Reversed roles

People afflicted by a chronic illness in Germany don't necessarily turn to a nursing service for help in their daily lives - often, underage children end up attending to their parents, researchers at Witten/Herdecke University have found.

Astrid, 44, was diagnosed with Multiple Sclerosis (MS).

When the doctor told her how the disease would likely develop, the mother of two daughters said she felt she was falling into an abyss. "The worst part was to have to depend on others to help me and not to be able to take care of the family any more," she told Deutsche Welle. She knew she would have to depend on her older daughter's help. Her greatest fear was not being able to live at home with her daughters.

Ignored phenomenon

Researchers at the Institute for Nursing Science at Witten/Herdecke University initiated a nationwide study about a phenomenon practically non-existent in the public awareness: children in Germany who care for their chronically ill parents.

The study showed that more than 200,000 minors attend to their chronically ill parents. "They do everything adult relative carers do too," says the university's Sabine Metzing-Blau, listing things like helping parents get around, attending to issues of personal hygiene and dressing wounds, and making sure fathers or mothers take their prescribed medicine.

These children often take over household chores and caring for younger siblings - they take on a great deal of responsibility. The child carer will also often be the one to console and comfort the parent that is healthy, Metzing-Blau says.

Added stress on children

When parents suffer from MS, rheumatic diseases or cancer, minors rarely lead lives suitable for children anymore. Parents with mental diseases such as bipolar disorder can also become nursing cases.

Astrid's 15-year-old daughter Julia has more than enough to do every day. "I'm the first one to get up in the morning. I dress, help my mother get out of bed and into the bathroom, get her dressed, comb her hair, and make breakfast for the two of us and my younger sister," she says. "Then, I'm off to school." In the afternoon, Julia straightens the apartment, goes to the grocery store, picks up medicine at the drugstore and makes sure her younger sister does her homework. "If the weather is nice, I'll take my mom out in her wheelchair," she says. Julia rarely has time for her friends.

Chronically ill parents are afraid to request professional help from outside the family, Metzing-Blau says. They fear social services might take their right of custody away - a situation that often "results in the families' withdrawal from society."

Doctors look the other way

Metzing-Blau takes a critical view of doctors on house calls that look the other way. "Sometimes, physicians who see that underage children are caring for their parents even pat them on the shoulder and say, good job!" the university expert says, while other doctors try to get nursing services involved. "The families are often not open enough to admit to the gravity of the situation," Metzing-Blau says. "In that case, a doctor will see an expertly dressed wound and a well-kept home, without asking who is responsible."

With that in mind, the Institute for Nursing Science at Witten/Herdecke University created a website that gives children and parents a forum for discussion. The study showed everyone concerned has a need to talk about the situation, Metzing-Blau says. The website also lists links to aid projects across Germany for kids taking care of their chronically ill parents. "You can click on the state you live in and add the name of your city to find out whether there is an aid center near you," Sabine Metzing-Blau says. "What do I do, how do I get there, what does it cost - those are the questions we answer."