My dad passed away at home on 3rd February, Friday, 2023 very early in the morning somewhere around 0630.
The sky decided to stop its continuous rain on that Friday morning.
In July last year, he thought that he has exercised too vigorously again and hurt his leg. The normal remedy for that is more rest. Two weeks later, he found that part of his scrotum/testicle area to be very swollen still.
He thinks it was time to stop acting tough and told his son about it.
I brought him to a nearby GP to check out. The GP thought that he was suffering from a hernia. A hernia is when parts of the internal organ push through a weak spot in your muscle, and it is a common problem in older men. The solution might be a minor surgery which will allow him to still live a decent life.
He was scheduled to have an appointment at a polyclinic and we decided he is strong enough to go on his own. The doctor at the polyclinic examined and think this is not a herniated problem and decide to ask him to go to the hospital to check it out.
We were supposed to know the result of the check in a scheduled appointment two weeks later. But on a Sunday, six days before the appointment, we received a phone call from the nearby hospital that we should seriously consider making an appointment at Singapore General Hospital as it is cancerous.
Long story short, external cancerous lesions were found in his rectum and anus. The doctors determine that this is “early” stage four cancer.
The natural treatment is chemotherapy.
He was recommended to do it but my dad has reservations. You and I must have heard of enough people who underwent chemotherapy but still passed away. Eventually, we talked to him to be more open-minded about it. When it comes time for him to make the decision, he asked what do I think.
My now-deceased mom’s experience registered in my mind. I think if chemo will work well for him, I don’t want to regret we didn’t try. So in my mind, I told him we should try, at least a few cycles.
He went through three cycles of chemo.
Each cycle last three weeks with one week having an intravenous injection, another week of oral chemo drug and the last week of system clearing. After three cycles, there would usually be a deeper scan to assess the effectiveness of the treatment.
Chemo did nothing to slow down cancer.
The doctor recommended strong chemo medicine. But before that could happen, Dad had a small fall.
In the past, he had periods where he would be suddenly weak, and in this episode, although I supported him while he was in the bathroom, he still fell and hit the back of his head. We called 995 and he was admitted to the hospital. Externally, my dad was okay as there is just a small bump on the head.
The doctors decided to scan his head.
The scan showed that there were cancer cells in the brain, and in the liver.
If you peek in my head, the spectrum of outcome fans suddenly narrowed to a small range.
The brain controls areas of the body that can affect the quality of life. It is not that chemo doesn’t have an effect on the rectum or anus area. There is always a worry that chemo might affect the external tumour such that my dad cannot shit anymore. It will require surgery to adjust and use a shit bag.
I am not sure whether to be thankful or not, but the cancer tumour in the rectum and anus was not aggravated so we need something like that.
Dad was recommended to go through electric radiation therapy to control cancer in the brain. He will have to do a 2-5 minute radiation in the head for ten working days straight.
This irritated him because it meant we have to go so far to SGH every day for two weeks.
Thankfully, his caregiver Mar Re came.
I decided to hire Mar Re to take better care of him. I assessed the probability of outcome and most of the paths of the decision tree tell me hiring a caregiver is the right decision.
Mar Re spent 8 years working in Singapore as a maid before returning to Myanmar to have a family. Ten years later, she came back to a slightly different Singapore as a medical caregiver and I ended up as her first employer back.
Hiring Mar Re was one of the best decisions I made in the last forty-two years. I can write a blog post just on Mar Re. During much of the wake, a big portion of the discussion eventually went to caregiving help. Perhaps more are interested in that topic (let me know).
With Mar Re, I have someone to help my dad around and follow him to the hospital visits. Her presence definitely gave my brother and me more breathing space.
The doctor explains that near the end of the radiation therapy, it is normal to feel weaker.
Dad felt that his left arm was weird and told the doctor and he decided to scan the brain.
Under radiation, the cancer cells show that they were reacting. But there were still more cancer cells appearing.
By this stage, basically, nothing worked.
This hit my dad hard.
When he was first diagnosed, he would tell us that he had lived a long enough life and he was not afraid of dying. There were enough episodes that tell me what you tell people and what you are feeling is totally different.
I can imagine how hard of a punch those results must have felt but will never understand how he felt when they hit him.
We decided to adopt palliative care. This was around mid-December.
By then Dad has become much weaker. To be honest, chemo didn’t weaken him much. As I reflect back, I wonder if most of the damage was done by the natural progression of cancer or radiation therapy. After the chemo sessions, Dad would still wander downstairs to walk his few rounds.
But by mid-December, he was weaker.
He has taught Mar Re how to cook most of the stuff we normally eat. Dad spent most of the days in bed. Mar Re did the cooking and the housework. I would help out where I can but most of the time, I realize Mar Re took care of everything.
Dad was able to go to the toilet. Until that became too tiring. So he remained in bed.
Mar Re changed his adult diapers frequently.
Just like a baby, we realize that one pack per month wasn’t enough.
We settled upon a routine where Mar Re did most of the things at home and I became the logistics man running around buying and shoring up supplies.
Dad started having a tendency to eat a lot of random food he likes. Because he cannot move, Mar Re will buy for him or cook for him. If not Mar Re will tell me, and then I will try my best to get it.
When we decide to adopt palliative care treatment, SGH forwarded our case to HCA Hospice. HCA Hospice would make home visits to check on my father’s condition and teach us how to better care for him. If there is a need for better equipment, they would tell us. The doctor would tell us to get certain medicine from the pharmacy in anticipation of… tougher times.
The information provided by HCA helped me better assess the situation.
I can still remember one of the visits. I was not around and was at work. The lady who came down asked whether we can arrange for a session next week to brief me on the end-of-life medicine to be administered (if need to). Usually, they briefed the family members instead of the caregiver.
But the next day, I received messages from the lady asking if they can go to my home and teach my caregiver how to administer the medicine.
That shifted the mental Gantt Chart from further out to much closer.
Why were they so concerned?
I would like to think they have seen enough of these cases to know the signs that the end of life might be sooner than what we had in mind.
In that 1.5 months, I basically see how a person dies slowly in front of me.
Maybe due to the brain cancer, dad struggles to describe to us what he wanted. You can see visible frustrations on his face when we don’t get what he wants. That probably frustrated Mar Re and me as well.
We need to ask him to nod or shake his head if we guessed correctly.
But soon the demands stopped.
He struggles to take in water via a straw. Mar Re started improvising.
First, it was using the spoon to feed him directly. Eventually, it was using cotton wool to drip water into his mouth.
Strangely, although he struggles with drinking, he could take in food better.
But eventually, both stopped.
One of the things I had to deal with was… when will it end?
In my mind, the spectrum of outcomes has narrowed to one outcome by now (barring some divine miracle). Thinking back, I fell into the trap of discussing with Mar Re whether he is eating or drinking that day, and what it show. In front of him.
Reflecting on that, while we spoke in English, which he does not understand that well, does he not understand what we were discussing?
Probably enough. Sometimes I hate that part of my brain where I needed to see certainty in the mental Gantt Chart.
When a person eats and drinks less, you start seeing him or her really lose mass. Excess skin from rapid weight loss starts to show. The head will eventually take the shape of the skull as the meat went away.
He eventually stop eating and Mar Re began counting the number of days he hasn’t eaten. Without food and water, man cannot survive. The question is how long.
I probably wrote enough about financial independence.
The literature would tell you that with FI, you can just drop everything and quit your job to be with your loved one. Everyone tells you to don’t think about work so much and just be with your loved one.
They care for you but I wonder if they understood what every caregiver needs. Sometimes, seeing that deterioration can really fxxk you up enough that you need the break away from seeing them once in a while.
I was the point person for something we are about to deliver soon. I cannot stop my brain from trying to juggle the timeline of the two projects (one a work one and another personal one).
Not knowing the exact end is a project management uncertainty.
I asked HCA Hospice for more hints. They say it will be days to weeks. That fxxking doesn’t help.
By my closest estimation, what I think is likely to happen is that at the launch date, Dad will pass away, and it will be impossible for me to double hat that wakes and the rollout well. So the only solution is to work like a madman to iron out any project uncertainty so that anytime he passes, the rollout won’t be affected.
To the people outside, especially at work, I must look even weirder because why am I choosing to work instead of spending time with Dad? I think it would be great if we know how long someone has. That is not usually the case. Some of my colleagues thought that my dad is still undergoing chemo. If you choose to tell people less, then they would know less and they would look at things more weirdly.
I stopped celebrating stuff.
I tried to escape any company celebration that I could because… celebration just feels weird when your dad is not well.
I tried to choose who I meet well. If I have met up with you the last six months, it basically means I give-a-fxxk about you or your situation enough.
The day before he passed away, I got desperate enough to ask ChatGPT to see if ChatGPT is that good to give me an answer.
ChatGPT gave me a lot of roundabout answers but eventually roll frequently that it is around 4-5 days.
Dad passed away after being without food and little water for 5 days. He passed away the morning which would have been the sixth day.
From diagnosis till the end, it was just six short months.
We tried asking whether Dad wants a three or five-day funeral before.
I can tell you, trying to make that out when he is not coherent was tough. Answering that question… is also an admittance that the end is near.
Our elder cousin questioned why we had the guts to ask that question. He won’t dare to ask.
My brother managed to get out that he prefers a three-day funeral.
Passing away at 0630 made planning smoother.
The timeline to run a three-day funeral is damn tight but starting early in the day made everything smooth.
It helped immensely that we contacted the funeral services company about two days before he passed. My brother and I also had the experience of project managing our mom’s funeral five years earlier. HCA Hospice also provided advice on what we should do if he passed away.
Everything went pretty smoothly.
The three-day funeral services will likely cost us $13,000-$14,000.
As a comparison, a five-day funeral cost us roughly $11,000 five years ago (from the same company). Today, it will cost us $15,500 at least. That is roughly a 7% a year inflation.
Hosting a funeral during Lunar Chinese New Year is a weird thing.
Even without that, you would struggle to figure out how you inform people. Who do you inform? Who do you don’t want to inform? I decide to put up just a Facebook post and tell my secondary school friends, and colleagues. Along the way, you always felt that you forgot to tell someone. You deliberate whether tell your readers.
My aunt pre-empts us that we might not get a good turnout because one, three days is a rush, and two it is still within Chinese New Year.
I do not know what is so bad about it but likely if you go to a funeral, you increase the probability of bad luck for the whole year.
Those of my brother, sister-in-law and my friends who came down basically say fxxk-you-to-365-days-good-luck and came down to support us.
You inform your friends early when you prepare for your Wedding banquet. Funerals are usually last-minute stuff. People re-arrange their life to attend to them.
I always remember (I hope I am right!) who came down for my mom’s funeral. I am deeply grateful for those who came down for my Dad’s. For those who didn’t come down, don’t worry I understand each of you has your own unique circumstances. It is the thought that counts.
Now comes the phase of adjustment.
My dad used to tell me off every time I don’t wash or leave something around the house. He will say: “When I am not around anymore, how can you take care of yourself? Every time depend on me to clean up for you!”
Well, now we will find out if I can take care of myself.
A five-room flat will feel quite quiet now.
I may probably have a few tales to share. After caregiving to two cancer patients, I probably have some really warped views about protection, especially health insurance and critical illness.
Let’s see if I remember to write them.
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