- An octogenarian father has been forced to put his daughter who has schizophrenia in a residential rehabilitation centre. For many years, till his wife was alive, the couple were caregivers of their daughter but not any more. The fight “against chronic schizophrenia is daunting for a super old surviving patient...”
- A mother’s life was full of struggle after her daughter was diagnosed with cerebral palsy. More so because her husband was not supportive. The mother had to sell her gold jewellery to buy shoes and equipment for her daughter
Stories of struggle, despair, closed doors and hope have been shared by caregivers of individuals with mental illnesses and special needs in a book.
The caregivers who have penned their experiences are mothers, fathers and siblings who have struggled with their children or family members.
Titled Undefined Development, the book is edited by psychologist Ishita Sanyal, founder-director of Turning Point, an organisation working with individuals with mental illness since 1998.
The book will be released on Friday at a programme to commemorate 25 years of the organisation.
“While planning this Silver Jubilee celebration, I thought why not make the caregivers a part of this journey and let them narrate their own bitter-sweet memories... In these 25 years, I have discovered that caregivers should be considered a partner in the treatment, growth and development of people with special needs,” Sanyal has written in the introduction to the book.
Sanyal, who was herself a caregiver to her younger brother with schizophrenia, said the book shows how development of those with mental illness can take place.
“There are caregivers who stop at medicines but for many of the individuals, development happens through drama, music, play, community feeling, which people should know about. If a caregiver does not have an understanding, it will impact the development of the individual,” she told The Telegraph.
The experiences are in the form of short stories that the caregivers have written. The stories are replete with emotions and a positive spirit to not give up despite roadblocks.
“...I have not lost my hope and I want to build a good future for me and my children because I know and believe that hard work is the key to success,” the mother of a special child has written.
Some of the writings are of people from other cities.
The octogenarian father who had been a caregiver for 31 years has written: “He lives alone in his house and she lives alone in her room in the residential rehab centre. He feels so helpless parting with her during his weekly meetings. As he escorts her to the lift, with a lump in his throat, he sees the disappointment in her eyes as they wave to each other: he has not asked her to come home with him.”
“These are all extraordinary real life stories of ordinary people fighting all odds in their life to initiate development in their children... Maybe through these wonderful stories we would discover how to restart development, how to build the right environment for growth and development,” Sanyal has written.
The book ends with a chapter on Turning Point — about how the organisation helps develop identity and social consciousness.