My mom, Helen Johnson, became ill we think around Monday November 23rd the Monday before Thanksgiving as she had informed the family that she would not be attending Thanksgiving dinner because she did not want to get anyone else sick. I had a list of doctors and phone numbers that people had given me since my own ordeal in the hospital. These doctors were supposed to be homeopathic who would prescribe ivermectin or hydroxychloroquine or both. I began calling these doctors all of whom were either out of the office for the week of the holiday or not accepting new patients.

I knew from my own experience not to try going to urgent care or emergency room as I knew that she would not get treatment if she tested positive for Covid. She gradually went downhill over that week until Saturday she was unable to move she was so weak. She had gotten in a bathtub with hot steamy water to try to clear her sinuses and could not get out. Again based on my own experiences I did not want to take her to the hospital.

However my brother and I had to make the decision to call an ambulance because we were not qualified for one thing to provide just basic nursing care, but we did not see how she was going to get better without medical attention of some sort. We thought that explaining her circumstances for not getting the vaccine would be helpful for her as we did know that they we’re discriminating against patients who had not been vaccinated. However, this news did not set well with the hospital doctors who basically said we were lying when we said that her doctor had advised her not to be vaccinated until she was able to clear up a urinary tract infection that she had at the time.

Immediately upon finding out that we admitted her to the hospital a friend had reached out and told me what was going to happen and sure enough what she had said to me did happen. She informed me that they were going to try to get her to sign a DNR. That I needed to make sure that I was making the medical decisions for her as I was the one and only family member who was seeing her during visiting hours. The chaplain who came in to have her sign the DNR or the order of care should she become unable to make her own decisions was very adamant about getting her to sign it right away.

My mom was hard of hearing and could not here and understand among all the air blowing in her face and all the noises in the room. I simply ask the chaplain if we could take a look at it and have it turned in at a later time. To that I was informed that I was not allowed to help her and she had to make her own decisions. She did leave the form for us to fill out together but informed us that we didn’t have much time.

As I tried to allow my mom to make her own decisions she did what she naturally thought best by signing herself first as her decision maker followed by her husband (who was also sick at the time and was admitted to the hospital two days later) followed by her oldest son and so on down to myself the baby of the family but the one allowed to visit in the hospital.

Things immediately started to go downhill from there. I was allowed to visit one day but then had to fight a new set of rules for visiting the next day with the threat constantly looming that if she was transferred to ICU she would have no visitors. Every time I left her room in the evening at the end of visiting hours I would come back in the morning to find out that she had gotten worse overnight and that her oxygen levels have to be bumped up.

This was another thing that I was informed by my friend that they would do. I was told that I need to demand that they go through every level of oxygen necessary before trying to ventilate her. And that there were several levels from high flow oxygen to BiPAP to go. So we did make it clear that we wanted every level of oxygen before ventilating which she appeared to be going through quickly, but only at night. Her oxygen levels would maintain a steady level throughout the day that I would be visiting and then be bumped up through the night.

By the time I would visit her again in the morning a doctor would have been in her room informing her that she was not getting better. One particular morning when I came to visit she asked me if she was going to die? I said we are hoping that we can get you better. She said to me that she’s confused because nurses would come in and say she’s doing so much better and then doctors would come in and tell her that she’s not.

After about 5 days of this pattern I reached out to my local church mostly because of the change in visiting hours constantly, I wanted to know if there was a pastor that had a special pass or something as I know pastors visit hospitals often. I was also reaching out for prayer and spiritual help as I was praying the best I knew how and having faith issues myself and how could this be happening?

At that time I was connected to the pastor’s wife in the church who was dedicating a ministry to helping people with Covid to avoid the hospitals. The first thing she said to me was that I need to go in and demand that they take her off of remdesivir. At this point she had already been in the hospital for 5 days and I was informed that she completed the 5-day cycle of that medication.

So then I was told that I should ask that they be treated with an antibiotic for the pneumonia and with ivermectin and hydroxychloroquine. I was also told to get them out of the hospital and do anything I could to get them out. I called the patient advocate line at the hospital who said that I could meet personally with the doctors both my mom’s and my dad’s at this time. I had a meeting with two doctors who said why do you want to remove your parents from the hospital?

I said that for one thing I wanted them to be closer to me as I had been driving an hour back and forth to see them. And second of all I wanted them treated with certain medications. And these medications were being denied by the hospital. They told me that not enough studies had been completed on those medications to deem them safe and effective and that they were against Hospital protocol. I said leave out the controversial ones i.e. the ivermectin and hydroxychloroquine, but please give them azithromycin to treat the pneumonia.

I informed them that I had just gotten through Covid. I had just been ventilated and once I was given azithromycin  I had gotten better. I was told that azithromycin will not touch the Covid infection that Covid is viral and pneumonia is bacterial therefore they would not prescribe an antibiotic until a bacterial infection was present.

And furthermore what worked for me doesn’t work for everybody that we are all different and pretty much that I’m not a doctor. It also was to the point that anytime I asked for something for my mom I was given the excuse that they were so understaffed and that they would see what they could do. The doctors said that that is not true that this particular Hospital had the best staffing throughout the Covid pandemic than any other Hospital.

Because of all of this back and forth with the doctors telling my mom things that she may or may not have heard and not giving her any hope of living I was told to get medical proxy. I went through the procedures that the hospital had in place to get medical proxy. Once that was established, and it was not easy, I told her doctors that I did not want them discussing her condition with her or asking her to sign anything unless I was in the room with her.

We then had inconsistencies with what exactly was being put in the IV. I continue to ask if they could receive monoclonal antibodies. One nurse told me that what she was putting in the IV as we were speaking. When my dad was admitted to the hospital I asked the same for him to which I was told that this Hospital does not even do that. Which made me question then what was the nurse putting in the IV?

I was also told that she had reached a certain point in the emergency room that she was no longer a candidate for monoclonal antibodies but then was told upstairs in her room that she could receive them. I to this point have never determined whether she has received them or not. There were also inconsistencies in the way the BiPAP machine was working.

Once introduced to the BiPAP machine they immediately wanted to cut my visiting hours saying that the BiPAP was just shooting Covid all over the room and that I would just get reinfected. Somehow I managed to convince a nurse to allow me to continue to visit taking on the responsibility of getting sick again. With the BiPAP mask on, my mom was unable to cough and was having to remove it to cough. She was very thirsty and would remove it so that I can help her take a drink, mind you, I was helping her take drinks. Rarely did nurses come in except to check machine numbers or whatever, rarely to care for her.

Once my dad was admitted I was able to go from her room to his room but again getting inconsistencies and various nurses wanting to change the rules saying that I would transfer the infection from one room to the other even though they were both infected. It was a full and exhausting week of driving an hour back and forth going from one room to the other trying to muster up hope in each parent and fighting with doctors and nurses and having continuous changing rules, being pressured day by day to discuss their end of life plans or whether they would like to be resuscitated.

I kept wondering why it was that the oxygen levels would stay consistent during the day and then suddenly drop in the evening hours. I kept asking the nurses why is this happening at night when I leave. Someone said maybe she’s having anxiety when you’re gone. I would then ask to stay so that she would be okay to which they lengthened my visiting hours but I still had to leave overnight and she would still deteriorate overnight.

The BiPAP machine apparently has different rules for nurses than they have for the respiratory therapists as my mom was not allowed to eat once put on the BiPAP machine but after 3 days of not eating a different nurse came on shift and started looking at the menu with her and ordering food. I asked why now is she suddenly allowed to eat to which I was told that she can eat while on the BiPAP.

Later on in that same evening a respiratory therapist came in and I informed her what I was told from the day nurse that she was allowed to eat to which I was told that is absolutely not true it was a choking hazard to take the mask off take a bite and put the mask back on. This respiratory therapist said she can have the BiPAP removed long enough to eat a meal and then have it replaced to help her with her breathing and oxygen levels.

It was too late by this time so I asked that that be done the following morning. When I returned the following morning there was a tray of food on her table on the other side of the room from her. She had not had a BiPAP mask removed to eat she was slumped down in the bed her call light was somewhere above her head it was nowhere near where she could reach it.

I called the nurses in and asked them if she was supposed to stand up and go get that food and if she was to somehow find that call button and why hadn’t the BiPAP mask been removed as we had discussed the previous evening. The nurses began straightening up her bed and actually caring for her and then said that they would call a respiratory therapist down to her room to talk to me. But that they couldn’t guarantee anything because they were so short-handed and there were a few respiratory therapists on staff.

A different respiratory therapist  guy who seemed disinterested in his job did come and said that yes she can have the mask removed so that she could eat and have it placed back on for her oxygen needs but acted very disgruntled that I would request that that happened. He took the mask off I helped my mom to eat breakfast I sat there with my mom until 5:00 p.m.

Occasionally a nurse would enter the room to check the numbers on the machines but never would attend to her physically never would check to see if she needed new bedding or rolled over or anything else and no one ever replaced that BiPAP mask during that day. Her oxygen levels were staying in the 80s.

When the doctor entered that evening he looked at her levels and said well it’s not what we would hope we would like you to be in the 90s but as long as you’re hanging in there we will accept it. He then asked my mom if she was hanging in there and she nodded so the doctor did not replace the BiPAP at that time.

I asked the doctor why no one had been in that day to care for her or replace the BiPAP as discussed. In reply  I was told that it was very inconsiderate of me to suggest that no one is caring for my mom when that is all they are doing 24/7. And again informed that I am not a doctor. And again informed that she should have been vaccinated.

Well as the pattern goes again my mom’s condition supposedly deteriorated overnight she had to be placed back on bi pap she was no longer eating supposedly she had a feeding tube but I don’t know. I left her phone recording in the room overnight when they informed me that they might have to move her to ICU they just never know when but when her condition gets to the point that she needs to be moved. I requested that she not be moved until I was informed first and then till I was there with her to which I was told that her condition could require ICU at any moment and they would not have time to inform anyone.

Well listening to the recording on her phone I heard nurses in her room packing up her things getting ready to move her to ICU when another nurse came in and said cancel that we’re not moving her at this time and then had a little discussion about how things were changing all the time and the nurse that was packing her up said she thought my mom was getting better and was surprised  that they were moving her to ICU in the first place. So that afforded me another day with my mom.

So by Sunday morning, a week after my mom had been admitted I was in the parking lot getting ready to go in to visit I had gotten a call from my dad’s Doctor who wanted to know if we had had time to discuss with my dad whether he would choose to be intubated or if he would just rather be “made comfortable” and consider end of life treatment. By this time I had been going back and forth between a doctor who was willing to treat them and the hospital doctors not releasing him and we had come up with a plan to have him go to hospice which is what I told the doctor was our plan to which she said he would have to be moved to hospice at that hospital.

This part is my dad’s story but at the moment I discussed having him removed to hospice his condition immediately deteriorated and supposedly he needed to be intubated immediately or moved to hospice at the hospital. I was in the parking lot talking on the phone as I had just arrived and was about to enter the hospital when I got the call so I immediately ran upstairs to be with my dad and was trying to get family together to see him before going off to ICU as we had chosen to go ahead and intubate and pull out any life-saving measures at this point.

Once my dad was rolled out of his room and headed to ICU I walked out of the room distraught and immediately walked into my Mom’s doctor who appeared to be waiting outside the room to tell me that she had signed a DNR at that time. So he had been in her room while I was in a moment of crisis with my dad and tricked her into signing a DNR. I immediately ran to my mom’s room and talked with her and asked her if she did indeed sign the DNR she told me she was so confused she did not know what to do I had the discussion with her again do you want to live to which she said yes and I asked her if she wanted to be intubated if that was the last resort to keeping her alive and she said yes.

I went back to the doctor who said she signed a DNR and I said she has chosen to take any measure to save her life. The doctor immediately ran back to her room only I was in the room with him this time and I was able to talk in her ear so that she could hear as she could not understand what the doctor was saying. Once she said that she wanted to live  the doctor said she needed to be intubated right away too.

So once again I was scrambling to get family there who was not able to get there in time for my dad but once they all got there for my mom, the rules changed again. None of them were allowed to come up to see her except for one brother who had been there as the one visitor for my dad previously. So there we were, we sent both parents off to ICU and sat in the lobby and cried.

I went home, once I reached my house I received a call from my Mom’s doctor strangely telling me that HE intubated my dad and that they lost my dad to cardiac arrest with a pause to let that sink in and then said oh but we got him back. And we told your mom. Your mom has improved slightly so she does not need to be intubated at this time but we will keep her in ICU. I was livid.

Why have they told my mom? And did my mom hear everything clearly? Why did they not speak to the family before telling my mom that my dad had possibly died? I went back to the hospital the next day and was not allowed to visit in ICU I called the director of the hospital to contest this who had me speak to the nurses on the ICU floor who I spoke with for over an hour and still would not allow me to visit my mom.

I then had an hour long discussion with my Mom’s doctor to which I asked again why she was being denied medicines that would possibly help why we would not even try when all the doctors could tell me was that they were not proven to help a certain subgroup of people. I again asked to have her removed to the care of a doctor who would try these medications that have been proven to work on his patients. I then got in an unprofessional discussion with the doctor that I could have had with anyone on Facebook about whether the doctor really had no deaths in the last 3 years of Covid or not or how many patients he had that he could make that claim etc.

I left that day not able to visit my mom the next day I just didn’t even go back to the hospital because I didn’t figure they would let me in. I was then called in the middle of the night about my dad’s condition and whether we wanted to basically pull the plug. I said I am having a difficult time relaying this information to the family I do not know all the medical terms could we please request a family meeting with the doctors so that we could determine what was best to do we also had a pastor come with us to this meeting as we are a faith-based family who does not believe it is in our hands to end a life or not.

It wasn’t until after this meeting that they allowed me back in the room with my mom again to discuss whether she had actually signed a DNR or if the doctor had coerced her into signing it as apparently once again she had a DNR. When I talked to my mom about her will to live at that time she said that being intubated didn’t help my dad as she thought he was dead as I had feared when the doctor said that they told her.

I don’t think she heard them correctly. I don’t think that because of the look that she gave me when I told her that he was still hanging on to life. I was not allowed to visit her for 2 days after they intubated my dad and after they told her that it didn’t go well and with her possibly thinking for these two days that he was dead and I don’t know what kind of care she was receiving during those two days. I then left the hospital after again convincing her to be intubated if she needed to be, I went home.

I had been on Facebook and seen that my mom was posting things and communicating with people when I got the call that it was time to intubate my mom. I said but she appears to be doing okay she’s communicating with people on Facebook how could she not be breathing well enough that she needs to be intubated? I asked if I could speak to her to which they said I could text her so I immediately went to my messenger which is where I communicated with her most and was trying to communicate with her.

My last words to her was Mom they’re going to have you sleep now so that you can “rest your lungs” to which I got no response so I said mom you are so strong. To which I got no response I honestly do not know if she saw those texts. I was called again an hour or so after attempting to intubate and told that she was not going to make it they kept her “breathing” until I made the hour drive back to the hospital and got family together to see her.

She passed shortly after we all got to the hospital. The way that she was presented to us looked like she had been slaughtered she was all twisted up in the bed barely covered. It was horrible it was a horrible death.