"That moment ended her life and changed mine forever."
I am always so honoured when our members share their MAiD story with us. This post is no exception. I must confess, though, that this heartfelt submission is extra special to me. Jan, today marks five years since you said goodbye to your mum. While I did not have the pleasure of meeting her, I have grown to know her through your stories. Your dedication to ensuring that others who have experienced a MAiD death have a safe and supportive community around them through the grief journey is the reason we are here today. Bridge C-14 would not exist without your mum. Thank you for sharing this part of your story, for your honesty and vulnerability, and for trusting me to carry the torch.
Five years ago, a stranger walked into my mother’s room, inserted a needle into her arm while I sat holding her hand, and pushed the plunger on the syringe. That moment ended her life and changed mine forever.
It’s strange the things you remember when someone asks you to help them die. I remember what I was wearing. A bright peach dress and purple sandals. It was the day of my mother’s 78th birthday when she whispered the words to me, “I’m ready to die. Help me.” I knew one day she would ask that of me, but I wasn’t prepared for what that journey would leave me without at the end of it.
The year of my mum’s 40th birthday she lost both her parents within months of each other and her marriage ended. Almost overnight she became a single mother raising a five-year-old, with a full-time career and a mortgage to pay, and no one to turn to for support. I remember she said to me once that she wished my 40th year would be different. She didn’t get her wish.
The day before I turned 40 my mum was told she had Parkinson’s Disease. We sat that day in the doctor’s office staring at each other, as she passed her car keys to me under medical orders. I smiled at her and whispered; it’ll be okay. But in my heart, I knew it wouldn’t be.
We left that day in silence, neither of us knowing what to say and both of us knowing that something still wasn’t right. We moved quickly through the health care system, in part due to my loud mouth which ensured that mother would be treated with respect, as I demanded answers to explain her rapid decline in health. Over the next four weeks, I became her voice for care and spent every spare moment I had researching for answers.
The night before we went to her appointment with the neurologist to confirm her diagnosis, I was poring over her medical records and stumbled across a small note that read: suspected diagnosis progressive supranuclear palsy. The next day when it was confirmed, I held my hand over my mouth to stop my gasp of grief but it didn’t work. I cried that day in front of my mum for the first time since things started going sideways. She sat, looking at me glass-eyed during my brief moment of weakness. I still wonder what she was thinking but could no longer express to me. We walked in with hope and left with a death sentence.
Over the next 18 months, I became an advocate for my mum, fighting doctors for their attention. Her voice as her words began to fail her. Her support to make her body move when it didn’t want to. Her shoulder to lean on when she was scared. Her driver, her cook, her champion, her fighter, her banker, her translator, her resource.
PSP was her diagnosis, but it was not my mum. To me, my mum is fire and courage in high heels. She is dirt under my nails from an afternoon in the garden. She is the warmth in my belly from a good glass of scotch. She is road trips, long talks, and the giver of hugs that made everything okay again. She is not enough days and so much love it hurts. She is fine art, and good jazz and words on the page of a finally crafted novel. She is the woman who taught me what courage truly means.
She is the woman who received a community-based medically assisted death on October 3rd, 2016 allowing her to be the author of her own death by being able to control how it would happen. MAiD gave her back the one thing that PSP robbed her of - choice over her body. And her choice was to die.
For the last five years, I’ve tried to protect what was left of my heart after going through the MAiD process with Mum because my story isn’t the one that is told on the front page of the local paper. Instead, it is the story of a very damaged version of a once fearless woman, who struggles every day with the reality that I am the person who facilitated my mother’s death.
I was greeted by a cruel, malfunctioning community-based system. Where once I had been treated with respect, I was thrust into advocating against conscientious objection in private care, faith-based objections within the publicly funded care system, refusal to discuss or refer, unreturned phone calls, emails, text messages and an overwhelming response of scorn and judgement.
I was robbed of my right to spend my last days with my mother just being her daughter. Instead, I found myself being told that there was no support to be offered, and suddenly I was thrust into the responsibility of having to be my mother’s advocate and her MAiD team.
I demanded effective referral. Our effective referral was an unanswered voicemail left on a 1-877 number. I demanded assessment. Our assessments went ignored for weeks. I demanded help. Our help was being handed a phone book, and a list of requirements that was needed and told I would have to be responsible for completing. Hiring a private nurse to insert an IV line. Having a private psychological examination done, even though my mother was neither depressed or mentally incapacitated. Hiring a private doctor who would administer the procedure. For the 29 days, I had left with my mother, I spent 20 days fighting with the people who once where there for her care, but did not want to be there for her death.
MAiD for me was an isolating, heartbreaking and lonely journey that left me living in the shadows of grief. Afraid to speak publicly about what I faced for fear that it will be met with judgement and scorn. Because it eventually it was and those words spoken: shameful, selfish, unnatural. And when those words are spoken, the small flame in my heart that I was trying so desperately to keep lit, flickered and went dark. And I retreated further into the shadows. MAiD brings a natural uncomfortableness with it when it comes to grief and empathy. Because it is foreign to those who have not lived it.
Death from cancer brings pink ribbons and marches and community. Death from ALS brings viral fundraising campaigns and solidarity and hope.
Death from MAiD brings unwanted opinions, stigma and political rhetoric. And it brings double grief. For me, it brought a deep need to talk to others who have lived it. To share in a community of those who have lost their loved ones. To be understood and the understand others.
But what I found was silence. And what I was left with was the grief of losing the most important person in my life; followed by the grief of isolation living without a place to share openly my polarizing feelings of relief for my mother and guilt because of my forced involvement in her death.
When I watched my father take his last breath when I was 22, I felt helpless. When I watched my mother take her last breath when I was 41, I felt responsible.
I don’t see MAiD as a victory. I did not throw my fist in the air when she was granted permission to die. I still do not feel a call to rage around legalities and theories and ethics, hanging my soapbox like an albatross around my neck. Because those who rage, do so from a place of principle, not lived experience. And your principles are nothing more than a theory until you are called to put them into action.
And, I ask myself daily, if I had to walk this path again, would I?
MAiD is needed. It is the right thing to do for those who feel it is the right thing for them. It gave my mother a peaceful, quiet death instead of the one we knew was coming. It is the ultimate act of compassion and redemption that can be offered by the medical community. But I feel that I would be doing a disservice if I did not acknowledge that it is also a deeply painful, emotional and life altering process. A process that five years later, I still struggle to accept and live with.
Mum asked me to bury her on Mother’s Day and I kept that promise to her. The next week, I became pregnant and nine months later, a gorgeous baby girl came into my life with my mother’s eyes and her same fearless attitude. I’ve often wondered if my daughter was a gift that my Mum sent to me to say thank you for taking that journey with her.
Last week, as I was lost in thought about this upcoming anniversary of her death, a little hand rested on mine and my daughter looked at me with those big eyes and said, “Mummy, Nanny made me for you because she knew you’d be lonely.”
I cried in that moment. But for once, the tears that I shed were not just ones of sorrow and fatigue, but also of hope. Hope that I will find a way to feel whole again and be able to move forward from the memories that haunt me. Hope that I really did do the best I could have for my Mum. Hope that no other family member will have to experience a journey like mine. Hope that I made my Mum proud of me and still continue to even after telling this story. Because we all need something to have hope in, both the living and the dying.
- Jan Ditchfield, Founder of Bridge C-14