This is going to be a long, sad blog post. So here's a trigger warning/spoiler alert: grief and parental loss ahead.
On Christmas Eve, I got a call from my dad's skilled nursing facility. It was the nurse manager, and I had a bad feeling in my gut when I heard his voice. He told me that one of dad's roommates had tested positive for COVID when he was sent to the hospital and that Dad had just tested positive, too. According to their rules, Dad had to be moved to another section of the facility: their makeshift COVID ward. I thanked the nurse manager for the update and asked him about Dad's symptoms. Dad had been recovering from a UTI, so we thought he had been a little more tired than usual from fighting that.
After I hung up, I got another call from the nurse manager responsible for COVID updates and vaccines. Over the last few months, we had gotten into a cadence of chatting once or twice a week. I hadn't heard from her in a few days and it turns out she had been out for a while recovering from symptoms after her second vaccine, but wanted to call to let me know about Dad's positive test, too. She said he had actually tested positive twice: they did a rapid test that came back positive and to be sure, they did another before calling me. I asked her about his symptoms, what they would be doing to treat him and what would happen if he needed to be hospitalized. We hung up and I updated my sister.
To be quite honest, we didn't take the news well. We opened a bottle of wine and I tried not to worry. My stress and anxiety level was high though, and I snapped at my mom two days later.
The nurse manager responsible for COVID updates called me again later, telling me they would need consent for Dad to get vaccinated eventually, but that since he had an active case, he wasn't eligible to be vaccinated when the rest of the facility's patients were being vaccinated that week. I remember thinking, dammit he was so close.
Around 11PM on New Year's Day, I was on the couch getting ready to go to bed when my phone rang. It was the skilled nursing facility's doctor, the one who had been supervising Dad's care the whole time he was there, calling me on his cell phone. He apologized for the late call and told me that they were going to have to send Dad to the hospital. Dad's oxygen saturation levels had dropped dangerously low, and even though they had stabilized him and were giving him 8 liters of oxygen, he clearly needed a higher level of care.
The doctor, perhaps realizing he had previously shown some optimism bias about dad's recovery, was quite honest with me on this call. He said that at this point, the hospital would likely ask if we wanted dad to be intubated. Since we had already discussed dad's POLST form and what we guessed were his wishes (no CPR, no invasive measures), he knew our answer would likely be no and wanted me to be ready for that conversation.
I asked him if there were any other options and he said, "I don't think he's going to make it, I think you should be ready to let go." He added, "If it were my dad, I would let him go." It was the answer I partially knew was coming, but didn't want to hear.
The doctor said the hospital would likely be able to give Dad some morphine to relieve his pain, but if we weren't going with intubation, there wouldn't be much else they could do. He said that if we wanted to just opt for comfort care, we could have the ambulance turn around and just have them administer morphine at the skilled nursing facility. I asked him if he knew which hospital Dad would be going to, since hospitals in the county had been in and out of diversion that week, overflowing with COVID patients. He couldn't say for sure.
When we hung up, I could sense his sadness.
Afterwards, I reached out to a doctor friend for her thoughts on the situation and my sister and I started updating our extended family. We stayed up late to make sure that Dad made it to the hospital and we knew which hospital he was at (Hospital #2, if you're keeping track from earlier posts). I chatted briefly with the ER doctor about Dad's medical history and confirmed our wishes for the POLST form. This doctor, being a bit more detail oriented than most, pointed out we had previously filled out some contradictory choices on our POLST form and I let him know what our updated wishes were so he could update Dad's chart.
The next day, it took us a few tries to get through to a nurse and get an update, but we did. Afterwards, I got a call from a case manager who seemed to have stale information about Dad's condition (she said he was on lower oxygen than what the nurse had told us).
Honestly, I could tell this case manager was an older white lady who meant well, but really she just kept oversharing about her own personal experience with her parents' death. I could tell her experience was relatively recent, and she might have thought I was older than 28. She also started the call with "I'm calling about your mom" and I had to correct her - she gave a flimsy excuse for misgendering Asian names, and I just wasn't in the mood to explain to her the amount of trauma caused every time I had received a call about "my mom" over the last year. All in all, she was not helpful.
Out of the blue, that afternoon, I got a call from an intake person at a hospice service, and that's when I got angry. You see, no one had actually bothered to talk to me about hospice at this point. None of the doctors, nurses or the case manager. Having previously researched it, and read books like Being Mortal & When Breath Becomes Air, I understood what it was, but it felt like the doctors, nurses and case manager had been tiptoeing around the gravity of Dad's situation and using euphemisms when really, honesty and transparency would have been best.
Just imagine dealing with the worst situation of your life and suddenly getting a call from someone ready to help your parent die.
There was more back and forth, and another call with the case manager (at this point, the only person we could reliably reach in the hospital), during which she said, "Well really the doctor should have had this conversation with you and I'm not really prepared but I can share from my own experience." Again, not helpful. She apologized and said everyone was overwhelmed and busy. I understood, but it felt like we were being forced to make decisions without a complete picture of Dad's health and that I was doing a bad job as a caregiver and a daughter.
I have to point out here that the lack of empathy in the American healthcare system is not only costing us money, but it also causes a lot of pain for patients and their families. A five minute conversation with the doctor would have avoided all of this back and forth, wasted time, and emotional distress. And this is coming from someone who had the privilege to have access to friends and family who are doctors and nurses, who gave us as much advice and compassion as possible.
Sensing our hesitation with moving forward, the hospice service had an intake nurse call us to answer questions and talk through Dad's potential plan of care. The main reason we were hesitant was because no one, between the case manager, nurses on the COVID floor and hospice intake manager, accurately explained how in-hospital hospice care would work. The way they were describing it, it sounded like Dad was going to be left alone or neglected in an empty hospital room, and that someone would eventually find him and call the hospice nurse when he passed. We already knew he didn't want to die in a hospital, and I could not further consent to him being neglected.
It turns out, as the hospice intake nurse explained, with in-hospital hospice care, Dad would stay in his current room and the floor nurses would be responsible for him, but the hospice service would also send a nurse to check on him daily, adjust his medications and provide updates to us. I asked if he would be able to stay on his Parkinson's medications, to help with his already limited movement which irritated him when he was awake, and she said there would be no guarantees but she would ask. I asked what would happen to the feeding tube (g-tube) he was on, and what would happen to the supplemental oxygen they were giving him. I asked if it would be possible for my cousin or aunt to come and say goodbye in person (my sister and I wouldn't be allowed due to the 14-day quarantine required from out-of-state travelers at the time). I was told that since Dad had an active case of COVID, they would only be allowed to see him from outside a window (impossible since he was on the fourth floor) or outside his door (also impossible since it was a solid wood door, no glass).
When my sister and I got all of our questions out, it was reassuring to finally speak with someone who could explain what we were being asked to consent to.
We decided to move forward, and then had to fill out paperwork, including a new POLST. As is standard with most hospice services, we were told that when Dad passed, we would receive a call from the hospice nurse. The whole time we were going through this, I was asking anyone and everyone for some sort of timeframe so we could get there to at least be closer to Dad. I didn't want to be on the plane when he passed, and I was told that they might have some sort of answer after the intake visit.
The next day, Sunday, we asked the floor nurse to help us set up a Facetime with Dad. Their iPads weren't updated, so we couldn't do a multi-way call, and we ended up with 2 laptops: one setup to Facetime him, which we faced towards another laptop that had a Zoom with our extended family on it. We stayed on for hours, just talking to Dad one by one. One of my cousins asked a pastor from Dad's church to join for a prayer and played some songs. Dad was mostly asleep, and he was on comfort medications, but would occasionally move or moan.
I don't think I've ever cried more in my life than on that call.
On Monday, January 4th, I got a call from the hospice service case manager who introduced herself and asked us to fill out intake forms again, since the weekend team hadn't "gotten them completely right". She sent me a list of funeral homes to start calling and was, overall, very patient and understanding, in guiding me through what was needed. After some more calls from the hospital social worker and the hospice chaplain, the hospice nurse called and gave us a timeframe: 48-72 hours, or "imminent". We also went through his medication list and how they were upping his morphine, but he had been taken off other medications, per the hospital doctor's orders (not the hospice doctor - two different doctors), which was again, frustrating. That evening, I got another call, this time from the hospice social worker who introduced herself and provided yet another list of funeral homes.
My sister and I decided to fly in the next morning, and stagger our flight with my partner who would follow in the evening. That way, I could forward my calls while in the air, and we would make sure someone was always available. We stayed up late going through as much admin work as we could, updating extended family, and then packing.
I asked my sister if she needed funeral clothes and we went through my closet to find something that fit: a black Manning Cartell lace skirt that I bought as part of a coordinated set for a wedding that was postponed in 2020. I found a pair of black Jimmy Choo slingback pumps that I had been gifted and that would fit her, as long as she wasn't walking long distances. For myself, I dug out an old black Theory suit that I had bought at a sample sale during college and wore for hundreds of hours during my time as a summer analyst. I never imagined that I'd also be wearing that suit to say goodbye to my dad.
Our impromptu fashion show was the tiny bit of laughter I needed to survive that day.
The next morning, Tuesday, January 5th, we dropped off our dog with a friend and boarded our flight. While in the air, I missed a call from the hospice social worker. Then the hospice chaplain called when we arrived, just to check in on us, and then our other friends came to pick us up. I asked them to keep the windows cracked and for all of us to keep our masks on the whole ride down from SFO. On the way to my cousin's house, we stopped at Ranch 99 and I ran in to buy snacks and paper money to burn as an offering. The paper money was tucked away in the housewares section, and I'd never realized it was there before.
That afternoon, we got a call from the hospice case manager saying Dad was stable enough that they wanted to see if they could transfer him back to the skilled nursing facility, if we were okay with it. I said yes and they got to work, and I called the social worker back. She had 45-minutes of intake questions for me, including, "Does he [dad] have any grandchildren?", to which I responded, "Well does a dog count?". My sarcasm and humor was not well-received. Meanwhile, my sister started calling all of the funeral homes that hadn't responded to our previous emails. Most were busy.
We spent the night calling for updates on Dad's status and trying to get onto a Facetime. We finally got through to a very overwhelmed nurse right before my partner's flight landed and he made his way to my cousin's house. He walked into the separate apartment/bedroom as we were attempting another three-way call.
On the morning of Wednesday, January 6th, we decided to check out some of the cemeteries we had reached out to, and drove by a church that one of the funeral homes had mentioned was doing outdoor services. I got a few calls that morning about Dad's care: The hospice clinical director told us he would be moved at 10AM, and to expect another call once he was settled. The hospice nurse from the night before told us she increased his morphine again but would be switching it from an IV to sublingual when he was moved and that there would be a new hospice nurse when he was moved back to the skilled nursing facility. The director of nursing at the skilled nursing facility called and said they would have taken him the night before, but the hospital was too busy to transfer him, and that while we, again, couldn't be with him inside their COVID ward, she would ask for him to be placed next to the window where we could see him.
Afterwards, we went to Dad's apartment to start cleaning out his things. We picked up one of his old jackets, an old brown and black leather bomber jacket, and out fell a bunch of coins. We laughed at how the coins were stuck between the tattered and frayed lining pieces. Over lunch, we laughed and gasped as we saw news of the insurrection on our Twitter feeds.
We toured another cemetery in the afternoon and when we left, I realized I hadn't gotten a call confirming Dad's transfer so I called the skilled nursing facility and was told he had just arrived. I got another call a few minutes later from his nurse, who happened to be one of the nurses who was already familiar with him, and she gave me another update and told us where to go to see his window. We pulled up less than 30 minutes later.
All of the shades were down on that side of the building, so we snuck around the windows, peeking in until we found him, sleeping peacefully in a stark, empty room next to the parking lot. We called the front to ask them to raise the shades for us and the nurse moved his bed so he could face us. His window was open.
We took turns giving him updates on what we had been up to, cleaning his apartment and getting plans in place. It felt like we had told him so much of the big stuff that mattered in the last few Facetime calls, that I didn't know what else to say except all the little details. I told him we were getting a new car with lots of parking sensors and that we were getting rid of my partner's "impractical car" (Dad's words, not mine, but hey, it was a sporty FWD sedan and we live somewhere with snow now). We told him about finding coins in his jacket and the wild pictures from the Capitol that morning. We told him not to worry and that we would take care of everything.
And I just remember wanting to stand outside his window forever. But eventually the sun set, and we had to leave. I told him we'd be back in the morning to give him another update.
That night, around 10:45PM, I got a call from a nurse at the skilled nursing facility. He said he checked on Dad at 9:45, gave him his morphine, and then when he went to check on Dad again, he had to get another nurse to help him. Then he said, "He expired at 10:30, I'msosorryforyourloss." I asked why the hospice nurse hadn't been the one to call, and he said they weren't available, but suddenly added, "Oh, they're calling me back, can I take this?". I said of course and hung up.
My sister came out of the bathroom a few moments after I hung up, and I had to get her attention to tell her. I will never forget the amount of heartbreak I experienced in that moment.
Before I'd even had a moment to process, the hospice nurse called and told us she would have to inform the coroner's office because of Dad's COVID status and she asked to confirm our funeral home selection. We had previously given them a name of a home we still hadn't heard back from but had good reviews, and we asked for a few minutes to discuss. We decided to go with another funeral home that my sister had been able to speak with earlier that day, and she relayed their information.
Then we got to informing the rest of our family. I called my cousin first, because even though we were in her house, we were in a separate room with a separate entrance, out of an abundance of caution (we even ordered COVID tests to take upon landing and once we'd been there a few days, even though we planned on staying separated and masked the whole time). She said she would tell her mom, my 4th aunt, in the morning.
I called my youngest aunt, the aunt who immigrated to the US with Dad and who had been his closest family member for decades. I don't know if it's possible for your heart to break again when it's already been shattered, but it certainly felt like it when I called her. I could barely whisper the words without tears. I recounted the nurse's call and the coins we found in his jacket that afternoon, and even just being by his window earlier in the evening. I asked her to call the rest of our extended family in Taiwan, and she pointed out it would probably be best if I followed up with a group text to both the English and Chinese LINE chats we had. She also pointed out that my 4th aunt would see these messages, so it would be best to call her even if she was asleep.
We went to sleep pretty late that night.
The next few days were a blur of informing necessary parties, clearing out Dad's apartment and making funeral, cremation and interment arrangements that would satisfy both the Christian and culturally Buddhist sides of our family.
I'm not particularly spiritual or religious, but I borrowed a clay donabe pot and used it to burn paper money in another friend's parking lot, a tradition meant to ensure your ancestors live a prosperous afterlife. I may have gone a little overboard with the paper money and it took hours to burn it all safely. Afterwards, all of our clothes smelled like barbecue.
And on the morning of the 12th, me, my sister and my partner drove to a local church where we held an outdoor ceremony to say goodbye. Dad was in a rental casket under plexiglass, wearing the suit he originally bought for another cousin's wedding last year. The only other family member in attendance was my cousin's husband. Everyone else, from a few miles to a few thousand miles away, watched the livestream.
Afterwards, Dad was cremated and we picked up his ashes the next day. No one told me you needed a driver's license or ID to pick up ashes, so I left my purse in the car and had to pull up a picture of my license on my phone in order to sign for Dad. Once we picked him up, we headed to the cemetery, where we were scheduled to place his ashes in an outdoor columbarium. This time, my cousin, her daughter, and my 4th aunt and uncle joined to say a few words, pray and sing for Dad.
By the end of the week, we were done with everything that needed to be done in person and headed home. We arranged a 'proper' virtual memorial over Zoom a few weeks later, which ended up being an entire evening of Dad's side of the family and his old classmates...just catching up. I thought there would be more technology issues amongst this crowd, but really, at the end of the day all they were concerned about was: 1) did Dad meet and approve of my partner, Vincent?, 2) could they meet Vincent, too?, 3) if my sister had a boyfriend. That evening aptly summarized my feelings: extreme sadness punctuated by comedic relief.
Even almost two months later, it doesn't really feel real. There are days when the grief is like a wave that completely overwhelms me, and there are days that feel almost normal. There are some shows, movies and books that hit a little too close to home and make me gasp a little before I shed a tear. And then there is the immense daunting reality of loss that we, and half a million other American families, are facing as a result of the previous administration's failure to act and gross negligence on the part of many.
For now, I'm taking it day by day.
If you would like to donate in Dad's honor, please consider donating to one of the following organizations: