While Nayma’s siblings live with their parents, Nayma is the backbone of her siblings’ care team. Their parents came to the United States from Mexico as adults and have faced difficulties overcoming the language barrier. Nayma’s past, present, and future are shaped by her role as a caregiver, yet her contribution is often discounted.
Her brother was diagnosed with autism spectrum disorder (ASD) when he was three years old. He couldn’t speak until he was six years old. Before then, Nayma was the only person in the family who could understand what he was trying to convey. Nayma’s brother is now twenty-four years old and has significant support needs to maintain his quality of life. He has depression and takes medication, which is a dynamic Nayma struggles to navigate. Her sister is fourteen years old and was only recently diagnosed with ASD. Her trouble with social skills, such as keeping appropriate distance from others around her, has made it difficult for Nayma’s sister to make friends. Her sister relies on Nayma to help her handle the challenges of being a teenager while also living with an intellectual disability.
As a millennial, Nayma recently entered the workforce. However, Nayma’s part-time job didn’t qualify her for paid sick leave or paid family and medical leave benefits to support her caregiving responsibilities. Nayma’s caregiving situation became even more difficult when her mother became sick and had to be hospitalized and put on bed rest, preventing her from being able to work. Like Nayma, Nayma’s father didn’t have any paid leave benefits available to him and was expected to continue to go into work in order to bring home a paycheck to help support his family. Nayma has no other family in the United States to help support her parents and siblings. Ultimately, a tremendous amount of responsibility has fallen on Nayma’s shoulders.
Nayma walks a fine line as she is expected to be a sister, a daughter, a caregiver, and the family communicator. She agonizes over what is going to happen when her parents are gone—Nayma knows she will be her siblings’ caregiver for life.