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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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pastoral-care-workshop-katherine-arnup

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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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Despite my best intentions, I didn’t manage to post anything new in December. Lest you think I was lost in a shopping mall or drowning my sorrows in red wine, I can assure you I was enjoying my favourite pastimes – a trip on a train with my partner, daughter, and granddaughter to see a friend’s photo show in Toronto (and visit the aquarium with my younger daughter and her partner); precious time with friends;  a drum-making workshop wherein I actually managed to make a real drum; Tuesday afternoons at the hospice; being silly with my grandchildren; watching non-seasonal programs on Netflix; completing an end-of year reflection.

I suspect this brand new year will see me engaged in many of the same activities – and hopefully some I’ve never undertaken before. Passing that magic marker of 65 seems to have given me permission to be as zany and silly and experimental as I want (although my granddaughter regularly chastises me with “Don’t be silly Granny!”) I can talk with strangers at Starbucks and on the street, without fearing that my daughters will accuse me of “over-sharing.” I can sing as often and as loudly as I wish in my house – accompanied by my ukulele if I want! And of course, when the spirit moves me, I can write.

I’m hoping to write regularly again, having spend the past few months marketing my book. In this new year, I want to continue to give talks on caregiving, aging, death, and dying – and hopefully to travel with the book. But I’ll also return to my desk on a more regular basis, to blog, to write articles on subjects close to my heart, and, perhaps, to work on another book.

I hope that the new year brings much joy, caring, and compassion to all of you. I look forward to connecting with you in 2016.

 

 

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I can’t help sharing my excitement! My book on caring for our parents is done and available on Amazon.com.
http://amzn.com/0994007809

I hope it will be up on Amazon.ca, Chapters etc. soon.
Meanwhile, if you live in Ottawa, you can buy the book directly from me!
Katherine

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Last Days

Today is my last full day at the Virginia Center for the Creative Arts, the amazing retreat centre where I’ve spent the past four and a half weeks. Today is misty, the mountains shrouded in haze, and every single leaf and blade of grass seems to be holding into a drop of dew as if for dear life (and perhaps that’s true since it’s been very dry here, with daily fire warnings from the Weather Service!).

The land on which we are situated is owned by Sweet Briar College – a century old women’s college just across the highway, on hundreds of acres of woods. Many of us fellows (as we are called, to my amusement) head over to Sweet Briar to use the pool and gym, run on the grounds, and enjoy the newly renovated library. A week before I came here, the college President announced that the college would be closing in August, this year’s senior class being the last to graduate. The news hit everyone – students, faculty, staff, townsfolk who depend on the college for income, and VCCA staff and fellows – very hard. Though there is a spirited campaign to save the college (whose motto when I first came here was “Think Pink”) and law suits have been filed by several groups and individuals. The timing of the announcement, however, means that most students are scrambling to find a place to study next year, and faculty and staff (some of whom own houses on the property) are trying to figure out what to do as their lives have been completely upended.

As I walked around the campus yesterday, I had the distinct feeling that I had unintentionally walked into a funeral where I didn’t belong. The campus was nearly deserted, though classes are still going on. The bookstore’s shelves are almost empty, the woman on the cash – an alumna – reflecting the sadness felt throughout the college. “It’s a very sad time,” she said to me in her lilting Virginia accent. An ending. Last days. And uncertainty beyond.

And here, at VCCA, almost every day brings a departure or two or more. Unlike some residencies, VCCA staggers its fellows’ times, so that, although there are always around 25 people here, there are constant comings and goings. For an introvert like me, that represents something of a challenge. Though I could just keep my head down and ignore the changes, I’ve come here determined to learn people’s names, what their art form is, where they are from. (I cheat a little, as we have a “crib sheet” with names, room and studio numbers, and dates of residency. I annotate it will little scribbles to remind me of who each person is!) As a result, I have formed friendships, connections, with many people since I arrived on March 10th, a month ago. Emails are exchanged, promises to keep in touch are made, hugs all around, day after day.

We all share the bond of our work – our commitment to putting our art first in our lives, if only for these days and weeks while we are here. Though we may never talk about the specifics of our work, I am inspired by the determination, long hours, and faith that each person demonstrates – be it composer, sculptor, painter, poet, novelist, or non-fiction writer. We remind one another that what we do matters – even if no one in the outside world knows about it!

Two days ago, two boxes of my book arrived! “I don’t have time for this!” has a form, substance, a shiny cover! Yesterday, on my sister Carol’s birthday, I sent out a dozen copies, each one with a thank you note, to the people who had written testimonials for the book. It seemed fitting that it should be Carol’s “special day” since my time with her when she was dying was when all this writing, hospice volunteering, and speaking and thinking about death and dying began.

And so, on this last day here at VCCA, as I prepare to take the pages of writing and photographs down from the walls, gather together my piles of stories from the floor and every available surface, I’m thinking about last days in our lives. We have many leave takings, many last days, before the final one. On an ordinary day, I might have walked towards my studio with blinkers on, not noticing the dew drops hanging from the buds on the vine. I might not have lingered at breakfast, talking with a recent arrival – who, it turns out, lost her sister 15 years ago, and who asked to buy my book for herself and her 91-year old mother. Knowing I am leaving sharpens my attention, even as it widens my focus. This very moment. Then this very moment. Breathing.

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My involvement in hospice work began as a result of caring for my sister during the final six months of her life. She died of metastatic melanoma in 1997 – at the time there were no hospices, no pain and symptom management teams or palliative doctors who made house calls. The only palliative care available was a new section in the hospital, established in the veteran’s wing, and my sister wanted nothing to do with it. We did our best with what we knew and with what resources we had and although, in the end, she wasn’t able to die at home, her death in the hospital was peaceful and I was able to be at her side, holding her hand and singing quietly.

“You’re going to be an expert at this by the time you’re done with me,” my sister joked, a few weeks before she died.

“Maybe,” I said, “but I don’t want to learn it from you!”

We both laughed, knowing that this was precisely what was happening.

Four years after her death, I began to volunteer at a residential hospice near my home. For four hours a week, I cared for people of all ages, helping to bathe them and ensure that they were comfortable, reading a book, newspaper, and sometimes the Bible (once I was asked to read Jean Paul Sartre in French, another time, a collection of German poetry in German!). I made meals, countless cups of coffee, and pots of tea. I pushed patients outside for a cigarette, and once or twice lit a cigarette when the person was too shaky to do so himself. And always, my sister was there with me, guiding me in what to say, and reminding me to slow down, and sit quietly.

I kept working at the hospice after my father was diagnosed with a terminal illness and during the two  years until his death at 94. Often it felt comforting to care for an elderly man who would relax his head into my hands in a way I knew my own father, living 4 hours away, would never do. I would talk with patients about their fears and their loves, their dreams, and sometimes their regrets, in a way that my father, a reserved and largely unemotional man would never do (at least not with me!) Though I visited him frequently during those two years, we talked only once about how he felt about dying, and then only for a (miraculous) few minutes. Perhaps he talked with others, his minister, a friend from Church, his doctor, just as the hospice patients talked with me. It felt right, somehow, that I could bring this gift my sister had given me to other people’s families.

When my mother was diagnosed with terminal lung cancer two weeks after my father’s death, I thought I couldn’t bear another dying so soon after losing my father. Still, what choice does one have but to find the courage, the time, the strength within. For me, my hospice work once again sustained me, centred me, supporting me during those 14 months until my mother’s death. Sometimes it felt right that I could care for other mothers as my mother’s caregivers cared for her.

We all face the loss of our parents, sometimes swiftly, early in our lives. Sometimes slowly, late in life, as with my father. It is never simple. It is never a matter of “a good age to die.” I miss my parents being in this world, and I think of them often, when I am at hospice caring for older patients, when I am writing, when something wonderful happens in my life (the birth of my first granddaughter!) or when I face a difficult decision. They too are with me – and I’m proud of how I cared for them and for my sister, as best I could. In the end, doing the best we can, giving what we can, having as few regrets as we can is what matters most.

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