René van Neer has dementia. And he knows it. “Fortunately, it’s not a brain tumor”, is his first reaction to the diagnosis. Together with his daughter Stella, he wrote a book about his illness. A Rarity. The least Affected are able to reflect on their Situation.
Never a quiet. Every Moment can be omitted the memory. In the evening, you know that you had a visitor. But who was it? You agreed to something? You made notes? Where are the? You live in constant uncertainty. And in Chaos.
Against this fallen world, only one herb is grown: okay. What goes with what? And where what is? Grouping and Naming the new challenge for René.
Everything he stretches a budget rubber – two individual pens on the Desk, and four spoons in the kitchen drawer; even a roll of toilet paper, a rubber with the slip of paper: toilet paper.“
Father-Daughter Team
With these lines of code Stella to describe Braam and her father is René van Neer, the incurable disease of Alzheimer’s. The Dutch journalist wrote together with her father over decades of different books, so I have Alzheimer’s: How the disease feels like (Beltz, 9,90 Euro). The last book of the father-daughter Duo.
At just under 200 pages, rené’s four-year fight against “the natural Endkrankheit of the people is told”, such as dementia in the book. Sometimes the Alzheimer’s Patient speaks, later, when he can’t do it anymore, filling his daughter Stella in the gaps.
René tries to dementia as a “Abenteuerzu see
René van Neer knows he has dementia. At least in the beginning. It informs, lends books on the disease, writes notes. Trying to understand dementia as an adventure. Struggling to come up with little Tricks against the forgetfulness.
“Notes are supposed to be the rescue. René writes about the whole day. All of the new post-things to write down notes in the calendar. And: in other areas, the possibilities of Exercises against forgetfulness, search for example.
But even this piece of paper, he loses, and if he finds you again, he stands in front of a puzzle. Call a doctor. But which doctor and for what“?
How does it feel to forget everything?
Sad, touching, sometimes whimsical and funny, the scenes of everyday life, the René and his daughter Stella are signs:
“On the way back, an unknown woman from the Bicycle increases. Hi Stella, Day, Uncle, René! This must be a niece. You know me yet?, she asks René. He nods violently. And you? you ask me. I, too, affirming the question with a nod of the head.
When she pulls away, looking at each other happily. What was her name again? We don’t have the slightest idea. René can hide behind Alzheimer’s. This is the advantage of my illness. I may make mistakes. But in twenty years you’re turn, comforts me.“
How Alzheimer’s Sufferers really feel, is usually not easy to understand for outsiders. René van Neer can speak in his more sharp moments about the own disease, even reflect. A Rarity.
Because displacement plays in many patients a great role. You don’t want to have dementia not true, not with the downward spiral beschäftigemn that the disease inevitably brings. In other patients the disease is not detected according to the German Alzheimer society e. V. to be late, so that the Concerned are able to reflect deeply.
Styrofoam in the head
How do you feel about dementia? The writer and scientist René feels it is so, as the polystyrene was Inside of his head. At the slightest touch of the white mass, crumbling parts dissolves into individual.
Also, René is crumbling more and more. At some point, it will not find the way to the toilet, must wear diapers. Can recognize an Orange, but not more than such name, towards the end he no longer recognizes even his family.
If I had to Say
At the end of the book both set up a requirement catalogue with the title If I had to Say. Ten points to summarize what René wants from his own experience for people with dementia. An Excerpt:
“If I had to Say;
- … would be the policy measures for the “dementia-Explosion”,
- … are our wishes for care at the center,
- … would the people with dementia’s right to privacy,
- … would have the dementia power over life and time. We are unable to.
- … would rest medication banned
- … could eat the dementia or each day to the full“
The nightmare has an end
René is excited about his Ford list, as he calls them. Ask when they will be implemented. Stella dampens his enthusiasm, tells him that it may take a while. Even if he can’t follow all the Details: René enjoys the intensive exchange of information and the presence of his daughter. She writes:
“The deepest longings of people with dementia, the proximity of the other. Someone who accompanies a through the dark night of the uninhabited spirit. To speak with René: “A man alone can not endure.
Four years René has fought against the disease and for his Dignity as a victim, in March 2007, the writer dies.
Finally freed, the nightmare has come to an end. Never more diapers, no more lift. Never more pain. Never more loneliness. Never again no more words.
Never more care not to get, he deserved so much. Bye Papa, bye-bye, dearest friend. There you go, with an undetermined destination.“
Dementia: help for relatives
Relatives of dementia sufferers can turn to in case of problems and questions to the Alzheimer’s phone of the German Alzheimer’s society 030 – 259 37 95 14 or 01803 – 17 10 17 from Monday to Thursday 9-18 and Friday 9-15 clock.