I am not a carer

Theoretically, I ticked all the boxes of a carer, but a label will never do the experience justice.

Art by Eamonn Murphy

These summer holidays I was introduced to the world of caretaking. And no, I did not work in an aged care facility, or in a hospital. For the most part I spent my time at home, with my grandparents who were visiting Sydney from overseas. Like many, my grandparents suffer from a plethora of chronic health issues, ranging from aching limbs and sore spots to heart palpitations, fluctuating blood pressure, and hypoglycaemic incidents. Just the bitter gifts of old age, you see.

While tours of Sydney and beyond were a must, outings were often followed by at least a two-day recovery period. In these moments, I found myself involved in caring duties for my loved ones.

Over time I’ve become more intrigued by the word “care” — a harmless, altruistic word that means looking after, or providing for someone. But over a prolonged period of providing “care”, one extra letter hitches itself to the rest to form the word “carer”. This word has additional baggage associated with it.

According to NSW Health’s definition, a carer provides ongoing, unpaid care to family members and friends who suffer from a disability, mental illness, chronic conditions, or terminal illness. The website proudly boasts, “Anyone can be a carer, at any time.”

Theoretically, I ticked all the boxes of a carer. I was regularly taking care of my grandparents — assisting with nightly medications, preparing hot water bottles for heat therapy, pushing my grandmother’s wheelchair, and offering up a time to keep my grandparents company. Regular household work that did not feel like a chore to me.

Perhaps for this reason, I felt uncomfortable donning the title of “carer.”

Surprisingly, I was not alone. A 2014 study on “hidden carers” in the UK – those doing the work of carers but avoiding the title so as not to officiate their role – revealed that carers are reluctant to identify with the label because they do not consider caring to be legitimate “work.”

I too felt the same way. As a South Asian woman, the expectation that children will tend to their elderly relatives is intrinsic to my culture. The social responsibility to care for elders takes precedence. Of course, this expectation is usually gendered, which can pose as problematic for women who do not see themselves in a caretaking role. I am lucky that in my case, gender did not obligate me to care for my grandparents. To put a label on my actions would be to reward myself for simply carrying out a generational duty of looking after my elders. This felt wrong.

The study also revealed that a deterrent to embracing the title of carer is the belief that it will weaken the self-perception of the cared-for. In other words, this is an attempt to preserve their autonomy. Unfortunately, it is a sad reality that those who are cared for feel like a “burden” to their family. My grandmother, for one, is difficult to convince. My grandmother does not miss any chance to refuse the aid of a wheelchair because to her,  limping in pain is much better than “inconveniencing” others. Portraying myself as a carer who is endowing favours on her will only destroy this imagined sense of confidence she has in her own strength.

The self-belief of being a burden is further compounded by the structural ableism and ageism that riddles our society, reminding individuals with disabilities that the outside world is not built for them. People’s impatience towards the elderly in public spaces and the unwelcome looks of sympathy towards wheelchair users are ugly realities. More broadly, the Australian government’s intransigence towards providing cheaper healthcare alternatives for foreigners, and the negligence of health insurance providers to insure those above a certain age bracket are further schemes made to promote societal exclusion.

Ultimately, the biggest and least justified reason why I do not associate with the title “carer” is because of internalised guilt. Living away from vulnerable family members that require constant care means that there is a gap in familial duty that remains unfulfilled. Internalised guilt also comes in the form of dissatisfaction with the care you do provide. The idea of not doing enough, letting loved ones down, or not being able to alleviate the pain they feel haunts the peripheries of most carers’ experiences.

Of course, carer guilt is dangerous. All people who are caring for others are making a difference, at some level or another. Whether they choose to identify with the title of “carer” or not is a matter of personal choice. However, it sure does help. Accepting your role as a carer opens a world of tailored support services and helplines that you are more likely to reach out to. Carers can access support from Carer Gateway, Carers NSW, the NSW Health Department, Carers Australia or the NSW Carers Advisory Council.

Caring is an emotionally loaded experience and, as with most experiences in hindsight, the good outweighs the bad. Caring gave me a kind of gratitude for my own health that I had not previously felt. In the end, you reap the rewards of your care with the warm smile of your loved ones, realising that they appreciated your efforts all along. And that makes all the difference.