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Posts Tagged ‘dying’

Here’s a link to an interview with Kelli Stadjuhar, whose work with marginalized people has inspired me for years. I was fortunate to hear her at the International Congress this month. She is passionate about the way end of life care is (and is not) provided to people who live on the margins of society.

www.cbc.ca/player/play/1353794115819

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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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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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Dr. Peskin’s first article on the face of dying. I know that when my sister was dying, I felt reassured when I learned what dying might look like and I could better understand the meaning of what I was witnessing. In my hospice experience, most people fall into a deep sleep and die peacefully. Here Dr. Peskin discusses some of the symptoms patients might exhibit.

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A beautiful article on the face of dying – by a physician.  I’ll post her earlier article too.

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Last week, Canadians were shocked and saddened by the tragic circumstances surrounding the death of an Ottawa woman. An op-ed piece written by her husband in the Ottawa Citizen was followed by a radio interview on CBC’s Ottawa Morning. Here are the links to the article and radio story:

http://ottawacitizen.com/opinion/columnists/adams-what-my-dying-wife-and-i-never-knew-about-palliative-care

http://www.cbc.ca/news/canada/ottawa/programs/ottawamorning/palliative-care-1.4194365

The story provides graphic evidence of the shortcomings of palliative care in this country. As the Canadian Hospice Palliative Care Association has documented, only 17 to 35% of Canadians have access to hospice palliative care. Many factors result in that variation but even at the high point of 35%, the vast majority of Canadians are not receiving the care they need.

Those of us who have experienced palliative care can attest to the dramatic difference it can make in the lives of terminally ill patients and their families. As many experts have argued, palliative care should be available to patients from the onset of a life-threatening illness to help them deal with pain and other symptoms associated with their illness and to provide them with the knowledge needed to make informed choices.

When my sister was dying 20 years ago, there were (to my knowledge) no pain and symptom management teams or facilities we could access to help us with her care. It was our incredible good fortune to find an amazing palliative care nurse (through a visiting nursing service) who guided us through the final days. Her name was Isabelle (“Is a bell necessary on a bicycle?” she used to joke when I had trouble remembering her name) and she followed us from home to hospital when my sister had to be transferred. She patiently explained the significance of Cheyne-Stokes breathing (the “death rattle”) to a very frightened sister (me), offered non-judgmental advice on the choices we faced (e.g. whether oxygen might help), and reminded me that we were doing a great job.

Today, nurses like Isabelle are working in hospitals and residential hospices, and visiting patients in their homes (including long-term care facilities and retirement residences). They ease the journey towards death for both patients and their families. I wish everyone could have an Isabelle (or a Linda, Valerie, Marie, Esther … ) by their side at this difficult time in their lives.

In my view, there is nothing wrong with palliative care that greater commitment, education, financing, and access wouldn’t fix. We need greater emphasis on palliative care in medical schools and nursing programs. We need the federal government to truly commit to and fund an end of life strategy, and we need our provincial governments to ensure access to high quality hospice palliative care for all Canadians, regardless of where they live.

Until then, I fear that more people will experience the needless suffering that the article above describes. Let’s all work together to make sure that doesn’t happen.

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Preface: I just reread my last post, written nearly a month ago. I love the optimism in the conclusion, my happiness at being home amidst all my fixed points. Alas, within a few days I had somehow suffered an injury that left me with a pulled piriformis muscle and a resulting pinching of my sciatic nerve. (I know, this is too much information for most of you!) The result has been intense pain such that I have rarely experienced (48 hours of labour outdoes it but that was long ago, and with an excellent result!) It’s given me a new perspective on pain, on how exhausting and debilitating it is – and yet how largely invisible pain is, and thus people can assume (wrongly!) that it’s no big deal.

Many times over the past weeks, I’ve thought about how people reacted to my sister’s pain – suggesting she might be exaggerating or even making it up. I remember the orderlies who demanded that she “scoot over” onto their gurney from her hospital bed. Riddled with tumours up and down her spine, she could barely move, let alone “scoot over” upon command.

My sciatic pain was nothing compared to hers, which is why I hesitated to write about it. But as a nurse I worked with yesterday at hospice said, “it’s certainly not a lot of fun.”

All that to say, I haven’t been sitting at my desk for a long time – hence my silence here.

As readers may remember, yesterday was the 20th anniversary of my sister Carol’s death. As the date approached, I’ve thought a lot about the impact of her death on my life, and about what it means to lose a sibling. So I will share some of those thoughts here.

I fully recognize that not all siblings are close, often separated as they are by geography, age and even generation, by life choices, and historic grievances tracing back to childhood. Though my sister and I had had a few low points in her relationship (especially when I became a hippie and frequently criticized her for taking a “straight job.” I was insufferable!) But once I came to my senses and returned to university to become a teacher myself, our bond grew closer and closer.

When our mother suffered a massive brain aneurysm, Carol and I promised we would care for one another when we were sick or in need of help. And I was able to fulfill my half of that bargain when her cancer (originally diagnosed in 1978) returned with an unstoppable force in January 1997.

As often happens when someone is seriously ill, we became closer than we had ever been. Spending hours together, watching videos and bad daytime TV, remembering our childhood antics, talking about hopes and dreams (and fears).

When she died on July 4, 1997, I was devastated. Even though we all knew the end was coming, we had focussed on the immediate – tests, blood transfusions, medications – anything to make her more comfortable. My days were taken up with helping her, organizing her care, and commuting back and forth between Toronto, where she lived, and Ottawa where my immediate family resided. And then, suddenly, all that was gone. After months of thinking about what Carol needed, I had no idea how to carry on.

One of my strongest memories from that period was my desire for some sort of visible sign of my loss. A black arm band, a long black dress (as worn by widows in the Portuguese and Italian communities where I had lived for many years) – something to indicate that I was in mourning.

Though friends and colleagues sent cards and flowers immediately after Carol’s death, soon enough (far too soon for me) they began to carry on as if nothing had happened. Yes, I had a brand new job as the Director of Women’s Studies, and there were responsibilities I had to fulfill. But I still needed consoling.

What I found so difficult was the silence. Perhaps people didn’t know what to say.  Perhaps they found my bereaved state frightening. I had certainly been in their shoes before Carol died.  But now I experienced first hand the impact of avoidance and silence.

One factor, I think, was that most people my age had not yet experienced the loss of a close contemporary, be it a friend or relative. I was only 47 and Carol, just 51. While most of us experienced our grandparents’ deaths, and some of us, parents, siblings were part of the fabric of our lives, people who knew us from the very beginning (or soon thereafter), people with whom we could still consider ourselves young and more or less invincible.

At hospice, I see many people who are faced with the death of a sibling. I can still vividly recall the first person – her sister was a teacher, as Carol had been, her career and life now cut short by cancer’s horrible force. Her sister brought in baked goods almost every time she visited, and she would share the lemon bread, blueberry muffins, and other treats with the staff and volunteers. It was something concrete she could do, when there was nothing she could do to prevent her sister from dying.

Though we are not supposed to talk about our personal lives, I told this woman that my sister had died four years before. We didn’t discuss details, only that I, like her, had been her caregiver. She thanked me for telling her about my loss, and I could see her shoulders relax as she realized that she was not the only one.

Several years later, I bumped into her on the street.

“You know what I tell people?” she told me. “I tell them that when I met you, and I could see that you had lost your sister and you were still standing, and volunteering even, I knew I would survive the loss of my sister too.”

After Carol died, I searched for books that might help me deal with my loss and grief. While there were many books on parental and spousal loss, I found virtually nothing about losing a sibling. It’s one of the reasons I started writing about Carol around the time that I took the hospice training. Not only did I want to honour her with my words, but I wanted to let others know that I understand what it means to lose someone who has known (and put up with) you your entire life.

The death of a sibling can leave a deep and abiding void in one’s life. There will never be another Carol in my life. But I am grateful beyond words for what she taught me. And for the ways she has enabled me to help others through their loss and grief.

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