As I neared the doorstep of our patient’s home, it felt strangely familiar. Then when Aunty Halima* opened the gate, I realised I had been here before about a year ago, when Bobby* had just become our Starpals patient. Bobby suffers from de Morsier syndrome, a rare genetic condition that has affected his optic nerve, resulting in poor vision. His limb muscles are not well developed and he is unable to walk.
Aunty Halima recognised me and I had also just met Bobby at our recent “Family Foto Fair” where I had taken a photo with him, in his favourite buggy. Bobby was alert and I remember how much we enjoyed watching a performance by Cliff, one of our volunteers. At the Family Foto Fair, we provide our patients and their families an opportunity for a makeover and then have their family portraits taken by professional photographers. Each family gets to take home a framed family portrait and a thumbdrive of all their photos. The Foto Fair is a festive occasion with many other activities, including volunteers singing, doing balloon sculpting, game booths, food and fun – much like a carnival!
As I neared Bobby, I observed how he expertly flicked the Velcro strap of his oxygen mask with his right thumb and grabbed the tube with his left hand, to remove the mask from his face. Aunty Halima “complained” lovingly that he had been doing that all day. Bobby had been unhappy and uncomfortable with the mask around his nose and mouth that caused pressure sores. That was the reason why he kept trying to remove it. Bobby was running a temperature and had a cough. His breathing was harder than usual.
“Bob, you need this to help you breathe,” coaxed Aunty Halima. Bob whined a little and Aunty Halima said, “OK OK, we let you have five minutes without the mask, but you must put it back on OK?” After our nurse examined Bobby, she asked if Aunty Halima would like a medi minder (a trained volunteer) to help look after Bobby. Aunty Halima stands by Bobby’s side all day to ensure that his oxygen mask was safely put on. “No, no need. I need to spend as much time as possible to look after Bob! Don’t worry, Uncle will help me later,” she said.
Our nurse discussed medications with Aunty Halima and finally asked her again, if she needed a medi minder. She declined but asked our nurse to inform Bobby’s mummy about the medication required. No, Aunty Halima is not Bobby’s mummy, but an aunt who loves Bobby to no end. Aunty Halima has been looking after Bobby, while mummy is working and she treats Bobby like her own. What strikes me most about this beautiful gem, Aunty Halima, is that Bobby is an adopted child. Yet, Aunty Halima gives so much love and care. If every caregiver gives the same loving care, more people can live comfortably and in dignity, their last days at home. Thank you Aunty Halima!
*Not their real names