Sharing Care with the Caregivers

For the people residing in remote areas across India, access to infrastructural facilities has become a rare privilege. At times the natural barriers in the landscapes, such as a towering hill or a deep lake cut off a small premise from the rest of the village area, making it a secluded world on its own. Certain villages are even inaccessible by regular roads. Arrangements such as a single-seater rope trolley or narrow bridge that sags heavily under the weight of the traveller’s foot become the only connecting routes that allow the natives access to the world outside.

Laali, a 60-years old woman from the Nathara village of Rajasthan, has been residing in a remote segment since her childhood. The impediment to her interaction with the wide world is not the location of her home but also her differently-abled body. Since childhood, Laali has been struggling with the proportion of her skeletal development. As her age started to roll forward, Laali’s spine began hunching towards her chest. Her limbs grew distorted and disproportionately curved.

Witnessing this abnormal growth, Laali’s father Chattraji consulted the Udaipur hospital which is very far from the village. Owing to their slim financial predicament and distance from the hospital, Laali’s treatment could never continue uninterrupted. Despite the unfruitful breaks in medical care, Chattraji unconditionally provided for his daughter’s emotional and material need of support throughout her childhood.

Age started to show on Chattraji’s face. As his strongest days approached an end, driving him closer to his departure from his earthly existence, he handed over Laali’s responsibility to his elder son and daughter-in-law. Chattraji passed away leaving Laali deserted of the greatest support she had in her trying times. Her brother and sister-in-law tried to make for his absence but nothing could have compensated for the loss of such a loving father. Life has to continue in a rhythm with time, so did it. Laali remained unmarried as her health continued to depreciate and the disability hampered her capacity to even move on her own.

For some years in her youth, Laali used to briefly move from one place to another on her own by propelling the floor with hands while being seated on a small wooden board fitted with wheels. Ageing compromised her ability to move. However, her brother and sister-in-law continued to help her in using the washroom, bathing, eating, moving to far places and so on. While hardships allowed no respite to Laali or her caregivers, the unforeseen medical emergency brought by the COVID-19 pandemic worsened their lives.

Lack of access to proper medical care during the COVID-19 pandemic made Laali and her caregivers vulnerable to the infection. Her existing health condition and elderly age were the greatest risk factors for susceptibility. The blow imposed by the second wave of COVID-19 on the family’s income had already impacted their capacity to afford an everyday meal. In such a condition, meeting medical expenses and the increasing need for sanitisers and soaps kept on adding challenges every day. More than the threats of the virus, the escalating financial burden made it hard for the family to take care of Laali properly.

To ensure that Laali’s health is taken care of, it was also essential to safeguard her family. When CASA learned about Laali’s condition, the family was assisted with a hygiene kit and INR 3000 for survival-related aid during the second wave. After receiving the aid, Laali shared that the amount had been of great help as she wanted to help her sister-in-law in purchasing rations. Moreover, she required some medicines to support her health which could now be managed with the sum. The hygiene kit has also helped her and her family stay safe from COVID-19.