“Come on in,” Calyn calls out to us with a wide warm smile. Her home is neat and cozy, the walls decorated with large posters of Bible verses and crosses. There is a hospital bed on the side of the room where Joshua sleeps. Calyn holds his hands and gently strokes his hair, before giving him a loving kiss.
“The moment I laid eyes on Joshua when he was born, I felt love,” said Calyn. She and her husband were filled with joy at the sight of their only child. Around the age of four though, they noticed something not quite right with Joshua’s development – he couldn’t speak yet. After several trips to the hospital, Joshua was diagnosed with a condition called Global Total Development Delay. The doctors tried several forms of treatment. “I worked full time, but when we discovered that Joshua was suffering from muscle degeneration, I quit my job to take care of him,” says Calyn.
It wasn’t until a few years later that the doctors discovered that Joshua was in fact suffering from a rare and incurable disease that affects his DNA. MECP2 Duplication Syndrome is a condition that occurs almost exclusively in males and is characterised by moderate to severe intellectual disability. Due to his condition, Joshua suffers from weak muscle tone, feeding difficulties, absent speech, seizures and muscle stiffness (spasticity). He also experienced a delayed development of motor skills such as sitting and walking. He cannot walk or sit up without assistance and suffers from recurrent respiratory tract infections, a common symptom of the illness.
Calyn found many doctors shrinking away from her son’s case. It seemed as though the doctors felt their time was wasted on attending to Joshua, since there is no cure available.
Today Joshua is 14 years old. He cannot communicate or comprehend what is said to him and is completely bedridden and dependent on his carers. Bringing up Joshua under these circumstances have not been easy on Calyn and her husband, they have had a fair share of bad experiences at hospitals. She recounts numerous times when she sought treatment for Joshua’s symptoms – epileptic fits, pneumonia or chronic phlegm blockages that caused him breathing difficulties. Calyn and her husband had to struggle to get Joshua treated because medical professionals kept trying to convince them to ‘give up and let go’. Calyn’s answer was always the same: “We do not have the right to take away his life; it is not up to us to do that. If God wants to take him away, I am fine. I do not want him to suffer too much. But if I can help him to ease the pain, and suffer less while he is here, I will always do it.”
A Daily Affair
Caring for Joshua has inevitably taken a toll on Calyn’s marriage. It has been over five years since she and her husband have gone out for a movie or attended any social events. But they have learned to accept these setbacks, and their love for each other and Joshua remain unchanged.
Calyn feeds Joshua at three-hour intervals every day. She then gives him massage therapy and exercise to prevent muscle degeneration. “I do this at least twice a day. If he is asleep, I don’t disturb him,” adds Calyn. If he has excess phlegm build-up, she uses the suction machine to clear it. Joshua receives food through a feeding tube that needs to be cleaned regularly. In the evenings when his father returns, they both carry Joshua to the bathroom to bathe him. “We take turns. When my husband gets home from work, he helps me take care of Joshua. He does a great job of caring for Joshua. He is a supportive husband and father, and loves Joshua very much.”
There is no indication from Joshua on how he feels or if he understands them. He is unable to communicate verbally or physically. “We already know roughly if he is happy or not happy, if he is comfortable or not. He can make grunting sounds, so I know when he is in pain,” Calyn shares. “That doesn’t stop me from talking to him, I constantly talk to him!” She hopes that Joshua understands her on some other level, if not verbally. “Spiritually, he can understand what I am saying, he can feel the love from my husband and me,” she adds, smiling.
A Life-Changing Referral
Joshua was referred to palliative care from a doctor at HUKM. “The nurses Vicky, Rachel and Dr. Lim make sure we are okay. If I’m at home struggling with his oxygen tube, or suction machine, they tutor me over the phone and are on call 24 hours a day. They are so helpful and put our mind at ease. Sometimes they supply medication, they teach us what needs to be consumed and how. They even help us navigate the medical system – writing a letter to the doctor if we need to visit one at the hospital or clinic. I feel that I have greater support in caring for Joshua.”
“I have learnt how to care for Joshua after years of observing nurses at the hospital. Sometimes, when your child is uncomfortable and needs medical attention, the wait is long before a nurse can attend to him, especially at government hospitals. As such, it’s better to do it yourself,” Calyn recounts. “Things such as changing his tube, using the suction machine, physical therapy – because I know I need to make sure he is comfortable. If I can do it myself, I don’t need to rely on others.”
“I have conquered the hard times; my life is much better now. I feel I can cope better, it’s not difficult anymore. When Joshua was younger, I was always in a panic, I didn’t know how to handle it! I really wanted to the best for my child, I was so pressured. I feel more comfortable now”, Calyn says happily.
The Need for Palliative Care Awareness
From her experiences, Calyn has found that rarely would a doctor want to conduct home visits – she asked and was politely declined. According to her, doctors in government hospitals have too many patients and too little time to entertain phone calls. Getting Joshua into the car and to a clinic is not easy, and having to do that every time he has a fever or difficulty breathing can be rather stressful.
“It is so comforting to know that I can rely on the palliative care team. That’s why I hope that awareness for palliative care and what it can do to help is more apparent in this country. There are so many people that need help and guidance,” she says.
“People constantly ask me, what is a hospice and palliative care? It’s so sad they do not know. Perhaps in other countries, the awareness is there, and they benefit greatly from it. The government here, it’s really not on their agenda,” Calyn laments. “I have been greatly supported throughout this journey. The palliative team comes over, they talk to me and comfort me, support me mentally and console me, tell me what to do to prepare myself.”
Years in hospitals have given Calyn some insight into the lives of those dying from life-limiting illnesses. “They go through so much needless suffering before passing away. Palliative care providers are the ones who are there to help them, to provide support, relieve unnecessary pain,” shares Calyn. “The palliative care team won’t give up on you – they drop by to see you at home, to relieve their suffering, talk to the families and prepare them for what is to come. All these things are so important!”
“I don’t know if I would be able to cope with caring for Joshua without the support of palliative care. Joshua is so comfortable at home. We haven’t been back to the hospital since we were connected with Hospis Malaysia almost three years ago,” Calyn says with a smile. “I think the most important thing is that he feels comfortable, and he does. We are truly blessed.”