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This is why we are here

When my father was dying, I often found myself saying, “I wish someone would tell me how this ends.” It wouldn’t take more than a minute before I’d catch myself. I knew very well how it would end. I knew it would only end when my father died. Whether peacefully (as it mercifully turned out) or with enormous suffering (as I rarely see at hospice), it ends in death.

And the fact was, I wasn’t ready for him to die yet. He was still of sound mind – at 94 – though his body had begun to fail. He was no longer able to go to a restaurant to eat dinner – one of our favourite activities. Eventually he stopped having “cocktail hour” with me – the only one of his four daughters who enjoyed this ritual with him. Still, we could sit and watch television together – Who wants to be a millionaire? Golf and curling – things I relished with him and would not be caught watching otherwise. I clung to those shared rituals like a drowning woman. Indeed, most days I felt like I was drowning.

Anything was better than losing my father – this man of wisdom, of knowledge, of family history.

Like the families I meet each week at hospice, I knew all too well where this was leading – but the routines of caregiving, be they cooking or grocery shopping or making phone calls, can distract us however briefly from the ultimate point of this journey. The person we love is dying. The person we love will no longer be in our lives. The person we love will leave us – forever.

Somehow we have to balance that knowledge along with carrying on the activities of caregiving. In fact, those activities are essential to providing care and maintaining our own sanity.

Soon enough we will experience what one family recently termed a “wake-up call.” When I asked him what he meant, he spoke eloquently about the impact that another patient’s death had had on him. “This is why we’re here,” he said. Not that he had really forgotten. Not that any of us is likely to forget for long.

And so we do our best, showing up as our best selves. This is what I hope I did for my father. And it is what I see families doing, week after week, at the hospice where I volunteer.

 

 

How do we keep volunteers happy? At the core of that question is a bigger issue for non-profit organizations that are increasingly relying on volunteers to perform a range of essential functions: how do we keep volunteers volunteering?

Today I ran across a series of articles online and I thought I’d share the link before offering a few thoughts of my own.

http://nonprofit.about.com/od/volunteers/a/14-Creative-Ways-To-Thank-Volunteers.htm

This week I applied to volunteer to read with primary students with the local Board of Education. My experience offered some lessons in how to encourage would-be volunteers. First, I completed the on-line application, indicating my background, education, volunteer experience, and reasons why I want to volunteer. As I typed in my degrees, experience as a primary school teacher, and long history as a volunteer, I wondered what the reviewers might think. Overqualified? Embellishing? I added the names of two referees (one of whom could be related, the form said), including a dear hospice friend and my eldest daughter, whose wonderful children I now joyfully care for on a regular basis.

Within five minutes of submitting the form, I received a phone call from someone at the organization in charge of volunteers. We had a lovely conversation about reading, my experiences, and my hopes for volunteering. When I indicated that I didn’t want to volunteer in my own neighbourhood (they don’t need me here, I explained), she was pleasantly surprised to say the least, and suggested a number of inner city school that might work for me.

Next step was to apply for my police record check. Although I’ve completed at least two of these during my volunteer history, an up-to-date record is required for each new volunteer, so I headed off to the police records station to complete my application. The waiting room was full with every chair taken when I arrived and dutifully took my number. Only 22 people ahead of me apparently in the A list of applicants. By the time my number was called, the room had nearly emptied, and I expectantly approached the wicket to submit my forms.

“There’s a wait of 6 to 8 weeks,” the person at the wicket informed me.

“There must be a lot of people wanting to volunteer!” I replied, a little shocked.

Of course, people also need a record check for internships, co-op placements, and jobs with vulnerable populations. Still I am sure there are many new volunteers at this time of year, as people make their post-summer plans. I felt happy to be taking part in the process shared my so many of my fellow Canadians.

Assuming all goes well, come October I’ll be happily spending an hour or two each week, introducing the joy of reading to some new little friends. I’ll keep you posted!

As a post-script, when I told my 5 year old granddaughter that I was applying to be a volunteer reader, she looked very sad. “But then you won’t be seeing me on Wednesdays any more!” I assured her that I would never give up our Wednesday library and dinner visits. “I just love reading so much, I want to share it with other little kids.” She seemed reassured, especially after I read her all 6 Spot books in our collection.

 

 

 

 

 

Summer Reading

For those of you who, like me, prefer non-fiction books to beach fiction in the summer, I ran across this blog post I think you’ll like. The author is a family physician and she urges us to read When Breath Becomes Air by Dr. Paul Kalanithi, a young neurosurgery resident at Stanford who was diagnosed with terminal lung cancer in his 30s. It’s a meditation on life and the choices me make in the face of death, and well worth reading.

She also recommends Atul Gawande’s amazing book, Being Mortal, which you must read, if you haven’t yet. Such wisdom about living and dying and the meaning of our mortality.

I urge you to check out her blog!

http://www.saratmd.com/finding-meaning-life-dying/

 

 

When I was first training to be a hospice volunteer (in 2001), one of the most important lessons the leaders drummed into us was the centrality of boundaries. We were reminded repeatedly that we were not a family member, a close friend, or even a not-so-close friend of the residents. In short, we were not in the “inner circle.” That space was reserved for those who were closest to the person who was dying, be they family of origin, by marriage, or by choice. As death grew nearer, we were to maintain a distance, making room for those in the inner circle to spend time with the resident before they died.

I had no problem with this lesson, since I had struggled with boundary issues when my sister was dying and a woman we had hired to assist with her care started to feel that she was as close to Carol (or perhaps even closer!) than we were.

We were also repeatedly instructed about confidentiality and never speaking about what happens in hospice with other people. What wee weren’t really prepared for is how to be when we know one of the people who is admitted to the residence.

As someone who lives in the same neighbourhood as the hospice where I volunteer, it’s perhaps inevitable that people will be admitted with whom I am familiar, whether as neighbours, colleagues, or local activists. When that has happened, I’ve made a mental note in my mind, mostly by way of acknowledging the sorrow and loss they must be facing. I make a point of not indicating I’m familiar with them, out of respect for their privacy and the tremendously challenging circumstances they are facing. I hold them in my heart, and continue with my work both inside and outside of hospice.

A while ago, a woman was admitted with whom I had more than a passing acquaintance. We had been colleagues once upon a time, members of the same neighbourhood, and friends of friends. I was saddened to see that she had been admitted and wondered how I should be. Should I avoid her room as much as possible out of respect to her privacy? Or should I go and greet her and help make her feel welcome?

I chose the latter option, as I knew in my heart it was the right one. I knocked on her door, came to the side of her bed, and said something like, “I’m sorry to see you here – though I’m glad you can be here.” She asked how long I had been volunteering and I told her. And she told me what a wonderful place it was. We spoke for perhaps five minutes, then I left her to rest while her family went to lunch.

For the rest of my shift, family and friends visited her, and I steered clear except to respond to the call bell.

The following week, as so often happens when someone decides to come to hospice, she was much weaker, and a note in the book indicated that only wanted to see her family. Despite my desire to go in and say hello, to offer my “expertise” or “wisdom,” I knew that was much more for my own needs than hers and I resisted.

This is often the litmus test for me when I am facing such a decision at hospice. I ask myself this question: “Are you going to see the resident (or say this brilliant thing) because it will support or help them? Or are you doing it because of a need of your own? To feel helpful and needed. To be validated in some way. To feel connected.”

I really do ponder those questions before going to a room or saying or doing something, especially as a patient nears death. Most of the time, the answer is that I can be of service to the patient, whether by sitting at the bedside when they are alone or singing songs or reading the Bible (or poems or any book that’s evident in their room). And I can feel certain that I am not breaching any boundaries and getting myself “in trouble.”

It’s inevitable that we will meet people we know in the hospice work that we do. Indeed, in rural hospices and small communities, it is unavoidable. The important thing is not that we avoid people we know or pretend we don’t know them. Rather it is respecting the honour and privilege we have been given in being able to accompany people when they are dying. Sometimes that means doing the dishes or making up beds or getting more ice to make ice chips. And sometimes it means making space for family members (supporting them if we can) and respecting their time with the person they love.

For those who may not have seen this article, here is a fabulous account of the work of a hospice nurse in New York City. It reminds me so much of the work that hospice volunteers and staff do every day. It’s a long but beautiful read.

http://www.newyorker.com/magazine/2016/07/11/the-work-of-a-hospice-nurse

 

A beautiful contemplation on end of life care courtesy of Emily Dickinson and an ER doctor, published in Hektoen Review where I’ve published a couple of hospice stories

Source: Emily Dickinson and medical ethics: the “Belle of Amherst” as ethicist

I’m finally back at my desk, after nearly a month in Provincetown where I’ve been writing, reading, walking, and pondering up a storm. My favourite activities – along with eating fabulous fresh seafood, meeting people from all over the world and talking about the things that matter to them. Provincetown seems to encourage both introspection and an ability to dream that makes for amazing conversations and I miss those whenever I come back home.

Lots happened while I was away. Medical Aid in Dying became the law of the land in Canada, after some back-and-forthing between the House of Commons and the Senate. Forty-nine people were murdered in a gay club in Orlando – an event that I have written and thought about a great deal in the weeks since. Donald Trump became the presumptive nominee for the Republican Party and his hateful rhetoric filled the airwaves in deeply disturbing ways. Britain voted to leave the European Union (an even that was decidedly interesting from south of the border as Americans tried to make sense of the impact of Brexit would be on them). The President of the United States visited Ottawa while I was south of the border as well – with scarcely a mention in the US press.

And finally, I turn my attention to hospice volunteering following my first shift in nearly a month. As I have written many times, each time I return after an absence I am reminded of the importance of having a “beginner’s mind.” Indeed, I am forced to remember because I know none of the residents who are at the hospice. Thus, I can’t fall into the trap of thinking that I know what they will be eating, how they will be feeling, who will be visiting and so on. I have to approach each person with fresh eyes and an open mind. And in so doing, I am able to be fully present with each one.

I’ll admit that I find it tiring, both mentally and emotionally, as I try to keep track of the new (to me) patients and their family members, while allowing myself to feel fully the circumstances they are in. The sadness, the loss, the impending deaths of mothers and fathers, sisters, brothers, daughters and sons. These are not my losses, of course, but they affect me, perhaps more so because I have been away.

And so, once again, I find myself wondering how we take care of ourselves and support one another in the face of so much loss and sadness. I don’t want to suggest that I am overwhelmed by my volunteering – I’m not. Over the years I’ve been at hospice, I have developed many mechanisms to help me. I write, I spend time alone to let the feelings sink in, I walk by the river, sometimes I talk (in extreme generalities of course) about what I’ve experienced.

Next week when I return to hospice, it is likely that two or three people I’ve met this week will have died. And while I go about getting to know the new people – and getting their lunch and helping to reposition them, and bringing them ice chips – I will silently bow to the ones who have died and honour their memory.

How do we support one another in this amazing and rewarding work that we do? It has always been my hope that this blog can serve that role in some small way – by letting other volunteers know that they are not alone in their experiences. For those of us who work in residential hospices, debriefing with your “replacement” at the end of your shift can be helpful. I will often take the time to check in with the receptionist on the front desk to see how she’s doing, and to tell her how much I appreciate the essential role she plays.

I’d love to hear from others about how they support themselves and their fellow volunteers. Meanwhile, I just want to bow to all of the volunteers who are reading this blog (I am a Buddhist, after all) for the wonderful work that they do.

 

 

 

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