Faced with an early onset of Alzheimer's disease, she struggled to expand her assisted suicide in Quebec

One recent night, Sandra DeMontigny tried to write about the time she died.

“I'm sitting in a corner with a candle next to it, just to create my own bubble, to think and cry.”

She reflected on this moment for many years, eagerly hoping that it would fight tirelessly for it. But these words were refused. The form in front of her was still blank. To be precise, how does a person decide when to end his life?

Last fall, the French-speaking Quebec, Canada, became one of the world's people who have advanced choices for medically assisted deaths to allow people with severe illnesses – perhaps in the years before the bill, when the person was still mentally capable of doing so. a major decision.

Ms. Demontigny, a 45-year-old mother of three, was diagnosed with a rare form of early onset of Alzheimer's disease in her life – playing a key role in lobbying for the change.

Some people facing such a serious health challenge may withdraw. But even when Ms. Deux-Mon-Tee-Gnee began to lose her memory, she became the face of a movement to expand the right to death in Quebec.

In talk shows, in numerous interviews, she talked about how she inherited the Alzheimer's genes that her family carried. She recalls how her middle-aged father became unrecognizable and aggressive throughout her life. She wanted to die with dignity.

Still, four months after Quebec expanded its right to death, she has not completed the Advanced Request Form. Choosing death is painful enough, but Ms. Demontigny had to announce the deadly dose in exact details. Should it be done when she needs all-day care? When she no longer knows her children?

“Even if it's a subject that has kept me in full focus for years, things are different now because I have to make a formal request,” Ms. Demontigny said. “But I didn't change my mind – that's for sure.”

Under the new law, advanced assisted death requests must meet a set of criteria and be approved by two doctors or professional nurses.

Worldwide, only a few countries (including the Netherlands, Belgium, Luxembourg, Spain and Colombia) recognize early assisted death requests, but in some cases it is not suitable for suffering from Alzheimer's disease or other forms. people with dementia.

Ms. Demontigny spoke during two-hour interviews in her one-bedroom apartment, often interrupted by the cry of a very waving Siamese cat, Litchi. Her partner André Secours is visiting – helping her recall details, reminding her of regular calls in the afternoon or dates the next day.

Although only in the mid-40s, Ms. Demontigny moved into the apartment – inside a residence in Lévis, a suburb south of Quebec City, because she needed more help a year ago. She chose to live alone and did not want to bear it for her family. Her two older children are already adults, and her youngest lives with Ms. Demontigny's ex-husband.

Her front door was covered with reminder notes. The timer at the top of the stove range automatically cuts off power. Her closet’s clothes were arranged and archived in an orderly manner and used photos on her smartphone. However, there is no system.

“I'm doing something, Litchi walks by me, I follow Litchi, I forget what I'm doing,” she said.

The bright sofa cover – brought back from Bolivia, the Democratic Republic of the Congo and elsewhere where she worked as a midwife – hints at her life before her diagnosis at the age of 39 in Alzheimer's.

Ms. Demontigny decided to become a midwife after her first child was born. She said the obstetrician had performed the procedure without warning her.

“This is my body – can you at least tell me?” Ms. Demontigny said.

As a midwife, she hopes that women can give birth in a respectful and natural environment.

For Ms. Demontigny, there is a direct link between proper birth and proper death.

“Life and death are similar to each other,” she said.

Ms. Demontigny fell into depression when she learned she had Alzheimer's disease, but was not surprised. Several older relatives began experiencing Alzheimer's symptoms at a very young age, although they kept the disease as hidden as possible out of shame.

Her father began to lose his memory in the mid-40s and stopped working at the age of 47. At home, he spent his wandering, hitting the wall and breaking down from exhaustion. During his last years at the medical facility, he licked the floor, acted sinisterly, and even threatened to kill his son, Ms. Demontigny's brother.

Like many Québécois families, Ms. Demontigny's parents were separated from the Roman Catholic Church, whom she considered herself an atheist. However, when her father died after years of pain, she said she felt her soul leave.

“I haven't lived in peace for at least ten years,” she said.

While her parents’ generation was silent about Alzheimer’s, Ms. Demontigny set up a Facebook page in 2019 describing life with the disease. The social media posts came from three mothers, who were under 40, had to give up her career due to the rare form of Alzheimer's disease, resonated in Quebec. She became a spokeswoman for the Federation of Alzheimer's federations in Quebec and wrote a book about her experience of “the urgency of life.”

Ten years ago, in other parts of Canada, Quebec legally assisted in death. By law, a person must be in a “high-level state of declining ability” and “their consent must be clearly confirmed immediately before assisting death”. However, for those suffering from incurable and severe illness, such as Alzheimer's, they may lose their ability to agree.

Ms Demontigny said Dr. Georges L'Espérance, a neurosurgeon and president of the Quebec Association's Right to Die Association, helped urge the urgent need to make advance requests after allowing it to become a spokesperson for the group in 2022.

“She plays an original role,” said Dr. L'Espérance. “These concepts can be discussed abstractly. But when you can connect disease to people who can identify with it, it's different. Sandra ) is an open book and very credible.”

Ms. Demontigny’s partner, Mr. Secours, said fighting for the change helped fill the gaps created by her diagnosis.

“She never thought she had to work hard to do her career,” Sails said. “But that saved her, and it gave her meaning in life.”

In the six decades since her diagnosis, Ms. Demontigny has lived a busy life – speaking out loud, writing books, becoming a grandmother. She has a romantic relationship with Mr. Secours, 72, who lives across the street from her old place.

Ms. Demontigny said: “André talked to everyone and greeted everyone, and he was very cheerful.”

“In the beginning we were friends, neighbors, and then our relationship developed.” Mr Secours said.

However, some people asked him why he chose to participate with people with incurable diseases.

“Even if I just turned 100 and saw a good mother, he told me, 'Andre, you really didn't make your life easier.'”

“She stops saying that,” Ms. Demontigny interjected.

They said the couple was on vacation in Costa Rica last year and hoped to have a safari in South Africa because Leach is now sleeping in front of the TV.

Perhaps it was the life she was still able to lead and enjoy, making it difficult for Ms. Demontigny to put down “clinical manifestations” in writing as required by law, which would result in assisted death.

Since Ms. Demontigny may become powerless as her condition progresses, the performance she describes will “constitute a future expression of consent.”

In fact, she wrote in the book that she hopes to assist death when certain conditions are met, including not even being able to recognize one of her children and act actively towards her loved ones. But despite what she would say when she sat on the papers recently, she couldn't get herself to write them down and hadn't.

“I won't change my mind because in my case, it's the best ending,” she said. “But I don't want to die. I'm not ready. That's not what I want.”