Posts Tagged ‘conversations’

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:



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When I was in the volunteer training course 14 years ago, we were taught that it was strictly forbidden to ever talk about our own experiences with the death of a family member. Since a great many people come to hospice volunteer after the death of someone they love, it was (and is) wise advice. For the same reason, we were (in my day) not allowed to take the course until at least a year had elapsed since a death in our lives. That period is now two years and it is designed to ensure that the prospective volunteer has time to come to terms with their own loss, before spending time with dying people and their families.

I began volunteering four years after my sister died, and, for the most part, I had no difficulty adhering to the prohibition about remaining silent about what had brought me to hospice. Understandably, both families and the patients themselves are focussed on their own situation and my intruding with my own story would be an unnecessary and unhelpful distraction from their own lives.

Occasionally, though, someone would ask me why I had started volunteering in the hospice. And as the years have worn on, that question has become more and more common. In part, it’s the corollary to my answer to their question, “How long have you been volunteering here?”  When I tell them I’ve been at hospice 14 years, they look at me in amazement, as if trying to imagine what would keep someone there for so long.

“What brought you here?” people increasingly ask me.

Each time I pause, remembering the rule against talking about ourselves. But increasingly I find myself telling the truth.

“My sister died many years ago, and I was one of her primary caregivers,” I say.

Sometimes they ask me if my sister died at the hospice. “No,” I say. “Not here. In Toronto.”

They rarely ask me anything else. Often they will tell me it must be a wonderful place to volunteer.

“It’s great to know that I can make a difference in people’s lives,” I say, as I set about to make another pot of coffee or load the dishwasher. (These conversations almost always happen in the kitchen, a place of brief refuge for family members before they return to their loved one’s bedside.)

I rarely talk about these conversations. I suspect they are still against the rules. And yet, I have come to feel that providing an honest answer can be very reassuring to people in this midst of one of the hardest experiences of their lives. My honest answer tells them that I have survived the loss of someone I loved deeply and that they can too. My answer tells them that something valuable can come from all this suffering. My answer tells them that I am the “real deal” – a person who has experienced death first hand. In some measure, I “get” what they are going through. And in some way that makes me safe.

I wonder how other volunteers deal with these questions. We don’t often have the chance to talk about such things. In my first few years, I was always buddied with another volunteer and we would sometimes talk as we went about our work. But now I work alone. Our meetings are taken up with other issues – and besides, I’ve always harboured a fear that I might be “fired” if I admitted to my honesty.

In the end, I look upon these moments as tender exchanges between human beings – human beings with feelings, I think I called us, a few posts ago. I am who I am at hospice because of my experiences with death and dying. As my sister used to say, “you’re going to be an expert at this by the time you’re done with me!” I’m not an expert at death, of course, nor do I want to be. I want to be a caring, compassionate human being, reaching out to help people at this difficult, transformative time in their lives. I wouldn’t have it any other way.

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