Heleen Dupuis fights for control of your own life

Look, this is where my husband died.” She has explained at length how happy she is that she managed to get her husband with dementia out of the nursing home. She points to the spot: near the window, in the living room, overlooking the garden. Tears well up in her eyes: “Sad anyway.” Heleen Dupuis rarely cries. Not that she’s ashamed of her tears, but she’s a woman who likes to be above her emotions. “I do cry at funerals, almost always, even if I didn’t even know the deceased that well. And with the national anthem. And really only out of anger and frustration. That happens to me when people are unreasonable, or dishonest. That really pisses me off.”

Fortunately, she adds, she never cried in public. While in her long career, first as a professor of medical ethics, later as a VVD senator, there must have been moments when others made her furious. During the debates about euthanasia, for example, which brought her national fame, or about the right of patients to say ‘no’. “There’s only one way to do something with emotion,” she says, “and that’s with reason. He must try to win.” Fighting the emotion, using the mind as a weapon. This struggle characterizes Heleen Dupuis, as a professional and in her new status as a widow.

It has made her the woman she is, a woman who doesn’t let herself be boxed in. Not because of adversity, and not even because of the death of her great love. That’s how she decided — and in her case, that’s a wise decision in the literal sense of the word.
Her husband was cut from the same cloth. “He believed in the power of reason. But when dementia hit him, he lost it. That made him unhappy, really unhappy. Because he knew, at times. Those moments were so bad – almost unbearable for a human being.”
She herself always thought that dementia was a kind of forgetfulness. But it’s different, she says now. “The key word is: insecurity. Dementia is fundamental, permanent panic. You no longer know who you are, where you are, you no longer recognize anyone. Anyone who realizes this can better deal with the behavior of someone with dementia. Of course, it sometimes drives you completely crazy, if someone no longer understands anything at all, does the same things forty times and always asks the same questions.”

He passed away less than a year ago, Pieter Schmidt, former professor of ear, nose and throat surgery. She knew she couldn’t keep him with her forever when they married: he was 62 at the time, she was 44.
Keeping control is what he was no longer able to do when he had become completely helpless due to dementia.
That’s why she did that for him. Three weeks after he was urgently admitted to the nursing home, she decided to bring him home and arranged nursing care. “He was so unhappy there. Wept when I came, cried when I left. In the evening at seven o’clock I went for a visit, with a bottle of whiskey. Then he has something tasty, I thought. But then we had nowhere to sit. Not in the living room with thirty mostly very sick people, who screamed all the time. He did have a room alone, which was really nice of the staff, but there was one bed and one plastic chair. There we were with two travel cups. They said, ‘Give him a month and he’ll get used to it and he’ll calm down.’”
But according to her, the staff did not see how unhappy he really was there. “He kept himself big, he didn’t let himself be known. The stress caused his blood pressure to skyrocket to over 200. When he returned home, his blood pressure returned to normal. You see, I thought.”
If she hadn’t brought him home, she would be in very bad shape now, she says. “But because I committed that coup, I think: it’s okay. He lived another seven months.”

Heleen Dupuis is ‘actually doing quite well’. “But I am no longer anyone’s sweetheart, as the late Dries van Dantzig (psychiatrist, ed.) said so beautifully when his second wife had died. And I feel that very much. Yet I am still the old Heleen Dupuis, with my own way of life.” A little surprised: “You can even control your grieving process. You can think over and over again how awful it is and how alone you are. But you can also think: what else do I have for fun? I’m going to do this fun and do that fun and I have such nice, dear friends and family. It is possible, it is an experience. I feel I am learning a lot from it.” In conclusion: “Everyone should have and keep control of their life.” And as if she wants to immediately apply her own statement: “I must now, of myself, constantly realize what a godsend it is that my husband has passed away. For himself then. I can’t imagine that this should have gone on any longer.” And then, after a pause: “Those are all sensible arguments, of course. I’ve got my own trick, yes. But it does work.”
What also works, according to her, is work. She continued to do so when her husband was at her home and after his death.
“We have to. Don’t give up, let’s get started again.” But what if the sadness is so overwhelming that you can no longer think clearly? “Then you have to distract yourself,” she says firmly. “Working is good then. Or go for a walk, work in the garden, play the piano, it doesn’t matter. But go do something that makes you very focused. That pushes the emotion to the background a bit.”
Of course Heleen Dupuis also has difficult moments and then, like everyone else, she is vulnerable. “We came into the world as totally vulnerable beings. The question is: what do you do with that vulnerability?” She thoughtfully formulates the answer herself: “It is precisely your own vulnerability that prompts you to make life bearable. It makes you combative. Resilience is the means to limit vulnerability. The best way, of course, is to find a partner who is a very good fit for you. But even a great love does not completely remove the vulnerability, because you can also lose it. But even then you can derive lasting strength from it. After all, I can now think: how wonderful that I was able to find such a great partner. He thought I was the best.”

She is busy four days a week. “There is a day for work in the Senate. Well, forget that. That takes about three days, with everything around it. And then I give lectures one day a week. About ethics, and nowadays often also about dementia.”
Central to her work is her struggle to give people a better, more bearable life. “If you want to dedicate yourself to the public good, which has been my passion all my life, you ultimately do it for people. You wish the best for people who have been thrown down somewhere in this world without being able to choose. And if you can do something about that, if everyone wants to do something about it, then it has to get a little better, right?”

For Heleen Dupuis, a better life is a life in which you are in control. About your life. And also about your death. “In that respect, much more is going wrong in the Netherlands than I would have dared to think when I witnessed the first debates about the end of life in 1970. Then I thought: in twenty years they will have mastered that. But I hear so much about deaths where things don’t go well at all. Too much pain, too many interventions, doing all kinds of things against the wishes of the dying patient. My god, what are we up to, I think, when I hear a story like that again.”
In fact, she thinks the debate should start again. About the living will, the requested end of life, the pill of Drion. “Since 1977, I have continuously made myself strong, as strong as I could, for more direction for people at the end of their lives. First of all, for the right to refuse treatment. That went well, there is a law for that. But also for the right to euthanasia. But there is no one to initiate the debate.”
Why is no one taking the baton from her? “People are lazy, people are stupid… Yes, I don’t know, apparently the need is not high enough. That’s the only conclusion, isn’t it?”

What do you think? Should the debate about self-management around the end of life be reopened? Join the conversation at http://www.plusonline.nl/debatlevenseinde.nl