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Life, Love, and Last Wishes
When Mdm Chong was informed that her husband, Mr Chang, required end-of-life care due to liver cirrhosis, disbelief washed over her. To her, he seemed fine, showing no visible signs of deteriorating health.
Her resistance to HCA's home care service was palpable during our first visit in August 2023. To someone struggling to accept the gravity of her husband’s condition, the suggestion to rearrange their living space to accommodate his care felt intrusive. A turning point came when our nurse began treating the ulcers on Mr Chang's leg, patiently guiding Mdm Chong on how to care for them herself. As the wounds gradually healed, so did her apprehension about accepting help.
As Mr Chang's health declined, he remained adamant about not wanting to die in a hospital. However, caring for him grew increasingly challenging, particularly during the last two months of his journey when he required attention round the clock. Mdm Chong was overwhelmed, especially since they had no children to share the burden. The physical and mental strain began to take its toll.
Finding Support and Comfort
To alleviate her stress, HCA's medical social worker arranged for respite services up to six times a week to ease her caregiving responsibilities for tasks such as baths and diapering, which were exceptionally demanding due to his large stature. The additional support also allowed Mr Chang to visit the coffeeshop downstairs like he used to. “He was a tremendous help to me,” she shared, “and my husband loved chatting with him when he could still talk too.”
With her focus solely on caregiving, Mdm Chong had not been able to work. HCA bore the cost of the respite services and assisted her with subsidy applications to purchase necessities like food and diapers. When Mr Chang struggled with breathlessness in late April, her initial worries about the expenses of renting an oxygen machine dissipated when HCA loaned them the equipment at no charge.
Mr Chang passed away peacefully at home in May 2024, according to his wish.It started with minor slurring of his words before other symptoms like memory loss, attention deficit, and bowel control issues began to manifest. After several visits to the doctors, Mdm Iffah and her husband, Mr Abbas, learned that their son, Irfan, had X-ALD, a rare genetic disease that progressively affects the brain and spinal cord. Through the challenging and sometimes painful treatments, Irfan remained brave, even as his condition regressed where today he has challenges with mobility and verbal communication.
Putting aside her career as a teacher to be Irfan's full-time caregiver, Mdm Iffah found the support of the Star PALs care team invaluable. In addition to taking care of Irfan’s medical needs during their regular visits, the nurses also taught Mdm Iffah techniques on how to administer medication while the medical social workers provided invaluable counselling for Mdm Iffah and her husband. Irfan was also introduced to art therapy to keep him mentally stimulated and active.
“The regular visits by the nurse and social workers have been a great relief for us. Not only have they helped in Irfan’s care, they have also provided me with emotional support.”, Mdm Iffah shared.
At the Star PALS Family Day, Irfan's family got to know another family whose child had the same condition. This new connection brought Mdm Iffah some comfort in the knowledge that they were not alone. She said, “Being able to share our experiences has been incredibly heartening. Not just being able to share tips, but also the emotional journey and recognition that we are not the only ones going through this is invaluable for us.”
“Community” is how Mdm Iffah describes what Star PALS means to her, expressing that “I want to thank the nurses and the team who have been there for Irfan and for us. They made it just that bit easier for us.”43,017*
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