“He doesn’t look so good,” I say tentatively, always deferential. I had been a caretaker to a sick man long enough to know not to alienate the people you need. “He’s lost a lot of weight, and, well, look at him.” I keep my tone and demeanor as nonthreatening as possible to soften the words. It is a practiced appeal to his ego and compassion.
“Make sure he eats,” he instructs, as if I could. When I bring my father his favorite burger, he takes one bite before complaining that it tastes bad. The same holds true for pizza and ice cream. All the foods he once loved he shoves aside with disgust. “There is something wrong with it,” he says, and I know for sure that something is wrong, but that it is him.
Again, the doctor turns to my father who may or may not be sleeping. It’s not unusual. His nights have been bad, consumed with anxiety, sweats and, sometimes, hallucinations.
“Steve,” he says loudly and my father opens his eyes to the doctor’s wide smiling face. “You make sure you eat, okay?” He wags a finger at him.
My father just stares back. He has no energy. He cannot fight the smile on the man’s face.
“Things are looking good,” the doctor reiterates in farewell, pulling his hand into a fist of power as we slowly make our way out of the office.
Three weeks later, my father is dead.
I wanted to believe
That was over a year ago and I am just now coming to terms with the anger — not just because he died, but because I was encouraged to believe that it wouldn’t happen. No one alerted me to the real possibility that he might not survive. We were running tests and working treatments until what seemed like a minute before someone brought up palliative care and, then boom — hospice.
While most of the doctors were kind and well meaning, what I discovered is that hope can be detrimental when it isn’t tempered with reality. Even though I could clearly see my father was not actually “looking good,” I wanted to believe.
As my father always said, “Hope is a powerful drug.”
Only a few months later, I unfortunately found myself in a similar position. My healthy-as-a-horse father-in-law had just been diagnosed with lung cancer. Weeks before, fit, tan and shirtless, he dominated the paddle ball courts and played Hearts outside in the sun with his friends. He had a light nagging cough and went to the doctor thinking he had bronchitis or some other serious or not so serious, affliction. But no. Cancer. Everywhere.
It seemed the news alone changed him. He dropped weight, had no energy or appetite. Things ominously started tasting funny to him. The fevers began. Yet, there were the enthusiastic doctors complimenting his appearance as he smiled bashfully and straightened up to impress.
“How’s he doing?” my husband asked the doctor.
“Your dad is a strong guy,” he replied. “There are all sorts of things we can do.”
The words worked like helium, filling and lifting the wilted spirits of the entire family. A tornado of tests, scans and treatments ensued, and all the while, my father-in-law weakened. I watched the things that happened to my father near the end happen to him. I could have checked them off like a grocery list. Loss of bladder control. Check. Hallucinations. Check. Drenching sweats. Check. Transfusions. Check.
My father-in-law was 81 years old with metastasized cancer. He was dying, yet no one was brave enough to say so. We never heard, “It’s time to get your affairs in order,” like they do on the medical shows. They never even said, “This is really bad.” They smiled reassuringly and kept us rapt with positivity and hope.
We were told he was strong and might even play paddle ball again.
He passed away two months from his initial diagnosis. A devastating event made even more traumatizing because we were led to believe that he was treatable; that the symptoms he was experiencing were all cancer related but somehow not dying related, and that the two were not one and the same.
We need to talk about death
I was kinder to my father-in-law during those months of his illness and did my best to keep him comfortable. It was the least I could do for such a wonderful man, and I felt lucky to be able to offer that to him. I was patient with him and loving in a way that I hadn’t been with my own father.
With my dad, I didn’t understand how close to death he was. That he wasn’t blowing off his rehab yet again, but that his body truly couldn’t get up. That he didn’t intentionally ask me to bring specific foods only to toss them aside and blame me. His mouth tasted of metal, of sickness, of dying. That when he yelled or refused nursing staff and aides, he was at the time delusional, anxious and paranoid. And afraid.
I now understand why he needed so many Ativan and Xanax for anxiety.
It’s easy to get stuck after years solidifying behavioral patterns. I was the caretaking daughter. He was the self-sabotaging, sick, needy father. I visited daily, advocated on his behalf, brought him treats and necessities, but I did it behind an emotional wall that seemed necessary for my own survival. Had I known our time was ending, I know I would have found a way to open a window to release the frustration and stress. I would have found a door to bring him more kindness, patience and love.
Maybe I’m wrong in thinking the doctors should have given warning, although the few doctors I have since spoken with all have said that it’s better to have the conversation, however difficult. Not to destroy all hope but to help patients and their families understand the reality of their situation so there is time to mentally process.
We are all so afraid of death and talking about death that it has become a taboo subject, which is so bizarre since we are all going to die. Wouldn’t it be better to change the conversation around dying? Maybe if we are willing to accept that fact it will soften the fear and lead to more loving, kind and honest exchanges.
I don’t know, but I do know that losing a loved one is difficult enough. Had I known death was so near, I could have been more prepared and more gentle, but I wasn’t, and now I have to live with that.