MJ’s story: What we didn’t expect in my mom’s journey with assisted dying
Personal Stories | August 2, 2019 | Dying With Dignity Canada
MJ remembers her mother, Linda, as a strong woman who was always taking care of others. From her childhood in Quebec City to Montreal, MJ remembers Linda as a fiercely independent woman with a caring heart. Once Linda was diagnosed with lung cancer, however, she struggled through pain and ultimately made the decision to access medical assistance in dying (MAID). In this blog, MJ shares her mother’s story, and what it was like for her and her siblings to say goodbye.
Editor’s Note: Names have been changed to protect the family’s privacy
Mom passed away with medical assistance on May 15, 2017. It was her decision and she was relieved to be able to choose the procedure. It was hard to accept that I had to say goodbye, but it was easier knowing it was what she wanted and would end her suffering. However, there is still so much that I need to process about the experience. I hope that by sharing this story with you, I’m able to give others some things to think about as medical assistance in dying (MAID) is accessed by more and more people across the country.
My mother Linda was a caregiver for her children, grandchildren, ex-husband, and siblings. She helped her sisters during their struggles with breast cancer and dementia. She also cared for her brother and was there for her brother-in-law through his struggle with lung cancer and eventual death. Even though my mother had suffered through an unamicable divorce with my father, she helped my sister care for our father and was with him at the last moment before his death in 2005.
MJ’s mom was always there for others. She constantly volunteered her time and efforts, including at MJ’s school library.
Mom was a homemaker until I was seven years old but went back to work to help put food on the table. She was very smart and her childhood dream was to become a pharmacist, but in those days, that wasn’t a choice available to women. She became a nurse instead and worked in palliative care, emergency rooms, psychiatric wards — almost all different areas of medicine, though she most enjoyed working in obstetrics. Having cared for so many people in so many different ways, she was very familiar with how people looked and felt at the end of their lives.
As we got older, my mom started to do more things outside the house when she wasn’t working. She did Meals on Wheels, sold Amway, and volunteered at the school library. When I was preparing for university, she started taking swimming lessons. Near the end, when she was getting ready to move to her palliative care centre, she told me how much she missed swimming and of the friends she had made when going to the pool. She told me about this little old lady who used to watch people swim every day. After a few months, this elderly woman decided to get into the water herself. She told my mom later that watching her every day was inspiration to start swimming. My mom easily made friends by volunteering and putting herself “out there.” She always encouraged other people and led by example, a vibrant demonstration of her deep caring for her loved ones and community.
Linda was very active and swam three to four times a week.
However, things really changed on September 21, 2016, when I sat with my mom in her doctor’s office and watched our world collapse. Mom was diagnosed with lung cancer. From then until the end, I watched my mom change from the independent caregiver she always had been to becoming the one needing care. She required someone to drive her around and to bring her medication. Later, she needed someone to bathe her and to change her diaper. It was difficult for her as her mind never strayed, even with all the medicine. She was proud and hated the loss of independence and dignity.
My mom suffered for at least three months from what we thought was sciatica but turned out to be bone cancer. When she heard the diagnosis, I think her mind was made up already. Although it would only prolong her life for a little bit, she agreed to try chemotherapy, but it made her so sick that we almost lost her to an infection. When we finally had a conversation about it, I wasn’t surprised when she said she was going to ask for assisted dying. She said, “I have seen so many people go, and I don’t want people to remember me as a skeleton, or to say, ‘she fought until the end’ because I wouldn’t be fighting; I will never get better.”
The decision was challenging for the family. Looking back, I realize we are not very expressive when it comes to emotions. I didn’t hear back from my siblings when I sent them the information I found about the process, even up until the day it happened. I kept letting them know: if you need to talk to someone about this, it doesn’t have to be me, but please take care of yourself and speak with mom about anything you’d like to make peace with, if that’s what you feel you need to do.
Linda loved animals, but she especially loved all cats.
I was by my mother’s side on May 4th, when she made the request for MAID. There is a mandatory waiting period of 10 clear days from the date of your approved request until you access medical assistance in dying. (Ed. Note: This waiting period can be set aside if both assessors agree that a person’s death or loss of capacity is imminent.) That put the date of her death at Mother’s Day; I immediately got up, and I said, “Please, it’s too difficult, I don’t want to connect Mother’s Day with your passing. Can you please wait one more day?” My mom said “yes,” and I’m grateful for that.
The date was set for May 15th. Ten days is a long time to wait for the day of the procedure. There was not a lot of clarity to help us understand the process. Every time my mom woke up, she would think it was the 15th, and would get so angry when she realized it wasn’t and would look at me like it was my fault that she was in so much pain. I understand it’s necessary to have a waiting period for the patient to be sure about the decision, but 10 days passed so slowly.
The day of the procedure finally arrived. The palliative care unit where my mom was staying didn’t approve of MAID, so we were forced to move to a room on a different floor of the building for my mom’s procedure. The room wasn’t furnished, but we brought in the bed and flowers. My mom was in a lot of pain, so they gave her something to ease her suffering. When she woke up, the doctor was there to do the final evaluation alone with her, and he asked us to step outside and wait for him. When the doctor walked out, he said, “She changed her mind. Your mom doesn’t want to go through this.”
Linda loved her plants — according to MJ, she could make anything grow.
My mother was scared. We went back in to talk with her, and told her that it was her decision, no matter what. We then faced the challenge of balancing her wishes with the knowledge that capacity loss may have been imminent — if she lost capacity to consent, she might have lost the option to access MAID. After careful consideration on her part, my mom decided to proceed that day.
After the doctor double-checked my mom’s wishes, he asked us to step out of the room again. Although he was an experienced and skilled specialist, the doctor was warned by my mom that her veins could be difficult to find, and he did not want to make a mistake while being watched by an audience. Unfortunately, it was not explained explicitly beforehand that she was being given something to calm down, so by the time we were called in the room, she was very groggy. She did not speak to us, or try to look at us, or maybe she couldn’t or didn’t want to.
A couple of days after the procedure, my sister told me she felt cheated that she did not get to say goodbye to mom. I didn’t know what to do. I said we could reach out to the ethics committee to suggest that healthcare professionals help the family and friends understand the procedure and steps involved. The difference was I was part of the process all along, through everything, and had many evenings to talk with my mom. My brother and my sister did not have the same opportunities. All I can do now is share this story and try to raise this concern for others in the future. We haven’t spoken about it since it happened, but I really want to help the next family, so that they don’t have to struggle with that feeling of loss and confusion that my sister carries with her.
Ultimately, I am happy my mother Linda was able to access medical assistance in dying. Though there were some complicated emotions for my siblings, I know it was what my mom wanted. I remember when I told my best friend that my mom would access MAID, she said, “Oh yeah, that’s your mom. She will stick her tongue out at death and say, ‘You’re not getting me the way you want — I’m going the way I want.’” And that’s exactly what she did.
Dying With Dignity Canada extends heartfelt thanks to MJ for sharing her mother’s important story.