31 October 2016, Feature
By Geraldine Tan-Ho, Counsellor (Star PALS, HCA Hospice Care)
The loss of a beloved child is the most devastating experience a parent could go through. Contrary to popular belief and teachings, there are no specific ‘stages of grief’ that a person will undergo after a loss. Rather, there are universal emotions that a bereaved person will experience, such as sadness, anger, guilt, disbelief and a great sense of longing for their loved one.
Grieving the loss of a child is a lifelong journey. This does not mean that the pain a parent feels, will always be just as intense as it was in the beginning. Many parents describe making meaning from their child’s life and death, finding inspiration from their child’s strength and loving personality and feeling gratitude from having time together with their child, no matter how short. These reflections help them greatly, in coping with the loss of their beloved child.
Grief is a multi-layered response to loss and is therefore not simply about having painful emotions, though these are generally the first to be felt. The sadness and pain of the grief journey is also often accompanied by heartwarming moments and memories, uplifting thoughts and revelations, as well as appreciation for life and the love received from supportive family and friends.
(Star PALS Memorial Evening 2016)
Just as how each parent’s love for their child is unique, so will their grief journey also be unique to themselves. Some general guidelines that may help in this journey:
Grief has no time limit
Expecting yourself to stop crying about your child or missing them in 6 months or 6 years after their death will simply put additional stress and other negative feelings such as guilt and anger on yourself (and sometimes others). Grief is a lifelong journey. Some parents find that their painful emotions come in smaller and less frequent waves as time goes by; others maintain that these emotions stay the same. Everyone goes through a different process – there is no ‘too short’ or ‘too long’ duration to grieve.
Give yourself permission to feel
There is no wrong or right way to feel after the death of a child. Some parents feel relief after a long and tumultuous caregiving journey, while others could feel numb and emotionless. Some parents feel disappointed with their child for ‘giving up’ after all their efforts for treatment. Others feel angry with God for allowing their child to die. Do not blame yourself for feeling what you may think are ‘inappropriate’ emotions. Should these emotions be overwhelming and disturb you greatly, talk to someone whom you know would be empathetic and non-judging.
Give others permission to grieve in their own way
Perhaps your spouse seems unaffected by your child’s death, going to work and watching soccer matches as if nothing has happened. Or perhaps your children do not want to talk about their sibling at all and you wonder if they even miss him or her amidst their busy school life. Not seeing others grieve the same way as us may feel isolating, confusing or upsetting. Keep in mind that everyone grieves in their own way and copes with their grief in their own way too. Give them time and space, just like how you would appreciate your own time and space to cope with your grief.
Spend time with yourself and others
The sadness of grief can be overwhelming physically, emotionally and mentally. Some parents prefer to fill their day with activities in order to distract themselves from the pain. Try to take some time to be with yourself and your emotions. This can be scary and painful, but suppressing grief constantly could be damaging to your grief journey in the long term. Because grief is unique and personal, other parents may find themselves wanting to be alone all the time because they feel that nobody would understand them anyway. Giving yourself the opportunity to experience love and support from those who care about you, can be a great source of comfort. Some parents who are not ready to meet up with family and friends find comfort in simply connecting via text messaging or social media.
Be aware of how you are responding to your grief
While there is no right or wrong way to grieve, there are times when the pain can be so intense that you may find yourself responding in ways that are harmful to yourself or others. This can include binge-drinking, being reliant on drugs and medication, having thoughts of harming yourself or others, or being unable to perform basic care for yourself (eg. bathing, eating). Talk to someone you trust or a social service professional if you find yourself or your loved one responding to grief in harmful ways.
Be A Source Of Support
If you know of a family grieving the loss of their child, here are 4 simple ways you can support them in their time of need.
You don’t have to ‘make things better’
We come with our own emotions and opinions about what has happened, or what should have happened. Be sensitive and respectful to the bereaved parent. They need our love and support, rather than opinions or judgments. Being with a bereaved parent requires an open mind and an open heart. Avoid using cliches like “Time will heal all wounds” or “Be strong, your child would not want to see you cry”. Be prepared to be with someone in great pain and instead of aiming to ‘make things better’, aim to be supportive and loving.
Talk about the child and use names
Some people are worried that ‘reminding’ the bereaved parent of their child would bring further sorrow to them. This worry is unfounded, because parents remember their children everyday, whether or not someone mentions them. Bereaved parents find comfort in hearing their beloved child’s name spoken and knowing that others remember their child as well. Talk about the good memories you have of their child, or respectfully ask them to tell you more about their little angel if you have never met them.
Ask them what they need
Trying to support a bereaved parent can be stressful if we are filled with uncertainties about what they need and how much we should do or say. The best way to eliminate unnecessary stress for both sides would be to ask them what they need. Simple questions like, “Would you be okay if I check in with you every now and then?”, “May I come to visit you this week, or would you prefer to let me know when you’re ready for a visit?” and “Would it be helpful if I bring over a cooked dinner for the kids every Monday?” help family and friends get a better idea of what their bereaved loved one really needs.
Understand that parents need time and space to grieve
Perhaps you are worried or even a little hurt that your good friend or close relative is not turning to you or not letting you visit them in their time of grief. Try to understand that this is normal and think of other ways you can show your concern and love. A simple check-in or ‘thinking of you’ text message can go a long way in giving a bereaved parent comfort. Respect their boundaries and they will contact you when they are ready.
(Source: The Barnabas Center)
The loss of a child is a life-changing experience. It brings uncharted pain, renewed self-discovery, meaning-making and unexpected insights. Whether we are making this journey ourselves, or sharing in a part of it, the grief journey of a bereaved parent is a sacred and essential tribute to the life and memory of a dearly beloved child.
31 October 2016, Feature
9 year-old girl, Sharon Callista Rain, suffers from bone cancer since September 2015.
Despite being wheelchair bound, Sharon’s maturity and bravery evidently shines through her life and never fails to brighten those around her. It is not easy for anyone to cope with an illness, what more for a young girl who used to actively model for children’s wear, swim, dance and run.
With her hair neatly tied back, big wide eyes behind thick, curly lashes, Sharon travels around in a wheelchair hugging her colorful “My Little Pony” pillow, all the time.
“I only like “My Little Pony”. I do not really like the rest of the cartoons. I enjoy watching Pony on Youtube. I also enjoy playing the keyboard,” says Sharon as she described her typical day at home. “In church, I play with Evan. She is my best friend. I love school and the best things about school are my friends. I like to play with them. I want to learn more. Maths and Science are my favorite subjects.”
Linda Rain, Sharon’s mother and sole caregiver accompanies her every step of the way. Her love for Sharon is greatly seen through her disposition and the excitement as she talks about her daughter’s experiences as a child model. Heartbreaks and uncontrollable tears stream down as Linda shares Sharon’s photo while she was still a young active model, participating in competitions and games.
On 9 Sep 2015, Sharon started feeling pain in her back. After visiting the doctor who prescribed her some medicine without detecting any serious illness, she went home.
However, on 27th September 2015, Sharon told her mum she could not feel anything in her feet. The doctor advised that her spine was infected.
They went for further checks and discovered that it was Ewing Sarcoma, a rare disease which is found in the bone or soft tissue. Surgery was performed in October 2015 and Sharon had to be hospitalized for a month. Chemotherapy and radiotherapy was recommended. However, there was still no improvement.
With the support of friends in church, their community and family, Linda and Sharon came to Singapore to seek further treatment in NUH. Both mother and daughter are now staying in a unit overlooking the reservoir surrounded by a vast area of greenery, while Sharon’s father, Richard Rain, the sole breadwinner of the family continues to work in Indonesia.
Linda is so grateful for the wonderful people who entered their lives. Sahabat Orang Sakit (SOS), an Indonesian community church in Singapore, has rallied around them throughout the whole journey. The assistant pastor, Ricky, has invited them to stay at his apartment in Singapore without any rental. With the support of their pastors and church members, the hospital bills were also well taken care of.
Sharon is also thankful for Star PALS for visiting her at her rental apartment and taking care of her needs and wants.
“Nurse Nicole from Star PALS is nice. She knows that I wanted to visit the Singapore River Safari and Zoo, so she planned an outing to for me, I enjoyed it! Kimberly, my Medical Social Worker is also nice to me,” shares Sharon in her own simple words of appreciation.
Since Sharon was two years old, she has been acting in Indonesia. When she was three, she started to model for children’s clothes, and often paraded and “catwalk” in shopping centres.
“I was her personal chauffeur, driving her to and from school during weekdays, and sending her to the modeling assignments and classes with Kumon during weekends,” jokes Linda.
“Daddy sent me to school, not you Mum.” Sharon gently interrupted.
The intimacy of this family is not lost on us. Linda and Sharon recounted the experiences and activities they used to enjoy together. Sharon not only knows how to catwalk, pose for camera, she can also sing, play piano, dance and swim. Talking about these activities brought a smile to her face.
With such talents, Sharon is planning to embark on a new journey to do a personal music video. As a nine-year-old, it is amazing that Sharon has overcome so many milestones, which clearly reveals a determined young girl who knows how to live life fully.
“We can only rely on God’s miracle. We came by faith and never in my wildest imagination did I expect such grace,” shares Linda.
“I don’t really care. God will decide how long I live,” added Sharon adamantly about her prognosis.
Although young, Sharon displays an amazing maturity in coping with life and death. Her faith is unwavering for matters that are beyond her control. In the meantime, she continues her life with passion, giving her best at what she enjoys doing and living life to the fullest.
Drop a note of encouragement to Sharon and her family at firstname.lastname@example.org. Visit http://www.starpals.sg/ to find out more about Star PALS, a paediatric palliative service under HCA Hospice Care.
03 July 2015, Feature
The award recognises healthcare workers who are inspirational role models possessing courage, dedication, selflessness, steadfastness in ethics, compassion and humanity.
We rejoice and celebrate with Dr Chong Poh Heng, Deputy Medical Director at HCA Hospice Care and Programme Director of Star PALS, who has recently been awarded with The Courage Fund’s 2015 Healthcare Humanity Award.
Besides his duties assisting HCA’s medical director in the organisation’s clinical work, Dr Chong founded, and now directs, Star PALS – Singapore’s very first paediatric palliative home care service which aims to improve the quality of life for children with life-limiting conditions.
Under Dr Chong’s leadership, Star PALS has grown from a 2-person team to a 10-person multidisciplinary team comprising doctors, nurses, and social workers that has served 170 young patients and their families over the past 3 years. Dr Chong’s dedication goes beyond his front-line work – he also participates in advocacy efforts such as the paediatric and young adults ACP task force.
Dr Chong’s commitment to achieving this mission for each and every one of his patients and families is what distinguishes him as exemplary. He never fails to go the extra mile, visiting his patients often not just to relieve the physical symptoms of the children, but sometimes simply to assuage concern. He believes that no child should die suffering and actively implements initiatives like respite care to lighten the burden on these families – emotionally, physically, and financially.
“Doing the work we do, we also have to believe in miracles. Faith is believing. Only if you believe will you look at each situation and really put in your all to work towards it,” Dr Chong said.
More than just being a healthcare worker, Dr Chong goes beyond, winning the hearts of many patients and their caregivers through his actions. “Dr Chong genuinely wants to know what we need, and what we think is best for our own family,” a caregiver shared. “He doesn’t lead us, or smother us by telling us what to do. Instead, he walks with us and gently guides us to express what we really want – which is something we don’t always know! Where can you find a doctor like this?”
He has taken on many roles as advisor, confidante, advocate and friend. On several occasions, Dr Chong has played event coordinator, granting the wishes of his patients by organising birthday parties and outings, regardless of the challenges faced. For example, it may have seemed like an impossible wish for a morbidly obese patient relying heavily on life-support machines to visit the panda Kai Kai at the Singapore River Safari, but Dr Chong made it possible by arranging for the necessary equipment and support. Wishes were fulfilled, beautiful memories etched, and joy added into the lives of his patients and their families.
More often than not, he finds himself learning life lessons from the children under his care. These children, he says, often show a resilient strength, with hope for the best of what they have left. “That is where I find richness and continue doing the things I do,” says Dr Chong. He shared an encounter with a patient who worried more about his family’s well-being than his own condition, and asked Dr Chong to take care of his family. Dr Chong could not express in words the emotions this stirred within him.
Once again, congratulations Dr Chong! Your selflessness and genuine care for the patients truly deserve our admiration and respect!
HCA Hospice Care is proud of its dedicated and compassionate clinical team! Do email us at email@example.com if you have any good feedback, or words of encouragement for Dr Chong, or any other of our other staff members.
By Stella Kew
No one should ever believe that palliative care is a dead end! It’s a helping hand, a guiding light, a ready friend – no matter what the condition of its patient.
Our little girl, Lois, was diagnosed with cerebral palsy when she was born. Because of her delayed development, she needed a nasogastric (NG) tube for feeding, and fell ill often.
That NG tube especially was a huge obstacle for us. We took Lois home when she was three months old, but found it almost impossible to insert the tube. Would you believe that I used to bring Lois all the way to the National University Hospital from our home in the east, just to have the tube inserted?
I didn’t have any choice at that time, because I was afraid of hurting her. The many warnings about what could go wrong made it so much more stressful.
Then, in December 2012, a host of angels stepped into our lives: Dr Chong, Nurse Lily, and later, Nurse Serene and the rest of the Star PALS team. It was so reassuring to know that I could call them whenever I had any struggles, and receive guidance and help right away.
The team increased our confidence with handling Lois by sharing their knowledge and expertise with us. Dr Chong was the realistic one who kept us informed on what we should expect because of Lois’s condition, while the nurses were a great source of positivity who would always keep our spirits up and our hopes going.
They didn’t just draw the line at caring for Lois, but took good care of our whole family. They would shower attention on Angel, Lois’s older sister, during their visits. When they noticed we were especially tired, they would automatically arrange sessions with the Medi Minders so that we could take a break.
The Star PALS team has rejoiced with us during all the joyful moments: seeing Lois get weaned off the NG tube and begin eating on her own. They were there to watch our mischievous daughter learn to pull Angel’s hair, babble, walk, and now, become Star PALS’s very first graduate!
Now that Lois is officially discharged from the Star PALS programme, we look forward to her next milestone. We hope she’ll be able to speak soon, with help from the early intervention programme at the Cerebral Palsy Alliance School.
I’m a great advocate of palliative care and Star PALS now. Whenever I meet other parents in a similar situation, I’d immediately start asking, ‘Have you heard of this service? Have you considered getting help from them?’
That’s how much the service has helped our family.
10 March 2014, Feature
It’s natural to want to protect our children from what we ourselves are often afraid of. However, professionals agree that it is often better to be honest and open with them on the subject. In fact, studies unanimously show that children often know more than what we think.
While the whole subject definitely depends on the child and family in question, here are some pointers we’ve gathered on how the topic can be introduced gently to our children.
1. Honesty is the best policy.
The unknown is frightening, and a lot of unnecessary anxiety may be caused by what a child imagines from stray words he catches in hushed conversations, or from the unhappiness he observes in his caregivers. Explore what he already knows, move on together, and both adult and child will feel far less alone from there on.
2. Don’t beat around the bush
Euphemisms like ‘gone away’ and ‘going to sleep’ are confusing for children – and we wouldn’t want them to associate a travelling parent or bedtime with death! Experts advise using straight-forward words like ‘die’ or ‘dead’.
3. Keep with the ages
Children understand the concept of death and dying differently at different points of their lives. Young children might still believe that death is reversible (no thanks at all to violent cartoons) and, with ‘magical thinking’, may even feel responsible – it’s crucial to reassure them. An older child may on the other hand prefer to have factual information.
4. Strike when the iron’s hot
It’s best to leverage on a child’s curiosity, especially when it’s directed elsewhere that’s more impersonal – it could be a dead insect he may see, a dying plant, or something on TV. Conversely, there may be times when the child is fidgety, or refuses to make eye contact – classic signs of discomfort, and indicators that the topic might be better off dropped for the moment.
5. Love is all you need
It’s important to ensure the child knows that he or she will continue to be loved and cared for. It helps to validate their emotions with language and sympathy, and for the child to be able to communicate his or her feelings through play or art therapy.
A recommended picture book for younger kids is Nana Upstairs and Nana Downstairs.
Sources: Journal of Clinical Oncology, ehospice, cancer.net, webmd.com,
18 January 2014, Feature
By Geraldine Tan
Being a Medical Social Worker in Star PALS means more than providing financial assistance, community resources and counselling to patients and their families. It also means being a furniture mover, a grocery shopping assistant and a house cleaner.
It means singing silly songs, helping with the cooking and playing Pretend. Memorizing the names of K-Pop celebrities, drawing pictures of lions and monsters and learning how to play football.
Being a Medical Social Worker in Star PALS also means being 24/7 on call, to attend to patients and their families when they need me whether I am in a movie or a meeting, awake or asleep.
It means holding crying mothers tightly as they try to come to terms with the latest medical test results, listening to grieving fathers haltingly tell their stories, and deliberately giving siblings the extra attention and care they inevitably crave. It means knowing that some patients do not have long with us, and giving my heart to them all the same.
Being a Medical Social Worker means incidents like standing in front of our patient’s coffin with her mother, at her wake. Her mother clasped my hand in hers and spoke to her child, “Now that you’re in heaven, please keep your social worker jie jie safe and happy and healthy always, because she is our angel.”
Geraldine Tan, MSW for Star PALS, shared her experiences for an exhibition by Singapore Discovery Centre: Hope. Heart. Home. These photos were taken by Bob Lee for SDC. The exhibition will be at J CUBE until 15 Jan, and will then move to Temasek Poly, UniSIM HQ, ITE College Central, and Yishun JC.