Around US Thanksgiving, my mom let me know that my dad had been diagnosed with stage 4 colon cancer with a life expectancy of 1-2 years. In mid December my dad was hospitalized and one of the doctors suggested all family members should come urgently. When I arrived, the days consisted of going back and forth to the hospital and I commandeered a corner of the cafeteria as my remote office.
I think we all have different ways of dealing with stress, and my routine was prayer, hitting the gym, and doing yoga at night like clockwork. The first days were overwhelming with uncertainty, but this routine helped me to stay focused on things on the support tasks that needed to be done for the day.
Towards the end of the hospital stay, the doctors stated that there wasn’t much they could do, revising his life expectancy of weeks to months and suggested the best course of action was to be on hospice care.
My mom and I had a meeting with the hospice staff, who explained what hospice care entails. Compared to regular medical care which is to save a life, hospice care aims to provide comfort care to prepare for a patient’s end of life within a couple months. Since my dad had been diagnosed with a terminal condition of less than 6 months, he was eligible for the care via insurance.
As I’m sure no one is surprised, my dad hated being in the hospital. The hardest thing to see was him exclaiming in English and Vietnamese that, “Ba muốn đi về (I want to go home)” There were some serious medical complications preventing him from coming home, but fortunately, one of the doctors managed to do a treatment plan that enabled him to improve just enough to leave the hospital. One of his last prayers and wishes was to be at home. Thankfully, throughout the ordeal he didn’t have any pain in the hospital.
When he was discharged, we got him set-up at home successfully with a patient bed, and oxygen machine provided by hospice care. However, it was then we realized the magnitude of care needed. Now we would need to take care of my dad 24/7 as the cancer had robbed my dad of his independence. By a fortunate turn of events, God in his good graces lined up a caretaker who was a contact at my mom’s old home church to help watch him at night. Without that caregiver, everyone would have been exhausted to the point of feeling like zombies.
All kinds of questions began to arise, requiring us to adapt quickly. How would he communicate? How would we monitor him? One of the most low tech, but successful things we got was one of those bells that you ding when your order is ready at the diner. Another was a baby monitor where we could see him when we weren’t in the room.
The first couple days were okay, where the new sounds of the house consisted of the whir of an oxygen machine to support his lungs, and an occasional ring from my dad requesting some type of service. It was kind of cute in the beginning, like a customer asking for some food or water. Things kind of seemed normal, where he would read the news on the iPad and even have short conversations with us.
Meanwhile my family were having discussions about finances and the financial implications of having a night caretaker if this lasted weeks or months, and what are the financial thresholds a family can bear.
I think as a society we don’t talk enough about end of life and what is a good way to die? When a parent isn’t able to take care of themselves, what do we do? How much do we pay? Who is going to take care of the person? What kind of hardships would be spread amongst family? Do you want to be there to witness last moments? It seems cruel to equate finances in context of one’s life, but it is an important topic to broach.
When hospice care is at home, there is an unfair burden placed on the caregiver as they are expected to help manage medication for comfort vs lucidity of a person. Each day felt like an impossibility of choices. Administering medication for comfort often results in sedation, while withholding it can lead to suffering.
I give my mom a lot of credit for having numerous conversations with my dad about advance directives and his end-of-life wishes, ensuring that the family had clear expectations about the path to be taken.
As the days progressed, one of the nurses noticed his breathing and said he was struggling. We had a frank conversation about what does it looks like when a person is about to die. She warned us that a common pattern is that people have moments like they are completely normal with a day of a burst of energy, then crash quickly.
In the first week of January he passed away, peacefully and comfortable in the evening.
Sometimes, we reflect on this situation and ask where God was in these moments, why he wasn’t healed, and why a life expectancy of 1-2 years shortened to just weeks.
My approach to prayer is to ask for a specific outcome, such as healing, but if it doesn’t occur, I trust in God’s grand plan regarding life and death.
Throughout this ordeal, there have been many small blessings. First off, his wish and desire to go home were fulfilled, and the last medical treatment plan enabled him to improve enough to leave the hospital.
The second blessing was having a caregiver to cover the nights, starting from the first night after his discharge, allowing my mom to get some sleep. We were panicking when he got home because I knew my mom was not in a condition to stay up all night.
I’ve heard that losing a parent is one of the hardest experiences a person can go through. I’m still processing the loss, but surprisingly, I don’t feel a sense of guilt. By this, I mean that while he was healthy, we, including my mom and partner, spent a lot of time traveling together and had a good relationship. However, it doesn’t mean that there isn’t pain in my heart as I wish there were 10-15 more years to enjoy with him.
In 2014, my partner and I went to Mexico with my parents and this was the first international trip I took with them as adults. We had tons of adventures where uh, I literally got the car stranded in the middle of nowhere driving to a snorkeling spot in Mexico and I was surprised at his grace because my dad was super chill about. There was another trip to Mexico where uhh the car overheated when we went to a mountain town (buyer beware caution, if you ever travel with me, expect some shenanigans). And most recently my parents always wanted to go to Europe so we went to Italy only this past June. The trip was successful in my eye because a) they didn’t lost b) they didn’t get robbed. My dad was usually quiet, but as we took some private tours through Rome, I was surprised at his inquisitive nature about the surroundings around us about Roman culture and life there.
Since 2014 I have been intentional about traveling with my parents as much as possible as I know there would be some point of time, they would not be physically able to travel due to mobility issues. But nowhere in my wildest dreams did I expect this adventuring to be cut short by a fast-moving cancer.
The loss of a parent is strange, and grief comes in waves. It’s not like the world stops, but there are certain intense memories when I reflect that cause tears to fall. It is a balance of a completely normal day, then a realization you no longer can say “my parents.”
The days after a loved one passes through involves the immediate grief to be processed, the need to support family members, but also the huge logistical task of planning a funeral. It is no different than planning a party oddly enough.
I do have to give credit to my mom, as she had an inkling of the seriousness of my dad’s condition, so she already bought a funeral package near her house. This significantly alleviated our stress, as the costs were covered and the arrangements mostly preselected.
We went to the funeral home the day after my dad’s passing, encountering a surreal experience akin to buying a car. There was the base package that was already taken care of, but if you want, you can pay more to upgrade to a fancier casket, or pay more for a fancier box for the ashes. Fortunately, the staff had the sensitivity to inquire about upgraded packages, but not to push anything.
The funeral staff also had an odd warning for us that we might get calls from scammers posing as a funeral home to verify information. A couple days later, on my dad’s cell phone there were actually a couple of voice mails from fake funeral homes asking to verify information. A part of me wanted to call them back just to see where the scam would go, but I dropped the issue. Googling around, this is actually quite a big issue
It makes me wonder when someone dies, how exactly did these people get my dad’s cell phone number? I wonder if there is a black market for death records someone on the dark web. It is quite sad that people would prey on people at their most vulnerable.
The reality is when someone passes away, financial considerations come into play. One option presented was to keep the ashes at the funeral home, which would cost an additional $4,000. My mom thought about this for briefly, but since my dad expressed wishes for ashes to be returned to Vietnam, we realized that amount of money could essentially cover a trip there.
I was responsible for creating the memorial photo slideshow during the service and wanted to give a slideshow of dad throughout the decades. Fortunately, both my mom’s and my Google Photos were active, allowing me to gather photos via image auto-tagging. I then wrote a Python script to rename the files by date for chronological organization and added date-time stamps on the bottom right of each image.
At home, my dad, and as I later learned his brother in Vietnam, were both significant packrats. A theory suggest that growing up in conditions of scarcity may lead to hoarding as a protective mechanisms.
Over several days, I sifted through my dad’s stuff, finding a collection of old cables, cell phones, old laptops, random trinkets until I discovered an old mini dv camcorder and about 30 tapes. After locating the correct power adapter, I played the tapes back and found that the tapes spanned 2007-2010. During that time, my dad had just set-up the camcorder and recorded special occasions with the camera and tripod just sitting there.
While creating the slideshow, I felt a pang of sadness at having many photos, but few videos of him. However, this discovery filled that gap with raw footage of him interacting and talking with family – precisely the memories I longed for.
In today’s society there is a strong craving for the perfect ‘Instagram’ photo, a trend that I have fallen to also. However, I’m come to realize the most important media is ones that captures the raw authenticity of one’s self without filters or edits. The videos of dad just walking around and doing mundane stuff really has brought me the most joy. Maybe it is because I am afraid as the days and years go by I might forget what he was like, his speech, and mannerisms.
The next puzzle was how do I digitize such an ancient format as the only input was firewire. After a bit of googling, I bought a PCI-e firewire card on an old windows desktop at home, and managed to digitize all the videos after a lot of fiddling. I captured it first in .avi, then converted it to h.265 which is a newer video codec.
There was an 1.5 hour video that my dad recorded which took place in Christmas 2009. The video was just of us eating and opening gifts. Maybe because of smart phones, the whole set up a tripod and record for hours during an event isn’t too popular, but maybe this is a tradition worth reviving.
Dealing with the grief has been tricky as we don’t have many playbooks in life to learn about this. However, there are two things that have stood out to me which were helpful.
- When I saw a friend after the passing of my father he asked me, “do you want a normal day, or do you want to talk about it”. I never really thought about it, but as the person dealing with grief, you do want to control the narratives of how your day goes. Some days I want to talk about it, some days I don’t.
- A friend sent me a text message and said, “as much as you are there supporting family, don’t forget to take time to grieve for yourself.”
Another unexpected blessing, and something to consider with elderly parents is their online accounts and access to their e-mail. I fortunately set myself as the 2 factor authentication back-up so I could log in to my dad’s e-mail to get access to important documents. Also having all his phone pin codes so I could long in was helpful, as some apps were sending SMS messages to log-in.
The pamphlet “Gone From My Sight – A Dying Experience”, a book given to us when my dad entered hospice care in retrospect was eerily accurate in the months, days, and hours until the end of life. https://www.amazon.com/Gone-My-Sight-Dying-Experience/dp/B00072HSCY
When I encounter people I don’t often see, I briefly mention the major news, talking about it for a minute or two, before shifting the topic. I feel it’s important for them to be aware of this change in my life, but at the same time, I’m conscious of not letting it dominate our entire conversation.
When he was diagnosed with prostate cancer the first time around and beat it, he was talking to me about this verse and how he enjoyed it.
A season for everything
3 There’s a season for everything
and a time for every matter under the heavens:
2 a time for giving birth and a time for dying,
a time for planting and a time for uprooting what was planted,
3 a time for killing and a time for healing,
a time for tearing down and a time for building up,
4 a time for crying and a time for laughing,
a time for mourning and a time for dancing,
5 a time for throwing stones and a time for gathering stones,
a time for embracing and a time for avoiding embraces,
6 a time for searching and a time for losing,
a time for keeping and a time for throwing away,
7 a time for tearing and a time for repairing,
a time for keeping silent and a time for speaking,
8 a time for loving and a time for hating,
a time for war and a time for peace.
It’s kind of an interesting choice because this is not really one of those traditional Bible verses used for comfort. But this choice shows his character because at the end of his life he openly and bravely accepted his mortality. He told us, don’t worry about me, I’m ready to go.
As tough as this was to hear, this was his last gift to us accepting God’s will and to be at peace, thereby bestowing it to us when he passed away.
Rest in peace dad.