Jacqueline Bouts (60) runs the only hospice in the Netherlands specifically for palliatively ill young people. And for their loved ones. She started it because as a nurse she missed a warm place where these people could spend their last period in a way that suited their lives. Here, the loved ones of her guests receive the attention that she herself had to miss when her sister was dying.
The idea that a life can only be completed when we reach the age of 80 or older is a misunderstanding. Jacqueline has experienced it often enough: people who have such a great talent for life that it can be complete even in just 20 or 30 years.
About lives that had meaning
And she should know: over the past 40 years she has guided many, many young people in their final phase of life. “Many of those people have made a big impact with their zest for life and achieved all kinds of things. Their lives have had meaning.”
Take, for example, Liam (17), who died last Friday. She was there, in her hospice Xenia – in full Xenia House With A Heart. RTL Nieuws recently spoke to him about his book Oración, about mythology. “He was such a special person,” says Jacqueline. “Of course it is very sad that he is no longer here, but you cannot call his life incomplete.”
We are sitting in the front garden of the hospice, right in the center of Leiden, under an imposing beech tree full of purple-red leaves. The modern white building is located in a beautiful courtyard, behind the old hospital, where students now live.
A gust of wind grabs the parasol and knocks it over. She watches it with amusement and makes a joke to a boy in a wheelchair who is also sitting in the garden. “Just leave it alone,” she says.
Then a sixth child was born
Calm, soothing – those words describe her personality. You notice it immediately.
The fact that she exists is a small miracle, she laughs. She comes from a Catholic family in Roermond. “When my parents did not have a child after a year of marriage, the pastor came to ask what was going on. My mother went on a pilgrimage to Lourdes and then six children came in the space of eight years.”
After the fifth, the doctor thought it was enough. He was concerned about the health of Jacqueline’s mother. It would be better if it stayed at this. “But there was still a sixth and that was me.”
Sister Bernadette had to be admitted
It was a loving and wonderful family, she says. The only sad thing was that her sister Bernadette, seven years older than Jacqueline, had psychological problems. “She often read to me. Sometimes she made up stories herself. As an adult, she was such a very sweet woman, but actually too good and too vulnerable for this world.”
Bernadette, who was named after the Catholic saint Bernadette of Lourdes, was admitted to a psychiatric hospital. “When I left after a visit, they always locked the door behind me. A nasty sound. I can still hear it.”
Later – Bernadette was 30, Jacqueline 23 – her sister chose to leave her life behind. For a few months, Bernadette lay in a coma in a hospital. There was nursing for her sister, but the care ended there, says Jacqueline, by which she means that no attention was paid to her grief.
“I was alone with my grief. My family lived far away, the nurses had no regard for other people. I was not allowed to grieve in a beautiful way.”
AIDS was spreading in the capital
That shortcoming only became apparent much later. “During my grief and loss training, I discovered that I had never thought about my own grief. And how incredibly important it is that there is also attention for family and friends. I have always had that attention because I do it myself. So we pay a lot of attention to that at Xenia.”
Jacqueline had left for Amsterdam years earlier, at the age of 18. There she worked in healthcare, in a nursing home for dying people. It was the early 1980s, the AIDS epidemic was spreading in the capital. “I expected to take care of older people, but because of AIDS I was confronted with young people dying. No one knew exactly how to guide them. You just did it.”
Later she worked at the VU hospital in Amsterdam. “I chose the children’s department. There too I worked with young people, many of whom died.”
In her work she encountered a frustration that became increasingly difficult to ignore: as soon as palliatively ill young people turned 18, they were transferred to a department for adults.
Over 18: suddenly among the adults
“And suddenly nothing was allowed there anymore. No longer visiting your parents or brothers and sisters all day long, but visiting hours. You suddenly end up in a lonely world of dying elderly people, while you are still in a phase where you have some of want to make your life and discover things. I found that terribly difficult. I didn’t want to do that to those young people.
In 2008, she first toyed with the idea of setting up a hospice herself, intended for palliatively ill people between the ages of 16 and 40. The time had come in 2014, partly because the housing association was willing to have a building built. They recently celebrated the 10th anniversary of Xenia – an ancient Greek word whose literal translation is: care for the stranger who knocks here.
Look at the stars one more time
There are six large guest bedrooms with private bathrooms. Downstairs there is a kitchen/diner, where it was buzzing with activity during our visit. A resident is lying on the bed near the large table, chatting with friends and family.
On the upper floor there is a spacious living room where guests can receive their own friends. “Liam spent his last night here,” says Jacqueline, pointing to the glass roof. “He and a friend of his wanted to look at the stars.”
“Above all else, our guests should feel at home,” she continues. “Anything is allowed here, as long as you take into account the other people who are here. Family and friends can stay here, we can add beds to the rooms. There is also a guest room.”
That sometimes leads to special scenes, she says, laughing. Like the resident whose friends came to visit every Friday with crates of beer and bags of chips. “That group of friends continued normal life here. Very nice.”
To the pub with the morphine pump
Another resident sought distraction in the Belgian beer café a few doors away. “He often went there with his morphine pump with him. That café also had a gangway ready so that our guests could roll right in.”
Someone else got married in the hospice. “His wife sends a cake every year on the wedding day. That shows that we are doing something right here.”
She received this golden tip – to be in a city where there is a lot of buzz – in England. “In the Netherlands there was no hospice care specifically for this age group. In Oxford you did have that, the Helen & Douglas House. I went there to gain experience. There it was emphasized to me that the city center had to be close by.”
After all, she is there for young people, she says, and they don’t want to spend their last weeks or months living in a remote forest. “This environment suits their life and their phase of life. Some also see living here as standing on their own two feet. Living your own life, that also suits their age. They can go to the pub, or to the city or the market, or for a walk in the Singelpark.”
She points to a four-storey building that is separate from the main building: “Four young people with a progressive muscular disease live there, each in their own apartment. So they live there on their own and receive the care they need from our nurses. .”
How caregivers become partners again
By the way, not everyone gets to the end here; some people just come to stay for a while. For example, young people who have been cared for by their parents from an early age. “They then come here for a week so that the parents can go on holiday. That is often a bit scary at first, because they are so intertwined with each other their entire lives. But they usually say: we want this more often. For those young people it is It is also a moment when they can stand on their own two feet for a while.”
Sometimes people who are cared for by a partner also come to stay. “Because we take over the care here, couples can be partners again for a while, instead of caregiver and cared for.”
She is a little surprised to note that even after 10 years, Xenia has hardly been followed in the Netherlands. “We are working on expanding this to Tilburg, Nijmegen and Groningen.”
Jacqueline does not think she has chosen a life full of sadness. “No, I don’t see it that way. The two most intimate moments of a human life are birth and death. People allow me to attend one of those moments. That is of course sad, but at the same time it is very beautiful.”
Why she is honest with the children
There is a difference between her role as a professional, she believes, and the role of involved loved ones. “The process is different for family. But in my role I experience it as valuable that I can give these people a lot in this phase. That I can do a lot for them. It is much harder for family.”
Many of her guests have young children, she explains. She believes that this requires special attention and care. “It is also important for the children that they feel comfortable here. We emphatically involve them in the process and are very honest about what will happen. That is important, because otherwise they will start to imagine all kinds of things. And the fantasy is a thousand times worse than reality.”
From the way she moves through the building and how she interacts with her residents and colleagues, you can see that Jacqueline has created a place that is tailor-made for her. But, she says when asked, we should not regard Xenia as a tribute to her sister Bernadette. She plays a role, sure, but it’s broader than that. The hospice stems from its entire history. The AIDS patients in Amsterdam and the children she guided at the VU hospital also led her on this path.
Jacqueline grabs the pendant of her necklace for a moment. A cloud; flat top, two unequal sized half circles at the bottom. A B on its side. “It’s true that Bernadette is always here with me.”
Sunday interview
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