Work in the children’s hospice: between deathbed and lack of money

Children’s hospice services accompany families with terminally ill children. The work is stressful. In addition, they have to collect donations. The money from the health insurance companies does not cover the costs.

Helena Gareis from the Ortenau Children’s and Youth Hospice Service has been taking care of Maya and her family for more than ten years. She is a bridge builder, she says. She knows the situation of the family and has an overview of possible offers of help. “Sometimes it’s important that we get medical help for the family, psychosocial support. And that we always have an open ear for the mother and the siblings, who often don’t get much attention,” she says.

Don’t eat, don’t speak, don’t walk

15-year-old Maya has suffered from Miller-Dieker Syndrome since birth. When she was born, she was told she would be no more than three years old. She cannot speak, eat or walk.

You can tell how close the relationship between her family and Helena Gareis is when she greets her. Mother Geli hugs her straight away, twelve-year-old Juno calls her Helena and two-year-old Semino wants to show her his fire engine right away.

Maya is sitting in the middle of the open living room, in her wheelchair, a colorful blanket over her legs. A large oxygen tank looms behind her, connected to her nose by tubes. Gareis greets her affectionately, talks to her, strokes her hand and leg.

Very close

You can tell how close she feels, even though her service looked after 140 families in the past year alone. “140 families are 500 people,” says Gareis. As the head of the service, she knows everyone. Across Germany, the families of 50,000 children who are terminally ill and will die are cared for. Maya’s life is also constantly on the brink. Children like her, with rare diseases from birth, are most often cared for by children’s hospice services in Germany. Their offer is free for the families, they can take advantage of it from the time of diagnosis. It is usually not possible to predict how long the accompaniment will last.

Maya is now 15. She has been in the hospital almost continuously for the last six months. As her mother talks about it, tears come to her eyes. “You tear yourself apart at the moment when you are with one child in the clinic. You hope that it will survive the next hour. And the other children are then distributed to friends and family, that was the case for the last six months.”

Of course you are where it burns the most. But she needs her other two children, too. Juno is well into puberty, little Semino in the age of discovery. The children’s hospice service is a great support and would always help. “They are always approachable, always there when things are going badly and not only for the parents, not only for the sick children, but also, as is the case in our family, for the other two children. That is so important .”

Time for the siblings

While Maya’s mother is talking, Helena Gareis sits with the little one on the floor next to her and lets plastic frogs hop into a bowl, all of his undivided attention. She or her employees regularly go on trips with Sister Juno, the last time they went to see a llama. “Helena is a good friend for me,” says the twelve-year-old. “That means I have confidence and tell her a lot.” She can also talk to Gareis about the fact that it always looks like her sister is about to die. Not afraid to hurt her or make her sad.

They currently see each other once or twice a month, since the care has been going on for ten years and so many other families also have to be looked after. If you were to form an average, there would be one or two visits a week to families across Germany, reports Marcel Globisch from the German Children’s Hospice Association. Because there are only 170 outpatient services, they often have to travel long distances. Helena Gareis also drives through all the Black Forest valleys.

Too little money, too few employees

Her service currently has two other employees and one part-time employee. In addition, 35 volunteers, she would need 50. Because there aren’t any, she herself is always on her deathbed and has to collect donations in the remaining time. Only part of their work is funded by health insurance companies. Bereavement support, group offers for siblings or counseling costs are not covered, for example. In addition, there is a lower funding rate for children than for accompanying adults.

For her children’s hospice service, Helena Gareis needed around 350,000 euros last year. She has to cover 75 percent of this with donations. There is no major donor and so she collects tirelessly. Among other things, at private celebrations, clubs, church concerts. “In fact, you have to pay for it with your own private life,” says Gareis. She is always on call for families in need. “It happens again and again at Christmas, the table is just laid, the Christmas tree is lit. And then someone calls. A child is doing very badly, a child has died. So far I’ve never been able to say, I don’t come now.”

Vital Desires

Her work is meaningful and she draws strength from it every day. At the same time, she would like more financial support from the state. So that she and the other children’s hospice services don’t have to constantly worry about the money in addition to the difficult work. She would much rather use donations mainly to fulfill family wishes.

Just like Maya’s family. Mother Geli wants a car that her whole family can fit in and the medically necessary equipment for Maya, especially an additional oxygen supply. Your current one is way too small. She had a breakdown recently. She had to call an ambulance for Maya. If she had waited for the ADAC to repair her car, Maya would probably not have survived.