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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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It’s 2017, so they tell me, though I have been laid up in bed since late December with a nasty virus, and have trouble remembering which day of the week it is.

In a few days it will be 20 years since my sister Carol was diagnosed with the virulent cancer that would take her life 6 months later, on July 4, 1997. I had just begun a well deserved and much needed sabbatical and was busy making plans for a research trip when my sister called to say that the cancer was back.

“Fuck, Fuck, FUCK,” I said, when she told me.

“Don’t say that,” she said.

“But it’s just not fair! You’ve done so well! Fuck, fuck, fuck,” I said again, the only words that seemed to capture the extent of my anger and grief and shock.

“Don’t say that,” she said. “It just makes it harder for me.”

“OK,” I agreed. “I’ll be on the first train tomorrow to see you.”

And so it began. The 6 month “journey” in cancerland – through endless visits to doctors and hospitals, CT scans and MRIs, biopsies, and surgery. Vomiting and K-basins. Fear. And always pain. And finally death.

So many of the details of those six months are still vivid in my mind and my heart. The endless waiting for results, the parade of PSWs and “sitters.” Dozens upon dozens of phone calls on pay phones, in the days long before cell phones. And countless conversations with Carol about what she wanted and needed. I would have done anything I could have for her. And in the end it was never enough.

Shortly after she died, I began to tell people that I had been transformed by Carol’s death. I didn’t really know what it meant, but I knew it was true. I was no longer running away from death. Four years later, I would begin what became my 15 year journey as a hospice volunteer. “My sister works through me,” I would tell friends when I first began my volunteer work with dying people and their families. Sometimes I could almost hear her telling me, “Slow down. There’s nothing you have to do. Just listen to their stories.” And I did.

And I still do, all these 20 years later. I also write and talk and speak at conferences and churches and meeting halls. I look for opportunities to share my book about caring for my sister and my elderly parents, in hopes that I can help others who are facing this challenging time in their lives.

When I first began volunteering at hospice, friends would look at me strangely as I would wax eloquent about my volunteering. Some thought it morbid, others that I was courting depression in being with dying people week after week. Few would believe me when I told them my time at hospice was the most hopeful part of my week.

More often now, people ask me what I do at hospice – what it’s like giving care to dying people, and talking with their families. More and more, of course, friends and strangers alike have experienced the death of someone they love. Or they are watching their aging parents coming to terms with their loss of independence and failing health. Perhaps they have received a difficult diagnosis themselves. Now they too want to talk about death and dying.

And so I will continue to write, here and elsewhere, about life and death. I’ll read the latest books on the subject from the library, and watch movies about “d and d.” I’ll continue to give talks wherever I can,  and I’ll look forward to hearing other people’s stories.

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Before I start this post, I want to share with you an amazing podcast from the BBC that I came across recently. Here’s the link:

We need to talk about death

You can listen to it on your computer, or download the podcast and keep up with all the episodes as they are posted. There are two at the moment and they are truly wonderful. The instigator and narrator is a wonderful British woman in her 80s. She’s gathered a small panel of “experts” – people who have thought a great deal about death during their lives. The first episode talks about the importance of facing our fears of death and dying. The second focusses on pain. I wish I could sit down with all of you and listen to it together – and then talk about our own thoughts, feelings, and reactions. We seem to have so few places to talk about such things.

If you’re a regular reader of this blog, you’ve probably noticed that I haven’t posted in nearly two months. I could tell you that I’ve been busy, that life’s gotten in the way, that I’ve been working hard on other things, and, while all that would be true, it’s not the real reason I’ve been silent.

The real reason is because I’ve been struggling to find the meaning in the work I am doing as a hospice volunteer. It’s not that I’ve lost the calling. That’s something I’ve felt since I first walked into the hospice where I still volunteer. It’s something I’ve known since my sister told me “You’re going to be an expert at this by the time you’re done with me,” shortly before she died. While I certainly didn’t want to learn how to be with dying from my sister, she was, as always, an excellent teacher.

I feel honoured to be able to help dying people and their families. I treasure the conversations we have had over the past 15 years – and I hold deep within my heart the memory of the people with whom I’ve sat as they took their last breath.

But increasingly – slowly over time and, of late, more frequently – I’ve found myself confronted with more and more rules and restrictions, tasks and prohibitions. Seldom do I seem to have the time to sit with someone who is dying. Or to retreat to the sun room to have a chat with a family member who is having a hard time. Instead, I’m in the kitchen, loading the dishwasher (or waiting for it to be finished!), rushing to answer the phone or fix someone’s lunch.

I have never minded the quotidian tasks that are part and parcel of volunteering – I’ve become quite the expert at making jello, grilled cheese sandwiches, scrambled eggs (though not poached, after all these years). Those things have been part and parcel of the services we do. My struggle has been that we are faced with an increasing number of rules about how things must be done and what we must do to the point where I wonder if “being with dying” is actually part of our “job.”

Perhaps you’ll think I’m complaining – or being unrealistic about the degree to which organizations must change when they advance from their “pioneering phase.” But when I listen to people talk as they do on the BBC program mentioned above, I am reminded once again of the reason why I became a hospice volunteer – and I mourn what seems lost in the process of  growing, consolidating, and institutionalizing.

From my casual conversations during shift changes and with friends, I know I’m not alone in these feelings. I wonder if any of you readers out there might feel the same.

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An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:

http://www.kevinmd.com/blog/2016/09/helping-hospice-present-much-important-busy.html

As always, I’d love to hear your thoughts.

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How do we keep volunteers happy? At the core of that question is a bigger issue for non-profit organizations that are increasingly relying on volunteers to perform a range of essential functions: how do we keep volunteers volunteering?

Today I ran across a series of articles online and I thought I’d share the link before offering a few thoughts of my own.

http://nonprofit.about.com/od/volunteers/a/14-Creative-Ways-To-Thank-Volunteers.htm

This week I applied to volunteer to read with primary students with the local Board of Education. My experience offered some lessons in how to encourage would-be volunteers. First, I completed the on-line application, indicating my background, education, volunteer experience, and reasons why I want to volunteer. As I typed in my degrees, experience as a primary school teacher, and long history as a volunteer, I wondered what the reviewers might think. Overqualified? Embellishing? I added the names of two referees (one of whom could be related, the form said), including a dear hospice friend and my eldest daughter, whose wonderful children I now joyfully care for on a regular basis.

Within five minutes of submitting the form, I received a phone call from someone at the organization in charge of volunteers. We had a lovely conversation about reading, my experiences, and my hopes for volunteering. When I indicated that I didn’t want to volunteer in my own neighbourhood (they don’t need me here, I explained), she was pleasantly surprised to say the least, and suggested a number of inner city school that might work for me.

Next step was to apply for my police record check. Although I’ve completed at least two of these during my volunteer history, an up-to-date record is required for each new volunteer, so I headed off to the police records station to complete my application. The waiting room was full with every chair taken when I arrived and dutifully took my number. Only 22 people ahead of me apparently in the A list of applicants. By the time my number was called, the room had nearly emptied, and I expectantly approached the wicket to submit my forms.

“There’s a wait of 6 to 8 weeks,” the person at the wicket informed me.

“There must be a lot of people wanting to volunteer!” I replied, a little shocked.

Of course, people also need a record check for internships, co-op placements, and jobs with vulnerable populations. Still I am sure there are many new volunteers at this time of year, as people make their post-summer plans. I felt happy to be taking part in the process shared my so many of my fellow Canadians.

Assuming all goes well, come October I’ll be happily spending an hour or two each week, introducing the joy of reading to some new little friends. I’ll keep you posted!

As a post-script, when I told my 5 year old granddaughter that I was applying to be a volunteer reader, she looked very sad. “But then you won’t be seeing me on Wednesdays any more!” I assured her that I would never give up our Wednesday library and dinner visits. “I just love reading so much, I want to share it with other little kids.” She seemed reassured, especially after I read her all 6 Spot books in our collection.

 

 

 

 

 

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I’m finally back at my desk, after nearly a month in Provincetown where I’ve been writing, reading, walking, and pondering up a storm. My favourite activities – along with eating fabulous fresh seafood, meeting people from all over the world and talking about the things that matter to them. Provincetown seems to encourage both introspection and an ability to dream that makes for amazing conversations and I miss those whenever I come back home.

Lots happened while I was away. Medical Aid in Dying became the law of the land in Canada, after some back-and-forthing between the House of Commons and the Senate. Forty-nine people were murdered in a gay club in Orlando – an event that I have written and thought about a great deal in the weeks since. Donald Trump became the presumptive nominee for the Republican Party and his hateful rhetoric filled the airwaves in deeply disturbing ways. Britain voted to leave the European Union (an even that was decidedly interesting from south of the border as Americans tried to make sense of the impact of Brexit would be on them). The President of the United States visited Ottawa while I was south of the border as well – with scarcely a mention in the US press.

And finally, I turn my attention to hospice volunteering following my first shift in nearly a month. As I have written many times, each time I return after an absence I am reminded of the importance of having a “beginner’s mind.” Indeed, I am forced to remember because I know none of the residents who are at the hospice. Thus, I can’t fall into the trap of thinking that I know what they will be eating, how they will be feeling, who will be visiting and so on. I have to approach each person with fresh eyes and an open mind. And in so doing, I am able to be fully present with each one.

I’ll admit that I find it tiring, both mentally and emotionally, as I try to keep track of the new (to me) patients and their family members, while allowing myself to feel fully the circumstances they are in. The sadness, the loss, the impending deaths of mothers and fathers, sisters, brothers, daughters and sons. These are not my losses, of course, but they affect me, perhaps more so because I have been away.

And so, once again, I find myself wondering how we take care of ourselves and support one another in the face of so much loss and sadness. I don’t want to suggest that I am overwhelmed by my volunteering – I’m not. Over the years I’ve been at hospice, I have developed many mechanisms to help me. I write, I spend time alone to let the feelings sink in, I walk by the river, sometimes I talk (in extreme generalities of course) about what I’ve experienced.

Next week when I return to hospice, it is likely that two or three people I’ve met this week will have died. And while I go about getting to know the new people – and getting their lunch and helping to reposition them, and bringing them ice chips – I will silently bow to the ones who have died and honour their memory.

How do we support one another in this amazing and rewarding work that we do? It has always been my hope that this blog can serve that role in some small way – by letting other volunteers know that they are not alone in their experiences. For those of us who work in residential hospices, debriefing with your “replacement” at the end of your shift can be helpful. I will often take the time to check in with the receptionist on the front desk to see how she’s doing, and to tell her how much I appreciate the essential role she plays.

I’d love to hear from others about how they support themselves and their fellow volunteers. Meanwhile, I just want to bow to all of the volunteers who are reading this blog (I am a Buddhist, after all) for the wonderful work that they do.

 

 

 

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In the past few weeks, I have sat with a number of patients as they were dying. As a hospice volunteer, one of my most important roles is to be with people nearing the end of their lives to ensure that no one dies alone. The experience is humbling, deeply moving, and a poignant reminder of the circle of life. Each time I watch someone take their last breath, I am struck by the mystery of life and death – breath and finally no breath. Ever again.

I don’t know who I would be today if I had not cared for my sister when she was dying. If I had not sat with her as she took her last breath, I doubt I would now have the wisdom and equanimity to sit with dying people today. If I had not cared for my sister, I might still be pretending that I could somehow avoid dying – both myself and the people I love. I might still be racing from meeting to meeting, barely stopping to notice what was happening right in front of me. I might still be steering a wide berth around people who had lost someone close to them, lest I somehow “catch” death myself.

These days, I spend time following the debates in the House of Commons on what is now termed Medical Aid in Dying. Whatever happens in the Senate in the coming days, Bill C-14 will soon be the law of the land. People will be able to request and receive medical aid in dying.

Yet, the fact is that people have been receiving medical aid in dying for centuries. Medications have helped to ease pain and suffering and to reduce the symptoms that are part of the dying process. In that past few decades, hospice palliative care has made enormous strides in easing such suffering. New drugs and treatments, the practice of titrating the dosage so that the patient can live pain-free and alert for as long as possible – all of these methods are form of medical aid in dying. The presence of compassionate and caring staff and volunteers might be termed non-medical aid in dying. We accompany and help people in this final passage in life.

When I sit with a patient who is dying, when I see a family surrounding their beloved parent, I feel that I am part of the mystery and the miracle of life. Like the births I have witnessed and experienced, these deaths too are an integral part of life.

I hope that, whatever form the final legislation takes, we do not lose sight of these fundamental truths.

 

 

 

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