Our “Your Stories” series are submissions shared with us via email or in one-on-one interviews, for the purposes of our research and campaigns. All names have been changed (unless the use of real names was explicitly permitted by the author), and we have sought permission to publish from the authors/interviewees themselves. The opinions expressed in these posts do not represent those of AWARE.

Amy: I’m writing about my second sister, C, who with the exception of a few years when she was away studying nursing and six months or so when Mum was away, lived with our mother until she died in 2004.

There was a spell in the mid-1970s when I was still living in the family home and my boss kindly allowed me to take my leave in half days and so I was able to share in caring for Mum for a couple of months when she was unwell. So I have more than an inkling of what it must have been like for C all these years.

If not for her care, it is unlikely that my mum would have lived to nearly 89 (she died three months before her birthday).

Until her final months, Mum had only been hospitalised once, for minor surgery, other than when she gave birth to me. She was mostly pretty healthy and had an active social life after giving up the restaurant. We would joke that all she really did was move the location and then invite her friends and ours to dine for free.

Our mum had been in sole charge of the six of us children (including four daughters) since our birth father left the family sometime before September 1953.

All but the eldest, a son, had worked alongside her from time to time when she ran her restaurant. She sold the premises in 1969 or 1970 and retired.

Because C lived with Mum and because she was a nurse, the task of caregiving fell mostly on her until the last months when we had two maids to help her. That, however, did not lift the emotional burden on her.

Neither of our two sisters are particularly inclined to be caregivers. So although there were times when C felt frustrated and would threaten to move out, she never did. Instead, she found solace in religion and has become a fervent Christian.

She is the only one in the family who has never married, the price of being the most caring.

Our “Your Stories” series are submissions shared with us via email or in one-on-one interviews, for the purposes of our research and campaigns. All names have been changed (unless the use of real names was explicitly permitted by the author), and we have sought permission to publish from the authors/interviewees themselves. The opinions expressed in these posts do not represent those of AWARE.

Ria: Here are 3 big challenges that surprised me about being a caregiver.

1. The first big surprise challenge was simply the amount of work – the size of the workload. The sheer number of hours was enormous, day after day without break, for years.  I had been told it’s a lot of work but I didn’t grasp why the work was so time-consuming, and I didn’t grasp how simple tasks could take so long. For example, it didn’t occur to me that feeding somebody breakfast would require an entire hour.  That’s just for the act of feeding, not counting the time for preparing the food, cleaning up the food, and cleaning up the person who got fed. I also didn’t appreciate that this work would require my full attention, not just for the for the mechanics of the job (e.g. feeding) but also the constant emotional work (helping the other person keep calm, and helping them manage their frustration).  This workload is not brainless at all, and it was more “all-consuming” than I imagined.

2. The second big surprise challenge was how the family treated me. While I was getting a crash course in learning how hard it was, other people didn’t get it.  Even the family members I lived with, who were under the same roof and saw the care daily, always under-estimated my workload by sometimes tenfold.  For example, if they personally saw me do 1 hour per day of work, then they believed my entire workload was roughly 2 hours per day.  They never thought rationally about how the rest of the work got done. They had magical thinking. My husband was in denial about everything –  the caregiving, the infirmity, the difficulties, the workload – everything. Part of his denial was to avoid uncomfortable emotions, and to avoid accepting that a loved one needed extensive care. Part of his denial was to avoid feeling guilty that he was totally neglecting his share of this caregiving obligation.  This was his blood-relative. Part of his denial was to minimise my contributions, and to pretend that my day was filled with freedom and fun activities, so he wouldn’t feel bad.

3. The third surprise challenge of being a caregiver is that unequal roles persisted in the family for many years after the caregiving ended.  

• After inequality begins, it becomes a self-perpetuating cycle.
• There’s a lasting change in family roles.  I’m the most trusted and the least thanked person in the family.  
• The people who avoided caregiving have entered a cycle of escapism, which feeds on itself.    

One more thing: Here is a story about how my caregiving burdens went from bad to worse. There were some bad months when the caregiving role became dangerously overwhelming for me – it was round-the-clock, never allowing me to sleep, causing me serious health problems. I asked lots of people for help.  I told friends and neighbours and extended family that I couldn’t take it. My husband was suddenly more ashamed of the situation, after I told other people about it. When he felt that shame, he resolved to help me, and he pushed away everybody’s offers of support, telling them it was under control. But underneath his assurances, he was still scared of caregiving, still scared of human frailty, still unwilling to learn the real work of caregiving. It was a lie, when he said that everything was under control. It was a lie, when he said that people were already helping me. It was a lie, when he said that he was doing 50% of the work. It was a lie that he needed to tell himself to get through the crisis. But his need worsened the caregiving burdens on me.

Many families have at least one person who doesn’t want outsiders to know the truth, that the caregiver needs help. Sometimes it’s the caregiver whose pride would be wounded, but it doesn’t matter whose pride it is.  The effect on the caregiver is still the same.