Jody’s story: Had MAID been an option, my life would be different

Jody Lehr Turco watched her mother battle cancer and suffer through tremendous pain before passing away suddenly. In this powerful blog post, she reflects on what it would have meant to her mother and her family to have medical assistance in dying (MAID) as an option, and why more families should discuss end of life before confronting an illness or accident.

I left my mother’s hospital bedside on Valentines Day 2002, telling her, “I will see you later.” I was going to return that evening. At this time, my first child, then a six-week-old baby, cried every evening until three or four in the morning. After her needs, I then tried to tend to my mother’s. How I did so on such little sleep, I have no idea. This day, Valentine’s Day, I thought I would make a nice supper for my husband, finally putting him first. To my surprise, he didn’t come home for supper, so I fed my father, as he needed care too and had again found himself at my door. He was my mother’s caregiver when she was at home, and he needed support as well.

My mother was battling cancer after being diagnosed in 2000. She fought for the first while, taking supplements and following a strict diet. She did well and the tumors shrunk, but eventually I believe her mental health dragged her down. My parents lived in an isolated hamlet and, being alone for most of her days, I think her deterioration was due to her reflection upon her abusive childhood and trauma in her life. Regardless, her children were all grown, and to our dismay, the tumors soon grew and had spread in 2001. She told a good family friend of ours that she wanted to spend Christmas with her family, see her first granddaughter be born, then she would leave this world as she was done here. The ironic thing was that I never knew I was having a girl. Six grandsons prior, perhaps she was guessing, but perhaps she knew, somehow.

My mom was in and out of the hospital, and my new baby and I often visited her as she lay in her hospital bed in her living room. Although my daughter never slept for me, I would lay her with my mom, and she would sleep in her arms. I knew I could help my parents out at their house and get rest as my baby was content with her grandma.

My mother was soon deteriorating and in physical need, and so my sister had her move into her house. She stayed there for short time, until one day my mom said she was having a hard time breathing. My sister called the ambulance and she was admitted once again. No matter how frail she became, I found that I was in denial, never seeing her death in my future because I needed her. I was a new mom.

When I visited her on Valentine’s day, she was in a “normal” hospital room, and out of breath, saying she needed to rest. My daughter, just shy of six weeks old, was dressed all in red and pink. However, she had a runny nose so couldn’t rest with Grandma that day. After I left to get my Valentine’s Day supper ready at home, I didn’t know they would be moving her into a palliative care room, nor did I know that they would be giving her morphine to sedate her. How did I not know the end was so near?

Not returning the evening of Valentines Day because it was too late to visit, I returned early the day after. I still had it in my head that we could take her out on Family Day weekend and celebrate, having a family barbeque all together. When I got to the hospital, I learned of her room change, and it was comforting. There were rocking chairs to breast feed in, my calm mother resting as she should, as I could see her weakness and with no strength to even open her eyes. Not a word was shared with her that day. I don’t recall the room being defined as palliative care and thought maybe it just had more room for us as a family. It was this day that the doctors wanted all family to be there, although I was still in disbelief as we waited for the oldest of us three girls to arrive.

It was that afternoon that changed my life as my mom awoke, pulling at her oxygen and intravenous, with each weakened breath, gasping and puffing, saying something similar to what we thought was “go pee.” We attempted to get her out of her bed, but still she was unsettled. That wasn’t what she wanted. She refused to have her oxygen on, and her intravenous was not on her list of priorities as she fought to remove it all. A nurse came to the room and said they were giving her more morphine to help settle her. As we held her hands and told her it’s ok, just to relax, trying to soothe her, I could see my Dad trying to figure out what was happening. This was his life. All he ever knew, and we soon figured out she was saying “help me!”

Shortly after her fight to be free and a shot of morphine, we could soon relax again as she rested, and we awaited the arrival of my eldest sister. The nurse tended to Mom, placing the stethoscope to her chest and said, “she’s gone.” I honestly felt my heart drop and some unbelievable feelings of terror and fright burrowed inside me. My legs grew weak and I couldn’t catch my breath as I looked at her face still in a gasping expression, scared and sick. This wasn’t supposed to be the day! I need her! My Dad, who I have never seen cry, threw something across the room and burst into tears, swearing. The shock for all of us that day will forever be a memory we cannot forget.

Why is death not talked about? Why was a plan not discussed as a family? Why didn’t I ask her if she felt like her time was coming and if she was scared to die? Why me, when I needed her to help with my new baby? Why do we assume we have more time? If only end-of-life care had been discussed with us as a family. Why does it seem we were all in denial, like she would be around forever?

My mom’s generation was strong, and she was taught to move through life with abuse and neglect, not discussing feelings. Why wasn’t death an open discussion with our family? Had end-of-life care been an open discussion, we would have known her time was coming sooner than we thought. How long was she in pain and to what degree? If there had been the option for medical assistance in dying, might she have chosen that route? I am unsure she would have, although if she had, my memory of her death could recall a calm passing with people she loved surrounding her, peacefully drifting off to the spirit world, leaving her frail, contaminated body.  

My heart still breaks as I cannot unsee that vivid day, reflecting on the dreadful, aggressive death my sixty-year-old mother endured. If only death was openly talked about, and if only MAID had been an option then, she could have died with dignity.