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Caring for Autism in Adulthood: An Elderly Caregiver's Struggles

Updated: May 25, 2023

Nenek Fatimah & Rina’s story

For Nenek Fatimah - one of our beloved Care for the Elderly beneficiaries - she is struggling to not only care for herself, but caring for her daughter, Rina, who is living with autism.

Rina, 41-years-old, is the sole caregiver for Nenek Fatimah. Our team at GER has met the mother and daughter for a few visits and every time, we are blessed to be welcomed with open arms by the two of them.

With her friendly nature, it is easy to strike a conversation with Nenek Fatimah. Likewise with Rina - despite a few communication barriers - it was clear how much she appreciated our presence and visits.

However despite their warm welcomes and friendly persona, the mother-daughter duo are struggling every single day, with challenges that might often be overlooked by the community.

Nenek Fatimah’s plight is a daily battle - she is wheelchair-bound and is suffering from various medical conditions, including severe shaking on her left side. On top of dealing with her own illnesses, Nenek Fatimah is also the only one responsible for taking care of Rina. While Rina has a sincere heart with people and loves to sing, her temperamental behaviour and occasional tantrums make it difficult to care for her. Caring for an adult child with intellectual or developmental disabilities can add mental and physical stress to an older adult’s life.

Individuals who are caring for their dependent adult children are often struggling financially, coping with ageing and health issues - especially those who are wheelchair-bound like Nenek Fatimah.

Rina is one of over 19,000 adults in Singapore who are diagnosed with autism. Unfortunately, there are no specialised homes for adults on the spectrum and those living with the disorder have to reside in institutions like Bishan Home - one out of five residential homes for intellectually disabled individuals in Singapore.

When these residential institutions become an unavailable option, these adults with autism cannot afford to live anywhere else but with their parents. This is however, a silver lining for the family as in the case of Nenek Fatimah, Rina has been her sole caretaker, as she is for Rina. The pair are strongly reliant on each other.

Unfortunately, this does have its complications.

During one of our visits, we found Nenek Fatimah on the floor, at the foot of her wheelchair when we arrived. She was struggling to get up from her fall after slipping on the leg of her wheelchair. Rina was unable to help her mother due to her own condition. Fortunately, our team arrived right on time and were able to carry Nenek Fatimah back to her wheelchair.

Additionally, Nenek Fatimah had previously employed a helper to help her with the household chores, such as cooking, cleaning and taking care of other household matters. However when the helper requested for double the compensation that she received - due to Rina’s condition and having to care for her - Nenek Fatimah had no choice but to terminate her service. Since then, there has been no one at home to cook for the two of them, and they rely heavily on ready-cooked meals and food aid donations.

Through our numerous visits with families such as Nenek Fatimah, it strengthens our mission here at Global Ehsan Relief even more, to provide aid and relief to the individuals who are often overlooked in the community, but are in dire situations.

We invite you to make any contribution that you can to our Care for the Elderly project and help alleviate the struggles faced by our beneficiaries like Nenek Fatimah today.

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