September 5, 2010

MALAYSIA: When memory fades

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KUALA LUMPUR, Malaysia / The New Straits Times / Family / September 5, 2010

I, caregiver

JUNEITA JOHARI

FROM the time we could use language to communicate verbally, we have been told to mind our words, use terminology properly and also the right tone.

One slip of the tongue can make a world of difference which apologies may never be able to erase. I'm sure all of us have at times wished we could take back what we had said, more so when those whom we uttered the words to are no longer living.

What happens then when the twilight world of dementia sets in? Whether or not it is full or partial memory loss, call it “senior moments” for a lack of a better phrase, feelings are still involved.

Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment and behaviour. Often, it is a slow process of losing memory that defines the person that we are.

This is especially true amongst the elderly who have been through some sort of physical ordeal like a coma or stroke. They are fragile physically as they recover, but they are more so mentally. Most types of dementia are non-reversible and Alzheimer’s disease is the most common.

They cannot remember where they are, even who their children are. Sometimes they think they are still teenagers, about to embark on a new journey called marriage when in reality they are already octogenarians with grandchildren.

So let’s try to deal with the present. If we are caring for someone ageing and suffering from the onset of dementia, we should be armed with knowledge on how to deal with delicate situations. A healthy dose of humour will certainly take us a long way, especially for the sake of our own mental health. As caregivers, we are always put on the defensive. That is often so because they sometimes become suspicious and wary of everyone around them, especially their caregivers, and accuse them of abuse or theft.

Ask anyone who has cared for an elderly who has a “trick memory” or dementia of sorts. Almost all of them will tell you that they have been accused of being a thief or monster. It would often be about old or non-existent belongings. The patient might even complain to visitors that he or she has not been fed or well taken care.

For the caregivers, it certainly feels like a slap to their dignity. Those who hear the complaints should remember to get all the facts right before launching on a full scale attack against the caregivers.

When my late mother was recovering from her coma, she had lapses of memory. She had a tendency to repeat the same questions even though sometimes she caught herself doing so. “I just asked you that just now, didn’t I?” she would say. We would laugh it off.

There were moments too when it was not so funny, like when she asked the same question many times a day, every day. She could be obsessive about how her food was prepared and that there should be enough for everyone to eat. She needed to see a big meal spread on the table each time.

No matter what our explanations were, she would be stuck on the same track. A friend recently told me that his mother accused him of stealing and selling her precious books, and that the maid had sold all her nice clothes off for a quick buck. He said none of this was true because those clothes and books were still there in the house but stored in a different room. Because she could not see it, she thought them lost, and that distressed her.

Another friend told how her father always said they had not given him anything to eat. He just could not remember that he had eaten, thus insisting that that was why he was hungry.

So what they did was not clear up the evidence of his earlier meal by leaving the plate there, only to remove it when the new meal was presented. This method worked, and he ceased his complaints.

We should be careful about judging others in their role as caregivers. It is not an easy job.

It is so very easy to brush off a person and their needs because we are in a hurry. But then, we are always in a hurry. When we visit an aged relative whose life is brightened only by our visits and chatter, our very words and tone will be the things they hang on to when we leave, until our next visit.

That was the way it was for my parents in their last few years before they passed away; first my father, and then my mother, 16 months later. They knew how busy I was and they never demanded much from me. However, there was a time when I bumped into a friend who loved my parents just like her own. She asked after my parents and said that after she lost hers, she always made it a point to remind others to spend as much time as possible with them.

“Hug them and tell them how much you love them,” she said to me. “Because when they go, there is nothing you can do about it. Hugging what they left behind or clinging to memories of them is just not enough.”

Wise advice, I thought, as I realised that though I spoke to my parents almost every other day, sometimes nightly just to wish them goodnight, I was not seeing enough of them. I am eternally grateful to this friend because I heeded her advice.

From then on, I visited my parents more often and was more open in my conversations with them, telling them not just about me, my family and goings-on, but also asking them about their life — what they were like when they were young, what they enjoyed doing, their favourite food, childhood games, dreams, past-times, long-lost loves, friends and relatives, what they would like to do in the near future, if there was anything at all I could do for them, and with them.

You would be surprised to know how willing they were to talk. Oh, the stories they had to tell! And all they wanted was for you to humour them and indulge them with your time. They have had everything else.

I found that when you allow and encourage them to talk, gently drawing them out of the dark cocoon that beckons them into forgetfulness, they light up with joy at being able to recollect certain memories.

George Carlin once said: The beauty of life does not depend on how happy you are, but on how happy others can be because of you.”

Putri Juneita Johari is a volunteer at Special Children Society of Ampang. After more than two decades of grappling with the system, she finds that the whole experience is really just one big learning curve. You can reach her at juneitajohari@yahoo.com

Copyright © 2010 The New Straits Times Press (Malaysia) Berhad.

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