A short conversation with Mom last week in the car recounted events from seven years ago. Seems to me that we have this conversation every year*, and it doesn’t change. Just like the events from April, 2002 aren’t going to change either. In the end – just as we did seven years ago – we agree to disagree.
Dad didn’t die of colon cancer. It was multiple organ failure, compounded by sepsis. Started with a botched lithotripsy for kidney stones in January. He experienced excessive bleeding, and a massive urinary tract infection – missed by the urologist who performed a cursory and dismissive follow up.
Dad became weak, and fell, tearing his Achilles tendon. This landed him in the hospital, and then a rehab facility where he was stuck on his back for a month. During this time – after a direct accusation of malpractice from one daisyfae – the urologist got off his ass and prescribed antibiotics for the infection.
While Dad was flat on his back doing some rehab three times a day, a fluid-convention began in his lungs. Then, after perhaps too many days of Keflex, he developed a serious bacterial infection. But by then, he’d been admitted to the hospital to deal with the fluid in the lungs. i noticed one day an unusual red “biohazard” sign on his door. Off to the nurses station. We learned that the bacterial infection was pretty damn serious, and we probably should have been scrubbing in and out of the room… Nice of them to inform us.
Dad was augering in pretty quick. The doctors recommended thoracentisis, a palliative treatment to fuse the lining of the lung and prevent further fluid accumulation. The last conversation i had with my Dad alone was the night before the procedure. He was lucid and clear-headed when the thoracic surgeon came by late in the evening. After the doctor left, Dad said “I’m tired”. i knew what he meant… His wishes had been consistent. No heroic measures. He didn’t want to linger. He didn’t want to suffer. His living will said “do it!”
After the procedure the next day, Dad never fully regained consciousness. In and out of a semi-comatose state in the Intensive Care Unit. We took shifts – Mom in the morning, me in the afternoon, and my sister, S, or niece, DQ, in the evening. The doctors wouldn’t offer advice, nor could they predict the future – “we’ve adjusted his fluids” or “his kidneys are shutting down”. They only stated facts.
i grilled them daily: “His organs are failing. Is this reversible?” “Have you ever seen recovery from a similar state?” “Have you exhausted all options?”. They clearly hated these questions. Mom was dead set against hospice care**. We had to aggressively seek pain management. He’d be tossing and tugging with discomfort and we’d run for a nurse to jack up the morphine.
After four days of this, Mom still hadn’t signed a “do not resusitate” (DNR) order. This meant that if Dad went into cardiac arrest, they’d have to slap the paddles on him, burning his chest. My niece and i had tried to bring Mom to the logical conclusion. That night as my niece and i sat with Dad in ICU, he showed up one more time. He opened his eyes, pulled at the restraints. Looking first at me, then her – unable to speak because of the tubes – he shook his head “no”. Unmistakable direction. He tired, closed his eyes, but was still thrashing in the bed.
We got the nurse, she upped the morphine, and he went back to sleep. It was 11:00 pm when we got to Mom’s and told her to sign the fucking DNR. She did the next day. He was still on full life support. And could linger a very long time in that state… The doctors said “we’ve done all we can do”, and when pressed by aggressive questioning “he is suffering multiple, and irreversible, multiple organ failure”.
It was another five fucking days before Mom made the call to stop life support. The rest of us told her that we were comfortable with the decision, but she waited. Knowing his wishes. Understanding the medical situation. Waited. For what? i’ll never understand.
So we went through it all again in the car last Sunday. She thinks we did it too early. i think we could have done it sooner. And we disagree***. Same conversation, same time next year… My personal “Groundhog Day“.
* It may be part and parcel of a ‘standard’ grieving process to go over the events leading up to the death of a loved one. Mom starts this in January every year, recounting each section of track being laid as Dad rode the “Gonna Be Dead Soon” Train. i listen. i encourage her to talk. It doesn’t make him less dead, but maybe somehow it makes her feel better…
** It was a Catholic hospital. i found out much later that one of the nurses had told Mom that if you go to hospice, you have to sign over all of your assets, including your house. Seriously. She wouldn’t even let me look into it. Dad had wanted to die at home, and because Mom had misinformation lodged in her head, we weren’t able to follow leads to make that happen… i’d like a few minutes alone with that nurse… and maybe a sock full of quarters.
*** Mom’s desire is to hang on a long time. She and Dad saw this very differently. She is terrified of being let go too soon… Which has led to some funny moments along the way.