Everything starts with a subtle “crack”. It doesn’t hurt, you don’t even know it. But month after month, year after year it grows, deepens, until one day you notice that your life is broken in half. For Stavros Terzakis, the “crack” came in 2014, when an accident left a family loved one with a severe mobility problem, which added to the health problems of old age. Taking over his care, in the obvious Greek family way, he didn’t realize that his life was about to change radically.

That he would miss out on holidays, carefree holidays, that the same shoulders would be lifting double and triple burdens, that his “idle responsibilities” would be raised, as he used to say.

“It doesn’t happen suddenly, it happens slowly. You accept new responsibilities piecemeal, one by one, and one day you realize you can never give them back because the other person is sitting at a different level of health. So you take them on your shoulders and move on.”

They are the unseen workers of life, a hidden group of “professionals” with no financial rewards, no rights, no recognition. They are the so-called family caregivers, i.e. the parents, siblings, spouses or children of patients with a chronic illness, physical or mental disability, or someone who needs long-term care. It has been estimated that today one in 40 people – mostly women – are carers, providing dozens of hours of care a week. “These people suffer from a double trauma, on the one hand the chronic illness of their loved one and on the other the realization that they have to respond to a role they did not choose, but life created the conditions that imposed it on them,” Kalliopi Panagiotopoulou, a psychotherapist and member of the scientific committee of the Greek Network of Caregivers EPIONI, tells K. Stavros Terzakis notes:

“It is a role you choose. Many people might say ‘I’m not involved, let the patient go to a structure and I’ll visit them once in a while’. Many, in short, could park them somewhere. We choose the role of caregiver, we are just unprepared for it.”

Caregivers, in addition to the daily responsibilities concerning the patient, are called upon to make critical decisions about the treatment process, to evaluate the steps taken so far, to plan the next ones. At the same time, they have to take care of themselves and other family members, whatever the financial cost. The strain on their physical and mental health from the volume of responsibilities is given and critical.

“We have seen that these people are called upon to cope with their role in life and also to care for a chronically ill person, resulting in them neglecting themselves,” says Panagiotopoulou. Carers are at risk, among other things, of depression, anxiety, physical and mental burnout, suicidal ideation and self-destructive behaviour, and in general a decline in their quality of life.

“If we as a society do not take care of caregivers, we will have a new army of chronically ill people with diabetes, depression, heart disease,” the expert stresses.

Many people are unaware that Labour Law 4808/21 established several rights for carers and recognised their role in the community.Frog syndrome

“It’s the boiling frog syndrome,” says Terzakis. “The frog, if you throw it in a pot of boiling water, it will jump out. If you put him in cold water and slowly warm it up, he’ll try to adapt. So will the caretakers. Without realizing it, they get burnout. I, for example, haven’t had a vacation in six years. Every summer that happens to me I don’t mind, but it’s not normal. The idle speed of your life picks up, but you, like the frog, can’t jump out anymore.” You’re exhausted trying to adapt to the new demands of life.

One of the reasons for founding EPIONI was this, to recognize the status of the unofficial caregiver. “These people do great social work, they reduce the costs of caring for the chronically ill for the health systems, they contribute to their functionality, to their treatment. The patient and caregiver pathway is shared. The increase in the quality of life of one affects the quality of life of the other,” stresses Panagiotopoulou. Some of the requests are flexible working hours, caregiver leave, an allowance, support for families with home care services for the patient, but above all information and psychological support. The Labour Law 4808/21, passed following a European directive, established several rights for carers and recognised their role in the community. Many, however, are still unaware that they can claim these rights.

It is strange, but even before the accident of his relative, on 17 March 2013, on the day of the World Caregiver’s Day, Stavros Terzakis had, out of sheer curiosity, attended a relevant conference at the War Museum. “I don’t know what had drawn me in. The auditorium was full of people, mostly relatives of Alzheimer’s patients. I still remember the presentation by a psychiatrist. “Be careful, because before the patient is lost, you caregivers are in danger of losing yourselves.” That’s why it’s important for the caregiver to take care of themselves as well.”

Reprinted from the Kathimerini article: