Wisdom Undone: A Daughter's Battle With Alzheimer's

04/12/2015 10:02 AM IST | Updated 15/07/2016 8:25 AM IST
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alzheimer's, memory loss and senile dementure

Yesterday the Novartis fellow came and delivered the Exelon patches for my father. One patch to be stuck on the side at the back, to be changed every day and put at a separate place the next day, avoiding the spine. Don't put it in the exact same place in a period of seven days, I was told. They cost a few thousand, and my father began arguing we should not spend money on him, he is old anyway. As I told him to keep quiet and it was not his concern, I realised with a jolt that he was suddenly talking not of thousands but of lakhs. "Why must you spend lakhs on me? You have so many expenses, and in the money you are wasting to get my memory back, you could pay off your home loan in four months!" My wise, sharp father. Wisdom undone.

Oh, did I forget to mention my father has Alzheimer's? Well, he does. And the patches are a desperate attempt to get him to hold on to his memory. You see, his memory now is barely a shadow of what it used to be, it's the echo of a whisper. If you make any attempt to examine it for fresh information, it quickly folds under scrutiny.

"You will know it from the stillness in the air in my parents' house. There is no irritating sound of him tinkering around..."

You will know it from the stillness in the air in my parents' house. There is no irritating sound of him tinkering around the house, spreading the innards of a music system on a bed in their small bedroom to repair for the nth time, refusing to send it to the repairman, saving maybe Rs 100. Now there is mostly just the figure of him sitting on the sofa, staring vacantly, he whom one rarely saw without some reading material, he who taught all of us siblings the importance of reading and opened our worlds. No sound of music wafts through -- Tagore songs, Atulproshad, Rajanikanto, Dilip Roy, Uma Basu, Lata or even "Jhumroo" by Kishore, Paul Anka. Always very eclectic.

I can't get him to talk about anything much. I never get to hear him strumming his pointless guitar now. We can't even make small talk about small things any more. He even forgets to wind the cuckoo clock. That, more than anything else, tells me how time has folded in on itself. He was always particular that the clocks in the house should all be working, and working well. It had become a joke amongst us, but at the same time became an imagery of a functioning family. He taught me to carry Tagore, Bibhutibhushon, Maugham, Pearl Buck inside my very being, to make their works my sanctuary. He was the one who taught me pride from correctly identifying a geometric shape at the bottom right corner of a Picasso painting as a cornucopia. But today, when my 16-year-old asks if I have any Gore Vidal books, I ask my father and I draw a blank look. His home seems a place that time forgot. Or wait, maybe it's a timeless place.

Yes, that seems right.

He had a couple of strokes a few years back, but their effects were temporary and he got back his sharpness before we even properly realised it was missing. So he was the keeper of all my important papers, the plumber/electrician/handy-man around my house, putting up the Christmas tree lights, despairing at how I bring his wonderfully alive plants and kill them within a couple of weeks. As a family we have been losing things and spending a lot of time every day racing from one room to another trying to find them, for years now. Looking for spectacles while it's perched atop our head, trying to trace the noise of the cell phone ringing and realising it was ringing from the depths of much ham and sausage in the freezer. So, we thought he just joined the club of dazed, half-aware, mostly comfortably paralytic people -- my mother and myself. This has been our normal for some time now. He had arrived, so to speak, in our august club. But then it became different. He suddenly became a much lesser person -- that is the only term I can think of when I compare him to what he had been -- unable to move forward, not wanting to go backward. All those deafening roars of years past, those stubborn silences, suddenly turned on their heads almost -- becoming an eerie void of agonising silences.

"Why did I not notice earlier how my always well-turned-out father had lost his will to be presentable? Why did I not notice his shoes had scuffs in the bottom?"

He could read for India once, and retain most of it, unlike me. In my effort to get him interested again in reading, anything, I kept buying him books I knew he liked but could not find anywhere around the house. The day I bought him The Razor's Edge he looked at me and I saw the years dissolve around me and felt betrayed by life as he said, "Don't buy them anymore, I can't remember one page from the next." I felt a cold drop in my stomach.

We were advised by the doctor to sort out his papers and finances. My brother, always loath to doing anything which might need his brains at home, reserving it all for his online bridge games, finally sat down and as we opened file after file, we realised we had lived, over the past several months, in a mist of half-shared unreliable perception. What we had understood came warped by a prism of belief and will, which somewhat tilted our memories too. We had gone on seeing and remembering in our own favour and we persuaded ourselves along the way. The files contained abandoned jobs, a signed blank cheque here, a bill there, all tracking a restlessness which we had failed to gauge through our interactions with him.

It felt dirty, pawing through his papers, looking for things which were solely his preserve, as though we were invading his private space. Why did I not notice earlier how my always well-turned-out father had lost his will to be presentable? Why did I not notice his shoes had scuffs in the bottom? My father, who in weird ways believed in non-conformity, who taught us, through his behaviour, that just because we were related to someone did not mean we had to like them. He taught us objectivity, giving us permission to feel what we wanted to and not feel guilty about it, but to keep it all within the bounds of politeness and good breeding. His rules called into question much that was common wisdom at that time. Here's one: you are a girl, and never mind what others even within the larger family say, but you have to have a career. I fumbled long in life. But my father's arms were so elastic they held us siblings and our dreams too. Till so recently, he remembered our numbers before we outsourced our memories to cell phones.

He was sitting right there, so we feigned a lack of surprise. I later found out he does not even think when he is sitting like that, so all our subterfuges were unnecessary. I felt nothing really, no vindication, nor panic nor guilt about all the choices we had made. We just sat there, sans the later additions in the family -- just us four, unmoving, secretly hopeless in shock. There was no tension in the silence at all. As we sat, our silences helped our recovery gather its own quiet strength. I suppose our love for him generated its own reserves. Maybe. We are a useless family when it comes to talking things through. We have always left conflicts to die their own slow but inevitable death.

"Secret-keeping where illness is concerned requires an ability to mask. Not everyone can do that. My mother can. "

Secret-keeping where illness is concerned requires an ability to mask. Not everyone can do that. My mother can. To complicate matters, my mother is very unwell herself. But she does not want people to discuss her illness -- she believes people can be mean-spirited about someone else's catastrophe. And she may be right. She is the one who is left with the detritus of our collective lives. She, the one who hurt the most, spent her life consoling other people for her loss. It's one of those weird things which make zero sense. Her victories in life have been small and her disappointments transient until she was sucker-punched with that most unbearable of blows.

As I watch them, I feel a pervasive sense of helplessness, of danger, of responsibility, a sense of guilt and unreality. It is as though our earth has shifted on its axis and something unfathomable has occurred in the galaxy in which I live. Even as I realise that, I know his confusion must be so much more. It is a whole new world to him -- in an awful, confusing way, he must be in a city where the street signs are missing. The meaninglessness of light has never struck me with so much clarity in a long time. I can handle his physical ailments, it's noticing the void his intellectual space has become which I find difficult to come to grips with.

Why am I writing about him at all? Because writing is how I understand everything that happens.

Writing is the only way I know to move on.

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