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When I started my post earlier today, I thought I was going to write about why I had to cut my Provincetown writing trip short. But as often happens when I sit down to write, the words take me somewhere else.

Two and a half weeks ago, I packed up four file boxes of writing, a bin full of writing tools (pads, pens, extra computer, many books, printer cartridges, label maker – of course!) and headed off to Provincetown for my annual writing retreat. I’d booked four weeks this year – two of them in residence at the Fine Arts Work Center where I took my first writing class in 2001 and two of them at the Cape Codder Guest House where I have taken refuge every year since then. I was excited as I drove the 10 hours to my destination (in two days) and thrilled as I set up my computer on the desk in studio 4.

Unfortunately, by the first evening, I had a sort throat. By the second, I was blowing my nose non-stop, and by the third I was in bed, trying to find my voice again, and cursing the germ that had settled into my lungs. Grandchildren germs, I thought, remembering the coughs my daughter and her children were sharing freely before I left Ottawa.

I didn’t curse for long, however. Instead (perhaps miraculously) I found myself contemplating what opportunities being sick was offering to me. No, I didn’t think it was meant to be that I should get sick. But yes, I did find myself thinking, as I often do when I get sick, about the fragility of health, and life itself. As I lay in bed in this foreign land, I found myself appreciating the Canadian health care where I could visit a doctor without ever seeing a bill. (I’m always a little scared when I get sick in the US as I do NOT want to have to visit a US medical facility!) I appreciated my family (even as I wished I were closer to them at that moment), the many drug store items I had brought with me so that I didn’t have to spend precious American dollars, and the super duper soft Kleenex I splurged on, to soothe my weary nose.

I thought about how little I really needed – a salad from the health food store within easy walking distance, some chicken from Farland, my favourite lunch and provisions store. The lack of sun (and abundance of rain) made it that much easier to lie in bed and read or watch Netflix – and if I ran out of reading material, Provincetown’s fabulous library was just up the street.

For the most part I wasn’t able to write (hence the lack of blog posts for the past while), except for some scribbled pages at Harbor Lounge, three small blocks from my studio, with a fabulous view of the bay and the wharf (and wonderful cocktails and wine -the sign says it all – no food, just booze!)

By the end of the first weekend, I was feeling pretty proud of myself for being able to manage on my own. That’s when I noticed that I was scratching my head far more than usual – in fact, I was crazy itchy. The explanation arrived on Monday morning, when my daughter told me her children had lice. A quick try to the Shop and Stop (as I call it) for a comb and conditioner and I soon discovered that I too had lice. Not a million, but really, isn’t one more than enough.

I have to admit I was ready to throw in the towel at that point. Coughing, blowing my nose, achy, and now, LICE. My intrepid partner soon tracked down a lice lady on Cape Cod and urged me to give her a call. Feeling somewhat ashamed (who feels good about having lice?) I called the expert known as The Picky One. She sounded lovely – very matter of fact but kind – and we arranged for her to come to my studio the following day at noon.

To say I enjoyed our time together would be pushing it. She was, after all, picking nits off of my head. But we talked about aging parents and caregiving, and the challenges of dealing with children and parents at the same time. I told her about my book. She told me about how her father’s death had changed her. Before she left, she bought a copy of my book, and the next day, wrote to tell me she was crying by page 6 – while offering reassurances about my itchy head.

Many many loads of laundry and trips to the somewhat grungy laundromat later, I was ready to pack it in. I itched, I was still coughing and blowing my nose, and I still felt pretty miserable. My partner flew down to “rescue” me, we spent a beautiful sunny day in Provincetown, and then headed back home. As I packed up all the things I hadn’t used, file boxes unopened, art bag untouched, books unread, I admit to feeling regret that my retreat had not been as I had hoped.

But my time in Provincetown provided me with some important reminders – about taking care of myself, about letting go of expectations, about being with whatever happens. It reminded me of how much I like my life with its fixed points: hospice, volunteering with kindergarten children, playing the ukulele, spending time with my family and friends, walking by the river, singing in my choir. And I’m happy to be home again.

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.

 

 

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!

Last weekend I had the privilege of accompanying my aunt on the final days of her life. Long burdened with Alzheimer’s disease,  Aunt Ruth turned 94 on Friday, accompanied by a staff member who had stayed late Thursday night so she could be the first to wish her a happy birthday. On Saturday night at 11 p.m. she took her last breath, with another staff member by her side.

One of the longest residents of Fenelon Court, the long term care residence where she spent the final years of her life, Ruth was loved by the staff, who called her Ruthie, her childhood name I had only heard in family stories. She was the youngest of my father’s five siblings and the last to leave. She was spunky, spirited, outspoken, generous, and loving.

When we arrived from Ottawa on Friday, she was somnolent, no longer responding to visitors or staff. I had brought my ukulele with me on the trip, and knowing that hearing is the last sense to leave, I set myself up by her bedside and began to play. Whether she could hear me I’ll never know, but I like to think that the music of Leonard Cohen (Hallelujah) and the gentle words of The Water is Wide provided her with comfort on her journey.

As I played, staff came in and out of the room to check on Ruth, and to offer drinks or food to me. Each time they entered, I was struck by their gentle caring and familiarity with “Ruthie.”

“She’ll do it in her own time,” one nurse commented. “You always have, haven’t you Ruthie.”

On Saturday we spent much of the day with Ruth, giving my eldest sister a much-needed respite from the long days she had been spending by her side. Once again, I sang, shared birthday cards and stories with Ruth, reminders of the love that surrounded her. When we finally went back to our hotel at 9, one of the nurses reassured us that she would sit with Ruth. She remained at her side until she died.

The next morning we returned with my sister Judy to begin cleaning our Ruth’s room. Ruth’s body was still there, and I was glad for my years of hospice volunteering that helped it seemed perfectly natural. As I remarked on the volume of clothes in her closet, I couldn’t help but notice their beautiful condition – another tribute to the careful attention of the staff.

As we prepared to walk out with the people from the funeral home, a staff member lay a quilt over her body, and as we walked slowly to the front door, staff members throughout the building lined the halls, a gesture of respect I recognized from my own hospice.

Though I am writing this post to honour Aunt Ruth, I am also honouring the amazing staff at Fenelon Court. When I knew she was in a long term care facility, I had an image of hallways filled with patients sleeping slumped over in wheelchairs, a certain smell permeating the building. I had witnessed these scenes in other long term care facilities, and I was dreading seeing my aunt in such a place.

Fenelon Court could not have been farther from those expectations! The building is bright and clean, the patients engaged in activities where possible, and attended to with care in every encounter I witness. “We are their family,” one nurse told me. “Often they have a son or daughter who rarely visits. We are here every day and we love them. They’re our family too.”

Perhaps it’s because the facility has only 67 residents – and it is designed in pods so each area is relatively small and contained. Perhaps it’s because it is located opposite an elementary school and children often visit the centre, sharing drawings, Easter activities, and joy with the residents. Perhaps it’s because it’s located in a small town, a place where community really matters. But I think there’s something more – something I can’t quite put into words – beyond respect, dignity, caring, and love. That’s what I experienced with my aunt last weekend. And for that I am enormously grateful.

Fenelon Court

fenelon_overview

In the midst of a far-too rainy Spring, what better way to pass the time than to curl up with a good book? Of course, if are a regular reader of this blog, you’ll know that my taste in books, films, television programs,  and conversations does tend towards death and dying!

The New York Times has a lovely review of the new book by Jessica Zitter MD.  Dr. Zitter’s work has been featured on the New York Times and numerous other publications, and in the recent Oscar nominated Documentary short, Extremis.  Here’s the link to the film: https://www.netflix.com/search?q=extremis&jbv=80106307&jbp=0&jbr=0 (available on Netflix)

Check out this review, then read the book!

Death Café

This week I had the chance to attend a death café at a downtown restaurant/bar in Ottawa. For those who are not familiar with the concept, a death café is a gathering of people (generally strangers) who come together over tea and cake (or some variation on the theme – in this case, nachos and beer and wine!) to talk about death.

The idea originated with a Swiss anthropologist named Bernard Crettaz, who organized the first café mortel in 2004. The concept was picked up by Londoner Jon Underwood, who organized the first death café at his home in East Hackney in 2011. Since then 4366 Death Cafes in 37 countries (and counting) have been held, all of them loosely based around the idea of talking about all aspects of death and dying while sharing a cup of tea and cake. For further details see http://deathcafe.com/what/#sthash.drED13Sb.dpuf

Why would so many people choose to give up an afternoon or evening to talk about death? While I’m sure the reasons people attend are as individual as the people themselves, it’s safe to say that everyone is drawn to the cafe as a safe place to talk about death – something that, despite its inevitability, is still largely a taboo subject in much of the Western world.

One of the surprising things about the death cafés I’ve attended is the wide variation in the ages of the participants. While I expected to see many people of my own age and stage (at 67, someone who can see the sands of time slipping away with what seems like ever increasing speed!), both events I went to had a surprising number of young people (in their 20s and 30s).

I can’t speak for the motivations of everyone in attendance, as we are generally seated at a table of four or five for the duration of the event, and thus don’t have the chance to get to know everyone at the event. What I can say, from the discussions I’ve been part of, is that everyone has experienced death first hand (a grandmother, mother, sibling, close friend or a serious illness themselves), and they’ve longed for a safe place to talk about the experience.

At my first death cafe (an event with about 45 people),  I sat with a young mother of three who had lost both her parents at a very young age; an 84 year old woman who, though quite fit and hardy, was exploring the options for medical aid in dying (for when the time comes); and a man in his forties who seemed more driven by curiosity and theory than direct experience. And of course, I had lost both my parents and my sister, and was very involved in hospice work.

This week, I was invited to join a table of four people, three of whom I already knew from completely unrelated settings. We needed very little prompting to get us going – merely asking “What brought you to the death cafe today?” was fuel enough for a lively conversation that ranged from becoming involved in the funeral business to losing close family members.

We talked about our fears of death (whether we had them, how we had gotten over them, who we dealt with others’ fears), our hopes for the end of our lives, and how we felt about how society deals with death.

Sometimes we could barely hear each other, as the conversations at the other tables broke into gales of raucous laughter or heated discussions (or both!) I could hardly believe it when the organizer announced that it was 8 p.m. and time for us to go. We had been talking about death non-stop for an hour and a half. And I suspect we could have gone on much longer!

“How was it?” my partner asked, when she picked me up.

“Great,” I said, never quite sure what else to say. The conversations themselves are so fluid and intimate in ways one wouldn’t expect with a group of strangers. And somehow sacred.

When I think about what I love about events like death cafés (or dinners or salons) I think about how refreshing it is to be able to talk about death without having to whisper or worry about someone’s reaction or about being called morbid.

As someone who has volunteered in a hospice for over 15 years, talking about death and dying seems like the most natural thing in the world – and one of the most important. If we don’t talk about death – what it looks like, what we might want at the end of our lives, how we can care for the people we love, how we can change the face of dying in our culture – we remain powerless to influence our deaths.

How will others know what we want, if we can’t talk about it? How will we know what our loved ones want?

As one of my favourite phrases tells us, “Talking about death won’t kill you!”

Let’s talk!

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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