Testimonial | Living and loving with Alzheimer’s

In 2021, we talked a lot about Alzheimer’s disease in Quebec. Unfortunately, most of the time it was approached from the angle of an inexorable “decline” at the end of life. How not to fear this situation as it is presented to us? It is not surprising that, in this context, the Quebec government plans to introduce a bill opening the door to advance directives to offer medical assistance in dying to people with neurocognitive disorders who have become incapacitated.

Far from rejoicing, this idea worries me. The message it sends? It would be better to consider dying than to live with advanced stages of Alzheimer’s.

Before thinking of presenting such a bill, I invite the Minister of Health, Christian Dubé, to read my mother’s story.

In 2018, after a series of examinations and meetings with doctors and other specialists, my mother was diagnosed with Alzheimer’s disease. On August 9 of the same year, I left my house, 200 km from my mother’s house. I left my job, my home and came to live with her. Since that day, I have never left her.

I wanted her to be well, without stress, happy, that she could live as she had always lived.

My father Cyril passed away on October 14, 2015, after a nine month battle with stomach cancer. My mother Carmen and I took care of him until the end of his life.

For me, there was no other option.

It is not easy. Yes, I cried and it still happens to me often… Seeing someone you love unlearn how to live is almost unbelievable. Three and a half years later, my mother can no longer do anything without my help: walk, eat, bathe, go to bed. I have to be there for everything.

And yet… My mother loves life, she loves to laugh, loves babies, animals. Almost every night, she says she had a great day.

My mother does not want to die

Last November, we went to the emergency room. She had hit her head. When she saw the hospital in our town, she didn’t want to go in, she said, “I don’t want to die…”

She remembered that her husband, my father, had died there.

If she had been offered to request medical assistance in dying by advance directive when she was still fit, I would not have known what to do. I think she too would have been troubled.

I dare to think that his answer would have been negative. But if she had witnessed the hype of the past few months, which makes us fear the worst, I don’t know. If the law had allowed it three and a half years ago, and my mother had decided to sign advance directives designating me as a trusted third party, today I could trigger the process that would cause her death. The death of my mother… She who is happy, who loves many people and who is loved in return. It’s true that she isn’t aware of everything, but she fundamentally loves life.

I have lived with her twenty-four hours a day, seven days a week, for three and a half years. I love her and she loves me.

Let’s not put families in dramatic situations by making them fear an unknown future. Love can do a lot with gentleness and benevolence.

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