My caregiving journey began when I was 17 and my mother’s diabetes progressed to her needing frequent dialysis. As my mom is a single mother, my younger sister and I were her primary caregivers when she got sick. There are frequent ups and downs with her health while she waits for a kidney transplant. I, like many others in similar situations was not equip for the role but thought I could handle it on my own.
Caregiving is not only physical work, but there are real mental and emotional aspects to it. There were no other adults around us to help care for my mom. I would take her to all of her appointments and also sit alone in the waiting room during her surgeries. I developed anxiety during this time due to the emotional pressure of caring for her. I remember several occasions when she was carried on a stretcher into an ambulance or being wheeled into the operating room telling me that she didn’t want to die. That was a heavy weight on my mind that never left. I will never forget the fear in my mom’s voice when she called me in panic that she was going to lose her leg due to an infection caused by her diagnosis.
During this time, my sister and I were completely overwhelmed by caregiving for my mother while I was in university and my sister was in high school. I started feeling guilty in wanting to continue my life like going away for university and getting engaged. As a teenager, you have so much faith that your parents have it all figured out and are making the right choices, but this isn’t always the case when they are sick.
There was never any advocacy for me as a caregiver from the social worker. We did not receive any help until my sister had a breakdown in high school that her teachers recognized the problem and put us in contact with a PSW organization. We got limited PSW care because the LHIN informed us that they were short on available PSWs.
The need for PSWs was overwhelmingly high in the area, but there were not enough PSWs to meet the demand. My mom accepted the limited care we got and was happy to finally get help from professionals. What we did not realize was that because we lived with our mother, they would prohibit how much care she could get.
It wasn’t until I reached my breaking point that I understood how hard it was caring alone. That is why I got involved with the Young Caregivers Association. They were a great help working through some of the emotions I was feeling. I now live with my fiancé and I’m a disability case worker. I love helping people and my lived experiences gives me a deeper level of understanding and empathy as I have navigated the system myself. I sometimes still feel guilty for continuing my life and moving out with my fiancé, but I try to remind myself that my life does not stop because my loved one is ill.
Prior to moving out I broke down on the phone with the LHIN telling them that we desperately needed more support as there wasn’t enough PSW care at the home. I understood how bad the situation was after looking in the mirror one day and no longer being able to recognize myself because I was so drained. We have had to hire some private PSW care to provide adequate care, but this is causing my mom financial stress on top of her physical state.
I advise others to do their own research about services available. There are many out there, but I find it is always on us to go out and look for the resources we need. I also would like to tell caregivers, especially young caregivers, to never stop advocating and to be included in talks about your loved one’s care. You are part of the care team too and your concerns should be heard.