Reel Caregiving: Glimpses of Caregiving – The Sky is Pink

#1 Snapshot of “The Sky is Pink”

A story in the words of Aisha, who was diagnosed with SCIDS (Severe Combined Immunodeficiency), her family’s (Aditi, Niren and Ishaan Chaudhary) challenges in caring for her. The movie captures various phases of  caregiving and also her adolescent passing away due to complications from treatment and how they all cope with it. Past experience of early death of their first daughter causes Aditi to be obsessed about the  patient and treatment, making Ishaan’s needs secondary to that of Aisha. The movie explores the impact of caregiving on Aditi, Naren, their marriage, the overall family. Aisha’s decision to not undergo a risky surgery just to extend the duration and not quality of life is a revelation.

We will be showcasing various caregiver and well-wisher learning moments in a Reel Caregiving Series… Watch this space!!

#2 Impact of Caregiving on the Physical, Social & Financial Well-being of the Primary Caregiver

In our previous post, we gave a snapshot of the movie “The Sky is Pink” which is based on a family’s caregiving journey.

In this post we discuss the impact of caregiving on one’s physical, social and financial wellbeing.

Aditi, the mother of Aisha, became the primary caregiver to her daughter when she was diagnosed with SCID. Aditi and Niren shifted to London to attain better and efficient treatment for their child. Coming from a middle-class Indian family, it was difficult for both of them to pay for Aisha’s treatment in London inspite of exploring different means of income. Being the only caregiver to her daughter, also left her feeling isolated from her family and friends at home.  Aditi was not only a caregiver but had to juggle her responsibilities of being a mother and wife as well. She also worked all night and researched the condition whenever possible.  Due to her busy day and night schedule, Aditi’s sleep routine was disrupted, which affected her physical well-being. Being a caregiver not only had an impact on her physical well-being but her social and financial well-being were also affected.

We will be taking you through the other elements of well-being that were affected during her caregiving journey. Watch this space to know more.

#3 Impact of Caregiving on the Emotional and Spiritual Well-being of the Primary Caregiver

In our previous post, we highlighted the physical, financial and social aspects of well-being of Aditi.  In this post we look at the impact of caregiving on one’s emotional and spiritual well-being.

Aisha was Aditi’s second child born with SCID, the first one passed away within a year. Aditi had not overcome her guilt of not finding a cure in time. This led to obsessive focus while caring for Aisha. During the last days of her first child, Aditi embraced a faith that gave her spiritual strength.  However it appears that she was not as diligent in maintaining spiritual practices as part of daily life. Only when Aisha chose quality of life over yet another treatment did Aditi ensure making her happy and to feel good about herself. However, in this process, she tended to de-prioritize her own need for emotional support and also lost touch with her spiritual side. Her typical caregiver inability to do justice to other roles and relationships within the family took a toll on her emotional well-being. Only later we see how she heals, to rebuild her relationship with her husband.

Considering caregiving as her primary identity, Aditi lost her sense of purpose after the death of Aisha. She didn’t seem to let go of things that are associated with her daughter, highlighting her inability to deal with grief and accept the reality. While there were things the family could be grateful for, Aisha tended to focus only on the loss of her daughter and it appears that balance through gratitude was missing.

In our next post, we will look at Aisha’s father’s caregiving journey and the effect on the elements of his well-being.

Watch this space!

#4 Impact of Caregiving on the Father’s Financial well-being, State of denial,and Social Well-being. 

In our previous post, we focused on Aditi’s emotional and spiritual well-being and her loss of identity. In this post we look at the impact caregiving had on Niren, the father.

Over time (though Aditi pitched in initially), Niren has the main responsibility of maintaining the family’s financial well-being. Initially, the focus on his career was to support his family financially, but later it appears to become a coping mechanism. While he and his son move into London to be with his family, he barely gets to spend time with Aditi while juggling his roles as a father and as an employee.

Apparently, his workplace was where he was heard and had some decision-making ability. Unlike Aditi, Niren seems to deify doctors for Aisha’s treatment because of being fearful of losing another child. His focus on his career also allows him to have an identity beyond caregiving. On the surface, the dramatization doesn’t show Niren having any obvious spiritual inclination and tends to live in the moment. This may have helped him deal better with Aisha’s death.

Over the years it seems that Aisha’s illness leaves Niren receiving even less attention from Aditi. Aisha’s death eventually appears to take a toll on his marriage as well, mainly because of difference in coping strategies from that of Aditi’s. Niren looks like he is not as affected by Aisha’s death as her mother which is likely to be bottled up grief. A poignant scene is when he gathers his courage to enter Aisha’s room and feels guilty about his state of denial. The healing and rehabilitation from caregiving, financial struggle and feeling inadequate/lost comes when Niren makes peace with his past and rekindles his relationship with Aditi.

In our next post, we will be focusing on the brother’s perspective of the caregiving journey.

#5  Impact of Caregiving on the Brother’s Emotional Well-Being

In our previous post, we highlighted how the father’s well-being was affected by Aisha’s condition. In this post, we will be sharing the effect it had on her brother, Ishaan.

 Throughout the movie Ishaan and Aisha have an unexpressed relation of love and care for each other. The movie appears to be focusing more on the parents’ journey as caregivers whereas only a few moments of grief and frustration felt by Ishaan were highlighted. We believe, the grief faced by young members is often overlooked by our society, because of which it also gets more difficult for them to cope with the same. As a kid, Ishaan had a lonely childhood away from his parents, as his parents were in London for Aisha’s treatment. While his parents were preoccupied with their daughter’s health most of the time, Ishaan’s emotional well-being was highly impacted.  Ishaan was a caring and protective brother but he never discussed his emotions or worry over his sister’s health instead he expressed his frustration by playing drums.

In the movie, Aisha refers to her brother as Giraffe. She mentions him preferring to run away from the situation, due to the stressful environment in the house between the mother and father regarding Aisha’s further treatment. During one of their phone calls, he lets her know that he is there for her but soon after the call, he has an outburst where he feels helpless about not being able to save his sister. The outburst can also be looked upon as a feeling of loneliness as he had no one he could share his feelings with.

 Just like Aisha’s parents, it was very difficult for Ishaan to deal with the grief of losing his little sister. A scene where Ishaan and his father hug each other and cry after Aisha’s death is a clear expression of the bottled-up grief in their hearts.

 In the next post, we will be sharing the patient’s perspective. Watch this space to know more.

#6 Understanding Caregiving from the Patient’s Lens

In our previous posts, we have explored the effect of caregiving on Aisha’s family. In this post, we look at the role of Aisha, the patient and in some ways also one who cares for her family’s well-being.

Aisha, as we know has a serious and terminal condition. She is restricted by Aditi from participating in “normal” activities which could be seen as just simple pleasures of life. While Aisha appreciates her mother’s overprotective nature and the reasons, but naturally she also gets frustrated at times. Aisha’s social well-being only improves after she joins an actual school in India. She spends a lot of time writing and painting, telling a story or a message as a form creative expression to improve her ability to deal with the situation.

Though she is usually jovial, in one scene, she expresses her grief about dying to her brother, revealing her suppressed emotions. Importantly, she hardly ever feels comfortable sharing her true emotions in front of her parents. Superficially, it may seem that Aisha is not traumatized by death as much as her parents are, but in reality that’s coping mechanism and also her way of protecting her parents from additional helplessness. Aisha recognizes her parents’ efforts, their grief and anxiety. Despite knowing how much her father wants her to live (at any cost), Aisha prefers a gracious death to leading a poorer quality of life for an uncertain period of quantity of increased life. She takes a spiritual plane to comforting her parents by reminding that her memory and spirit will always be there with the family.

This helps Aditi accept reality and gives her an opportunity to focus on ensuring that Aisha doesn’t miss out on important life experiences, though still maintaining precautions. Though Aditi does seem over-enthusiastic, Aisha indulges her with a smile to encourage Aditi. This showcases the changing dynamic between the caregiver and the care-receiver once acceptance comes and it becomes more important to celebrate the part of life which is at hand.
Aisha puts her parents’ well-being before herself a lot of times – not letting her parents see her pain, attempting to comfort her family and not expressing her frustration at being restricted. In these ways, she is adopting the role of a caregiver herself.

In our next segment on Reel Caregiving, we will explore caregiving in another movie.  Watch this space!

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