
On our refrigerator is the same photo of my dad and me that accompanies this blog post. It was taken on Christmas day and was the last time he went outside. Marla, my dad’s Certified Nurses Assistant and now our dear friend, took the photo and we have it displayed in a prominent place so we can look at it whenever we want to.
This morning I was trying to find the inspiration to write and couldn’t find it until I looked at the photo. What always strikes me when I look at it is the look of complete vulnerability on my dad’s face. If you knew him you could also see, maybe it comes across even if you don’t, that he is not happy. He has a grimace on his face and because I knew him so well, I believe he felt confused and possibly annoyed that we got him up and dressed and out to the front porch. It was a bit cool and we dressed him in one of his very old cashmere golfing sweaters with a t-shirt underneath. We wanted to make sure he didn’t get cold because of his lack of body fat to insulate him. He is looking at me intently and I don’t remember what I was saying to him. We are making eye contact and because of his delicate state, I believe there is trust in the way he is looking at me and the way he is holding tightly to my hand. By this time, three weeks before his death, he barely had any vocabulary left in him. He was increasingly non-verbal as the dementia claimed more of his brain.
Though I doubt it is a conscious decision, a person in my father’s condition is forced to turn over their independence to their caretakers. It happens in stages as they lose control over every aspect of their lives. I become my father’s voice. I was his advocate. Because I was his nurse, my family supported me in taking on this role. My mother and sisters were incredibly supportive in the decisions we made to discontinue all non-palliative medications and to not force him to eat when it became clear he no longer wanted to. We were a team joined in the common goals of making my father as comfortable as possible and having his passing be peaceful and surrounded by his loved ones.
I was my father’s voice. As the weeks passed he became more and more like an infant. He could not talk or walk or take care of himself. Though there were many difficult moments with my father’s combativeness and my reactions to those moments, it was imperative that I respect how I knew my father wanted his last months to look like. I had to put aside all control of how I thought things should be and instead do what I knew in my heart he would want done. My awareness of how my father wanted the end of his life to look like was something intuited from conversations I’d had with him through the years. I had a deep understanding of how he felt about prolonging a life that was trying to leave. We knew but failed to remember he had a living will so we didn’t think to look for it. We found it after he passed away when my sister Jody was going through a small strong box of his papers. His living will spelled out exactly what we had intuitively done for him. He wanted no heroics of any kind. He asked that food and water not be forced when it was clear that death was imminent. He asked that all medications, except those for comfort, be discontinued. He asked that he be allowed to die with dignity and the living will, in it’s beautiful, poetic form, gave us permission to let him go, asked us to let him go. He wanted this and we followed his wishes exactly, never having read the living will. To love and respect someone is to honor their wishes in spite of what we think is right for them. There cannot possibly be anything more beautiful than carrying out the dying wishes of someone you love. The ultimate act of kindness and love is to step aside and allow this voiceless soul their final choice. This is the greatest gift you can give and you will never do anything more honorable. Nothing. Period.
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