Trials and tribulations living with a mentally-afflicted loved one

  • People
  • Sunday, 15 Nov 2015

A first-person account of how life is living with a daughter with schizophrenia. Photo: AFP

In conjunction with World Mental Health Day 2015, the Malaysian Mental Health Association organised an essay-writing competition for those with mental health illness and their caregivers.

The main aims of this competition were to educate and create better awareness of mental illness, promote early detection and treatment, and better acceptance of mental illness, as well as destigmatise such conditions.

Fit for life will be publishing the top three entries over the next few weeks.

This week, we present the essay by CSK, which won the first prize.

You can read the second and third prize winners' essays here.

Where do I begin my story? E is the eldest of my three children – hardworking, intellectual, obedient and responsible.

During my two decades of working life, | relied on her to look after her two younger siblings as they stayed with my in-laws on school days. At home, during weekends, she was also my able assistant housekeeper, helping with household chores.

From primary school right until her early (out-of-state) university years, E had been a role model to her sister and brother – with her commendable grades and exemplary character.

However, things changed catastrophically when she was stricken with schizophrenia within a month of starting work upon obtaining her diploma.

It began with her having sleepless nights, rambling non-stop, re-arranging her room furniture and rummaging, plus packing her belongings to leave.

At first, we were ignorant of her actual state of mind, thinking that she was suffering from stress at work, and perhaps, rebelling against her disciplined upbringing.

The circumstances worsened with her incoherence, including verbal abuse (at me) in response to our concern, and written notes accusing me of all sorts of outrageous behaviour.

Initially, my husband and I tried sending her for a counselling session during which she was “normal”, but she lashed out at us in the car en route home.

Finally, we had to trick her into visiting a psychiatrist, who, upon witnessing her behaviour, decided that she be warded right away.

That was the first of many mental ward admissions that my first-born had to undergo for the next eight years. In fact, having her hospitalised was our only resort whenever she had a “breakdown” as it was impossible for her to take medication.

Throughout the time, her relationship with family members suffered.

As her sole caregiver (fortuitously, I was unemployed at the time, having quit the rat-race earlier), I was her only ally despite being her “punching bag” whenever she was in her psychotic phase.

Those were years of upheaval following E’s diagnosis, when l was kept on my toes worrying about her well-being, distressed over her delusionary days, as well as dreading the drama involved in warding her.

My only respite came once she was warded as I could then rest – with her getting professional care, and I looked forward to visiting our (post-medicated/pleasant) daughter.

Ironically, and remarkably, through all this, our girl showed her fortitude in holding (albeit briefly) a number of jobs, which she applied for upon discharge from hospital.

So strong was her determination to improve her academic qualifications, she even quit working to pursue her degree course, graduating belatedly against all odds, the oldest one in her batch.

Thankfully, I learnt to manage E’s many mental meltdowns, which invariably ended with (week-long) hospital stays – except for her last one, circa 2011/2012.

That particular episode was the most devastating for both caregiver and patient, as well as family members.

It happened during a period of significant events: her graduation (convocation); her two (adult) family outings, and the death of her paternal grandparents within six months of one another.

The situation deteriorated when she was simultaneously scammed of her (hard-earned) savings via an online acquaintance.

This time, she had the tables turned on us – by initiating her ward admission through lodging a police report!

Then, while hospitalised, she often turned “rogue”, constantly upsetting the nurses, and even, the doctors (whom she used to respect).

Eventually, after months of discharges/re-admissions, during which she created havoc at home, we were forced to institutionalise her.

Despite my (and her vehement) initial misgivings, having her stay at the nursing home heralded the turning point in E’s long drawn-out battle with her angst-ridden ailment. After three months of living with fellow internees, following a daily routine of medication, counselling and social activities, she acquitted herself admirably, totally transformed.

It has been almost three years since E’s return to normalcy. She has been working for nearly two years now. Her problematic past seems to have been forgotten as she strives to make up for lost time. She has adopted a cheerful, laid-back disposition and healthy (daily) schedule.

Meanwhile, the rest of the family have slowly but surely accepted her back to the fold, including my two other grown-up children who are leading their own lives now.

As for me, my perseverance has paid off – I am rewarded with a “born-again” daughter, as well as a close confidante-cum-travel companion.

The trials and tribulations of living with a mentally-afflicted loved one was actually a blessing in disguise for me. Firstly, I have become more health-conscious and follow an exercise routine, a no-no during my younger days.

Secondly, I have become more open-minded, patient and positive through countless times of crisis management.

Thirdly, those ward visits during which I met psychiatric patients (from teenagers to elderly folk), plus reading up on the illness gave me an insight on the fragility and reality of mental health in our society.

Furthermore, I am consoled by the fact that schizophrenia – a most severe mental disorder – can be controlled by proper lifestyle, regular treatment and right attitude (E is living proof of this).

Naturally, love and moral support play a vital role.

Sadly, the social stigma attached to the illness is still strong, especially in the corporate world of employment and insurance.

However, I am optimistic that with more awareness and education, this much-maligned malady can be regarded like other chronic conditions while its sufferers face no prejudice in rebuilding their lives.

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