When I was 19, my father lay in a hospital dying. My mom, who had spent four years dealing with his health, was not in a position to make health care decisions. So there I was at her side trying making hard adult decisions for the first time in my life. Now, with my brother’s situation, I am dealing with making some really hard decisions because my mom needs me to but I am not sure how well I am holding up.
In the words of my sisters, I am as “tough as nails,” but am I really? I am small ship that stands through a bad storm but it does not mean that I am not damaged or that I am not broken. It means that if I don’t hold it together, no one else will. I help my mom keep it together and I help my siblings because I have learned how to hurt and how to hold on despite the hurt. It is times like this that I remember why I have built an emotional wall around me. I pour myself into my work and finding solutions and pay less to the emotional part of it. To me, there is no time to cry when there is so much to be done. That is what makes me different from my siblings. They feel helpless when things are tough but as helpless as I feel, RA, fibro and life’s hard lessons have taught me that life keeps going even when I don’t want to.
Every aspect of my brother’s illness is stressful including the fact that his doctors tell us they don’t really know how to treat his disease. I feel like by telling him that chemo and surgery would prolong his life by a couple years, they basically told him to give up hope and stop fighting to live. Obviously, I don’t know this for sure and I won’t know for a while because he was put back on the ventilator Friday night because he is still struggling to breathe. The doctors are going to try again to help him start breathing on his own and he is heavily sedated. Anyway, he asked Mom on Friday morning if the doctors were able to remove the cancer and she told him that they did so up until that point, he did not know. I don’t think he even knows that it has been twelve days since the surgery so his question was expected. My mom did not tell him that they were not able to remove all the cancer and our family decided that telling after he was stable was the best option and we have not gotten there yet.
With his not being able to make his own healthcare choices, it falls on my mom which means it falls on me. It is stressful to say the least. I am frustrated with the process, tired, and scared. I talked to the case worker at the hospital about getting a healthcare power of attorney prepared for him to sign when he is alert in case he cannot make his own decisions. We probably should have done that prior to the surgery but no one could have anticipated the length of time towards his recovery from the surgery. I keep asking my siblings if he gave anyone any instructions prior to the surgery and apparently, he did not. He was told he could die and that was the only thing on his mind.
It is sad to see someone who was strong and fearless turn into someone who is weak and vulnerable. It makes me angry at the world but I won’t be mad at God. This is the way life works and no one is immune from these types of situations. I wish I could go to sleep and wake up eight years old when all I worried about was keeping my brothers from breaking my dolls and all they worried about was my catching them trying to break my dolls and beating them up. Being a kid sure beats being a small ship in a storm.