Mental health awareness: Four confessions of a care-giver

OCTOBER 7 — From news reports, the rate of people suffering from mental health issues in Malaysia is said to be rising every year.

For schizophrenia alone, the Health Ministry has reported that one in a hundred Malaysians is afflicted. As someone who has spent the better part of the last six years caring for a mentally ill person, I can sadly confirm the reports that mental illness goes way beyond just the person afflicted.

It hits families and communities as well, and it hits them hard.

My loved one’s symptoms include paranoia, hearing voices and extremely erratic behaviour. For other patients, there may be a myriad 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 you go through as a care-giver.

Thus I hope I can speak for some care-givers with my four confessions below.

I’m sure I’m not saying anything new to them, in particular, but I do hope to give some insight to the people who cross paths with those of use who are care-givers and their affected loved ones.

So, to kick off, the first confession of someone caring for a mentally unwell person (surprise surprise):

1. I’m very tired

Can’t explain this. Even trying to elaborate drains me.

If you have friends presently caring for a mentally ill family member, it helps to remember this. A care-giver is, to a very real extent, also affected.

2. I’m very grateful

Many, many people have offered their help and support over the years. It doesn’t matter if these kind folks “understand” me or the situation or not.

To a care-giver, this is precious: To know that there are people around to help “contain the blast” when it occurs.

Because the thing about caring for someone with mental illness is that the future becomes utterly unpredictable and scary i.e. you can’t tell what the person may do next.

Slightly more than a year ago, I managed to get my loved one 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 loved one and the organisation involved).

I frankly do not know how I emotionally survived this incident (one of about four or five a year!), but I know that without the constant encouragement and moral support of many friends and extended family it would have 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?

We’re just not there yet.

3. I have ‘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.

Put simply, the very first nasi lemak you tasted probably scored at 10, but the 56th one you ate would get a seven 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? (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/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!

Six years later, my spirit is different. Whenever people tell me of this treatment or this new doctor or this new “healing experience”, I 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 ill — talk about “cures” like it’s the best thing since sliced bread and they cannot understand why the care-giver or the family seems way less enthusiastic than them.

It’s like a new driver wondering why the 50-year-old Grab driver doesn’t enjoy being on the road as much as him.

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 care-giver 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 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 he saw a dying kitten on the road and concluded 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.”

If you’ve never heard a weekly declaration that Justin Trudeau paid her a visit in KFC last Wednesday, you will never grasp why just “forcing her to seek therapy” will not only be unfruitful, it will also be counter-productive.

Just in case my message isn’t clear: The absolute worst thing you can do to a care-giver 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 care-giver yourself.

Dedicate some (or a lot of) time towards being with the person.

Listen to the person. Talk to him.

Live with and try to see the world through their eyes.

Offer financial support.

Offer to help the schizophrenic with her bizarre projects.

Feel the frustration in yourself as you’re hit (time and time again) with the certainty that logic and reason no longer work.

Then you may “get it” as to why long-term care-givers look at potential “cures” and “solutions” very differently from you.


4. I’m coping by learning a new ‘language’

Ask those who know me. I’m generally someone who’s very argumentative, who prides myself on the use of logic and critical thinking, and so on.

But after so many years of living with my schizophrenic loved one, it has been humbling to know that such tools of rationality are severely limited.

In fact, I see now that one of the main reasons why I myself was on the verge of breakdown was because I could never accept that my schizophrenic loved one was unable to deal with logic and reason.

She was criss-crossing between our world and a world of her making, and in this strange world of hers, a new language was required.

Thus, I’ve learnt to say to her that, yes, maybe the Mossad is stalking the restaurant but you heard that the Egyptians are talking to the Israelis so, rest assured, you can eat your mee goreng mamak in peace.

I’ve had to tell her that I understand a tsunami may hit the mall at Kota Damansara, but don’t worry you have two helicopters on standby so, please, you don’t have to cancel shopping this afternoon.

Maybe society as a whole needs to learn to speak anew to those who think in entirely different ways from the norm. Maybe we should stop immediately relying on pills and shots and — God forbid — electric shocks.

The above is at least one lesson which a schizophrenic can teach us. To roll with the world instead of trying to mould it into our image.

Logic will not work with a mentally ill, but I can tell you this: Love does.

A mentally ill person still knows who loves them, and they still try hard to show others (especially the care-givers) they still love them.

This is one of the most heart-breaking yet beautiful things the past six years have taught me, that deep down my schizophrenic loved one is still “there” somehow, still loves her family as much as I ever could and still reaches out to us.

That’s why if a schizophrenic person tells you she’s afraid of taking pills which shut down her mind or, worse, being put into a mental asylum, in the name of all that is goodness and compassion please listen to her. Please take her seriously.

As a care-giver, 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.

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