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.

Aging and Dying As a Crescendo at the End of Life

My godson (a thoughtful, kind and generous young man) has just shared a TED Talk with me. It’s about palliative care and our need to re-think and re-design our approaches to dying …. the systems as well as the bricks and mortar. We need a design that embodies caring, compassion, dignity, and beneficence…a design that celebrates life as we prepare for death.

Have a listen to this 19 minute clip….

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.

 

 

 

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.

 

 

Autumn’s Grace Celebration – October 26, 2013

Thank you to Mary and Anton Davies for hosting a wonderful celebration with friends from University of Toronto Schools of Engineering and Nursing (7T2 & 7T3 & 7T7). It was a joyful evening. I think the best feature of having  a book published is hearing how the story I chose to tell resonates with other people’s lives. Keep those stories coming please!

Photos have been posted under Photos of Friends at Various Celebrations.

A Student Nurse Comments on Autumn’s Grace

One of the lovely experiences of having a novel published is having people share their impressions, and then take the time to  tell me their own stories. Both are gratifying because at many times during the writing of the manuscript I would stop and say “Why am I doing this? Does the world really need one more book?”  What kept me motivated were my goals. They were:

  1. to start conversations  within families, and among friends and neighbors about how we manage end-of-life care
  2. to influence positive changes in the provision of palliative care (more skilled practitioners, more home support, more residential hospice care)
  3. to have Autumn’s Grace appear as a recommendation on the reading lists of students in health care programs.

So…it was heartening to receive a letter that had been written to my sister by a young woman beginning her third year of nursing school. I am sharing it below with her permission:

Dear Barb,

I just finished reading your sister’s novel, Autumn’s Grace. I very much enjoyed reading it and found it an interesting piece of literature, especially as a nursing student. In my nursing curriculum at [name of a Canadian University]  the topic of palliative care is quite neglected, I think we had one lecture on palliative care last year (2nd year). It seemed to be a difficult topic to teach as our professor did not have any experience with palliative work and we do not have any clinical practice in that field of nursing.

I thought Autumn’s Grace did an excellent job at describing the struggles with palliative care (from both the family’s perspective and health care perspective) and really opened my eyes to an area of nursing I had never thought about. I learned many important lessons that I hope to adopt into my own nursing practice, such as maintaining quality of life till the very end, caring for not only the patient but the family as well and that the healthcare system needs to be constantly changing and improving and not to simply accept the minimum standard healthcare practices. Also that first impressions and how I dress/look is very important too!

I just wanted to let you know how glad I am that I read the novel and I think it will improve/change my own nursing practice, not only when I graduate but at clinical too. Food for thought!

I was wondering where I could get 4-5 copies of the book? Online? Or at Chapters or Indigo? I want to purchase some copies so I can circulate them within my nursing class. I think my classmates will benefit from reading the novel and that they will be interested in the topic too! 

If you wouldn’t mind passing this email along to Bonnie please? I would like her to know how much I enjoyed and benefited from her novel!

Sincerely,
Elizabeth

I am delighted that Elizabeth registered the need to be addressing palliative care as a family care-giving experience. When my father was diagnosed,  we were fortunate to have a healthy mother and six like-minded siblings to share the emotional and care-giving burden. That was not the case with my husband’s parents. He is an only child and the care-giving was managed between the two of us. It was strenuous in the extreme to add this care-giving component into a family life that had us both fully committed on other fronts. Having said that, we would commit to it again in a heart-beat. There were positive outcomes for our sons; there were tender expressions of love; there were stories to be told. And these things happened during a period where we struggled to find the support that we needed,  to provide the support my husband’s  parents needed. But what if we had not had the personal resources to hire in help? What if there had been another sibling who had conflicting views of how to manage? What if  my in-laws’ family doctor had not been on-side?

The Campbell Family and their experience is, I am learning through discussions with readers, more typical than even I had imagined. As a society we spend time preparing for child-birth and learning how to care for babies and toddlers, yet we spend almost no time  learning how to manage the end-of-life. It is unfortunate. By focusing on only one end of the life journey, we risk limiting our own personal development.

I look forward to hearing how your conversations are developing!

Novel On End Of Life Care A Graceful Debut For Carlisle Author

Some weeks ago, Brenda Jefferies of the Flamborough Review interviewed me. Despite the fact that my mouth was dry with anxiety, she put me at ease. It felt more like a conversation than an interview. Thank you Brenda!

(p.s. Brenda also takes great photos. Those of you who know me, know how hard it is to find one with open eyes!)

Follow the link to read the full article…

A Graceful Debut Novel