Patricia’s story: Choice in life and death

In response to the proposed amendments to MAID in Bill C-7, Kelly shared her mother Patricia’s story with the Senate. Patricia suffered for many years and died from the effects of Alzheimer’s disease and COPD. Kelly chose to share her story with DWDC to shed light on the impact that a diagnosis like Alzheimer’s disease can have on a family and their loved one. 

The story I am about to tell does not have a happy ending because a person died alone, in pain and terrified. If MAID had been available to her, the conclusion to the story could have been a gentler one.

As authors of our own stories, doesn’t it make sense that we be able to write our own endings?

My wonderful mother, Patricia Lindsay, was a loving, sweet woman who enjoyed spending time with her family. She adored her grandchildren, her pets and her cottage. She was happy, fun loving and liked by all who met her.

When her memory became a concern and she was subsequently diagnosed with Alzheimer’s disease, her life changed. She was only 70 years old. She sunk into depression as she considered what her next few years might be like. She had already been living with severe COPD and less than 24 per cent lung capacity. But that had never gotten her down. She managed her breathing issues with inhalers and retained her zest for life. But her dementia diagnosis was too much for her. She cried a lot. She worried about what was to come. She didn’t want to leave her house and she repeatedly said that she wished she was dead. Every day. Sometimes, as her ability to speak was dwindling, she would call out, ‘Help’, or ‘Mom’. There was nothing we could do to make her better, nothing to do to make her more comfortable. It was beyond heart wrenching.

My parents had been married since they were teenagers. My father became my mom’s caregiver. She was afraid to be sent from her home and begged to be allowed to stay there. No matter what. My father abided by her wishes and kept her at home, even as her condition grew worse. It was far from easy for both of them, to say the least.

My mom did not want to live with Alzheimer’s disease and from the moment of her diagnosis, she was terrified of what was to come. When she died, she was isolated, scared, unable to recognize loved ones and a mere 65 pounds as she choked on her liquified food and barely ate. She could no longer walk, use her arms the way they were intended to be used, nor could she take care of herself in the bathroom or even wipe her nose. She died while wearing a diaper. She had lost all of her dignity.

To be honest, I don’t know if she would have chosen MAID when she received her diagnosis because she didn’t really know what was going to happen to her. How unbearable her life would become. The truth is that MAID wasn’t an option and so we never discussed it. What I DO know is this…should I ever receive the same diagnosis as my mother, I would not accept it. And I would not let it do to me what it did to her. With the possibility that MAID might soon be made available to Canadians who are suffering with a long painful future looming ahead of them, I now think about what it could have done for my mother and potentially for me.

MAID would have allowed my sweet mother to be with her family when her life ended. She could have passed away in a tranquil state, prior to living through years of humiliation, pain, fear, heartache and suffocation. If she had had the ability to give advanced consent to allow MAID to be carried out when she was no longer able to experience joy and when every day was filled with intense suffering, what a gift that would have been, knowing that her suffering had a limit. I think that the early days after her diagnosis would have been more enjoyable and less fear filled had she been able to create advance directives and list the indicators that would mean it was time for her to die.

My mother rescued many animals in her lifetime and when their lives became filled with suffering due to old age, cancer or other disease, she ensured that their lives were taken gently, as she cradled them lovingly in her arms. It was the hardest thing she ever did, seeing the life leave her beloved pets, but she knew it was the right thing to do, the greatest gift she could ever give them. They left this world knowing that their lives were always safe with her and that they could trust her to end their suffering. My mother did not receive this gift and it haunts my family to this day. She deserved more. WE deserve more.

Dementia is NOT the cute condition that is portrayed in movies. It is not a sweet grandmother who makes inappropriate comments and makes her family laugh. There is little laughter in it. It is not fun, and I assure you, it is not funny. I can tell you with absolute certainty that should I ever get an Alzheimer’s diagnosis one day, I will not let it destroy me the way it destroyed my mother. I would not want my husband and children, and any grandchildren, to remember me as the empty shell I would inevitably become, a mere echo of who I once was. I will end my life on my own terms, whether with a doctor assisting me or not. Obviously, I would prefer to be with a doctor and the most effective means possible, loving family near me, but if that isn’t possible, then I will find a way.

Please note that I am a healthy, fit, 51-year-old teacher, happily married with five beautiful children. I am not suicidal. But after watching what my mother went through over the years, I know with certainty that I will not suffer the same ending.

Towards the very end of her illness, my mom looked at me with distrust and fear, no longer recognizing me as her daughter and best friend. I am not ashamed to admit that in those terrible unimaginable moments, I wished, even prayed, for my mom to pass.

She needed to go. I thought that when she finally did graduate from this life that I would feel relief. And I do, but it’s been hiding like a coward behind guilt and grief.

As I reflect on my mom’s life and her suffering, I pray that our government creates more options for Canadian’s whose lives may become too difficult to bear. MAID may not be for everyone, but for those of us who would welcome it, it should be an option.

Life is about choices. Death should be about choices, too.