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At 6 months of age, Constance* missed the common milestones of a baby and was sent for investigation. Doctors could not provide an actual diagnosis and thus presumed that Constance suffered from Quadriplegic Cerebral Palsy (QCP).
QCP is usually a result of brain damage before birth, during, or shortly after and causes include prematurity, foetal infections or stroke, maternal infections or exposure to toxins. It results in the inability to control and use the legs, arms and body, with an increased risk of developing limb deformities and contractures.
Constance is 29 this year and although technically an adult, she is of small stature and was referred to StarPALS at the end of Jan 2021.
I recently visited her together with our nurse and medi-minder co-ordinator.
Mummy June* was all smiles as she opened the gate for us and warmly welcomed us in. Constance was in her pram watching a cartoon on TV. Being quite small, she looked no more than five years old, with her arms curled up against her body. Her limbs were thin as rulers, but she had the most inquisitive eyes that darted all over the place, observing her guests. June lifted her up with ease, put her on her lap and began chatting with us. June lovingly rubbed Constance’s forehead, wiped away her drool and kept a blanket over Constance to keep her warm.
June has an elder son, who is hearing impaired. He had gone for a checkup that day, but would otherwise be working from home. He helps June care for Constance, when she has an errand to run. As the main caregiver, June dotes on Constance. She will take Constance out as often as she can, using public transport. She goes to the Gardens by the Bay once every two weeks and she giggled when we called them the “Gardens Ambassadors”. She told us that she had to cancel last week’s outing as the elevator to their ninth floor unit broke down. It made Constance quite unhappy.
She shared with us that since her hubby passed away four years ago, all their relatives stayed away from her and Constance. She said it was understandable for anyone to avoid them, as very few people wanted to share her burden. Last year, when June had to undergo a surgery, she had no choice but to put Constance in a nursing home. Being the loving mother that she is, she came out of hospital every day to feed Constance at the nursing home. The staff there were rather embarrassed and flabbergasted that Constance would only eat when June fed her. Her hospital stay was cut to the minimum and soon mum and daughter were together in the confines of their own home.
We explained to June that we could get medi-minders to help her. HCA’s medi-minders are all trained to assist StarPALS families with befriending, suctioning and feeding and other tasks. By just being there, June would be able to get some respite. June has been independent all these years, but she also realises that some help would be useful. She then agreed to meeting our medi-minders, so she could show them how she fed Constance.
Throughout our conversation, Constance was looking at each of us intently. She seemed to understand what was going on and most times looked at her mummy with adoring eyes. Constance is certainly the love of June’s life.
I asked our nurse why Constance was only just referred to us. Afterall, June had been looking after her for nearly 30 years. Our nurse explained that Constance used to be admitted to the hospital quite frequently, but in the last few years, she had stabilised and only needed to go for regular checkups. At the last checkup, it was observed that although she had weighed 10-11kg for the past 15 years, she had suddenly lost two kilograms in two weeks. Hence the hospital felt she was deteriorating and possibly dying. Constance’s prognosis is uncertain. She is extremely vulnerable and she could suddenly deteriorate and die in days or weeks.
I am very touched by June. Her love for Constance is so steadfast. She deserves all our admiration and I pray for both their wellbeing.
angie
