“Your mother is in A-fib. We can run some tests, but there is a good chance it will result in us having to crack her chest open.”
Not the words you want to hear when you are alone in a hospital in NYC as you watch your mother dying from pancreatic cancer. Not really the words you want to hear, ever.
But the very kind and helpful (yes, I mean this and you will understand why in a moment) young cardiothoracic resident was truly trying to be upfront about our path at that point. Over the course of that day, I had watched my mother slowly drift away. She talked about fish on the ceiling. She leaned over and pinched my nose and said honk. She closed her eyes for the last time. And, then things started to get worse.
I had just sent my dad home. He was at the airport meeting his brother who was flying in from Greece to provide comfort to my dad as he began his transition from husband to widower.
I was all alone. I may as well have been four years old in that moment when the resident broke the news about my mom’s heart. Because I was frozen with fear and had no idea what to do.
“Your mother does not have a positive outcome no matter what happens today – her cancer and complications are very advanced.”
Another gut-wrenching moment.
“So, performing surgery on her heart is not something that will make her better. It will only help with the current matter at hand.”
I am, of course, paraphrasing. But, this is very close to our actual discussion. Well, not really a discussion at that point. I am fairly certain I was just standing there looking at him and the other young resident with complete panic in my eyes.
I remember going into the small meditation room and crying. How could I handle this? I was just a kid. Actually I was just a few days away from turning 40. But in that moment, I was a kid. I was her kid. And her life was in my hands.
I knew the decision was on me. My dad would not make this decision. He could not. When I called him he totally leaned on me.
It seems strange to even call this a decision. There should be a very special and sacred word for this moment. Maybe there is. But it was a moment unlike any other. I was overcome with fear, anxiety, uncertainty, sadness, loss, relief, and then terror.
My mother’s life was literally in my hands. Why? Because even though my mom had stage-4 pancreatic cancer we never had a real and open discussion about her wishes. There were only two conversations I could recall us having about death.
The first was years earlier. She flippantly said, “If there’s ever a chance of me surviving, hook me up to those machines.”
Years passed. And during that time we watched her sister’s beautiful and vibrant life end on “those machines.” It was terrible. We finally brought the family together to turn off that humming beast and, within minutes, my aunt was gone. It was awful, painful, and beautiful all at the same time. She was at peace. I never really understood how death could mean peace, until that moment.
Fast-forward to the night my mother talked to me about her cancer diagnosis. She very matter-of-factly said, “Don’t go getting all upset, people die all the time.” To which I wept in reply, “But not my mommy!”
In that moment, my mom said she thought she might just forego treatment and seek palliative care. I still regret what I said next. “Jack is only two and maybe if you treat the cancer you will still be around to see him in kindergarten, Mom.” So selfish of me. I am sure it was a very human and natural response, but it was wrong.
She pursued chemotherapy and it destroyed her before it could save her. She spent a horrible week in the hospital during which time, I am certain, she hoped her ordeal would end.
But getting back to that moment of decision, I felt like these memories did not provide me with a certain response when the resident asked me what I would like to do. You see, she did not have a living will. There was nothing in writing expressing her wishes. It was all on me.
I will tell you those two wonderful residents held my hand, wiped my tears, and guided me to what I believe was the right decision.
I told them I wanted them to make my mother as comfortable as possible and I would gather the family to surround her with love. They humbly honored my wishes.
Family came and said goodbye. My cousin and I spent that entire night crying, holding her hand, laughing at old episodes of “I Love Lucy” and crying some more. When the day broke we were all there to watch her take her last breath, and mourning began.
For months after my mom’s death there were moments when I was winded by guilt and grief. I would run and run and think about how different it all could have been if we had real and honest discussions about her disease, her fate, her life, and her wishes.
I encourage you to have the conversation. It is not morbid. One of the most caring and loving things you can do is to truly understand and support your loved one’s end of life wishes. Show them you care. Have the conversation.
Visit YourLifeYourWishes.com to learn more.