Knowing when to pause: A caregiver's perspective

"Stop and breathe." These words echo in my mind each time I attend to unexpected situations arising from my father's medical conditions.

Four years ago, my father fell at the void deck and was rushed to Tan Tock Seng Hospital (TTSH). He was diagnosed with stroke and sustained two more strokes over the next two years. The series of strokes led to his diagnosis of vascular dementia in 2015, rendering him bedridden, unable to speak, chew or swallow.

I took on the role of main caregiver for my father at the age of 24, in my final undergraduate year as a psychology major. The stress of having to respond quickly to my father's symptoms such as breathlessness meant multiple sleepless nights, often accompanied by fatigue and emotional exhaustion. The constant fluctuations in my sleep-wake cycles and my father's changing personality - a symptom of vascular dementia - proved to be a challenge to my family and me in the first three years.

Being a caregiver is not easy, and it can easily lead to significant stress and burnout. I found myself frequently worrying about my father, even when I was at school or work, spinning stories in my mind because of fear and anxiety about what might happen in the future for my father, myself and my family.

I recall being afraid of the uncertainties that were tied so closely with my father's medical condition, such as when my father's life depended on the family's collective decision to insert a feeding tube.

This decision would greatly impact his quality of life, and was incredibly difficult to make. It was one of many decisions to come as his condition fluctuated - stressful not because of how it was going to impact us, but because of the uncertainty of what really mattered to him. Deciding between quality of life and length of life was a challenge, and continues to be.

Over the years of caring for my father, I have learnt that coping and thriving as a caregiver depend on both external and internal factors.

Learning to care for someone with complex medical conditions requires competent knowledge, and sometimes understanding that one cannot do everything on their own.

The comprehensive medical care and caregiver training provided by TTSH was crucial to stabilising my father's symptoms and me picking up the skills required to care for him at home. Being a full-time student and subsequently starting work meant that I could not be at home 24/7, and various social service organisations have been a great support, including AWWA Dementia Day Care Centre, Alzheimer's Disease Association's elder-sitter programme, and Brahm Centre's befriending programme.

The unwavering support of my then fiancee (now wife) and family, with extensive assistance from our domestic worker, was also key in enabling me to cope in my journey as a caregiver.

 

Caregiving also extends to caring for yourself. My daily practices in mindfulness have helped me become more aware of my stress triggers. "Stop and breathe" is one of the ways I remind myself to return to the present moment, keeping myself calm so that I can provide the best possible care to my father.

My experience as a caregiver has not only benefited my father, but others as well: I use my personal experiences and evidence-based mindfulness techniques to help and support other caregivers. Through courses and workshops, I teach them how to cope with stress and cultivate self-care as a qualified mindfulness-based stress reduction teacher.

I have come to believe that caring for myself is not self-indulgent. Caring for myself is an act of survival.


  • Eric Lim is a mindfulness trainer. He was awarded the 2017 Young Model Caregiver (Merit) Award by AWWA for his contributions as a caregiver.
A version of this article appeared in the print edition of The Straits Times on October 13, 2017, with the headline 'Knowing when to pause: A caregiver's perspective'. Print Edition | Subscribe