hamilton/ Burlington. The camp is for children ages 6 to 17 who have experienced the death of someone close to them. Camp Erin Hamilton combines a traditional, high-energy, fun camp with grief support and education.”
Wonderful #Books that #Help #Children #Grieve and Make Sense of #Death @brainpickings #hpm
“From Japanese pop-up magic to Scandinavian storytelling to Maurice Sendak, a gentle primer on the messiness of mourning and the many faces and phases of grief.”
#Grieving When You’re an #Introvert
"The process of mourning and grieving is hard for everyone, but there are elements of the losing a loved one than can feel especially difficult when you’re an introvert.
As an introvert myself, when I was mourning the death of my parents, so many of the traditional parts of the mourning process felt very invasive to me. For instance, people coming over to my house after the funeral. I had just been taking care of ailing parents and planning a funeral and now I have to have people over? I know that everyone meant well, but having people in my home, some of them I barely knew, felt very unsettling. And then came the inevitable questions, are you going to sell the house, are going to move and what are going to do now?"
MyGrief.ca helps you to understand and work through your #Grief. @VirtualHospice
"MyGrief.ca Because losing someone is hard. MyGrief.ca helps you to understand and work through your grief.
- Confidential
- Access in the privacy of your own home
- Developed by families and grief experts
- Stories from people who have "been there"
- A resource for professionals"
Important Conversations with Experts in the Field about #Dying and #Death. #hpm
Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.
#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice
"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."
#Dying is Inevitable. #Living is Not. "#Love is Stonger Than #Death" Rest in Awesome Esther.
"Wayne Earl reveals the power of living and loving life by sharing the wisdom of his daughter, Esther Earl, who lost her battle with cancer just before her 16th birthday. Esther's courage, positive spirit and hope for the future transformed all who knew her. She showed the world what it meant to live life before death (via her well known vlogs and blogs) and that love is the engine of life. Esther Earl shared her spark of possibility with great generosity and was the inspiration for author John Green's #1 New York Times bestseller, The Fault In our Stars.
Wayne Earl recently authored the compelling life story of his daughter, Esther Grace, who succumbed to cancer shortly before her 16th birthday. Before she died, a deepening friendship with her favorite author, John Green, greatly encouraged her. The friendship also inspired Mr. Green, most notably in his writing of the world- renowned novel, The Fault in Our Stars, which he dedicated to Esther. The Earl Family founded the non-profit organization, This Star Won't Go Out, to help ease the financial burdens of families caring for children with cancer."
The Unexpected #Grief Of The Unknowing
"Through all my self-doubt, and the grief I still experience, I am comforted knowing my mom knew my heart. She understood (more than I could have at the time) how typical, though ill-timed, my behavior was. Nothing changes a mother’s love."
How We #Grieve: the Messiness of #Mourning and Learning to Live with #Loss. @meghanor
“It’s not a question of getting over it or healing. No; it’s a question of learning to live with this transformation. For the loss is transformative, in good ways and bad, a tangle of change that cannot be threaded into the usual narrative spools. It is too central for that. It’s not an emergence from the cocoon, but a tree growing around an obstruction.”
A #Daughter Pays Homage to Her #Parents With an Intimate Look at #Love and #Loss. @nancyborowick #hpm
"One can only truly understand and appreciate life when faced with one’s own mortality. Nobody wants to talk about death, but it is one of the only things that is certain in life, so an awareness of this finitude allowed my family to take advantage of the time we had left together. “Cancer Family, Ongoing” is the story of family, looking at the experiences of two parents who were in parallel treatment for stage four cancer, side by side. The project looks at love and life in the face of death. It honors my parents’ memory by focusing on their strength and love, both individually and together, and shares the story of their final chapters, which came to a close just 364 days apart from one another."
Surrounded by #pain, #doctors turn to poetry, writing to #cope with #loss
"The genre has blossomed as doctors have become more comfortable acknowledging their humanity and vulnerability through prose, said Dr. Paul Gross, the founder and editor in chief of the online journal Pulse, which carries the tagline 'voices from the heart of medicine.'
Doctors deal with so many difficult situations each day, Gross said. “How do you process it? And how do you remain whole as a person?” Writing helps them work through those issues by forcing reflection..."
The "On Coming Alive" Project. #Grief. @lexibehrndt #oncomingalive
"We believe that we are meant to come alive. This doesn’t mean we’ll be without pain. This means that we’ll face the pain, looking it in the eye, feeling it, acknowledging it, never faking it, but embracing life for what it is, a coexistence of the deepest sorrows and the deepest joys. We want to be alive to feel both, because we know that if we hide from the pain, we often also hide from true, deep joy, from freedom, from love and life.
We believe that we come alive as we mend, but we also come alive when we reach up and reach out.
We want to dig down deep and muster the grit within us, reach out our hands, and pull one another to the light, because we don’t believe that we’re meant to always live in the darkness."
#Death and the #Workplace. @GroundSwellAus
"We know that most of us don’t grieve in stages. In fact, we experience resilience. To use George Bonnano’s research, for most of us grief is an up and down experience with capacity for both intense positive and negative emotion. This is normal and expected. And perhaps most importantly, we know that being part of a network of colleagues (as well as friends and family) who take part in the caring process, has a transformative effect. Not just for those of us who are experiencing great loss, but also for the people who work with and care for us."
Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on #Loss and #Life. @brainpickings
"Now comes a fine addition to the most intelligent and imaginative children’s books about making sense of death — the crowning jewel of them all, even, and not only because it bears what might be the most beautiful children’s book title ever conceived: Cry, Heart, But Never Break (public library) by beloved Danish children’s book author Glenn Ringtved and illustrator Charlotte Pardi, translated into English by Robert Moulthrop.
Although Ringtved is celebrated for his humorous and mischievous stories, this contemplative tale sprang from the depths of his own experience — when his mother was dying and he struggled to explain what was happening to his young children, she offered some words of comfort: “Cry, Heart, but never break.” It was the grandmother’s way of assuring the children that the profound sadness of loss is to be allowed rather than resisted, then folded into the wholeness of life, which continues to unfold".
They Brought Cookies: For A New Widow, Empathy Eases Death's Pain
"So I'll tell you the positive effect and you know it already: empathy is pain's best antidote. It is, says Robert Burton in his astonishing Anatomy of Melancholy, 'as fire in Winter, shade in Summer, as sleep on the grass to them that are weary, meat and drink to him that is hungry or athirst.'
The pain doesn't go away; but somehow or other, empathy gives the pain meaning, and pain-with-meaning is bearable. I don't actually know how to say what the effect of empathy is, I can only say what it's like. Like magic".