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Posts Tagged ‘hospice volunteers’

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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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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http://www.npr.org/sections/health-shots/2017/08/11/542607941/nearly-1-in-5-hospice-patients-discharged-while-still-alive

When I first saw the headline for this NPR story, I thought it was a good news story! One in five patients being discharged from hospice! That’s amazing!

But when I dug into the article, I realized how wrong I was. You see, in the US, most hospice operate on a for-profit basis. They are looking for ways to improve the bottom line by moving out patients who might need costly medical procedures – re-admitting them after they’ve been treated. As well, there’s evidence to suggest that they may be over-admitting patients who might not be within 6 months of death, thereby insuring that they fill all their beds. This doesn’t sound like good news to me!

Hospices in the United States began much like those in Canada – through the pioneering efforts of people following the example of Dame Cicely Saunders, founder of St. Christopher’s Hospice in London.  Once Medicare began to pay for the “hospice benefit,” for-profit enterprises (including venture capitalists) began purchasing and establishing hospices. The result of this is described in the attached article.

We are not perfect here in Canada – hospices are not adequately funded by Medicare and millions of dollars must be raised by each not-for-profit hospice just to survive. Costs are kept down by the use of thousands upon thousands of volunteers – providing enormous savings in staff salaries and invaluable services of all kind. As many people have noted, volunteers are the heart and soul of hospice and the benefits we provide are immeasurable.

Volunteers are essential to American hospices as well, of course. In fact, to receive funding through the hospice benefit program, at least 5% of staffing costs must be provided by volunteers. That’s a huge incentive to organizations to attract and retain volunteers.

Not all hospices in the U.S. operate on a for-profit basis. And I’m sure that some of the for-profit hospices provide excellent, caring services for people at the end of their lives. Nonetheless, I’m glad that in Canada, so far, we’ve maintained the non-profit basis for hospice services established by the founders of the hospice palliative care movement.

 

 

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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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An article I wrote was just published on a wonderful site called KevinMD. Here’s the link:

http://www.kevinmd.com/blog/2016/09/helping-hospice-present-much-important-busy.html

As always, I’d love to hear your thoughts.

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