The job of a caregiver is never easy.

ONE of the sad things about being a caregiver is that you can’t help everyone all the time. Not only do we not know everything (as no one really does), sometimes there’s only really so much one can do, earnestly and sincerely.

I’ve been a caregiver for nearly 30 years now for my son, my late parents, a few relatives and friends. They all had different illnesses and situations. While there’s a common thread in terms of general caregiving, a lot depends on the individual’s personality too. Time spent with them can be filled with gut-wrenching moments as well as elation, the sort you’ve never known before. Their joy becomes your joy and their sorrow becomes yours too.

What’s important to remember is to not be swallowed by the situation. You need to draw a fine line. You must also remember your own goals and purpose so that you don’t get easily overwhelmed when the situation spirals out of control as your loved one deteriorates. You have to remember your position as the able person to help the ailing one wherever and whenever you can.

Your loved one may be helpless but you don’t have to be. That’s where you have to summon your energy and resources to help both your loved one and yourself. In addition, you need to have your own routine too so you can attend to your own needs and obligations such as your family and work.

The three main things you need to get enough of would be adequate rest, proper food and exercise. It sounds basic and simple, yet when you’re doing the hospital runs or when your loved one is critically ill, getting these can be near impossible. You’d be so tensed and stressed out that rest may not come so easily. So you get caught in a vicious cycle.

NEVER EASY

The job of a caregiver is never easy. Those exhausting hospital episodes can range from a few days to months, only to have it repeated over several years. At some point in between, however, there would be days when your life appears normal.

Frankly, I’d say that dealing with physical disability is so much easier than mental disability. Sometimes some people get both at the same time. Unfortunately, this is something nobody gets to choose. There are some situations that seem endlessly punishing, like when your parents succumb to illness due to ageing and possibly injury or reduced cognitive abilities such as dementia or Alzheimer’s disease.

For the caregiver/s who has to deal with their loved one’s needs and daily “banter”, it’s a challenge to do it alone. Remember that saying: It takes a whole village to raise a child? Well, it also takes a whole village and more to care for an ailing elderly who has become physically and mentally challenged.

It’s not fair to throw that statement “a parent can take care and raise many children, but a child won’t be able to reciprocate that love and care.” The situation is different, as too the levels of abilities and personalities. Dementia and Alzheimer rob everything you know and love from a person that sometimes you wonder if it’s a stranger living in your house.

Then there’s that respect and filial piety that’s been drummed into all of us — we’re not to say or reveal anything negative about our parents. Under normal circumstances, that’s fine. However, it gets really tricky when dementia sets in. Caregivers need to seek help and in doing so, must honestly share the situation with the professionals who are helping them.

By reporting as objectively as possible how a person’s behaviour and personality have changed due to illness and dementia, the doctor would be in a better position to diagnose and prescribe medications if necessary. Doctors tend to be more sympathetic if they understand the situation.

Unfortunately, not all caregivers can bring themselves to tell it like it is for fear of judgment and retribution as well as being chastised for being disloyal.

IMPORTANCE OF EMPATHY

It’s easy for people to pass comments and even scold caregivers for not caring enough. I can only say this: Those who have been in that situation would know first-hand how difficult it is to maintain peace and balance when a person with dementia turns nasty. Sometimes they can turn downright dangerous.

Your life is no longer normal when you have to keep anything sharp under lock and key or when you have to store the cooking gas tank in your bedroom because you can’t lock your kitchen. And that’s just one insight into what it’s like to have a loved one with dementia living with you.

So before you judge a caregiver and tell them to sabar (be patient), spare some time to understand what they’re going through. If they’re not willing to talk about it, a little kindness goes a long way and would be appreciated in ways that you’d never know.

Putri Juneita Johari volunteers for the Special Children Society of Ampang. You can reach her at juneitajohari@yahoo.com

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