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Posts Tagged ‘families’

Last week, Canadians were shocked and saddened by the tragic circumstances surrounding the death of an Ottawa woman. An op-ed piece written by her husband in the Ottawa Citizen was followed by a radio interview on CBC’s Ottawa Morning. Here are the links to the article and radio story:

http://ottawacitizen.com/opinion/columnists/adams-what-my-dying-wife-and-i-never-knew-about-palliative-care

http://www.cbc.ca/news/canada/ottawa/programs/ottawamorning/palliative-care-1.4194365

The story provides graphic evidence of the shortcomings of palliative care in this country. As the Canadian Hospice Palliative Care Association has documented, only 17 to 35% of Canadians have access to hospice palliative care. Many factors result in that variation but even at the high point of 35%, the vast majority of Canadians are not receiving the care they need.

Those of us who have experienced palliative care can attest to the dramatic difference it can make in the lives of terminally ill patients and their families. As many experts have argued, palliative care should be available to patients from the onset of a life-threatening illness to help them deal with pain and other symptoms associated with their illness and to provide them with the knowledge needed to make informed choices.

When my sister was dying 20 years ago, there were (to my knowledge) no pain and symptom management teams or facilities we could access to help us with her care. It was our incredible good fortune to find an amazing palliative care nurse (through a visiting nursing service) who guided us through the final days. Her name was Isabelle (“Is a bell necessary on a bicycle?” she used to joke when I had trouble remembering her name) and she followed us from home to hospital when my sister had to be transferred. She patiently explained the significance of Cheyne-Stokes breathing (the “death rattle”) to a very frightened sister (me), offered non-judgmental advice on the choices we faced (e.g. whether oxygen might help), and reminded me that we were doing a great job.

Today, nurses like Isabelle are working in hospitals and residential hospices, and visiting patients in their homes (including long-term care facilities and retirement residences). They ease the journey towards death for both patients and their families. I wish everyone could have an Isabelle (or a Linda, Valerie, Marie, Esther … ) by their side at this difficult time in their lives.

In my view, there is nothing wrong with palliative care that greater commitment, education, financing, and access wouldn’t fix. We need greater emphasis on palliative care in medical schools and nursing programs. We need the federal government to truly commit to and fund an end of life strategy, and we need our provincial governments to ensure access to high quality hospice palliative care for all Canadians, regardless of where they live.

Until then, I fear that more people will experience the needless suffering that the article above describes. Let’s all work together to make sure that doesn’t happen.

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Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:

http://www.capecodtimes.com/news/20160918/authors-drawn-to-provincetown-book-festival#ReaderReaction

 

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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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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.

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Over the past few weeks, since I returned to the hospice after a few weeks away, I’ve found myself thinking about the phrase that forms the title of this post – everyone has a story. After being away not surprisingly, all of the residents are new to me. Other than the notes in the volunteer communication book, they are complete strangers to me. If the previous volunteer is able to brief me, I may learn a few more details about them – what they’ve eaten or drunk during the morning, who is visiting (or not), whether they are able to get up on their own. But as to the story of who they are – who they’ve been in their lives – what has driven them, brought them joy or terror or sadness or peace – I’m on my own. And chances are I’ll never really know.

And so, when I meet a patient who seems angry at everyone and everything, I might assume it’s because of past medical issues or unresolved relationships or regrets. Perhaps they’ve always been an angry person. But perhaps, it’s because they are terrified of what is to come – of dying – and they haven’t the words to express that yet.

I just don’t know. If I assume that the story is of an angry person, I might steer a wide berth around them, hoping to avoid a nasty encounter. If, on the other hand I realize they are afraid, I might offer to sit with them, whether in stillness or in quiet conversation.

Recently I found myself in the room of an elderly man about whom I knew nothing except his age and diagnosis. As I sat in the chair beside him, I could hear my mind racing away, trying to invent a story to fill in the blanks. What did he do for a living? What happened to his wife? Did he always live in Ottawa? Was he religious? None of these questions were answered in the personal information I received about him. And he was no longer able to talk with me. I almost persuaded myself that I needed to know these things in order to better serve him. Mercifully, I was able to settle myself down (and I thought he was the restless one!) and simply sit with him in silence. Here he was, a man who was dying, and I could simply be with him without knowing any of the story. In many respects, it no longer mattered.

The same holds true with the families we meet. We really don’t know what has caused an estrangement or a drifting apart. We shouldn’t be surprised when an ex-husband arrives to care for his dying former wife. I know I am sometimes taken aback by something I encounter, but I have to remind myself that I don’t know the background, the events, in essence, the story. Nor should I need to. These are people coming to terms with loss the best that they can. Most of the time I am in awe of people’s caring, love, and resilience in the face of incredibly difficult circumstances. My job is to help them, however I can, with non-judgement, compassion, and openness. For me, it’s a great practice which I can (and hopefully do) carry over into my life outside the hospice doors.

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It’s been almost a month since I last posted here. I’ve been madly writing away – having such a wonderful time writing, despite the heaviness of the topic. And now I am writing in Provincetown – the place where I have been coming to write every year since 2001. That year was a significant one for me – though of course I didn’t know it at the time. My sister had died four years before and I was, of course, still coming to terms with that huge loss in my life.

That spring, I started searching for a workshop where I could return to creative writing – something I’d more or less given up what with the demands of raising two children while teaching and doing academic writing. Someone or another (I honestly can’t remember!) I came across the Fine Arts Work Center, an amazing place started by writers and artists (including Grace Paley, and Stanley Kunitz among many others). I arrived here that year in late August, with my computer and some blank paper and not much else. And I started writing again.

Each summer I’ve returned here. It is a place with a tremendous history as an artists’ and writers’ colony. This weekend is the annual Tennessee Williams festival. Williams, Eugene O’Neil, Norman Mailer and of course Mary Oliver have all lived and written here by the sea. The one main street, Commercial St., is lined with art galleries of every description. Even if you’re not an artist (as I am not), the light and the water and the galleries and the air all inspire me to draw at least a little. But mostly I write.

And at the end of the day, I find my way to one of my favourite hangouts for a glass of wine and some editing time. Inevitably, people ask me what I’m writing about, and so the stories begin. Last evening I met a woman who sat with her best friend as she was dying. And has since sat with almost a dozen friends and family members. Everyone, it seems, has a story.

I’ll be glad to be back home in Ottawa early next week, but I’ll carry this place and its inspiration and my pile of writing back with me. Until the next time!

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