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My last post – a death in the family – has had an amazing ride over the past five days! After I posted it on Facebook, I tried to “boost” it to reach more people and for some bizarre reason, FB deemed it to be unsuitable, objectionable content – they refused the ad and removed the message from Facebook! Magically, it reappeared a day later (perhaps because I appealed, though I doubt it!) And since then, an amazing number of people have read the post about my aunt’s last days. I am enormously gratified by the response and so glad my story reached so many people. Thanks to all of you!

It’s been a busy week, because this is National Hospice Palliative Care week. I participated on a webinar for the Canadian Hospice Palliative Care Association on living well, right to the end. Here’s the link to the show (I’m the first speaker, right after the introduction). I hope you enjoy it!

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Last weekend I had the privilege of accompanying my aunt on the final days of her life. Long burdened with Alzheimer’s disease,  Aunt Ruth turned 94 on Friday, accompanied by a staff member who had stayed late Thursday night so she could be the first to wish her a happy birthday. On Saturday night at 11 p.m. she took her last breath, with another staff member by her side.

One of the longest residents of Fenelon Court, the long term care residence where she spent the final years of her life, Ruth was loved by the staff, who called her Ruthie, her childhood name I had only heard in family stories. She was the youngest of my father’s five siblings and the last to leave. She was spunky, spirited, outspoken, generous, and loving.

When we arrived from Ottawa on Friday, she was somnolent, no longer responding to visitors or staff. I had brought my ukulele with me on the trip, and knowing that hearing is the last sense to leave, I set myself up by her bedside and began to play. Whether she could hear me I’ll never know, but I like to think that the music of Leonard Cohen (Hallelujah) and the gentle words of The Water is Wide provided her with comfort on her journey.

As I played, staff came in and out of the room to check on Ruth, and to offer drinks or food to me. Each time they entered, I was struck by their gentle caring and familiarity with “Ruthie.”

“She’ll do it in her own time,” one nurse commented. “You always have, haven’t you Ruthie.”

On Saturday we spent much of the day with Ruth, giving my eldest sister a much-needed respite from the long days she had been spending by her side. Once again, I sang, shared birthday cards and stories with Ruth, reminders of the love that surrounded her. When we finally went back to our hotel at 9, one of the nurses reassured us that she would sit with Ruth. She remained at her side until she died.

The next morning we returned with my sister Judy to begin cleaning our Ruth’s room. Ruth’s body was still there, and I was glad for my years of hospice volunteering that helped it seemed perfectly natural. As I remarked on the volume of clothes in her closet, I couldn’t help but notice their beautiful condition – another tribute to the careful attention of the staff.

As we prepared to walk out with the people from the funeral home, a staff member lay a quilt over her body, and as we walked slowly to the front door, staff members throughout the building lined the halls, a gesture of respect I recognized from my own hospice.

Though I am writing this post to honour Aunt Ruth, I am also honouring the amazing staff at Fenelon Court. When I knew she was in a long term care facility, I had an image of hallways filled with patients sleeping slumped over in wheelchairs, a certain smell permeating the building. I had witnessed these scenes in other long term care facilities, and I was dreading seeing my aunt in such a place.

Fenelon Court could not have been farther from those expectations! The building is bright and clean, the patients engaged in activities where possible, and attended to with care in every encounter I witness. “We are their family,” one nurse told me. “Often they have a son or daughter who rarely visits. We are here every day and we love them. They’re our family too.”

Perhaps it’s because the facility has only 67 residents – and it is designed in pods so each area is relatively small and contained. Perhaps it’s because it is located opposite an elementary school and children often visit the centre, sharing drawings, Easter activities, and joy with the residents. Perhaps it’s because it’s located in a small town, a place where community really matters. But I think there’s something more – something I can’t quite put into words – beyond respect, dignity, caring, and love. That’s what I experienced with my aunt last weekend. And for that I am enormously grateful.

Fenelon Court

fenelon_overview

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In the midst of a far-too rainy Spring, what better way to pass the time than to curl up with a good book? Of course, if are a regular reader of this blog, you’ll know that my taste in books, films, television programs,  and conversations does tend towards death and dying!

The New York Times has a lovely review of the new book by Jessica Zitter MD.  Dr. Zitter’s work has been featured on the New York Times and numerous other publications, and in the recent Oscar nominated Documentary short, Extremis.  Here’s the link to the film: https://www.netflix.com/search?q=extremis&jbv=80106307&jbp=0&jbr=0 (available on Netflix)

Check out this review, then read the book!

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This week I had the chance to attend a death café at a downtown restaurant/bar in Ottawa. For those who are not familiar with the concept, a death café is a gathering of people (generally strangers) who come together over tea and cake (or some variation on the theme – in this case, nachos and beer and wine!) to talk about death.

The idea originated with a Swiss anthropologist named Bernard Crettaz, who organized the first café mortel in 2004. The concept was picked up by Londoner Jon Underwood, who organized the first death café at his home in East Hackney in 2011. Since then 4366 Death Cafes in 37 countries (and counting) have been held, all of them loosely based around the idea of talking about all aspects of death and dying while sharing a cup of tea and cake. For further details see http://deathcafe.com/what/#sthash.drED13Sb.dpuf

Why would so many people choose to give up an afternoon or evening to talk about death? While I’m sure the reasons people attend are as individual as the people themselves, it’s safe to say that everyone is drawn to the cafe as a safe place to talk about death – something that, despite its inevitability, is still largely a taboo subject in much of the Western world.

One of the surprising things about the death cafés I’ve attended is the wide variation in the ages of the participants. While I expected to see many people of my own age and stage (at 67, someone who can see the sands of time slipping away with what seems like ever increasing speed!), both events I went to had a surprising number of young people (in their 20s and 30s).

I can’t speak for the motivations of everyone in attendance, as we are generally seated at a table of four or five for the duration of the event, and thus don’t have the chance to get to know everyone at the event. What I can say, from the discussions I’ve been part of, is that everyone has experienced death first hand (a grandmother, mother, sibling, close friend or a serious illness themselves), and they’ve longed for a safe place to talk about the experience.

At my first death cafe (an event with about 45 people),  I sat with a young mother of three who had lost both her parents at a very young age; an 84 year old woman who, though quite fit and hardy, was exploring the options for medical aid in dying (for when the time comes); and a man in his forties who seemed more driven by curiosity and theory than direct experience. And of course, I had lost both my parents and my sister, and was very involved in hospice work.

This week, I was invited to join a table of four people, three of whom I already knew from completely unrelated settings. We needed very little prompting to get us going – merely asking “What brought you to the death cafe today?” was fuel enough for a lively conversation that ranged from becoming involved in the funeral business to losing close family members.

We talked about our fears of death (whether we had them, how we had gotten over them, who we dealt with others’ fears), our hopes for the end of our lives, and how we felt about how society deals with death.

Sometimes we could barely hear each other, as the conversations at the other tables broke into gales of raucous laughter or heated discussions (or both!) I could hardly believe it when the organizer announced that it was 8 p.m. and time for us to go. We had been talking about death non-stop for an hour and a half. And I suspect we could have gone on much longer!

“How was it?” my partner asked, when she picked me up.

“Great,” I said, never quite sure what else to say. The conversations themselves are so fluid and intimate in ways one wouldn’t expect with a group of strangers. And somehow sacred.

When I think about what I love about events like death cafés (or dinners or salons) I think about how refreshing it is to be able to talk about death without having to whisper or worry about someone’s reaction or about being called morbid.

As someone who has volunteered in a hospice for over 15 years, talking about death and dying seems like the most natural thing in the world – and one of the most important. If we don’t talk about death – what it looks like, what we might want at the end of our lives, how we can care for the people we love, how we can change the face of dying in our culture – we remain powerless to influence our deaths.

How will others know what we want, if we can’t talk about it? How will we know what our loved ones want?

As one of my favourite phrases tells us, “Talking about death won’t kill you!”

Let’s talk!

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When I first started volunteering in a residential hospice 15 years ago, most people I encountered had never even heard of a hospice. When I told them it was a place that provided end of life care for dying patients and their families, they looked at me with a strange combination of horror and disbelief.

“You must be a saint!” people would say, stepping back slightly to avoid the glare from my halo. “I could NEVER do what you do,” they would add, though they actually had no idea what I did.

“Don’t you find it depressing?” was their closing question, perhaps their way of explaining why they could never take my place.

“Actually, it’s the most hopeful part of my week,” I would say, ready to offer an explanation to the questions that never came.

Fifteen years later, people are still a little surprised when I say I volunteer in a hospice. But instead of distancing themselves by putting me on a saintly pedestal, more often than not they ask me what exactly what a hospice volunteer does. They listen with interest as I describe a typical shift, which can involve everything from helping to give a bed bath to making poached eggs and toast, brewing pots of Tim Horton’s coffee, and listening to a grieving family member anticipating the loss of her sister.

Our work is both hands-on and open-hearted, I explain. I’m a short-order chief cook and bottle washer, a hand holder, and a singer of hymns. I’m a listener and a tour guide, a companion, and a witness. And I never know which among those roles I’ll play on any given day.

More often than not, people listen intently as I explain the nature of our work. While some still assure me that they could never do what I do, many say they might think of doing something like this, once they have the time.

I like to think that my being a hospice volunteer – and talking and writing about my work – is playing a small part in opening up discussions about death and dying in my community and beyond. Certainly I encounter more and more like-minded people on Facebook, at community gatherings, even at the movies. I believe that we are opening up essential conversations about how we want to live our lives and how we would like to approach our deaths.

As always, I’d love to hear what readers think about my writing here – I hope if you find it meaningful, you’ll share this blog with others, through your social media connections and elsewhere. I hope you’ll join me in these essential conversations about living and dying.

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Today is March 8th, International Women’s Day. So it seems appropriate to share this article about Dame Cicely Saunders, the founder of St. Christopher’s House in London and a pioneer in the modern hospice movement. Many people involved in hospice palliative care work in Canada and elsewhere were inspired by her work and her life. Dr. Balfour Mount (the Montreal physician who established the first palliative care unit and coined the term palliative care) and Dr. John Seely (a champion of palliative care in Ottawa and friend and colleague of Dr. Mount) both visited Cicely Saunders in London and saw first hand the importance of her work.

So today, I am grateful for Dame Cicely Saunders and the many many women who came before us, who paged the way for our work today, and shone a light on the possibilities of the future.

http://endoflifestudies.academicblogs.co.uk/celebrating-the-life-of-cicely-saunders-on-international-womens-day-by-david-clark/

 

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While the Hollywood image of dying often features a loving family gathering around the deathbed, life often presents a very different reality. In a chapter in my book – entitled “One Big Happy Family” – I talk about some of the challenges families may face at this difficult time. I often say that each of us, when the faced of a parent, becomes an exaggerated version of ourselves with both our best and worst characteristics showing up in spades. As well, conflicts that might have occurred decades before may resurface as siblings vie for attention and recognition.

End of Life University

What do you do when a family (your own or a patient’s) is crumbling due to unhealed resentments and irreconcilable differences? Find out now.

conflictpodcast

In today’s episode I’ll share my best tips for helping families move through conflict toward resolution during stressful times like the death of a loved one. I’ve had lots of experience with this work during my years as a hospice doctor so be prepared for a longer-than-usual episode!

Announcements:

slide01My new course Step-by-Step Roadmap for End-of-Life Planning is almost ready for release (just a few days away as I record this!) The course is simple yet comprehensive and will help you examine your mindset, values, beliefs, and fears about death before you make decisions about your end-of-life healthcare. Go to eoluniversity.com/roadmap to learn more and sign up to be notified as soon as the course is released.

Sponsorship:

supportonpatreon-e1412764908776This podcast is sponsored through the EOLU donation page…

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