Watching a Fading Father
In hindsight, and even at the time, it was not a difficult decision.
My 80-something parents were ill, one with dementia, one with advanced emphysema. They were both still at home, with my mother unable to care for my father and the local fire department making frequent visits to pick Dad up off the floor after he had fallen.
I had lived in China for almost eight years, and it was time to come home and help Mom and Dad at the end of their days. It made a lot of sense to take on this “job” that paid nothing and would not win me any special recognition or awards. The decision made sense to me because I didn’t have a wife or family in Shanghai, so there was nothing to keep me anchored there. Also, I was finishing a great job and trying to determine what was next for me.
I had been president and CEO of the American presence at the Shanghai Expo 2010, the largest world’s fair in history. Having partnered with the bureaucratic U.S. State Department, parried with the byzantine Shanghai city government, managed 68 corporate sponsors and led 500+ staff, I felt I had the experience to handle whatever challenges my parents’ declines brought.
With that said — nothing prepared me for the challenges of the healthcare system that, at best, seems to have a baseline of disdain for the elderly, especially those who are infirm and don’t have much money.
I have experienced a hospital that discharged my father — without a plan being in place for the care of my father. Something that’s actually illegal. I had a doctor lie to me about a legal issue related to my father’s care. I saw a nursing home stop occupational therapy for my Dad…without telling me. All of this challenged my skills, patience and experience and made me ache with anxiety, every night, wondering whether I was doing the right thing. All I wanted to do was make their lives a little better.
My father had frontal lobe dementia that, among other things, reduces cognitive filters. Thus, on almost a daily basis, I was offered up a variety of strange moments. Driving with him one day, he said he needed to tell me something important and then asked: “Are you familiar with the clitoris?” Resisting the urge to drive off the road in embarrassment (!), I assured him I was aware. Not satisfied, he said “OK, well when you get home, please Google it…and then print out what you find.” It made no sense that he was talking to me about this. But it did sort of make sense that he wanted his unmarried son to know, what was to him, important. No filters! I was not offended. In an awkward way, it was sweet.
Perhaps the toughest part of this challenging — unpaid and never-ending job — was watching my father fade away in front of my eyes. One day, it became all about the straw. I had never actually looked closely at a straw but, as my father was staring at his, I joined in. It was a typical, plastic straw jutting out from a cup of apple juice. It seemed to mock my father as he struggled to get his lips around it.
With a concentration I imagine is akin to what scientists use when they manipulate the genome, he willed his hands to bring the cup and straw closer to his lips. My father, who was a high school champion wrestler and boxer, always seemed to me to be the strongest man on the planet. Now he was fighting so hard…just to get a sip of apple juice.
I found myself cheering him on, as this was a brutal struggle. He needed a victory. I needed a victory. And when he managed to get the straw to his mouth and drink some juice, I breathed a sigh of relief. I was so happy, yet I was so sad. But this accomplishment, seemingly small, yet so important, seemed to make sense.
Instead of the Chinese Government, I was now negotiating with the U.S. healthcare system, specifically focused on how we care for the sick and elderly — like my parents — when their lives are close to ending. Instead of speaking to groups about the intricacies of U.S.-China relations, I talked with my Dad about things that probably should have been covered in “the talk” when I was 15. Instead of being happy our Expo efforts won a large industry award and global recognition, I now celebrated a straw hitting its mark.
I made the decision to put my career on hold, and while it was very hard and detrimental to my professional progress, I have absolutely no regrets.
One day I was visiting my Dad at the nursing home and he said to his roommate, “Walter, you have two great sons.” Also struggling with dementia, Walter smiled and with bright eyes asked “What, spare ribs?”
It didn’t make any sense. Then again, I laughed. Somehow, it made perfect sense.
