One would think I was getting used to it.
Except, this time it’s my Dad.
For the past 6 days my sister, mom and I have been in marathon vigil mode, much the same way we were just over two years ago for my Uncle Geoff.
This time, it was harder...because it was my Dad.
Sequestered in another one bedroom apartment on the opposite coast, we watched days blur into nights out the window.
Inside, excess espresso cups and pastries littered the counter. Knitting projects flopped on the couch. Chord and lyric print-outs of folk songs were strewn about the coffee table. A guitar and ukelele leaned against the wall. Old photo albums were opened to 1978, ‘83, 94. All this intertwined with the elephant in the room.
A man, who was a shadow of himself, lay in a hospital bed in the living room. He had pain and discomfort, and then he had drugs and disorientation, followed by what seemed to be a straight-up coma for days and days.
Oh, the crying. The crying. The tissues. The Costco.
My father suffered. He suffered for a decade with primary progressive multiple sclerosis. He lost his ability to walk and to play the piano, something he lived to do. MS dashed his dreams of a retirement filled with other pastimes too, including carpentry and travel.
Then, there were multiple brain surgeries over the last 6 years from recurring Meningiomas, first benign, then a-typical.
Finally, earlier this year, another diagnosis:
Cancer. Everywhere. Growing fast.
8 months ago, he was given 6 months to live.
“Maybe.” said the doctor. “Without treatment.”
My Dad was a gentle soul. Everyone who met him loved him. He usually remained quiet while the three boisterous other (female) members of the family bantered, argued, and joked but would speak up just to add a punch line that would blow us all out of the water. This isn’t to diminish his temper, which sometimes led him to say inappropriate things at inopportune moments. He once threatened to kill an inept waitress when she continually messed up his order.
He played Chopin with gusto.
He taught me how to be patient in my own piano practice. “One measure at a time. Slowly. Repeat. Keep repeating that measure until you get it. Then, you can move on.” This kept my piano-banging-in-frustration to a minimum.
He started his own business in 1988. He sustained himself and his family on this business until they sold it a couple of months ago.
Over the last decade of his life, he and my mom defied all expectations of anyone in his condition. They traveled their whole lives, they weren’t going to stop until they had to stop.
In the last several years they traveled to China, the Amazon, Ecuador, Mexico, and multiple trips around the U.S. among other places. Their last trip was a riverboat cruise down the Danube, with Chopin concerts aboard.
But, soon enough, it was time to face the figurative music.
This week, I came to New York with my family to celebrate Thanksgiving, as we always do. I knew this would be his last one, and I knew he was getting close to dying, but I had no idea how close.
Some parts happened fast, almost too quickly. On Tuesday night, he was lucid, social, and in relative comfort. Friends visited. Things seemed like they would be okay. We didn’t know that night would be the last time we would hear his voice. Overnight he suddenly started to experience excruciating pain. Enter Morphine and a host of other drugs...
Two nights later, we put a table in the living room next to his hospital bed so we could have this last Thanksgiving with our Dad, even though he was unconscious. The grandchildren were affected, appropriately, by age: The 11 year old sobbed and hugged him tightly, the 8 year old cried and hugged grandma, the 6 year old looked frightened as he stared at the shell of a man he didn’t recognize as his Poppa, and the 4 year old said “You never know, he might get better!”
The rest of the week we did more waiting. We slept like three sausages in a row in my parents’ bed, while my Uncle Fred snored on the couch next to Dad in the living room. We barely showered. I knit a few rows. I got up to get some water and passed his bed, then stopped. I sat with him. I stared at his features. His grey hairs crawling down his bearded neck. His now gaunt and bony cheeks. His ears that looked enormous now that his head had seemingly shrunk. The Hospice book they give the family members says hearing is the last to go. So, I talked to him. I whispered in his ear. I said “I love you,” I said, “Thank you.” I said "I'm sorry, this has happened to you." But I didn’t know if he heard.
Nurses read his vital signs. His blood pressure was lowering. His kidneys were failing. He was retaining fluid. But, his heart kept beating...123 bpm, 136 bpm,118 bpm.
Suddenly, this morning, he opened his eyes. I could see a haziness, but behind it, a clarity. We talked to him. He blinked. I said, “We love you.” He raised his eyebrows in recognition. We cried, both with joy and sadness. We basked in his clearness for an hour or two. We played him more music, and visited with two old friends who came to say goodbye.
Then, he went back into his head, and there he stayed until his last breaths, several hours later.
Right now he is lying still much as he has been, but without the slow labored breathing we’ve seen for the last several days. I touch his shoulder which is cold, and his back which is still warm. I don’t want him to leave, even though I know he’s not here anymore. But, I’m glad for him. As much as it hurts to say goodbye, I know that he is free.
I’m also relieved for my mom, who will finally be free of caring for him, a task that has enveloped her 24/7 for the last several years.
I need to mention something huge. The way to confirm you married the right person is to go through an ordeal like this one with them. Both our spouses took the four children and entertained them for the last week. They fed them, dressed them, and appropriately distracted them. They gave us space, brought us clothes, coffee, and food. They cleaned. They took turns sitting by our sides and made themselves available day and night. This may sound standard, but it was all done with such respect and love, and for that I am so grateful.