DO I KNOW
YOU- ITS ABOUT LOVE, FAITH AND CARE
Prayer
My uncle Mr. Shashi Kudrimoti, whom I have
written about passed away yesterday, hopefully peacefully, a victim of the
menacing virus that has attacked the human race. He is at peace, unburdened by
the challenges of daily chores and the ordinary routine that silently makes our
day, day in and out. Life has unchained him from loneliness that he fought for,
for almost three decades, the last decade unknowingly and in utter sufferance.
We in the family, hope this salvation gives him peace, quiet and a release from
the ravages of Alzheimer.
I had
written this a few days back and was to publish this as a tribute to the love
that bonds this family and faith that can move mountains. I know these words
didn’t matter to him just as everything else considering his illness. But I
hope my prayer reaches his soul.
Dear Shashi
kaka, you have been exemplary in life, illness and death! Go in peace.
DO I KNOW
YOU?
One of my uncles
who is now in his early eighties is suffering from Alzheimer’s for the past
decade and has had to be institutionalized for care under supervision. He lives
in a hospital for the mentally disabled, has a tiny room that includes a small
bed, a table which he has no use of and a chair on which he sits only when the
assistant helps him to. Perched on the table are a couple of photo-frames of
his near and dear ones, whom he occasionally recognizes but immediately
forgets. His physical stature is far from what he was a decade ago. The fair,
medium tall, good looking, almost like a filmi hero, brilliant engineer who
successfully retired as a top executive in a multi-national company, is now
reduced to a shriveled old man whose once handsome features stick out
prominently on sunken listless unrecognizing eyes and cheeks that almost touch
each other from the inside. The characteristic laughter that defined the men in
our family, is long buried, replaced by a slight movement, almost a quiver of a
smile. Only, he is not aware that it’s a smile.
The routine
which we all take for granted has deserted him long ago. Wearing clothes,
slipping on flip-flops on feet, combing what is left on the dry pate, even the
daily brushing of teeth is no longer his domain. Routine can happen only when a
care giver will start his duty hours and do his job. The cup that cheers is now
just a liquid that needs to be pushed down the stubborn unrelenting throat
because the nurse says so. It doesn’t
matter if there is a potato or a brinjal, (which he hated once upon a time), he
has no recognition of what is going down the gullet to keep him alive. The choice
of shirt or the pair of pants to match are not his concern at all. Occasionally,
there is a burst of emotion, an angry word shot out through a feeble voice or
an angry gesture that hardly has any strength with it.
Sometimes in
a flash, the kids’ names appear in his memory. How are they, he asks the care
giver and even before the reply, the face is blank, the memory lost and the
eyes see nothing.
Is it a day or is it night already? Do I know me?
Do I know you?
Yet in this
sea of lost pathway, a bright light burns elsewhere. His sister, my aunt to be
more precise, in her seventies no less, is the beacon that gives meaning to his
existence. She visits him regularly, unmindful of her physical ailments, and
spends precious time regaling him with stories of a happy yet long lost
childhood, updating him on his children’s progress and nagging him for not
eating well. Yet she knows that it all comes to a naught with him. Once in a
while, he appears to recognize her and a smile lights up his face when he sees
her. Its momentary, like a flash. Next moment it’s a blank face again. He has
no memory of his sister. She smiles indulgently, holding his hand!
A few days
back, we received a picture on WA which showed my aunt and her family
celebrating his birthday with cake and candles. Her gentle hand guided his to
the cake and she smiled with utmost warmth as she fed him a piece of cake,
knowing fully well that he had no cognizance of what was happening around him.
Long time
ago, I had read about the story of an old man who used to visit his wife
suffering from Alzheimer disease, who had to be kept in an asylum. In spite of his severely arthritic knees, he
hobbled every single day with a news-paper and a thermos of tea, sat next to
her as she lay staring listlessly in her bed, patiently read out the news,
especially the editorial which she used to love, tell her how funny the cartoon
for the day is, fold back the paper and walk back home hobbling again. This
went on for many days. Finally, the doctor called him in his office and
counselled him in the gentlest possible voice, “You know Sir, you should stop
coming here. She is not getting any better and she does not understand a word
of what you say. In fact, she doesn’t even know you”. The old man looked
towards the doctor with the most loving eyes and said “Yes Doctor,I know she doesnt know me, but I know
her”.
Alzheimer’s
disease, also referred to simply as Alzheimer's, is a long-term
degenerative disease of the brain that usually starts slowly and gradually
worsens over time. The most common early symptom is difficulty in remembering recent
events. As the disease advances, symptoms include
disorientation (including easily getting lost), mood swings,
loss of motivation, not managing self, and emotional
and behavioral issues. As a person's condition declines, they often
withdraw from family and society. Gradually, bodily functions are lost,
ultimately leading to death.
It was in1901 that German psychiatrist Alois
Alzheimer identified the first case of what became known as Alzheimer's
disease, named after him, in a fifty-year-old woman he called Auguste D.
He followed her case until she died in 1906, when he first reported publicly on
it.
The cause of
Alzheimer’s is still a big mystery even after advanced studies on genetics,
cellular proteins and enzymes that can cause or prevent ageing and degeneration
of the brain. The genetic inheritability, the Amyloid deposition theory, the
tau protein theory, so may hypotheses, yet none that could be substantiated for
finding a cure.
The bottom line is
that we still are very far away from understanding the cause. What remains is
fighting the battle together against Alzheimer.
The delaying of symptoms and management has been quite clear and the role of the family, treating doctor, physiotherapist and above all, the caregiver cannot be overemphasized. An active surrounding that keeps the mind alert needs to be created. Physical exercise, mental activity like reading, playing chess and other board games, even a musical instrument keeps the disease at bay although does not stop its advancement. Learning a second language can be helpful as it stimulates the memory and cognitive parts of the brain. Diet also plays a role, as foods rich in saturated fats and simple carbs appear to increase the disease process. Flavonoids and a healthy diet can help in prolonging symptoms.
More
importantly, it is the loving environment and the care given by near and dear
ones that will keep the symptoms from rapidly worsening.
The cascade of
degeneration never stops. Lot of adjustments have to be done. The deterioration
has to be accepted and faced by the entire family and trained caregivers have
to be appointed. Economics and other logistics have to be worked out. It is very traumatic to see the gross physical
and mental degeneration of a loved one. The daily fear of protecting your loved one from the inability to comprehend the surrounding gets the better of the entire family. But the collective strength of the
family can help us to face this very distressing and challenging and losing
battle of our loved one.
The facilities, although available in our country are yet to be at par with those in the developed countries. What sets us apart is that here the family stands with untold love and courage for these hapless victims of age, which is half the battle won! The unconditional care and love given by near and dear ones may not always reach the sufferer, but it definitely makes those flash of moments where memory blinks, happy for that person. It also helps to assauge the guilt we all feel for being normal when disease strikes our loved one, eating his/her body and mind slowly, surely, permanently!
Scientists across
the world are working hard to find a way to catch the dreadful ailment and nip
it in the bud and eventually find a cure so that all of us can grow old without
the fear of losing our mind and body to the ravages of age and degeneration of
the brain.
When I see people
like my paternal Aunt selflessly caring for her brother who no longer
recognizes her, I am humbled to be a part of this family where love and courage
conquers all, and defeats, not the disease, but the purpose of it.
My dear Uncle, You may no longer recognize them but your family knows you and loves you deeply.
REINA KHADILKAR
