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Submitted by Club2Care on 6 July 2018
Stock pic of a young woman supporting a young man in distress

Mala (not her real name) has been the primary caregiver for her brother Ram (not his real name) who has been diagnosed with schizophrenia for more than 15 years. Indra Venkatram writes about the challenges Mala faced as a sole caregiver in Singapore.

About Ram

Ram was a very bright and intelligent boy who did very well in school, studying in top secondary and junior college and also topping his cohort in his overseas university.  He was the pride of his family and had great plans for his future.

He first showed signs of depression and anxiety after his mother’s sudden death. The condition escalated further with mounting work pressure and he began to feel that people at work were trying to undermine and sabotage him. These feelings of people being out to get him continued even after he changed jobs a few times.  The family did not think anything of it and continued to counsel and support him. However, his condition continued to deteriorate. One day she received a call from his boss saying that while he was a good worker, he was increasingly getting agitated over issues which were figments of his imagination. At other times, he had asserted that he was God and could heal people.

At this point the family sought medical help when they realised that he was not just suffering from depression and anxiety [which their father also suffered from]. With medication, he was able to hold down a job and function normally. Marriage and the pressures that came with it proved to be his breaking point. This was when he began to show signs of auditory [people out to kill him – would lock himself in the room] and visual hallucinations [a snake whispering things to him], classic signs of schizophrenia. At this point, he was unable to hold down a job which caused further stress in his marriage. It took about 1-2 years before an accurate diagnosis of schizophrenia was made.

Qualities Required of the Caregiver

As a caregiver, UNDERSTANDING and ACCEPTANCE OF THE CONDITION are most important. For a long time, Mala could not accept that Ram had a mental condition and how devastating it can be on the individual.

Once the acceptance came, she knew that she needed to FOCUS ON HIM AND HIS CONDITION, try to understand it and the effects of the medication rather than let her assumptions colour her response to him. In addition, VERY CLOSE MONITORING OF ADHERENCE TO MEDICINE ROUTINES is a must. Patients are often tempted to go off the medicine as it dulls their ability to think and impacts their ability to function normally. This was a major problem. Ram went off the medicine routine many times due to stress from his wife, his own expectation of himself, etc. and each time, he would have a severe relapse and needed to be hospitalised. Until today, Mala and her helper monitor Ram’s adherence to the medicine routine very closely.

In addition to these, the caregiver must have VERY CLOSE RELATIONSHIP & COMMUNICATION WITH THE PSYCHIATRIST and work with them to understand different medication routine and combinations of medications to give [which were changed after each relapse] and its effects. Also the caregiver must be able to put aside TIME to visit the doctor with the patient, providing very effective feedback to the doctor. Overtime, Ram became was very good at hiding his symptoms from the doctor so that the doctor would reduce the medication.  As such Mala had to be ALERT to make notes to pass to the doctor so that he could assess the condition more accurately.

While one gets lots of sympathy from people if we speak of a family member having cancer / heart attack. She feels that somehow that never happens with mental illness which has a greater stigma attached to it. It thus becomes a very solitary journey and the caregiver has to be willing to make some SACRIFICES to journey with the patient, without coming out bitter or angry.

Challenges Faced by the Caregiver

One of the key challenges faced by caregivers is the physical and emotional strain that one goes through. The journey is filled with lots of disappointment, both for Ram [and what potential he had] and periods of self-pity for Mala during periods when Ram‘s condition deteriorated. She took him out of the matrimonial home [on the advice of the psychiatrist] and as the only single member of the family, became the sole caregiver of not just her mentally ill brother but also an ailing father.  

Moreover, as a result of the lack of knowledge and understanding among most about mental illness, Mala was unable to share her challenges with any of her friends. In fact, she felt that life had dealt her a bad set of cards. As her friends got married, had kids and settled down, she was left looking after her sick brother and father.  In fact, she lost many of her friends as she could not openly share her challenges with them. Whenever she did share her struggles, friends too did not know how to respond. Slowly she dropped out of social circles and was even labelled as a “depressive.”

Another challenge Mala faced was conflict with other members of the family. The married siblings had their own families and could not spare the time to help with Ram. Often her requests for help were met with their suggestions on how she should manage the situation. For example, their solution to her inability to cope was to send him back to the matrimonial home which she knew would only aggravate the situation.

Structurally, she had no idea of where to seek help and what type of assistance was available to her. There is no clear information if there is any avenue for financial assistance which hopes to get considering that she is now retired. As a civil servant, there was also no leave for single women for caring for siblings.

Silver Linings

According to Mala, Ram’s psychiatrist has been God sent. She can message him anytime and he responds, he takes the time to explain things [e.g. the negative vs positive symptoms of schizophrenia] to her and most importantly, spent time with her to counsel her about her responses to her brother.

She feels that it is her religious beliefs and strong value system that has anchored her in her duty to her brother. Religion as a major anchor has helped her to understand that each of us has a separate journey and to not compare with others. She just hopes to do her best in her seva [service] to Ram and his family.

Over time, her family did show appreciation for what she was doing to support her brother and father and did increasingly try to help. Mala too tried to understand their constraints and their journeys and lowered her expectations of them. That made a great difference as they all came to a better understanding of each other.  They, too, have openly acknowledged the difficulty in her role both physically and emotionally and have tried to give her much needed breaks to rest and reenergise to continue to support Ram every now and then.

What sustains Mala is her strong sense of duty and desire to see her brother improve and be able to function independently.  Seeing him in a stable condition gives her satisfaction. In a very uncanny way, caring for Ram has given her a sense of purpose.  She feels that this experience has made her a better person with empathy for the less fortunate, patience, compassion and an acceptance that there will be good and bad days. She has accepted that this is God’s will and that she will follow the path set out for her.

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