At the mere age of thirteen, I heard the word “cancer.” It was like a knife going through my heart when the doctor told me that my grandma had leukemia. From that day forward, I had no idea that I would be taking care of her and what the road ahead meant for me.
It started with going to doctors appointments and researching medications she was on, to the simple task of calling to see how she was doing or whether she needed anything. Little did I know that as time went by, I would have to take on a much bigger role of being an adult, rather than being a teenager, and making life saving decisions. I can recall that the hardest moments of being a caregiver were not being able to participate in activities of the milestones of growing up. There was a constant pressure of taking on such a big role and having to fulfil a role that I never experienced or known of anyone my age that was in a similar situation. I had to constantly juggle my time and energy one hundred percent towards her, while not realizing that I was abandoning my own personal, physical, emotional, and spiritual needs. I didn’t sign up to do this, but I knew I had to because there was no one else and she confided in me.
When she broke her pelvis, I stepped in to help with bathing, toileting, eating, and advocating on her behalf when health care professionals wouldn’t listen. At this point, the caregiving role became more intense. It was a constant battle to be there almost twenty-four seven and managing finishing university as a nurse. Her health was diminishing and it became challenging to navigate where I stood or what my role had to be. I started off with going doctors appointments, and then bathing, and now advocating for her wishes to stay alive when the health care professionals gave me no hope that she would pull through from the complications that had come with the breaking of her pelvis. Each day, I was constantly reminded that she would not make it and that keeping her alive was very hard on her. I couldn’t stand having to hear the word “dying.” It pinched a nerve in my body that I just couldn’t shake. I kept fighting for her to stay alive, but it was extremely hard to stand back and watch the pain she was in. I sat by her side through the whole time she was dying and the role I had was now reversed. I couldn’t do anything I had in the past. I found it very difficult. I felt helpless and I was useless. I tried avenues to help with her care but I wasn’t being heard. It was very frustrating. At times, I felt guilty of my decisions that I had chosen for her, even though that was what she wanted.
Even after she passed away, I didn’t get a break. My mom was diagnosed with stage four lung cancer. Again the awful word, “cancer,” is said, but the most painful aspect is that she is palliative. The options aren’t as black and white and my role as a caregiver is much more complex. There are a lot higher expectations put on me, such as maintaining a job, helping with finances, helping with house work, making sure appointments are all attended, collaborating with many health care team workers, and being able to manipulate my knowledge, as I have a background in health and it is an advantage in navigating the complex resources.
To be honest, the caregiving role I have known is the most difficult thing I’ve ever done or faced in my life. I have had to stand back and watch my friends have a career, become successful, get married, have children, and be financially stable, where I feel like I’m behind. It’s hard to act my age and go out and do things or talk to friends about my situation when I have to become the parent now and reverse the family roles as a caregiver. None of my friends know what it’s like and often times, it becomes upsetting that they can’t relate or be there for me when I need support. Many times I have been frustrated and neglected every aspect of my own life, and felt like giving up. But somehow, I know that there is no other option, because how can I abandon my mother, who is someone I love?
In conclusion, don’t give up because you have no idea how great a person it takes to do something like caregiving for a loved one who is ill. It’s like you have a super power that no one else has. Just remember to always take care of yourself because if you don’t, how can you take care of somebody else?