"Why did you mention it in the Acknowledgements segment of your first novel?"
"Are you okay talking about it?"
These are just a couple of the questions my friends and readers have asked me regarding "it." No, it's not a cocaine addiction. "It" is my father's Alzheimer's condition and I do not feel the need to hide it. Frankly, I'd like to talk about everything in my life. The great and small mistakes I made, the occasions when I have been a momentous jerk etc. The only facts I still won't put out in the open are those impacting other people - people who don't want those facts known.
Anyway, back to my father's Alzheimer's. It is a rather challenging disease. For the patient. And also for the caregivers. As a secondary caregiver, I'd like to chronicle my journey so far in an attempt to record what my father, and his disease, have taught me about life.
In some ways, the outlook of my family changed the day he was diagnosed with the disease back in 2005. Our initial response was to get frustrated with my father's changing personality. Gone was the man with immense concern for his family. Gone was his ready wit and ultra-confident personality. One by one, the traits that made him an admirable man went missing. What seemed to remain were his weaknesses, now amplified by the disease.
The clouds thicken, a silver lining is born
At this juncture, my personal life crumbled around me. I felt lost, hopeless. There were moments when I resented not only my father's disease but also him. He was supposed to be my pillar of strength. Instead, he was somebody who could not even comprehend what was happening to me. I tried telling him about my pain and, in response, received a vacuous stare and sadly-twirled lips. I could barely prevent myself from howling my agony from the rooftops.
Of course, my mother was available for solace and support. But I decided that she was already dealing with too much. So I wore a mask of bravery and went about my life. My pretend-confidence rubbed off on my mother to some extent. Right there, I learnt two crucial lessons:
1) When I act like a brave person, I inspire bravery and also inch closer towards actually being brave &
2) When in a crisis, I must look within for strength. The external world can, at best, support this pursuit of strength.
The third lesson was less evident at that moment. Like any rebellious son, I had carried an array of grudges against my father. The pattern broke a couple of years before the disease struck him, when we managed to have a heart-to-heart chat about our differences. During this conversation, he acknowledged his many failings as a father and also explained the rationale behind some of his past decisions. I felt lighter at the end of that chat. Being a loving father, he did not fling counter-accusations at me. He just told me that he was proud of everything I had achieved.
And now, as the disease was claiming his brain, I felt infinitely grateful for the conversation that happened before it was too late. So my third lesson was this: the best time to bury the hatchet is NOW.
Is acceptance possible?
Meanwhile, my father's amplified weaknesses were grating against my nerves. His smoking, for instance. Doctors suggested rationing the number of cigarettes we gave him - so we began giving him a cigarette at specific times during the day. We hoped this would make him healthier and less susceptible to cardiovascular problems. The move backfired. To satisfy his cravings, my father took to picking up nearly-smoked butts off the road and deriving pleasure from the one or two puffs still left in each butt. When the local shopkeeper reported this development to us, our knee-jerk reaction was to worry about our social image. When that concern subsided, we worried about him picking up an infection. We wanted to do something about that. We removed the cigarette embargo, but that didn't curb his newly-acquired habit. So we reimposed the embargo and my mother tried to accompany him on his evening walks. Easier said than done. He still walked at a Gandhian pace, whereas my mother couldn't. 'I'll do the needful,' I told her. One evening, I accompanied him, huffing and puffing to keep up with him, feeling proud that he was still so fit. It was during this walk that my father's condition taught me my next lesson:
'How ridiculous am I being?' I thought. 'What am I trying to control here? The will of another human being? And why? Okay, let's assume the worst happens and he contracts an infection. We'll take care of him. I don't want to live within this hypothetical fear.' With that, I turned and returned home.
I didn't realize it yet, but I was beginning to accept my father for who he was, thereby acquiring the strength to accept who he will soon become. In the longer run, this translated into an acceptance of others for who they were. I'm not talking about resignation or a passive acceptance. I'm talking about proactive acceptance, one of the keys to harmonic relationships. I wonder if I'd have learnt this lesson in a less confronting context.
Again, the best time is NOW
Around this time, my mother had her own epiphany:
'The doctors say he will not be fit for travel soon. In that case, I want to have my fill of traveling right now.'
So off she went. During the next few months, she visited relatives in faraway places, attended every family function and also embarked on a pilgrimage that took her to UP, Bihar and Nepal. My father accompanied her throughout. It wasn't easy, but my mother managed those trips stoically.
Through this process, my mother learnt not to postpone cherished goals. The best time to accomplish them was NOW. Thanks to her, I too learnt the same lesson.
Fears are teachers
By now, my father's mental health was deteriorating at an alarming pace. He was forgetting a million nouns and verbs each passing day. He still enjoyed recounting the few episodes of his past that he still remembered, but his narration was getting less coherent and more hurried.
On the plus side, he was self-censoring his walks. During the initial phase of the diagnosis, he used to travel at least 5km away from home. Each day, he would take a different route, certain of making his way back. As time passed, he reduced the distance he traveled from home. A little later, he took to walking only along the most familiar route. By mid-2008, he had decided not to venture any farther than the neighbourhood park. When we realized that he was making these adjustments himself, we felt relieved. What amazed me, however, is that he never stopped going out on walks.
Through his behaviour, he taught me to learn from my fears without succumbing to them altogether. Later, as I studied the art of counseling and better understood the role emotions play in our lives, it was easy for me to look at every emotion as a potential teacher. What were my emotions telling me about myself? What could I learn from them? Nowadays, I ask myself this question each passing day.
Inspiration was always at hand
Today, my mother inspires me. That wasn't always the case. There was a time when I thought that she was an unadventurous, timid woman; a person filled of regrets. Despite being an ace student, she was not allowed to pursue higher studies and she blamed her family for that. This tendency to blame, I felt, was a recurring aspect of her personality.
Little did I know that she was just waiting for an opportunity to expand as a human being and show the world what a glorious person she really is.
That opportunity was provided by my father's condition. Like me, she was shocked by the diagnosis. But she recovered quicker than me and began expanding her capacities. She asked me to research on the disease so that she could be mentally prepared for the future. The internet held horror stories for us, but she chose not to be horrified.
'I will not send him to a Home,' she declared with finality. I bowed down to her decision. After all, she was the primary caregiver. Therefore, I experienced only a fraction of the distress she did. If she could cope with my father's disease, so could I.
Five years after the diagnosis, she took a radical decision.
'I'm relocating to our hometown with your father. You need to rebuild your life and you can't do that if you have one eye on your father and me at all times.'
I was touched. Since I was dealing with this reality at home, I had almost ostracized myself from society. I didn't socialize too much. Didn't go out on dates. Didn't explore any future options. I was frustrated, and feeling resentful towards my father. Those resentments were eerily similar to the ones I felt as a teenager. What surprised me, however, was that my mother understood my mixed feelings without any explicit communication.
'Just find a suitable place of residence for your father in our hometown,' she said. 'I'll take care of the rest.'
Three years after this move, my mother has delivered on her promise. She rediscovered the joy of belonging to a familiar culture and setting whereas my father has taken to the semi-rural surroundings like a duck to water. As his behaviour becomes more challenging, she is rising to the challenge. I visit them as much as I can and use many tricks to determine if my mother is secretly bitter. I haven't found any trace of that yet. All I unearth is an amazingly inspiring woman who still sees a husband in my father. 'What trouble can your father give me? Look at him. Like a blessed child. I am perfectly happy.'
Without my mother's largesse and inner growth, I certainly wouldn't have achieved the breakthroughs I did in the past three years. I have used the time to explore more and come to embrace my life.
And all this happened because I was born to the most amazing woman in the world. Would I have realized this truth were it not for my father's condition?
Love is the unconquerable emotion
Last month, my cousin lost his father. He's more a brother than a cousin. His parents live a stone's throw away from mine. So when I traveled with him for the funeral, I also was being asked by circumstances to look at my father anew. How would I feel if he died?
Before getting to that question, there were practical considerations to be addressed. Right now, my father can't distinguish between a funeral and a movie premiere. He was bound to behave inappropriately and perhaps sneak out, making us chase after him. Since my mother and I were responsible for important chores, there was no option but to keep my father locked at home. Ergo, I met him late on the night I reached my hometown. Many outstation guests had come for the sombre event and some of them would be staying at our place. As is natural with an Alzheimer's patient, this development disturbed my father. Shaken out of his placid routine and unable to accept the ambiguity of the situation, he behaved like one would expect him to behave. How did I respond? I lost my temper. Although I knew that he would not understand a word of my reprimand, I reprimanded him nonetheless. Selfishly, I was expunging my own emotions, no matter what.
Here's where my father reiterated his most important lesson. I had been exposed to this lesson before, but never so powerfully.
You see, Alzheimer's patients do not remember what happened ten minutes ago. They have this enviable gift of burying the past, as if it didn't happen at all. So, two days after my reprimand, after the heat of the situation had abated, as I was taking leave of my parents, my mother hugged me tight, wept a bit, and applied vibhuti on my forehead. My father's reaction to this show of affection:
'Good! Very good!'
Pointing to the vibhuti, indicating that it wasn't prominent enough, he went to the kitchen, got some more and applied it with fervour.
'Good! Very good!' he repeated.
I hugged him with all my might. He responded to my embrace. In that precious moment, I got my father back in my life. Fully. Wholly. Not just as a notion or theory. In that moment, he was my caring father again. Was he waiting for this unadulterated embrace all these years? His face showed no resentment, no regrets. It was radiant with joy.
In that same moment, I realized two important lessons:
1) I had never lost my father in the first place &
2) Love is the only universal emotion. Because innocent children and innocent Alzheimer's victims understand only love.
