Sharing some insights into caring for a loved one with mental health issues

Mental health issues in Malaysia are increasing annually, with schizophrenia affecting one in a hundred Malaysians and significantly impacting caregivers and communities.

Caregivers often face fatigue and stress, valuing any support from others despite the unpredictability of mental illnesses challenging organisational environments.

Over time, caregivers can become less enthusiastic about treatments due to experience, but love remains a crucial form of support for those with mental illnesses.

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.

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马来西亚的精神健康问题逐年增加，每100个马来西亚人中就有1人患有精神分裂症，这对护理人员和社区造成了重大影响。

照顾者常常面临疲劳和压力，尽管精神疾病的不可预测性给组织环境带来了挑战，但他们仍然非常重视来自他人的任何支持。

随着时间的推移，由于经验的积累，照顾者可能会对治疗失去热情，但爱仍然是精神疾病患者的重要支持形式。

10月13日——各种新闻报道告诉我们，马来西亚患有精神健康问题的人数逐年增加。

仅精神分裂症一项，卫生部几年前就报告称，每100名马来西亚人中就有1人患有此病。

作为一名花了近 11 年时间照顾精神病患者的人，我可以证实，精神疾病的影响远远超出了患者本人。

它也会影响家庭和社区，而且影响非常严重。对于精神分裂症患者来说，情况尤其艰难。

我已故妻子的症状包括妄想、幻听和极度反常的行为。其他患者还会出现许多其他症状。

然而，比眼睁睁看着自己关心的人“消失”在妄想和语无伦次的迷雾中更糟糕的事情只有一件事：那就是意识到很少有人理解照顾者所经历的压力和痛苦。

因此，我想在下面分享一些“内部信息”，以便让那些与这些护理人员及其受影响的亲人有接触的人们有所了解。

照顾者们都很疲惫

我无法解释。那些年里，就连试图详细阐述这件事都让我精疲力竭。

如果你有朋友目前正在照顾患有精神疾病的家人，记住这一点会有所帮助。

照顾者们经历了太多的挫折、悲伤和绝望，他们通常都濒临崩溃。

每当我们与照顾者谈论他们所照顾的人时，记住这一点都很有帮助。

护理人员心存感激

在我妻子在世的这些年里，有许许多多的人向我伸出援手，给予我支持。

这些好心人是否“理解”情况并不重要。对照顾者来说，这才是最宝贵的：知道在危机发生时有人在身边帮忙“控制局面”。

因为精神疾病的特点是未来变得完全不可预测且令人恐惧，也就是说，你无法知道精神病患者下一步会做什么。

我记得在 2017 年，我成功地帮我妻子在当地一所教育机构找到了一份会计主管的工作。

第一天，人事部门就向我投诉说她拒绝签署某些表格。第二天，她的主管打电话给我说，她根本不听指挥，而且几乎什么事都要争辩。

第四天，我替她辞职了；然后不得不忍受双方（我的妻子和相关组织）长达一周的怨恨和威胁。

坦白说，我不知道自己是如何从这次事件（一年大概三四次！）的情感冲击中走出来的，但我知道，如果没有众多朋友和亲人的不断鼓励和精神支持，情况会糟糕得多。

因此，疾病带来的种种不可预测性，与关心病患的人们所展现出的可预见的善良和同情心相得益彰。而这确实大有裨益。

基于此，企业领导者或许需要扪心自问：我们的企业是否有能力应对精神障碍患者？我怀疑我们无法做到。

马来西亚公司可以服务于残疾人士、幼童、老人、古怪人士、来自其他文化背景的人等等，但是精神疾病患者呢？

事实上，办公室高压、欺凌（包括真实的和人们感觉到的）、截止日期、工作量等因素可能会使情况变得更糟。

照顾者逐渐出现“精神治疗疲劳”。

在经济学中，有一个被称为边际收益递减的概念或“规律”。

从技术上讲，它指的是某种商品或所获金额的价值或“享受”如何随着时间的推移而下降。

简单来说，你吃的第一份椰浆饭可能得了 10 分，但你吃的第 56 份最多也就得了 7 分。

或者，回想一下你第一份工作赚到的第一笔100令吉；感觉是不是很棒？现在想想你工资单上的最后一笔100令吉，我们当中有多少人会为此感到高兴？（不要同时发言）

对于患有精神疾病的亲人的治疗和疗法，也会发生类似的情况。

在第一年，治愈病人（并使其恢复“正常”）的“急切”或动力是疯狂的、坚定的，几乎是痴迷的。

我记得头一两年里，我脑子里一直有个疯狂的想法：要是她去看医生，吃药，康复，我们就能恢复正常生活了。Kow-teem！

多年以后，照顾者们通常会改变想法。

每当人们跟他们谈起这种疗法、这位新医生或这种新的“疗愈体验”时，这些护理人员就会感觉自己就像一个吃了七年巨无霸的人——很久以前，这可是美味可口、令人垂涎的超级组合，双层肉饼里夹着鲜嫩多汁的蔬菜和香喷喷的面包。但如今呢？它只不过是个普通的汉堡而已。

同样，许多好心人——尤其是那些没有与智力障碍者一起生活或工作过的人——谈论“疗法”就像谈论切片面包一样，他们无法理解为什么护理人员或家人似乎远没有他们那么热情。

这一点尤其重要，因为大多数“精神类”药物的主要作用是抑制患者的大脑活动。它们完全是化学作用，不涉及任何精神关怀。

更糟糕的是，许多人往往会评判和责备照顾者没有为患者“做得更多”。说来也怪，我对此并不感到惊讶。

如果你从未和这个人坐在一起，连续几天甚至几周倾听他或她讲述邻居公寓里的奇怪鬼魂，你就永远不会明白“让这个人吃药”这件事有多么复杂。

如果你从未亲眼目睹一个人因为在路上看到一只奄奄一息的小猫而难过数月，并得出结论认为这只小猫能让死去的叔叔复活，那么你永远不会明白为什么“跟她解释一下为什么薄饼治不了癌症”是不可能的。

如果我的意思还不够清楚：对照顾者来说最糟糕的事情就是责怪他或她导致精神病患者持续恶化。

即使你是对的，你也是错的。对抗这种漠不关心和妄下评判的态度的最好办法，就是自己先像个照顾者一样去对待他人。

抽出一些（或很多）时间陪伴病人。

倾听患者的心声，并与他/她交谈。

与患有双相情感障碍的女性、患有精神分裂症的男性等一起生活，并尝试从他们的角度看待世界。

那些从未与智力障碍者一起生活或工作过的人，需要体会到那种一次又一次被逻辑和理性所否定的挫败感。

这样我们或许就能“理解”为什么长期护理人员看待潜在的“疗法”和“解决方案”与我们截然不同了。

不过，好消息是，虽然逻辑对精神病患者不起作用，但爱却可以。

智力障碍者仍然知道谁爱他们，他们仍然努力向他人（尤其是照顾他们的人）表达爱意。

作为一名照护者，我认为没有什么比尽你所能地表达爱意、陪伴他们更重要的了。归根结底，这或许才是他们需要的唯一“疗愈”。

* 这是专栏作家的个人观点。

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