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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

 

Food is love

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.

Hospice Humour

When I first began volunteering in hospice, I imagined that it would be a very sad and somber place. How could it not be, given that it’s a place where people come to die? I imagined that people would speak in hushed tones, people would be routinely sobbing in the halls, and laughter would rarely be heard.

From the first time I entered the residence, I quickly learned how wrong I had been. From receiving hugs of welcome from the staff and my new hospice buddy, to joking with a resident as we looked through her photo album, I learned that hospice was also a place where people were living fully until they died. Over the years, I’ve heard countless jokes and silly stories, I’ve watched comedies on television, and I’ve joked about Jell-o, my pathetic attempts at making poached eggs, and my height (4′ 10 1/2″). I’ve seen residents wearing Santa hats and sharing Christmas festivities and singing songs with their families and staff.

A small example. Earlier this week I popped in to say hello to Sam (a new resident) and his visitor (who, it turned out, I knew from many years ago). The visitor told me that Sam was very impressed that we have some male volunteers – and even a man who played the guitar and sang.

“You should sing for us,” Sam said.

I paused, not sure how to respond, since I tend to reserve my singing for patients who are actively dying.

“I do sing,” I finally said, “though it’s usually much closer to the end, and I don’t think you’re in any hurry to get there!”

Sam and his visitor broke into gales of laughter – relieving any concern I had that I’d said something inappropriate.

Yes, compared to a hospital, the hospice does tend to be quieter – much less hustle and bustle and busyness. But it is also filled with life and love, compassion and caring – and laughter. And that’s another reason why I am a hospice volunteer.

 

https://www.thestar.com/opinion/commentary/2016/08/30/first-step-to-improving-palliative-care-change-its-name.html

A recent article in the Toronto Star suggests that we should change the name of palliative care – perhaps to supportive care – in order to encourage people to seek out care early on in their illness. I’ve seen similar articles in the US as well, arguing that palliative care and hospice care scare people off – presumably because of their association with death.

As an historian and long-time hospice volunteer, I think we should celebrate the contribution that Canadians have made to end of life care. That includes celebrating Dr. Balfour Mount, the pioneering Montreal physician who coined the term palliative care back in the 1975. I’m proud of what we’ve accomplished in Canada and I’m happy to tell people about it.

What do you think?

 

 

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/

 

 

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