No truer words have been spoken, and although the quotation can be applied to many things, it sure sums up my experience of a caregiver. During my time as a caregiver, there were days, and even weeks where looking back I wonder how I survived, enduring not only the physical demands, but also the emotional demands. All I can say is it happened with the grace of God, a lot of grit and determination, but also love and appreciation from my grandparents, and supportive family and friends.
My journey to the role of caregiver started early, attending doctor visits as my grandparents were concerned that their English was not perfect enough to communicate with or to the doctor. Caregiving for my grandparents started as their drive, taking on the responsibilities of understanding pre and post-procedure instructions, home care, and any follow-up appointments. It also included asking questions, to ensure they were informed of their options and outcomes and that they were getting the best care. They also were assured that they were never alone, no matter what they would have to face. My grandfather, Ota, was my first in-depth experience with the caregiving journey from diagnosis to death, and Oma, my grandmother, was my second. Both had different journeys, somethings were similar, but the hospitals, doctors, diseases were different. So were the challenges, and each change in the disease meant more learning in order to gain a better understanding which made the experience became deeper.
Ota was diagnosed with cancer, a tumor was removed, but unfortunately it became metastasis cancer. All treatment possibilities and combinations were discussed; alternative medicine, alternative practices, calling family members who are doctors in Germany to see if there was treatment options available, and a few friends supporting me along the way. We acquired and searched for information not just from Ota’s team of doctors, oncologists, specialists but my family and I did our own research and debated the options. In the end, we did what mattered the most, we listened to what Ota wanted. It was his life, his choices that mattered, and no one else’s. I shared his decisions and I made sure to advocate on his behalf. He made his choices about how he wished to be treated. He wished to be home and not in a hospital. He wanted to be at home where he was comfortable and peaceful; close to his garden where he wished to die.
I will never forget that first time he got to go home after months in the hospital. After I transferred him into the car from the wheelchair, he sat in the sun-warmed car with his eyes closed, in bliss, letting his body absorb the suns’ rays, and his words: “This is so nice, so very nice!”
As a caregiver, I organized items that were needed. I cared, tended, aided, dressed wounds, and became a hostess. I was confident, I became educated to the best of my knowledge in the disease and the possible complications. I became the problem solver and the fixer. There was always something changing such as medications. As a caregiver, you can’t become complacent because changes keep happening both good and bad and for that reason you have to learn to ride the waves. “A skillful sailor is not one who can ride smooth waters.”
Looking back, I realize I did the best I could, learned all I could to make life easier while honouring their wishes. I learned how super focused one can become; how we lose track of other people and their lives, even what is happening in the world today. I became a mini expert on the health of each grandparent, knowing any data. I learned the rules of ambulatory transfers between adjacent cities, but the ambulatory services were not able to bridge the gaps. I learned which professionals truly cared and went the extra mile for their patients; not all professionals are equal.
With caregiving, I became exposed to the fragility of life. I searched for answers, for reasons that were not to be found as to all the whys, why my grandfather, why he must suffer. I sought answers, solutions, and explanations, I found patience, acceptance; I lived the serenity prayer:
God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
It was not an easy journey, there were many difficult moments, difficult challenges, but there were many rewards, much love, laughter, good memories. I will never say I did not cry, for indeed I did, and I still do, but I also know each step in the journey I walked that I did the best I could. I honoured Ota and Oma. I also gained the extra precious moments with them. I experienced the beauty of love and life on the journey to death, but heck yes, it was worth it!