“Help us, we are on the edge of endurance, the system must help us when we need sick leave”

She is by his side every day, carrying a heavy burden on her back, under which her body recently completely collapsed. The first time the same thing happened three years ago.

– I reached the edge, burned out. I no longer had an atom of strength, my body disobeyed, my hands were no longer mine, my heart skipped a beat. All the alarms went off, I crossed all the borders, says the tired mother.

The right to sick leave is only on paper

Her story is actually the story of all caring parents who have the right to sick leave only on paper, because in practice the system does not have enough capacity to take care of their children while the sick leave lasts. Children should be temporarily placed in an institution suitable for them.

Marica ended up in the hospital, on successive infusions, completely paralyzed. Diagnosis: chronic stress and fatigue. She was on sick leave for a month and a half, to which parents-caregivers are entitled, but during that period the system failed to find a solution for Anta – adequate accommodation where she would have all the necessary care.

– They tried, I really have no objections, but there is no adequate accommodation. The husband opened a sick leave, but that is not a solution, it cannot be a solution. He works, and he works in shifts, he cannot take sick leave, someone has to earn money for the family. We also found helpć at home, but they told me in social welfare that ‘there is no tool’ with which they could help us financially to help us. we cry at home. Well, we pay it ourselves, and my allowance as a parent-caregiver is 800 euros, said Marica. The only option offered, he continues, was to hospitalize Antu.
– And yes, what, lying in the Kinderbet until I come to get him? That was out of the question, continues the mother.

The regulations, and their implementation, are absurd: the parent-caregiver has the right to sick leave, but the system has no place to adequately accommodate the child during that time – there is insufficient capacity. On the other hand, the other parent cannot take sick leave for the child because it is already has a caring parent. And if the caring parent stays on sick leave for longer than two months, he loses that status. But the care of the child will remain for him, without compensation, if the system has nowhere to go with the child, the institutions are full. Absurdity after absurdity.

I sat and cried

On top of everything, a huge feeling of remorse.

– That constant psychological pressure, my own, that I must, that I must not falter, that I must be strong. And I can’t, it doesn’t work, my body refused obedience. When I activated sick leave, I sat and cried. I couldn’t raise my hands, my heart was vibrating. I no longer knew how to help myself, says Marica.

She has been with her son non-stop for eight years, he does not sleep, and lately everything has piled up. The boy had constant ear infections and was banging his head on the floor because of the pain, he could not speak, he could not articulate what was bothering him. He had to have an operation.

– And when, for him, I should have been the strongest, I was the weakest. I don’t even know how I performed his surgery. I was completely empty, dead. After the operation, his wound opened up, his ear was half hanging, and that finished me off – my head was no longer on my shoulders. So many problems, diagnoses, torture all these years, and there is no support from the system, says mom Marica.

– I broke down, I couldn’t get out of bed, eat, drink, hold the child. I was completely blocked. And everyone tells me to stop, and how to stop, who will take care of Anti… And there at the bottom, alone, aware that there is no one and that there won’t be anyone for a long time, I got up once more, gathered the strength and took care of myself.. For us.. For the family.. continues the mother.

They ignore us on every level

Through the association Malo &ccarun;udo for children with difficulties and people with disabilities, she is the leader of the movement, she tried to reach the authorities in order to discuss the sick leave of the caregiver’s parents, which is a dead letter on paper, but she only encounters, she says, being ignored.

– Ignoring at all levels. And we, the parents, are broken. If there is no capacity in the system for our children while we are on sick leave, then let them at least provide us with financial assistance. for help in the house, which we will find ourselves, said the mother. If she had helpć assistant, he adds, so she wouldn’t crash. They submitted a request for assistance, to which children of caregiver parents are now also entitled, but who knows when and how…

– Ž living for years on the edge, without real support, is not a choice. It is a path that leaves consequences. The fall of caring parents is not the fall of one person butć the fall of the whole family. I just hope that it won’t be too late the day someone is finally there. With us, things only start to change too often when it’s too late. Even though, the way the system works, they push me into the grave alive, I’m still alive, says the exhausted mother.

Back in December last year, we asked the Ministry of Social Policy how long, on average, caring parents wait for alternative accommodation for a child, and whether there are enough places in institutions for children who need to be taken care of while the sick leave lasts.

The time required for accommodation or securing other adequate services, they answered, varies from case to case. In cases of need for immediate accommodation, the system provides an accommodation service without delay, they note.