Kristin Raworth: MAiD gave my stepmother a good death after a hard, slow decline
How do you deal with knowing the date and time when your parent will die?
By: Kristin Raworth
The first warning that something was wrong came more than 10 years ago. We didn’t recognize it for what it was.
My stepmother started to experience moments of weakness. She felt heavy. She felt like something was wrong. And nobody listened. I am ashamed to say I didn’t listen. She had suffered from anxiety for decades. It was easy, even natural, for us to assume that what she was telling us was another manifestation of that. Her own doctors didn’t listen either; they usually just doubled her anxiety medication or they wrote off her concerns. She didn't get any real medical attention at all until she fell down a flight of stairs and seriously hurt herself, and even then it wasn’t the testing she required. She was given mental-health support and electroshock treatments which the doctors said would help stabilize her.
The entire time that doctors were ignoring her medical issues and dismissing it as anxiety or depression, a period of literally three or four years, she was actually experiencing more and more severe symptoms of Parkinson’s Disease, multiple-system atrophy (MSA), specifically.
MSA is one of a series of conditions referred to as “Parkinson’s Plus” or “atypical Parkinson’s” — about 15 per cent of Parkinson’s cases will fit into these broad categories. It is degenerative like Parkinson’s but advances far more rapidly and more aggressively attacks the brain. It is also harder to treat. By the time my stepmother was finally diagnosed she was almost completely unable to walk. She struggled to eat or to speak at times. The doctors told us most people who suffer from MSA die from choking in their sleep because they lose the ability to swallow. Over the 10 years she suffered, she was transformed from one of the most vibrant and intense women I have ever known to a woman who endured pain with every breath. She could feel her body failing and she couldn’t do anything to cure it. She knew it was never going to get better. She hurt every single minute of the last few years of her life.
A year ago my family started to discuss medical assistance in dying.
When the Liberal government changed the criminal code to allow MAiD, I remember approving in a general sense, thinking very objectively that it was a good thing for people who were suffering, without ever even considering that it would one day be utilized by someone within my own family. Having gone through it, I can say with confidence that the process wasn’t what I expected. I knew it was legal, but I didn’t know what it was like. I do now. And I’m glad it was an option.
The process was more complicated than I’d imagined. We needed two doctors and a psychiatrist to examine my stepmother and determine that she was in enough pain and in a state of sufficient decline to meet the legal requirements. That meant exam after exam after exam. I have to admit that while this was happening, even when I was there to support her and my father, I couldn’t believe it was real. I couldn’t accept that this would end with my stepmother’s death. A month or so ago, my dad and I went for dinner. My sister was with my stepmother that night, and at dinner, my dad told me that my stepmother’s application had been approved. She’d been accepted. She met the criteria.
I understood that, on an intellectual level but I didn’t think about it more than that. I couldn’t think about it. I had work. I had my own life. I tried to just think this was something for later, not now.
Being approved means just that — you can use MAiD, but you aren’t obligated to, or bound to any particular schedule. So at first, not much had changed. I bought her a Christmas gift. We talked about what she wanted for dinner Christmas Eve.
Then she fell again.
She had gotten up in the night while my father was asleep. She tried to walk even though she was in a wheelchair. She fell and injured herself. She had a black eye and she had a cut on her forehead that needed to be stitched up. We knew that she could not keep living at home. So we started looking at options for her, a place she could receive the kind of round-the-clock care she needed.
A few days later, I received a call from my father. The police were there. My stepmother had told her caregivers she was afraid of him. My father hadn’t hurt her, but he had to keep her in bed to ensure she didn’t hurt herself. She had seen that as aggressive. When I got there it was clear that her mental condition was starting to deteriorate. Her memory was beginning to fail. She would have moments of confusion about where she was, or even who she was. Her behaviour was becoming increasingly erratic. This can happen with MSA, and though she was still mostly coherent, most of the time, we knew where this would eventually lead. I stayed the night with them as my father made an appointment to talk to the MAiD doctors while my sister booked a flight to come home.
I don’t know what I expected to happen next, to be honest. We knew that her ability to provide active consent, as required by the law, was declining. It was clear that, in the very near future — months? weeks? — she would no longer be coherent enough to legally request MAiD. Canadian law does not permit so-called “advanced directives,” where someone can authorize euthanasia in the event that they become so cognitively impaired that they lose the ability to manage their own affairs. As much as we wanted to pretend otherwise, it was no longer possible to ignore her rapid mental decline. So my father and stepmother called the doctors and did a consult. On that Saturday I ran some errands and came home and started watching a stupid show on Netflix when my brother texted me. “It's December 2nd, at 3 p.m.”
My whole world stopped.
How do you deal with knowing the date and time when your parent will die? The next few days passed in a blur. I told my boss I needed the week off. I cancelled plans. Having no time or energy for tact, I just said, “My stepmother is dying on Thursday.” With so little time left, it was decided that she could stay at home. I moved in with my parents for the week to help with her care. My stepmother would get up about seven times a night so my sister and I would trade off to make sure my father got some sleep. In the daylight hours it was a haze of friends coming to say goodbye, buying the dress she wished to wear the day-of and constant visits with my siblings and their kids. Every minute felt so incredibly precious, and so fleeting.
On the Tuesday before everyone was there. We had not all been together like that since the pandemic. Because we are French there was a lot of meat and cheese and wine. She was okay that night, she was present and talking a bit. It was so easy in that moment to forget, for one blissful moment, that we only had two days left together.
I cannot explain the weight of anticipatory grief. We all knew it was coming but we just couldn’t let it hit us then. Because we just wanted to be in that moment where our family was still whole.
I couldn’t sleep the night before. I had been up with my stepmother until 3:30 and at 6 a.m. I just gave up. I had to go to my apartment and feed my cats and shower. It would be the one moment that day where I would be alone and try to feel what was going to happen. When I got back there were so many things to do. I had to buy food for everyone, take the dog out, and help my dad email every person he has ever met to update them. I had to help my stepmother put on the dress we had bought her. My sister-in-law did her makeup and hair. She looked stunning.
Then it was 3 p.m.
The doctor and a nurse came. They went through what the procedure would be and then asked for her consent. The nurse prepped her while the doctor prepared the needles. He needed something to lay them on and my dad gave him this old dessert tray they had which he didn’t like because my stepmom got it from her first marriage. We all stood there, my siblings, my in-laws, my nephew, and none of us knew what to do or say. My dad made bad jokes.
We went into her bedroom and we held her, we played her Edith Piaf, we told her how much we loved her, and then the doctor gave her the first injection and she was asleep. Within five minutes she was gone.
I am so blessed to have been her daughter. I am the person I am because she taught me how to be tough. She taught me to fight like hell for what I want. And she wanted this. She wanted an end to the pain, and some control. She knew that there was no hope for a recovery and that her only future was one where she was in more pain and losing more of herself every day. Because of MAiD, she had another option, and she took it.
As I said above, I supported MAiD in a general, vague way, long before my family looked into it. I’ve lived through it now and I’ve seen it up close. It wasn’t exactly what I imagined, but like my stepmother, I am glad the choice was available.
MAiD is controversial, and I understand why. No one should ever take these decisions lightly or be afraid to consider and even reconsider their opinions. All I can say again is that she was glad she had a choice and I’m glad she had one, too. Maybe if more people understood stories like my family’s they would see this issue differently and they would understand that while the grief is massive, given the reality of her relentless disease, the most supportive thing we could do for this woman we loved so dearly was help her end her pain on her terms, at home, surrounded by the people she loved. Not everyone gets a good death. My stepmother did.
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