My name is Star (pseudonym) and I am a caregiver for my intellectually disabled brother. This is my story.
Back in the day, giving birth to a boy was of importance to families. Giving birth to a boy was something my mother desperately wanted. However, destiny was not on her side. After consecutively giving birth to five daughters, she felt hopeless. When my younger brother was conceived, she wanted an abortion. As there was a lack of family planning back then, my mother did not know how to go about the abortion. She did not consult a doctor for medical advice. Instead, she started eating foods that could induce a miscarriage. Unfortunately, she was unsuccessful in her attempt and gave birth to my younger brother.
When my younger brother was born, he was very weak. He would fall sick every 2 to 3 days. One day, he fell down while having a really high fever. At that time, instead of going to doctors for treatment, people would turn to spirits and gods for help and that was what my mother did. She sought spiritual help. After realising that there was no improvement in my younger brother's health, we rushed him to the hospital. The doctor said that even if my younger brother was saved, he would be intellectually disabled. My family and I have been taking care of him since then.
After my parents passed and my siblings got married, the role of primary caregiver fell onto me as I am the eldest child. That was in 2003. At that point in time, I was still working and so were my siblings. While we were out at work, there is no one else available to look after him. To avoid him wandering around and getting lost, we had no choice but to lock him in the house. It was tiring to balance work and caring for him. I would prepare his meals in the morning and then rush off to work. I would then rush back home in the evening and prepare dinner for him. While I was working, I did not share with them about my brother and my caregiving role as I was ashamed and afraid that my colleagues will gossip about me. Whenever they asked me out, I would decline. Since they do not know of my situation, they would jokingly ask me if I was hiding treasure at home. The routine of locking my brother in the house took a toll on his mental health. As a result, he was diagnosed with depression.
Soon after, I left work and dedicated my time to caring for my brother.
Weight on my Shoulders
While caring for my brother, I was immensely stressed. I felt frustrated and helpless whenever he threw his tantrums as I did not understand what he wanted. He would also physically hit me or throw things at me if he is unhappy. I could not tell him not to hit me as that will only encourage him further. I found it difficult to keep my frustration in check. I know that I cannot lash out at him as he does not know what he is doing but I do not know where to direct my emotions. So, I just kept it to myself and let the emotions slowly pass as time goes by.
Other than the stress, caring for him is also physically straining. I have to help him with his day-to-day activities like preparing his meals, helping him with his personal hygiene, toileting, and bathing. Even when he is sleeping, I would massage his hands and legs. When he falls sick, I would need to make appointments, bring him to the hospital, queue, and wait for his medicine. As I am not young, it is physically tiring. Essentially, almost all of my time is spent caring for him. I was unable to find time to rest or to enjoy my own activities.
That period of my life was extremely exhausting. My breaking point was when I was undergoing menopause. At that time, I was almost diagnosed with depression. All I wanted to do was hide in my room and cry. I did not want to talk to any of my family members about this as I did not want to trouble them. No one offered to help either so I depended on myself. I brought myself to see a doctor. The doctor recommended me to take walks around the park and look at nature to calm my mind and I have been doing that ever since.
The Ever-so-needed Help Came
My second and third sisters had more time on their hands after their retirement. I think they could also see how much I was struggling with caring for my brother and caring for myself. They came forward and offered their assistance. We came up with a rotating roster where each of us will care for our brother on certain days. With my sisters helping out with caregiving duties, I was definitely less stressed.
However, I think the years of caregiving took a toll on my health. In 2021, I was diagnosed with cancer. When I heard the diagnosis, I became worried. I know that my sisters will take care of him if I were to pass on but what happens if they pass on too? As terrible as it sounds, I hope that he passes on before us because I am worried that no one will look after him otherwise.
Ever since my diagnosis, my sisters took on my caregiving duties and told me to focus on making a recovery (Spoiler alert: I beat cancer). Now, I only help out if they ask me to.
Not all Bad
Even though my caregiving journey was tough, there were little moments in between that kept me going. My brother is adorable. He would sometimes speak in a really cute way or say things to me that were unexpected and those would always make me laugh. He also has a beautiful smile. His smile would always bring about a positive energy and a wave of happiness would wash over me.
The Hard Truth
To all the caregivers out there who are starting their caregiving journey or struggling with caregiving, my advice would be to face reality and be patient, not only with your care recipient but also with yourself. It will be a tough journey initially but as time passes, you will slowly learn and adapt to things. Eventually, you will find it easier to care for your care recipient.
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