âPatientâ isnât a word they use at the Topaz day centre. The visitors here are simply called guests. âWe are all in the same boat and understand each other. Itâs one big, warm and caring family.â
Text: Bart Desomer Photos: Greetje Van Buggenhout
The day centre in Wemmel is not far from the Brussels ring road. Yet this is a quiet and residential place, with a leafy garden thatâs ideal for summer aperitifs or bringing out the barbecue. Inside, too, there is very little to make you think of illness. In the dining room, a few dozen people have just started lunch. Resistance is futile: we join them for fresh soup and tartiflette, a hearty mountain speciality made with potatoes, cheese and bacon. We have just enough room left for a piece of birthday cake brought in by a volunteer.
"We employ an artist who draws, paints or models with the guests. Artists are concerned with meaning, and so are people at the end of their lives."
VUB professor Wim Distelmans also has a birthday to celebrate: the non-profit LEIF (LevensEinde InformatieForum), one of the many end-of-life projects he helped set up, is celebrating its 20th anniversary. He first looks a little dubiously at the cakes (âI never normally have dessertâ), but then politely digs in. âThe volunteers cook a fresh meal every day,â he says. âGuests who want to and have the energy lend a hand. We make it as homely as possible here. White doctorâs coats are out and everyone is equal: staff, doctors, volunteers and guests. Itâs cosy and convivial, but I have to watch the line a bit.â
Why the idea for a palliative day centre?
âWe prefer to call it a supportive day centre, because the word palliative puts some people off. Topaz was a logical follow-up to the palliative Omega team, which we started in 1988 at the VUB Faculty of Medicine. They provide palliative home care. This is how we respond to the wishes of many people: not to have to go to hospital and to stay in their home for as long as possible, preferably until the end. Omega was the first fully fledged palliative team in Belgium â today there are 15 in Flanders and nine in French-speaking Belgium. Being at home is nice, but sometimes itâs too much. In the long run, the walls close in around you. Carers also need a bit of me-time and a breather now and then. The day centre, which was the first in Belgium, responds to this need. Last year we celebrated our 25th anniversary.â
Who is welcome here?
âPeople who are seriously and incurably ill: cancer, MS, ALS, Parkinsonâs. The average life expectancy is six months, but much shorter or longer is also common. We have subsidies for seven places, but we get an average of 14 to 20 guests a day. Some come every day, Monday to Friday, others once a month.â
What do people do here?
âTalking, cooking, playing games... Nothing is compulsory, everything is possible. We employ an artist who draws, paints or models with the guests. Artists are concerned with meaning, and so are people at the end of their lives. That works wonderfully. So the atmosphere is homely, but we can also provide palliative care here that those people would otherwise have to go to hospital for. So the day centre is an intermediate solution between home and hospital. That also saves money. If you reduce each guestâs hospital stay by two weeks, the cost of the day centre is covered. I sometimes explain this to politicians. Then theyâre interested, but they seem to forget it every time...â (laughs)
Who finances the centre?
âI managed to convince the then AZ VUB (now UZ Brussel) in 1997 to buy this vacant property. The price was good, especially since the building now houses a whole range of organisations involved in end of life, such as the non-profit organisation LEIF [see below]. Our team â a handful of staff â is paid by the UZ Brussel and we have a two permanent LEIF GPs.â
Do the volunteers play an important role?
âWe have about 60 of them. They are crucial to our operations: they help with transport, cook and serve coffee, make time for a chat with guests... We do screen them for their basic sense of humour. Professional seriousness shouldnât be confused with being miserable. The atmosphere here is light-hearted and pleasant and we want to keep it that way. We have no use for professional mourners with a âmissionâ.â
The Guest
Topaz was a success from day one. Tjerdy Kestemont has been a regular guest for almost two years. He visits on Mondays and Wednesdays and sometimes on Fridays. At 26, he is the junior of the group. âMy mum brings me,â he says. âShe knows Iâm in good hands here and that I like coming. And this way she can do something for herself for a change.â
Tjerdy was studying car mechanics when he fell ill. Heâs a fan of Suzuki, Honda and other Japanese makes, but cancer put a stop to his plans. He shows us the VW van and Lego cars in the cabinet in the living room where he now indulges his love of vehicles. The ceramic dog he has modelled is a dachshund, just like his dog Winnie at home. âIâm a lot younger than most of the other people here, but that doesnât bother me,â he says. âWeâre all in the same boat. So we understand each other. You donât always have to explain everything all over again. Itâs like one big, warm family. We look after each other. They encourage me and support me. That feels good. Here I forget that I am ill.â
Tjerdy Kestemont: âMy mum brings me. She knows Iâm in good hands here and that I like coming. And this way she can do something for herself for a change.â
Claire Vandenbulcke: "Here I learned to be open and listen to many different kinds of people, without judging or condemning."
The Volunteer
Claire Vandenbulcke was one of the first volunteers 26 years ago. She still comes every Friday. âIâm glad they still want me at 82, because I would miss it if I didnât come. The other volunteers have become real friends, we work well together. Through volunteering here, I learned to be open and listen to many different kinds of people, without judging or condemning. Thatâs hugely enriching. I also put things into perspective more than I used to. Sometimes I look around me and think: what is everyone worrying about?â
Emotionally, Claire admits, it can sometimes be affecting. âWith some guests, you really click and the bond goes deeper. It hurts when someone like that passes away. Fortunately, we are well supported by the nurses and the psychologist.â
Through her experiences at the day centre, Claire has already made some arrangements around the end of life. âMy LEIF card is in order and my children are informed. Not that Iâm constantly thinking about it. But you do learn to talk about it openly and freely. For many friends thatâs still somewhat taboo, but for us itâs very common.â
Wim Distelmans, gentle fighter for a dignified end of life
Wim Distelmans studied medicine at the VUB. He began his career as an oncologist at a time when many cancer patients could not be helped. Palliative care was out of the question. With moral, financial and practical support from the VUB and UZ Brussel, which upholds humanistic values such as self-determination, he and his colleagues carried out pioneering work around the end of life. Thus, the VUB was involved in establishing Omega, the first palliative team for home care in Belgium in 1988, and the first palliative day centre Topaz in 1997. The non-profit organisation LEIF (LevensEinde InformatieForum) was founded in 2003 to provide objective information on the topic of end of life. In addition, an extensive network of LEIF doctors and counsellors was trained. Today, Distelmans, as holder of the chair on Dignified End of Life, teaches students in the second master year with Mark De Ridder.
Wim Distelmans