Palliative Care Coming To Waterdown Library on Thursday February 2nd

The next best thing after publishing a book is having people who admit to reading it! I’m fortunate that librarians at Hamilton Public Library have invited me to talk with their readers. Tomorrow,  Thursday February 3rd I will be speaking about the experience of writing a novel that addresses the joys and frustrations of palliative care.

Here’s how it’s billed:

Autumn’s Grace – Reflections on Writing a Family’s Journey Through Palliative Care.

Autumn's Grace Cover

Author and Registered Nurse, Bonnie Lendrum, could have chosen a lighter topic than palliative care for her first novel, but she didn’t. Instead, she chose to write about something that worried her…how we as a society manage end-of-life care. Lendrum will combine readings from Autumns’ Grace with observations on family dynamics, health care policy and practices. Like the novel, the talk will contain hearty doses of courage, humour and hope.

Consider this note to be an invitation that you may extend to friends and family to come to the  Hamilton Public Library, Waterdown Branch, 163 Dundas St. East, Waterdown, for 7:00 p.m. Thursday , February 2, 2017. Call the library to register (905-689-6269  x1021), or just plan to show up.

Bonnie Lendrum is the author of Autumn’s Grace, the story of how one family manages the experience of palliative care with hope and humor despite sibling conflicts, generational pulls and career demands.

Autumn’s Grace – at Audreys Books on June 5th

audresys-584Back in the 1950’s one of my Canadian heroes, Mel Hurtig,  was an Indie bookstore owner and publisher. In his Edmonton stores, authors could stage plays, perform readings and drink coffee with patrons. How cool was that?

This lucky author will be reading at one of these locations (10702 Jasper Avenue) on Sunday June 5th at 2:00. The bookstore is now named Audreys Books Ltd. It’s owned by two invincible spirits, Steve and Sharon Budnarchuk, who have made this author from the east feel quite welcome in the west.

Please tell friends and family to drop by on Sunday afternoon to say “Hello!” and to support these Indie Booksellers.

 

 

The Show Must Go On – Concussed Author Reads at the Lit Live Reading Series

 

 

photo (6)

John Lennon’s observation that “Life is what happens to you when you are busy making other plans,” was an apt mantra for me during the last 4 weeks. Nobody plans a concussion, but life happens. The holiday schedule had included conducting a family Christmas, hosting a post-Christmas gathering of neighbors at the cottage, celebrating a three day family New Year’s event, and then finishing off with a reading on January 4th at the Hamilton Lit Live Reading Series. Nothing went quite as planned.

My amazing husband and sons stepped in to to make Christmas happen; our sons hosted the neighbors up north on the 27th; and my wonderful family (husband, sons, mother, sister, nieces, and brother) made New Year’s an example of team effort.

With more than a little trepidation, I did manage to read at the Lit Live event in Hamilton. What you will see in the attached photo are the very big, and very red Vuarnet sunglasses (circa 1985). They have been perched on my nose for the past 4 weeks even as I lay in a dark bedroom. It’s not possible to overstate the sensitivity to light that one experiences with a concussion.

The Lit Live Committee has recorded the last two months of readings. Click  Lit Live Reading Series – Sunday January 4th, 2015 for the audio. Do listen to the clips from the poets. Their readings ranged from quirky and funny, to cerebral and spiritual. One of the delights of this series is the exposure to poetry.

What you will hear when you get to my clip is a rather strained voice. I was anxious for the better part of the day about the lighting, and about my ability to stand for 15 minutes. If I had thought about it, I would also have fretted about multi-tasking: holding a binder, reading words, and turning the pages. So… in the clip you will hear me fumbling at the end of the first page as I try to speak, read, hold the notes and turn the page. Fortunately my brain found an ‘e’ word (extemporaneous) before it found the ‘f’ word.

I dedicated the reading to the memory of Eric McGuiness, the Hamilton journalist who reported on environmental issues for the Hamilton Spectator. Eric provided an informed external voice to our community’s fight in north Flamborough. As we battled a quarry, he was fighting cancer. This past October he wrote:

I’m resigned to the fact that it [cancer] will kill me. What worries me most is how I will die.

If I wind up in a hospice rather than a hospital and if the symptoms can be controlled, perhaps a dignified, quick and peaceful death is possible. Or I could be one of the people who die slowly and painfully: unable to care for myself, pleading for an end to my suffering. Some people who are terminally ill see no choice but violent forms of death that are horrific to contemplate.

Eric died in Switzerland this past month where he could be assured of dying “as easily and humanely as a beloved family pet.”

I started writing Autumn’s Grace in the early 2000’s because I was profoundly disturbed by the state of palliative care in Canada. Fifteen years later, not much has happened to ease my worry. We talk about the subject, but I have yet to see substantive systemic change. Until end of life care is considered as important a public health issue as preparation and support for pregnancy and child birth, people will be faced with challenging choices at end of life. 

Photo credit: Gary Barwin

 

 

You’re all grown-up when…. it’s all up to you

 Centre piece by Chate- Anderson Designs

Remember being sixteen, getting your driver’s licence and thinking you were all grown- up? The card in your wallet brought freedom, as long as the gas tank was full when you returned the car to your parents’ garage.

That feeling of being grown-up may have lasted until you lost your virginity. In fifteen minutes you had been introduced to the mysteries of adulthood, but were left wondering, “Is that all there is? Could there be more to being an adult?”

And yes, there was more.

You cast your first ballot at the age of twenty-one and were finally taking part in the affairs of the country. This had to be what being grown-up was about.

But no. There was still more.

Like the time you received your first paycheque and saw deductions to the Canada Pension Plan. Here you were, just barely out of your teens and you were contributing to your security in old age – a very grown-up thing to do.

After a time you realized that ‘grown-up’ was an illusion. You continued to have these moments of milestone awareness when you married, when you bought your first house, and then again when you had your first child.

However, somewhere between that first child and that same child’s graduation from post-secondary school, a parent died. And that was when it hit you.

“Now, I’m grown-up. I am one of the eldest in my family. I’m it.”

And if, like me, you regressed while your parent was ill, wanting to be the child who did not have to deal with adult situations, it was a wake-up call. Grown-ups drive, vote, give birth, pay taxes, buy a house, pay down the mortgage, raise children and, grown-ups help their parents exit this world.

No one told me as I grew up that I would be helping a parent through an illness. That I would be sitting with that parent as the last breath was drawn. Or that I would be comforting the surviving parent. No one told me, or showed me, and so I was not prepared. And I was a registered nurse. If I wasn’t ready, then who was?

It’s a familiar situation. A parent becomes ill; the prognosis is grim. And squeezed into those free moments amongst the competing demands of children, careers, marriage, and caregiving they/we need to learn more than we ever wanted to know about dying.

But what if we normalized dying and death just as we have done pregnancy and childbirth?

If we considered dying to be part of life, palliative care would be introduced to high school health education classes.  Lessons about learning how to be present to, and caring for someone who is dying would co-exist with other content, like sex-education. The classes could have immediate benefit for some students. The minimal value of being present during the end stages of an illness is that it provides our children with a practice opportunity — long before they assume the mantle of family elder. At best, the experience of being present with several generations creates an opportunity for a family discussion about remembering, grieving, and preparing for end-of-life— while living each day to the fullest.

However, inclusion in high school curricula requires societal pre-cursors such as:

  • Advance Directives for End of Life Care that are discussed, written down, filed, and communicated with the family physician. (About 30% of Canadians have had the discussion — 16% have done something as a result.)
  • Palliative care content that is included in the curriculum of all medical and nursing schools. (There is still work to be done.)
  • Palliative care services that are well-funded and integrated into the health care system. (We’re not there yet.)

If we hope to fare better than our parents may have in their last weeks, days and moments, there is much work to be done. It’s up to us, because we are now the grown-ups.

This note was written to honour Stephanie Chate-Anderson, who with her mother and her brother managed her father’s last weeks, days, hours, and minutes, with grace, courage and love.

The arrangement in the photo was done by Stephanie Chate-Anderson for the launch of Autumn’s Grace.

 

 

 

Thank you to the Canadian Medical Association and Macleans Magazine

Across the country, Canadians were given a forum to discuss end-of-life care,  thanks to the Canadian Medical Association (CMA) and Macleans. The Town Hall style meetings were an inspired idea. I attended the meeting in Mississauga and was pleased to see the combination of structure and informality in the program. Participants could come away with a common vocabulary, a sense of having been heard, an appreciation of other points of view, and direction for personal action. All of this in a two hour period.  Within a month of the last town hall, the CMA has released its report, End of Life Care: A National Dialogue. It is essential reading for all families.

Perhaps the best feature of these Town Hall meetings is that the hot-button issues of euthanasia and physician-assisted dying were set into the much larger context of end of life care. That context includes discussion of  end-of- life wishes, the preparation of advance care directives, the art of communication and the science of symptom management.

As someone who gave much thought to end of life care in the course of writing Autumn’s Grace, and who continues to worry about palliative care in rural Canada, I was delighted to see that the CMA’s conclusions included the following items:

  • A national palliative care strategy should be developed
  • All Canadians should have access to appropriate palliative care services.
  • Funding for palliative and hospice care services should be increased.
  • More education about palliative approaches and as well as how to initiate discussions about advance care planning is required for medical students, residents and practicing physicians. (The CMA was addressing its own discipline, but I would add to the list: nursing students, practicing nurses, pharmacy students and practicing pharmacists, etc.) 

Thank you to Dr. Louis Hugo Francescutti, the panelists and Macleans for initiating a national dialogue that I hope will result in changes to practice, policy and funding for palliative care…in my lifetime.

 

 

We Can Do Better

Chapters Display

“Forget about planning your funeral; begin planning your end of life!”  That was the first response to my question, “What was your ‘takeaway’ from reading Autumn’s Grace?” as a recent discussion with The Neighbours’ Book Club was winding down.

There were nods around the room. The speaker continued, “I have started talking with the people I love about how I want my last days to be, and I ask them what they would like for theirs.”  It was a reaction that I did not anticipate as I was writing Autumn’s Grace.  At most, I had hoped that readers would vicariously, through the eyes and ears of Max, Marge, Jessie, Jane and Ethan, feel more informed about the challenges of diagnosis, treatment and care-taking. Maclean’s cross country conversations on  End of Life Care: A National Dialogue  have, I suspect, accelerated the interest in considering the issues, and for these fora I am grateful.

If individuals, couples, families and communities prepared for end-of-life as well as we do for pregnancy, childbirth and infant/child-development we might enter our last stage of life’s journey with less fear and more informed support.

The second response to my query was, “We can do better.”  This speaker was not suggesting that people (family members, health care professionals) and organizations (hospitals, community health) were mal-intended. She thought that perhaps individuals and organizations did not stop to examine recurring negative patterns, and adjust accordingly. Without being prescriptive, Autumn’s Grace shines a light on some opportunities for improvement.

Both responses resonated with me. In 2013, the Faculty of Nursing at University of Toronto dared alumnae to dream of better endings.*  Dr. Sioban Nelson, then Dean, noted that “until we see death and dying as part of the continuum of care, Canada will remain a poor place to die.” I agree. We can do better. Simply put, that was my motivation for writing Autumn’s Grace.

 

* See: Dare to Dream Of Better EndingsPulse Spring/Summer 2013, Volume 6, Number 1. Pulse  is the magazine for Alumnae of The Bloomberg School of Nursing.

 

 

Why A ‘Good Death’ Matters

Chalk it up to my age and life experiences if you will, but I do find that I spend more time now than I did in my thirties and forties thinking about how we die. Trust me. I am not being maudlin, nor melancholy. Angry and frustrated are more apt descriptors. So I have to say I am encouraged when I see more articles in the press on dying and death, like Sandra Martin’s in the Globe and Mail http://www.theglobeandmail.com/life/health-and-fitness/health/the-hospital/lifes-last-milestone-why-a-good-death-matters/article16896444/#dashboard/follows/ .

It’s through citizen action that we can raise awareness that our health care system, by and large, does not support good deaths. That is not a statement against doctors and nurses and all the other caring professionals. It’s a statement about how the system is organized, and how it is funded.

If we gave as much societal attention and funding to dying as we do to pregnancy, birthing and early childhood development then few of us would fear dying. And more of us would be equipped with the knowledge to help the people we love to die with grace. Margaret Mead once noted, “Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.” Her observation is as true today as when she wrote it in the last century. We need a quiet, or maybe not so quiet, revolution to support good deaths.