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Two hours of ‘Me’ time keeps me sane

Wednesday December 29, 2010

Zainab Baker, who cares for her Parkinson’s-stricken husband, talks about how it changed her life

AhmedabadMirror - It’s 5 pm. Architect Fakhruddin Baker sits with his wife Zainab on the porch of a building he designed in Byculla, enjoying the evening breeze.

But the 73-year-old doesn’t remember designing the building. Baker suffers from Parkinson’s disease, a degenerative condition of the nervous system characterised by impairment of motor skills, bodily movements and cognitive ability.

He turns to mumble a few words in his wife’s direction. Zainab understands them instantly and rushes indoors to get a warm pullover.

The condition has not only altered Baker’s life but also that of his family members, especially his wife, who is his main care-giver. “I used to be a very outgoing person,” says the 63-year-old with tears in her eyes. “I love travelling and used to be a member of the Rotary Club of Bombay Sea Face.”

Though the disease set in 16 years ago, Baker was largely independent for 14 years.

As it is crucial for the patient to be active to delay the progress of the disease, he would go to office and work 10 to six; the only tell-tale signs were the immobility of his left toe, which gradually progressed upwards.

He is given supplements to introduce dopamine, a neurotransmitter which facilitates bodily movement and cognition.

But Parkinson’s becomes severe in its later stages. Slowly Baker needed help with day-to-day functions such as brushing his teeth and eating. His condition drastically worsened when he fell down and hurt his head.

In the past two years, he has become completely dependent on his wife. She has had to get up earlier than usual to finish morning ablutions and chores, and then give him a bath, help him go to the toilet, wash, dress and feed him.

As his speech began to distort, it became difficult to understand him. “I used to get angry and snap,” she says. “It took me patience and a year to get used to it.” Lately, he has been suffering from flashes of memory loss, but still goes for evening walks.

Initially, Zainab felt the illness was robbing her of her freedom. Meeting friends, watching movies, or participating in gossip over tea, seemed like activities from another era. “It was depressing for me to get used to the new way of life,” she says. “I used to ponder if this is how it was going to be for the rest of my life. I got angry at him and felt bad when I had to turn down friends would invite me to activities.”

The most drastic change has been in Zainab’s sleep pattern. “I can’t switch the world off and sleep in peace. I have to be alert of the smallest sound. He cannot walk unaccompanied.

Couple of times, he got up to go to the toilet, fell down and started bleeding. I can’t let that happen again. I make him wear diapers these days,” she says. Two hours in the afternoon is her ‘Me’ time. “The maid comes, so I can go out meet friends. It makes me happy; otherwise I would go mad,” she says.

The Bakers have a son and daughter-in-law, who are both professionals. “They are busy and hardly ever at home. They are always very forthcoming, but have their own life. I don’t like to disturb them,” she says.

Their son insists on getting professional help, but Zainab has been resisting it. “A ward boy won’t look after him with as much love and affection,” she says. “Who knows? He might snap at him behind my back. My husband may get depressed. I cannot give up on him like this.”