Nursing to the End - When people care for their loved ones

On the shelf is the pill box, in which umpteen different medicines are assigned to the individual days of the week, next to it is the pulse oximeter for measuring the blood oxygen content. Sabine Kosmidis puts it on her husband Werner's index finger: "Everything's fine, my heart." She strokes his cheek and straightens his shirt collar.

He smiles timidly and replies quietly: "Oh, my dear..." He sits a little stiffly at the dining table and moves very slowly. She seems to have everything in view, pouring coffee at the same time and looking at the display of the meter. The two have been a couple for 23 years and have been married for 15 years, but seem newly in love. She says he is the best thing that has happened to her in her life. Everyday life is anything but easy.

Everything changed when Werner Kosmidis had an operation on his thyroid gland six years ago, which was actually not a complicated operation. He had to be resuscitated four times, says his wife, and he has been suffering from diabetes since the operation. Again and again he had to be artificially ventilated, twice barely survived sepsis, as well as drug poisoning, cardiac arrest and several serious falls.

Werner Kosmidis is now 71 years old and needs nursing care, he is physically and mentally handicapped. His 64-year-old wife takes care of him at home – in addition to her 25-hour-a-week job as a clerk. And it keeps getting sicker.

Sabine Kosmidis represents tens of thousands of Hamburg women who push the limits of their strength every day to care for their loved ones. According to current care statistics from the State Statistical Office for 2021, which are published every two years for the year before last, around 77,000 people in Hamburg were dependent on care in 2019. Only a quarter of them were treated as inpatients in nursing homes.

This means that the vast majority of those in need of care in Hamburg - around 65,000 - are cared for at home, 22,000 of them, like the Kosmidis family, with the support of outpatient care services. The increased cost of living and energy in particular is bringing families and social institutions to the brink of resilience.

The work of family carers is invisible to the public. Due to demographics and a shortage of skilled workers, their number is constantly increasing, and they are already the mainstay of care. There are not enough places in care facilities, and they are expensive.

The year and a half that Werner Kosmidis lived in a nursing home cost 3,500 euros a month, his wife Sabine calculates. Unlike in the case of parents in need of care, in which the care insurance company steps in completely, spouses have to bear part of the costs themselves.

In order to be able to raise the 900 euros she was asked to pay every month, Sabine Kosmidi borrowed money from friends: "It still wasn't manageable in the long run. The financial burden was also a reason for continuing to care for my husband at home." In return, there is now up to 545 euros a month in nursing allowance and benefits in kind from the health insurance company - "that mainly goes for taxi rides to doctors."

The long-term stress also affects health. Currently, Sabine Kosmidis can hardly walk because of an inflamed hip. The politicians are aware of the problem. "More than 70 percent of the care of relatives rests on the shoulders of a single main caregiver - mostly a woman," reported the Green MP Christa Möller-Metzger recently in the citizenship meeting. "In most cases without any professional help." Every third caring relative feels "extremely stressed or even overwhelmed".

The Barmer Krankenkasse sets a different focus in its “Care Report” every year, in 2018 it was the caring relatives. According to these figures, too, many are at their breaking point and have fears about the future and their existence. Overall, they are ill more often than others, and more than half of caregivers are at risk of developing depression. Sabine Kosmidis also keeps coming up against her limits, the last vacation was four years ago when they were together in Dahme on the Baltic Sea.

The school for relatives was founded in Barmbek ten years ago so that relatives can realistically assess the care work right from the start and are informed about their financial rights. In addition to independent, free advice, there are courses for anyone who would like to help with the care of those in need of care.

So-called neighborhood help, in which time is regularly spent with those in need of care and relatives are taken care of by the hour, could be a useful addition, says founder and managing director Martin Moritz. He is of the opinion that caring relatives should be paid the same rate that care services receive for work, "nobody can live on 545 euros a month".

Even if a nursing service comes three times a day to provide incontinence care, there are still 23 hours that have to be bridged. "Many are too modest to ask for help and care until they collapse themselves." Hamburg is "ill positioned for neighborhood help with the lowest hourly rate in Germany of five euros and the obligation to register," he says . "The corresponding state ordinance should urgently be revised." Registration is now possible online.

Another problem now arises. Rising energy and food costs are putting additional strain on the Kosmidis couple. She recently snapped at a practice employee because of the sheer stress, says Sabine Kosmidis. A full waiting room, tight deadlines, her husband exhausted from lack of oxygen – her nerves were on edge.

The social facilities are also starting to lose their substance, especially since energy prices have been rising. Among others, the Diakonie and the Arbeiter-Samariter-Bund warned of a collapse of the social infrastructure. A survey of its member organizations by the Lower Saxony Joint Welfare Association showed that both the institutions and the people they look after are currently experiencing an existential threat. The organizations are calling for a financial rescue package from the federal government, similar to that in the Corona crisis, but also for long-term investments.

Kristin Alheit, Managing Director of the Parity Welfare Association Hamburg, reports to WELT AM SONNTAG about the precarious situation in the Hanseatic city: “Many families now have to calculate very carefully so that they can make ends meet. Anyone who previously had to check their wallet carefully before going to the restaurant or buying a new device does not have much savings potential.” At the same time, she warns: “Without caring relatives, the care system in Germany would collapse.”

Many services are not called up at all - "because they are not known or the application is too complicated. There definitely needs to be some relief and significantly more proactive advice here.” Alheit also appeals to employers "to deal more with the issues of home care, self-care and caregiver leave". You should proactively ensure the compatibility of work and care.

MPs from the Greens and SPD had submitted an application to the citizenship in September, according to which caring relatives should be given more support. Neighborhood help, among other things, is now to be made easier. The plans are "commendable, but far from sufficient," says Managing Director Alheit of the Paritätischer Wohlfahrtsverband Hamburg: "More low-threshold and, above all, proactive advice is needed in different languages."

For the Kosmidis couple - despite all the problems - care at home is currently not up for discussion. This way they can spend more time together. They sit at the dining table in their small Eimsbüttel apartment and drink coffee together. Werner Kosmidis enjoys being in his familiar surroundings.

If you ask him about particularly beautiful moments, he looks at his wife and answers: "There are so many." Behind her on the bookshelf are many small snow globes to shake, brought from the places they used to visit. Perhaps, Sabine Kosmidis hopes, a trip by coach will be possible again at some point. Then they would have a nice memory.