Mdm Latheffa, HPCS Caregiver

My Journey as a Caregiver for two sons with Cerebral Palsy

“When my eldest son, Akhbar was 4 years old, he still wasn’t walking like other kids. I realised something was very wrong when he would only wriggle across the floor to move from place to place. After a visit to the doctor, Akhbar was diagnosed with Ataxic Cerebral Palsy and Hypotonic Diplegia. When I was pregnant with my second son, Ashraf, I made sure to take supplements and to visit the doctor regularly. However, as Ashraf grew slightly older, I realised he displayed the same symptoms as his brother. When Ashraf was diagnosed with the same condition, I was very shocked. But I told myself that this is God’s will and I will accept it. I will do anything to help them. When I was pregnant with my third son, I had many worries and fears, but my husband and I prayed hard and decided to go with the flow. Thankfully, my youngest son has no such condition.

It was difficult bringing them up with so little help. They used to go to school but nowadays they spend all their time at home. Akhbar and Ashraf enjoy listening to the radio and watching TV. Akhbar is quieter and likes to play with iPad, whereas Ashraf is chattier and has the hobby of writing in his diary. My boys can do most things by themselves, but they cannot walk, go to the toilet or shower themselves. I always have to be there to help them. No matter how I try to rest, I always worry about them. I have taken care of them for more than 40 years while my husband was working. My sons are close to 50 years old and I am already 67. Now that I am a lot older, my body is also weaker. I have back ache and my left knee hurts when I wake up or when I move around to do housework. My husband is unable to render much physical support too as he has medical issues of his own. My youngest son tries to help out whenever he can, but when he is busy, I have to do everything on my own.

Three years ago, a friend introduced me to AWWA Home Personal Care Service, and the staff agreed to help my boys. The AWWA staff have been doing therapy exercises with my boys, helping them shower and taking them for walks around the void deck or to the nearby shopping mall. It feels nice to have someone taking care of them so I can take a short break. The burden is lesser for me. Even though we have organisations like AWWA helping us, I still worry. If anything happens to me, where will my sons go? What can they do to survive? Their well-being is my utmost priority. My sons deserve the world, and I hope they continue to live with a positive outlook as I have throughout my life.”

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