Nearly every night I have variations of the same dream. I’m back in the hospital, in Room 12 of the ICU, watching my father die and being powerless to stop it.
One of my most important roles over the past year and a half was being an advocate for my father. Once during that time I had a nurse take me aside and tell me that I needed to stop researching things on the internet and leave things to the professionals. “He’s weak and frail, honey,” she said with a syrupy southern accent, “so you need to stop it. You are just upsetting yourself.”
“I know that one day I won’t be able to advocate for him. One day he will be too weak and too frail, and there will be nothing I can do to help him. But until that day, I will do whatever I can to get him the care he needs. Now call his doctor and have her look at this!” I responded while handing over an NIH study I had tracked down online that was a verbatim explanation of my father’s condition that the doctor’s had yet to pinpoint. A half hour later his medical team was onboard with what I had discovered and within 48 hours he was home.
Having spent a lot of time around hospitals in the past year and a half I have learned a very important lesson- you have to advocate for your loved ones. If it hadn’t been for me, my mom, or my sister stepping in on multiple occasions, my father’s story would have ended much sooner.
We watched doctors make some pretty bad decisions. We educated ourselves and we intervened whenever necessary. We asked questions, we demanded answers. There were times when we barely stopped doctors and nurses from giving my dad medicine he was allergic to. We pushed for nutrition and hydration as doctors shrugged their shoulders and wrote him off. We didn’t carte blanche accept their explanations just because they had fancy degrees and high paying salaries. We knew my dad. We knew what was normal and what wasn’t. They didn’t. They saw him in a vacuum and treated him accordingly. They didn’t see him.
That may sound unfair. In fact, most of the doctors and nurses that we met were amazing and helpful and kind. But when you have a bad doctor or nurse, the result can be dangerous. We met several callous and unfeeling doctors that nearly cost him his life on multiple occasions- the ones that read the word ‘cancer’ on his chart and never bothered to read further down where it said the cancer was completely under control. Instead they took one look at him and said, “Call hospice.”
So we fought back. We stepped in and protected him, the way he had spent our whole lives protecting us. Because that’s what you do when you love someone.
Deep in my heart I had hoped he would rally. I would have gone on fighting for years to keep him at our side. But he was weary of the battle. His body had gotten too weak and too frail and in the end, I think he was ready.
The night before he passed, my sister and I sat in his room and held his hands. It was the only time during his stay in the ICU that all of his vitals looked perfect. His breathing rate was spot on. His heart rate was where it should be. His blood pressure was steady. As I watched him with his eyes closed I saw the briefest of smiles cross his face. I’m not sure what he was seeing, but I know in that moment he wasn’t afraid. He was ready for Jesus and Jesus was ready for him.
Dear friends, advocate for your loved ones. Don’t assume the doctors know everything. They aren’t looking at the big picture. They don’t know your loved one’s ‘normal.’ Fight for them while you can with everything you have and when they are ready to go, hold their hand and tell them you love them.