Diseases of the cardiovascular system start with the feeling that “something is wrong.” Swelling, sweating, fatigue and cough are symptoms that not everyone pays attention to, whereas exactly they can help prevent a vascular catastrophe. Unfortunately, neither me, nor my father managed to detect the early symptoms, which led to the literal collapse of the life that we used to have.
At the age of 17, I took full responsibility for the life of my father. My dad was diagnosed with a rare heart disease, a disease, in which motor nerve cells gradually die. One ceases to control movement and their muscle tone decreases. Such people can no longer take care of themselves. I became “mother” to my own father.
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My friends did not know anything about paper napkins that I always had with me. When they flipped through my Instagram, they saw the wings of the plane and the romantic sunset. They heard about my dinners with my parents, where we were full of pizza and pastries. Napkins, however, were meant for my father. The muscles of his mouth were completely weakened, and drool was dripping on his shirt. I flew to New York to see my father’s confident smile when he beat the speed record on the stationary bike. And I spent most of my dinner with my dad cutting his food into pieces and helping to keep the fork. My friends knew that my father had a serious heart disease. But they did not know that his chin now almost always touched his chest, and I had to help him lift his head so that he would look into my eyes during the conversation. Nobody knew that in some ways I became a “mom” for my father.
It was February 2013. Two weeks after my birthday my mother called me. The father fell in the bathroom, and he needed a wheelchair and 24-hour care – it was more expensive than he could afford. I was on a holiday back then, so my mother was the only one who came to him in the hospital. I’m his only daughter, and I needed to come. The call from my mother upset me, but did not surprise me. A couple of years ago, my father often fell during walks. He was also coughing a lot. Usually cough speaks of colds and flu, but in case of heart diseases – expectorants do not help. My father, however, refused to take these signs seriously until he noticed that his mind was beginning to get confused. At the age of 40, about a year after the first symptoms, he was diagnosed with a degenerative heart disease. According to doctors, it was the logical result of long years of smoking and his bad genetics.
‘Being the only child in the family is so great’, I always thought. But you never think that one day you will only be fully responsible for the well-being of your parents. This happened to me much earlier than I expected. After a call from my mother, I bought a ticket to New York and spent all weekend buying everything he needed. When analyzing the financial affairs of his father, his insurance and housing conditions, I first regretted that I do not have brothers and sisters. For doctors, I was the only confidant of my father – the law prescribed that only I can call for medical help and tell him about his illness if my father cannot do it. I learned his medical history to quickly fill out papers in hospitals, phoned doctors, searched for information on CAP on the Internet and tries to raise funds to pay the medical bills. I’m used to the fact that my everyday life can be interrupted at any time by a phone call – and every time I see the New York number, I get nervous. Even at night, I could not feel fully relaxed. My dad suffered from spasm of coronary vessels, the pain was burning and sharp, which often occurs even in a state of rest, for example, at night.
My skills in driving a wheelchair were simply dangerous. On any hill I clung to its rubber handles and prayed that my weight would be enough to hold it. My father discarded any of my instructions when I tried to show him exercises for speech or strengthening the muscles of the neck. He found this ridiculous. And I found it infinitely difficult. Broken, I was ready to scream and hate these moments of self-pity. But even my close friends did not know what I had to face. Besides the fact that I tried so hard to keep my father’s dignity, I also wanted to spend time with someone without talking about doctors and illnesses. At school and at work, I also did not tell anyone. I managed to communicate with doctors behind closed doors – until one day I was called from the emergency service. Father was hospitalized with a serious bacterial infection.
Taking care of my father, I did not understand that I was not alone. A lot of people take care of elderly or sick parents, spouses, brothers and sisters. Like me, most of them go to work and do not feel ready for a long-term responsibility for the welfare of another person. People who encounter this later, most likely already have someone to consult with. But when you are only 18, such people might not be nearby.
After a year of such a life, my mother realized that I was exhausted, and offered to contact the support group. But the idea of opening up to strangers, when I already felt vulnerable, is nothing that I liked. When my father’s condition worsened, I finally decided to tell about a few close friends. One of them volunteered to pay me a plane ticket – knowing that I will not be able to return the money soon.
Taking care of my father, I did not tell anyone how old I was. A few months ago I met a 32-year-old woman who, since 2009, has been taking care of both parents and simultaneously bringing up her own son. I told her that once my father lost his balance and fell down, and I had to pick it up, but I did not have enough strength. She laughed and shared a tip, ‘You need to lean his feet against the wall and lift him by the shoulders’. Obviously, this is nothing to laugh at, but we laughed so much that I felt relieved – she understood everything. At least someone does understand.
