She was born with a genetic disorder which gradually weakens her muscles over the childhood years. By the time we got to know each other, she was unable to take care of herself, and required round-the-clock caregiver to help her with everything including eating, toileting, showering and dressing. She is also unable to walk, so she goes around in an motorised wheelchair.

Started out on a professional basis

Our relationship started in professional training, so we already had ongoing rapport. When I was informed that the professional responsibility will be extended to include caregiving, I was a bit of shocked. The expansion meant that I would have less time to rest after our professional training.

However, due to the team’s financial and travel constraints, I agreed to try. As a cognitive person, my first response was to ask for caregiver training. That did help to prepare me for the physical aspect of the daily routine, but there was no warning about the mental toll.

As training partners, we were peers and equals. Although I had to be at her every beck and call, that would stop once the training was over. But when I became her caregiver, there was no break. Even when I was asleep, I’d have to wake up to tend to her needs.

We were coping well for several months, during which time the physical fatigue was building up. I started to develop body aches from our training but there was no allowance for me to rest more. I noticed my patience and tolerance getting shorter and shorter, I was becoming more critical and harsher towards her. We used to meet up, hang out at new cafes to talk about news and share our thoughts with each other, but gradually, our voluntary time together grew lesser and more silent.

The challenge of burnout

I experienced burnout about 12 months into the role. Our time together had gone from voluntary and friendship to unwilling dependence. Even others around us can feel the tension and would try to diffuse it by helping out at mealtimes, so that I can have my time apart from her. The frustration was mutual, but because of funding limitations, I still had to double hat as both her caregiver and training partner. I lost my passion for our training because I was always tired from the sleep debt and the endless requests for help.

One of the reasons why it was exceptionally difficult to be her caregiver was because she was very particular about the way things had to be done for her. She had to wash her hair at a certain time of the day, and there was no rescheduling even when our travelling schedule was tight. She had to try to pass motion every morning, even when it was taken out of my rest time. The compromise always had to come from me.

Finding support in the struggle

It was a constantly changing support network. In Singapore, I had a few friends who were my core support group. While we were travelling, we’d meet familiar faces within the same professional circle and they’d invite me for drinks after the day’s training.

Initially, I did wonder why a lot of the other partnerships were parent-child, spouses, or siblings. I was a rare breed, a friend doing it voluntarily, all expenses paid but otherwise without remuneration. When I started to burn out, I realised the nature and foundation of their familial relationships were a lot stronger than friendship. Parents naturally take pride in their child’s achievements, as do siblings and spouses. Those relationships are mutually beneficial, whereas I got nothing from it.

On one hand, I’m grateful for the learning experience as a caregiver for a person with disabilities. The lessons I’ve learnt along the journey are priceless and has helped me to empathise with my patients’ caregivers in a way that other clinicians are unable to relate to. As a result of this knowledge, I’ve changed the way I work to place more emphasis on the caregiver. On the other hand, to learn these lessons, I’ve lost a friend. The relationship became so strained that once it ended, we never spoke to each other again; the memories were just too painful to relive.

Advice for caregivers

Don’t be afraid to ask for help. While a lot of people might not be able to help you, you might get lucky and find a helping hand out of a hundred, and that one might have the answers you’re looking for.

Reach out actively. Don’t expect people to know what you’re thinking or struggling with. Don’t belittle advice from others. It might not apply to you now, but it might be useful one day in the future. Keep it in mind.

Don’t try to do too much. It’s a marathon, not a sprint. Allow things to happen in reasonable time; don’t try to get everything in place NOW AND TODAY. Schedule protected breaks into your routine. You will need them, some quiet time to yourself and your feelings. Allow yourself to feel your feelings. Acknowledge them, whether they are feelings of frustration, incompetency, or joy. You deserve to be validated.