Caregiver is a word I really never thought about or even used in my daily vocabulary before TJ’s diagnosis. Suddenly, in the blink of an eye, I became a caregiver. I was thrust into the role of scheduling doctor appointments, taking notes when the doctors spoke, administering medication on schedule and noting side effects. Being a caregiver to someone with a serious illness is so much more than making lunch and handing out pills. You become that person’s emotional support as well as the brunt of their emotional outbursts. The responsibilities at times seemed endless and it is mentally and physically exhausting.
Many do not have a chance to prepare for the role of caregiver. I did not get to read and study up on TJ’s diagnosis. I had to learn as we went along. The pressure was on me to ask all the right questions, to choose the treatment path and hardest of all…to be positive. TJ’s emotions were in overdrive because of the steroids, mine were in overdrive because of the fear of losing him. He was able to act out while I had to put on a happy face and tell him it was OK. I had to sound truthful when telling him he looked good. I had to hide and find a little bit of time to myself to cry without him seeing me. While he saw the beauty in every sunset we watched those last few months together, I saw it as a countdown to not having him to watch a sunset with. Yes, we joyfully counted down chemo sessions and had some laughs with the nurses and others in the chemo room, but it was all too bittersweet. I felt as though time was slipping through my fingers and there was nothing I could do about it.
Often times the caregiver is the unsung hero in the battle against cancer. During TJ’s illness many people inquired about how he was doing, both physically and mentally, but they often did not ask about my wellbeing. At the time my focus was on TJ too and I never thought anything of it, but looking back I realize how hard it was on me also. Cancer takes its toll on not only the patient but family members and friends as well. When someone beats cancer they are called a “survivor” and yes, they truly are, but so are those close family members and friends that supported and helped them through their battle. I know the patient/survivor realizes the role the caregiver and others played in their battle, but the outsider is completely unaware that it takes a whole battalion to make one survivor.
In the instances where the cancer patient does not survive there are very few who even stop to think that the caregiver is left feeling distraught and wondering if he/she did all they could. I talk with many widows, some of whom are cancer widows and many suffer from guilt that stems from the care giving process. There is an overwhelming sense of relief that it is over, which produces guilt, but at the same time many feel guilty for cross words that were spoken during an illness. As a caregiver for a loved one you do things for that person that are only spoken of in private with others who have “been there” too. A caregiver rarely complains about their role, even in the worst of times, but it is a role that stays in the mind of that person for eternity.
Being TJ’s caregiver was the hardest thing I have ever done in my life. I also feel honored and privileged to have been able to help him when he was most vulnerable. It was our love for each other that became our weapon against cancer. TJ thanked me many times for sticking by him and caring for him. We lived life as full as we could those last few months and enjoyed every minute of our time together. We both knew time was limited and we were determined to express our love unconditionally during the time we had left. No, I did not choose to be a caregiver, but I am grateful for the experience and the opportunity. It strengthened me and taught me compassion. I learned to simplify my life. It taught me to appreciate the simple things, the moments that may not have meant anything before. Most importantly, I learned that through nearly 16 years of ups and downs in our relationship TJ & I loved each other very, very much.
One day out of the blue TJ said to me, “Thank You”. I said, “For what?” He then said words I will never forget, “Because of you I have known what it is like to be truly loved.”
To care for the ill without prejudice you must forget who you are, listen to those lying before you in sorrow, and think, “I can be of help”. ~ Unknown