Author Archives: Linah Sofi

The End

I apologize before you start reading. This will be the longest most detailed entry of all three. See, the first two parts of this experience, I was only telling you events that I mostly learned through my siblings. We were in a WhatsApp group that was only dedicated to reporting my dad’s health. So, I wasn’t there for him most of the time. But for this entry, I was thankfully there until the end.  

So far, my father was able to walk around, pray standing, and go out, except for those times he felt weak. Gradually, my dad was getting weaker. By the end of 2019, he was stationed between the bed in the living room, and his bed in the bedroom, he was no longer able to sit or stand like the rest of us. Occasionally, he would join the family over meals around the table. Let me remind you that he acted tougher than he was actually feeling. Rapidly, his appetite declined, so he rapidly lost weight. 

During the first week of January 2020, which was the last time I saw my father on a video call, he seemed smaller. He was standing in the kitchen when they handed him the phone. He was wearing many layers, he seemed cold. The phone call didn’t last more than a couple of minutes. He looked a bit weaker than his normal self, but I was already informed that he was not feeling well since my grandmother passed away. His mental state manifested in physical deterioration. Days passed. I learned about bringing a hospital bed because he was now finding it difficult to get up.  Excuse me if my timeline is a bit off, but at some point in January the bed in the living room collapsed. Now, he was spending most of his time in the bedroom. He was seeing less people. As I learned later on, he requested to limit his visitors to his siblings only. He was losing the battle and he knew it. He accepted it. His only wish was to see me and my sister, who studies in the UK, for one last time. But he had always prayed to bring us all together once again in Paradise. 

On Sunday January 18, mom called when I was with my friends at an Irish lounge in Oakland. We were there for the live Irish music night. I picked up the phone and took it outside. I remember walking around the corner, talking to her for 10 minutes. Then she just hung up! I didn’t ask to speak to dad, she didn’t hand the phone to him. It felt weird! It was about time since it had been almost 3 weeks now since the last time I spoke to him. I brushed it off thinking he might’ve been sleeping or praying. 

I didn’t give that much thought until the Tuesday after. Ruba sent a message on our whatsApp group asking if dad was okay. She just finished a call with him and can’t figure out if his shaking voice was due to illness or crying. Then she asked Dina if she should change her flight booking to the earliest Saturday. I added my concerns about them downplaying the situation. I expressed how I found it weird that mom didn’t hand the phone to dad last Sunday. Dina’s reply was that of a YES! They were downplaying and ignoring the situation. It didn’t exist that way! So we both asked her to book us flights on the earliest Saturday. Mine was a one-way ticket!

It was the most stressful week of my life. It was not fun to rush packing, not knowing exactly how long I would be there in Saudi, pausing my life here in San Francisco. I informed my workplace. I told them I was going indefinitely. I said my quick goodbyes. They reassured me that I would still have a job whenever I decided to come back. It was a reassurance I needed in a time of uncertainty. Well, I was certain my father was dying, I just didn’t know when!

I had never comprehended how scrawny my father had become until I saw him for the first time in six months. Six months had passed since I said goodbye and promised to come back. I will never forgive myself for breaking that promise, for losing my green card, but no child ever realises that they might lose a parent. Ever. 

Earlier in October, when my father was yet again hospitalized, Dina called me asking if I had a minute to talk. She wanted to brief me on a family meeting they had with dad’s oncologist. Ruba, who was there at the time, wanted to understand more. Ahmad wanted everything explained to him from scratch. He actually demanded that the doctor treats him as a dumb 10 year old who knew nothing. See, the medical staff at the hospital always assumed that we knew what was up. We had access to his medical records 24/7, but to think that we were oncologists too? That was not very professional from their side. Even my father was frustrated with the fact that no one was telling him what was up! Learning about dad’s illness, and talking to him about it are completely two different things. The latter is the medical staff’s job! We were not supposed to explain to my father what was going on. A family should never tell their dying loved one that he was dying, and only had a year at best! That was the gest of Dina’s phone call. My father had a year at best since the time he was admitted in June, which meant at best, he had until June of 2020! I wanted so bad to go back home, I wanted to be with dad. I regret the fact that I didn’t. I really do. 

When I landed Saudi Arabia and went straight home, I saw my father lying in bed, barely speaking. He smiled, I hugged and kissed him. I cried. I cried because I realised he was rapidly deteriorating. But I had to hide my cries. He didn’t want anyone to cry in front of him. He asked us to smile and laugh around him. I could imagine how hard it was when he realised he was dying, and then his loved ones were crying around him. He was already terrified, he didn’t need a constant reminder that he was leaving us behind.

My father’s feet were swollen from the built up fluids. It was a result of liver failure. I saw his body was skin on bones. I saw him fragile, sleeping all day and night, in constant need for foot massage, needing mom’s help to go to and from the bathroom.

Let me tell you about mom. She was a true champ through all of this. She’d stuck by my father day and night. She tolerated his aggression, which was a result of deterioration. She, although suffering from neck, back and arm pain, helped get him up and lay him down. She fed him when he started to become too weak to lift things up. She massaged his feet to relieve the pain caused by the fluids. She stayed with him day and night. She wasn’t worried about how that would affect her health or her herniated neck disc. She stuck and refused to rest, even when he was finally hospitalized on his deathbed. She slept over, spent all night with him every night for 20 nights, from 9:00 PM to 10:00 AM. And just so you know, the room he was hospitalized in was in the ER. He never got admitted to the oncology suite. 

Two days after we arrived, when my mom asked me to feed dad some soup for the first time, he started aspirating. It felt like food went down the wrong tube. I panicked, and I called mom. He couldn’t stop coughing. He was too weak to cough strongly. So we figured maybe we should raise the back of the bed higher when we feed him. I remember later on he asked for tea and insisted on hold the mug himself. I remember my heart was aching seeing him struggling to drink it. He loved tea, and his tea time and cup were precious rituals. Later on, he started shaking in pain. He asked for oral morphine. Then calmed down.

We asked a doctor-friend to come over to check on my dad’s liver function. He is a specialist in liver disease. Ruba wanted an expert opinion on dad’s toxins level and how to get rid of them. Those toxins that his liver wasn’t able to process got trapped in the body and bloodstream causing him fogginess and confusion. We wanted to know if there would be any chance to get him on a drainage catheter through the liver. We wanted to know if my dad’s laxatives were working, or if we had to change them to a stronger one. The doctor who visited told us that we might be looking at a drainage, but first we need to put him on a stronger dose of laxatives, and to wait for two days to see how he would  react to them. If that hadn’t worked, we would be looking at a catheter. The sad part was never getting to know if the stronger dosage worked. 

The day after, dad suffered from sudden shakes with aspiration. We thought he was dying. Everybody was around him crying. I remember my aunt coming over to visit. I remember my nieces and nephew playing around. I was standing by the exit door to the staircase. Ruba came out of the room asking if we should call an ambulance. We all were not sure if we should. Well, he never wanted to go to the hospital in the first place. He wanted to die in the house. So we were trying to decide respectfully. We didn’t know if it was an actual pulmonary problem, or just food going down his windpipe. I finally assertively said I would call the emergency line and get an ambulance, and if there was nothing, woopdidoo! We inconvenienced them! Ruba asked me if I wanted to come into the room and say goodbye to him, I collapsed saying “I can’t” repeatedly. It was silently chaotic! I called on Dina and asked her to go to dad’s room and check on him or say goodbye. 

The paramedics finally arrived. They concluded he had to be transferred to the ER. They were sure it was something in his lungs and that he needed help. They struggled to move him down the staircase into the ambulance. They didn’t want to use their stretcher for some reason. So they moved him in his wheelchair. I saw my father being carried in his wheelchair helplessly dragged throughout the house. It was depressing. Ahmad and my uncle accompanied him. Later on, Ahmad said once they attached the oxygen tube, he started to calm down and breathe normally. He was exhausted. 

My sister, mom and I rode after them to the hospital. They apparently drew blood and x rayed his chest. The initial diagnosis was infection in the lungs. So they started IV fluids, painkillers and oral antibiotics. His oncologist was informed that night of his admission to the ER. ER rooms are tiny rooms that barely fit the patient’s bed and 2 people. There’s a single cramped chair on the side. Only one was supposed to accompany the patient, and sleepover. At 10:00 PM the guards would kick everyone out. So my mom stayed. We tried to convince her that one of us, the six offsprings, would take her place so she could rest. She refused. It was a constant offer that she said “no” to every single time. She said she would feel guilty and wouldn’t be able to sleep knowing she had left him all night long. 

Day 1 passed. Day 2 did too. It was already the weekend so we couldn’t dare ask for discharge! He really wanted to go home. He knew he was dying, and we kept telling him “not today”. The following week we were informed that he was on an IV antibiotics course that would take 7 days to complete. It was frustrating how the communication between us, the ER doctors, the nurses, the patient relations department and the oncology department was broken at all levels! It was sad how we had to ask for things repeatedly before we got them, how it took hours to get an answer. We understood they were busy with other patients, that we weren’t the only ones they were serving. But when you have a dying father, you’re selfish. You don’t see beyond the reach of your nose. You don’t want to realize that you’re not special! That your dad wasn’t special to these people. That the medical staff had many other “special” ones they were attending to. The frustration of having to tell my father that “no, not today” every time he asked to be discharged was hurtful. He got more depressed, he talked even less. He barely ate or drank anything. It was almost like force feeding him so that he kept what was left of his strength. He needed to eat to be discharged. 

Our arrangement of staying with my father was to have someone stationed at all times. That designated one reported everything on the WhatsApp group once it happened. Like all other cases in the world of a dying family member, tension happened, tiresome conversations, stressful arrangement had to take place. We had to remind one another it was normal to be the way we were, exhausted, and deeply sorrowful. I was assigned the morning shift. Mom was assigned the night shift. The rest of my sisters and brother were assigned intervals between 2PM to 9PM. My mother and I were the only two with no baby responsibility or work or school load. We all reported the same thing after each shift. It was daunting and tiring to see dad dying slowly. 

During the first week of his stay, my father was mostly conscious. Although I didn’t get to see him awake much. His days were nights and his nights were days. Apparently, that is a symptom in patients with liver failure. They don’t recognize time. He was always asking what time it was, or if it was time to pray. He would ask to pray many times. He would start a prayer and fall asleep right away. He would repeat his prayers and verses. We would help him lead the prayer. We would read the Quran for him constantly, or pray by his head, patting and massaging him. He would repeat whatever we pray. One time, he asked me to lead him through a prayer. I made sure he finished it, although it took triple the time. But 15 minutes later, he asked if he finished the prayer, and I repeated that yes he did, assuring him that I finished it with him saying “Don’t worry dad. Don’t worry”. He then said “I am worried about you”. My heart just sank! I said “Don’t be. Everything will be fine. I am fine. Don’t worry”. Then he dozed off to  unconsciousness. 

Towards the end of the second week, dad was in and out of a hepatic coma (the loss of brain function when a damaged liver doesn’t remove toxins from the blood). He was delusional and having many hallucinations. We had to witness my father desperate to go to the bathroom because he knew it was the only way he would rid himself of the toxins. He knew they were the reason he was hallucinating and paranoid. He would have attacks of paranoia. He would apologize after the attacks and say “They were the dream” It was hard on him that nurses, male or female, were changing him and turning him from side to side. He was so humiliated. I guess we can live with dignity but we can’t also ask to die with it. There’s no dignity in dying. I begged one day my family to just take him home, but my mom said “no”. He was on IV fluids and nutrition. He stopped eating and drinking water completely by this point. Plus, there was no force to help mom change my father. She physically couldn’t do it herself, and he would feel double humiliated if one of us, his offspring, did it. So the consensus was for him to stay in the hospital until he died. 

And he did.

On February 10, around 7:30 PM, my father  had an episode of hyperventilation. He started shaking and gasping for breath. It happened during Dina’s shift. I was already back at home, although before I left I felt that he wasn’t doing well, and that I shouldn’t have left. But to be in that room, room 69 was exhausting. Especially when everyday in the morning, I was the one who had to hear it from the doctors that there was nothing they could do. I answered their questions about how he was, and if there were any changes in his bowel movements, breathing, swelling body, sleeping pattern, his coma, and hallucination and pain. Change or no change, their answers never changed. They would always walk out saying we should be by his side, keep him comfortable and wait for God’s fate. 

Everybody was there. For the first time in two weeks, my aunts & uncles, mom and all my sister and brother were in one place. We took turns surrounding dad praying and crying quietly, watching him gasping clinging on every breath, watching his heartbeat and oxygen levels fluctuating on the monitor. The monitor beeps every two three seconds. I was begging him silently to just give up. It was torture for him and for us. He barely had energy to begin with. Mom desperately walked up to the nurse asking him for his opinion on how long it would take before he died. He had a sorry look on his face saying that dad was too weak. It was a long exhausting episode. It was 10 PM and we were asked by the hospital staff to leave, and only one person was allowed to stay with him. My mom stayed and everyone just fearfully left back home. 

The following days, my father was in excruciating pain all over his body. His breathing calmed but was getting shallower. His body looked as if he gained 10 kilos in two days! Fluids filled his body all over. He no longer went to the bathroom. He would have repeated episodes of cough and would be trying so hard to spit something out of his lungs. It would take forever. Dad was a dying battery. Its energy couldn’t function his body properly. He had a lung x-ray to see what was going on. The findings were “fluids are finally building up in his lungs and masses of metastasized cancer are seen all over”, I still remember vividly the doctor’s tone telling me that calmly. His body is finally giving up. Palliative care doctors bumped up his morphine dose to every two hours if needed. Their recommendation also was not to turn him from side to side anymore. He was dying faster than bedsores were forming. So our mission was to make him as comfortable and painless as possible. 

You know it’s the end when you discuss with your siblings the option to help your father die. The logic was if they couldn’t help him get better, then might as well help him worsen faster. I’ve never been for euthanasia, but now I understand why anyone would choose to end their suffering or the suffering of their loved ones. Many feelings rush through your head when you witness the prolonged death of a parent, anger among them is the worst. The frustration of being helpless rages inside you. But you still can’t do anything. So the plan was whenever dad makes the slightest noise to express ache, we ask for morphine. The following morning his palliative care doctor was wondering why dad was given 7 doses in one day. He actually had the audacity to say that it was not good for his kidneys and liver or lungs. This man was actually worried that my dad’s dead liver and almost dead lungs were to get worse? Now, how can you tell someone that that was the point! It was ironic. I didn’t know if I should laugh at his face or yell at him!

It was Tuesday, February 18, when I walked into room 69 and was ready for another day of anguish. I got the report from mom. She told me he never slept during the night. She said he was breathing shallowly the whole night. She said he called her and asked her to listen to him saying the Shahadah. She got ready to leave. But then she came back and told me that his shoulders, his collarbones and back were in pain, that I should massage him constantly along with his feet and arms. She showed me how to massage his back while he was lying on it. She told me his blood pressure reading was 77/37. 

My shift started at 9:30 AM. I started the massage routine. The silent was deafening. So I always turned the TV to the Makkah Channel, and listened to the Quran. I went by his head and prayed. Around 10:30 AM, his oncologist comes in with his team. The same routine questions were asked. I gave the responses my mom gave me. He looked at me and said “The next 24 to 48 hours are critical. Pray for him”. I reported that to my sisters and lied down on the semi chair / couch. Every couple of minutes I got up to massage dad. I was exhausted. It was 2:00 PM when I heard him whine quietly. I asked him if he wanted morphine, I got no comprehensive response. I called the nurse, and asked for the morphine, it was time anyway. The irony lied in the fact that I’ve always been away. I was never there for any of his cancer progression. I was the farthest, but now, I was the only one standing there pulling myself together with enormous steadiness. 

I stood by his left side. I repeated to him that it was okay, and held his hand waiting for the nurses to come back with the morphine. I raised my head up and glanced at the monitor, and I saw all the readings on it steadily going down. He was calm. He wasn’t shaking or struggling. His breathing was shallow, but he seemed calm. The nurses came back with the morphine. They looked at the monitor, they saw the readings were now flashing in red, and the monitor was beeping. They exchanged looks as if they were not sure about the morphine, but went ahead and shot it in. They brought a portable blood pressure meter, the reading was still at 77/37. The numbers on the monitor were still going down. I was still holding his hands and repeating the Shahadah. When I looked at him and he was not breathing anymore, I calmly walked out and informed the nurses in the station that I thought “It’s over”, my tears then started running down my face. At 2:25 PM the doctor confirmed my father’s death through his EKG readings. Everything that happened after that felt like “but a dream within a dream”.