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What It’s Like to Suffer from Dementia at 20

Because of his childhood dementia, Johannes Müller is slowly forgetting the world.

I’m in Room 31, Paediatric Ward 3 of the University clinic in Hamburg-Eppendorf in Germany. A paper garland is hanging from the doorframe, and the walls are covered in pale yellow wallpaper. Johannes Müller is lying in bed – his eyes are open but his body is motionless. His mother, Elke, stretches her hands out towards him and is trying to get him to stand up. But Johannes doesn’t want to; instead he pulls her hands to his chest.

Outside the hospital you can see birds jumping on tree branches and the drops of dew glistening on the grass. It’s spring, but Johannes doesn’t really comprehend any of this. He suffers from Neuronal Ceroid Lipofuscinosis – in short NCL. It is a rare neurodegenerative disorder, better known as Childhood Dementia. He is only 20, but his brain has been declining for the last 16 years. He can’t see and he can hardly talk. Bit by bit, he is forgetting the world.

According to his mother, Johannes knew his ABC before kindergarten. He also learnt how to speak English (German is his first language) and he used to ask about the meaning of so many words at dinner that Elke wouldn’t get round to eating until her food was cold. Soon after that, he learnt how to say “Hello” and “Goodbye” in Turkish and Latin.

But when he turned 4, his eyesight began to deteriorate. He would run into door frames, hold books upside down and in the evenings, he would sit closer and closer to the TV to watch his programmes. Glasses didn’t help and the doctors were clueless. A little later, Johannes had an epileptic fit. His mother was reading him a story when suddenly his eyes rolled back into his head. The doctors diagnosed a fever-induced seizure, although he didn’t really have a fever.

Why was her son having epileptic fits? Why was he going blind? Elke was desperately looking for answers until she read an article in a newspaper about NCL. Only one in 300.000 children is affected by it, while there are about 150 patients in Germany. So far, there has been no cure.

When a nurse walks into the room Johannes doesn’t react. She talks to him, and tries to get him to get up too. But the only voice that he listens to is his mother’s. “If you come stand up, you’ll get a hug,” she says. Johannes laughs a bit, moves his hands through his brown locks and turns away. “No.”

She knew that he would react like this. When Johannes refuses to do something she asks of him, Elke has to run through a ritual – she threatens to kiss him, talks about riding the tube or asks about the place where Julia, his friend from school, works. Being on the tube and around Julia are some of the memories Johannes hasn’t lost yet.

This morning, Elke can’t get through to her son with those memories. He doesn’t react to any of it. He just lies down, pulls his hands away from his mother and kicks the nurse away. He screams and makes incomprehensible noises. Johannes is big – he weighs almost 200 pounds. His mother and the nurse move him to the wheelchair with the patient lift. He just sits there without any bodily tension, his arms lie limp in his lap. There’s an incontinence draw sheet under him, two straps around his legs, and a red belt in front of his stomach. Recently he has been falling out of the wheelchair a lot.

Johannes used to get excited about visiting the hospital. He’d shout, “We’re going to the scientists!” But half a year ago he suffered two epileptic seizures in a row, and since then, he has been forgetting a lot more quickly. At this point he can hardly communicate at all. It can take days for his mother to understand what he wants. Sooner or later his motor functions will shut down completely, and finally his organs. No one even knows how much of his surroundings he can even perceive. The life expectancy for people with NCL is about 20 to 25 years.

Elke and her son live on the first floor of an apartment building in Homberg, about an hour north of Frankfurt. She’s tried to get adjustments to her flat so that it’s wheelchair accessible, but she still hasn’t received approval from the local council to do so. When she talks about it, you can hear the frustration in her voice. Because Johannes’ disease is so rare, requests for care services take much longer.

Elke’s everyday life revolves around taking care of Johannes. She feeds her son, helps him go to the toilet and sleeps on a sofa bed in his room. During the week, she gets up at 5AM – the only time that it’s quiet at home and she can have some time for herself. She goes to the kitchen, turns on the radio and makes herself a cup of green tea.

She wakes Johannes up at 6AM. She needs two hours to wash him, dress him and then lift him into the wheelchair. Her boyfriend lives in the flat above hers. He doesn’t really help her – she says he couldn’t deal with her son’s illness. A driver picks up Johannes at 8AM to take him to a workshop for disabled people in Marburg. At that time, Elke drives to work in Gießen. She listens to Mozart in the car to relax.

When Elke speeds up pushing the wheelchair, Johannes laughs. Elke laughs, too. “Our connection is probably deeper than if he had been healthy,” she says. When they’re in the car, she puts on an album by Die Toten Hosen – a German punk band. Suddenly Johannes sits up. He lifts his hands, starts rubbing his fingers together and leans back. Apparently that what he does when he is happy.

According to Elke, when he was younger he always wanted to turn up the music loudly in the car in order to annoy people passing by. Since then he has forgotten a lot – the birds on the trees, the dew on the ground. But he can still remember Die Toten Hosen. He listens to them sing “Unterwegs auf der Straße, die dich nach morgen führt / Im Rückspiegel siehst du all die Jahre hinter dir” – driving on the street that takes you to tomorrow, you can see all the years behind you in the rear-view mirror. In moments like that, Johannes can briefly see in that rear-view mirror, and Elke can forget everything else about her son for a short while.


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