I remember walking into my father’s room one evening and seeing that it was almost dark. Baba looked up at me from his recliner and using the wooden ruler in his hand, he gestured toward the ground where the TV controller had fallen off the desk. Due to his spondylitis and Parkinson’s, he didn’t have the flexibility to reach down on his own and he had been desperately trying to nudge it within his grasp with the ruler. His voice reduced by this stage of the disease to a whisper had not been audible to me, assuming he had called earlier. I felt bad for not having noticed it was getting dark. I quickly turned on the lights, adjusted his position on the chair to be more comfortable, closed the curtains, and picked up the remote control.
“Do you want to watch the news?” I asked. He slightly leaned his head to indicate that would be fine. I don’t know whether he found the news as boring as I did or simply something to distract his mind.
Anyone who has been in a hospital bed after an operation knows what it feels like to be dependent on others. Even during a brief visit, the feeling is exasperating. Having to wait. Feeling uncomfortable or in pain. For my father, this was every day. Month after month.
I was never sure whether he could recall during these final years being a senior manager in charge of an office or being the life of the party at home when he and my mother would entertain so many guests. I am sure at some level he must have remembered. But even without comparing with his former commanding self, the lack of control over his situation must have been frustrating if not depressing.
“Can I get you anything?” He motioned toward the tissues. At times, I would get annoyed at his constant need for tissues which would sometimes pile up after use on the floor beside him. I reluctantly gave him another and noted he already had one in his pocket.
The tissues, I later realized, were one of the few things he could control. If it were left close to his grasp, here was one thing he could choose when to use. There was no gap between wanting it and getting it. No waiting around for someone to help.
This might seem like a very small thing but for Baba the big things of life seemed no longer on his mind. The little things like the tissues, the TV controller, the need for a toothpick were the moments that mattered now. Though he seemed unfocused much of the time, yet I could see he was very alert too. One day, helping him with the walker from his room to the dining table in the kitchen, he looked at the floor and stopped. His back was stooped over due to his rigid spine, so he naturally looked at the ground and had to make an effort to glance up toward where we were going.
Noticing him slow down, I said, “What’s wrong?” I looked down to see a tiny spider. I myself am irrationally afraid of spiders so I instinctively stepped back, took stock of its motion and then stepped on it without mercy. I used a tissue to put it in the trash, and we resumed our trek to the kitchen. Baba’s eyesight and attention were still clear. I can’t recall if he had a phobia for spiders like me but he didn’t seem to show it. I never knew Baba to be afraid of much of anything whether silly things like bugs or the big things like starting a major engineering project at work, or taking on the challenging task of planning a community event for five thousand people. He just didn’t scare easily. His self-confidence was absolute it seemed to me. If he had misgivings about anything, he certainly kept it inside.
“Tomorrow we are going on a little trip,” I said, trying to sound upbeat. “Time to see Doctor Aki. It will be fun…” Getting Baba into and out of a car was not an easy feat and I was not looking forward to the process especially given the additional worry of exposure during the pandemic. There were any number of mishaps that could occur going to and from such a routine outing. He could suddenly need to go to the bathroom; this was one of the big worries in this stage. I had carefully arranged the visit to fit between work meetings but an unexpected delay due to some complication would mean cancelling my work meeting and blowing the illusion of steadfastly working from home without personal interruptions.
The next day was bright and sunny and I had no reason to expect any problems. My dad’s day was going smoothly according to mom. All the usual routines for bath, breakfast, room to room transfer and lunch were moving along as planned. I showed up after 2:00pm, and took him to the toilet and got him into outside clothes. Getting his socks and shoes on was a rare task. I noticed his toenails were getting long and made a mental note to request the morning caregiver to trim.
We reached the doctor’s office and per the new protocol, called from the car and waited for the signal to go in. After having our temperatures checked and answering the usual screening questions, I pushed his wheelchair through the mostly empty offices to one of the exam rooms. A nurse busied herself with items for the procedure to clean a cyst that had formed on his thigh. In addition to being afraid of spiders, I am squeamish about injuries and could feel my father’s discomfort almost as if it were my skin the doctor was piercing with the scalpel. I hugged dad and talked to him about our plans later in the day.
The procedure was thankfully brief and I looked away as the nurse disposed of the blood soaked gauze. I asked the doctor about wound care. He said just leave the bandage on for a day, and cleanse the wound after 24 hours. He said he could send a wound specialist to our house.
“Is it hurting?” I asked my father. He said with a hoarse whisper, “It’s ok!” He was never one to complain about aches and pains. Arthritis had caused him to walk with a cane for a year when he was only in his early thirties. He had a gallstone once that brought him to tears. Baba was familiar with pain and unafraid of it.
I half-lifted him into the car, trying to avoid the bandaged area on his thigh. Soon we were driving home – ahead of schedule. I was feeling relieved. I did not realize then that a little thing would be magnified into a bigger thing that evening.
After reaching home and carefully helping dad cross the raised threshold into the house, I realized this was a good time to preemptively take him to the toilet. That way, once I got him settled on the couch, he could relax for a while. Transferring from the walker to the bathroom involved a dance. We would get to the middle of the bathroom, and then he would reach for the wall-mounted handle while I twirled the walker out of the way, and finally guided him to a seat on the toilet.
As I got him to the midway position, I froze. Hanging on the side of the toilet was a spider. My nemesis looked large in my eyes though any rational observer would call it tiny and harmless. I was holding Baba with one hand and steadying the walker with the other. This was going to require an extra dance move. Not part of our normal routine.
I said to dad, “Hold the post with both hands. Don’t move.” I temporarily overcame my fear as a protective feeling came over me. I didn’t want the dangerous creature harming my father. I grabbed a tissue intending to lean down, capture it, and with one swift move drop it in the toilet and flush it away.
Baba was half-leaning forward and gripping the wall post as I reached for a tissue on the counter. I grabbed at the dangling spider with the tissue, and I think it’s at this point Baba realized why I had asked him to stand still.
What happened after that I cannot clearly recall. Suddenly everything was in motion. The walker flew away, Baba twirled around and slammed with his stiff back into the wall, the plastic trash can slid to the other side of the bathroom, and Baba landed with a crash on the ground but still gripping the post with his right hand.
“Oh no!” I shouted as I heard my mom shouting from the other end of the house, “What happened?”
Without conscious thought, I reached down, and I don’t know how or why, I grabbed Baba around the chest and lifted him to a standing position. That was probably the dumbest thing I could have done medically. What if he had broken something; I would have dislocated it.
I was holding Baba in a big bear hug. Because I am almost a foot taller and because he was stooped forward by his spine, this was an awkward position. But I couldn’t let go. I was chagrined that he had fallen “on my watch”. I was always so mindful of every step and procedure.
“Is anything hurting?” I asked as I steadied him and myself. “I’m sorry, Baba.”
I slowly walked and half-carried him to his recliner and sat him gently down. I examined him. Then I noticed that both of his shins were chafed and his right leg was bleeding from a slight cut. I felt terrible. I had “broken” Baba. “Is it hurting?” I asked again. He nodded, No.
I wiped the blood. Noticing how dry his legs were, I reached for the hand lotion. I massaged both legs from the knees down to his toes with lotion. I could sense from touching the injuries they were just scrapes and did not “feel” painful to me. I sighed and looked at him. He said, “Thank you” for the massage. Due to his vocal condition, multiple words were rare, so I appreciated his forcing out two syllables – Thank You.
Baba’s friends have described him as friendly but firm. That’s also how I remember him in his younger days. He was charming and engaged people in robust conversation. However, sometimes he might abruptly end discussion with a “No” or with a definite “Here’s what we’re going to do.” In these moments, the smart thing was to prepare to comply. He expected people to do what was expected and not require being thanked for it. So when he said Thank You to me in this late stage of life, reduced to the helplessness of a baby, I felt guilty and sad. It’s nothing really. I wish I could alleviate your suffering, but I can’t. Nor can even the doctors.
“Sorry I let you fall,” I said, rubbing his soft, knobby hands.
His expression was generally neutral due to Parkinson’s but he smiled slightly. “Tissue?”
Of course! Take the whole box, I wanted to say. I placed the box next to him and pulled out a tissue for him.
“Let me make you a nice cup of tea. How about some butter cookies? … You’re sure nothing is hurt?”
“It’s ok!” he rasped. I held his hand a moment longer before going to the kitchen.