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Archive for the ‘Hospice’ Category

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.

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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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We live in a culture that places a tremendous value on multi-tasking. Books, articles online, in magazines, and in business sections of newspapers extol the virtue of being able to focus on multiple tasks at the same time. This goes well with the “cult of busyness” that seems to have overtaken the Western world. Dare to ask a colleague how they’re doing as they race past you down the hallway, and they’re likely to shake their head and respond, “I’m so busy.” Indeed, busyness seems to be synonymous with “important” in the modern lexicon.

For the most part, these values do not hold sway in a hospice. At the end of life, everything slows down, and staff, volunteers, and family members tend to mirror the pace of each resident’s dying process. As I’ve written on this blog before, this focus on being fully present is one of the aspects I find most beneficial at hospice. I cannot properly be of service to residents and their families if my mind is racing with a million details and tasks.

Nonetheless, sometimes busyness does seem to intrude even in the sacred space of the hospice. I’m not talking about the genuine emergencies which do sometimes occur. I’m referring to the tendency of people sometimes to assume that if you do not appear to be “busy,” you are not actually doing anything and are therefore ready to be interrupted.

A recent hospice shift provides graphic evidence of the perils of interruptions.

Though not all the beds were full that day, there was no shortage of tasks to occupy my time. A bed to be made up, dishes to rinse and put in the dishwasher, lunches to make, coffee to brew. You get the idea.

About three quarters of the way through my shift, a staff member popped into the volunteer room where I was writing notes in the volunteer communication book. “Room 4 is ready for you to take her order.”

I quickly made my way to Room 4, where I found a woman wrapped in a quilt, sitting at ease in a large Lazy-boy chair.

“I hear you’d like some food!” I began, perching on the edge of her bed.

Immediately the bed alarm began screeching, alerted to movement by my weight.

“Oops,” I said, jumping up and pressed the reset button on the alarm. “What would you like?”

“What do you have?”

“Well, it looks like you had chicken shepherd’s pie the other day. Would you like that again?”

“No, I had that yesterday. What else do you have?”

“I could make you an egg salad sandwich.”

“With dressing?”

“Of course! White bread?”

“Yes, just one slice.”

“Coming right up,” I said, happy to have arrived at an item that appealed to her.

En route to the kitchen, a staff member called out, “The family in room 2 needs a tour.”

“Sure,” I said. “Right after I finish this.”

The kitchen was a busy place when I entered. A family member was heating up some stew for his lunch. “Do you have something I can store the rest of this in?”

“Why don’t you heat it up in this bowl and save the rest in the original container?” I suggested. “And I just made some fresh coffee if you’re interested.” I reached into the drawer to grab him a cup.

When another family member joined us, I offered her a cup of tea, pointing out the range of choices Tim Horton’s has generously donated to us.

“OK,” I counseled myself, “time to make Mary’s lunch.”

I checked the freezer for a small container of shepherd’s pie, removed the lid and popped it in the microwave. I had a nagging feeling there was something else she wanted, but carrots were the only thing that popped into my mind and I knew she’d rejected that.

When the microwave beeped, I took out the bubbling container and transferred it to a bowl. I added the cup of very weak tea she’d ordered (“Just put the bag in and take it right out again!”) and placed it on the tray. I felt proud of my ability to focus on the task at hand in the midst of competing demands!

When I presented the tray to Mary, she looked at me with horror.

“I asked for an egg salad sandwich,” she said.

“Oh my God, I can’t believe I did that. I am so sorry.” I kept repeating that over and over again. “I’ve never done that in my life. I am so dumb.”

“Don’t worry about it,” she commanded, hoping for an end to my litany of self-judgment.  “Just make me an egg salad sandwich.”

To make sure I wouldn’t forget her order again, I wrote “egg s. 1 w. bread” on my palm.

When I returned with her order a few minutes later, she gave me a look of approval. I waited until she’d taken her first bite and pronounced it “just what I wanted,” before heading off to my next assignment.

I’d like to think I’ll never make that mistake again but I know there’s a good chance I will (though not the very same one, I hope!).  I know that we are all subject to information overload. I hope I will remember to  ask someone if they are busy before I interrupt them. And I hope that my colleagues at hospice will do the same. That way perhaps we can all remain in the moment.

 

 

 

 

 

 

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I’m excited to see so many visitors to the hospice volunteering blog this week. I’m grateful to Hospice Care Ottawa for including the blog in their monthly newsletter for volunteers and staff. I hope that many readers will choose to follow the blog – that’s the easiest way to ensure that you keep receiving it on a regular basis. I don’t post a great deal – at most once a week, but often less, as life carries me away to other pursuits. There’s a button on the page that says “follow‘ – just click on that, give your email address, and you’ll get a message each time I post.

I have another reason to thank Hospice Care Ottawa – they graciously hosted the latest Death Cafe at the May Court Hospice on Monday. We had a great turnout – and from the buzz in the room I could tell that people were engaged in lively conversation. I know I had a great time with the three other people at my table!

I’ll keep you posted on other upcoming activities – here in Ottawa and elsewhere. In the meantime, feel free to share this blog, and to read the archived posts on this site. Thank  you!

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