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.

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.

Given the lockdown this year, I thought I read much more, but I read 15 books less than last year. I am about 200 pages into Barack Obama’s A Promised Land and I won’t be able to finish it by the end of this year.

This year I read more books in Vietnamese than any previous years. I also read much more fiction than any previous years. I have come to appreciate the good writing in novels. I used to have a hard time wrapping my head around the plots and the characters when I read works of fiction, but I am starting to understand them better. I’ll definitely read more novels in coming years.

I don’t have a goal for next year, but I will definitely continue to read. I might get into more medical materials.

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.

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.

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.

Fuck you for taking my dad. Fuck you for trying to take my mom too. Fuck you, COVID-19. Fuck you, the-worst-fucking-year-of-my-entire-life. Fuck you, 2020!

Last night I asked Kevin, my mom’s nurse, to set up Blue Jeans so I could see my mom. She was sedated and could not hear me, but I talked to her anyway. Kevin brought the camera closer to my mom so I could see her clearer. I put on Buddhist chant for her. We both listened as I fell asleep.

This morning I spoke to a new pulmonologist. I asked him to spell his name and he wondered why. I just wanted to get his name right. He gave me a prognosis. I asked him lots of questions I have been prepared from talking to my doctor friends. He ran out of time and let me go. From our conversation, he emphasized the important aspect of decision-making. Ultimately, the decision is not what we want, but what our mom wants.

I completely understand his point. I have been struggling with making the decision for what she wanted and not what we wanted. The issue is that she did not fully understand what she wanted as well as the consequences of her decision. As her son, I wanted to make sure she had a full comprehension of what she wanted. As medical doctors, they should do the same for her. Unfortunately, I have lost my trust in them in the ways they have communicate to us.

They gave us the two options, but they already made their mind about the option they wanted us to choose. It would be much more helpful if they let us know whatever options we make they will support us all the way. If we have their full support, it would be much easier for us to help make our decision for our mom.

Because I am not in the medical field, I do not understand everything they were telling me. I needed medical advisors to help me out. That’s why I had reached out to friends and family members who are in the field to help me out. I am grateful for their time, patience, and experience. They understand both the medical procedures as well the human compassions on our side to help us make a decision that we won’t regret. That is the way it should be.

Our healthcare system is broken. It needs to be fixed. We need to do something about this. I am grateful to those who had sent messages in regard to my mom as well as their comments on this issue.

It was 1:30 am and I couldn’t sleep. I kept thinking about my mom and the way she is being treated at the hospital. Because she has COVID, the hospital does not allow visitation until when she is near the end of her life. It has been so difficult to make decisions when we cannot be there by her side.

At 3 am on Wednesday, I received a call from a resident doctor telling us to come in because she believed my mother was near the end. We rushed in to see mom. She was happy to see us. She told us that she was ready to go home and asked me if I brought any diaper for her. I told her that I would love to take her home, but she needed oxygen. Without the machine she wouldn’t be able to breath. I held her hand and asked her if she would like to have the doctors do everything they could to treat her. She said yes. We stayed for a while with her and she told us to go home to rest. She knew we were exhausted. We left the hospital and later on the day I called her doctor to request a ventilator. We updated her status to full code.

Friday afternoon, I received another call from the nurse telling us that she is near the end of her life and if we would like to take the ventilator out, we could visit her for the last time. We arranged to meet. Once again we came in and she still was still responding. I asked her if she was hurt or uncomfortable, she shook her head. I asked her if she would like to continue to get treatment, she nodded her head. When we decided to keep her on the ventilator as she wished, the nurse told us that the only reason they let us in was because she was near the end of her life.

I don’t blame them for being confused. My mother has a mind of her own and she changes her mind all the time. What has been consistent is her willing to fight. She refused to take Remdesivir because she was told through an interpreter that it can cause damage to her liver and kidney. She didn’t want to get on the ventilator because she believed she could fight COVID at home. With lots of rest and savory food she eats at home, she could beat it. She did not realize how critical she was and it was hard for us to communicate that over the phone. When we saw her in person and explained to her the situation, she understood right away and she was willing to fight.

I kept thinking how strong she has been just with the past week. The doctors told us twice that she was near the end of her life and she is still fighting. It was 2:30 am and I still couldn’t sleep and I hadn’t had a drop of coffee since the day I came here from Virginia. I needed to be able to sleep to clear my mind. Every time I woke up, I felt the chill running through my bones.

I picked up the phone to call her nurse. It turned out that 2:30 am in the morning was the best time to reach a nurse. I talked to a gentleman and he gave me a brief update. I asked him to set up Blue Jeans in her room just so I could see her. Although she was sedated and couldn’t hear me, I still talked to her. I told her to rest and to let her body heal, but to keep on fighting. I sang “Lòng Mẹ” and drifted to sleep.

Listening to Sarah McSweeney’s story about her denial of care in the hospital broke my heart. My mother is getting the same denial of care from Penn Medicine Lancaster General Health. They have given up on her. They wanted to take her off the ventilator and let her die instead of continuing to treat her.

Yesterday, they let us in the ICU to say goodbye to our mom for the last time. When we arrived, mom was still alert. Her mind is still strong. Her grip is still tight. She has been a fighter all her life. There’s still hope in her eyes. We spoke to her and asked her if she is willing to fight, she nodded her head as tears rolled down her eyes.

We sat down with the ICU doctor and nurses to discuss our options. The first option is to take her off the ventilator and let her die quickly. The second option is to keep her on the ventilator and to continue with the treatment. Although they presented us the options, they already determined that we should let her die.

When we decided that we would like to keep her on, they quickly asked us to leave the hospital. The nurse asked me to give them the consent to prone her, to stick a needle down her neck, and to do all type of invasive procedures on her. I knew she was trying to intimidate us because I already gave my consent to have a PICC line. My mother doesn’t need both a PICC line and a needle down her throat. Proning is fine if my mom needed it. I am not sure what other invasive procedures she was referring to. As it turned out, she never gave me any paperwork to sign. I reminded her that I have authorized full code for my mother. She said they will call me to get the consent. They never called.

We went home in disbelief and disappointment. The physicians and nurses at Penn Medicine Lancaster General Health don’t seem to have any compassion for a human life. My mother’s life is in their hands and they just wanted to get rid of her. I understand her condition and her surviving chance is very slim. If they give all they can and she won’t make it, we will accept the outcome. Giving up on her when she has a fighting chance is just cruel and inhuman.

I am not sure if sharing this information will have any repercussion on my mom, but they are now doing the bare minimum for her. I have been waiting by the phone all day long to get an update on her condition, but no one had reached out to me. I called in and I could hear the gasp from the staff telling each other, “It’s the family that came in yesterday.” The nurse didn’t even bother to give me an update. She asked me, “What do you want to know?” Of course, I wanted to know everything about my mom. Why else would I call? Her respond was, “She is still the same.”

When I requested to have the attending doctor speak to our family medical advisor, the nurse sounded amuse. She put me on hold, but I could still hear her saying, “He said something about a medical advisor.” She came back and told me that the doctor won’t have time to talk to everyone. I understood that and I said the doctor won’t need to talk to me. He would just need to give a prognosis to our advisor. Because our advisor is a medical doctor, the conversation from doctor to doctor would be better. Our advisor who we trust can help us make our decision. Even that seemed like too much to ask for a dying person.

We are going through the darkest time of our life and the physicians and nurses at Penn Medicine Lancaster General Health aren’t make it easier for us. I am deeply hurt and appalled. I hope there are still healthcare workers in the hospital who still have love, compassion, respect, and the willingness to treat sick people. This is America and we are better than this.