Putting your life on hold while a parent fights for theirs

I almost lost my father again. It’s happened countless times, to be honest.

I don't talk about my father's illness that much. I don't talk about how watching my father being sick for such a long time really affected my childhood, adolescence, and now, adulthood.

I never talk about how much seeing him fight for his life broke my heart and is still a deep place of pain for me.

Every time I leave the hospital, which became his second home for almost 20 years, I wanted to break down because I always knew it could be the last time I saw him.

I hardly ever speak about my family's struggles, mainly how I, an only child, deal with this. I never liked being cracked open, but they say that's how light shines through.

When I was six, my father became chronically ill. With diabetes came multiple health conditions, such as heart failure and chronic kidney disease, which led to him eventually losing both his legs within two years.

Throughout my whole life, I do not have any memories of my father being healthy and well. The earliest memories I have of him were the countless hospital visits and me holding on to one of his T-shirts while crying myself to sleep every day because I missed him when he stayed at the hospital.

His illness made it hard for him to hold down a job, and the once successful hotel manager had to contend with being unemployed.

My poor mother not only became the sole breadwinner, but she was also a full-time caretaker to her sick husband while trying to raise her only child.

Growing up with dad

From a young age, I knew that my father was ill, but I never truly understood what was happening behind the scenes.

As a young girl, I watched as he survived a heart attack and several other heart complications, received countless treatments for his wounds, underwent multiple procedures, and eventually lost his legs.

I remember seeing my mother go through some of the most challenging moments in my life and thinking, "Wow, I would never be able to care for someone like that."

My dad's situation became worse when I was a teenager. Hospital visits became more frequent, and he constantly had infections that were hard to manage.

I knew it was bad, but I could still not fully comprehend the severity of the situation. My method of coping was just to be quiet and withdrawn.

I wanted to have a normal life, like most of my peers. I wanted to be more involved in extra co-curricular activities but didn't have the energy to.

None of my friends in school knew what was going on behind closed doors. How do I start a conversation and say, "Hey, my dad's in the hospital getting surgery as we speak?"

Everyone just thought I was a student disinterested in school. Teachers often interpreted my defiance as being lazy and uninterested, but I did not understand how to cope with my pain.

I did not want to admit my situation was different. I wanted some semblance of an ordinary teenage life, but my family's needs were overwhelming, and I felt powerless.

Putting food on the table

Despite this, my parents always did their best to ensure I was well cared for. Even when they had nothing, they gave me everything within their control.

I was lucky enough to be given the opportunity to learn music and given book after book that nurtured my love for reading.

Through all of this, I still felt alone. I would cry myself to sleep at night and think, "No one understands."

In 2015, my father lost one of his legs due to sepsis; in 2017, he lost his other leg. Those years were some of the most painful and most demanding times in my life. I went from being a daughter to a parent in the blink of an eye.

It is hard enough being a child to a sick parent but needing to be a full-time caregiver was not something I'd ever thought I'd have to do in my late teens to early 20s.

To ensure we had food on our table every day, my mother had no choice but to leave me at home to care for my father while she went to work. My father was immobile during that time, so I had to care for him as though he were an infant.

The roles in my house had to be reversed, and I don't think I was fully prepared for this new family dynamic. I had to do complex tasks because there were no other options.

It was not easy, and he always apologised to me as I tended to him, though I'd reassure him that this was not his fault.

I tried putting on a brave front in front of my father, not wanting him to feel worse than he already did. But the reality of it was that I was struggling, emotionally and mentally, wondering how long more I had to endure this.

The strange combination of tasks mixed with constant uncertainty creates a level of anxiety that is impossible to describe. I have to applaud anyone who does this as a career.

Light at the end of the tunnel

When my father recovered from his second amputation, things were finally looking up for my family. He stopped falling sick as often, and I was able to enrol into college.

Seeing how things were for me in high school, I decided to turn a new leaf and make the most out of my college life and truthfully, it was an enlightening experience for me.

I tried to be as involved as possible, taking on different leadership roles and making connections while at it. I discovered my greatest professional and personal strengths.

I gained more confidence in myself and my abilities and finally felt like I was coming up in life.

However, it was short-lived. This year, just as I thought my family was finally seeing the light at the end of the tunnel, things started taking a turn for the worse.

As soon as I joined the workforce, my father's condition started falling apart again. He had breathing difficulties and an infected stump that forced him to reside in the hospital for weeks.

As much as I did not want it to affect my work, I had no choice but to step back and be the daughter my father needed.

I worked hard to get a placement at a company I've always dreamt of working in, but it looked like things were not working out in my favour. I could not help but wonder how my father's situation would affect my job.

I wondered if my bosses would see this as me being an unreliable worker, and if I got let go, would my future employers think the same way?

One of my biggest fears in life is to be seen as unreliable, and I felt as though that was all I was.

This took a severe toll on my mental health, the stress I was feeling manifested into physical sicknesses such as stomach aches and vomiting, and I didn't know how to cope with this turmoil any longer.

Emotional rollercoaster

I wish I had other things to stress over. Some days, I found myself desperately envious of my friends' daily stresses of, "Where should I travel next?" or "Can I afford to pay rent at that beautiful apartment?"

It all sounded so much better than "Will this month's blood test results show that his kidneys are deteriorating even more?" or "Do we have enough money to cover the cost of his heart medications next month?"

It's an emotional rollercoaster to see your father decline little by little. I always compare it to water torture because it's like drip by drip they start slipping away.

Sometimes it's just exhausting, and you want to let go and be their child again.

One of the things I have tried to do gives him the opportunity to do that. He's still my father and has the ability to give. I think that's a human need.

When I'm tired and need advice about something, I'll just go up to him and share what's on my mind. He'll say, "Don't worry about it too much. You'll cross the bridge when you get there." He'll still take on that role.

Most people in their 20s decide to leave the nest and venture out in the hopes of being independent and finding their place in the world.

But I've decided to live at home and be that support my parents desperately need. It is both a blessing and a curse to be this person for my parents.

I'm reminded daily that they won't be here forever and knowing that leaves me feeling gutted. But my relationship with them has changed drastically over the past few years, and my role as a daughter has evolved into a deep friendship.

The worry that I have for them never went away. Their physical health and general well-being are on my mind every day.

Being a caregiver

Caregiving at this age comes with a great deal of daily acceptance. Accepting the unacceptable, accepting that my father may never be able to do usual fatherly things for me, like walk me down the aisle.

His illness and my sudden role as his caregiver shone a spotlight on the importance of being present in the here and now.

Growing up faster than anybody my age, I've learned that I'm a lot stronger than I thought I was. I am sometimes shocked at how much I can really handle when push comes to shove.

Being in this situation has also pushed me to be the kind of person who shows up for others even when a situation feels shaky and uncertain.

If there's one thing I want people to take away from my father's story is his grit to keep moving forward despite the odds against him.

Grit is defined as courage and resolve, the strength of character. My father is the definition of grit; he is the most courageous person I have ever met.

Yes, I may be biased because I am his only child, but he really is a man of such strong character and integrity, and I am proud to be his daughter. - Mkini

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SHARYL PRIYANKA SELVARAJ is an intern with Malaysiakini.