Facebook Badge

Showing posts with label alzheimer's. Show all posts
Showing posts with label alzheimer's. Show all posts

Monday, September 22, 2008

The Acrid Stench of Death

Grief Eases, the Smell Lingers

On September 21, my mother would have turned 86. She died five months ago. But lest anyone thinks this another obituary, I want to make it perfectly clear that it is not. Rather I want to talk about the phenomenon of death and how it hits you in the face, even while you are busy making a life.

To begin with, there’s no escaping it. We are all on some supernatural death row from the minute we are born. Certainly, we give our lives meaning. We do amazing things: we build nations, machines, welfare systems, philanthropic organizations; we do astounding research in medicine, physics, chemistry; we sing songs, play guitar and make it snappy; we write symphonies and operas, novels, poetry, even columns like this one. It is our only shot at immortality. Buried, burned or otherwise disposed off, our mortal coil is just that: mortal. Remember the root of the word is Latin for death.

It’s not my intent to be a Woody Allen and obsess about death. We don’t need that because the fear of death is programmed into our DNA. We eat healthy, we work out; we give up cigarettes, booze and the libertine lifestyle. All in the hope we get a few years more on this planet. That desire drives people who live in sylvan estates or in deplorable slums; the investment banker who lives on 95 and Fifth in Manhattan as well the tribal in basic Africa; the person on a luxury yacht in the Mediterranean as well the illegal immigrant stowing away on a cargo ship.

Nobody told me that death is the only certainty in life for all the years I spent in respectable educational institutions. In school, there was an unstated belief in God that the Jesuits pushed; university life was girded by the Calvinist ethic of hard work, burning the midnight oil. After that, the job was the Holy Grail. You must find one, keep one and rise in the ranks. Better homes, nicer cars, club memberships, business class travel and various other diversions take your mind off from the inevitability of death.

So we build the tangled web of ambition and relationships. It diverts our minds, stuck as we are on this wonderful death row that we call life. I have a sunny disposition like Louis Armstrong, who in 1967 sang What a Wonderful World, a song that was written for him by the legendary jazz impresario Bob Thiele. Its opening lyrics went like this:

I see trees of green, red roses too
See them bloom for me and you
And I think to myself what a wonderful world
I see skies of blue, and clouds of white
The bright blessed day, the dark sacred night
And I think to myself what a wonderful world

We enjoy this world: springtime in Chicago, autumn in New England, a night in Manhattan, a drive on Pacific Coast Highway from San Francisco to Los Angeles, (corny though it sounds) an evening in Paris, a drive through the English and French countryside, a Beatles number, an Ellington tune or some good old Hindi songs by Rafi, Kishore, Mukesh or Geeta Dutt; even more mundane experiences like a drink at the retro bar in the air force station in Ayanagar on the Delhi-Gurgaon border, dinner with friends in Bandra, a singsong at our house, a great movie, a good concert, an absorbing play, a stirring opera. And for many of us, the satisfaction of work and the concomitant rewards, both spiritual and material.

My personal preference remains Goa in the Monsoon. There are trees of green and flowers too. But the skies are grey; the clouds are black and ominous; the night is indeed sacred and dark with sheets of rain and gale force winds. Contemplating the violence of nature, I am reminded that we are mortals and we can be swept away by the sinister forces of nature.

These experiences define our lives. Otherwise there is a void, a few lonely years in a death watch cell. We seek love and solace. When we get that, we are immortal; others want more and they are Shakespeare, Blake, DaVinci, Einstein, Gaugin, Van Gogh, Mozart, Beethoven, Edison, Burke, Jefferson, Voltaire, Freud, Marx, Gates or any of the IT pioneers. People like them advance civilization. The rest of us just enjoy the fruits of their genius.

In the end, there is no greater comfort and joy than sharing a daily dinner table, a weekend lunch in the garden or Christmas with the family. These experiences run for a good 50 years or so in an individual’s life until the children, both us and ours, grow up and move away, sometimes physically but always emotionally. We enjoy it while we can and then contemplate the sunset years. Some of us are lucky to have friends to brighten up our evenings and weekends; and work to keep us busy through the day.

Into this cocoon of happiness that we build and protect, sometimes the reality of life creeps in. This happened when my mother died and left my father with us, Alzheimer’s and all. The grief has eased but I cannot get rid of the stench of death in my house. It is an acrid smell that no amount of Lysol, scented candles and room sprays can get rid off. It hangs in there, dismal and irreversible: a sinister prospect of death. My father, who shared his birthday with my mother, turned 89 on September 21. In his dementia, I can hear the ticking of the mortal clock.

Thursday, August 21, 2008

The Karmayogi Hall of Fame

An Obituary for My Mother

It is four months to the day my mother died. I miss her comforting presence. What strikes me is life goes on as if nothing happened. Hello World, I often say to myself, my Mom’s gone; show a little concern, some respect, and some grief. Relentlessly though, things grind on and she is consigned to be a fading memory in the minds of those who knew and loved her. How easily we are reconciled to the passing of a loved one!

My Mom was difficult to love; she had a way with guilt. Whenever she came with my Dad to visit us in Chicago or in Delhi, she always made me feel I did not spend enough time with her. In some way, her complaint was legitimate because we lead busy lives: long hours at work, many social engagements and many friends to visit and to entertain. I refused to take her guilt trip, which made her angry. Within days of landing in our house, she would start up about going back to her home in Ahmedabad. My Dad was always the fall guy, coming into my study with wads of banknotes, asking me to book their tickets back.

Four months ago, when she died holding hands with me, I felt bereft. I didn’t cry or anything but just felt a deep gash in my heart. For some reason, we believe mothers are immortal and they will always be there to remind you of your checkered youth and then, after they have layered you with guilt, to comfort you. When you come to think of it, they are immortal because everyday of your life something happens to remind you of your mother. In many ways, grief is important; it helps you come to terms with the loss.

My problem is my 88-year old Dad, who suffers from Alzheimer’s. A few days after my Mom’s death, he came to me, looking distraught. “You know, I feel helpless. My mother just died and I did not have enough money to give her the best medical care,” he said to me. It is true that his mother also died of cancer in 1966 and he may have felt as an upright government official that he could not provide the care she needed. I was devastated. I realized then that the major outlet of my grief, to share the loss with my father, was denied to me.

Sadly thus, my grief has remained bottled up in some obscure corner of my mind. I could become a psycho like Anthony Perkins in the Hitchcock movie of the same name and end up as a mass murderer or a suicide bomber. No, let me hasten to add, it’s not about to happen. The point is it’s important to express grief and while I have a hugely supportive family, I have no way to commiserate with my Dad. As such, we are the principals and yet we can’t share the emotions of the loss.

Apart from the dementia, my Dad is a fairly healthy fellow with no aches and pains and a zest for life. When he turned 75, he told my daughters he still had at least 25 years to go. Amazingly, he’s more than half the way there. He just needs 12 more for his century. Even today, in a state of dementia, he tells us he did well at school, was highly respected in his job and exercised relentlessly, so there’s no reason why he should not live to be a hundred.

Though it is difficult to get through to his Alzheimer’s blocked mind, I can say with pride and confidence that he is the progenitor of my sunny worldview. Many friends say that I am wildly optimistic in a righteous sort of way. I consider it a compliment and have only now learned to attribute it to my father. His memory is compromised but he has the heart and soul of a 40-year old; he frequently says that. And he will live to be a hundred or even more.

He now lives with us. He is doubly troubled: dementia as well as a the dysfunction of a displaced person. We brought him with my mother from their home in Ahmedabad in March this year. My mother died and he has no way to go back to his comfortable life in the house he's lived in since the 1960s. He is unsettled and still lives out of a suitcase. We just have to deal with it and can only hope he stays independently fit.

I’ve never been big on yoga and Hinduism. But if ever there was a Karmayogi contest, please welcome my Dad to the Hall of Fame.

copyright rajiv desai 2008

Saturday, May 3, 2008

Pater Noster

Coping with Alzheimer’s

It’s been less than a fortnight since my mother died. In the interim, my 87-year old father has spent an unsettled time. In the pink of health, he nevertheless suffers from Alzheimer’s disease. His brain cannot deal with current affairs and causes him to go rambling into the past. He remembers things from the 1950s and 1960s and earlier but when it comes to the present, he is all at sea.

For partly selfish reasons, we brought him to our house in Goa against the advice of a psychiatrist. We had things to do and we needed to escape from the aura of death in our Delhi home. One airplane trip, a tour of the house and fruit-filled garden, a simple home-cooked meal, an ice cream on Baga beach and my dad seemed to perk up. He was excited by the old-style doors and windows and the antique furniture in our house; he marveled at the wells, the trees laden with guava, chickoo, mango and coconut…drinking it all in, wonderstruck.

“Very nice…just like the old days,” he kept repeating. He was struck by the waves breaking on the beach, the lights, and the music. “This is wonderful,” he said over and over again as we finally dragged ourselves away from St Anthony’s Bar and Restaurant at 10 pm. I was beside myself with joy. In the days after my mother’s death, he had drifted, anchorless without his constant companion; like Keats' knight: “alone and palely loitering.”

Now that he lives with us, I think we can light up his life with experiences he has never had in his austere existence. His only interest was travel and so the Goa sojourn opened up a corner of clarity in his Alzheimer-jumbled mind. It was a gamble to whisk him away to Goa. We were worried he might fall apart in the strange new environment. But he seems to have flowered; giving me hope that I could, in the remainder of his life, shower him with care and comfort.

The next day we took him to a supermarket to buy him toiletries. I have always known him to be a frugal, even parsimonious man. He saves things rather than use them. A few months ago at his house in Ahmedabad, I found in his closet unused bottles of after shave lotion and several shirts I had presented him nearly 15 years ago. After we reached our home in Goa, I saw his toiletry kit, which was indescribably modest including two throwaway shaving razors that were past their prime at least five years ago. That’s when we went to the store to buy him new supplies.

He was delighted to receive them and kept rummaging in the bag and looking at his new things through the car journey back home. Promptly, he squirreled them away into his suitcase. Knowing his abstemious mindset, I threw away all his past due date toiletries. The next morning and I don't know how, he retrieved his old shaving razor from the waste basket. However, my hope stayed kindled in that he has started using his new stuff; it is a minor victory in my battle to change his ways.

I am no psychiatrist but I feel that as a man alone now, he has a chance to experience new things, especially ease and choice that he long denied himself. My belief is that the new lifestyle might slow down his steady and inevitable mental decline. Nobody really understands Alzheimer’s. There have been many attempts to research and explain the disease in genetic and medical terms. In my layman’s view, it is about individuals, who have been misfits and therefore turned to simplistic views about life: their definitions of success and their existential happenstance.

The late Ronald Reagan is a classic example. He started out as an actor, never succeeded, got into screen politics, waltzed into the position of the governor of America’s golden state, California and went on to become a two-term occupant of the White House. For all the mythmaking, Reagan was never really cut out for the job and only acted the part…and that too in a B-grade performance. On his watch, certain earth-shaking events took place, primarily the implosion of the Soviet Union. He is revered today for starting a conservative revolution in the United States; his acolytes claim the credit for re-ordering the world.

Whatever Reagan did, he slipped into the personal hell of Alzheimer’s. My view is that his simplistic, black-and-white view of the world left no room for critical assessments. I can see the same happening to my father. He told my wife, “I don’t read because I did all the reading that was needed to top all my exams. Why should I clutter up my mind with useless things?” To add to that, he had no friends, no interests: literature or music or art or theater or even television, cricket and cinema. Alzheimer’s came later; his blankness dates back nearly 40 years, which is 10 years before he retired from his job as a senior government official.

The biggest tragedy in dealing with my father is we have to forget my mother. Already, he is certain that the fuss and the funeral had to do with his mother, who died 42 years ago, when he was just 45. He has no remembrance; at least not that is publicly expressed that his wife is gone, just 20 days short of their 60th wedding anniversary.

In the 12 days since my mother went away, I have grown to be the 59 years that I am. Until April 21, I felt I was just 19.

copyright rajiv desai 2008