Love is patient: preventing euthanasia for those with dementia

When I was in high school, my grandfather went to visit my grandmother in the dementia ward every day for hours. She could not remember his visits, but I do.

Sometimes I accompanied him, and I am sure there were times when I thought I had better things to do. There were probably times I felt uncomfortable passing by the others who lined the corridors with a lost look in their eyes as they cried out, “Help me! Help me!”

What was the effect on me as a young person of seeing my grandfather, whose sharpness of intellect lasted until his last breath at 96, patiently accompany my grandmother amid the steady cognitive decline she experienced in her later years?

Its effect was undeniably moving and filled me with a persisting admiration. And even if I would never have admitted such an intimate reflection as a teenager, I know that it was in those tender moments that I thought, “I hope I am loved like this.”

This is one reason, among many, why I am deeply distressed that the Alzheimer Society of Canada has announced its support for expanding assisted suicide to persons with dementia.

According to the society, “people living with dementia are individuals – first and foremost” and deserve “autonomy over decisions.”

Most of us know someone who has experienced dementia, but can we grasp anything of the experience from inside it?

Last year, Anthony Hopkins became the oldest winner of an Academy Award for Best Actor at age 83 for his performance in The Father. In the film, Hopkins masterfully plays a character with dementia so as to simulate the inner experience of it for the audience.

As director Florian Zeller told The New York Times, “What I tried to do in The Father is to put the audience in a unique position, as if they were, in a way, in the main character’s head. And as a viewer, we have to question everything we are seeing.” Zeller wanted the film to be “not only a story, but an experience, the experience of what it could mean to lose everything, including your own bearings as a viewer.”

Any pretenses of autonomy and sheer individualism are fittingly shattered.

Interviewing Hopkins, CBC’s Tom Power admitted, “[The film] made me question empathy – not whether I should have empathy – but the empathy perhaps I didn’t have. Because I think when you’re able to use this film to see reality through someone with senility or dementia or Alzheimer’s, you begin to really have a deeper empathy for them, perhaps one that was missing before.”

What makes the film so compelling is how hauntingly true to life it is. The viewer is plunged into the difficult and tragic dimensions of the illness. Yet, without the slightest romanticization, the film is somehow poignant and beautiful.

This is because the film reveals that we cannot truly know or even be ourselves without one another. Despite the sadness and confusion of memory loss, relationships – when they endure – remain the basis for coherence, whether each person knows it or not.

Pope Francis said something similar upon reflecting on a visit to dementia patients. He said, "Perhaps some of them have lost their memory, but they are the symbol of the memory of a people; they are the roots of our homeland, of our humanity. They are the roots, and the young must go there to take the sap from the roots, to carry civilization onwards.”

Since someone with late-stage dementia certainly cannot consent to assisted suicide, the Alzheimer Society of Canada is now promoting the possibility of making advance requests, saying that this “would circumvent this problem.”

Advance directives, far from being an ideal, and even less a human right, betray the insecurity and anxiety many people feel as they age.

Making autonomy into a supreme value is actually a compromise made when, unsure whether anyone will want what’s best for me, I try not to make demands on anyone and look out for myself or disappear from their field of responsibility entirely.

In a brilliant essay titled “I Want To Burden My Loved Ones,” Gilbert Meilaender discusses his willingness to delegate end-of-life decisions to his wife, even if she were to make decisions somewhat differently than him. “As long as she avoids the futile question, ‘What would he have wanted?’ and contents herself with the (difficult enough) question, ‘What is best for him now?’ I will have no quarrel with her,” he says.

Of course helping others, especially when they cannot remember our help, is more demanding than non-involvement; that is why it is also so much more human.

We suppose it is the ones with dementia who cannot remember things, when it is actually we who are forgetting them. A dependent person makes an appeal to us for help, and it can never be in a person’s interest to be killed.

Assisted suicide for dementia becomes a temptation when we cannot imagine anyone having patience with us in that degree of dependency. But if we cannot imagine life worth living in the face of such vulnerability, what impact does this attitude have on those who, because of a disability or illness, are profoundly dependent on others early in life or throughout their whole lives?

We must be under no illusion about how demanding it is to care for persons with dementia given the immense patience, attentiveness, and compassion it requires. It will always be more costly to accompany than to abandon, to love than to leave. Yet, we cannot help but be moved when we witness icons of tenderness and patience or receive the grace to practise these virtues ourselves. If we are honest with ourselves, I think most of us are saying interiorly, “I hope I am loved like this.”

Amanda Achtman is currently pursuing a degree in Judaic Studies and Jewish-Christian Relations at the Pontifical Gregorian University in Rome. She works with Canadian Physicians for Life on ethics education and cultural engagement.

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