WUNRN
Women's Feature Service
By Sarojini
Vittachi
Masterton (Women's Feature Service) – Today, over 35 million people and their families, worldwide, are affected by Alzheimer's disease and the numbers are only rising. Currently, this irreversible degeneration of the brain is the only cause of death that cannot be prevented, cured or slowed. Awareness is the only hope. Here’s a special first-person account, the story of Jess, or Jessie Promilla Iyengar. Her sister recalls Jess's struggle with the illness even as her family and friends rallied around her.
Jess
(left) with her sister, Sarojini Vittachi. (Courtesy:
Sarojini Vittachi\WFS)
She sat in the garden
under the apple tree, in her wheelchair, reading a detective story. The back of
the book summary told the story: Murders, an illicit love affair and a family
in turmoil. I went out to join her in the March autumn sun, and said,
"Jess, what's the book about?" "I just can't figure it
out," she said and continued reading. We were in
Next day was Good
Friday. A plump, hearty, smiling lady came to the door. "I've brought some
things for Promilla (Jess' other name) and Pixie," she said. Pixie greeted
Anne warmly but didn't introduce us. I wheeled Jess in. In a rather automatic
way Jess said, "Hello, how are you? How nice to see you."
Pixie chatted on
while Anne gave him news from Ekatahuna, a village north of Masterton where she
lived. Anne had brought Easter goodies - lemon curd (which isn't curd at all
but a tangy spread like a conserve or jam), Easter eggs, and hot cross buns.
How very kind of her, I thought. I whispered to Jess, "Who is she?"
She replied, "I've never seen her before." Strange, I thought, Anne
seemed to know everything about Jess.
Later, I asked Pixie
about her. He told me the story. Jess, a doctor, and Pixie, who had left a
lucrative job with a shipping company to help Jess in her country practice, had
lived in Ekatahuna. Anne and her family were Jess' patients. Early one morning,
Anne had gone to feed the hens. On her way back to the farmhouse she was
knocked down by a reversing tractor. She had fractured her legs and arms. Jess
was called. She made her comfortable and called the flying ambulance to take
her to the main hospital in
Now, many years
later, Jess said she didn't know Anne. Did we take this as an indication that
something was wrong? No. We just did not guess what the problem could be.
Partly, I suspect, because Pixie couldn't face the thought that something was
drastically wrong.
The next day her
confusion increased after a walk in her wheelchair. "This is not my
house," she said on her return. "Yes it is," said Pixie and I in
unison. "Look - all your lovely paintings on the walls, and look at the
lovely piece of onyx on the table you had yourself bought long ago."
That evening was the
turning point. It made us see a pattern in her behaviour. And we were no longer
rationalising every incident. It was a tough night for Pixie. This was the
beginning of the time when he would lose his much-loved wife of
over-half-a-century.
When Jess - Jessie
Promilla Iyengar - was young she excelled in her studies, won medals at medical
college in
Jess and Pixie
retired to Masterton. From 2003 onwards, she began to lose her memory, very
gradually at first and then with more falls and fractures, her mobility became
restricted and her brain began to play games with her. I had been a few times
to visit them and, in 2006, I went again to help Pixie to care for her. After
these incidences, it was clear she required medical attention, and we suspected
that Alzheimer's had taken control of her.
Next morning as Pixie
called doctors and friends, I sat chatting with Jess at the dining table. I
said, "Let's play some games." My grandson, when six years old, loved
playing making words from a jumble of letters. "Let's see how many words we
can make with this wheel of letters?" I said. "I don't know. I can't
make any," she said. I went to my bedroom and wept. I had lost my sister.
Her thoughts slipped away before she could articulate them into words like
"Turn on the electric blanket" or "Give me water".
Some days she was
more lucid or so it appeared. She used to complain earlier of pain in her
joints. She didn't any longer. Had the pain stopped? Research suggests that
pain does not decrease in people with Alzheimer's. They are just not able to
express their feelings about pain. Where is the excitement of listening to a
good piece of music, of seeing the rising sun, of smelling the fragrance of a
jonquil flower? There is but sameness in the response. And it hurt me, made me
sad to watch. Does a person exist solely in the brain and its activities,
leaving behind a body, which moves and appears to be normal, but is empty? All
her energy was required for survival.
By the end of March
2006, she was unable to walk and was pushed by Pixie or me in the wheelchair.
She had lost the fight for mobility and her memory was rapidly going. Her
universe now was the bedroom, the bathroom, the living room and the dining
room, with periods in the sun if the weather was good outdoors. Fortunately,
Jess and Pixie had a caring, warm circle of friends, who were proving to be
helpful in this rapidly developing crisis.
After tests, Jess was
diagnosed with Alzheimer's. The doctor prescribed drugs for mild to moderately
severe Alzheimer's Disease. Jess took the drugs for a week. Her hands and one
leg began to shake, which may have been due to the medicine. Her doctor
suggested that the drug be stopped for a week. But even then the shaking did
not stop. Should she go back onto the medicine? Pixie had to decide. He decided
to keep her on the drug, even though the health services would not pay for this
expensive medicine. Jess was deteriorating everyday. Now she was forgetting
things like brushing her teeth. Day and night nurses were looking after her.
Pixie still felt he should be there all the time, taking care of her at home
with tremendous love and gentleness.
I had to return to
Pixie and Jess loved
each other dearly and were always together in their final decades. Life without
her was more than miserable for Pixie, even the pain and tiredness of the last
year of caring for her was missed. He found no reason to live, and in little
more than a year after her death he passed away, bereft of his much loved wife.
He was buried next to her in the Masterton cemetery.