Jan C Johnson, Author

Grief Anticipated, Part 2

When I was little, my dad could do anything. Tall, slender, and movie-star handsome, he was also strong and smart. During those golden times when he wasn’t out of town on his railroad work, he came home in the evenings for dinner and teased me about liking only chocolate ice cream. He could pick me up and swing me high so that my feet seemed to touch the stars.

And my mom, though a little pessimistic, was efficient, steady and capable. She is the one who read to me when I was little and later, when I was trying to learn how to write, told me how to spell word after word. She is the one who fixed the meals, kept the books, did the laundry, made grape jelly from the vines on the back fence, and told us, Honest to Pete, don’t run in the house — I have a cake in the oven and it will fall.

Now I am the strong one. I am efficient, steady and capable. I can go get the car from half a block away and be back at the clinic entrance while Mom and Dad are walking the 30 feet from the reception desk out through the automatic doors. At 87, Dad looks just like my great-grandfather did at 95, except that Dad keeps losing weight; Mom cannot keep track of appointments or her checkbook.

When Dad and I had some time alone during one visit, we talked a bit about his cancer. He was unsure of his own medical outcome. I pointed out that none of us knows how long we will live, and told him that I was not worried on that score, as long as he had a Savior. He replied, “I sure do!” He wanted to make sure Mom was taken care of, and I assured him that all three of us kids would help both him and Mom with whatever they needed.

But my next responsibility was tougher than I imagined. Dad slept a lot during the day but kept getting up in the night. Mom would awaken to find him getting dressed “to go take care of something on the railroad.” She could not convince him he had retired years earlier, or persuade him that someone else was on duty to handle the problem. She would call me, and all I could do was remind her to pull the cord to call for a caregiver. Mom was exhausted and under constant worry, afraid to sleep or to let Dad out of her sight for fear he would wander off. It was past time to look into memory care.

The nurse at their apartments recommended a facility right around the corner, convenient for Mom to visit. The two places referred residents to each other all the time, she said, and they would take very good care of Dad. We toured the place, the staff met Dad, and we set a date for him to move in. My husband Brent and I brought him some furniture and things from their house. Martha and I shopped for the few other items he would need, while he and Mom looked over the lease.

Paranoia is one symptom of Alzheimer’s. Dad called me at Target, interrupting our shopping to tell me that the residence contract was “suicide” and that he did not want to sign it. Martha and I should get lawyers to protect ourselves. Panicked, I called the nurse, who reassured me that everything was fine. Martha and I finished our shopping and got back there as fast as we could check out and go.

There was not one thing wrong with that contract.

Who was this sick, confused, helpless old man who had replaced my dad? Still his daughter, I continued to care for this elderly stranger with kindness and affection… but also with a growing detachment. Dad could not possibly be safe outside a secured environment. He needed memory care as much for Mom’s sake as his own. The staff assured me that he would get personal attention and have activities to do. I did not expect him to be happy about it, but placing him here was the only logical thing to do; in fact it was unavoidable.

After the move, Mom got some regular rest and started to feel better, but her forgetfulness and general state of overwhelm remained. I struggled with patience as I encouraged her to put all the bills in one place instead of leaving them lying all around; same with her to-do list, and lists of things she needed from the house.

People at both residences tell me how charming and much-loved my parents are. It pleases me to know that I belong to such a sweet elderly couple.

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.