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Posts Tagged ‘hospice’

A month and a half ago I wrote a blog post that I entitled “Hospice volunteers: the heart of hospice.” I didn’t invent the term – it’s one I’ve encountered countless times over the years in my research, interviews with volunteers, conversations with death professionals, and visits to residential hospices. The term doesn’t mean that volunteers are the only people who provide the heart in hospice care. Rather, it points to the unique role that volunteers can play – they are the only ones whose primary role is to simply be with dying people and their families – to listen, to sit in silence, to share a book or story, to sing a favourite song, to visit the garden.

It was that role that drew me to hospice volunteering almost 17 years ago. I can still vividly remember the evening I walked into the orientation meeting. The fact that the meeting took place on September 11, 2001 could have something to do with why that evening is etched in my mind (yes, that September 11!) but it’s also the feeling I had when I entered the building. Somehow I knew I had entered sacred space (not a term I normally used, as I described myself as the “least spiritual person I know”). But there was something about the building, the space, the people who worked there, that told me something very special was happening inside.

That feeling remained with me for many years, as I volunteered in the residence each week. Though sometimes I felt that I might not be up to the task, my experiences in caring for my sister when she was dying had taught me that dying didn’t need to be scary. Indeed, when my sister died, I was by her side, singing to her, and after she breathed her last breath, I thanked her for making it “not scary.”

I’ve carried that knowledge with me ever since. And I’ve shared it with families as I accompanied them as the person they loved was dying. I’ve sat with people as they died when family couldn’t be there. And each time I’ve considered it an honour to be with someone as they left this world. And increasingly I felt that it was what I was meant to do (another phrase I never would have uttered before I became a hospice volunteer!)

After all these years, I know that it’s what I’m meant to do. As a life coach, I work with people to help them uncover their “life purpose,” something people feel they lack in this modern world of disposable everything, including jobs. Sometimes my clients will remark upon how “lucky” I am to have found my calling with hospice.  I was none too sure it was luck that brought me to hospice – more like the benefit I got from losing my beloved sister all those years ago. But yes, I would say, I am very blessed to be a hospice volunteer.

I am saying all this by way of explanation for why I wrote that post in late June. I was feeling that what the core of hospice volunteering was getting lost in all the busyness of our shifts. And as someone for whom “hope springs eternal,” I hoped that I could help us to recapture that core. In writing what I did, I never for one minute intended to point fingers at or criticize anyone. I was trying to identify a shift I felt had happened slowly over time in the culture of the place I loved.

I’m not going to detail here what’s happened since I posted that piece in late June. Suffice it to say, it’s been one of the most devastating experiences of my life (and trust me, I’ve had a few!). In the end, I chose to resign from my volunteer role with this hospice organization. Since then, I’ve been ricocheting through what Elisabeth Kubler-Ross identified as the five stages of grief, something that’s familiar to all of us in hospice work. Some days I’m bouncing between bargaining and denial. I sleep poorly, wake up remembering that I don’t have a weekly shift any more, and feel the sadness all over again.

Most days I trust that I’ll find other ways to serve dying people and their families. And in the meantime, I’m stepping up my work as a hospice palliative care activist and advocate. I’ll start visiting hospice residences that have opened since I did my original road trips a few years ago. I’ll lobby for greater access to hospice palliative care across the province and the country. And I’ll write this blog because I’m still a hospice volunteer – it’s in my heart and soul and I’ll continue to do this work wherever and whenever I can. Hospice is not a place – it’s a philosophy of care, a practice, and a way of being.

Thank you to everyone who commented on that June blog post. It meant a great deal to know I wasn’t alone. So please keep reading and sharing about the work that you do.

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Often, when I am feeling downhearted or sad, as I have for the past couple of weeks since I posted “The Heart of Hospice” message, I find myself turning to music for comfort. Music has always played an important part in my life, whether it was strumming my guitar and belting out the songs of Bob Dylan and Phil Ochs, or performing feminist songs at coffee shops and rallies in my twenties, or dancing and singing with my babies. My younger daughter studied the clarinet, and played with a sensitivity and musicality that filled the house with beautiful music for many years.

In this, the final third of my life (if I’m lucky!) I’ve taken up the ukulele, a much easier instrument to transport than my guitar, and much easier to play. I bring it along to the Kindergarten class at a local inner city school where I lead the music program once a week. And I sing at every opportunity I get, whether in the choir I joined a year and a half ago, or in the NAC pop-up choir that took place last Thursday, or in my bedroom, listening to music that touches my soul.

Today, as I faced the sadness and grief I’m feeling at a change that is dramatically affecting my life, I found myself singing along with Linda Ronstadt, James Taylor, Carole King, and the music of my twenties and thirties. Sometimes I sing those songs to dying people at the hospice, as I did for my sister when she was dying 21 years ago. We shared a taste in music as we did in many things. When her best friend died of cancer not long after our mother had her brain aneurysm in 1990, Carol and I would listen to the Linda Ronstadt song, “Goodbye My Friend,” as we promised to care for one another in the years to come. (If you don’t remember or know that song, you can find it on YouTube by Googling it.)

On the day that Carol died, I sat by her bed, talking quietly and singing songs we loved. Carole King’s “You’ve got a friend” was the song I sang as she died. Singing it now carries me back to that time, and reminds me of the depth of the friendship and love we shared.

Here is the link: https://www.youtube.com/watch?v=qde5NMy7WTU

The final piece I’ve been listening to is the soundtrack from Departures, a Japanese film that is one of the most brilliant films on the subject of dying that I have ever seen. The soundtrack is beautiful, evocative, and, for me, uplifting, and I’m listening to it now as I write. Here’s the link to a review of the movie.  https://www.rogerebert.com/reviews/great-movie-departures-2009

I hope that you have music that touches your soul in good times and bad, in joy and in deep sorrow. Perhaps you can share your favourite here.

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It’s been a bit of a whirlwind this week with the release of the report on Monday and four radio interviews that morning (all before 8:20 in the morning!). It’s been wonderful sharing the report with people and initiating conversations about the importance of talking about death and dying.

On Thursday, I attended the annual palliative care education day in Ottawa. The keynote speaker was Jeremie Saunders (founder of the amazing podcast Sickboy). If you haven’t had a chance to hear Jeremie speak, I strongly advise that you check out the podcast. You can find it on I-Tunes (or wherever you get your podcasts). So far Jeremie and his co-hosts have interviewed 140 different people about the impact of their illness on their lives. Jeremie lives with cystic fibrosis, and his story and his energy, passion, and truth-telling is truly inspiring. And laugh out loud funny! Please check him out!

Today I attended Grand Rounds at the Hospice where I volunteer. Jeremie was the speaker there as well, and though I had just heard him yesterday, I enjoyed every single minute of his talk. His key AHA moments as he calls them:

  1. Be vulnerable.
  2. Life is too short for small talk.
  3. Your Actions CAN change the world.

A pretty great way to end the week!

 

 

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The report is out! Here’s the link: Family Perspectives: Death and Dying in Canada

It’s wonderful to have it launched on the first day of Hospice Palliative Care Week!

Enjoy!

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Late last year I did an interview with Dr. Karen Wyatt, a hospice physician, speaker, author, and founder of End of Life University – a series of interviews with key figures in what has been called a movement to reclaim death and dying. The interview was great fun, as we shared our common passion for end of life care. I felt like I was having a conversation with a close friend (though we have never met!), so connected are we to improving end of life care in our two countries, and throughout the world.

Have a listen, and let me know what you think! Please feel free to share with your colleagues, friends, and fellow hospice volunteers.

http://www.eoluniversity.com/apps/blog/show/45144022-lessons-from-a-hospice-volunteer-with-katherine-arnup-phd

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https://www.thespec.com/living-story/8077999-in-denial-about-death/

When I was doing research for my book “I don’t have time for this!” I created a number of google alerts on death and dying, palliative care, medical aid in dying, and elderly parents. I’ve kept those alerts active and, as a result, I receive a daily digest of all the relevant Canadian media items on these topics. I realize this probably makes me seem even weirder than I probably already did, but it’s given me access to articles and news stories I would not otherwise have seen.

The link above is one such story – a fulsome and thoughtful article about the impact our culture’s fear and denial of death is having on the institutions (hospitals, long term care homes etc.) and families in society – and the crisis it will create in the not-too-distant future. I urge you to read it – and to consider the impact that those of us who are involved in hospice care are having in breaking the silence around death and dying.

On another note, I’d like to welcome all the new followers to this blog, many of whom hail from countries where the fear of death is not so prominent. I would love to hear from followers new and not so new, about your own experiences of death and dying. Feel free to comment here – if  you have something more lengthy that you might wish to contribute, please send it my way so that I can consider including it on this blog.

If you’ve just happened upon this blog for the first time, please consider following it – there should be a button near the bottom right corner where you can click. I promise I will not be flooding your inbox. Also, feel free to scroll through the archive of postings and respond to topics from the past.

 

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I wrote the blog post below six years ago, as I faced the month of Christmas cheer (and excess) with which we are inundated, regardless of our religious faith or lack thereof. Each year, I find myself re-reading this post, as I remind myself that many many people find this time of year difficult. The loss of a loved one, an illness, an estrangement, painful memories, or longing for the memories of years gone by. And for many of us, the memories co-exist with the happy times and new traditions we have with grandchildren, friends, companions, and colleagues.

This piece is a reminder to all of us to think about those for whom this season is a challenging one.

**********

You can’t miss the fact that we are approaching Christmas, even if you tried to. Elevators and malls pump out Christmas tunes, newspapers and flyers are full of ads for the newest toys, gadgets, and must-haves. ‘Tis the season to be jolly, we are repeatedly reminded, in case we had forgotten.

But what about those people for whom Christmas is not a season of joy? Many of us set aside food and sundries for homeless shelters, buy toys for underprivileged children, send an extra donation to our favourite charities. It’s great that Christmas provides an opportunity for generosity and gratitude and I have no doubt that these actions do make a different, however small, in people’s lives. Today, though, I am thinking about a largely invisible population – people for whom Christmas has lost some of its magic, whether because of serious illness, a painful separation, or the death of someone they love. Where in this season is the place for these people amidst the shopping and celebration and feasting?

I grew up in a family where Christmas was a “big deal.” Though the gift giving would pale in comparison to the extravagances many people engage in today, still our annual rituals of new vinyl records, a new dressing gown (with a crisp new $5 bill in the pocket), a silver dollar in our stockings, the obligatory item or two of clothing, and a few “special gifts” for each of us. I can still remember the amazing service station complete with car elevator that I received when I was 10. The fact that my not very handy father had spent half the night trying to put it together made the gift all that more special. I’m certain that my sisters have equally vivid memories of their favourite gifts.

When grandchildren arrived, my mother got the chance to embrace Christmas full force. She loved buying special fancy clothing for her four granddaughters, and to “spoil” my daughters with elaborate toys I couldn’t afford. She was in her element filling stockings with trinkets she had found throughout the year – and expensive necessities (a roll of stamps, a pack of subway tokens, bookstore gift certificates).

All that changed when my mother suffered a brain aneurysm in 1991. Though she survived the aneurysm, she was left with considerable brain damage, and could no longer walk, speak clearly, or care for herself. Shopping for Christmas was clearly out of the question. Without our mother’s zest for Christmas, something was missing in “family Christmas.” It wasn’t about the presents – it was about how much my mother loved giving them. She took so much joy in being able to surprise us, to help us, to make us happy.

When my sister Carol died in 1997, “family Christmas” seemed to end.  Carol was that person in your life who always knew exactly what you needed, even though you didn’t know it until the you opened up the present. A set of dinosaur rubber stamps for my older daughter who loved dinosaurs and writing stories. A kit to make beads from wrapping paper. A beautiful sweater suitable for work for me (no one but Carol ever dared to buy me clothing). As with my mother, it wasn’t the gifts themselves that mattered. It was the fact that she knew us SO well.

It’s not that Christmas stopped after my mother became ill and my sister died. But that particular carefree (for me!), joyful, special family Christmas did.

Strangely, it’s through volunteering in hospice that Christmas was transformed yet again. Each year, the hospice asks people to take on extra shifts, as regular volunteers fly off for family gatherings or stay home to cook and be with their own families. The year I graduated from the hospice course (2001) I eagerly signed up for extra shifts. I expected the hospice to be a sad and dreary place, as families celebrated their last Christmas together, or their prepared for their first Christmas without Mom (or Dad).

When I walked into the residence that year, I could hear singing coming out of Room 4. Jingle Bells. Joy to the World.

“Who’s being so inappropriate as to sing Christmas carols,” I wondered. I soon discovered my answer. Room four was filled with family, bearing gifts, shaking Christmas bells, trimming the tiny tree placed on the nightstand. And sitting up in the hospital bed was the queen of the day, wearing a Santa cap jauntily placed on her head, and joining in the festivities.

“You folks sure know how to celebrate,” I remarked.

“Oh yes. That’s the kind of family we are. Since she can’t come home for Christmas, we brought Christmas to her!”

I have never forgotten that image, though it’s been 11 years. Joy in the midst of dying. Celebration of life.

I learned that year that many patients “hold on” until Christmas, dying shortly after. My own mother waited so she could be with her family one last time. It is indeed a special time – not because of the presents, or the turkey, or even the beautiful music. It is special because it is a celebration of life – new life – and life well lived. And so, as I approach this holiday month, I’ll remember those faces in Room 4 that day, their joy and cheer and love. And hold all of this in my heart.

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