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Archive for the ‘Dying’ Category

When I opened my blog the other day, I could hardly believe that it had been over two months since I last wrote here. There are many reasons for my silence – the intensely snowy and icy Ottawa winter that kept many of us hiding in our houses, reading books and longing for winter to end! The birth of my newest grandchild (and countless trips to Toronto to help with preparations and host a shower, and now hours upon hours of walking with her, delighting in the wonder of a new life in this world. A journey to Boston en famille to watch my older daughter compete in her third Boston marathon! Visits to my eldest sister as she recuperated from heart surgery.

I’ve termed this year in which I will turn 70 the year of the family – and it is certainly proving to be an appropriate moniker. It seems as though my “to do” lists consist of trip preparations and must-not-forgets; and my time at the computer seems to be spent booking VIA rail trips and hotels, rather than writing blog posts or brilliant stories. Moments are captured in fragments in my journal and photographs on my newest Iphone. It has been a fabulous year and I am quite literally full of gratitude.

Of course, I still wonder where I will find my place in the world of hospice volunteering. I keep up to date on events and developments in palliative care and surround myself with the newest books and articles on death and dying.

In closing, I wanted to share a moving article about hospice palliative care that appeared in a local magazine last month. It’s a beautiful reminder of the tremendous value of  hospice care for dying people and their families.

https://ottawamagazine.com/magazine/palliative-powers/

 

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On the final day of the International Congress, I attended two sessions about providing palliative care to underserved populations. This term refers to a wide range of people including prisoners, those traditionally referred to as homeless (whether living on the street, in a mission or shelter, or underhoused in precarious housing). What I like about the terms underhoused and underserved is that it removes the automatic judgement so frequently attached to people who lack access to services that most of us take for granted, as if this lack were entirely their fault.

The commitment of the speakers I heard in these sessions reminds me of the words of Dame Cicely Saunders, founder of St. Christopher’s House in London and considered to be the founder of the hospice movement. Her phrase was cited often at the Congress as it is by hospices throughout the world.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” Cicely Saunders

Researchers and palliative care activists Kelli Stajduhar (Victoria), Naheed Dosani (Inner City Health Associates in Toronto and co-founder of the Journey Home Hospice in that city), and Simon Colgan (Alberta Health Services, Calgary) spoke passionately about the work they are doing and what it will take to achiever equality in palliative care access and services in this country. I have heard Dr. Dosani speak before and I would highly recommend that readers familiarize themselves with his work (and hear him speak if you get the chance!) To read about Journey Home, visit their website. https://journeyhomehospice.ca/

All three speakers demonstrated the blatant and sometimes subtle ways in which access to palliative care is denied to people who lack access to housing and other social services. Without a fixed address, for example, people are often denied disability and welfare benefits, as well as a  health care card (which is required to receive provincial health care services). Through the Journey Home Hospice (Toronto), like the Mission Hospice in Ottawa, and May’s Place (in downtown Eastside Vancouver) people who can’t access traditional hospice services can receive the care and dignity to the end of their lives that Dame Cicely Saunders envisioned.

As readers can no doubt tell, I was inspired by the words and work of those who are working to ensure access to hospice palliative care to everyone, regardless of their social status, race, citizenship or nationality. I will be looking for ways to support the amazing work that they 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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I’ve been very quiet on this site over the past few months and it’s not just because I’ve been busy with writing or travelling or recovering from one bug or another. It’s because I’ve been stopping myself from saying what I’m about to write.

I’ve been a hospice volunteer for 16 and a half years. That’s a long time – and I proudly tell people about it at every opportunity I get. When I tell someone at hospice (usually a family member who asks how long I’ve been there) that I’ve been volunteering this long, they are always amazed – not at how wonderful I am (though of course I am – hahaha!) but at what a good place the hospice must be to have such dedicated volunteers. I suspect those readers of this blog who are volunteers have had the same experience.

But – and here’s the but I’ve not been writing about – increasingly I’ve come to question what my role at the hospice really is. As I’ve written before, one of the reasons I chose to volunteer in the residence was because I wanted to be part of a team. As an introvert and a writer (they do often go together I find!), I spend a lot of time alone. And I felt reassured that I would be working with a community of volunteers and staff to care for residents and their families.

In the early years, that is exactly how it felt. I still remember my Monday morning shifts. My “buddy” Alex and I  would arrive at 9 for our shift and invariably one of the staff would say something like, “Oh it’s Monday – I knew it would be a good day because you two would be on with me!” And I felt instantly appreciated. Often I’d get a hug when I arrived, and a thank you hug as I left to start the rest of my day.

Very often now, when I arrive, no one says hello. I sit with the volunteer I’m relieving and we do our report. She’s always happy to see me, so in that way I feel welcomed. But more often than not, a staff member will come into the room while we’re doing report and tell us of a lunch order, or someone who needs juice, or a task that needs doing. I’ve developed a self-protective habit of not going to do anything until I have familiarized myself with who is in the residence and what their needs and abilities are. And because as I’ve aged over the years (how did that happen?) I can’t remember the food orders as easily, so I will ask the staff member to write it down for me or to wait until I’ve done with what I’m doing.

Many weeks now, I find myself caught up in cooking, cleaning, emptying and loading the dishwasher, and find that at the end of my shift I haven’t had time to sit with a single patient. I might have talked briefly with a family member while I’m making someone’s lunch, but I haven’t really had time to engage in a “real” conversation or to let them know that I am really there for them, that that’s the most important thing I can be doing.

I recognize that once the “pioneering” days are over, institutions can become more routinized, with tasks being divided up in a silo manner, with each role having a specific set of tasks, and very little sharing of tasks happening between people. So, getting juice or ice water or tea or food are all tasks of the volunteer – even if that volunteer happens to be sitting with a dying person or talking to a distraught family member.

To me that seems like we’ve somehow lots a sense of real role and value of hospice volunteers. We are not (or shouldn’t be) unpaid personal support workers or cooks or cleaners – though I don’t think any of those tasks is somehow “beneath” me. I believe we are at hospice to support dying people and their families. We bring a wealth of experience – at work and in life – that can serve the people who come to our hospice. I don’t want to feel like I’m somehow slacking off if I spend a little extra time talking to a volunteer or to a family member. And at times, I’ve felt that some staff see my “merely” sitting as just that – wasting time.

Over the years, and especially lately, other volunteers have shared these concerns with me. Being an old-timer, I’m not afraid to share our concerns with the volunteer coordinator or other senior administrative staff. Though I’ve found a sympathetic ear, I’ve never seen any real change happen. And it leaves me, frankly, discouraged.

I still tell others what an amazing place the hospice is. I write and publish work that advocates for the expansion of hospice and palliative care services. But this nagging feeling remains. So I’m writing this today because I don’t want to remain silent any more. Perhaps some of you can offer guidance, ideas, or advice. I look forward to hearing from you. And I feel better for having finally written this!

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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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There’s been lots going on in my life in the past couple of months – and I haven’t been writing as much as I’d like. But I have been reading, listening and talking about end of life care, death and dying, and I’ve been sharing some of the amazing resources I’ve discovered. As I write this, I’m listening to a fabulous interview with Dr. Susan MacDonald, the medical director of palliative care for Eastern Health. She’s an amazing, passionate advocate for palliative care, and she explains things with a clarity and understanding that’s rare.

Here’s the link:

http://www.cbc.ca/news/canada/newfoundland-labrador/tedwalks-podcast-susan-macdonald-1.4279306

She’s funny, bright, wise, and very forthright. I’d love to meet her!

The interview is particularly timely for me because this past week I found myself engaged in a discussion with the RN and PSW on my shift. It was a quiet shift, and we had the time to talk in a way we don’t often have. Issues ranging from the differences between palliative care and hospice (if there are any!), the reasons why people with heart failure tend not to be referred for palliative care, and and why people often think that opting for palliative care means “giving up.” It was a great conversation, and it was wonderful for me to be able to share some of what I’ve learned in my research and writing.

The discussion left me wishing that we had more opportunities to talk as a team, to share our different perspectives and to bring our unique insights to the team.

So please listen to this wonderful interview – and feel free to share your comments.

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Dr. Ira Byock is an American leader in hospice palliative care and a passionate advocate for end of life care. His first book, Dying Well, was released 20 years ago and it’s a remarkable book for its time and indeed for any time.

Earlier today, I listened to a discussion with Dr. Byock held in celebration of the book’s 20th anniversary. I wanted to share the link with readers of this blog – I think you’ll find  it as inspirational as I did.

https://iteleseminar.com/100035084?mc_cid=8f0593f849&mc_eid=[UNIQID

 

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I have a very difficult time dealing with people who are exhibiting signs of serious confusion or dementia. Perhaps it’s because I’m what I often describe as “pathologically honest” –  the result, no doubt, of being a judge’s daughter.  So when someone asks me a question that seems to come from way out in left field, I have a hard time not responding with what I see as “the truth.” Whether or not that’s the right thing to do, however, remains an open question.

I’ll give you a couple of examples.

One of the first times I faced this challenge in hospice was with Margaret. She was a woman in her 80s with a large, loving family who surrounded her with music and laughter, grandchildren and treats. One morning, when I approached her bed to ask if she wanted anything, she beckoned me closer.

“The air is changing. Can you feel it?” she whispered.

I was at a loss as to how to respond. I certainly couldn’t perceive any change in the air.

“No, I can’t,” I began.

“Well, you should be able to. It’s going to be in the Toronto Star.”

Before I could ask her precisely what the air felt like, she began talking about a complex machine she’d been asked to work on. She described gears and levers and a fantastical operating system that she seemed to understand perfectly.

“That’s amazing!” I said, in all honesty.

A few minutes later, I found myself chatting with her adult children who were relaxing in the hospice sun room. I mentioned Margaret’s comments to me and they smiled knowingly.

“Yes,” her son said. “It’s hard to know what to make of it.”

“Some people might say it’s the result of the medications she’s on. Or a lack of oxygen in blood stream. But somehow it doesn’t feel like that to me. Any way, I’m not about to ‘correct’ her,” I said.

“Neither are we,” a daughter chimed in. “And you know what? The workings of that machine she’s talking about are far too detailed to be the result of confusion. Mom never had any interest whatsoever in anything mechanical, and now she’s talking about complex mechanisms she has no business understanding.”

We settled on it being part of the mystery and left it at that.

All these years later, I can still see Margaret, sitting up straight in her bed, pointing towards the gardens and the river beyond.

****

On the weekend before she died, my sister Carol had a clarity and drive we had not seen in months. That’s part of why I was so taken aback when she seemed so disoriented when I arrived at her house on Monday.

“What are you doing here?” she asked.

“Umm, I’m here to visit you,” I said, more than a bit unnerved.

“Katherine’s come to spend time with you,” her caregiver B. offered. “Just like she always does.”

The sound of my name seemed to jolt her back to the present. We chatted a bit about what I’d been doing and how she was feeling and things seemed back to normal.

Then, out of the blue, she asked if I still had her piano.

“Your piano?” I asked. “Of course I don’t have your piano. It’s right upstairs where it belongs.”

I’m sure she could tell by my expression that I was freaking out.

“Not that piano! My tape of the soundtrack from The Piano!”

“Yes, I still have it,” I said a little sheepishly. “Do you need it back?”

She shook her head, laughing. She always loved to tease me!

It would be the last time. The next day, we were faced with a medical crisis. And by Friday morning, she was dead.

****

I could provide many more examples of hospice patients who have exhibited everything from mild confusion to profound dementia. Some will ask the same question  over and over again, trying to make sense of their surroundings. “How did I get here?” “Why am I here?” “Where’s my husband?”

There is no simple answer to those questions, and I’m no longer sure that pathological honesty works in all circumstances. What use is it to tell someone who suffers from profound dementia that they are in a hospice, or that they are dying, or that their husband has preceded them in death? The greater likelihood is that they will repeat their question every five minutes, regardless of whether we provide an answer.

So what are we to do? I come back to the place where I always try to begin. Be with them. Simply be with the person as they are, with their confusion, with their suffering, with their sadness. It is by no means easy. But I believe it is a way to honour their humanity, in all its complexity and mystery.

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