Tell me about the moment your father died.

Friends get each other talking

 I’m trying to remember how it came about. Some of my friends who have been friends for four decades, that is, since elementary school, but living in different parts of the world now, have come up with a routine. We talk by WhatsApp video chat every now and then. Last week, as we were talking freely, no judgments, only comfort and love, pulling each other’s legs as soon as an opportunity arose. All of a sudden one of us started talking about the moment that his father had died. Maybe it was the comfort level of talking to people who were closer to him in many ways more than his own family that he started sharing his innermost feelings with us.

 I heard his story and thought for a moment how it must have been for him to go through his circumstances at the moment of his father’s death. I wanted to say something in return to make him feel better. I wanted to comfort him, console him, and tell him that I was there for him. But I could not come up with a good way of expressing my support. Anything I would say would sound so superficial and artificial. How could I convey my feelings to him in a way that he understood my desire to comfort him? My mind went blank. But then it came to me. I would share with him the story of the moment my father died. That would be the best way to express my true emotion towards him.

It’s hard to talk about your parent’s death

Some people who are reading this will be fortunate in that their parents may still be alive. May God give them longevity brimming with good health. You are the people who live with the fear of seeing a day when your parent will die. I tell you, it’s not a good day. But it will pass, like all other things in life. But those of us who have lost a Dad or a Mom or a Baba or Amma or Abu or Ami; you would not disagree with me if I say that it was probably one of the worst days of your life. We often push our worst feelings and memories towards the rear of our minds. Shove them somewhere, where you hope to not see them again but know that they will keep coming back because there is no way of getting rid of them.

But one way of making these feelings more tolerable is to keep invoking them again and again. Do you know that if you are allergic to something, the doctors repeatedly expose you to the same stimulus to “sensitize” your body so that you can be exposed to it and not get the allergic reaction anymore? Similarly, if you recall your ugly memories often, they don’t remain that ugly anymore. And on top of that, if you start expressing those feelings, it ends up being cathartic. I learned the meaning of the word “cathartic” after a very long time. It’s a release. It’s closure. It is therapy. If you keep your feelings and emotions inside, they pent up and start creating pressure in your head just like a pot of water when it is being boiled. As soon as you express those feelings, and put them into words, either by saying or writing, you release that pressure inside your head. It is liberating.

In the same way, I would ask you to recall the moment that your parent died. Do not put that memory on the back burner. Express it and notice that memory turning from a bitter memory into a sweet memory. It will become sweet because you shared with your loved ones and now you are not the only one to bear the burden of that memory. You have shared the weight with others and it has become easier to carry the memory.

The subtlety of the signs of the onset of dementia

When I think about my father, the very first word that comes to my mind is: “nice guy.” It’s funny to think of your father as that but that’s really who he was. Easy going, lenient, understanding, always trying to make a lame joke. Proud of the fact that he worked hard and was a simple, uncomplicated, and self-made man. His cognitive decline came at a time when he was at the pinnacle of his intellectual accomplishments. He was the Dean of the Post Graduate Medical Institute at that time. That can be considered as the highest level of academic medicine to achieve in this profession. The onset of dementia is usually not abrupt and can be slow. It seeps into your personality gradually so as not to be able to remember a specific moment of onset. But when you look back, you realize that some events were the beginnings of the shortcomings of mental capacities.

He always raised us very tight with money. My brothers and I often joke that he gives us enough money to fulfill our needs but we never had enough to party or be extravagant or wasteful. We figured that something was wrong when he started giving us the amount of money we asked him for. We did not know at that time that he had started losing the capability of doing the math when dealing with money but we could not understand at that time. We were just happy that he was giving us the money. He started making mistakes while tipping. Giving a much higher or a lower amount compared to the 20% that he meticulously taught us to calculate in our heads while we were growing up. My mother recalls that while he was traveling with her during Hajj, he was a different man. She still cannot put a finger on how he was different but being someone who lived with that man for the last three decades and knowing him inside and out, she could feel the difference. Something had happened. His routine had changed. His thought process was different. But she did not yet know what misery this change was a sign for, that he and the whole family would have to endure for the next decade or so.

It is not uncommon to see elderly people in their eighties or nineties be moderately demented. In fact, it is considered normal by many to “lose it” with age. But developing signs of dementia in one’s sixties and then progressing on to end-stage within a few years is uncommon and particularly devastating. My father’s cognitive decline proceeded with a snail’s pace but what appeared to us as lightning speed. Every year was worse than the prior. We did not even know what was going on for the first few years. We knew something was different but we could not tell that this was something pathological. The signs started becoming clearer, unfortunately. We all used to wait for him to come home to have dinner. I don’t remember a single day of my childhood where we may have proceeded with having dinner without waiting for his arrival back from work. One day he came home much later than his usual time. This was not the time of cell phones. You would not go crazy with frantic phone calls and texts if somebody was a few minutes late. You would wait. When he finally arrived home, he had a confused and slightly embarrassed look on his face. When my mother asked him the reason for being late, he told her that for some reason he could not find his way back home and he was roaming around in the neighborhood for a while. Again, we did not think much of it at that time.

A few years later, I had moved to the United States and my parents visited us when we were expecting the birth of my daughter, their first grandchild and the only girl in two generations. We are all brothers and we do not have a sister so the birth of a girl had an extra significance and excitement. My father used to take care of all travel-related tasks such as keeping the tickets and passports safe in his coat pocket, checking in at the airline counter and carrying the boarding passes, and figuring out which carousel the baggage will arrive at. Now he had lost his sharpness and my mother had to gradually start taking over these tasks. My mother knew something was not right but she could not put a finger on it.

Son breaking the diagnosis of dementia to dad, both physicians:

 I had started my medical training and had started seeing patients with dementia. I was having a conversation with my dad one day about our mutual profession of medicine. Here he was, a seasoned pediatrician and I was a budding internist, a dad and son having an exchange about our beloved profession. I would often ask him questions to which he would give me guidance and practical answers. All of a sudden it popped into my mind to ask him whether the change in his behavior that my mother was noticing could be the beginnings of a diagnosis of dementia? He did not have a response to that. I could sense the genuine expression of not knowing the answer on his face. I am still not sure if it was because he did not know the clinical presentation of dementia (because he, although was an experienced clinician but was a pediatrician and this is a disease of the elderly) or whether it was because he did not have insight into his illness just as most patients with dementia don’t.

I took him to a local neuropsychiatrist and also discussed his case with the Professor who I was working with those days. I still remember that after listening to me go on about his symptoms for a while, his only answer in the end to me was, “I’m sorry to hear that about your father Farhan.” I was expecting him to offer some advice, some tests, and treatments but he did not offer any. The finality of his statement struck me. Not only had he confirmed the diagnosis but had also indicated to me that there weren’t any effective treatments available. My eyes welled up but could not prepare me enough for the treacherous journey that lay ahead.

I can still remember the day when my mother and I were sitting in the waiting room in the doctor’s office. He had taken my father into the room by himself to ask him questions which he was supposed to answer without our help. Earlier we had witnessed the man who had the largest clinical practice in town, mentally reduced to being unable to copy a simple picture of a house that preschoolers usually draw easily. We grew up with his stories of how he was proud that he always score a hundred in his maths exam and was now unable to subtract sevens serially out of a hundred. I started lecturing my mother how she now had to take over the finances and all other such dealings of the family.

His love for his time in America:

He had trained in the United States and was amongst the few people who relocate back to their country. He had the most fulfilling career in Pakistan with tremendous achievements both academically and financially. He could probably never have achieved this kind of success if he had stayed back in the United States. But his heart always spoke about America with love and fondness. He was asked by his brother and father-in-law to stay in Pakistan which he did, but in his wishful moments, he would always reminisce his time in America. When I told him that I had decided to pursue medical education in the United States, he seemed genuinely happy for me. When I was applying for residency positions and was wondering which hospitals to apply to, he used to say, “every hospital in America is the best hospital in the world.”

When he was in the United States, he had the opportunity to become a citizen but at that time, acquiring US citizenship was not such a big deal. For him, it was a matter of just filling out a form and putting it into the mail but he decided not to, primarily because it would have been one more form to fill. Later the world events changed in a way that even obtaining a visa to visit the country become quite difficult, let alone obtaining citizenship. When I got my Green Card (permanent residence), I was on my way to work and called up my father. He had lost his capacity to understand the meaning of naturalization but somewhere buried in his mind was to congratulate me. “I’m proud of you” was what he said. Perhaps he figured that whatever I had achieved in the medical profession, he had already achieved it but since I also obtained the citizenship of his beloved country, I had done something that he did not do and hence was proud of me.

Another time he was visiting me, he had started to become more childlike. In the morning I would fill a bowl of cheerios with fresh cold milk that he would love to have. He loved fresh milk to drink taken directly from the fridge and without adding anything into it. In fact, that is what he would bring us to drink the first thing in the morning when he used to wake us up for school. He would enjoy his cheerios like a school child. In the evening, I would put a chair in our driveway and he would just sit there and stare at the front yard and the passing cars and say nothing. When you said something to him, instead of being able to come up with meaningful responses, he would just smile and if he saw you laughing, he would laugh with you. He was happily demented. His recollection of America was that of the busy life of New York City where he had spent most of his time in his youth. Now he was visiting my place that was a ranch house in suburban America and was nothing like New York City. He was pleasantly confused about that and would often say, “Is this the same America? Is there another America as well?”

When the dementia is not so subtle anymore

I did not live with him for the last several years of his life. He was in Pakistan and I was in the United States. My mother and younger brothers lived with him through his entire journey from the diagnosis of dementia until his death. They have a thousand more stories to tell than I do. But I do remember every few months, hearing a new story of something embarrassing happening in front of other people that my mother would tell me about. He could not recognize her anymore. He behaved as if she was some “lady” living in the house. He also stopped recognizing my brothers. He would behave very formally with them like you do when a distant acquaintance is visiting you after a long time.

He could not work anymore. Patients would still come to him because of his fame as a pediatrician but he did not have the capability of practicing medicine anymore. If these capacities were lost relatively quickly, it would have been easier for him to stop working but the cognitive decline was so slow and subtle that it became difficult to decide when to ask him to stop working. His colleagues would “cover up” for his decline by having other doctors make clinical decisions in case he was not making the right decisions but his practice managers still would not let him stop working because his name was selling. I had a deep conflict with that practice but I was thousands of miles away and could not put an end to that practice because I was told that I lived in a different world and that they had their own way of handling things. Eventually, he was not even able to put up a show of being a physician in front of the patients and his practice was taken over by his junior colleagues.

Phone call from mom, “It’s time to come home”

One day I received a call from my mom. I was moonlighting in a smaller hospital close to West Virginia. I had just begun my fellowship in Oncology at Georgetown University. It was not unusual for my mom to call me and tell me how my father was doing and to obtain medical advice. This time her tone was different. She had seen or experienced something that had invoked the sense in her that he did not have too much time left to live. She said, “Come home. Your father is not doing well. I have also asked Salman (my older brother who was also overseas) to just come.”

When you live so far away from home, every phone call about an ailing family member becomes a source of anxiety. It becomes hard to decide when to pack up your bags, leave your life as is ongoing, and head back home. If there is one tragic event, the decision of whether to go or not becomes easy but if somebody is suffering from a chronic illness, with periodic exacerbations, it is hard to decide when to go. This time it was not hard to figure out though because of the clarity in my mother’s voice.

 I walked in the very next day into my boss’s office and told him the situation. Fortunately, I work in a profession where we are helping people in similar situations on a daily basis. I started explaining my father’s situation to him but the great man that he was, stopped me mid-sentence and said, “Your dad is dying? Go. Go home.” I again started to ask him about who would cover for me and some other logistics of my vacation but he did not let me finish what I wanted to say and asked me to just go and tend to my family. He would take care of how to handle the workload of my absence. Needless to say that I will remain forever grateful to that man.

The dying days

When I reached Peshawar, instead of going home from the airport, I headed directly to the hospital. My dad was surrounded by family and friends. I started looking at his medical chart and examined him and realized that there was nothing acute going on. It was rather a situation where nobody at home was equipped to deal with his worsening chronic medical issues. I conferred with my brothers and we brought him home. Hospice care is non-existent in Pakistan so we had to handle everything on our own. We hired a nurse who had absolutely no medical training but was supposed to be with my father at all times and help him with all activities of daily living ranging from feeding him to helping him use the bathroom.

He had a lot of secretions in his throat on which he would start choking. We brought a suction machine for which we would take turns to suck the secretions out of his throat. This would irritate his throat to the point that blood would start coming out. This is also when I realized how difficult it is to be a doctor or a nurse for your own family member. Too much love or hate can impair your medical judgment. There were times that while suctioning him, if he started screaming in pain or started choking, I would have to stop because I would start crying myself. This is also where I realized the importance of professionals taking care of people who are towards the end of their life.

I was in close touch with the Palliative care professors at Georgetown via email. I would ask questions about how to handle any of the situations at the bedside in my father’s final days. Finding well-trained palliative care doctors and hospice nurses is impossible in Peshawar. We knew everybody in the medical community since we belonged to it but the medical expertise of how to take care of a person at the end of his life was simply not available. We had to do everything on our own. By this time, I had good training in these issues but it was hard for me to apply my medical knowledge to my own father’s care.

You cannot be your own dad’s doctor

When his secretions became too much, choking him every few hours, I asked the nurse to cut down on the liquid feeds that we were giving him through the tube that went directly into his stomach. When my mother found it, she went lividly angry at me, “keep your training to yourself, I will not let you starve your father to death.” When my father was in intense pain, which became apparent by how hard he was clenching his teeth and tightening his fists, I tried to acquire strong pain medications for him which could be given to him intravenously since he was not able to swallow pills. I called one of his students who himself was a Professor of Pediatrics, having no experience in adult end-of-life care, and asked him where I could find intravenous morphine. The response came, “he is also like a father to me, how can you even think about euthanizing him?” I realized that my expert medical training would not come to much use because of the complex cultural issues at hand.

The family wedding predicament

In the days when my father was totally incapacitated, we as a family had to make another big decision. My younger brother was supposed to get married. The invitation cards had been sent out a few weeks prior. The venue was booked. All the food catering orders were finalized. It was supposed to be a big wedding with a large number of guests like many Pakistani weddings are. As the date approached near, we became increasingly uneasy about whether we should go ahead with the wedding as planned or not. Weddings are supposed to be happy events with joy and dancing and laughter and here we were, sad and our hearts crying every day looking at the state our father was in. How could we be hosting people with smiles on our faces when our father was suffering from pain and agony. There was talk about postponing the wedding. There were concerns brought up that it wouldn’t look appropriate that our father is dying and we are out there having a good time.

This is where my experience of working with my own patients’ families helped. We are often asked by families about personal issues like when to travel or when to hold certain family events if a patient is dying. I suggested that we go ahead with the wedding because if we didn’t, it would feel as if we are waiting for our father to die so that we could move on with our lives. Also, we did not know how long he had left. In Pakistani culture, the girl’s family would not want to wait that long. Finally, we decided to move forward with the wedding. I can still remember, telling my dad’s nurse on the evening of the wedding, on my way to the wedding hall, to call only me or another brother in case my dad died while we were at the event. We had a plan to keep it to ourselves and not let anyone know because we did not want a wedding ceremony to convert into a funeral. We would keep it hush until the next morning or so and then move on with the burial. God was kind to us and the wedding went on smoothly, without any hiccups.

When he was dying and I had to leave

Being an immigrant to another country is not easy. One of the problems is that you are living so far away that it is not always possible to be at important family events such as the death of your own father. I had taken a few weeks off to be at my father’s bedside. My colleagues were very understanding of my situation especially when this is exactly the work we all do for a living, helping people and their families towards the end of their lives. I had not been asked to come back to work at any particular time. But after spending about four weeks, I felt the burden of duty and decided to go back to work. I would not take advantage of their niceness by staying away from work for an extended period of time. I could have easily taken another couple of weeks off but we did not know how much longer my father had to live. It could be two weeks or two months. That is when I decided to fly back to the United States and go back to work.

As I saw my father for the last time and I turned around to leave, I had full realization that this was the last time I was seeing him alive. The man that he was, was gone several years ago, his cognition and his personality robbed by dementia, but the physical body was also on its way out of this world. My mother was standing there and I burst into crying with the intensity of a child. I’m used to giving advice, even to my parents in any situation and while I was sobbing, I remember telling my mom to bury my dad in our ancestral graveyard in Charsadda which my dad always spoke about because that’s where his dad was buried.

I flew back to Washington DC and resumed my job. My wife and kids were still in Pakistan. I was alone. About a week later, one evening, I got a call from my brother who was a medical student at that time telling me that my father’s blood pressure was quite low. They were smelling a very foul odor from his secretions and it looked like a bad pneumonia was setting in, making him go into sepsis which is how an infection takes your life. It was an indication that he did not have much time left. We agreed that we would just keep him comfortable and not take him to the hospital. I went to sleep.

The moment of his death

I woke up with a phone call from Pakistan. It has been fully erased from my memory who called me, probably because of the shocking nature of the moment, but I was told that my father had died. I was expecting a phone call like this for several months now which I thought would have prepared me for the moment when I will hear of his passing. Apparently, I wasn’t. This was the moment that is the most dreaded moment of anybody’s entire life. The moment you hear or you see your father dying. I ended the conversation abruptly and hung up. The moment I hung up, sitting up in my bed, a deep wail came from inside of my stomach and I burst out into a loud cry. I wept with such intensity that I did not think I was capable of. My clothes and the bedsheets were wet with my tears. There was nobody there to console me. But I did not want anyone there anyway. I sat still for a few minutes. Then I got up, got ready, and went to work. I did not tell anyone at work that my father had died that morning. I did not want people to come and offer me their condolences because that would make me emotional. They would ask me to go home and take the day off. “Who works on the day their father dies,” they would say. But what would I do if I went home? There was nobody at home. I may not have been able to handle the loneliness. I was better off surrounded by people who did not know what was going on. Work was the best distraction under those circumstances.

I keep saying that being an immigrant is not easy. If you hear about a loved one’s death, even if you catch the very next plane to be able to attend the funeral, it might take a good two to three days, between the long travel and the time zone difference, for you to reach there. In the Islamic tradition, embalming the body and keeping it in the morgue for prolonged periods of time are discouraged. The burial should take place promptly, the sooner the better. I had just returned after spending a month with my father and even if I decided to go back to attend the funeral, I simply could not make it. This way, like millions of other immigrants, I could not go through the experience of burying my father.

The profound act of burial

There is a certain feeling of closure that is associated with spending time with the dead body of your loved one. When you see them lifeless, not breathing, body as still as an inanimate object; the reality of this existence strikes you. You mourn until you tire out. If you think of it, you are a biological product of that person and when you perform the final rites such as washing the body and covering it in drapes, preparing for the burial, it is as if you are laying to rest a part of your own body, your own existence. As you lower the body into the ground and cover it with earth, your mind goes into a state of void and emptiness where there is no room for any worldly thoughts. When you finally walk away from the grave, issues of life start seeping back into your mind. For a while, you push those thoughts away but slowly, they keep coming back to the forefront, eventually helping you overcome the great loss. If you are unable to participate in the burial of your loved one, you are deprived of going through all these emotions.

The other most common way in which humans bid farewell to the bodies of their loved ones is cremation. I have never participated in a cremation ceremony so I cannot attest to the emotions that one goes through while this is happening. But I have heard about the sentimental value that is attached to the ashes and how these are handled by different people and cultures. Humans have developed different ways of doing things and it is not uncommon for people to frown upon and criticize other groups’ practices and rituals. For example, I have often heard people speak with disgust about some cultures that place the corpses on tall towers to be eaten by vultures. At one point I also thought of this as a barbaric practice but then somewhere I read that the philosophy behind this practice is that those cultures want to be beneficial to mother Earth even in their death. The vultures that eat the corpses are also God’s creation and those humans, even in their death are providing sustenance to the birds. If you think of it this way, you can appreciate rather than abhor this practice.

After death, our parents live through us

It has been about a decade since my father died. But I feel that he has been gone for two decades because his cognition started waning long before his physical body left us. Life moves on. Bearing the loss of his death becomes easy by remembering his own words. Anytime a tragic event would happen in our lives, he would just say, “this is a part of life.” I don’t feel sad when I think about him. I always feel happy. I never wished that he had lived longer. I feel that this was his destiny. How can I challenge destiny? Who am I to challenge God.

I still see him in my dreams every few months. I have dreamt that we are sitting together and his cognition is back. I’m telling him about how he lost all his mental capabilities and how difficult it was to handle everything. He listens and sympathizes and for a moment, in the dream, while sitting with him, I feel that his protracted illness and dementia was nothing but a bad dream, but then I wake up realizing that every single bit of it was a raw truth. I feel that he lives through me. Through my brothers. Often when a brother speaks or makes a certain gesture, it is just like my dad’s. Some of my own habits, simple things like how I touch the side of my teeth with my tongue, how I cross my legs while relaxing, how I like to wear my cozy robe and socks at home, my thin shoulders and awkwardly protruding belly; are all reminders that he is still living through me.

With the advent of cellphone cameras, we now take a generous amount of pictures even of the littlest things in life. There was a time when you had a film in the camera that would take only thirty-two pictures and you had to think so many times before taking a picture. Now you see commonly that pictures of deceased people are circulated on social media. Some religions and cultures frown upon it but it still does not stop people from taking these pictures and sharing them. Social media has seeped into our existence like water through a crack. Since I could not be at my father’s funeral, my mom asked me if I wanted her to send a picture of his face after passing away since that is probably what others had started doing. Maybe some people even participate in funerals and burials by FaceTime. I shuddered at this thought. I immediately refused. I don’t know what made me decline this offer instantly without even putting any thought into it. This was my chance to participate in the last rites of my dad and could provide me some closure. But now that I think of it, I simply did not have the guts to see him like that.

When  I visited Pakistan, I went to his grave. It was a nice way to pay respect but just looking at a tombstone with his name and scripture inscribed on it, did not do too much to stir emotions. It is also possible that I remained relatively unemotional at that time because I was used to grieving alone, by myself. Perhaps I was surrounded by people who accompanied me to the cemetery and I was victim to the ultimate curse of human thinking called, “what will people say.” I was not letting my emotions be expressed freely and was inadvertently suppressing them. I would still say that visiting a loved one’s grave has its special significance but the true way of remembering someone is by talking about them. Often when I’m talking to my children, I interject my father’s words into conversations. Of course, it is not pleasant to talk about the dying moments of your parent but it is important to recall these details every once in a while and to put them into words. This is what brings you closer to the people with who you are sharing the memory of these moments. I encourage you to remember the moments you experienced when your father died and share them with someone. If your father is alive, may he live a long, happy and healthy life. Amen. 

December 18, 2021

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