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The alarm goes off and my eyes open. First things first, let’s check if everyone is breathing.
Okay, next, is anyone in pain or behaving strangely?
Yes, these are my first thoughts when I wake up.
For most, your first action may be to reach for your handphone or contemplate the idea of a hot coffee.
That’s not my life. That’s because I’m a caregiver to my parents.
In fact, I’ve been doing that since I turned 16.
I’m past 40 now but it was only last year that I understood and accepted what I truly was – a caregiver.
No one tells you that you’re going to be a caregiver. It’s not a choice.
We do it for family because we Asian. Boh pian, filial piety mah.
Different challenges for different parents
I was 16 when Dad had a heart attack.
I was in school then, and all I remember was rushing to the hospital and learning new terms, like “ICU” and “triple bypass”.
Dad recovered but he had to leave work and as the only child, I got a part-time job to support my family. Dad had no insurance and we lived on borrowed funds. My mum was a housewife so no income there either. We got financial help, but money was always tight.
Then, just as suddenly, I had to learn even more new terms: “schizophrenia” and “mental illness”.
At about the same time my dad fell ill, my mum was diagnosed with schizophrenia.
I was so lost. Confused with so many questions. Unlike today, we didn’t have easy access to the Internet back in the 90s.
Now, a quick Google search gets you to the IMH website, which explains how the condition, so commonly misunderstood as “split personality”, is actually more a disorder of “split reality”.
As a result, it takes a while before people with schizophrenia seek help, and by that time, they often would have already “experienced a loss in interpersonal relationships and daily functioning at school or at work”.
I felt firsthand the loss of that relationship.
At the point where my dad needed help the most, I “lost” my mum too.
It was a very distressing period for a teenager to have to grow up so quickly and take on adult roles in the family for both parents.
Over the years, I have been to so many hospitals – IMH, SGH, TTSH – different treatments for different parents at different times.
At the hospital, I’ve learnt terms like risk vs benefits, critical vs non-critical conditions.
Doctors talk about causes, diagnoses, treatment schedules, medication monitoring, recovery plans… it’s information overload amid a need for sound decision-making.
It’s my one brain looking after two ageing people with special conditions.
Now that I’m older (and my parents too), the challenges have changed again.
We need to talk about that dread “d” word – Death.
Many of our elderly parents (Asian, mah) say it’s pantang (Malay for unlucky) to talk about death.
Trust me, getting my parents to come around to talk about it was a tough journey in itself.
I found that instead of ignoring the inevitable – talking about end-of-life plans such as how they would like their funeral to be, and saving up for what is an unavoidable expense has given me a little more power to confront their reality.
After some brutally honest conversations, my parents have come to realise that once this “business” has been taken care of, they can age with a carefree mind.
I found a link that was helpful, perhaps it might help you too.
Self-care and support
But all these wheeling and dealing, cajoling and compromise, takes a toll on the caregiver.
I’ve had to deal with the emotional and physical fatigue of showing up at the hospital to support them at different times. I’ve had to counsel them through their fears and anxiety of not knowing what’s happening to them, even while I was struggling with challenges of my own.
I’ve tried to remember how important it is to practice self-care, but it is truly a challenge when you’re a caregiver.
Even before sleeping, I deal with anxiety before I close my eyes – what if somebody needs me in the middle of the night?
I’ve have been doing all this by myself these years and it has been intense.
Yet, I know I am not alone. I have friends and family to support us. I am grateful. I do my best to go out and live a normal life.
Caregivers don’t always need time and resources from their support group. What we do need is lots of patience and understanding that we have commitments to our ‘patients’. We would never know when crisis would strike and how long it would take before we can lower our alert levels.
I’m relieved to know now that there are other caregivers out there like me. Others who know the stress we face and the resources that we require. Those who have been through the grind and want to help others.
AIC – Agency for Integrated Care supports the ageing community and there are various resources to tap on as we go forward as a nation.
At least, as a caregiver now, the tedious journey doesn’t feel so lonely. All we have to do is ask the right questions to the right people.
I’m proud that both my parents continue to live well with dignity. The journey to get us all to this point today has not been easy.
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Of course, being a caregiver doesn’t mean my life is always bleak and dreary, there are happy times too. I’ve discovered that when I practise gratefulness for these moments in life, it can be bright and full of colour.
Despite everything, I’m glad I have my parents.
The author of this letter prefers to remain anonymous