A brief timeline of what happened during the last 3 weeks of Ibu’s life.
Ibu’s FB status:
“Alhamdulillah, ku masih berpuasa hingga hari ini. ku rasa bahagia dpt menjalaninya. Cuma ku sedih jauh dari bazaar kueh. Di Woodlands tak macam Tampines. Segala kueh ada , aku rindu kueh Jongkong, epok-epok sayur bedah kueh talam macam-macam talam, karipap mama hoi…. Selalu lepas terawih pasti makan kueh, kini sepi tiada kunyah-kunyah. Sedih juga bila dah duduk di sini. Segalanya ke Geylang.”
Me & Ibu (on a wheelchair) off to Geylang. She wasn’t well but was determined to go out of the house after cooping up for a week. She was already weak and the cab driver asked me shouldn’t we be going to the hospital instead. We smiled. By now, Ibu found it difficult to hold her head up straight and ended up slumping over. Bought a lot of food, groceries etc. 4 kuih jongkong, 2 somsom, 2 paket ondeh-ondeh, pisang untuk masak pengat. Berkilo daging dan ayam, enough to last us till the end of Ramadhan. Geylang will forever hold many memories of me and my mom. It was our favourite haunt.
We all iftar-ed at Nusa Idaman, Johor. Once again, Ibu wanted to eat a lot but she could only taste some food.
In the morning, Ibu looked pale. I alerted my dad that we should bring Ibu to the hospital. Ibu was angry and refused to go to hospital. Nonetheless, all of us rushed back to Singapore. Ibu told Atiqa that she won’t be returning to Nusa Idaman anymore. Physically, Ibu was increasingly tired, more easily “wiped out” after simple activities (i.e.interacting) or even short outings. We went home because Ibu wanted to go home. Ibu had more headaches. Sepanjang malam tak tidur. Baring bongkok bangun toilet setiap lima minit – dari 11 mlm hingga 5 pagi. Kalau bersuara baru Ayah hantar. At night after terawih, we rushed Ibu to KKH A&E when she was in pain. Unfortunately, Ibu’s vein declined the IV drip. The veins had ‘died’ due to the chemo treatment. Ibu was diagnosed with UTI. Pulse rate 47.
At home, Ibu’s body declined all her medication but she said to Atiqa everything will be okay and told her to be strong. However, Ibu kept going to the toilet, was disoriented and couldn’t communicate. Several times we found her crawling to bathroom when we left the room just for a minute. Our understanding is that the disorientation was caused by decreased blood flow to the brain as the body began to slow down. Ibu terjatuh semasa ulang alik ke tandas. Terkena kepala. Tapi masih mahu tetap ulang alik ke tandas. Ibu lemah. Tak larat nak bangun tapi masih nak ke tandas. Kami cuba angkat tapi ibu berkeras nak bergerak sendiri. Dan kini ibu mula bingung tentang waktu. Urgent call to HCA to come down asap. Got the assessment and HCA recommendation for hospital admission. Ibu was warded and monitored. It was heart-wrenching to leave her at her ward knowing that she was disoriented, kept requesting to go to the toilet for no reasons. We left her at 1030pm. Got a call from the hospital at 1115pm, she was pushed to ICU – everything was downhill. Pulse rate 36.
Had dialysis and other recommended treatments to aid her. Everything was given via her throat, since the doctors could not find a proper vein..
Ibu woke up better and requested to meet all her good friends. She refused further treatment.
She dreamt of a man in jubah. She kept calling out to her mom and also Ayah. Her bowels’ now was greenish black in color. Now, Ibu was bed bound and required help even to turn over. Her spirits were at rock bottom. She could not do anything without help. We had a family conference with the medical social worker who happened to be Hakim’s friend.
Ibu had sweet dreams and kept passing motion. Doctor was comfortable to release Ibu on Monday. Doctor said, with Ibu, anytime she can go. Ibu was now not fit to even sit upright. Discharged via ambulance. Doctor recommended hospice care – more frequent visits and they will be activated on standby. So that if anything happened, certification would be easy.
Ibu cried and claimed that she could not see her nose. She wanted to go home immediately. That afternoon, she was ambulances home. Suddenly, she wanted to go back to Johore.
Ibu no longer wanted to be want visited by friends. She was now bloated. Her kidneys slowly began to failed. Built up toxic in the body. After Asar, Isya dreamt Ibu passed away. Ayah: Ibu sepanjang pagi menangis mendesak ayah & atiqa untuk ke toilet. Berikan alasan cara rasional >; lemah, jatuh jika disuruh. Kuatkan semangat dengan kerenah ibu. Insya’allah. Ibu suruh tqa/hakim/sesiapa yang baik hati cuci langsir kat luar. Nanti adik beradik ayah ko juga yang datang. (satu imbas muka tentang pemergiannya).
Ibu was determined to fight on as the water retention in her body reduced bit by bit. Temp 35.5. Hypothermia.
Her stomach and head were still bothering her. She could not get comfortable in bed as much as she tried. Ibu was back at KKH. Ibu slept alone. Ibu hated being alone in the hospital. During the course of her illness, one of us would usually spend the night with her so she wouldn’t be lonely and would feel safe. This time would be different. We all went home. It was hard but we needed to rest for the battle ahead. Ibu had been refusing any medication, always lashing out at us, tried to get up and wouldn’t stop talking. She talked of seeing too much and talked of how her children had betrayed her. All I can tell you is that it was the most disturbing time of my life. At one point she called me by name and she said, “I want you to go home and I don’t ever want you to come back. This is something you will never get over.” Of course I didn’t leave and I know, I will never get over it. And I hope I will help others with the sharing of our story. I kept reminding myself to be patient. Ibu was in extreme pain and yet she did not want to take any painkillers.
Ibu was wondering why she was still here. She kept having metal piercing pains on her right side. We had another family conference on how best to take care of Ibu. Physically, it was a non issue. Ibu’s emotional needs needed a lot of tending to.
I met a cancer patient, Ms Ong, who happened to be warded next to Ibu’s bed. She talked to me. She’s 60 year old. Sebatang kara. Breast cancer stage 4. Removed both breast. Dia kata masa Ibu jumpa Allah dah nak dekat berdasarkan on her chinese tanda-tanda. Dia kata insya a’lah ( pelat sikit bunyinya) Ibu balik pain akan hilang. Dia berbual dengan mereka yang meninggal dunia kerana cancer. Usually the pain will go pada saat itu. Balik kasi ibu makan yg terakhir. Tanya wat she wants. And lepas tu Ibu akan go. Dia mahu pulang tetapi katanya Allah mungkin ada plans untuknya kerana belum lagi. Dia kata sakit kanser ni sakit sekali. Hanya yg melaluinya tahu. Cuma dia gembira ibu masih alert menjelang ajal.
“We all pray to Allah. He has plans for us. He will decide when we can go home once his plans for us complete.” Kata-kata yang bermakna daripada seorg pesakit kanser kepada pesakit kanser yang lain. She looked younger because belum kawin. Her dad meninggal tahun lepas kanser. She asked us to check becos it’s better so that we can better prep. Health is impt. She reassured us that no amount of morphine was going to help Ibu, She’ll be in Ibu’s stage in a month’s time. Alone yet positive.
At home, Ibu had orange juice and a taste of Mi soto. HCA came. Ibu’s body refused the urine catheter. We had another family conference. We were told that we’re running out of time. That night, I and Atiqa slept with Ibu. It was tough. Ayah had to take over at 3am. She was in pain. She clenched her teeth till they bled. She cried and wanted us to bring her to the hospital. All we could do was prayed for her.
Ibu took out her dentures. Suddenly, Ibu did not know how to use the straw. Ibu was very tired. At times, Ibu was aggresive. Ibu had asthma like breathg. She only ‘ate’ 2 grapes and some drops of water. Her speech had slurred and her snores were loud.
Pain. No turning. No pampers. Sleep. Dazed. Calmer. Smiled. Dr Chong Poh Heng came (See letter of appreciation). She was put on patch. After maghrib, we had a family conference about Raya with Ibu on her bed.
“Dengan patch tersebut, Ibu kini rasa lebih sihat. Dia ingin bermain dgn cucu-cucunya yg dirinduinya. Semalam, dia kata ada dua budak perempuan berpakaian baju putih menolongnya. Dia cuba kejutkan Ayah tetapi Ayah ngantuk. Kini Ibu sedang berfb ttpi dia sedih matanya tak boleh baca status. Dia salahkan cermin matanya yang sepatutnya ditukarnya dulu. Ibu tanya adakah esok raya? Hakim cakap macam esok raya. Kalau niari holiday kenapa hakim tak datang?!” Anyway, Ibu said terima kasih to me. Hari ini ibu tampak lebih tenang, gembira dan bertenaga. Pagi tadi, ibu gosok giginya dengan berus sendiri. Semua gigi yang patah telah dikeluarkan. Ibu gembira dengan perubahan badan yang semakin ringan. Dia gembira Dr Chong menepati janjinya. Hari ini juga ibu makan lebih daripada biasa. Mood baik ingin jumpa cucu. Mungkinkah ini yg dinamakan the surge of energy? Wallahu alam.
Ibu penat, tidak mahu mandi, bisa, banyak lendir di tekak. Mahu tidur. She mumbled,”setakat ini sahaja.”
Ibu tidak boleh menelan, Ibu cuba telan roti kirai lepas maghrib 13 Aug. Busu datang untuk mengurut. Kaki lebih kurus. Ibu kini itching and like to pick on linens. Bed sores. Ibu asyik mengigau ingin balik. 15 Aug, Ibu menjerit ketakutan. Diberitahu ada seorg lelaki tinggi lampai dan bertubuh besar memakai jubah sambil memegang sabit berjln lalu. Walahu’alam.
Ibu minta dipakaikan baju kurung and mendengar lagu Raya.Sepanjang malam nak balik. Nak balik ke rumah.
Pagi, Ibu mahu minum air pepsi dan teh tarik. She wrote a list of things for Ayah to buy at pasar tani. Tetapi jam 10 pagi, Ibu panggil ayah. Ibu kata esok pergi pasar tani bukan niari.Ibu asyik suruh ‘sesuatu’ sabar dulu. Ibu asyik suruh Ayah balik cepat. Ibu kata sakit sangat. Ibu kata lamanya Ayah nak balik. Ibu menangis dan asyik menanya kul berapa. Mengucap, repeat mode. Everyone came home. HCA Irene came and could not do much except try to make Ibu feel comfortable.
Maghrib: All 4 of us, siblings, had a family conference with Ibu, By now, Ibu was very weak. Ibu made all of us promised her some things. It was really sad. The time she said ‘Terima Kasih’ to me as I kissed her, brought me to tears. I hope she knew I took care of her out of love. It was not about duty. She was half of my soul. The day she left, I lost half of myself.
Night, Ibu was still restless and agitated, all the way till subuh the next day.
10am, Ibu was cool. No longer any involuntary movement during sleep. As Atiqa bathed her, she seemed to be relaxed.
1130 am, Ibu passed away when it was Ayah’s time with her. She was buried on the eve of Raya. Alfateha.
Why I do blog about this? I hope my timeline would help others who seek to know how much time their loved ones have left and what to expect. While the end stage path varies from person to person, there do tend to be commonalities that can help us to “see what we’re seeing,” and often, to estimate how much time might remain. For more information, the following link might be helpful: http://www.brainhospice.com/SymptomTimeline.html