IT doesn't really take much for one to be haunted by certain images or memories; and I have enough of those tucked away somewhere. Other than certain recollections of incidents while growing up, the ones that linger the longest with me are memories of people who were ill and in the last stages of their lives. Among them are my late parents, several relatives, and close friends.
It was one thing to know they were terminally ill, and quite another to be there for them — and with them — until those last moments. I remember rushing to the hospital emergency rooms in panic, and being unsure of what to do, what to ask and what to expect.
I could see them waning and weakening. There were days when I could see them battling their illness with all the energy they could muster. There were also days when they told me that they were ready to throw in the towel and call it quits, but at the same time, would do anything to keep you happy. So, they end up enduring more uncomfortable treatments and painful procedures because you asked them to.
At times like these, you won't know where to draw the line between being selfish and selfless. What's scarier — them going or you being left behind? Who's more scared here?
This is essentially what caregivers find themselves facing. Of course, there'd be certain familiar patterns, but suffering the loss of a loved one will always leave you feeling gutted.
In the time you're there with them, being able to empathise with your ailing loved one makes your tasks a bit easier. However, remember that there are two sides to the situation in caregiving — the patient's (care receiver) and the caregiver's.
KEEP YOUR COOL
As a caregiver, you may not be able to totally understand the anguish or pain of the person you're caring for. But you can try to see their point of view and understand what's going on. What's true for you isn't always what's true for them.
This is especially so when the person you're caring for has some form of dementia like Alzheimer's disease, which is the most common type of dementia. One of the most challenging parts about being a caregiver to a loved one who has become mentally incapacitated is keeping your cool.
When they start to lose their memory, they would ask you the same question again and again. You might be alright with this for the first five times, but after the 10th or so, and over several times a day for years, even you'd think you've lost your mind.
I remember when my late aunt went through this. In the earlier days, when she was still aware of things — including repeating herself — she'd laugh it off and say, "Oh, this is what happens when you become old."
Many months later, this behaviour continued but she no longer remembered whether she'd asked the same question before. She ceased making excuses, and neither did she laugh it off.
The disease progressed over a few years and it finally robbed her of her most basic function of gag reflex and the ability to swallow. After a few months of being fed by tube, she finally succumbed to stroke.
GO WITH THE FLOW
In those few years and with the guidance of the psychiatrists that we saw to keep tabs on her condition, we learnt many things. In a nutshell, it was about seeing the person that she was and the person that she'd become, devoid of memories that link us to her.
She could no longer remember us by name, but that didn't mean that we should forget her because we still knew her. Nor should we take it personally. It wasn't about us.
Despite not being able to connect complex thoughts and consequences, it didn't mean that we could talk about her right in front of her as though she didn't matter. In her lucid moments, she could understand and feel hurt.
Her reality was totally different from ours. She lived mostly "inside her head" where she could flit back and forth from one time zone to another — from a child, to a young adult and so on. It's hard to keep up.
Don't try to correct her to the present time or to your reality, they told us. It's futile and exasperating. The best thing is to just go with the flow. We were told to keep her active. We discovered she enjoyed music, especially during festive seasons when songs were so cheery.
They brought many happy memories for her. We'd never know what those memories were because she couldn't tell us, but we knew she was happy. Recalling those moments never fails to bring back bittersweet memories.
Those years weren't easy and they weren't devoid of tears and frustrations. That said, I wouldn't trade it for anything because it keeps me sane, sensitive and grounded, appreciating what really makes us human.
[The views expressed in this article are the writer's own.]
Putri Juneita Johari volunteers for the Special Community Society of Ampang. She can be reached at [email protected].
