Hidayah: Self-Care for the Caretaker of a Sibling with Bipolar Disorder

“I’m a caregiver to my elder brother. He’s 28 and was diagnosed with bipolar disorder. He has intellectual disability as well, so for the past two months, he’s been at IMH (Institute of Mental Health) to receive treatment for his mental health condition.

When someone has bipolar disorder, they fluctuate between states of depression and mania. Different people experience these different states at varying levels of severity. My brother has Bipolar II so he goes through episodes of extreme highs and lows.

When I was younger, I didn’t understand what was going on with my brother. I was ignorant in a sense and that – rather guiltily – made everything easier to tune out. At that age, my mom was the one caring for him, so I never really paid any attention.

I only became more aware of his needs when I ended poly. I was free one day and didn’t know what to do, so I decided to accompany my mom to my brother’s treatment. She was delighted because she’s Indonesian and not very good at speaking English.

Many times when she spoke to the doctor and sought help for my brother, she tended to get side-lined. When I followed her to IMH and spoke on her behalf, she felt like my brother was getting more urgent attention.

When you become more in tune with a person’s needs, however, you also become more involved, so it’s difficult for you to take a step back. Now I am too involved and sometimes get too absorbed in the situation.

As his caretaker, I help manage his emotions at home when he has a meltdown or relapse. But because my mom also has depression, they tend to trigger one another. I’ll have to be the middle person and that gets very taxing over time.

I’ve even had to seek professional help for myself. I would see my counsellor and keep her updated on what’s going on in my life and how I navigate this challenging journey as a caretaker at home.

Some of the questions I’d ask myself were, ‘How long more do I have to go through this?’ and ‘When am I going to have my own life?’ You don’t know when the end is sometimes and it can feel like you’re constantly tied down by your family and their issues.

But over time, as I became more equipped to not just support my brother but myself, I realised that I needed to learn how to move on. My mom understands that I’m a grown woman and that I’m eventually going to get married and have a life of my own.

Yes, I did feel guilty but I think it’s only human to feel this way. I’ve had to reconcile my thoughts with my feelings and remind myself that experiencing guilt is a natural process when you’re moving away from your family members.

At the same time, it’s about reminding my family that even though I’m moving out of the house and moving on to the next stage of my life, I’m not abandoning them. I will still be there for them, visit them, check in on them and accompany them to their treatments.

If I have any advice for other caretakers, it’s to learn to have empathy and compassion for yourself. I think many times we think that we can do better and must do better. But we are human and there is only so much you can do for yourself and your loved ones.

Reaching out and seeking help also helped me a lot. Know that there are resources and people out there who are able to help you. I know this because I work at a non-profit organisation called Caregivers Alliance Limited.

We provide mental health training and support to caregivers or people with mental health issues. In our classes, I tell them that at the end of the day, if they want to be able to help their loved ones, they need to be able to help themselves first.

For me personally, my fiancé has been the one to remind me that everything’s going to be okay. Easy to say, he’s the backbone for me in certain situations. If I’m the one giving assurance to my family members, he’s the one giving assurance to me.” – Hidayah, 26

Interview by: Arman Shah