I have been my mother’s primary caregiver since I was 11 years old – caregiving is all I know. As I got older, my mother’s sickness progressed and so did my roles; from chores in the house and attending her appointments, to cooking, cleaning, and driving, to giving my mother heparin injections and being her power of attorney.
The most difficult time in my caregiving experience was my mother’s second double lung transplant. No stranger to the OR room, I knew the level of risk a second double lung transplant had. Although we had been waiting 2.5 years for a chance for this surgery, I found myself paralyzed by the fear that the moments before the surgery could be our last. The surgery lasted over 3 times longer than the first transplant, the recovery lasted 4 times longer, and the subsequent rehab was emotionally and physically draining.
But the loneliness was the worst part. This responsibility and anxiety of my mother being constantly admitted into the hospital took its toll on me. I would frequently return from the hospital or school to an empty home where my thoughts and anxieties would consume me. When I was younger, I didn’t have the support I desperately needed. I would lash out at other students and teachers because I felt alone, exhausted, and angry. I wasn’t angry at my mother, rather, I was angry at the situation. I would constantly ask myself “why me?”.
Once I started my professional career as a personal support worker and continued to care for my mother, I realized too late that I stretched myself too thin for too long. The burnout I experienced became so severe. I neglected my body, gaining 100 pounds, and struggled with severe depression throughout it all. I had to take a break from my profession and make a change. You cannot pour from an empty cup, and I was running on empty for way too long. I realized how important selfcare is and started doing things for myself, like eating better and exercising.
The journey was everything but easy, but it made me resilient. From life support scares, 4 calls for new lungs that in the end couldn’t be used, many surgeries, 2 double lung transplants, sepsis, to long roads of recovery…you almost don’t know how you get through it, but you do. If I can provide some wisdom it is to fill your toolbox with as many resources as you can. There are many resources out there that can help you. Build a support system and find other caregivers that share and understand your experience.
I now know the answer to the question I have been asking myself all these years. Why me? Because I took my experiences and channeled it into helping others in similar situations. I am now a Personal Support Worker, own my own business, and a strong advocate for family caregivers.
There are so many places my caregiving journey has led me to. If I weren’t a caregiver I would not be where I am today, and I wouldn’t change it one bit.