Choosing to Live, Choosing to Die
What would my mother have done? [And why am I so sad to see the final proofs of my new book?]
The Advanced Reading Copy (ARC) of my new book arrived yesterday and I think that’s why my mother haunted my dreams last night. She pushed me off the roof of a church in one nightmare and locked me out of the house in another. I’m sure a therapist would have a field day with those dreams.
What I can tell you is this — seeing the book brings back vivid memories of challenging times.
Usually, the arrival of the ARC is cause for celebration. Holding the not-quite-ready-for-the-world copy is thrilling! It’s the first time I get to hold something that’s actually book-shaped in my hands rather than poring over digital files or poor-quality printouts from my ancient laser printer.
Yes, the index is missing and the interior photos and illustrations are in black and white (instead of color, as planned for the final edition), and there are a few typos that have yet to be caught and cleaned up, but it’s close enough to its final iteration that book reviewers and key potential purchasers will see copies in advance of the book’s actual release a bit later this year.
This ARC, though, made me sad all over again. Not because there’s anything wrong with the book per se — I mean, every time a new book comes out I see all the things I’d like to change — but because this book forced me to go back and revisit one of the most challenging times I’ve yet experienced.
What Do You Do When a Loved One Asks the Impossible?
“If I develop Alzheimer’s, take me out back and shoot me.”
If I had a dollar for every time my mother said that to me when I was a teenager and young adult, well — I’d be looking at early retirement by now. Maybe not quite, but the point is, for decades Mom lived in a low-key state of dread worrying that one day she might develop dementia.
That was a big deal for a woman who was highly intelligent and very social. She watched as a friend cared for her ever-less-lucid husband and repeated her request to me. “I would hate to put anyone through that,” she added.
She read about the dementias and several times remarked, “They are diseases of the beholder.” Little did I know how right she would be.
At the time though, as we tend to do, we brushed off the remarks and laughed.
That is until my mother began to exhibit some truly bizarre and disturbing behaviors. There’s a long story in here which I won’t go into right now (yes, there’s a memoir coming), but after a couple of years of wondering ‘is this just Mom hitting menopause and becoming even more extravagantly herself?’ I finally insisted she have some testing done.
After several visits to specialists, we had a diagnosis of Pick’s disease, a bizarre early-onset form of dementia that first attacks the frontal lobes, moves into the temporal lobes and eventually (as do all the dementias) kills the sufferer.
Mom was in her second half of her 50s at that point, more or less the age I am now. She would be dead before her 65th birthday.
That request of hers, steeped in premonition as it seemed to have been, haunted me while she was still alive. Had she known, years earlier, that her cogs were beginning to slip? Was she actually asking me to prepare to end her life when she was no longer able to do so?
When Mom was ill and I was caring for her, MAiD (Medical Assistance in Dying) was not legal in Canada. Had I given her an overdose of meds or pushed her down the stairs or found some other way to do her in I would have been guilty of murder. And, murder is clearly wrong — right?
So why did I feel so guilty when I protected her from falling, fed her nutritious meals, took away her car keys and kept her away from matches (Mom became quite the pyromaniac as her illness developed). Because I’m pretty sure the way she slipped away, said truly cruel and bizarre things to all of us (including her beloved granddaughter), the way she went after complete strangers — either to proposition them or to berate them for being too fat — was not the way Mom wanted to live the last years of her life.
When it was no longer possible to keep her safe at home, we had to make the heart-breaking decision to move her to an extended care facility adjoining our local rural hospital. The guilt and remorse we felt each time we made the drive to see her was equaled only by the gut-wrenching pain of her mute stare into space or a dismissive wave of her hand as she sent us away. And by us, I mean my father and me who tried to visit her as often as we could but …
…if there was anything even worse than visiting my mother during her final months it was doing so with my father whose heart broke afresh each time we pulled into the parking lot and once again when we pulled out.
After Mom died, the work of Right to Die activists in Canada continued and in 2015 the country overturned the law making it illegal to provide medical assistance in dying. We are still figuring out the finer points of how to apply new laws fairly and in such a way that we protect the most vulnerable in our society.
A few years back I was chatting with my editor, Sarah Harvey about difficult topics to wrap one’s head around. This was in the context of a new series of books grappling with serious issues and aimed at teenagers being published by Orca Book Publishers in BC. I mentioned assisted dying. Sarah knew a bit about my mother’s story. “Write a proposal,” Sarah said. I did. Orca sent me a contract. I started researching in earnest.
The process of writing the book, Choosing to Live, Choosing to Die: The Complexities of Assisted Dying was challenging (to say the least). Not only is this a subject that is impacted by all the messy dimensions of life: religion, politics, medicine, law, personal choice, social responsibility, ethics, morals, and values… this is a field that’s being examined in many places around the world. The landscape is shifting day by day. Writing about assisted death was a moving target.
There I was in the middle of it all — having chosen not to do my mother in, but wondering if I should have made a different decision.
I’ve often wondered what my outspoken, strong-willed, opinionated and utterly pragmatic mother would have done had our roles been reversed. I’ll never know, of course, but what I could do a dozen years after her passing was to write this book and try to pull together the arguments on all sides and present them as fairly as possible.
I’m reading the final proofs now, hoping to catch any glaring errors (so far, I’ve found a missing question mark, and two typos, but that’s about it). I wonder if the book will be useful, if it will resonate with any of the teen readers it’s aimed at.
We shall see, I suppose. At this point, it’s all pretty much out of my hands.
This is always a bit of a nerve-wracking time in a book’s birthing process. It’s too late to change much — too late to pull back and start again.
So, yeah — I’m sad to see the book because of all the emotional angst that lies behind it. And yet, I’m thrilled to be part of this conversation about death, dying, and end-of-life decisions.
I’d like to believe my mother would have been proud, too.