My story is not unique. Given the current state of the world, hearing the story about my mother dying from COVID-19 is sadly just one of many. My mother, Ellie Hughes, was my best friend, however, so I want to make sure her story gets told. I am 45 years old, and I have never lived farther than 7 miles from her. She tucked our child in every night until he was 4 years old, I spoke to her every night, we had dinner with her at least once a week for the last 20 years, we spent almost every family vacation with her, and she was there for every milestone in my life. On April 21 of this year, we lost her, I lost her… and it shouldn’t have happened the way it did. That is why I am writing this, because I need people to know how much she was put through before she left us.
On February 17, after a week of feeling ill, my husband and I took my mom to the emergency room at Holy Cross Hospital in Silver Spring, MD. They admitted her, diagnosing her with double Pneumonia, Congestive Heart Failure, Sepsis, Respiratory Distress, and a myriad of other things. This was very early in the Pandemic, and because of that they were unable or unwilling to test her for COVID. The hospital told me that because she had not been out of the country, they would not test her. As most people do, I assumed they knew what they were doing so I sat beside her and just kept her company. I was terrified, but I trusted the medical professionals. Before I tell the rest of the story, I need to make it clear that my mother was not a 70 year old that needed care. She lived alone, she worked full time as an apartment manager, she drove herself everywhere, and she needed no help with daily living. That is where the tragedy of this starts really, with how they left her weak and made no effort to listen when I told them that they needed to do more. The day after they admitted her, they put her on a ventilator. She stayed on the ventilator in a medically induced coma for almost three weeks. When they were finally able to wean her off the vent, I was so excited to see her. At this point, they had still not started restricting visitors to the hospital, and I was there every day beside her for as long as I could be. She was weak, so weak. She couldn’t lift her arms, couldn’t move her feet, she needed help with everything. I fed her, and brushed her hair for her. She was speaking, but only in a whisper because of the lengthy ventilation, so I was her voice when she needed to be changed or was in pain. My mother’s employer provided her primary health insurance, which was Kaiser Permanente, so she was being treated in the ICU by Holy Cross physicians that were overseen by doctors from Kaiser. Therapy started, both PT and OT, and I tried to explain to them who she was before. They didn’t listen, and they really didn’t try. We were into March at this point, and my Mom still couldn’t stand up, pull herself into a sitting position, lift a fork, go to the bathroom, put her own glasses on, or even push the call button when she needed help. She was hallucinating, and more than a little confused. I got calls from Nurses asking me to calm her down because she was working herself up so much, and I did it. Then I cried for hours. This wasn’t my Mom, and no matter how hard I tried to tell them she needed help, they continued to support her minimally. Her agitation improved a little once she was out of the ICU and in a room, but the care she received decreased. She still couldn’t push the call button on her own, and she struggled with her phone, so I would get dozens of texts that simply said “call” when she couldn’t get anyone’s attention. Sometimes it was because she needed her bed changed, and had been sitting in her own mess for hours. Sometimes it was because she was in pain and they hadn’t taken her meds on time. Sometimes it was because she was hungry or thirsty but couldn’t open the packages of food they brought her. What I witnessed as far as her care, when it came to treating her with dignity, was absolutely awful. She was slowly getting more and more depressed, she had lost 40 pounds, and she was scared. Scared to try, scared of what was happening, and so afraid she was not going to get any closer to who she used to be. The doctors at the hospital decided that she was medically stable, so we had to choose a Nursing/Rehab facility to send her to. I was hopeful, I shouldn’t have been.
Her first night at ManorCare in Wheaton, they dropped her. Her nurse that night called me to tell me that when they tried to weigh her, they tried to let her stand without support… even though she couldn’t… and she fell. There was no injury, and they were right next to her when it happened, but it was still not a good start. When the nurse and I disconnected, I realized that I had not asked for the phone number to my Mom’s room, so I tried to call back. There was no answer, for over an hour. It was almost midnight, but my husband and I drove up to the facility so that we could check on her and get the information we needed. We spoke to Mom, she seemed ok… if a little confused about us standing over her in the middle of the night. We spoke to the Nurse and got the phone number for her room and the Nurses station, and were on our way home. The staff at the rehab sounded like they had a plan, it really sounded like they were going to help. I believed them. She would have PT and OT every day, there was a gym where she could start to get her strength back, and everyone working with her seemed so attentive when we were visiting. It didn’t take long to figure out that they were only attentive while we were there. The therapy she so desperately needed was regularly not done, sometimes because she sent them away out of fear, and sometimes because if they only had one person available they couldn’t work with her because she needed two people to support her. I was still getting texts from her several times a day because she needed help and they weren’t responding to her. The call button at the rehab was easier for her, so she was able to use it… they just didn’t answer. A week or so into her stay there, she started having chest pains, so they sent her back to the hospital. As soon as I got to her room at the hospital I could tell something wasn’t right. She was complaining of pain in her left arm, and had been for a while at that point. A nurse came in while I was there to do an EKG, the doctor that looked at it said she looked fine, and they left. The pain got worse, I called the nurse again, they sent for a cardiology consult, and we waited. And waited. I had to leave, because I needed to be home for our son, so I told my Mom to call me when she saw the doctor. The next call I received was almost two hours later, from a Cardiologist telling me she was having a heart attack (and had been while I was there) and they were taking her to place a stent in her heart. After the procedure, she was sent back to the ICU for observation. They had been able to place a stent at one of the blockages, but not the other, which essentially left a portion of her heart dead. After she was “stabilized”, they sent her back to the rehab facility. My mother still could not support her own weight, had not stood up at all, and needed to be pulled into a sitting position. She had regained some fine motor control, so she was better able to feed herself and perform small tasks, but still not as well as before all of this started. She was as depressed as I had ever seen her, and absolutely terrified of getting hurt if she tried to do anything herself. I spoke to the doctor overseeing her care about some kind of psychological support, and I was told that Kaiser doesn’t cover inpatient therapy of any kind so the most they could do was medicate her. I asked, a number of times, how they expected her to be an outpatient at any point if they were unwilling to provide her the mental health care she needed to get there. They never had an answer.
It was around this time that they stopped visitors coming to the facility. We had been taking her food daily, because she was hoping for something that just tasted better than what they provided, and we had to stop that as well. We spoke every day, multiple times a day, and although she was very depressed and still physically unable to care for herself, she sounded like my Mom. Not seeing her family was taking a toll on her, but there was nothing we could do. The last time I actually saw my mother alive was through the window of her room at the rehab… and I will never be ok with that.
In April, the staff at the rehab started telling me that they felt she could make no more progress with them so they would be discharging her home with Home Health visits a few times a week. Let me be clear here, she still could not walk or stand. She could not perform tasks of daily living, and they were sending her home with minimal care, while also stating in her records that she needed 24 hour monitoring. This made no sense to me, and I fought it, but that only bought her an extra week. A week of no effort on their part to help get her stronger or more prepared. Ultimately, a pointless week. The day before she was supposed to be discharged, she began having chest pains again. I received a call at 11pm from her that an ambulance was there to take her to the hospital. This was April 12th, if I recall correctly. She spent most of two days in the ER at Holy Cross waiting for a room, and I couldn’t go see her because of the restrictions. She was miserable, and terrified. They finally got her into a room on the Kaiser floor, where they started adjusting her medications to try to regulate her heart rate. The call from the doctor that I received on April 15 was quite possibly the most confusing call I have ever received. He was calling to let me know that she was stable and they would be sending her home, but as a precaution they had performed a COVID test and she had tested positive. They were planning to send my bedridden, immobile mother… who was recovering still from Pneumonia, CHF, and Sepsis… home. None of the home health agencies would send anyone to help her because she was positive, and I am not strong enough to provide her the help she needed. They told me she could have telehealth visits from home, but she wouldn’t have been able to use a computer or the phone well enough for that to be a viable option. The rehab, where she caught it, wouldn’t take her back because they had determined that she had reached her “benchmark”. My husband and I knew that it wasn’t safe to send her home, that because of all of the health conditions she was bound to be affected severely by the virus, and I tried to convince the hospital. Her insurance wouldn’t cover a further stay, so I was left with the appeal process. I filed appeals to both Kaiser and Medicare on the night of the 15th, they were both denied on the morning of April 17th. I reached out to WTOP, channel 9 news, and Senator Will Smith from Maryland to try to get help keeping her safe. They all helped as much as they could, but ultimately the decision to discharge her stood because the hospital spokespeople said that some patients don’t need hospitalization to recover. I agree with the statement, but I could not understand how someone with her recent history could fall into that category. I had, in fact, been forced to bring her recent history to their attention when I spoke to her different doctors, making it clear that they had not paid any attention to what she had been through during her previous stays. Despite all of my efforts, she was to be sent home on April 19th.
My mother and I, with the help of my husband, decided that the safest course of action was for her to tell the hospital that she would take financial responsibility for the remainder of her stay in the hospital. The hope was that she could safely make it past the quarantine period, and then come home where I would stay with her and the visits from healthcare providers could begin. This was a difficult decision, as my mother did not have the means to pay for what would be exorbitant hospital bills, but we knew… absolutely knew… that she could not come home. That morning, while a caseworker stood in the hall outside her room with the paper she needed to sign stating that she would be responsible for all charges past noon that day, my mother suffered a cardiac event that needed to be treated with a shock. It is sad that I can say we were lucky that this happened, but as a result of the heart condition, she was no longer medically stable so she had to stay in the hospital and remain covered by her insurance. Nobody should ever feel relief when their parent is suffering, but that is where I found myself. It was at this point that the symptoms of COVID really started to show themselves. She was having trouble breathing, mild at first but it continued to get more and more difficult. They put her on oxygen via cannula first, and started laying her on her stomach to try to help. The doctor overseeing her care at this time chose to put her on Hydroxychloroquine, despite the fact that there had already been studies that indicated that it caused heart arrhythmias… something she was already having issues with. At around 4pm on April 21, I received a call from the doctor letting me know that they were sending her back to the ICU because her needs had gone beyond what they were able to provide in the room on the 4th floor. My mother hadn’t been told yet, so I called her so that I could be on the phone with her when they told her. At this point, she was wearing a mask for her oxygen because the cannula wasn’t providing enough for her. She was scared, she told me she was scared. I told her that I loved her, four times, and I told her through tears to keep fighting. At 8pm, my phone rang. Four hours after they decided to move her to the ICU, they had finally gone to transfer her. Four hours of not getting enough oxygen. Four hours of her already weak heart working overtime to pump oxygenated blood to her organs so that she could live. Four hours of being alone, and terrified. Her heart stopped beating when they went to transfer her, and that 8pm phone call I received was telling me that they were currently doing chest compressions to try to restart it. At 8:30 pm, they called to tell me they couldn’t. My mother died. She died, alone and afraid. She died in a room on the 4th floor of Holy Cross, thinking that she would be ok once they got her to the ICU. She died after months of suffering, feeling ignored and unheard.She died still believing that the doctors would do what was best for her. She died because all anybody in charge cared about was where the money would come from. My mother was not a dollar sign, or a statistic. She mattered. My mother mattered more than I will ever be able to convey in writing, or conversation. Everyone that met her, remembered her. Most loved her.
We held her funeral on April 25, 2020. It was not the way it should have been. None of our extended family could attend, because they couldn’t travel. My Uncle, her brother, couldn’t come. There were only 11 people at her funeral. Her presence in this world was huge, she took up a whole room with her personality and her laugh… and I had to send her off with nothing close to what she deserved. I played the songs she would have wanted, I wore a dress that she bought me at Disney World that she gave me a hard time about never wearing, I spoke even though I didn’t think I would get through it. I gave her what I could, but it will never be enough. It wasn’t just the virus that took my mother from me, it was the way her case was mishandled from the start. It took her from her grandsons high school graduation in 2022, it took her from his 16th birthday this year, it took her from everything. She will never go shopping with me on Sunday again. I will never cook her dinner. I will never go to Disney or the beach with her. I will never be able to call her when I am sad, or feeling alone, or when I just need my Mom. My mother didn’t give up, they gave up on her. That will never be ok, I will never be ok. I want someone to admit they messed it up, I want someone to apologize not because it’s expected, but because they know it was handled badly. I just want to know that someone in that hospital actually cared about the person she was, and not just how good her insurance was. More than all of that, I just want to hold her and tell her I love her.
Thank you for reading this. I need her story to be told, I need people to see what can happen. She would want me to do what I could to make sure this doesn’t happen to anyone else. Speaking up for her didn’t save her life, but maybe sharing the story can help save someone else’s. Something needs to change. I want her death to make a difference, the way her life did.