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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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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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As anyone who knows me (and that includes readers of this blog, of course), I am not a person who believes that everything happens for a reason. Whether it’s a death, the loss of a close friend, a job, or a house, the onset of a serious illness – the list is long for the events for which some people are determined to find a “silver lining.” When my mother suffered a massive brain aneurysm, when my sister was diagnosed with terminal cancer, and on many other occasions in my life, well intentioned friends and acquaintances would attempt to console me with the thought that even these devastating events happened for a reason.

Most of the time I’ve managed to control myself enough not to lash out (or worse) at these people. Instead, I point out that terrible things rarely if ever happen for a reason. Rather, what matters is what we make of the situation – how we come to terms with it, how we respond, how we make meaning in our lives. Readers here will know that the experience of my sister’s death transformed me in ways I am still coming to understand. My ability to be with suffering and death, my passion for hospice palliative care, my commitment to helping others deal with illness and dying, all stem from caring for Carol when she was dying. So too do my meditation practice, my writing and speaking about caregiving, and my heightened intuitive sense of the suffering of others.

Carol’s death didn’t create these things, of course – nor are they the “reason” she died. But they are part of the meaning I found in the aftermath of losing her.

On July 4th, it will be the 20th anniversary of my sister’s death. I’m not sure yet how I will honour her  (though I do know I have a hospice shift that day, which seems like a fitting way to celebrate her!) No doubt, I’ll write something, as I have so often in the past 20 years. And I’ll remember, with enormous gratitude, all the things my big sister taught me in our 47 years together.

 

 

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My last post – a death in the family – has had an amazing ride over the past five days! After I posted it on Facebook, I tried to “boost” it to reach more people and for some bizarre reason, FB deemed it to be unsuitable, objectionable content – they refused the ad and removed the message from Facebook! Magically, it reappeared a day later (perhaps because I appealed, though I doubt it!) And since then, an amazing number of people have read the post about my aunt’s last days. I am enormously gratified by the response and so glad my story reached so many people. Thanks to all of you!

It’s been a busy week, because this is National Hospice Palliative Care week. I participated on a webinar for the Canadian Hospice Palliative Care Association on living well, right to the end. Here’s the link to the show (I’m the first speaker, right after the introduction). I hope you enjoy it!

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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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