She Made a Plan. Then She Forgot It.

Quebec has begun allowing people to request an assisted death in advance. It is the only place in North America that does — and the window it opens is exactly the one a slow diagnosis closes.

The year we spent looking for a diagnosis

It took three neurologists and a full year. I have written about what that cost us medically. This is what it cost differently.

Lori was in her forties when the symptoms started. Getting anyone to say the word took over a year, and the answer finally came in March 2016.

What I have not written about is what she was doing during that year.

She was researching Death with Dignity.

She had watched both her grandmothers go through dementia — one on her father's side, one on her mother's. She had seen the stove left burning. She had heard the accusations about stolen things. She had watched two women she loved lose the ability to care for themselves, and she had drawn a conclusion about herself from it.

She was not going to do that.

She made two plans

She was methodical about it, she was serious about both, and she was — by every measure that matters — entirely herself when she made them.

I am not going to describe them, and I would ask you to understand why. Some of the people who read this site are in the state Lori was in that year. Detail helps nobody and it can harm someone.

So: two plans. Considered, deliberate, and made by a woman who could still weigh what she wanted and say so clearly.

Then the disease took them.

Not her resolve — her access to it. As she declined, she forgot that she had decided anything. She forgot the research. She forgot the conclusion she had reached about the life she was and was not willing to live.

The disease that makes people want an exit is the same disease that removes their ability to take one.

That is not a metaphor, and it is not only about Lori. It is the structural fact underneath every one of the laws below, and she demonstrated it privately in our house years before Quebec wrote it into a statute.

What Quebec actually did

On October 30, 2024, Quebec became the only place in North America where a person can ask, in advance, for an assisted death after they have lost the ability to ask.

The headline version — that assisted dying is now available for Alzheimer's in Canada — is close, and wrong in two ways that matter enormously.

First, it is Quebec, not Canada. Federally, the Criminal Code still does not permit advance requests anywhere in the country. Quebec moved on its own. Ottawa's response was not to change the law but to announce that it would not challenge Quebec's, and to direct federal prosecutors not to prosecute. Health Canada ran a national consultation, published its findings in October 2025, and has made no decision. A Senate bill reached second reading. Nothing has passed.

Second, and this is the part that matters to almost everyone reading this: the request must be made while the person still has capacity. After a diagnosis of a serious and incurable illness that will lead to incapacity. Before that incapacity arrives. It cannot be made speculatively, and a family cannot make one on behalf of someone who is already past that point.

So for the reader whose husband is at stage six and no longer knows what year it is — this changes nothing at all. The window closed before they knew there was a window.

What the Quebec process requires

Among other things, that you describe your own future decline in specific detail, while you are still yourself.

To make an advance request in Quebec, a person must have the diagnosis, be of full age and insured in Quebec, be capable of understanding their situation and communicating their wishes, and make the request freely.

They must also describe in detail the clinical manifestations — the actual symptoms — that should trigger the aid.

Sit with that requirement for a moment. You are asked to write down, in advance, the exact state of your own future decline at which you would want help to die. Not "when it gets bad." Specifically what bad will look like, on you.

The form comes only from a physician or specialized nurse practitioner. It is signed before that professional, two witnesses, and any designated trusted persons, and entered in an official register.

For it to be carried out later, all of the following must be true: the person is now incapable of consenting; the manifestations they described are present on a recurring basis; they are in advanced, irreversible decline; they are experiencing enduring and unbearable suffering; and a second professional confirms it.

And then the crux. The request is invalidated if the person shows refusal or resistance — by words, sounds, or gestures. Reflexive movements do not count. Somebody has to decide, in the room, which is which.

Is it working?

As of late 2025, Quebec had received 1,676 advance requests. 1,511 met the criteria.

Whether any have actually been carried out is not clearly reported, which tells you something about how new and how careful this is.

Public support is substantial — around 70% of more than 46,000 Canadians surveyed favor allowing advance requests. Doctors are considerably more divided. One Quebec physician described the central difficulty plainly: it is very hard to assess the suffering of someone who cannot communicate it. Another opposes the practice on the grounds that consent given years earlier cannot be informed by facts that did not yet exist.

Notably, the Alzheimer Society of Canada supports the right of people with dementia to make advance requests and has said it will not fight the change. That is not a small thing, and it preempts the assumption that dementia organizations are uniformly opposed.

And in the United States?

Medical aid in dying is legal in a number of states. Dementia disqualifies you in every one of them.

Not by oversight. Structurally. Every US aid-in-dying law requires three things:

• A terminal diagnosis, generally with a prognosis of six months or less, confirmed by two physicians.
• Mental capacity to make healthcare decisions — at the time of the request, and again at the time the medication is taken.
• The physical ability to self-administer the medication.

Dementia fails the second requirement by definition. And by the time it satisfies the first, the second is long gone. Maine Death with Dignity states it without qualification: there are no exceptions to these requirements.

That is the whole thing, stated as policy: the disease that makes people most want the option is the one the laws were written to exclude.

What exists instead

Three things, and each has a catch that families discover late.

• VSED — voluntarily stopping eating and drinking. It is legal, it is not classified as suicide under most state law, and it requires current capacity. Which again means early, and which means a person with dementia has to act while they still feel relatively well.
• Dementia directives, including instructions that hand-feeding and fluids be withheld at a specified stage. Only Nevada explicitly recognizes advance directives authorizing the cessation of eating and drinking. Many states classify assisted feeding as mandatory comfort care.
• Hospice and palliative care, including comfort feeding rather than a feeding tube. This is the path most families actually walk, and it deserves more attention than it gets. See our guide to hospice for dementia.

The case that shows what a document is worth

Susan Saran wrote down exactly what she wanted. The place she was paying to live said no.

Saran was diagnosed with frontotemporal dementia at 57. Before that she had been a regulator at the Chicago Board Options Exchange, investigating insider trading.

After two brain hemorrhages in 2018, she signed an advance directive for dementia prepared by End of Life Choices New York, instructing that hand-feeding and fluids be withheld at the end. She had paid over $500,000 to move into a continuing care retirement community.

The facility refused to honor it, saying through counsel that state and federal law require it to provide meals and feeding assistance.

In her own words: she did not want her life prolonged beyond the point where she was participating in it.

No court has ever definitively ruled that a dementia directive for VSED must be honored.

The lesson is brutal and it is practical: signing the document is not the same as it being followed, and the place you are paying to live may be the place that overrules you. If you write a directive, ask the facility — in writing, before you sign the residency agreement — whether they will follow it.

Where I have landed

Nowhere tidy, and I do not think anyone should trust a tidy answer to this.

Here is what happened to Lori after she forgot her plans.

A month in a geriatric psychiatric unit to get her medications regulated. Things that happened to her in memory care that I have written about separately. A broken hip at stage seven, and surgery I consented to over the phone because it was the pandemic and I could not be in the building. A stroke.

And at the end, she could no longer swallow.

Think about what that means alongside everything above. The only lawful route available to an American with dementia who wants to shorten the end is to stop eating and drinking. Lori arrived there anyway. Involuntarily. Over years instead of weeks, with none of the choice and every part of the outcome.

She spent a year planning to avoid an ending, forgot the plan, and reached a version of it that nobody chose and nobody could stop.

So I understand exactly why people want advance requests. I understand the Quebec law, and I do not think the people who wrote it are careless.

I also know what it would have been to be the person holding that paper. To be the one deciding whether the manifestations she wrote down years ago were the ones in front of me now. To watch a clinician judge whether a sound she made was refusal or reflex.

I am not going to pretend I have resolved that. What I can tell you is that both of those things are true at once, and anyone who tells you this question is simple has not stood in the room.

If your person is talking about this

Early on, this is usually a conversation about control, not a crisis. Treat it as one.

• Stay in the conversation. A person who raises it and is met calmly will raise it again. That is how anyone gets helped.
• Rule out the treatable. Depression in dementia is common, frequently missed, and genuinely treatable. So is pain. Both speak through exactly this kind of talk.
• Make it concrete while they can still direct it. Advance directives, a healthcare proxy, an honest conversation about what good care looks like to them. A palliative care team is very good at these conversations, and you do not have to be dying to be referred to one.
• Get the firearms out of the house. See above. It is the one thing here that reliably saves lives.
• If you are worried about immediate safety, call or text 988. You do not have to be certain first.