Lessons Learned

Thank you for following me through the 20 bleakest days of my life as my mother fought and lost her brutal battle against COVID-19. I wish I didn’t have to go through it. I wish I didn’t have to write about it. By sharing my experience, however, I hope that people will take this deadly virus seriously. The pandemic is far from over. In this last post on COVID-19, I would like to share the lessons I have learned. God forbid, if it happens to you and your loved ones, I hope you can use these tips to help you navigate the crisis.

If you think you have been exposed to COVID-19, quarantine yourself. Do not do anything for your parents, especially if they are in their 70s and 80s. Ask someone else to take care of them. That alone can save their lives. If you think your parents have been exposed, get them tested. If they tested positive, started coughing, with oxygen level below 92%, bring them to the hospital to start the treatment immediately to prevent them from getting pneumonia. Once they have pneumonia, they will be in serious trouble.

If you were not infected with COVID-19, you could take care of your infected parents and still keep yourself safe. Just stay calm and take all the precautions. Wear double masks (N95 inside and blue mask outside), face shield, latex gloves, and a trash bag over your clothes. To keep your immune system strong, take Vitamin D3 and Zinc. If your parents were too weak, help them put on their mask. My physician advised that I could only stay with my mother no longer than 15 minutes in her room, but that was impossible. Every task took 30 minutes to an hour. She coughed on me when I tried to get her to sit up on her bed and I couldn’t let her go. In addition to being close contact with my mother, I lived in the house with two other COVID-19 victims. I worried that I put myself at risk, but taking every measure worked. I tested negative. If you have to take care of your parents with COVID-19, do it safely. They need you.

If your parents have to be admitted to the hospital, contact your family members or friends who are in the medical field. Having an expert on your side helps you make better decisions for your parents. I was fortunate to be able to tap into a family member and a few friends who were willing to help. When speaking to your parents’ attending doctors, have your “family medical advisor” listening in to help ask medical-related questions or clarifications. Ask your “family medical advisor” to explain the latest treatment developments such as Remdesivir, Dexamethasone, Convalescent Plasma, and proning. Ask your “family medical advisor” to explain the pros and cons of the mechanical ventilator as well as tracheostomy. My “family medical advisors” even came up with a list of questions for me to ask my mother’s attending doctors:

  1. Can we get a list of her medications?
  2. Was she on Remdesevir or Convalescent Plasma? For how many days?
  3. Is she still taking antibiotics?
  4. What are her labs (white blood cells, inflammatory markers, etc.)?
  5. Is it still possible to keep the ventilator going? Why or why not?
  6. Is she uncomfortable? Is she suffering?
  7. Does she require high pressure and can’t keep her level high?
  8. Does her brain get enough oxygen?
  9. Does she have multiple failures? Liver, kidney, heart?
  10. If you think that you have done all that you can for her, can you help us transfer her to another hospital that willing to treat her?

The last question was just incase we needed to transfer, but most of the hospitals were also overwhelmed. If you know physicians working in the hospital where your parents admitted, reach out to them. When we changed our mind and wanted to put my mother on the ventilator, I could not get a hold of her attending doctor at 11 pm. Luckily, when I reached out to a friend’s spouse who worked in the hospital, she happened to be covering my mother’s unit that night. She took care of transferring my mother into the ICU immediately. She read her chart and told me about my mother’s condition. She also notified me that my mother had refused to take Remdesevir (more on this later). Although she thought it wouldn’t help, she said, “It is fair to give the ventilator a try so that you won’t regret it.” I wish she was my mother’s attending doctor.

It is absolutely crucial to be cooperative with the medical team in the ICU. Your parents’ lives are in their hands. Even if they strongly advised you to pull the plug, you don’t have to be combative with them. You don’t have to make your decision right away. Just take in all the information they provided to you and think it over with your family. If you feel that they were giving up on your parents, get the palliative care involved. Just remember that whatever decision you made for your parents, you came to the conclusion based on your love for them. Don’t beat yourself up if the outcome came out the same. You had done all you could for your parents.

Your goal was to help your parents understand clearly what they were getting themselves into so they could make their own decisions. This is a challenge during the pandemic because you can’t be with them and it is even more challenging if your parents don’t understand English. Yes, they have interpreters, but interpreters’ job is to interpret what the doctor said, no more no less. They were not there to explain to your parents about her condition. In my mother’s case, the doctor wanted to start her on Remdesevir so he asked her if she wanted to take it. He warned her that this drug could harm her liver and kidney; therefore, she refused to take it. If I were in the room, I would explain to her that if she doesn’t take this drug her lung will fail and she will die. Her liver and kidney would be useless if her lung failed. I didn’t know she refused this drug until my friend’s wife who was covering her unit told me. She asked me if I still wanted my mom to get started on Remdesevir, but it was too late. She was no longer qualified as her organs started to fail.

It is absolutely crucial that you request to have you included in all of your parents’ decisions, especially if your parents’ English is limited. Initially, my mother refused to get on the ventilator and I honored her wish until later on I found out that she did not fully comprehend her condition. She told me that she wanted to go home, eat some hot food, get some rest, and she would recover. I had to explain to her that was not the case. If she were to go home without an oxygen machine, she would suffocate and die. The reason they didn’t discharge her from the hospital was that she could not breathe on her own without the Vapotherm and the Vapotherm was already maxed out. I explained to her that either she was going to die slowly on the Vapotherm or moving forward to the ventilator. She agreed to move to the next step.

In retrospect, she might have made the right decision based on her own knowledge. What she didn’t know couldn’t hurt her. We took the chance and she fought on until there was absolutely nothing left. She held on as long as she could for us. I was proud of her and she will always be my hero.

The Finale

Sunday evening I called into the ICU to get an update on my mom’s condition. Her nurse said she was still the same. I asked her to set up Blue Jeans (a video conference app) so I can see and talk to her. This time, the nurse put the camera really close to my mom’s face. To my dismay, her face and neck were like balloons. I checked yesterday’s screenshot she was not swollen that much. I showed the video to my sister and both our hearts sank. We decided immediately, it was time to pull the plug. Since it was already late and the doctors weren’t around, we decided to wait until the next day.

I didn’t talk much with my mom because I wanted to give my sister some time to talk to her. I lay down in bed, but could not sleep. I could not get her image out of my mind. I tried to read, but it was not helping. I finally went to sleep around three in the morning. I woke up around seven and felt tired. I sat down at my laptop and revised the obituary I had written, with my wife’s help in translating to Vietnamese. Around 9 am, I called in to let the nurse know that we were ready to come in to take the tubes out. She immediately got a hold of the doctor to talk to me. That wouldn’t happen if I didn’t tell her I wanted to pull the plug.

We made an arrangement to come into the ICU at noon. When we arrived at the front desk, a chaplain came down to bring us up. She took us to the waiting area and went in to get my mom’s nurse. When they came back, the nurse told us that she would take the tubes out first before we could come to see our mom. I asked her if we can see her first before she removed the tube. For our safety, she claimed that she didn’t want us in the room because the coronavirus would come out of my mom’s mouth. If that was the case, we could stand outside and watch or take a quick look outside the room before she removed the tubes. The nurse was instructed not to let us in until the tubes were off.

The medical team really wanted to pull the plug and they took every measure to make that happen. They didn’t want to take the risk of us backing out after we see our mother. I was sad and disappointed that they still treated us that way even though we were the ones that made the request to remove the tubes. I could have told her that I would not authorize to pull the plug unless we get a chance to see our mom first. We could just walk out right at that moment and let my mom continued on the ventilator, but I was too distress and too hurt to put up a fight. I didn’t want my mom to continued to suffer. My sister was in tears trying to plead with them. I told her let them take out the tubes.

When we came in, our mom was all swollen up. I held her hand and water seeped out of her skin. I apologized to her that I had kept her suffering. I asked her to forgive me and to please let go if the pain was too much to bare. I let her know that she will always be in my heart. I thanked her for all the sacrifices she had made throughout her life to raise me. I appreciated all the love and joy she had given me. I reassured her that I have become a man now and I will be able to take care of myself. She didn’t need to worry about me anymore. Tears rolled down her cheek.

My sister also talked to her and more tears came out of her closing eyes. We both stunned. Despite all the distortions and deteriorations caused by the machines, she was still beautiful. Her skin was still shiny and soft. Her hair was still smooth and silky. The wrinkles on her face showed the passing of time. She had lived a long, hard-knock life.

Five minutes later, the machine beeped continuously. The chaplain came in to informed us her heart had stopped. She passed away at 12:46 pm on December 28, 2020. Although I was able to get the last words in, I told her that our conversations will continue. I will always be her son even in our next life. Get some rest now, mommy. You deserve it.

Stop

I am sorry, mama. I can’t watch you, from afar, go on like this. Let’s put an end to all the suffering and torturing. I was hoping for a miracle, but there’s no such thing.

I have come to accept the reality that I will lose my dear mother on earth, but I will always have you in my heart and spirit. We will continue our conversations just like we were having through FaceTime these past few weeks. Although you were sedated, I knew you could hear me. I saw you nod your head when I talked.

I knew death was part of life and I had been prepared for the day that you would have to leave me. I was not ready to see you go this way. I couldn’t let COVID-19 take you away from me so abruptly. The doctors told me to let you go, but I was still holding on every bit of last hope. It has come to the point that nothing on this earth could help bring you back.

I had shed so many tears alone in your room thinking about you. I knew crying wouldn’t change anything, but I couldn’t help it. Writing to you and about you helped me cope with the reality at hand. I know I can always reach out to you through my thoughts and my words.

I will miss you dearly, but I know you will always be beside me like you had always been throughout my life. Please let yourself rest, mama. You had been through so much all your life. It’s time to set yourself free. I will meet you someday. Please save a place for me. I love you!

If I Were Infected Instead

When my mom asked me to come to take care of her, I was terrified. I was about to live in the same house with three positive COVID-19 victims. The chance of me getting infected was high. When I tried to help my mom getting up out of her bed, she coughed on me and she couldn’t even put her mask on. I spent half an hour to an hour in her room each time to help her moved around.

Thanks to the masks, the face shields, the gloves, and the trash bags, I tested negative of COVID-19 over a week ago. As long as I take all the precautions, I shouldn’t have to be afraid of COVID. I didn’t know it until I lived through it. In retrospect, I could have intervene earlier. I could have done something for her. By the time I learned about my sister’s condition, it was already too late. I knew my mom already caught it and I hesitated to come until she told me to.

Although I have dodged the bullet, I wish I could be infected instead of her. If we could trade places right now, I would do it in a heartbeat. Watching her suffer is much more painful than suffering myself. Am I doing the right thing? Why don’t I pull the plug? What the fuck am I waiting for? A fucking miracle? Yes, a fucking miracle, indeed!

Torturing

The doctor delivered more bad news. Her condition is getting worse. He urged us to think it over. If we pull the plug now, she will go within a couple of hours. If we keep going, she might be suffering.

My oldest sister pulled herself out of the decision-making responsibility. She doesn’t want to see her suffer, but she doesn’t want to pull the plug either. Unfortunately, we don’t have a third option.

Each minute my conscience tortures me, especially after talking to the doctor. The easier decision is to pull the plug and let her go. That’s the end of it. The harder decision is how far can we go? The doctors don’t seem to be optimistic about it. I respect their medical expertise, but I am still holding out hope if she can still hold on.

I don’t know if I am making the right decision for her. I am now living with this guilt inside me. What if we didn’t go this far? Would the outcome be the same either way? It looks like that’s where we’re heading.

Merry Christmas

The doctor called everyday to tell me my mother’s condition was getting worse. Each time he let me know if she were his mother, he would cut her loose. I appreciated his suggestion, but she is not his mother. Until he is in the situation himself, it is easier said than done.

In our video call last night, I told my mom about her condition according to the doctor’s report. I asked her if she still has the strength to fight on. If not, she should just let herself go. I asked her to nod her head if she could hear me. I saw her head moved, but I was not sure if that was her response since she was sedated. At this point, we just have to keep going. Still water, still drawing (còn nước, còn tát).

After our conversation, we watched Paris by Night 18 on YouTube together. The Christmas program brought back so many fond memories. Don Hồ, Kenny Thái, Dalena, and Thái Tài were the young stars back then. Even Chí Tài, as a band leader, already showed his comic side in his performance. Rest in peace, anh Tài. When Ái Vân performed Đức Huy’s “Và con tim đã vui trở lại,” I couldn’t hold my tears. How I wished my mother’s heart could be full of joy again.

I wish you a wonderful holiday season with your loved ones. If you can be with your mother, don’t take it for granted. If you can’t be with her physically, which is not a bad thing this year, give her a call and tell her you love her.

An Act of Kindness Will Always Be Remembered

I spoke to my cousin yesterday and she told me a wonderful story about my mother. I couldn’t hold my tears.

When my cousin was about seven years old, she did something bad. She was afraid that her father would spank her. Her mother was always busy with the family’s business; therefore, she couldn’t come to her. She ran away from home. My mother took her in and took care of her. My mother never made any judgment about her. She stayed with my mother for three days until her dad cooled down and forgot all about it.

Half a century later, my cousin still remembers vividly how well my mother fed her and treated her. My mother never told me this story. She probably doesn’t remember it, but my cousin never forgets it. Although they have completely different personalities, I have seen a special bond between them. My mother would trust anything my cousin told her.

As we’re planning and preparing for the worst, my cousin shared this story because she wanted my mother to have the burial plot her mother had bought for her. If my mother can’t make it through this time, she would like my mom laid to rest next to her mother. The sisters can be together again in heaven. That was an offer I could not refuse. I am grateful for my cousin’s generosity and story.

I told my mother the story through FaceTime tonight. I am sure she heard me. I did not, however, tell her about my cousin’s offer. I am sure she would be touched as well.

Being Prepared

As we’re hoping for the best for our mother, we’re also preparing for the worst. After my father-in-law passed in 2012, I brought up the conversation with her. In case something happens to her, would she like to be buried or cremated? She never gave me a straight answer. She told me she would think about it. I reassured her that I was not wishing her death, I just wanted to be prepared so we can make plans for her.

I gave her examples to help her make her decision. For instance, my mother-in-law had already bought a lot right next to her husband. Except for the date she will pass, her plaque already had all of her information on it. Whenever we visited our father-in-law, we would hand out burning incense to the kids to post on their grandfather’s grave and they would always post some on grandma’s side as well. We just smiled about it. I also told her about my wife’s aunt’s and uncle’s wishes. They wanted to be cremated and their ashes to be spread on the mountain instead of in the ocean.

I revisited the topic with my mother over the years. One time, she told me she doesn’t want to be burned. At a different time, she wanted to be cremated and her ashes to be spread on the mountain. Still she didn’t give me a definite answer. She was still thinking about it. Even after she was admitted to the hospital less than two weeks ago, I asked her again and she gave me the same answer: still thinking about it.

It was clear that we have to make the decision for her. I talked to my sisters and they wanted me to make the decision. Because she mentioned she doesn’t want to be burned, I eliminated cremation. I told my sisters that once our mom passed, I would like to bury her body in Virginia. They were fine with it.

When we received the 3 am call from the doctor to go see her for the last time, I asked her once again if she had made a decision and yet she still told me she was still thinking about it. I told her that if she couldn’t make the decision, I would do it for her. I told her about my plan to bring her to Virginia and she said OK. I also made sure she knew that was just my plan, but she can tell me her wish any time. If I don’t hear from her, I will proceed with this plan.

As I was making phone calls to funeral homes, I asked my cousins if they have any recommendations. My aunt and uncle had passed years ago; therefore, they had been through the process. As we talked, they asked me about her resting place and I told them my plan about taking my mom to Virginia.

Half an hour later, my cousins called me back and made me an offer. When their dad passed away years ago, my aunt bought nine additional lots for the family. Her wish was for anyone in the family who would like to bury there. My cousins are now honoring her wish. I discussed the option with my sisters and they preferred it over taking her to Virginia. I won’t get to see her often, but my sisters can visit her often. I could not refuse the option because my mother will be right next to her older sister and brother-in-law. In Virgina, she would be lonely. I am so grateful for my aunt’s generosity. When she was still healthy and alive, she was sharp, decisive, and ahead of her time. I had so much admiration and respect for her business mind as well as her compassion. Thank you dì Hai. Please look out for my mom when she gets there.

I am glad we got that part down. We paid the funeral home a visit and went over everything from picking out a casket and a vault to making the arrangements to getting down the quotes. It’s a big ticket item; therefore, the staff has been very supportive, patience, and accommodating.

As far as religious rituals, I let my sister take charge of that part. Because my mother believes in Buddhism, we would have a brief service for her. She has been in contact with the monk and the temple.

Of course, we would rather not have to go through any of these, but we needed to be ready. Our hope is that she will continue to hold her own.

A Glimpse of Hope

Yesterday, Rachael, a nurse practitioner from palliative care, contacted me about my mother’s case. To put me at ease, she asked me personal questions about my mother. Where was she born? What does she like to do? Where did she work? Does she like to live in the U.S. or Vietnam?

I know for sure my mother wouldn’t want to live anywhere in the world but here. She believes the U.S. has the best healthcare system in the world. And yet, when she is at the most critical time of her life, the system fails her. I shared with Rachael about the experience we had in the past week and my concern that the medical team had given up on. She assured me that was not the intention and she set up a conference call to talk to my sisters and I about my mom’s condition.

In our conference, I emphasized the importance of understanding what my mother wanted instead of what she thought she wanted. For instance, she refused to take Remdesivir because the doctor told her through the interpreter that Remdesivir could be bad for her liver and kidney. She did not understand that if COVID took over her lung, her liver and kidney would be no good. She refused the ventilator because she didn’t realize that she would die with not enough oxygen. After I explained to her the outcome of her decisions, she told me exactly what she wanted.

Rachael finally understood where I was coming from. She heard me loud and clear. I was not making the decision for my mom. I was helping her to understand her choices so she can make the decision for herself.

At this point, the medical team understands that we want to go forward with the treatment. If her body continues to fight, let her fight for her life. If her body gives up, she will go. The medical team has done what they could for her.

Tested Negative

I spoke to Carly last night to get an update on my mom. Carly was wonderful. Night nurses seemed nicer because they were less busy than the morning nurses. In the morning, the pulmonologist told me she needed 100% oxygen. I requested for her to be proned. At night, she only required 65% of oxygen. Proning worked.

I requested Blue Jeans to see my mom. I talked to her for a while and let her listen to the Buddhist chant, “Nam mô a di đà phật.” I watched Carly change the position of my mom’s arms and put a warm blanket over her back. I let the video continue until I fall asleep.

Later on today, we will discuss with the Palliative Care team to see what we need to do next. Is there a path forward if we keep her on the ventilator?

I miss my wife and kids. I miss all the wonderful activities we’ve done together. I miss rollerblading, ice skating, biking, and just running around the playground. My wife and my mother-in-law must be exhausted with the four highly energetic boys. I am so grateful for them at the time I needed to focus on my mom.

I am grateful for my sister’s ex-husband. He cooked and brought food over for us everyday. I need all the strength to pull through. I’ve been taking vitamin D, zinc, and apple cider vinegar, which comes in pills. I am not sure how effective they are compared to the liquid form. I’ve been taking walks despite the snow. I am mentally drained, but physically fine. Even without coffee, sleep has been hard. I still wake up in fear and can’t get back to sleep. I have not touched a drop of alcohol.

I have tested negative for COVID-19. Despite living with two positive COVID patients and had close contact with one, I managed to dodge the bullet. Mask works. Please, please, please wear your mask and save lives. My mom’s situation could have been avoided if we have done our part. What we can do now is to stop the spread.

I will be spending this Christmas and New Year alone and away from my kids, but I hope that won’t be the case in many holidays to come.

Thank you for reading this blog and sharing your support. I wish you a safe, happy holiday season. Take good care of yourself and your loved ones whether being apart or together.