Steven (56), son of Wivina Demeester who had early-onset dementia, died unexpectedly: “He left peacefully, but it is too early” (Zoersel)

Monnikenheide-Spectrum announced Steven’s passing on its Facebook page. That happens to every resident who dies, but Steven was very special. Because without him there would be no Monnikenheide. He was the originator of the establishment of the institution to support parents in caring for a family member with a disability. His birth on September 9, 1967 led Paul, Wivina and many friends to realize the center.

READ ALSO. After Down syndrome, son Wivina Demeester also has early-onset dementia: “You have to say goodbye several times”

“For six months we were only sad when it turned out that he had Down syndrome,” Paul, the ex-minister’s husband, said recently in an interview. “Then we decided to turn that emotion into a positive story.” Wivina agrees. “It took me a little longer than Paul to turn that switch. Until I also thought: we’ll make something good out of it.”

Pioneer

Monnikenheide was a pioneer in care for people with disabilities. Satellite houses sprang up elsewhere in the village. Steven lived in one of them, the House at the Church, for 33 years.

The first signs of early-onset dementia appeared around the age of 50. “People with Down syndrome are at greater risk because they have not two but three times the 21st chromosome, which carries the hereditary predisposition to Alzheimer’s. I have seen it happen to many people from Monnikenheide. We hoped that Steven would escape,” says Wivina Demeester. “At first you don’t want to see those signals yourself. But at some point the news came from the sheltered workshop in Merksem, where he worked for 27 years and always went independently by bus and tram, that Steven could no longer follow. Such a dementia process takes an average of eight years. It was shorter with Steven. But even in his demented phase, he sometimes remained the ray of sunshine. Our Steven was a real cuddly bear.”

“I always said that I wanted to survive Steven, so that I could continue to care for him. That wish has come true, but it is too soon”

Wivina Demeester

Due to his dementia, he was no longer able to live independently and in November last year he returned to the Lotus home on the main estate of Monnikenheide, with his parents nearby. “On weekends he came to us during the day. He still recognized Paul and me. The other family members no longer, although it sometimes happened that after a few hours he suddenly recognized his brother. ‘Pieter!’, it suddenly sounded, as if he had received a reminder.”

Moeke

Wivina Demeester visited the Lotus about three times a week. “Then I would pick up or deliver his laundry. The other residents eventually also said ‘tired’ to me, like our Steven. He had wonderful supervisors there. I am extremely grateful to everyone, including the supervisors of the sheltered workshop at the time.”

Last Thursday, Wivina Demeester visited Steven. “He was in good spirits. But on Sunday he had a severe epileptic attack in his sleep. He left very calmly, the neurologist assures me. He also looked very peaceful. He stayed here for the first few moments. I spent a lot of time with him. His face was still very beautiful.”

“I’m trying to control my sadness, but it’s hard because it comes so early. He still had many good periods, although he was more tired than before and slept more. I have always said that I wanted to survive Steven, so that I could continue to care for him. That wish came true, but it was too soon. It is a great comfort to me and Paul that Steven has been a happy guy. He has seen the world. We took him everywhere with us, went to the opera and the Singel together. I think we lived a beautiful life together with him. He has helped many. Steven said hello to everyone, he thought he knew everyone. He was very communicative, even though he was not always easy to understand.”

Trappist

It is still very difficult now, says Demeester. “But I think that soon the beautiful and grateful memories will prevail.”

“We cherish his image, enjoying a Trappist beer”

Katrien Schryvers

Steven had two brothers and a sister. “Our one son lives in Shanghai and is flying over. The farewell service will also be streamed, because we still have grandchildren in New York and San Diego. The farewell will take place in an intimate circle in the church of Zoersel.”

Many responses are pouring in. Many people know Steven from the bus. “We cherish his image, enjoying a Trappist beer. With Monnikenheide, Steven is one of the foundations of Zorgzaam Zoersel. Wishing you a lot of strength,” Katrien Schryvers (CD&V) also responds.

Wivina Demeester is Antwerp’s CD&V list pusher for the House in the upcoming elections. (kma)

READ ALSO. Wivina Demeester (80) back on the CD&V list after twenty years: “Why me? With my age I represent a large part of the population”