My father use to quote the song sung by Ella Fitzgerald Summertime from Porgy and Bess saying, “Summer time and living is easy.”
Well, that’s not been my summer. It’s been busy, stressful and less than fun. “Easy” isn’t the word I’m using.
A few weeks ago I got the call that my older brother, Billy, was taken to the hospital and that started a chain of events that still isn’t fully resolved. The diagnosis is not unexpected for a 73 year old. He had pneumonia and a stroke. Now he’s in “rehab” – the modern name for conversant hospital. He also has cerebral palsy which just makes treating him that little bit more complicated.
Somewhere along the line I went from younger brother to care giver to case manager to “health care agent” as defined in his Advanced Directive. In these days of HIPAA closing off family’s access to information on a hospitalized patient, this magic document actually requires the medical staff to call me and keep me informed. It also becomes one of those burdens I’d rather not have.
The normal first conversation with a doctor after you inform them of an Advanced Directive generally starts with the question, “Is he full code?”
It’s at that point when part of my mind detaches from my mouth and I hear myself saying, “For now, but under the terms of his advanced directive these are the conditions when I am asked to give a DNR order …”
“Full code” as in do everything to keep him alive. “DNR” as in do not resuscitate and let him die. It seemed like a good idea at the time Bill and I signed the document that I should make that choice for him when he can’t. Seemed so simple nine years ago.
Simple like those days when we were boys. Bill could walk then and had a train set and a slot car set in the garage. He was a teen, I was in grade school. I was small and could help him get wires and track setup where he couldn’t reach. We’d spend hours on summer days listening to AM radio and 60’s rock. He’d rebuild the train’s engines and I’d climb out to the middle of the plywood table to set up more track. The trains would run too fast and derail. The little slot cars would go flying around the track and sometimes into a wall. We’d laugh and have simple fun.
I remember the red three wheeled bike he rode. He’d ride to the hobby shop to get parts or the hardware store for tools while me and the other kids on the street would follow along. Sometimes we bought model cars to build or would stop by the five and dime for a candy bar.
Those were good times and living was fun and easy.
This summer is not easy. Last week I was standing over his hospital bed when he smiled and I saw that missing tooth. A tooth he lost as a teen while riding his bike and pulling neighborhood kids on skateboards. The game was you’d get on your skateboard then hold on to the basket of Billy’s three wheeler and he’d race down the sidewalk as fast as he could pedal. At the corner he’d turn right and you’d let go just before the turn and fly off the curb and into the street.
It was great fun, but as every mother said in the sixties, “It’s all fun and games until someone loses an eye.” In Bill’s case our mother would it change to: “loses a tooth.”
There was that one run when Billy missed his turn and his bike flipped over. I didn’t see what happened but I was the one sent running to get mom. I brought his bike home and could see through the kitchen window that mother was cleaning blood off his face. Mom told me to stay outside. The next day the dentist was able to put the tooth back and for many years it stayed in. A couple of decades later another dentist had to remove the tooth and he’s had a gap ever since.
These last couple of weeks I’ve spent a lot of time on the road driving to and from San Jose and sitting in hotel rooms waiting for a doctor to call. Part of me remembers those carefree days, while another part waits for more information to make another decision I don’t want to.
This week I’ll make the trip again to his bedside. I’ll talk to doctors, nurses, case managers and social workers and this time I hope to be able to say to him, “Dude, it’s summer time and the living is easy. Let’s get you home.”