Moral vs. Ethical vs. Compassionate –
“It’s esophageal cancer,” the doctor informed me in a rather matter-of-fact way. We knew something was terribly wrong, but no one is ever prepared to hear the word cancer. I stood in stunned silence. My knees felt weak. I wanted to scream. I wanted to hit something. This was so unfair after all he had already experienced. He wouldn’t make his 90th birthday. He had three to six months to live. Once again, the pain in my heart – for him – felt heavy.
Due to the size of the tumor and the obstruction it caused, he was unable to eat or keep any food down. I had a decision to make – possibly the most difficult one of my life. He needed a feeding tube or he would die a horrible death. There were no other options. The tumor was untreatable and even if it had been, he was too weak to withstand it. This decision was in my hands. This is when we, who have the Power of Attorney for the Medical Directive wish we didn’t. This is when we want to run away. Never in the most remote part of my brain, did I ever think I would be responsible for making this type of decision. I was literally paralyzed by what was facing me, but more importantly, what was facing him. When faced with these types of decisions we want to abandon ship, but this is when we need the most fortitude.
I had little time to make the decision – about 12 hours. No time to be paralyzed. I did some research but wasn’t satisfied. I learned that feeding tubes are really a moral decision, but I also knew that death by starvation was not an option. I reached out to my support system, but no one could decide for me. Hell, I had to decide for him. I asked for help from his doctors and thankfully, they obliged. We met later that evening and together, we decided that this was the only way to keep him from suffering. As drastic as this was, it was a palliative decision. I was the one to tell him. Once again, praying for strength to do what seemed like the impossible, I found a way; and through all the clutter in my mind; I found some clarity.
I made a clear decision NOT to mention cancer. I could find no point in telling him. He knew something was very wrong. He knew this was not a normal part of aging. He knew, in his own way, that time was not on his side. So why tell him. It was decided that he would be told that he had a massive obstruction and that the only way he would be able to live was with the next procedure. He knew how hard this was for me and helped make the decision easier. When I was explaining what was to come, he took my hand and looked at me once again with those soulful blue eyes of his and he said, “Do it but make it as easy as you can for me.” I assured him that I would. I decided that in these last months, he would get to do whatever he wanted. It was though, without hospice, we gave him his own kind of hospice – WHATEVER HE WANTED became the mantra and NO ONE was to mention – cancer.
For the most part, his days were pretty much the same, except that he napped more often than not. He was ready to leave us long before I was ready to let him go. There was this quiet acceptance about his current state of affairs and it was never spoken of again. That is the way he wanted it.
Making the really tough decisions is part of the caregiving journey. No caregiver is ever spared. Most of us enter into caregiving with little understanding about the decisions we will be asked to make on the part of our loved one. But as we journey through the maze and we discover our inner strength and ultimately our truth, those decisions become a part of us and we are never the same again. As difficult as this was for me, I now walk with less fear of the unknown, because I am always reminded that this journey, my journey, led me to a place of strength, compassion and love. Blessings, indeed.
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