It took the doctors six months before they could figure out what was wrong with my mother - Hemophagocytic Lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that causes a strong activation of the immune system, such as infection or cancer. A rare disease we were told. A patient may often have been disease-free for most of their life, but then HLH manifests when something like a severe illness triggers an immune response that cannot be shut off. By the time it was discovered, my mother was already at stage 4 cancer and there were not many treatment options available, so we made a palliative decision together for her.

Caring for my mother till the end

Initially, my father, older brother and myself took care of my mother but eventually, I took over as the primary caregiver. Ironically, I was not that close to my parents. Perhaps I was trying to make up for lost time, having been too busy with career, work, church activities and family. But the severity of caregiving sank in immediately. We had no helper, and my parents did not want one initially; we didn't stay with my parents, that made caregiving a challenge, and communication was difficult as both my parents were getting hard on hearing.

My mother’s dementia appeared to get worse as her condition worsened, and I wondered how to make up for lost time with someone suffering from dementia. However, she was always happy to have visitors and it warmed the heart to see her friends come by to encourage her.

During those six months of caregiving, almost every other day, I would be rushing up and down between home, work, my parents’ home and eventually to the hospital, during lunch time or after work. Managing and balancing time with work, home, church, family, it was exhausting, but it was needed!

Managing my own illness

Ironically, after my mom passed away on Good Friday of 2014, i never went back to church for Good Friday for a good 5 years. I would attend church just not on Good Friday, in as much I knew she was in a good place, it was too traumatizing for me. After her passing, I knew I would go through a period of grief, but had not realized, not expecting the extent of caregiver burnout I was experiencing. Not long after, I was diagnosed with Post-Traumatic Stress Disorder (PTSD) leading to severe Major Depressive Disorder (MDD or Clinical Depression).

Before I was diagnosed, I noticed relationships around me started to break down, and it just worsened my already pretty much broken emotional and mental state. I felt guilty and self-condemned for not having been a better son. In the years to come, whilst I struggled with my mental health condition and constant thoughts of suicide, I tried very hard to continue ‘looking normal’ especially at work, but this was extremely exhausting and chronic fatigue set in.

Finding my calling

Two years after my diagnosis, I quite literally took a leap of faith to stop work and enrolled in a three month Bible School course to rest, and receive physical, mental and spiritual healing. It was the start of my recovery. But it still took 2 more years before I felt truly better and was able to wean off my medication completely.

I’m now a certified peer support specialist & mental health advocate/ambassador with Beyond the Label and a trainer/facilitator with National Council of Social Service. I also volunteer at the Institute of Mental Health when they need a peer voice to share lived experiences to their community of volunteers. My wife and I also run a support group at the church we attend.