I would like to take this opportunity to share my experience in caring for my father and how Hospis Melaka has helped us.
My late father Md Jais Bin Jaapar was 74 years old when he was diagnosed with Stage 4 Bladder Cancer. I can still vividly remember the day as it falls on the 1st day of Ramadhan. Needless to say, it feels like the worst day of my entire life. When we received the diagnosis, the Big Bad C has spread to the lungs, liver, bone and his prostate.
Our journey began in February 2018. It has been a very difficult journey as my father had the bladder tumour removed and later his condition deteriorated. We consulted with Dr. Nonis from Pantai Ayer Keroh for further opinion and management on 7th May 2019. And after further discussion, we agreed to have Radiotherapy treatment for my father to treat his bone, prostate and bladder. His 1st Radiotherapy treatment was scheduled on 13th May 2019 but was delayed as he had hypoglycemia (2.6 mmol) and was admitted for 5 days. His 1st radiotherapy treatment only started a week after his discharge. After the treatment, he suffered a whole lot of pain. On 21st May 2019 after the 3rd Radiotherapy, he was admitted again due to shortness of breath and hyperglycemia with a reading of 32.5.
Subsequently, Dr Nonis referred him to the Physician, Infectious disease and Respiratory specialist. On the 2nd day of his admission, we were informed by Dr Nonis that my father was actually under palliative stage and would not survive long. When he mentioned that this year Raya would probably be his last, we could not accept it. We could not tell him the truth either and being me, I just could not hide my sadness & grief in front of him. We had to act normal in order for him to feel better, but it was too hard to pretend and lying to the person I always love the most. He keeps on asking questions as he was so curious on what was happening to him, but most of the times, I would just feel loss at words.
Dr Nonis referred him to Hospis Melaka on 17th June 2019 and we had received the 1st visit from the team on 20th June 2019. Ms Chong and her assistant interviewed us on my father’s condition and provided him with the moral support. At that time his blood pressure was dropping gradually every day. We were worried over the falling blood pressure and were wondering whether we should continue or stop the blood pressure medication. Hospice team then advised us to stop the blood pressure medication as the level was very low at that point of time. With Hospis Melaka visits it has helped us a lot to minimize our time to get consultation from Dr Nonis. We feel blessed to have the facilities/services at our home from Hospice team. Since the day his condition deteriorated on a daily basis, he kept on asking to meet up with Dr Nonis to get the consultation. Hospice Melaka’s visit is considered by my dad as 2nd layer of comfort reference. He felt more confident when he meets up with medical professional/experts in helping him.
The 2nd visit by Hospice should have been 1 week after the 1st one which was on the 27th June, however Ms Chong and Dr Azian came to visit 2 days earlier. On that day his condition was very poor compared to the previous week. His urine volume was stagnant for 2 days straight and had turned to brownish color. During the visit, Dr. Azian examined his abdomen and there was no evidence of urine retention. Family was still concerned that tube maybe blocked. Ms. Chong changed the catheter to a new one, however, the situation stays the same even after the catheter change and there was no urine flow. At least after the catheter has been changed, we don’t have any worries anymore regarding tube blockage... but it’s a signal the time is near for him to go.
My father also did not pass motion for a week and was restless the whole time and cannot sleep. The abdomen was examined by Dr. Azian. It was distended and enema was given but there was no passage of stool.
He was also very breathless and in pain when the team arrived. He was using oxygen concentrator yet he was still breathless. Ms Chong commented that his breathing is laboured and the oxygen concentrator is not enough for him and suggested changing to pure oxygen from the oxygen cylinder which we kept as standby. His breathing became less laboured and he looks a little bit more comfortable. My dad is already on oxycontin for pain from Dr. Nonis. A phone call was made to Dr. Nonis by Dr. Azian to discuss regarding supply of syrup morphine which will help both the breathlessness and for pain when necessary, and also a referral letter to Klinik Kesihatan for subsequent supply of medications. We felt so thankful with the assistance of Dr. Azian. With her effort and advice, we tried our best by providing him the best medicine and care, and he passed away with lesser pain.
Dr. Azian also explained to us that my father’s condition was critical in which the kidney has shut down as evidenced by no urine output and also there is no faecal passage. She informed us that he was practically in borrowed time. It feels like she can foretell, because on the same day at 9.45pm my father peacefully passed away surrounded by all family members. The final words from Dr. Azian, regarding my father’s condition that he is on borrowed time, made us feel so sad and we broke into tears. But these words helped everyone in the family to be prepared and most of the time we make sure someone was besides him.
There’s no more pain…..for him…though painful for us. Only 51 days, but I am so lucky to get the chance to fully take care of him. Alhamdulillah I feel so grateful for the chances. Thanks so much to the Hospice team for your support. Thank you to Dr Nonis and the team from Pantai Ayer Keroh. If not too much to ask, please send my prayer to my late father, Allahyarham Md Jais bin Jaapar.
Finally, I would like to say... Hospice Melaka provided us the best support to take care of palliative patient. If the doctor recommends you to engage with Hospice you should grab it. They have a lot of experience in handling palliative patients. It will minimize your stress and worry on any difficulties related to medical issues
