Even as a trained nurse with decades of experience, Mrs Harjeet Sandhu found it immensely difficult to care for her late mother who suffered from Alzheimer’s Disease. For years, she served her mother with love and care without any complaints or regrets.
When her mother passed away, she felt that her mother’s soul had left with dignity, not being ill-treated or shunned just because of her illness. But Harjeet often wondered, “What about others without nursing or medical backgrounds – how do they care for their parents suffering from Alzheimer’s?”
To address this concern, Harjeet, along with other retired government servants with similar backgrounds in caring for a loved one with Alzheimer’s, set up the Johor Bahru Alzheimer’s Disease Support Association (JOBADA). Alzheimer’s is an irreversible progressive brain disorder that makes one ‘forget’ how to respond to the environment in terms of speech or thought. A patient might even lose the ability to ‘know’ how to walk, but in the middle of the night while everybody is asleep, may start walking around the house without assistance.
Harjeet recalls how her mother used to demand to be bathed at 4 AM, thinking that the sun was out already. In reality, the sky was still blanketed in darkness and the sun was evidently not out yet, but her mother was not able to make sense of the situation. Her mother also blatantly told visitors how she had not been fed for three days and accused Harjeet of stealing her money – statements that could cause misunderstandings amongst family members if the situation was not understood.
Initially, Harjeet fulfilled her late mother’s request of bathing at odd hours and argued when accused of theft, but over time she learnt to say “wait” to her mother – who would then ‘wait’ and forget about her demands. Harjeet also learnt to work around her mother’s accusations by slipping money underneath her mother’s pillow, then pretend to look for it and later to announce: “Here ma, I found the money – it’s under your pillow!”
After her retirement in 1993, Harjeet volunteered at a hospice palliative care for four years. Her mother, who was bedridden, lived with her for three years. She started working on JOBADA after her mother’s passing. JOBADA is a daycare centre for patients suffering from Alzheimer’s. It started with half-day mind-stimulating activities for patients in a community centre in 2001. In 2006, a kind-hearted doctor offered his bungalow at RM10 per month for JOBADA. Another man donated his van for their use. That was how they started their daycare services, all from the help of wonderful samaritans. The daycare service, which charges families a low operational fee, transports patients two-ways, provides soft and no-pork no-beef diet and has activities to keep the patients active. Those who cannot afford the fees are allowed to pay what they can. According to Harjeet, it is not recommended for patients with Alzheimer’s to be placed or included in “normal” care centres as a lot of misunderstandings can arise.
She believes that patients with Alzheimer’s should stay amongst loved ones. “Old people should be appreciated. Children should not neglect them,” says Harjeet.
In 2016, the JOBADA team finally bought a building at Larkin Jalan Sukarela and moved there in 2017. Harjeet still visits patients at their home when required and teaches the children of patients how to care for their loved ones better. When the patients have passed on, their children usually donate the medical beds, wheelchair, and other equipment to JOBADA for the next person who needs it.
