This community was started by Nanneke van de Star, who sadly passed away last summer due to her alcohol addiction and autism.
In the treatment process of his 29 years old daughter her father – Rob van de Star – experienced a lot of sad and incomprehensible moments. Miscommunications between organizations, lack of understanding from social workers, tunnel vision and bizarre regulations. The relatives of addicts suffer as hard in their despair as the addict while standing on the side.
Rob, Nanneke’s dad
Our sweet daughter Nanneke died last summer early in the morning from a cardiac arrest. Root cause: hypothermia and strong drinking.
That night before, she and Dennis were evicted by his family from their home and they spent the night outside. Just a thin summer dress on, tipsy and missed the last train to Amersfoort. That night the temperature dropped to 12 degrees …
Dennis, one of the many boys she knew that I saw briefly during his and her detox recording in one of the previous months, was with her that night and didn’t pay much attention. His cell phone was empty and he didn’t call 911 in time when he realized that Nanneke was not doing well. Battery out ….
He did not have the presence of mind – he would not have used, well … – to use Nanneke’s mobile. CPR was not successfull. Interesting detail: it later turned out that Dennis also had Nanneke’s cardigan at home…
What preceded it?
Where shall I begin? As a teenager, Nanneke struggled with anorexia bulimia and was treated for that in Zeist. Not successful and then she discovered the drink. She went to rooms when she went to the Grafisch Lyceum in Utrecht. During that period, alcohol consumption increased, school was no longer successful and relationships broke down time and again.
From institution to institution: Fornhese, Boddaert and Zon & Schild in Amersfoort, Dimence in Zwolle, Leyenhove and Lievegoed in de Bilt, EMDR at Psytrec in Weert, Parnassia in The Hague, De Witte Hull in Zeist, Jellinek Minnesota 12 steps in Amstelveen, Kwintes in Amersfoort, Victas and later Jellinek detox in the ABC street and later in St. Antonius in Leidsche Rijn in Utrecht. This is just a sample of the large number of institutions where Nanneke has stayed in recent years.
And from room to room: this father has moved his daughter about nine times – refurbished and helping to start the next study again. Eventually ended up at Kwintes (protected living) in Amersfoort – Vathorst. IKEA was happy to see us …
She went to the Witte Hull in Zeist, part of Lievegoed, for six months. Our Nan described this as the happiest period in her life. Structure, regularity and anthroposophy helped in this. And she was unlucky that she had to leave after that half year – because the Witte Hull closed: austerity measure. And there she was again: left to fend for herself on the street …
On November 20, 2017, my wife and I received an urgent phone call while we were at a cremation: Nanneke was admitted to the Meander hospital in Amersfoort with a cardiac arrest. After a resuscitation of more than half an hour at Kwintes in Amersfoort (where she was living together with guidance and spent six months illegally) and a coma of 10 days, she recovered. After two months, she was able to leave the Meander hospital, fully recovered. A yellow card with a red border, you would say …
When she was fully recovered and was discharged from the hospital: in an ambulance (because that was the protocol …) and taken to the detox department in Utrecht, she came back among the addicts. No living space was arranged, there was no place at Kwintes. This was prior to her cardiac arrest “in the works” but suddenly could not continue. You call that “tying the cat on the bacon”, a horror scenario. Nanneke was accompanied by the FACT in Utrecht during that period. And in the following months things went wrong again …
Light at the end of the tunnel?
In 2018, Nan transferred to the FACT in Amersfoort. After the umpteenth detox recording last summer, an extensive diagnosis was made at the initiative of her treating psychologist Annemiek. She did not trust the decimeter-thick file with stacked diagnoses. A good intuition, because on 2 July Nanneke, her mother and I and her case manager Sophie got the results from Annemiek: Nanneke is autistic. Never diagnosed before, despite twenty years of research after research. Incorrect diagnoses such as borderline with associated ineffective treatment.
Annemiek said that only in recent years, with intelligent girls, autism is detected. Because these girls had learned so well earlier in their lives to adjust their behavior (cleverly copied from others and partly because of their misunderstanding) – so it was not noticed. For me as a father, a number of puzzle pieces fell into place.
However, the light at the tunnel turned out to be a train rushing towards us … Annemiek formulated it nicely when she said that Nanneke had, unfortunately, actually slipped through our fingers like sand.
What could have been better?
You would say: we spend too little on care. The special feature is that we are a global leader in spending money on healthcare in the Netherlands. Addiction is often related to the underlying problems. Seeing through and adequate diagnosis is not easy in practice. And once received a stamp …
To me a standard set of tests on, among other things, ASD (Autism Spectrum) seems logical, as well as to repeat this test after a few years if no improvement occurs.
Nanneke lived under supervision at Kwintes, I found her several times with bottles of liquor around her. And then emptied them. When I asked why Kwintes did not do that: “If we are not allowed, then we are on the property of our customers …”. You would say: drunk (literally applicable in this case): but maybe it helps if you realize that some Kwintes clients go to their (pro bono) lawyer for things like this …
As a father, parent and close family I had a lot of sessions at Jellinek in Amstelveen, especially for partners, family & friends. You have a natural tendency to do everything for your addicted child or partner. And completely disregard yourself, in retrospect also at the expense of pressure on the relationship with your partner, our three other children, family and friends.
Learn and dare to draw a line, say no, if necessary call the police and file a report to obtain an RM (Judicial Authorization): these are all steps that you yourself struggle and learn. Advice: listen to others and do not expect it to “just happen”. And an addict, when the “pull” resumes, will do anything to get his or her convenience, do not make any illusion in that regard!
Last but not least, and that has to do with money and / or efficiency: the desire for reporting at the micro level, top-heavy management structures, fewer hands on the bed, lack of transparency (Which institutions are actually successful? What does that success look like? ?) and breached privacy laws are aspects that definitely need attention and reconsideration.
Nanneke started this website six months ago. Just2Reveal stands for:
… just to reveal …
In memory of her we would like to offer people who are struggling with their addiction, their loved ones and social workers a place to ask questions, to stimulate them and to share practical experience with each other.
A driven team of HBO-IT students from Windesheim University of Applied Sciences helps set up this community. Do you also want to contribute? Then look here.
For privacy reasons, several names in the story have been changed to fictional names.