- Which doctor to trust?
- Find out all about the disease. Only where?
- Which treatment method should I choose?
- Who to complain to?
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Hundreds of doctors, each advising something different, and you do not know who to listen to, what treatment method to choose for a loved one, sick person, whether to stay in the country or sell out and take her abroad. And when a sick person does not wish to be told about his illness, you are completely alone. Karol Strasburger talks about the problems of caregivers of chronically ill people.
Karol Strasburger , an excellent theater, film and television actor, host of the popular game show "Familiada" (TVP2) since 1994, twice in his life experienced the responsibility of caring over a close, chronically ill person. The first of them was his father Edward, and the second was his wife Irena, with whom for many years they formed one of the most compatible and loving marriages in Polish show business. It would seem that for a person as recognizable and liked as Mr. Karol, navigating the Polish he alth care system will be easier and easier.
- Not true - says Karol Strasburger. - It was just as difficult for me, and in some respects even more difficult, than for unrecognizable people.
In order to draw attention to the needs of caregivers of sick people, Mr. Karol took part in the "Heroes of everyday life" program that touched upon this social problem, carried out as part of the educational campaign "Medical nutrition - Your meals in the fight against disease". According to Mr. Karol, what are the most important problems of caregivers that determine the process of medical care and mental support for patients?
Which doctor to trust?
The disease begins, so you go from doctor to doctor to find out something specific: what is the diagnosis, how and where to treat the disease, how to help the sick? This is the minimum you expect from a medical professional. Meanwhile, each doctor says something different, interprets the test results in a different way, and recommends different therapies. Who is to decide on the choice of treatment, facility, therapeutic method? Either the sick person or his guardian, that is people who are completely ignorant of it. The sick person is often too weak physically and mentally, so this task falls to the caregiver. So you must first choose who to trust, who to entrust the life of someone you love. And what should you consider when choosing? With a professorship, scientific achievements, opinions on the Internet, or maybe an approach to patients?
I experienced it twice. This uncertainty: who to follow, who to trust completely? And I know what internal tragedies caregivers go through when they have to make such decisions. It's like balancing on a thin rope hanging between skyscrapers - every step can be false. And when you trust someone by listening to your intuition, then you have to …
Find out all about the disease. Only where?
- Of course, from a doctor - the mind prompts the most logical answer. But this answer is only apparently clear. In fact, Polish doctors are usually unable to convey their medical knowledge to patients and their relatives. They use specialized vocabulary to deepen the impression of their expertise, but it is too difficult for the patient and his relatives if they have nothing to do with medicine. Moreover, I met doctors who were rude and dry, and they only wanted to end the conversation quickly. What remains? Other patients with similar experiences, NGOs working for specific groups of patients and the Internet. And once you find a doctor who can talk to you, you face another dilemma …
Which treatment method should I choose?
Instead of one clear clue: "we do this and then then and then", you learn that it is possible to do "this or this, then or then", but what will be the effects of "this or that ”It is not known. And suddenly it turns out that it is you, and not the doctor, who must take responsibility for choosing a medical institution and the formula of treating a sick person. And be wise man and choose: drugs, treatments, places. It is not so bad if the sick person is insured and the medicines he gets or the operations he has to undergo are reimbursed. And if hope is only given by treatment not subsidized by the state, then what? Are you going to sell yourself out and move the sick person abroad?
Who to complain to?
A caregiver of a sick person in Poland must be a good "information seeker" in order to have the greatest possible knowledge about the disease of a loved one and a good organizer and logistician to establish a plan: where, when, what visits, consultations, tests, treatments, how to avoid queues at surgeries, how to prove sick. But most of all, the caregiver of the sick person must be extremely mentally strong.
I, like many people, was in a more difficult situation that my wife wanted us to keep her illness a secret. Both in front of our family and friends as well as strangers. My wife did not want to be treated as a seriously ill person, we lived with the hope that she would recover from the disease and we did everything to make it happen. We were also afraid that this information would "leak" to the media andour very personal affairs will be made public. We didn't want to include strangers in our lives.
So we pretended everything was fine. But it was me who had to think of answers to the following questions: why doesn't my wife work, why don't we go to parties, why don't we go with friends, why don't we travel, why do we mostly stay at home?
So I was left completely alone with many matters, decisions, problems, emotions. I missed someone whom I could call at any time to complain, advise, hear the emphatic: listen, you have to do this and so and I know for sure that it will be fine. We are not deceiving ourselves: people, even empathetic ones, with their hearts in their hands, only have a moment for us. Just for a handshake, a short conversation, for reassurance: I believe in you, you can do it.
In key moments, we, the carers, are left alone and we have to solve our dilemmas ourselves. Back then, I really wanted to have support from a doctor, someone on the phone who would say: don't be nervous, come, we'll check what's going on, we'll give you some advice. But doctors didn't usually answer calls, avoided me and answering my questions, constantly rushing from one patient to the next. I even understand them. There are too many people they need to help. But it would be useful to have a facility where the caregivers would receive substantive help, especially in crisis situations, and mentally support. People who must have the strength greater than the sick to overcome both the disease and their own weaknesses.
I wasn't an angel of patience. I was overwhelmed by: anger, regret, sadness. I was nervous too. I know that you are probably experiencing the same. Such a rebellion: why me, why has it happened to me? But it wears off after a while. Reason, love, care for another person - win. I wish you, dear carers, that there are as few first moments as possible and as many second ones as possible.Magdalena Gajda A specialist in obesity disease and obesity discrimination of people with diseases. President of the OD-WAGA Foundation of People with Obesity, Social Ombudsman for the Rights of People with Obesity in Poland and a representative of Poland in the European Coalition for People Living with Obesity. By profession - a journalist specializing in he alth issues, as well as a PR, social communication, storytelling and CSR specialist. Privately - obesity since childhood, after bariatric surgery in 2010. Starting weight - 136 kg, current weight - 78 kg.