The Current - Quebec woman wins her fight for a good death

Episode Date: November 4, 2024

Sandra Demontigny was in her 30s when she was diagnosed with early onset Alzheimer's, a disease she watched eat away at her father and grandmother. Demontigny wants to one day access medical assistance in dying and has been fighting for people in her position to consent to the procedure in advance, while they still can. Now, the Quebec government has agreed to the change — we hear what that means to Demontigny and her fight for a good death.

In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with Season 3 of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy.

On Drugs is available now wherever you get your podcasts. This is a CBC Podcast. Hello, I'm Matt Galloway, and this is The Current Podcast. Quebec has brought in a new law regarding medical assistance in dying or MAID. As of last week, it is the first and only province to allow advanced requests for MAID. This law applies to someone with a serious and incurable disease that leads to incapacity, a disease like Alzheimer's, for example. Now those individuals can request MAID while they are still capable of consent with the intention of receiving aid to die in the future.

Sandra DeMontigny has been fighting for this change for years. She was in her 30s when she was diagnosed with early onset Alzheimer's. I spoke with Sandra last year about why advanced consent from MAID was so important to her. We'll get an update from her in a few moments. But first, here is my conversation with Sandra DeMontigny from March of 2023. You have been living with Alzheimer's for the last five years. How are you doing today? How is your health right now, if you don't mind me asking? It's sure it's always getting worse. That's the bad thing with Alzheimer's. But I still have a good sense of humor, good sense of humor and I'm still happy. It's true that I have more moments where I'm sad or I can cry, but it's part of this. And I'm really well surrounded.

When you say that it's getting worse, do you mind describing what that's like? What is getting worse for you? When we think about Alzheimer's, we always think about memory loss memory is working in many ways in our body it's not just memory of the effects or in in which year we are things like that. Like I'm forgetting about when I'm doing a meal, for example, I'm doing something, but the second step, I forgot what it is. So I go back to the recipe, then I go back to where I'm cooking. Oh, I forgot again. So I get back and get back. And oh I forgot again so I get back and get back and for me now doing the the supper can took me like two hours when before it was like 20 to 30 minutes and this is really hard for it's hard for the the way that I can feel about myself. And this is examples that I'm getting more sick every day than every year.

I think it's the worst part for me. I think a lot of us think of Alzheimer's as a disease that impacts the elderly. Can you just explain, I guess, a little bit of how early onset Alzheimer's is different in many ways for you? It's different because, but I only knew when we were young because my dad had it and my grandma. And the thing is that we are in normally the best time of our lives, with our families and with work. So my kids are still young, but not that young.

That's a good thing. They are 16, 20, and 24. So being a mom, it's hard to see, and it's hard to see and it's hard to um to be so supportive with them but it's important i'm supportive with them but it's um asking a lot from me from the inside i try not to show that much but um living with my illness and my difficulties and seeing the difficulties that they have to live because of that. You saw this play out, you mentioned, with your father. He was diagnosed when he was 40 years old? Yes.

He got his diagnosis at 47. Okay. But we knew that he had the disease long way before that. But he didn't want to see it or to acknowledge it. And at that time, it was not really known well, the young Alzheimer's disease. As his diagnosis and as his symptoms unfolded, as his daughter, what was that like for you? Hard. Sorry I'm a bit emotional about it. Yeah, that's okay. It was hard. As I said, it was not really well known then. So we didn't have really good support

of the health system around us, which is very different for me now. Hopefully, for me, it's really good. for me now. For me it's really good. And my father, he was like either doing like if there was nothing happening wrong or he was saying, joking, oh, that's what I want to say, that's what I wanted to do, you know, just joking. And after that it went to a different stage where he was sometimes thinking I was my mom, I was his mom,

or that he didn't have a daughter. was his mom or that he didn't have a daughter. How did that experience inform what you're doing now in terms of being an advocate for advanced consent for medical assistance in dying? It's everything. It's everything. It's everything. It's because I went through this. It's everything.

It's because I went through this. My family went through this. And a lot of times I told myself and to my mom and my brother that I would never, never, never want to live something like that. Because for the dignity, is how you say that? Because my father, he was not talking about his dignity because it was just too far. But I knew that if he could see himself, he would be really shy and sad about that, and he would not want to live like this. And now that I was able to see how it would be if I would get as far as him, and I really, really don't want to leave that,

and I don't want it for my children either. It's really difficult to speak about, but you've been very up front and very vocal in pushing the government on this, in speaking for people who want the right to choose when they die why is that so important for you to speak out in the way that you have publicly i really think that just talking about um the subject without seeing what it is to live with that i'm not sure you can really understand and there's a lot of people who say

that I disagree with that yes but if you just listen to what I have to say and what there are other people that live with that or will be living

with that you can feel that it's terrifying There are other people that live with that or will be living with that. You can feel that it's terrifying, you know? And if people knew what you knew, that they would understand that? I think they would have a lot to be able to understand. But, you know, there are some things that came from our values and there's some people that will never be reached by a story like mine and I think that's fine too and I don't want everybody to be the same opinion as mine I just want to be able to have the choice to quit life when I think it will be the good time. And the other thing is that at first I was not sure that it was a good thing to talk in public

about this, but I needed to make sense with what's happening to me. Because first, there's no sense when you just think about it. There's no sense to make with that. But to talk about illness, to talk about dignity, to think about made. Is that how you say that? Made? Yes? Okay. That makes sense for me. And it's easier to walk in my illness with sense. It gives a sense of purpose for my life. So you have made an official request, but this is a request that has to be made again every three months.

Is that correct? Yeah, that's it. And so, in some ways, you're waiting for the government to pass this amendment to the law. Yes, you're right. Because for now, I have to, as you said, to do it every three months. To renew that request. Yes, and I have to be able to consent

when I will receive it. It's like the request that someone that has cancer, for example, someone who can consent, you know. And what I would like to is to do anticipated consent? In case you are unable to give that consent because the disease progresses. Yeah. Do you worry about that? That you would have this request, but that perhaps you wouldn't be able to meet that threshold of consenting because the illness has progressed? Yes, I know it's possible. It's for sure my condition is getting worse like every week. So I wish that it will be possible.

Can I ask you what you would do if the bill isn't passed in time for you to be able to make that consent and have that request approved? The anticipated, you mean? Yeah. to to make that consent and have that request approved the anticipated human yeah I will have to go when it's time to go because if it's if I'm still waiting and that I cannot consent it I don't want to stay stuck in my body and just waiting for years and just waiting to die. Because my dad, it went quite fast, not that fast, but his mom, my grandmother, she was for seven years in foster care, just not moving from her bed and just looking at the ceiling all the time. And she wasn't able to talk,

just doing sounds like mourning or things like that. And I don't want to take the risk. So if I have to leave sooner, I will have to do it. That's it. That's a really difficult thing to think about as well. Yes, it's hard and it's frustrating because for me it's hard to understand how For me, it's hard to understand how a government, like someone from outside my life, can take such a decision that I am eligible or I'm not. And I can lose a few years of life because I will have to quit sooner just to avoid the illness to go too far. And when you say, if you don't mind me asking, when you say that, that you would have to quit sooner, that you would have to leave earlier, I mean, have you thought about that?

Have you thought about what that would mean? The thing is, if we don't have the anticipated will, we talk about it, yes, that's it, okay. I will have to be able to consent. If I lose that, I'm just, I don't have anything I can do more than just wait until I die in I don't know many years. So I will have to do the sacrifice to lose few years. But for me, the risk to be like a body who's waiting like a body who's waiting to die. It's just something that, for me, it's impossible. I don't want to live that.

I don't want my family, my friends to see that either because it's really hard. When it got harder with my grandmother, nobody was going to see her more, even her children, because it was, they said it was too hard for them. I'm thinking, and I'm not judging them, I can understand, but there's a lot of people that think that people with Alzheimer's disease, they don't see what is going on, they are not, their minds are not there, but I don't believe that. I just don't, as I told you, I don't want to make the chance to just be the one looking at the ceiling all the time and crying and be aggressive and being strapped, you know, attached.

You can be attached. My father, he was attached like this. Strapped down, essentially. Yeah. Restrained. The arms. Yeah, that's it. Restrained.

The arms, the legs, and the chest. I don't see what's worth living in a life like that. Let me ask you one last question, which is, again, a hard question to ask, but I bet you've thought about it. What would the end of your life in the best case scenario look like for you? Have you thought about what a good death would be? good death would be? I thought a lot about this. My house is near a river, so I wanted to be just outside near the river in a dim summer with bright sun and with my children, my close family, my best friends, my cats, and just being there with the sun outside. And I think that would be the best. I don't want to...

My choice is not to die in a hospital. And... No, I want it to be more... more... more personal, more intimate. Sandra De Montigny. I spoke with her in March of last year. And as we mentioned, as of last week, Sandra and other Quebecers will be allowed to submit an advanced request

for medical assistance in dying. In 2017, it felt like drugs were everywhere in the news. So I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. I'm Jeff Turner, and I'm back with season three of On Drugs. And this time, it's going to get personal. I don't know who Sober Jeff is. I don't even know if I like that guy. On Drugs is available now wherever you get your podcasts. On Drugs is available now wherever you get your podcasts. The CBC's Peter Tardy was in our Quebec City studio with Sandra last year during that conversation. He was there for support and he caught up with her again last week after Quebec had announced the change in law.

He joins us now. Peter, good morning to you. Good morning, Matt. It's wild listening back to that conversation and her frame of mind in terms of what she wanted and the clarity with which she was looking for that and asking for that. In the wake of that, how was she feeling about this change in the law? As I mentioned, you caught up with her last week. Yeah. And so I saw her the day the new rules came into effect. She was very happy.

I'll say relieved. Have a listen. I feel I am more peaceful. Now I'm thinking that I can just relax help the cause you know and and I forget what I was looking about when you say peaceful yeah why peaceful? What makes this peaceful for you? It's because the time is running out for me. And every day I lose a bit more of my dignity

and of the things that I can do alone. And this is hard to see for me and for my family too. She says the time is running out for her. What is this change in the law going to mean for Sandra? Well, first of all, it gives her more time. She says she doesn't have to worry that she'll lose the ability to consent practically. She'll need to submit a new request for MAID and she'll have to be explicit about when she wants

assistance to die since she may not be competent to make that decision at that time. And this is what she was thinking about. I have to write at what time

with which symptoms, what is my limit and when it's time to do it. And my criteria? Yeah, criteria. They are about living with dignity for me, what is dignity for me.

So I want to be able to live a life without needing somebody to take care of me most of the time. They can aid me with little things as they are doing now, but I want to be able to do my needs, like eating and going to the bathroom and sleeping by myself. I can have a little bit of help, but I don't want that someone is doing almost everything for me, because if I'm alone, that I would not be able to do anything of this, you know?

So as a Quebecer, Sandra can do this, but for now, this is complicated, because for now, it's still technically against the law. So how is that going to work? No, you're right. So the criminal code does not allow for advanced consent, but Quebec has said it will not prosecute doctors who provide MAID under those circumstances,

and the federal government has said it will not challenge Quebec's law. In fact, last week, federal health minister Mark Holland said the federal government will launch consultations on changing the law. And Sandra hopes that they do. In the meantime, we first met her here on The Current last March. It's about a year and a half ago. How is she doing now?

She's noticing that her condition is getting worse. She was having difficulty, more difficulty finding words in English, maybe more forgetful. She told me that she makes mistakes. Sometimes that makes her angry. She's sad to leave that home by the river, to move into a place now where she gets more care. That was the place that she wanted to be at when she died. Exactly. That place by the river.

Yeah. And so her disease has gotten to the point now where she needs to have nurses around. And she still has definite hopes, though, about how she wants to die. I want to be with my family, with my cat. Something really cozy, simple. And just that we remember nice souvenirs together. I know who I want to be there. So my three kids.

But if one or two or three of them don't feel good or free about it and they don't want to be there, I wouldn't respect that. That's now I'm starting to cry. My boyfriend will be there my best friends too I think my brother will be there too it's hard for him because

he doesn't have the illness and I'm the one who has it and I'm really happy for him and it would not be nice if the two together sick at the same time but for him it's not easy I don't know if I said my cat but I really want my cat to be there For him, it's not easy. I don't know if I said my cat, but I really want my cat to be there.

Yeah, you did. Yeah. She's a remarkable person and has a real sense of what she wants and must feel some satisfaction in this change in the law in Quebec. I've been thinking about her since we did that interview a year and a bit ago, and I'm glad to get this update. Peter, thank you very much. You're welcome. Peter Tardy is a journalist for CBC Radio in Quebec City.

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