Experience of having a mother with Alzheimer’s Disease: From a caregiver’s perspective

Statistics showed that 18 million people worldwide is diagnosed with Alzheimer’s Disease and the number is expected to rise to 34 million by 2020. Alzheimer’s Disease not only affects the patients, but also profoundly changes the lives of their family members. Caring for a loved one with Alzheimer’s Disease is sometimes referred to as a “36-hour-a-day” task as it can be stressful and overwhelming. Studies shown approximately 60% of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high. As many as 40% of them suffer from depression. In this article, we interviewed Professor Ong Kok Hai, the Director of External Affairs of IMU, to share his personal experience of taking care of a mother with Alzheimer’s.

Prof. Ong shared that his mother was great and loving, much like any other mothers. She passed away peacefully few years ago, at the age of 98. He first noticed that there was a slow change of behavior in his mother and decided to bring her to see a doctor in University of Malaya for a check-up, only to have her diagnosed with Alzheimer’s Disease. Prof Ong said that her mother was staying with his sister, and they would sometimes take turns to look after her. He also hired a maid to take care her mum after she is diagnosed with Alzheimer’s Disease.

The initial symptom, which is mandatory for this disease, is being forgetful. Moving on, she tends to hide cutleries in her room, or walk around the house in the midnight or at dawn. As the disease develops, the symptoms aggravate. She started defecating all over the places, resist showering, pinching the caregiver and drinking soap water. As the disease progress to its later stage, his mother gradually lost the ability to talk sense and forgets her family members.

“The biggest lesson I learned from this experience is, to treat them gently and with love”, added Prof Ong, with a misty-eye and a brittle voice. He further mentioned that he only realized how little awareness was done about this disease in Malaysia, after the loss of his mother. He hopes that more initiatives can be taken to create a simple platform to raise awareness of Alzheimer’s Disease. In this regard, ADFM is doing a great job but its efforts need to be further expanded to other location in Malaysia.  “We can start small: by targeting certain areas, or even our neighborhood”, said Prof Ong. He also specified it is important that caregivers need to be taught certain skills on how to handle Alzheimer’s patients with an optimistic attitude and with love, not forgetting to take a break occasionally. “Although there is nothing we can do to cure this disease at present, but we can try our best make them feel more comfortable”.

Photo taken after the interview. Left to right: Annabel, Prof. Ong and Kerk.

Written by Annabel Chong & Kerk Qian Wei

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