“Here we were on the roof of the Empire State Building in New York,” says Jutta Umsonst, enlarging the photo on her tablet. It shows her husband Ulf and her, arm in arm in front of a skyscraper backdrop and a blue sky.
The picture was taken on vacation last year. Since then, a lot has changed for the couple from Jugenheim in Rhineland-Palatinate: 71-year-old Ulf became a long-term care worker, and 66-year-old Jutta became a full-time carer.
During the Easter holidays, Ulf Umsonst suddenly collapsed in the bathroom. After many examinations in the hospital, the diagnosis was clear: he was suffering from kidney cancer with metastases in the head. They had started bleeding and were causing symptoms like a stroke.
After two operations and long hospital stays, he comes home in need of care - a drastic change. “It was just bad for us: we cycled 80 kilometers on Thursdays and were actually deathly ill on Saturdays,” his wife remembers. Now care determines the couple's everyday life.
Ulf Ohnest lives on the ground floor of the house because he can hardly walk up stairs. In the morning his wife helps him out of bed. With a walker he manages to get a few meters to a chair. There, Jutta washes his face for free with a washcloth and helps him brush his teeth. Even small purchases need to be planned carefully.
Being alone is a challenge for the patient. "He's afraid that I won't come back. We then communicate via cell phone, and he also calls while we're shopping," reports his wife. "That's understandable because if I didn't come back - for example due to an accident - he would be completely helpless."
The couple is not alone with the care: their daughter lives next door with her family, and Jutta Umsonst's 87-year-old mother also helps out. “You just have to be grateful when you have family members who care,” says Ulf Umsonst.
The dialogue with health insurance companies is particularly demanding. Applying for aids for care is complicated. For example, the health insurance company initially refused to provide a nursing bed. After two reports, Ulf Unsersonst was granted care level 4 by the medical service. The couple now receives care allowance. If a nursing service came several times a week, they would have to forego large parts of it. Nevertheless, they would like to take this step soon - to relieve the burden.
How care should be organized and, above all, paid for in the future is one of the biggest reform projects of the black-red federal government. On September 30, the Federal Cabinet approved the draft of the Care Reorganization Act, which is intended to close the expected financing gap of around eight billion euros for 2027.
The law should now be discussed and passed in the Bundestag. For example, it provides for an increase in the surcharge for childless people by 0.3 percentage points to 0.9 percent. In addition, the contribution assessment limit for nursing care insurance is to increase by 300 euros per month.
Contrary to what was originally announced, the nursing care insurance continues to fully cover the pension insurance contributions for caring relatives. “When it comes to caring relatives, I don’t cut corners,” emphasized Health Minister Carsten Linnemann (CDU) in the ARD report from Berlin at the end of September. These people “support the entire system, they are the silent heroes of our everyday life.”
A commission of experts will take care of major structural reforms in care. According to the Health Minister, it should present proposals by the end of January on how the care system can be structurally prepared for the 2030s. The commission was actually supposed to be appointed last week, but the date was postponed due to the need for consultation within the government coalition.
Waltraud Klein from Mayen in Rhineland-Palatinate wrote a letter to Federal Health Minister Linnemann and told him her ideas for nursing care reform. She is on the executive board of the association We care for Rhineland-Palatinate e.V. and has looked after her parents herself for many years.
"The financing question is important, but it should not be confused with care reform. Answers must address the actual causes, not the most convenient adjustment screw, finances," explains Klein. "Family structures have changed in recent years; children, for example, live less often near their parents. Care must also adapt to this." However, that hasn't happened yet.
Money, time and energy continue to be invested in a dilapidated and complicated system. New offers that provide information about care services, for example, would be invented instead of bundling or dismantling structures.
Klein, for example, calls for supply centers that provide various offers in one place. “It would be desirable if day and short-term care, night care, outpatient care services, support and advice services came together in one building,” says the care expert. Such structures shortened distances, made care organization easier and noticeably relieved the burden on relatives.
She also recommends involving companies and employers in order to sensitize them to the topic of employment and care work.
Waltraud Klein appeals to everyone to address health and care issues in a timely manner. It is important to talk to the family about it. "Unfortunately, many people think that the state regulates everything. Each individual has to take care of themselves and can relieve relatives of difficult decisions with a power of attorney and a living will."
The care reform is also an issue in Jugenheim for couples for nothing. Jutta has been active in local politics on a voluntary basis for 32 years. As a carer, she would like politicians to look more behind the scenes of care.
“Sometimes you just have the feeling that they are increasingly losing sight of the grassroots,” she says. Despite all the need for reform in care, a central concern for the 66-year-old is that the burden on patients and relatives is taken seriously despite the cost pressure.
