SINGAPORE: Kelly Ho was once an active, talkative girl, but at the age of 13, a rare terminal illness confined her to a wheelchair and robbed her of her ability to talk and live normally.
Kelly was diagnosed with Gaucher disease, an illness marked by an abnormal build-up of fatty substances in the organs. It affected her brain and she is now completely dependent on help, unable to control the movement of her limbs.
Watching the deterioration of her daughter, now 17 years old, has been the most difficult thing for Madam Sally Lim. For the past four years, the 57-year-old single mother has been by Kelly’s side day and night, doubling up as nurse and physiotherapist; her energies devoted to taking care of her only daughter. The tenderness Madam Lim shows in stroking Kelly’s hair and peppering her cheek with kisses belies the struggles she has had to go through.
“I lost my independence and have had to deal with many unpredictable situations. I am quite frustrated sometimes and it can leave me in a bad mood. It makes me sad to see her in such a state,” she told Channel NewsAsia.
Madam Lim left her job as a waitress in a restaurant to take care of Kelly. “I wanted to the one that is by her side. I’ve been by her side since she was young, so I didn’t want her to think that because of her illness, I’ve abandoned her.”
When Kelly is at home, Madam Lim has to assist her in the toilet and ensure that she frequently dispels her phlegm, which accumulates due to a weak cough reflux. “I need to note it down if she has phlegm and look at her general well-being. These nitty gritty things can get frustrating, especially when I have to do them routinely,” she said.
HELP, TREATMENT AND SUPPORT
Help for Madam Lim came last month, when Kelly was admitted to Assisi Hospice, where Singapore’s first paediatric palliative ward was officially opened on Wednesday (Apr 12).
The facility offers specialised treatment for children with terminal illnesses, with medical staff on hand with a range of expertise, including helping to improve patients’ overall quality of life. Admitting children to the ward will also offer respite to their parents, who may struggle to cope physically and emotionally with their very sick sons or daughters.
Madam Lim said she has seen Kelly’s condition improve in just a few weeks. “She’s more responsive and cooperative. I can see from her expressions. She is happier, she laughs more. That makes me happy.”
Life is different now. “Here, I get help, and she gets to play with others. She also gets to listen to music – these are all things that she loves. She’s very well taken care of, they are very meticulous.”
Instead of helping Kelly with her medical needs, Madam Lim can now spend time just holding her daughter’s hand, or stroking her hair.
In fact, she is so reassured by the quality of care that Kelly is getting that she felt able to take a short holiday for the first time in years.
PILOT DEMENTIA AND PAEDIATRIC CARE PROGRAMMES
While paediatric wards in hospitals focus on the treatment of conditions, Assisi Hospice will fill a gap for those with terminal conditions who require treatment, care and support.
Assisi Hospice’s head of medical services, Dr Shirlynn Ho said: “Parents want to take their children home, but when families cannot manage, either because of the care environment, or the number of caregivers, this is an alternative, which has not been there before.” There are five beds in the paediatric palliative care ward.
She added that the hospice provides spaces where siblings and families can spend time with patients and allows them to visit at any time. This is unlike the approach in hospitals, which have some restrictions and more of a focus on treatment.
Nurses at the paediatric palliative care ward pay personalised attention to patients, finding out what works for them and working accordingly. Kelly, currently the only patient on the ward, enjoys music and so staff make sure something is always playing.
Non-profit philanthropic organisation Temasek Foundation Cares, which established the new care models with Assisi Hospice, is offering financial support to the paediatric programme as well as a ward for dementia patients. Its chairman, Mr Richard Magnus, said: “We are taking the lead to pilot new models of end-of-life support care for both the young and old in situations where medical intervention has reached its limitation.”
GOVERNMENT SUPPORT FOR PALLIATIVE CARE
The paediatric programme will be piloted for three years, while the dementia programme will be piloted for two years.
Under the dementia programme, patients with advanced dementia will receive specialised care to manage their unique symptoms, for instance, better control and management of pain or discomfort. Caregivers will also receive support.
Chief executive of Assisi Hospice Choo Shiu Ling said: “Advanced dementia and life-threatening conditions impact patients and their caregivers more significantly as they not only deal with disease symptoms, but also the loss of personhood, life aspirations of the patient and cherished interactions with the family.”
Chairman of Temask Foundation Cares Richard Magnus (left) and Senior Minister of State of Health Dr Amy Khor (centre) visiting patients in the new dementia ward at Assisi Hospice. Among activities aimed at improving their condition is a sing-along session. (Photo: Jalelah Abu Baker)
To date, the dementia ward has had 24 patients. One caregiver who has benefitted is Mr Kwan Thim Kit. He has been caring for his mother, Madam Chan Lim Seng, 92, for seven years. He said: “The music therapy kept my mother active and mentally engaged, and in another therapy session when she made cookies, she was reminded of her cooking skills,” he said. He added that with professional inpatient services to take care of her medical and psycho-social needs, he is able to enjoy some personal time and spend more quality time with his mother.
Speaking at the opening of the new wards, Senior Minister of State for Health Amy Khor, said that palliative care is becoming increasingly important, particularly due to an ageing population, so the Government has been ramping up efforts to improve affordability, accessibility and quality of such care.
She said she is heartened that Assisi Hospice is introducing new care care models, to serve a wider group of patients, she said.
“It will help us better understand and develop knowledge on care for these kind of patients. We look forward to more innovative care models and more partners coming forward to develop the palliative care sector,” Dr Khor said.
Meanwhile, Madam Lim is now daring to dream of new possibilities. She hopes for Kelly to be able to do the things she loves again, although there is no known cure for her disease. “I hope she can pursue her interests. I will support her.”
