I originally wrote these blog entries three years ago. Five years ago today, my biological dad died after a six-month bout with lung cancer and a ridiculous amount of other illnesses, complications and discomfort.
Hard to believe it’s been five years.
Part 1 – My (brief) life as a caretaker
My dad was diagnosed late in 2004. Lung cancer. He felt he was up for the fight, and he had a history of overcoming seemingly impossible odds in terms of health challenges. A history:
In the late ’70s, he nearly died from spinal meningitis. He was in the ICU, getting spinal taps, the whole nine yards. Pulled through. In the ’80s he had some bizarre allergic reaction to something and he throat swelled shut. Paramedics did the ol’ tracheotomy in the nick of time. Pulled through. Oh, I forget to mention the broken leg. Three times, the first was the worst, a shattered lower leg. Did I mention the rheumatoid arthritis? He tried some experimental drugs available only in Mexico (No FDA approval). In 1994, a sprained leg (he stepped in a gopher hole probably dug by a Minnesota fan at an Ohio State game in Columbus) led to a massive infection of his bones, osteomyelitis, I believe it was called.
Damn near killed him. They removed an infected clavicle bone. They wanted to amputate his lower right leg but he refused. There remained a quarter-sized wound to the bone for the remainder of his life (another 11 years). But … he pulled through.
But the chemo seemed to be really beating him up. My cousins Tom and Pete Linzell, God bless ‘em, kept an eye on my dad, and I’d drive down to Columbus from Cuyahoga Falls when I could, most weekends.
So I was a long-distance caregiver, my sister in Cleveland and I. One January day Pete called. He was worried. Dad was throwing up a lot, not eating much, had diarrhea (all the usual fun stuff) and was very weak. I knew it would be rough on Dad, but still. Finally he got so weak they took him to the hospital. The first of three trips to three different hospitals and three different rest homes (lovely).
Turns out what was giving him trouble was 1) severe diverticulitis and 2) the intestine had actually formed a fistula with his bladder and two pathways had converged. He was peeing poo!
So he had the dread colostomy. I went to Riverside Hospital for the surgery. It’s funny, the resident (doctor) who first greeted me at Riverside looked like she was 12 years old. Like a female version of Doogie Howser (remember Doogie?). I was tempted to joke with her about that, decided better to not.
All this meant he had to suspend the chemo. The oncologist didn’t sound too concerned. He said the chemo had been effective, that the tumor was shrinking.
Well. Dr. Coonie, dad’s onetime neighbor and longtime doctor, was a tad less sanguine. Basically, he believed it was a matter of months, that the cancer would continue to progress.
Meanwhile my sister and I shared power of attorney, and with our cousins’ indispensable help managed to keep the bills paid and other crapola taken care of. Oh, and we moved the (now dead) car, (really, more of a heap — a decrepit old Bronco II). Dad groused about us having “dropped the ball” on that, which annoyed the living hell out of my sister and brother-in-law (Dad had a knack for annoying the living hell out of his family).
Meanwhile, his house was threatening to slide into the ravine. This house had been in Dad’s family (did I mention my mom and dad divorced when I was, like, 6? Another blog. Or 20) for 30-plus years: It was my grandparents’ retirement home (after vacating a gargantuan 3-story behemoth that could have been – and temporarily was, much to my grandparents’ chagrin – a fraternity house), then my cousins lived there for a few years, then dad bought it from the estate. I’m sure he got a friendly family/inheritance discount. But it was built on a fairly steep hill of mostly shale, which any geologist will tell you is not a good idea. The stuff is hardly a solid bedrock. So the basement walls and foundation were basically 4 inches off the footers and buckling. When it rained, a river ran through it. Literally. There was about a half-inch trail of mud leading from the (buckling) wall to a drain.
So while dealing with what indeed was a terminal illness, my sister and I had the conflicting emotions going all the way back to the divorce, when dad basically bailed out on us, now we’re trying to care for him, feeling a bit of resentment and the ensuing guilt about being (secretly) resentful, trying to maintain focus at work and take care of the wife and kids, racking up the miles on my car shuttling back and forth to Columbus.
I have to say, one January morning afforded me a sight I’ve never seen before. The sun was just coming up and there was a thick, icy fog surrounding me as I drove on I-76 toward I-71. The bare tree branches glistened in a rich coat of frost, which stood out in relief from the softer white frozen sky. Then I noticed a slight blue tint to the white sky, that pale white blue, and then suddenly it popped bright, bold sky blue. I wish I’d had a camera. It was quite impressive. Words don’t do it justice.
There was another time I took the kids to see “Papa Willie” and about a fourth of the way down, a snowstorm hit. I counted 18 cars skidded off the road (including four or five idiots who shot right by me as the snow fell harder and harder).
Anyway, the colostomy was just the start. Then there was the pericarditis, an inflammation of that membrane that surrounds the heart (oh, he had had a heart attack a year prior to the cancer diagnosis — I tell ya, the guy was tough!). There were the usual and sundry cases of pneumonia, the unappetizing and usually cold food. The endless line of doctors, nurses, aides, social workers, insurance forms, demented roommates at the nursing home (the first one). And then the big one.
I called Dad on either a Sunday or Monday. I think it was Sunday. Usually he sounded alert on the phone, eager to get the hell out of that place, whichever one it was. This was his third nursing home. This time, though, he seemed a bit out of it. Even slurring his speech a bit, it seemed. I thought maybe he was just tired, or some medication had knocked him woozy.
That Monday, my sister Yvonne called. She asked if “Willie” sounded different on the phone. I confirmed. She said something about talking to the doctors tomorrow.
Well, tomorrow started with a phone call from the nursing home. He was found “unresponsive” in his bed, only 10 minutes after being checked on, they said. They repeated that he seemed fine only a few minutes earlier. What do you mean by unresponsive, I asked. Cops call every passed out drunk they haul in “unresponsive.” He had stopped breathing, she said (sounding a tad incredulous, and I feeling a vague sense of wanting to slap her). A staffer started CPR immediately, she said.
I paged my sister at Shaker Heights High School where she taught (now on maternity leave). And down to Columbus we went, living wills and powers of attorney documents in hand.
Part 2 – Beautiful Day
It started out a beautiful day. A Tuesday, I believe. It was March 2005, and an unusually bright and warm day. Dad was getting sprung from the Arbors in Columbus (it might be Upper Arlington – whatever), some two months after his surgery. He was feeling better, a little stronger, and getting accustomed to the ostomy. A doctor had visited him the day before, I believe, and cleared him for discharge.
The U2 song “Beautiful Day” kept rattling through my head as I pulled my car up doorside. I had e-mailed my extended family circle to tell them that today was “Free Willie” day. “Willie” was dad’s nickname from waaaaay back.
We got home, then faced the chore of climbing the stairs from the (caving-in) garage to the first floor. Dad was still pretty weak and told me to grab his belt to help lift him up the stair. (Remember he had a bad leg before all this, which made matters worse.) I went out and bought a few groceries. Some bread, milk, OJ, stuff like that. It wasn’t much, but he didn’t need much. At 72, and with all that stuff going on, he didn’t have much appetite. He weighed about 130 pounds, down from 180.
He felt chilly, which I thought was just the house being a little cool. We’d kept the heat at a minimum while dad was convalescing. He was thrilled to be out of the nursing facility, but I had an uneasy feeling about leaving him alone as weak as he was. But I had my job to do (one that no longer exists) the next day. I made sure a nurse was stopping by in the morning to check on him, so that helped a little.
The next morning the nurse called. He had been up all night, struggling with a ruptured colostomy bag (probably from the belt) and he was going to the hospital with pneumonia.
I felt awful.
One long week
Dad was in a coma-like condition in ICU at Mount Carmel West. Nobody knew exactly what had happened. I suspected a stroke. He was on a ventilator, with that rhythmic hissing and clicking ever present. His hands were strapped to the bed rail. He had no apparent control over his movement, and the hospital staff tied his hands so he wouldn’t pull the ventilator or one of the multitude of wires and needles stuck to him. It was not a pleasant sight.
My sister seemed to think he recognized my voice and calmed down when I was in the room.
The doctors wanted to give him some time to see if he’d stabilize or regain consciousness. I was doubtful, and his living will loomed in my mind. This was precisely the kind of thing he didn’t want.
Several days later I brought my wife and kids down. DeAnne and Matt didn’t say much — Matt never handled stuff like that well and it creeped him out. Lindsey, all of 6 then, spoke eloquently for all of us: “Papa Willie,” she said, “We love you. It’s OK if you want to die. We understand.”
Well, you’d have needed a forklift to pick my jaw off the ground.
We went back home, told everyone of the most recent events, then stepped into the daily routine of calling the hospital to get an update. Usually it was nothing new. They tried to wean him from the respirator, but he couldn’t sustain it. One of the nurses thought she saw his eyes following her, but others believed he was blind. A week later the hospital called. They wanted to meet with us the next morning.
I pretty well knew what that meant.
So my sister Yvonne and I drove down to Columbus the next morning. It was May 4, 2005.
A couple of nurses took us into a room; I believe it was the chaplain’s office, but that part is fuzzy. They had concluded that there was very little likelihood that he would recover, and that the cancer had spread. It was a matter of days or weeks at most. We all agreed it was time to remove the life support.
Next we went into his ICU room. On the odd chance he might understand what was going on, I told him what the hospital planned to do. I asked him if that’s what he wanted.
What happened next amazed me.
He nodded. Twice. Emphatically, with all the might he could muster.
“That was a nod!” I blurted.
My sister agreed that was indeed a nod.
They say hearing is the last sense people lose as they’re dying. I suppose it’s true.
We bade farewells, the staff came in and removed the ventilator, and he took his last gasps. We untied his hands and held them. One of the monitors started squawking and, irritated, I shut the thing off. It was of no use now.
Fifteen minutes later, he was gone.