New respite service for those caring for loved ones with muscular dystrophy

Mr Syahrunizham Zainal (left) using the ventilation machine at Tan Tock Seng Hospital (TTSH). A new service which gives respite to caregivers of persons with muscular dystrophy was launched on Friday, by the Muscular Dystrophy Association Singap
Mr Syahrunizham Zainal (left) using the ventilation machine at Tan Tock Seng Hospital (TTSH). A new service which gives respite to caregivers of persons with muscular dystrophy was launched on Friday, by the Muscular Dystrophy Association Singapore (MDAS). -- PHOTO: ST FILE

SINGAPORE - A new service which gives respite to those caring for people with muscular dystrophy was launched on Friday by the Muscular Dystrophy Association Singapore (MDAS) and Abilities Beyond Limitation and Expectations (Able), an organisation that helps the disabled.

Called AGAPE Respite@MDAS, it provides a pool of trained nurses that can be tapped on by caregivers who need a rest.

The caregivers can either arrange for the nurses to take over in their homes for a few hours, or take their loved ones to the association centre in Bishan.

There, they can also participate in programmes such as Ukulele lessons or mooncake-making workshops, without worrying that their children will be left unattended.

Those with severe muscular dystrophy require round-the-clock care, said a spokesman for the association, as they not only need help moving around but also have to be shifted at night to prevent cramps.

"Hence very often, caregivers neglect their own well-being, causing physical, mental, social and emotional states to deteriorate overtime," she said.

So for caregivers like Ms Linda Tan, 47, whose 19-year-old son suffers from the condition, the service gives them a much-needed breather.

"I feel less stressed now and have even learned skills which I never thought I would have the time to learn," she added.

The service has been piloted since February last year (2013) and currently has eight trained nurses, and aims to add two more to the pool by the end of the year.

It has also benefited 18 households through a total of 463 home-based sessions since July this year.

Mayor of Central Singapore District Denise Phua, who was guest-of-honour at the launch, notes that in the last 10 years, there has been a lot of focus on developing direct services for persons with special needs, especially in their early years and school years.

"Maybe the next phrase is to really focus on adults with special needs and caring for the caregivers, especially those with children who are more severe in their disabilities," she said.