It has honestly been a rough month here, and I figured writing about it may help so please bear with me, as it is likely to be very stream-of-consciousness. About four-and-a-half years ago my father passed away after a brutal fight with cancer, at the time Mom and I put everything on hold to care for him throughout the pandemic. It was one of the first times as an adult my role had aggressively shifted from patient to caregiver, and with the challenges we are facing now, this shift in roles has started again and I wanted to touch on some of these struggles.
The first one is obvious in thought, but tough in practice, just because you are now a caregiver doesn’t mean your appointments as a patient stop. The reality was I still needed to travel for laser appointments and after these appointments, I could not drive as I struggled to see. My dad could not make the journey, so my mom always had to decide between staying with him or driving me. The reality was I needed the driver, without public transit off the island I live on, I could not reach my appointment and couldn’t get back. So, Mom and I rolled into the car that morning and made it to my appointment and onto the next ferry in record time, only being away from the house for about 15 hours. But the entire time there was a real sense of guilt, a real sense that I wasn’t as good a caregiver to my dad as he had been to me.
This led to the second struggle I had as a caregiver, a sense that I wasn’t as capable of caring for my dad as he had been for me. All my life I had been the one in the family with complex health needs, my mom has never even been in the hospital for herself, only ever for me. It was really easy to try and compare the amount of care they were able to provide to me to how well I was doing for them. It was hard to come to terms with the fact they didn’t have the sheer number of their own medical appointments to juggle or the simple reality that I did not have the same reserves of energy they had at my age. For one of the rare times in my life, I felt my condition was holding me back, and that was a hard truth to realize when all I wanted was to give everything my dad had given me back but felt like I couldn’t measure up. It has taken years and some old therapy techniques to realize that all I could do was my best, and I gave every piece of energy and myself I could to care for Dad, it was not a competition, but a collaboration.
I want to end this to all the patients who have turned caregivers, know that doing your best is enough, you are not being measured by the person you are caring for the way you are measuring yourself. Your selflessness and sacrifice might have to have to look different than someone who is not managing their health problems, but it is no less valued or less valuable.