OCTOBER 13 — In various news reports, we are told the number of people suffering from mental health issues in Malaysia rises every year. 

For schizophrenia alone, the Health Ministry reported a few years ago that one in a hundred Malaysians are afflicted. 

As someone who spent the better part of 11 years caring for a mentally ill person, I can confirm that mental illness goes way beyond merely the person afflicted. 

It hits families and communities as well, and it hits them hard. With schizophrenia it’s especially tough. 

My late wife’s symptoms included paranoia, hearing voices and extremely erratic behaviour. For other patients there will be a myriad of other signs. 

However, there is only one thing worse than seeing someone you care about “disappear” into a haze of delusions and incoherency: Realising that very few people understand the stress and pain a caregiver goes through.

So I’d like to share some “inside information” below to provide some insight to the people who cross paths with these caregivers and their affected loved ones. 

Caregivers are tired 

Can’t explain this. Even trying to elaborate drained me during those years.

If you have friends presently caring for a mentally ill family member, it helps to remember this. 

Caregivers have been through so much frustration, sorrow and hopelessness that they’re usually one or two steps from tapping out.

It helps to remember that whenever we interact with a caregiver about the one they’re caring for.

Caregivers are grateful

When my wife was still alive, many many people offered their help and support over the years. 

It doesn’t matter if these kind folks “understand” the situation or not. To a caregiver, this is precious: To know that there are people around to help “contain the blast” when it occurs. 

Because the thing about mental illnesses is that the future becomes utterly unpredictable and scary i.e. you can’t tell what the mentally ill person may do next.

I recall in 2017, I managed to get my wife a job as an Accounts Executive in a local educational institution. 

On the first day itself, HR complained to me that she refused to sign certain forms. On the second day, her supervisor called me to say that she is simply incapable of following orders and would, in fact, argue about almost everything.

I resigned on her behalf on the fourth day; and had to endure about a week’s worth of grievances and threats from both sides (my wife and the organisation involved).

I frankly do not know how I emotionally survived this incident (one of about three or four a year!) but I know that without the constant encouragement and moral support of many friends and extended family it would’ve been much worse.

Thus, the sheer unpredictability resulting from the illness is matched by the predictable goodness and compassion of people who care. And this helps a lot.

On this note, perhaps business leaders need to ask if our corporations are able to cope with the mentally disturbed. I suspect that we can’t. 

Malaysian companies can cater for the physically disabled, the very young, the very senior, the eccentric, people from other cultures, etc but the mentally ill? 

In fact, the high levels of office stress, bullying (both real and perceived), deadlines, workload, etc probably makes things worse.

Caregivers gradually get ‘mental treatment’ fatigue

In economics, there’s this concept or “law” known as diminishing marginal returns. 

Put technically, it refers to how the value or “enjoyment” of a certain good or amount earned falls over time. 

Quite simply, the very first nasi lemak you tasted probably scored at 10, but the 56th one you eat would get a 7 at best. 

Or, go back to the first RM100 you earned in your first job; it felt amazing, didn’t it? Now think about the last RM100 in your pay cheque, how many of us feel great about it? (Don’t all speak at once).

Something similar happens when it comes to treatments and therapies for our mentally ill loved ones. 

In the first year, the “rush” or drive to cure the person (and bring him or her back to “normal”) is frantic, determined, and almost obsessive. 

I can recall the one furious thought rushing through my head during the first one or two years: If only I get her to see this doctor, she takes the medicine, she gets well, we go back to status quo. Kow-teem!

After many years, caregivers usually have a change of heart.

Whenever people tell them of this treatment or this new doctor or this new “healing experience”, these caregivers can feel like the guy who’s been eating Big Macs for seven years i.e. long ago this was a tasty mouth-watering super-combo of a double meat patty packed with juicy veggies and tasty bread. But today? It’s just a burger.

Likewise many well-intentioned folks — especially those who have NOT been living or working with the mentally challenged — talk about “cures” like it’s the best thing since sliced bread and they cannot understand why the caregiver or the family seems way less enthusiastic than them. 

This is all the more pertinent when a majority of “psychotic” drugs primarily involve shutting down the patient’s brain. It’s entirely chemical; there is no soul care involved.

Furthermore (and worse), many people tend to judge and blame the caregiver for not “doing more” for the one affected. In a strange way, I’m not surprised.

If you’ve never sat with the person and listened for days and weeks to him or her talking about strange ghosts in the neighbour’s apartment, you will never understand how simply “getting the person to take his medicine” is anything but simple.

If you’ve never spent months seeing the person get upset because she saw a dying kitten on the road and concluding that the little cat will bring a deceased uncle back to life, you will never understand why it’s impossible to “just explain to her why popiah can’t cure cancer”.

Just in case my message isn’t clear: The absolute worst thing you can do to a caregiver is to blame him or her for the on-going condition of the mentally ill.

Even if you’re right, you’re wrong. The best antidote for such a nonchalant and judgmental attitude is, simply, to behave like a caregiver yourself.

• Dedicate some (or a lot of) time towards being with the patient 
• Listen to the patient. Talk to him or her.
• Live with and try to see the world through the eyes of the woman with bipolar-disorder, the man with schizophrenia, etc. 

People who’ve never lived or worked with the mentally challenged need to feel the frustration of being hit (time and time again) with the certainty that logic and reason no longer work. 

Then we may “get it” as to why long-term caregivers look at potential “cures” and “solutions” very differently from us.

The good news, though, is that whilst logic will not work with a mentally ill person, love does. 

A mentally challenged person still knows who loves them, and they still try hard to show others (especially the caregivers) they still love them. 

As a caregiver, I suspect nothing may be more important than showing whatever love you can and being with them. In the final analysis, this may be the only “cure” they need.

* This is the personal opinion of the columnist.