Now more than 3 years past our caregiving journey, this study provided me with vivid memories of conversations with my partner, his physicians and our care team as his esophageal cancer progress, especially during the last 6 months of his life. I can certainly understand the added stress and burden for caregivers in regards to a patient self-image. Coming home from work, only to see the stepladder sitting in the middle of the kitchen, has always been my stark reminder of how the two of us perceived his abilities to live an independent life. The stress I felt during my caregiving experience was not so much what I saw, it was what I was not able to see when I was not at home. This is precisely the paradox that caregivers face on a daily basis. We can't be there 24/7 and even if we could, and try as we might, we can't do everything for the person who is receiving care. Caregivers have the most information about the person who they are caring for which is wealth of information for doctors and nurses. When we transfer information to our medical care team is when we are at our best; when we worry about things out of our control, is when burden increases. One of the most important, and hardest things I learned while being a family caregiver was that I was not the one who was sick. I was not the one going through radiation and chemotherapy, I was not the one taking the medications at night! I was the co-pilot, trying my best to provide him with as much comfort and care as he needed to deal with this insidious disease. Sure, I still worried when I was not at home, yet when I accepted that I was the co-pilot and not the pilot, that allowed me to accept the reality of what we were facing, together which allowed us to have better conversations about the meaning of independence and his care as our caregiving journey continued until its end.
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