In March 2022, Rahul Kumar’s family hired a nurse from a private agency to assist him for three days.
Kumar had been diagnosed with a motor neurone disease five years earlier. He was in his late thirties, and had begun losing sensation in his toes. Before long, he found it difficult to lift or move his feet.
While doctors did not immediately understand the cause of these symptoms, a series of diagnostic tests helped rule out possibilities such as inflammation from allergies and heavy metal toxicity. Neurological examinations eventually pinpointed his ailment.
Doctors told Kumar that the disease would cause muscles that control activities like walking, speaking, swallowing and breathing to weaken over months or years. Its progression could not be predicted, and it could not be cured. All he could hope to do through treatment was manage the symptoms.
Within five years, Kumar had become wheelchair-bound and dependent on caregivers to support his daily needs. His family hired a full-time helper who could assist him with everyday activities, as well as typing on a computer and phone. In March 2022, the family hired the home nurse from a private agency because the regular helper was unavailable. The service cost them Rs 8,300.
On the second day of working in...
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