“Life is for the living.
Death is for the dead
Let life be like music
Let death be left unsaid”
– Langston Hughes
4 Aug 2016 – 11.15pm
“Pak is very sick, he was gasping for breath. We have rushed him to the hospital now at AE CGH”.
I was calm despite the urgency of the text from my elder sister. I knew Pak’s health has not been really good for a couple of months now. Despite our persuasion to go to the doctor, he was adamant to stick to his “traditional remedies” which according to him was safer than taking the many “poisonous” modern medications that was prescribed by the doctors. Pak’s last hospitalisation was exactly a year ago, which honestly, gave us quite a scare.
I was really tired from a day’s work but I still made my way to the hospital quickly. When Pak gets ill, there had been episodes which got us really scared and worried. Hence, I would like to be around him whenever possible.
As I made my way to the hospital, I had some thoughts, particularly on death.
“Is this it?”
I am generally a positive person by nature, but I could not helped wondering how coincidental it was that my dad had to be hospitalized, just as I was planning to speak to him about his wishes, care plans and perhaps talk about death itself.
I recalled trying to have this conversation openly with my parents a couple of years ago as I have been more “exposed” with such dialogues among families I have worked with through my previous experience in a medical settings.
I was surprised that this wasn’t welcomed; I was brushed off by my elder siblings as being insensitive and morbid. In truth, I was also told to quit my job as they figured that I am turning into some depressive being. I resonated with the opening poem; I supposed my family (and possibly any other families), are more comfortable with celebrating life, while subjects of death (though inevitable) are best ignored or preferably left unsaid.
I was relieved to see Pak on a wheelchair. It was difficult for me to witness his inability to speak while clutching his chest and making desperate efforts for each gasping breath he took. “Pak… don’t worry, you are going to be okay,” I smiled as he looked at me. He was weak and pale – with a pain scale of 10 (being most pain). When the doctor confirmed that he had pneumonia and another heart attack, the confirmation acknowledged our greatest fear.
Though worried, my siblings, Ma and I tried to to ease the tension and waiting fatigue with occasional jokes, since endless hours of admission waiting does take toil on his physical state.
Pak’s life has not exactly been easy. He was the eldest among 7 siblings, all of whom he barely have much contact with at present.
Pak always shared with me that he had regretted many things in life, especially not focusing on his studies. Though Life had been tough for him, he rarely complained.
He seldom shares much about parents. They passed away before I was born, hence I had no memory of them. I was told that my grandfather was an alcoholic. The family was supported by my grandfather’s pension, while my grandmother died when Pak was in his early 20s. I was told that she was a home maker.
Pak was a primary school dropout because he did not enjoy school. He played truancy, got involved in gangs and does not remember any positive adult influence in his life. However, though he didn’t have any ambition then, fortunately, Pak is a very hardworking individual. He was unafraid of any laborious work. I remembered when I was a child, Pak’s hands were often covered in blisters – made rough from working on multiple blue collar jobs, such as security and gardener/ cleaner, so as to support the family. Later in life, Pak upgraded himself through skills training and gradually proceeded with a part time studies to upgrade his education. Ma supported him by taking on part time work to ease the family’s finances. I remember being so proud of Pak when he has gotten his Nitec certificate in 1997.
As I sat waiting at the A&E with Pak, Ma and three of my siblings, I felt a sudden surge of overwhelming sadness and gratitude as I examined my parents’ countenance: wrinkled faces, aching bodies and multiple medical problems.
I also caught sight of Ma’s anxiety and worried-stricken face, spelling concerns about her husband.
We kept Ma updated about Pak’s condition; Ma wants to know every crucial details about Pak’s health. We felt that knowing the information would also help her to deal with uncertainty. However, we wanted to probe more about what becomes important for them if time becomes short.
“Before he was rushed to the hospital, he had told me to hug him and he cried. He asked me to take care of myself if anything happened to him. He made me panic and scared”. Ma finally shared as we managed to convince her to sit and talk to us. I saw this as an opportunity to encourage her to gain insight into her feelings and circumstances. This is the beginning.
Truthfully, I was emotionally uncomfortable despite having prior professional training to facilitate difficult end-of life conversations. It only made me realized that it was personally very challenging to hold such conversation with my own family. I was choking with emotions, trying to manage my own fears of Pak’s mortality and my own anticipatory grief. I am afraid of the day when I will miss experiencing their unconditional love and the fear of not being able to turn to them whenever I needed it. I am afraid that someday, I have to face the reality of letting my parents go when the time comes.
The illness trajectory which my parents go through progressively (it is progressive to me because I witnessed how my parents’ health have declined over the years due to medical conditions other than natural aging) seemed like an intense journey. In our personal lives, some of our most meaningful communications often take place through a warm and trusting relationships. It is only with a safe relationship, we could then communicate our deepest anxieties and fears.
Then, I started my conversation.
6 Aug 2016
“I thought I was going to die, if I die, don‘t wait for everyone; I would like my burial to be done as quickly as possible. It doesn’t matter for as long as my wife and children are beside me. I don‘t want any surgery or whatsoever procedures that may cause pain. I do not want to go through much pain…
I am at a juncture in my life where my children are all grown up. I have worked hard; I have never slowed down and I do not know how to either. Now that I am old, it impedes my mobility, restrictions on my every movement including diet. You don‘t know, it is suffering to me. I want to be able to eat what i want, but I no longer could eat as much. I do not want to suffer nor live too long, because that will burdened my children from having to care of me.
I have some savings, it may not be much but it is for my children, my wife and grandchildren. I do not want all of you fighting for it. Remember, savings are very important.
Only thing I worry about, is your Ma. Take care of her like I did, I love her very much, because no one can stand me, like she did”
Pak has since been discharged home. The conversations that I had with him meant a lot because it would mean as a family, we will have mutual understanding, respect and honour of what Pak wanted for himself, knowing what were important to him when time becomes short.
Presently, Pak has been increasingly withdrawn and short tempered unconsciously. He also seemed to isolate himself, despite our encouragement for him to be involved in activities that he may enjoy.
However, we knew he welcomed and enjoyed our weekend visits deep inside, having his children and grandchildren around him…. spending TIME with us – the things that matters most to him.
And we hoped to make the most of it.
Profile: Personal reflection of Nasim (social worker) on having difficult end-of-life conversation and her meaningful insights gained from the process.