Grief Anticipated, Part 1

The diagnosis came by telephone while our whole family was eating Christmas Eve dinner. A tumor had wrapped around my dad’s esophagus, pushing it partly closed at one point. That explained why Dad had been having trouble swallowing; he had thought he was just eating too fast. He would turn 87 in about three weeks.

Thus began the series of 55-mile trips between my parents’ home and the clinic in a bigger city. Dad would have more diagnostic procedures and, we hoped, a simple endoscopic surgery to get rid of the tumor. I drove them for most of the procedures and helped Mom get Dad home, often under the lingering effects of anesthesia. Dad would hallucinate, talking to people who were not really there or searching the floor for some object he had not really dropped.

“It’s the anesthesia,” I assured Mom.

“But he has spells like that other times, too,” she said. Well, that didn’t sound good. I knew that his driving had become increasingly scary and that he had trouble remembering many of the words he wanted to use.

Then in the spring came the really bad news: the tumor was inoperable and the cancer had spread. Radiation and/or chemotherapy would buy Dad some time; say, around a year compared to the four to six months he might have without treatment. Characteristically, Dad showed a philosophical attitude: “I’ve already lived longer than most people do.” And characteristically, he wanted to fight the cancer. He told the oncologist, “Give it everything you’ve got. You just never know.” The endoscopy doctor placed a stent, to hold Dad’s esophagus open and allow him to swallow food. It would make things much easier – at least, until the tumor outgrew the length of the stent.

My brother David lives out of state and is seldom free to travel to Texas. It frustrates him to be mostly limited to phone and email consultations. My sister Martha and I live near enough to our parents that we can offer more hands-on support. Despite our being so scattered, I told her that I felt as if our whole family were sitting on the railroad tracks watching a train approach, and there was nothing we could do about it. She understood. “At least we’re all sitting there together,” she said.

Dad had one more procedure, to insert a PICC line (“port,” to me) in his upper arm for his injections. He was to have one all-day-long chemotherapy treatment, then receive an infusion pump to give him automatic hourly doses for the rest of the week. He would wear the pump in a fanny pack, turn it in on Friday, have weekends off, then get the refilled pump each Monday. At the same time, he would have radiation treatments five days a week for about seven weeks. My parents were barely ambulatory; no way could they make the trek every day. We researched assisted-living apartments near the hospital for them. They moved into one the first weekend of March, and Dad started treatment the following Monday.

It did not go well.

Away from his own home and his routine of doing very little besides watching CNN, he showed severe disorientation and only the most fragile grip on reality. He griped at the nurses during most of his six-hour chemotherapy treatment. He could not tolerate the tubing draped over him, convinced that it was “fishing equipment” rather than medical equipment. The nurses had no idea what they were doing, he said, and kept trying to leave. They were no doubt relieved when it was time to send him home. That night he kept messing with his infusion pump despite Mom’s warnings to leave it alone. Finally he got the scissors and cut the tubing away from the port. He later told me it was fishing line, and that he had a fishhook stuck in his arm. Each hour a dose of who-knew-what would pump out of the machine and all over Dad, or wherever cut the end of the tubing happened to be. Mom was beside herself. So was the caregiver who called me at 10:30 that night. Mom ended up calling an ambulance to take her and Dad to the emergency room, and had to get a taxi back to their apartment. The change of scenery and routine had revealed Dad’s “forgetfulness” as full-blown dementia.

And yet, often Dad is perfectly lucid. Days after the infusion pump incident, he knew that he had been hallucinating. He could remember thinking that he was supposed to take that machine off and mail it to someone. But when he is in the grip of one of those “spells,” reality can’t get anywhere near him. The dementia makes him fight the treatment rather than the disease.

Is this Alzheimer’s? Maybe; it doesn’t really matter. Whatever it is, it’s got my dad.