We allowed our father to pass with as much dignity as is possible under the relentless assault of advancing dementia. There was no debate over whether to stop the clock and restore what was possible. He would be allowed to complete his journey on his terms. We had no choice but to come to grips with the nature of death and dementia. The vibrant, charismatic, funny dad in words and actions would not return.
That is not to say there were no debates over ongoing palliative care. I remember being selfish and demanding over medication that could prolong alertness. That was not about comfort and quality of life. It was about me. There was an uptick, but it did not last long. It was as the doctors and the hospice care team told us it would be, a gradual roller-coaster downward. A series of plateaus and declines until there was only deterioration.
I, however, became obsessed with each stage of the process. I googled mottling of the skin and learned that it is generally a sign of impending death. I asked about it each time I visited. I wanted to see the mottling. I wanted to know at what point swallowing became impossible. There would no longer be food. No intravenous feeding. Only morphine. The caregivers assured me that the body also compensates. It produces its own form of opiates. There is no pain.
I sat and watch the morphine drip as the wasting process continued with the lack of food. The dad of my past now relegated to memory. The man I loved in the bed, features unrecognizable. I researched and researched as if that somehow, would give me the ability to turn back the clock. I would be the expert, not the doctors and nurses. The Dunning-Kruger Effect borne of not wanting to let go.
If successful in my search, he would once again be sitting with us at dinner. Coaching me in little league and teaching me to drive in Schenley Park. There were so many times I wanted to scream to the nurses what I had learned an tell them what we should do differently to prolong his life. Life?
How should I define that? His chest moved up and down. His heart pumped blood. He sporadically blurted out names from the past. He spoke with his deceased brother and parents. He was alive as science defines it.
For the most part, it was tears and quiet. The smell of the various liquids and lotions used to ease the transition. Kisses on the forehead. Whispering in his ear. Letting him know that his greatest fear in death would not be true in life. His sons would continue to love and take care of each other. We would also take care of the people he loved.
In the end, that was his concern. All he wanted was to know was that the people he loved would be ok without him. He did not want science to prolong the inevitable. We knew that. He did not have to tell us.
Each morning his vitals declined a bit. When I left for a July business trip, I knew that any day could be the last. I walked out of my door, crossed the street, over to his place. I again sat in the chair. I asked if this would be the day. The caregiver told me he was stable. My sister-in-law and her sister came by. I rested my head on his shoulder. I whispered that it was ok to let go. We would take care of each other. He had done a great job with his sons. I got up to leave, and to my surprise, he said,
“Where are you going, stay longer”.
I didn’t remember the last time he spoke that much to me. I said, “just stretching dad”. I sat back down and held his hand. I got up to leave again. He said, “I love you, Brian.” I can only speculate that he knew the end was imminent, mustering up every ounce of strength to vocalize his love. For me, those last words will always be the voice of the dad telling me to hold the steering wheel with both hands.
I went on my business trip. He hung on. The next Wednesday, early afternoon, I got the text from my brother. “It’s happening Brian, get over here”. I got dressed and ran faster than my artificial hip had ever permitted. I burst through the front door. He was gone. We hugged. We cried. I kissed him on the forehead one last time. I spoke in his ear one last time. It was not a pretty death. It was not a movie. It was brutal to watch and be a part of. Our love of our father demanded that we do so. It was not about us.
This coming week, the entire extended family will get together for the first time since his passing for the “unveiling,” as is the Jewish tradition. We will not talk about the awfulness of dementia. We will talk about the laugh. The charisma. The driving lessons. We will recite my dad’s favorite saying when he picked up the check for every single meal or pushed casino chips over to me when I went bust at the blackjack table.
“Wait Until You Get My Bill”
Dementia is ugly. We dealt with it the best we could. We allowed our dad to live his final months on his terms. That is what he wanted. That was his bill to us. We paid it the only way we would, with love. Always love.
I love you, Dad.