What is it like to love someone who forgets you?


  • Focus
  • Monday, 07 Dec 2015

It is not easy for any caregiver to deal with those having dementia.

For Sazlina Yusof (name changed), one of the hardest decisions the family made was to sell their car to prevent her father from taking off without the family’s knowledge.

“He was very persistent about wanting to leave the house and we cannot allow him to do so,” said the 41-year-old, adding that he has fled the home on several occasions.

He’s lost his memory and cannot recall the family members. “He doesn’t remember any of us,” she adds sadly.

Dementia, which characterises a range of symptoms including a decline in memory and thinking skills, can negatively affect a person’s ability to perform their daily activities.

Few are diagnosed in the early stages, and many only seek treatment at a later stage.

With dementia, the challenges are monumental for the patient. However, caregivers themselves are faced with their own set of challenges, where emotional scars are often left unknown to others.

Apart from the physical and emotional toll on caregivers, families are also left to make tough decisions for their dementia-stricken loved ones, including taking their rights away to ensure their safety.

 “I kept my father confined and he gets very upset about it. He has also lost the perception that the house is his home and felt that he was held in a place against his wishes,” said Sazlina.

Her parents live on their own, with her 73-year-old mother acting as the primary caregiver of her 76-year-old father.

 “It requires a lot of patience to deal with his mood swings and my mother tries to avoid doing or saying things that might set him off.

“He’s confused and has lost the definition of a lot of words. That makes it harder to try and understand what he wants or what he’s asking.

“As he can’t remember my mother and what his relationship is with her, conversations would become very difficult because he would become very defensive and upset,” she said, adding that there were some days where he thinks her mother is the maid or a total stranger.

There are stark differences from who he was before and after his diagnosis. 

“My father was a highly educated man who was also a quiet person, which I think masked the situation to a certain degree.

“He used to read a lot, keep up to date with current events and enjoyed gardening. Nowadays, he sits by the window and watches the world go by,” she noted.

Like many others, Vijayamalar Sivasegaran mistook the telltale signs of dementia in her father as a normal sign of ageing.

“My father was either fixated with something, would forget things or he would constantly repeat himself,” she said. When his forgetfulness became more pronounced, her mother took her father to the hospital where he was finally diagnosed with dementia.

Thirteen years on, the 43-year-old’s family is coping to the best of their abilities to ensure their 86-year-old father’s quality of life remains good.

"I started reading up on literature and speaking to doctors on how to manage and care for a patient with dementia," she said.

“He used to be better but now that he’s older he needs more guidance, reassurance, comforting and he also needs directions,” she said, adding that he also has challenges with his motor skills, such as buttoning his shirt.

They avoid leaving her father, a former civil servant, alone for long periods as he sometimes gets disoriented. With the syndrome affecting his speech, it becomes challenging for others to make out 
what he is saying. 

Even on his good days, her father stays out of social gatherings for fear that people will see him as stupid or senile, while he becomes embarrassed that people have difficulty understanding him.

With medication costing between RM900 to RM2,000 per month, Vijayamalar is one of the lucky ones as her father’s fees are borne by the government.

While there is no cure for the syndrome, Vijayamalar complements her father’s medication with supplements including ginkgo biloba and virgin coconut oil.

She gives these to her father in good faith that it would help slow-down the progression of dementia and help improve his blood circulation.

While not a substitute for conventional medication, a spokesman for LF Asia (M) Sdn Bhd, the official distributor for Dr Willmar Schwabe Pharmaceuticals’ products in Malaysia, explained how some studies have shown that standardised ginkgo biloba extract such as EGb761 may be helpful in improving memory performance for those with dementia and help maintain their functionality.

LF Asia is a division of Li & Fung, a Hong Kong-based multinational healthcare distributor, consumer goods design, development, sourcing and logistics group. In Malaysia, they are also the distributor of ginkgo biloba extract, EGb761.

The company distributes EGb761, which is a unique and patented standardised ginkgo biloba extract that helps to neutralise free radicals and increase blood circulation.

To a certain extent, the usage of gingko biloba extract EGb761 has also been shown to help reduce the burden of caregivers looking after dementia patients.

While the emergence of such supplements are welcome additions for the treatment of dementia, caregivers and patients must consult their doctor for a prescription.

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