TRUE STORY: "I'm a stranger to my own mother."

PHOTOGRAPH: 123rf.com

 

“Looking back, my mum showed signs of having Alzheimer’s in 2004, at an age that’s considered young to start developing the disease. We didn’t think she had Alzheimer’s at the time; we just noticed that she began acting weird and her behaviour was changing. She became an attention-seeker, doing things like talking louder, laughing louder and interrupting conversations.

One by one, my mum started losing friends, as they found her behaviour annoying. My dad stood by her side and took care of her, but he was in denial that something was wrong. He firmly defended her, and if anyone brought it up, it was bound to explode into an argument. One of my dad’s good friends is a neurosurgeon. They had gone to a very good, prominent college together. Acting on his friend’s advice, he took Mum for an MRI. The scan showed that her brain had shrunk and was 10 years older than her chronological age. Finally, we could put a name and explanation to what was happening.

 

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By 2012, my mum had turned from a jovial, strong-willed woman who climbed the corporate ladder to someone who had only five words left in her vocabulary. Slowly, she lost the ability to go to the toilet on her own and to wash herself. At one point, she couldn’t even use cutlery to feed herself! The house became very messy and the maids we hired to help look after her kept running away. They just couldn’t put up with the mess and my mum’s tantrums.

 

A time of changes

The same year, I made the decision to quit my job. To me, it was an obvious decision – it shouldn’t have to take me long to choose between my parents and my five-figure salary. Also weighing on my mind was my dad’s recent heart failure, a close brush with death. Thank God I was near my parents’ house and could rush him to the hospital in time! He was discharged after a week but could no longer care for my mum. So with my husband’s permission, she moved into my house.

Over time, my mum’s condition deteriorated so much that she was beating me up every day and chasing me around the house. I fell in the bathroom many times, which is how I injured my back. I recovered after two months of physiotherapy, but was advised not to carry anything heavy and warned not to have anymore falls – I may not be as lucky the second time and could end up paralysed. I took Mum for a CT scan at University Malaya, as I had heard they are very good in managing Alzheimer’s. From the scan, we found out that she’d had multiple strokes that affected blood circulation to her brain, damaging her cognitive abilities. This was followed by monthly appointments with her doctor, where I would keep him updated on her condition. As it was getting very taxing for me to care for her at home, and my dad’s health had worsened to the point where he needed my help as well, the doctor advised me to send my mum to a nursing centre.

 

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His words hit me deep and hard. I cried and tried to reason with him, “There is no part of my body that is disabled, so why can’t I take care of my mum!” He explained gently, “You’re not a nurse, you’re not specialised. It’s not that you cannot take care of her, but your mum has a special illness that needs a dedicated nurse.” In our society, it’s instilled in us from young that we have to take care of our parents. But I couldn’t deny that the doctor’s words made sense. The problem is not many places offer this kind of service, and if they do, they’re usually very expensive. Thankfully, we located a dedicated Alzheimer’s nursing centre that is near my home.

 

Step by step

After just six months, my mum could once again use a fork and spoon. She doesn’t scream and shout anymore. People with Alzheimer’s are very particular about routine, so at the centre residents wake up, bathe and go to sleep at a certain time every day. In between breakfast and lunch, they play games like Scrabble. It doesn’t matter if they don’t form a proper word, so long as they pick up the tiles and try to put them on the board. They are also encouraged to take part in different activities like dancing and tai chi.

My mum no longer recognises us. When I visit with my kids, she smiles when she sees us but doesn’t hug us. She does play with my kids’ hands, so at least there’s still a way for them to connect to their grandmother. It hurts me to know that no one else comes to spend time with my mum. I ask to see the visitor’s log, which is how I know. I feel really sad for her and many of the residents, whose children are too busy to visit. My own sister has chosen not to get involved.

Despite the improvements my mum has shown since living at the centre, I’ve received so much criticism for ‘abandoning’ her. People tell me I’m a bad child, and ask how I would feel if my kids did that to me. My daughter is 17 and my son’s 12. I’m scared that I will get Alzheimer’s – my life is so dedicated to caring for my mum, I pity my children if they have to do the same for me one day. I’ve even told them that if the worst were to happen, I would understand if they send me to a nursing centre.

I have considered taking my mum back home to live with me now that my dad has passed away. But the doctor advised that it would be in my mum’s best interest to remain at the centre, where her condition has stabilised under the nurses’ care. Bringing her home would simply subject her to the anxiety and discomfort of getting used to new surroundings. She’s well, other than having Alzheimer’s, but I live in fear of getting a call from the centre, telling me that something has happened to her.

 

Seeking compassion

I believe my mum’s lifelong need for routine contributed to the development of the disease, because sticking to a fixed schedule all the time makes the brain do less work. Before my mum developed Alzheimer’s, breaking with routine would cause her to panic, even if it was something as simple as a change in dinner plans. An assertive woman who wasn’t afraid to speak her mind, she would even reject her boss’s request to accommodate last-minute changes.

Perhaps it’s because my mum comes from a broken family. Her father passed away when she was a baby and her mother remarried twice. She became a big sister to her siblings and had no time to herself. Growing up, she had to move from home to home and always felt out of place.

 

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I know my mum won’t get better, as there is no cure for Alzheimer’s. It’s too late for her, but if the signs are spotted early, it’s possible to get treatment to slow it down. These days, you can even do a genetic test to determine your risk of developing the disease, but so few people are aware of it.

Malaysians in general still do not know much about Alzheimer’s. My mum has been chased out of restaurants and I’ve fought with managers who said “I hope you don’t bring your mum again”. People have also told me, ‘Leave her at home la, don’t take her out.” It’s not that my mum chooses to behave the way she does – it’s the disease, and she has no control over it.

 

Staying positive

We sold my parents’ house, with my portion of the proceeds going towards my mum’s medical and nursing centre bills. It’s enough for now, though I do worry financially about the future. I don’t regret quitting my job to care for my parents and I’ve since started a small business, but the economic downturn has affected it. I hope there will be an increase in awareness of Alzheimer’s, with more support and financial assistance offered to caregivers. There’s a walk for cancer, so why can’t there be one for Alzheimer’s? For now, I take one day at a time and believe that something good will come my way soon – God isn’t so cruel.”

 

This article was originally published in Her World Malaysia.

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