WHEN you are caring for someone who's now disabled, whether due to old age, illness, accident or they're born that way, you'll find yourself in a situation where you learn about many things as you go along.
There may be courses on caregiving that you can attend and have yourself certified, but many people actually find themselves thrown into this role by default; usually when something suddenly happens to someone they love.
You might struggle with your new role as a caregiver as you try to balance your life with your obligations. If you're still employed and have young children to care for, then you'll have this extra responsibility to deal with.
Sometimes, your role as a caregiver is only for a few months because your loved one recovers and resumes his or her life in good time. But sometimes your role can stretch into months and years because your loved one's health and condition deteriorates.
The first few weeks are usually the hardest as you adjust to your role as a caregiver. You start coming to terms with a lot of things you never thought of before.
FORTIFY YOURSELF
If your loved one is suffering from dementia and his/her condition worsens as the weeks go by, you'd have to accept the fact that you're losing the person you know and love so much.
In the blink of an eye, your loved one becomes a stranger to you, and you to them.
The person who is now in your care may not remember who you are let alone cooperate, show any tenderness or gratitude. In fact, you may be the target for all your loved one's blames and hallucinations.
This isn't only scary but also frustrating because you'd feel helpless and even guilty, thinking that you're not doing everything you can.
At this point, you need to fortify yourself mentally and physically. Learn to be kinder to yourself and learn to cope with your situation by seeking advice and help from your loved one's doctors and experts in the field.
Don't be afraid to ask for help. Even if the first person you approach can't help you, the next person might. Or they can put you in touch with someone who can. Have patience and be open about it.
What you don't want is to find yourself taking it out on the loved one in your care. It's easy to get angry and frustrated when the unexpected continues to happen.
Take, for example, questions that are repeatedly asked or phone calls that come in every few minutes asking the same thing.
This can also happen when you have a non-verbal child with special needs. They may be able to make sounds but they can't verbalise or communicate with you using words.
But their repeated behaviour can drive you nuts. Both situations are just as demanding and draining.
Remove yourself from the situation the moment you feel anger rising. Calm yourself down before going back to him/her. Learn to manage your tumultuous emotions and mental health to deal with the stress.
PATIENCE AND KNOWLEDGE
I sometimes find it hard to explain to family and friends what goes on in such circumstances. If it's something they've never been exposed to or encountered, they'll never fully grasp the situation or be that empathetic.
They might even accuse you of being impatient and intolerant. People tend to judge situations and other people according to their own experience. That in itself adds to the daily stress that you have to deal with. You start to wonder why you even bother trying to explain yourself.
There are several things you need to do to be able to continue caring for your loved one.
Patience is truly a virtue you need to have or inculcate. Next, arm yourself with knowledge, whether it's from the medical team that you take your loved one to, the Internet or friends who've had similar experiences.
By knowing more about it, you won't panic so easily or feel helpless and overwhelmed by things you don't know. When you know what to expect, you'd be more confident about caring for your loved one.
You've got to remember that you're their ally, voice and representative. Even though they may have forgotten who you are, you know who they are and how much you love them.
By caring for them from your heart, your load will feel a lot lighter than if you're forced to do it.
You'd be surprised how this is something they can sense — your sincerity will win you their trust.
They may be mentally impaired, but they still have an opinion. They can still feel hurt or happiness. Your patience, humility, sense of humour and kindness can actually move them away from the brink of oblivion.
[The views expressed in this article are the writer's own.]
Putri Juneita Johari volunteers for the Special Children Society of Ampang. She can be reached at juneitajohari@yahoo.com.