To have and to hold

Manjari Sharma New Yorkbased fine art photographer knew her mother Kiran Sharma as the loving and hypercaregiver of their family of four She knew all the Beatles songs and could quote Shakespeare says the 36yearold whose India base is her parents home in Lokhandwala Andheri She was sharp and had a great sense of humour a performers voice was humble warm sophisticated and hospitableKirans husband has reduced his working hours and takes her to the beach as often as he can Its their happy place He used to be the one fussed over but is now her sole caregiver My mom used to complain that dad didnt pay enough attention if only she could see how selflessly he serves her This makes me think about the marriage vows To Have and to Hold What happens when you can hold but you cannot have says ManjariThree years ago the now 63yearold started experiencing acute depression and mood swings Shed get stuck in the dark moments of her life relive them repeatedly says Manjari She first became hard of hearing and more internalised The swinging behavioural changes required a high level of patience especially from papaKirans son has a highfunctioning social disability called Aspergers syndrome a mild form of autism In spite of limited resources for him in India Kiran did what any sophisticated expert now prescribes mdash she kept him busy gave his life structure and taught him to focus his energy It is a harsh reality for him to accept this drastic change since she was his best friend says Manjari All of us grapple with accepting that dementia has no recourse but for my brother it will be a steeper climb During one spell of paranoia she refused to have her blood drawn for a test Even my brother whose condition means he is unable to empathise told her Look mama it doesnt hurt I am going to get it done tooThe family consulted doctors and for the first six months it seemed that Kiran suffered from clinical depression that manifested itself in hallucinations paranoia and psychotic episodes She developed an obsessive fear of cats and dogs and turned unexpectedly violent towards us and strangers says Manjari who made seven trips to India in twoandhalf yearsMom went through a stage of obsessive chanting says Manjari She would sit in a room reading endless pooja books for as many as six hours and would carry them along everywhere she wentShe turned into a recluse and became increasingly forgetful about everything from dates to events and then peopleBy mid2013 Kiran was diagonised with dementia Emotionally the family has had to cope with constantly shifting symptoms As the four learned to accept public embarrassment and come to terms with the degeneration of her condition Manjari noticed that the dynamic was changing As an artiste I am compelled to point my camera at what my mind cannot escape and the last two years have been all about my mothers illness I cannot change it I can only document it she says choosing to feature several of these frames on her Instagram accountManjari has not restricted interaction between her threeandhalfyearold daughter Siya SharmaGaines and Kiran Just as my daughter was starting to make memories my mother was beginning to lose hers she says I had a beautiful bond with my grandmother and I didnt want to deprive Siya of hers so what if her naani is not like the others Children are very emotionally intelligent and mama even during her violent episodes would be very gentle to Siya Her face lights up when she sees herThe biggest change this brought into the family was to transform her 64yearold father Sunil into a handson householder No one suffers more than the spouse she has become his baby My parents were always bonkers about each other but he has had to learn to run the house bathe and feed her be vigilant 247 because she has a tendency to wander all whilst running his business says ManjariIn the acute depression that heralded the illness Kiran lost 10 kilos In this picture where she is hugging my husband Bill Gaines she looks defeated says Manjari But this is not a sad story Society at large mdash friends family watchmen and domestic house help mdash has become more important than everKiran has now lost all words vocabulary and coherent speech She does not recognise her family But in some ways says Manjari she knows we are her crew mdash a people to be trusted or who live with her PicsManjari SharmaEmotionally the Sharma family has truly bonded to help my dad says Manjari When you cant throw money or doctors at a problem all that remains is how much tolerance your neighbours can extendThis is an image of Kiran in 2005 when she visited Manjari in USA Kiran has a Bachelors degree in English Literature and would always have soulful music playing in their home Even now she reacts to mausic instinctively by flapping her elbows to the beat and the family breaks out into a dance session at least once a dayI guess when my mom became the baby we all had to grow up Our lives have interlocked stronger and though we might be fractured from our loss we are more together than ever she adds