A caregiver is an individual that is responsible for providing physical, mental, emotional & financial support to family members who are chronically Ill or disabled. Caregiving is a role that no one is prepared for because no one can predict the occurrence of these debilitating conditions. It is important to understand this subject because at some point in time, we may find ourselves in the caregiving role or we may come across a loved one who has to take up these consuming responsibilities. Let us understand the following factors to have a look into the lives of Caregivers:
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Social Isolation & Strained Interpersonal Relationships
In many cases, the whole identity of the caregiver is centred around the patient because so much of their time is solely invested in the patient & often there is no other option for the caregiver due to the severity of symptoms. The caregiver is often not able to prioritize any other relationship because they are left with little to no energy to engage with others. We can understand this better with the following examples:
Nisha is a 37-year-old married woman with a 5-year-old son who was diagnosed with Intellectual Disability, the child has sensory issues which make him engage in risky behavior like banging his headupon the wall or spinning around very fast till he doesn’t collapse. Intensive vocational therapy & special education are required along with focused efforts on Nisha’s part to protect the child from hurting himself. She is constantly worried that if she does keep constant vigilance something bad might happen. She is in a nuclear family; her husband is the breadwinner & due to gender roles, all the responsibility of tending to the child falls only on her.
The husband is well-meaning but he is not able to show up to support her properly because he was taught from a young age that it isn’t his duty to cater to other needs of the child except for the financial ones. The marital relationship is heavily impacted as the couple is not able to find any time for one another, there is built-up resentment in Nisha because she feels like he does not support her in the caregiving role, and their sexual intimacy has decreased because Nisha is always tired or not in the mood. Though the couple is trying their best to show up for each other & for their son in the best way possible circumstances are making it very hard. Her college friends, with whom she shared the best memories now avoid her because in their perspective she has changed & does not put equal efforts into maintaining their friendship.
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Health Issues
Caregivers are more susceptible to developing Mental Health Illnesses like Depression & Anxiety as compared to their peers who are not in the caregiving role. It is a highly stressful responsibility & chronic can stress lead to many health complications. Burnout is often associated with caregiving, it means that the individual has exhausted all of their inner resources & physical energy, and they are no longer able to cope with the demands of their life.
Economic pressure
Caregiving is financially consuming & many times there is too much shame associated with speaking out about this. Caregiving Is seen as the moral responsibility of family members & when they attempt to voice their concerns generic advice is given (eg. Punya kama rahe ho seva karke/ Bhagwan ne itna acha mauka diya hai acche karm karne ka – You are earning so many good deeds through caregiving/God has given you a chance to accrue good karma). Upon hearing this repeatedly the caregivers internalize even more, to not share the economic pressures of caregiving because it is a matter of morality now. Caregiving involves the expenditure of admission charges at the hospital, doctor’s fees, cost of medicines & it impacts one’s ability to earn as well because one has to be physically present for the patient while catering to his professional responsibilities.
Example
Riya’s mother is diagnosed with cancer, she has a younger brother in 8th standard & her father is on the verge of losing his job because he has to alter between being present for his wife’s treatment procedures & being at the office. She always wanted to be a teacher & her mother’s diagnosis happened around the same time as her selection for the government school jobs.
She is teaching at a nearby school, supporting her mother physically, preparing for her exams, & taking care of her younger brother. Her selection would mean adequate money for her mother’s treatment as her current salary is only 18 Thousand Rupees which is barely enough to support the household. The treatment procedures are very expensive, a single injection costs Rupees 7,800 & she is terrified of what would happen if she does not get selected.
Growing up prematurely
Lakshman is a 16-year-old boy studying in 11th grade, his father is an alcoholic & his mother has developed symptoms of depression & he has a younger sister who is 8. He belongs to a lower socio-economic class, from childhood it was told to him by his mother that he is her only hope & since he was good in his studies, he could give her a good, safe & prosperous life. His father would spend most of his limited earnings on alcohol & his friend circle that enabled his addiction. To support his mother, he starts to take tuition classes for children but his entire time goes into earning that amount instead of his studies.
His marks gradually start declining & he starts withdrawing from his peers, his teachers are quite surprised because he had always been one of those students who had a lot of potential. Laksham’s entire identity is becoming centred around making money & trying to end his mother’s sufferings. He may be glorified by society but he has no other choice but to grow up before time & this comes at its own cost.
Not achieving full academic or vocational potential
Balancing work & life is difficult for everyone but in the case of caregivers, it becomes painful because everything feels like a potential life-altering choice. Many caregivers have to let go of opportunities because it would mean that more time & effort will go into their job, which may hinder them from providing adequate attention to the patient. The altered intensity of attention toward the patient can lead to the worsening of their condition, so it is a difficult position to be in. Many times, factors like geographical closeness to the treating Doctor, availability of domestic help, presence of relatives, helpful neighbours & a general sense of comfort feel like the basis of choices one makes concerning their residence.
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Example
Atul is a 42-year-old Senior Manager at an MNC, he was always counted as one of the bankable employees in the company. It was time for promotion & his reporting senior was encouraging him to apply for the upcoming promotion, Atul felt very honoured, he had invested all his life in pursuit of this particular position that he was now eligible for. The new position would require him to move abroad & handle overseas operations.
Despite wanting this his entire, when the opportunity was so close he decided to not even apply because 6 months ago his 79-year-old mother had fallen in the bathroom & injured her hips badly, she had been bedridden since. Atul lost his wife 10 years ago & had 2 children who were at crucial points in their academic lives, his only relief was that the domestic help had been serving the family for a long time & she agreed to take care of his bedridden mother.
He could not afford to lose that reliable support as he had watched many instances of abuse by paid help towards the elderly in the news. He is a great provider to his family but is starting to feel deeply lonely & frustrated at this point in life.
It is often hard for people to understand that caregiving is all-consuming because it is difficult to empathize with the sufferings of those whose lives we have not lived. The cultural shift towards the nuclear family system has also increased the pressure on family members. We often see that individuals who are coming from rural areas or close-knit families for treatment are accompanied by 3-4 people whether it is required logistically or not, this indicates social support.
We also see individuals coming in alone for treatment when they need that social support at that given moment. As a society, we should support caregivers to the best of our ability by providing emotional, mental, physical & even financial support as & when possible. The best act of service toward mankind is being consistently present through the ups & downs of people who are facing challenging times.
