Tuesday, 13 March 2012

No Country for Old Men (or women)

My mother cares for my father, who has dementia. She is 70 this year. He turns 83, I think. We're not sure, actually, because my dad has never been forthright about his age. "When we got married, there was 12 years between us. But every year, the gap grows smaller," says my mother of the age gap between them. It doesn't matter anymore really because for my father, age is now a state of mind. Older memories feel real, the present is something he cannot comprehend or deal with.

Some evenings at 3.30 pm, he tells my mother that I will come home soon. I think at that time in his head, I am still in college and he expects me to open the gate and get home any minute now. Sometimes, at around 2 or 3 am, he wakes my mother up saying he's going to Calicut. Never mind that they live in Calicut. Inside his brain, something tells him he's not home yet. So while my mother watches, he slowly attempts to get out of bed. After a while, he tells her, he'll leave in a bit. So they go back to sleep.

Every day, my mother has to ensure that my father has no opportunity to open the gate and go out. Once when they were on a train back to Calicut after visiting me in Bangalore, my father got down at a station and walked off. By a miracle we found him again. But we may not always be so lucky. Because I live in Bangalore and my sister in Dubai, it's my mother's lot to look after him, clean up after him and yes, make sure he doesn't go wandering away. They could come and live with me, of course, but my mother says Calicut is her home. There she has her friends, a well-paying job that ensures she gets out of home for a little while every week. Besides, they live in a proper house, with a yard, a drinking water well and space to walk about. Here in our tiny flat in Bangalore, my father feels constricted. He cannot settle down. Always he is anxious that it is time to go back to "Calicut". It is more a destination than a place for him.

Last week, my mother hosted a care-givers meeting at our home in Calicut. Quite a few men and women came--women with husbands who have Alzheimers or dementia, men caring for wives who are slowly wasting away, mentally and physically. Each spoke of the tremendous patience and strength it takes to be a 'care-giver'. Sharing their experiences and struggles gave them support, says my mother, a feeling they are no longer alone, that there is someone else who understands what a toll caring takes.

There are many people who do this across our country, because we are a nation with a growing problem--senior citizens who slowly develop Alzheimer's or related disorders that cannot be cured or reversed. There is practically no infrastructure or support system to help such people or their families. There is an Alzheimer's and Related Disorders Society of India (www.alzheimer.org.in) which is a group, entirely voluntary in nature, that aims to create a support system for people like my mother, in caring for people like my father.

ARDSI runs day care centres across India and even some Old Age Homes to look after people with advanced dementia. In Calicut, there is a Malabar Harmony Home located very close to my old school, St Joseph's Anglo Indian Girls' High School. Pradeep from the Home comes to my house twice a week to bathe my father and make sure he is clean. Pradeep is a caregiver at the Home and he is a boon for my mother, because my father, so truculent with her, is as passive as an obedient child with him.


Now ARDSI, Calicut, who employs Pradeep, plans to shift the Home. Their lease at the old premises is up. Problem is, the only land available is far out of town, difficult to reach for those who need it the most, the elderly. Come to think of it, why are old age homes and care homes located so far from the centre of a city, any city? If anything, care homes for those with dementia need to be even more accessible, not shunted to the outskirts. People like my father tend to wander, because their brains are slowly shutting down--so everything from memory to coordination and logical thinking no longer exists. So if a person with dementia walks out of such a care home, he or she is at great risk--from the elements, speeding vehicles, falls, anything really. Imagine someone like my father shuffling along aimlessly, somewhere in the outskirts, close to the highways. It would be almost certain death.

It is so easy to classify people as "old" or "elderly". But when we do that, we forget they are our fathers and mothers, uncles and aunts. We also forget that one day, we too can end up just like them.

 (ends)