December 27, 2022
Photos by: Kathy Lim | Words by: Simran Panaech
(Photo above) Ms Jane Goh is the primary caregiver to her 84-year-old father, a person with Parkinson’s disease (PD) who requires constant monitoring. Jendah (left), the family helper, cares for Mr Goh when Ms Goh is at work.
An optimistic view of life and a positive mindset are inspirational, especially when caring for someone with a chronic illness. For Ms Jane Goh, it’s become an important part of caring for her 84-year-old father, who was diagnosed with Parkinson’s disease 10 years ago.
“Whatever we go through in life, we can turn it into a gift and bless someone. I believe a lot in that,” says the 51-year-old who works at a non-profit organisation. “I believe if my dad can communicate now, he will use the same journey he’s going through to bless someone.”
Parkinson’s disease (PD) is a type of movement disorder that affects the ability to carry out daily activities. It is a chronic and progressive disease.
(Above) A community nurse from the Parkinson’s Disease Community Care Programme performs a routine abdominal checkup on Mr Goh to determine if any organs are inflamed or hurt.
This progression has given Ms Goh and her father time to adapt to the conditions of the disease by learning to accept it gradually and adjusting their expectations. “It’s a process of grief… a system of adjustment and transition,” shares Ms Goh.
One misconception about PD is that it is curable. Unfortunately, this is false, but patients can prolong their lives by managing their symptoms. Some patients might feel it is a “death sentence” because they will have “a lot of disabilities in the future”. But Mr Goh Rui Hao, a senior staff nurse at Singapore General Hospital (SGH) disagrees. “For someone with a neurodegenerative disease, it is crucial to manage the symptoms to bring about a good quality of life; take medication and be active,” he explains.
Nurse Goh is the community nursing lead of the Temasek Foundation Parkinson’s Disease Community Care Programme. It is a two-year pilot programme in partnership with the National Neuroscience Institute (NNI) and SGH.
(Above) Mr Goh watches one of his favourite Chinese travel television series from a wheelchair. At the same time, the attached nurse observes the patient’s alertness and well-being.
A total of 40 SGH community nurses (CNs) covering five neighbourhood communities work closely with the SGH multidisciplinary team of healthcare providers who specialise in PD care. The team comprises neurologists, advanced practice nurses, physiotherapists, occupational therapists, speech therapists, dietitians, medical social workers, and a programme coordinator.
“The objective [of the programme] is aligned with the Ministry of Health’s plan to extend the care of chronic conditions into the community and reduce the risk of complications that will require hospital-based care or hospitalisation,” says programme lead, Associate Professor Prakash Kumar Manharlal, a senior consultant at NNI’s Department of Neurology.
“The CNs make regular contact with seniors between their scheduled hospital visits. They do teleconsultation and in-person visits at a nearby community nurse post or a patient’s residence. The programme complements hospital-based care to improve the well-being of these seniors.”
About 180 seniors with advanced Parkinson’s and their caregivers living within the residential zones covered by SGH Community Nursing have been enrolled in this pilot. The programme is available for those living in Tiong Bahru, Telok Blangah, Katong, Chinatown, and Bukit Merah.
(Above) Caregiver Ms Jane Goh and her helper Jendah monitor Mr Goh’s temperature and pressure. They also note any questions they may have for Nurse Goh on his subsequent home visits.
Caring for Those with Parkinson’s Disease
The programme starts with assessing a patient’s lifestyle and home setting, explains Nurse Goh. During the first few visits to a patient’s home, a nurse will look at areas in their life that need modifications. For example, examining their medication or observing how they cope at home and in their daily routine.
“If they do not have any grab bars or ramps at home, we can refer them to HDB’s Ease (Enhancement for Active Seniors) programme. They can do some home modifications for them,” shares Nurse Goh. In Ms Goh’s case, she modified the bathrooms, toilet flooring, and beds in her father’s room. She ensured all equipment, including wheelchairs, was in place.
Ms Goh and her father have been part of this pilot programme for over a year. As a caregiver who works full time, Ms Goh’s regular weekday routine with her father is to have dinner together. “Currently, because he’s on the NGT (nasogastric tube feeding), it’s more of me coming home and spending that time with him, even though he’s bedridden,” she says. One of the downsides of Parkinson’s is difficulty swallowing, which is called dysphagia. It can happen at any stage of the disease.
On the weekends, she devotes most of her time to him. Ms Goh will take him out in a wheelchair to look around and explore Singapore. The father-and-daughter duo will try to eat together at restaurants. If he cannot eat because of the NGT, she will prepare his food so he can still be part of the family meal.
(Above) Medication for Mr Goh is carefully portioned out into pill organisers every week to plan and distribute the patient’s daily doses.
Like many Singaporeans, Mr Goh loves his food and has tried to carry on eating what he enjoys throughout his illness. There are, however, a lot of limitations now that he is on the NGT, but Ms Goh still tries to stimulate his taste buds. He enjoys sweets like pastries and cakes, so she “just dips them on his lips” for him to be able to taste them again.
Finding Help When You Need It
Ms Goh welcomes the help she gets through the programme. “Nothing beats having home-based care, especially when a patient reaches a stage when it’s so difficult to bring him for appointments at the hospital,” she says.
She also appreciates having a community nurse readily available over WhatsApp for questions and advice, especially in critical situations. This alleviates some of the emotional stress she faces.
To further reduce caregiver burden or stress, the programme provides enrolled caregivers with structured Parkinson’s care training which involves online and hands-on training designed and conducted by SGH’s multidisciplinary team and community nurses. Ms Goh’s domestic helper, a secondary caregiver, can also join Zoom training sessions for support and gain information on exercises and care tips for Mr Goh.
This has been especially critical in this period. According to Ms Goh, Covid-19 brought about a tremendous deterioration in her father’s health because she could not bring him out for social interactions or integrate with the community. “You’re just stuck at home. It was stressful for him. It’s also stressful for caregivers because we were all working from home… balancing having to jaga (look after) him,” says Ms Goh.
(Above) Nurse Goh conducts a routine check to see if the patient’s hands and fingers are stiff. At the same time, he trains the family’s helper Jendah to care for Mr Goh, who suffers from Parkinson’s disease.
But ever the optimist, Ms Goh feels that despite the negative aspects of the pandemic, it has also “propelled many things forward, including digitalisation. I sincerely believe telehealth is very good. And we should have more of that.”
Managing the Ups and Downs of Caregiving
At the end of the day, finding the positives in her circumstance has helped. “The journey these 10 years has had its ups and downs,” she says, “but we learn from the downs, and we celebrate the ups.”
Her best advice for caregivers: don’t self-blame and accept there is only so much you can do. “Don’t sweat over what we can’t do but open our eyes to knock on doors and seek help. Take time out [for yourself] as well — it’s critical,” says Ms Goh. Being by yourself and learning when to step out to recharge prepares you to “go back in again… and fight the battle, ever stronger,” shares Ms Goh.