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They are lonely, tired, they feel guilty that there is nothing else they can do. On the outside, they pretend to be tough, on the inside they struggle with difficult emotions, which they often allow themselves to recover only after the death of a loved one. Cancer destroys not only the sick person but also those who care for him. Depression, post-traumatic stress disorder, anxiety. The National Health Fund does not have a special aid program for them. Recent studies predict that every fourth Pole will develop cancer.
Małgosia Zawidzka has been guarding the health of her husband, who has been suffering from a malignant tumor of the salivary gland Adenoid cystic carcinoma (ACC), for two years. She admits that since they found out about her husband’s illness, their lives changed by one hundred and eighty degrees. Cancer became the main inhabitant of the house. It is he who sets the rhythm of their lives. And she talks about the struggle with cancer “we” from the very beginning. – I knew we were going to go through this together. Visits to doctors, hospitals, chemistry, hospice, ambulance at night. It happened that I went to specialists alone, because Rafał was too weak – he says. Like many caregivers of cancer patients, Małgosia quickly had to become tough, resistant to stress and learn many things. – I do injections, dressings, put on cannulas and connect drips. I keep an eye on my medications and I am the first to know when something bad happens with Rafał – she says and adds that a nurse could not live with them, and she does not think that she could come to them so often and help for free. She trained a bit from the nurses she knew, and then she was even better than them. Rafał’s parents help in the care. They all live together because the couple’s apartment has been put up for sale in order to get money for non-reimbursed drugs.
– We are very comfortable now, because when I go to work, Rafał is not alone. He cannot be alone, because it happened that he would lose consciousness, had pressure surges – says Małgosia. Time for yourself? No such. She does not remember the last time she was alone on a walk, met her gossip with friends or treated herself to a beautician. – I know that Rafał feels safe when I’m with him. He would do the same for me. I’m not complaining – he says. A psychologist from the hospice in Puck under their care, however, told her to find some time for herself, because she is very tired. She doesn’t see it herself. Recently, however, for the first time in a long time, she went to the cinema with a friend.
Murderous sacrifice
There are thousands of carers like Małgosia who take matters into their own hands in Poland, because almost 400 people suffer from cancer. people. The number is constantly growing. Some people do not ask themselves “Do I still have the strength?” But do what is theirs. Others are silent. When asked by the neighbor how he is doing, the guardian replies casually that somehow it is not bad. And the neighbor thinks care is about serving tea and making dinner. What is the first shock in patient care? Difficulties encountered during diagnosis and treatment. – We wait 5-6 hours for each visit to the oncologist – says Michał, who looks after his father with pancreatic cancer. He does not want to reveal his name because he lives in a small town, he does not want people to talk. After each such anticipation and listening to various stories from the sick, he has a headache. Michał is there for his dad’s every call, he takes him to the doctors, doses medications, and looks for new treatment options. – I sit at night on the Internet and read about new methods of treatment, I am active on Internet forums – he says. At night, he also listens to whether his dad is okay. Were it not for the good heart of his employer, which allows him to take days off whenever he has to, he would have to quit his job. He doesn’t remember the last time he went out with his buddies for a beer. Long-term cancer carers find it difficult to accept a little bit of pleasure. Building such consent is very difficult, due to the commonly accepted image of torment, i.e. the more exhausted the caregiver is, the greater the admiration and appreciation of the environment – says Ewa Kalińska, a psychologist from the hospice. St. Krzysztof in Warsaw. Sometimes caring for a sick person is emotionally difficult, because cancer occurs when the relatives live in complicated relationships, e.g. the son does not talk to the father, the spouses are in the midst of a crisis.
In a recently published interview, Bartosz Prokopowicz, husband of Magda Prokopowicz, the founder of the “Rak’n Roll” foundation, admitted that their relations deteriorated during the illness. “She appropriated me, Bartek – I build the whole world on you – she said (…) on my own, I was left with nothing, angrily (…) She was closer to cancer than to me. It was for him that she dressed up like that (…) It was painful. I was not aware of that, I did not tell myself to be distant, ”he told Tygodnik Powszechny. After his wife’s death, he went to therapy because he was diagnosed with post-traumatic stress disorder.
It is also not easy for professionals
Oncologists, presidents of foundations, volunteers, all those who work professionally with cancer patients also have moments of difficulty. Among doctors, burnout is common, invisible at first glance. Kapsyda Kobro-Okołowicz resigned from this position after two years of being the president of the “Rak’n Roll” foundation. Reason? The lymphocytic leukemia she had had started again. According to the doctors, the work contributed to her poor research results. – My mission was to actually help sick people. I was always on the alert, still on the phone, she says.
That something was wrong with her, she realized after the last intervention, when she had to inform the family that their loved one was leaving. The patient was hospitalized in the neurosurgery ward for three weeks. When Kobro came to her, it turned out that the doctors did not know what was wrong with the patient. Even though they knew she had breast cancer over a year ago, they did not consult an oncologist about her condition. On behalf of the family, Kobro talked to the attending physicians, asked for consultations, and finally went to the deputy head of the oncology clinic herself to ask for an intervention. The consultation took place. They began to bustle in the ward because they recognized Kobro. Finally, the attending physician invited the patient’s son and Kobro for an interview and informed that the patient had damaged bone marrow after previous radiotherapy and that nothing could be done from the medical point of view. Back in the doctor’s office, Kobro announced that the patient would be consulted with an oncologist from the hospital where the patient had previously received oncological treatment, or that she would be transported to a hospice. But when she saw the sick, transported to a double room and plugged into the equipment that breathed for her, she realized that the woman was in agony. – For the first time, I found myself in a situation where practically nothing could be done. No one on staff notified the family that the woman was dying, it was time to say goodbye. The priest, who had just finished his work, ordered him to come for him. I had to tell my family about what was happening and go through the process of saying goodbye to the sick with them. The woman died about two hours after our conversation with the doctor. After returning home from this intervention, I vomited, I had a high fever, my body refused to obey me – says the former president of the “Rak’n Roll” foundation. Soon she decided to seek help from a psychotherapist who diagnosed her with post-traumatic stress disorder. She decided it was time to rest.
How to come to terms with death
One of the most difficult moments for caregivers of cancer patients is the agreement that their loved ones are approaching the end of their lives. The doctor is the caregiver who informs the first person that nothing can be done. Małgosia Zawidzka admits that the difficult moments, when she really broke up, were when she did not know whether she would spend tomorrow with her husband. – It is difficult to accept this thought – admits Ewa Kalińska. – There is a feeling of helplessness and regret, a sense of guilt that there is nothing we can do. It is traumatic to observe how a loved one becomes weaker day by day, and often in the last terminal phase they stop eating, walking and talking. On online support groups you can read “the worst thing is that you know that you cannot help, that you see your loved one weaken, change physically and mentally”, “my husband has cancer, I think I have cancer, my ovary hurts, my breast hurts, cancer everywhere ”. – In these difficult moments, if we cannot use the help of a specialist, it is good to find someone who is kind and to whom you can tell about your emotions – says Ewa Kalińska. It is also worth considering placing the patient in a hospice. – We still believe that hospices are deathly, and the family making such decisions is doomed to criticism and rhetoric in the style of “he gave his mother to the hospice”. And this is an act of reason and mercy, not an act of “washing your hands.” The first of the conversations I have with my family that decides to take such a step concerns the feeling of guilt – says Ewa Kalińska.
To help guardians
Statistics predict that every fourth Pole will struggle with cancer. More and more people will therefore have to shoulder the care of a seriously ill person. The current health system does not guarantee assistance to such caregivers. There are still too few hospices in Poland that can take over XNUMX/XNUMX care. In some parts of the country, it takes months to be admitted, and the institutions are several dozen kilometers away from home. – Family doctors should be educated so that they can help in difficult moments, especially in the last terminal ones. The doctor, rooted in the rural community, is not always able to deal with cancer patients – says Ewa Kalińska. It happens that the carer must also quit work in order to be able to look after a sick mother or father. – Such a person should receive financial support from the state – believes Ewa Kalińska. There is also a lack of psychologists. There are few people working under the contract with the National Health Fund, and the waiting time for an appointment is long. In small towns there is no chance for such help at all. – They are often simply left alone, so you need to build such a system of help so as not to feel that you are left alone in these difficult moments – says Ewa Kalińska.