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Posts Tagged ‘hospice volunteering’

One of the most meaningful activities I engaged in as a residential hospice volunteer was singing to the residents. I wasn’t an official music volunteer nor was I a music therapist. I just love to sing and I have a huge repertoire of songs, from hymns to country and western favourites. I often sang to people who were anxious and finding it hard to settle down or go to sleep. Sometimes I sang to a person who was in their final days or hours and no longer responsive. I hoped that the music might reach deep inside and help them with their journey.

Recently I received a book by another hospice volunteer – someone who plays the guitar and rarely sings along. His book, The Music Between Us: Memoir of a Bedside Musician, is both a memoir and an account of his experiences playing at the bedsides of people in the final stages of their lives.

Steve Litwer, the author, visits people in their homes, in long term care facilities, and in hospitals. He brings along his guitar, and asks each person (or their family members) what sort of music they enjoy. Sometimes he will have only one visit before the client dies. On other occasions, he is able to make several visits, deepening the connection with each successive visit.

His visits with people living with dementia are especially moving. As research has shown, music can serve as an access point to memories that are not normally available to the person with dementia. But hearing a tune from a key period of their lives can rekindle memories and the person will sing the lyrics of songs, despite the fact that they have not spoken in months or even years. It’s an experience that’s rewarding for both the client and the musician as he watches the person come alive with the joy of music.

Each chapter of the book centres on the story of a particular client. Titles like “The Unlikely Hippie,” “All Blues Ain’t Blue,” and “Fifteen Pieces of Advice for the Living” provide humour and insight into the story Steve is about to tell.

As the title suggests, the book is also a memoir of Steve’s life, from his hardscrabble and abusive childhood, to his decades of wandering, avoiding intimacy, and lashing out. Over the course of the book, we read about Steve’s embrace of Christianity and his coming to understand the impact his upbringing had had on his ability to trust other people. After he retired, Steve chose hospice volunteering as a guitar player to give back to people. What he learned will be familiar to those who have volunteered in hospice – we benefit at least as much from our time with clients as they do with us. Lessons on the meaning of life, on intimacy and relationships, and on pathways to joy are among the benefits that Steve received from the people he visited.

For those readers who love music as much as I do, Steve’s book provides a broad sweep across the decades of the 20th century, as clients selected music that was meaningful to them in their lives. From the big bands of the ballroom era, to Elvis Presley, the Beatles, and the hippie era, the author plays the music of their lives, and, in doing so, unearths memories of youth, dancing, and and joy to accompany his clients on their journey. For those who subscribe to Spotify, the music is available on the author’s website. to enhance your enjoyment of the book.

This book would be a welcome addition to the libraries of hospice services where volunteers, staff, and families can learn about the role of music in people’s lives.

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A month and a half ago I wrote a blog post that I entitled “Hospice volunteers: the heart of hospice.” I didn’t invent the term – it’s one I’ve encountered countless times over the years in my research, interviews with volunteers, conversations with death professionals, and visits to residential hospices. The term doesn’t mean that volunteers are the only people who provide the heart in hospice care. Rather, it points to the unique role that volunteers can play – they are the only ones whose primary role is to simply be with dying people and their families – to listen, to sit in silence, to share a book or story, to sing a favourite song, to visit the garden.

It was that role that drew me to hospice volunteering almost 17 years ago. I can still vividly remember the evening I walked into the orientation meeting. The fact that the meeting took place on September 11, 2001 could have something to do with why that evening is etched in my mind (yes, that September 11!) but it’s also the feeling I had when I entered the building. Somehow I knew I had entered sacred space (not a term I normally used, as I described myself as the “least spiritual person I know”). But there was something about the building, the space, the people who worked there, that told me something very special was happening inside.

That feeling remained with me for many years, as I volunteered in the residence each week. Though sometimes I felt that I might not be up to the task, my experiences in caring for my sister when she was dying had taught me that dying didn’t need to be scary. Indeed, when my sister died, I was by her side, singing to her, and after she breathed her last breath, I thanked her for making it “not scary.”

I’ve carried that knowledge with me ever since. And I’ve shared it with families as I accompanied them as the person they loved was dying. I’ve sat with people as they died when family couldn’t be there. And each time I’ve considered it an honour to be with someone as they left this world. And increasingly I felt that it was what I was meant to do (another phrase I never would have uttered before I became a hospice volunteer!)

After all these years, I know that it’s what I’m meant to do. As a life coach, I work with people to help them uncover their “life purpose,” something people feel they lack in this modern world of disposable everything, including jobs. Sometimes my clients will remark upon how “lucky” I am to have found my calling with hospice.  I was none too sure it was luck that brought me to hospice – more like the benefit I got from losing my beloved sister all those years ago. But yes, I would say, I am very blessed to be a hospice volunteer.

I am saying all this by way of explanation for why I wrote that post in late June. I was feeling that what the core of hospice volunteering was getting lost in all the busyness of our shifts. And as someone for whom “hope springs eternal,” I hoped that I could help us to recapture that core. In writing what I did, I never for one minute intended to point fingers at or criticize anyone. I was trying to identify a shift I felt had happened slowly over time in the culture of the place I loved.

I’m not going to detail here what’s happened since I posted that piece in late June. Suffice it to say, it’s been one of the most devastating experiences of my life (and trust me, I’ve had a few!). In the end, I chose to resign from my volunteer role with this hospice organization. Since then, I’ve been ricocheting through what Elisabeth Kubler-Ross identified as the five stages of grief, something that’s familiar to all of us in hospice work. Some days I’m bouncing between bargaining and denial. I sleep poorly, wake up remembering that I don’t have a weekly shift any more, and feel the sadness all over again.

Most days I trust that I’ll find other ways to serve dying people and their families. And in the meantime, I’m stepping up my work as a hospice palliative care activist and advocate. I’ll start visiting hospice residences that have opened since I did my original road trips a few years ago. I’ll lobby for greater access to hospice palliative care across the province and the country. And I’ll write this blog because I’m still a hospice volunteer – it’s in my heart and soul and I’ll continue to do this work wherever and whenever I can. Hospice is not a place – it’s a philosophy of care, a practice, and a way of being.

Thank you to everyone who commented on that June blog post. It meant a great deal to know I wasn’t alone. So please keep reading and sharing about the work that you do.

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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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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’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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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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It’s 2017, so they tell me, though I have been laid up in bed since late December with a nasty virus, and have trouble remembering which day of the week it is.

In a few days it will be 20 years since my sister Carol was diagnosed with the virulent cancer that would take her life 6 months later, on July 4, 1997. I had just begun a well deserved and much needed sabbatical and was busy making plans for a research trip when my sister called to say that the cancer was back.

“Fuck, Fuck, FUCK,” I said, when she told me.

“Don’t say that,” she said.

“But it’s just not fair! You’ve done so well! Fuck, fuck, fuck,” I said again, the only words that seemed to capture the extent of my anger and grief and shock.

“Don’t say that,” she said. “It just makes it harder for me.”

“OK,” I agreed. “I’ll be on the first train tomorrow to see you.”

And so it began. The 6 month “journey” in cancerland – through endless visits to doctors and hospitals, CT scans and MRIs, biopsies, and surgery. Vomiting and K-basins. Fear. And always pain. And finally death.

So many of the details of those six months are still vivid in my mind and my heart. The endless waiting for results, the parade of PSWs and “sitters.” Dozens upon dozens of phone calls on pay phones, in the days long before cell phones. And countless conversations with Carol about what she wanted and needed. I would have done anything I could have for her. And in the end it was never enough.

Shortly after she died, I began to tell people that I had been transformed by Carol’s death. I didn’t really know what it meant, but I knew it was true. I was no longer running away from death. Four years later, I would begin what became my 15 year journey as a hospice volunteer. “My sister works through me,” I would tell friends when I first began my volunteer work with dying people and their families. Sometimes I could almost hear her telling me, “Slow down. There’s nothing you have to do. Just listen to their stories.” And I did.

And I still do, all these 20 years later. I also write and talk and speak at conferences and churches and meeting halls. I look for opportunities to share my book about caring for my sister and my elderly parents, in hopes that I can help others who are facing this challenging time in their lives.

When I first began volunteering at hospice, friends would look at me strangely as I would wax eloquent about my volunteering. Some thought it morbid, others that I was courting depression in being with dying people week after week. Few would believe me when I told them my time at hospice was the most hopeful part of my week.

More often now, people ask me what I do at hospice – what it’s like giving care to dying people, and talking with their families. More and more, of course, friends and strangers alike have experienced the death of someone they love. Or they are watching their aging parents coming to terms with their loss of independence and failing health. Perhaps they have received a difficult diagnosis themselves. Now they too want to talk about death and dying.

And so I will continue to write, here and elsewhere, about life and death. I’ll read the latest books on the subject from the library, and watch movies about “d and d.” I’ll continue to give talks wherever I can,  and I’ll look forward to hearing other people’s stories.

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I want to share the link to a fabulous article about the Zen Hospice in San Francisco and its amazing Executive Director, B J Miller. I had the chance to visit the hospice in 2005 and to spend time talking with one of the staff members about their approach. I will never forget our saying –  almost in unison –  that “dying is a spiritual activity.” We both smiled at the simple truth held in that phrase. Far too often in Western society, death has become a medical event, removed from life.

Read this story to the end – it’s enormously moving and for me, exemplifies what hospice care is all about.

 

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Before I start this post, I want to share with you an amazing podcast from the BBC that I came across recently. Here’s the link:

We need to talk about death

You can listen to it on your computer, or download the podcast and keep up with all the episodes as they are posted. There are two at the moment and they are truly wonderful. The instigator and narrator is a wonderful British woman in her 80s. She’s gathered a small panel of “experts” – people who have thought a great deal about death during their lives. The first episode talks about the importance of facing our fears of death and dying. The second focusses on pain. I wish I could sit down with all of you and listen to it together – and then talk about our own thoughts, feelings, and reactions. We seem to have so few places to talk about such things.

If you’re a regular reader of this blog, you’ve probably noticed that I haven’t posted in nearly two months. I could tell you that I’ve been busy, that life’s gotten in the way, that I’ve been working hard on other things, and, while all that would be true, it’s not the real reason I’ve been silent.

The real reason is because I’ve been struggling to find the meaning in the work I am doing as a hospice volunteer. It’s not that I’ve lost the calling. That’s something I’ve felt since I first walked into the hospice where I still volunteer. It’s something I’ve known since my sister told me “You’re going to be an expert at this by the time you’re done with me,” shortly before she died. While I certainly didn’t want to learn how to be with dying from my sister, she was, as always, an excellent teacher.

I feel honoured to be able to help dying people and their families. I treasure the conversations we have had over the past 15 years – and I hold deep within my heart the memory of the people with whom I’ve sat as they took their last breath.

But increasingly – slowly over time and, of late, more frequently – I’ve found myself confronted with more and more rules and restrictions, tasks and prohibitions. Seldom do I seem to have the time to sit with someone who is dying. Or to retreat to the sun room to have a chat with a family member who is having a hard time. Instead, I’m in the kitchen, loading the dishwasher (or waiting for it to be finished!), rushing to answer the phone or fix someone’s lunch.

I have never minded the quotidian tasks that are part and parcel of volunteering – I’ve become quite the expert at making jello, grilled cheese sandwiches, scrambled eggs (though not poached, after all these years). Those things have been part and parcel of the services we do. My struggle has been that we are faced with an increasing number of rules about how things must be done and what we must do to the point where I wonder if “being with dying” is actually part of our “job.”

Perhaps you’ll think I’m complaining – or being unrealistic about the degree to which organizations must change when they advance from their “pioneering phase.” But when I listen to people talk as they do on the BBC program mentioned above, I am reminded once again of the reason why I became a hospice volunteer – and I mourn what seems lost in the process of  growing, consolidating, and institutionalizing.

From my casual conversations during shift changes and with friends, I know I’m not alone in these feelings. I wonder if any of you readers out there might feel the same.

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