Reading your story made me feel like I was reliving the hospital experience we had with my dad at about the same time - October, 2021 here in Colorado. He and my mom were 79 years old at the time and came down with covid. My father is a retired physician and chose, the same as most in our family, not to get vaccinated. My mom did not have very severe symptoms despite having a-fib, but my dad has Parkinson's and I believe that the severe fatigue that came with the covid caused him to forget to take his Parkinson's medication in a timely manner and he became weak and less responsive. I am a veterinarian and 2 of my sisters are nurses so we were monitoring his O2 saturation at home, as well as helping to care for him and using early treatment protocols.
At day 12 we took him to the ER and he was started on 2 liters of oxygen and came home. They told us at that time that he could not have visitors in the hospital until he was 14 days post positive test, but my sister had ridden in the ambulance with him and stayed with him in the ER. He did ok at home for a couple of days, but his oxygen needs went up to 6-8 liters, so on day 16 post positive test we had to take him back to the ER. We figured this would be fine because he was over 14 days out and one of us would be able to stay with him at all times. After we had been there with him for 24 hours, assuming that because we were past day 14 he would be able to have visitors, the charge nurse came and said that she had spoken with infectious disease and that he could not have visitors until 21 days post positive test. I told her that was not what we had been told previously and I asked for infectious disease to come so I could speak with them. That was at 3 in the afternoon, and they never came. At 2:30 the next morning, they said they had a bed on a floor available for him and needed to move him right away, but I would not be able to go to the floor with him. At this point, he could barely speak (I could understand him, but few others could), and he was unable to feed himself. I was ordering his food and feeding him. He couldn't even lift his legs in bed. 2 weeks earlier he had hiked 3 miles, but no one would have known that if I hadn't kept telling them. They would have just assumed that he was always in a semi-responsive state. I told the nurse that I would not let him go to the floor by himself and asked to speak with a patient advocate. She sneered at me that advocates only work 9-5 and I should have asked for that during those hours. So, I asked for who would fill that role in the middle of the night. She said the supervisor was with a dying patient so I told her I would wait until she was available. When she came, I asked to see a copy of the hospital's visitation policy, because I had found one on their website that said that exemptions would be made for patients with disabilities, perfectly describing my father at that time. She said she did not have a copy of it and would have to find one. I showed her the one on the website and she said that just because it was on the website didn't mean it was the policy they were following. I continued to sit next to my father, never raised my voice, but kept asking questions which annoyed them. Who was going to feed him if I wasn't with him, and who was going to help communicate for him? They could not give me an answer. The supervisor said she was going to get the visitation policy and came back with a security guard who demanded that I leave the hospital. I am about 115 pounds and like I said, never raised my voice or threatened anyone. Just kept asking questions. I told them I understood my dad's condition and knew he needed someone to advocate for him in the hospital because he couldn't currently advocate for himself. She told me I didn't know anything because I was "a doctor for animals", and that I needed to leave so they could take my father upstairs to get him the care he needed. I told her I was staying with him to make sure he got the care he needed. Then I asked to speak to a physician in the ER. They reluctantly brought one and initially he was rude and annoyed. He also had another security guard with him. After we spoke for a while, he realized that I did know what I was talking about and said he understood why I was asking to stay with my father, but he couldn't make that decision. They would have to contact someone in administration. So, at 4:00 in the morning, I had a conversation on the phone with the Chief Medical Officer who finally ok'd me and one of my nurse sisters to take turns staying with my father while he was in the hospital. He asked if I was vaccinated and when I said no, he said, well, not that it prevents transmission anyway. Hmmm. I told him I understood that I could likely get covid, but given the statistics, I was not worried about it.
My dad was in the hospital for a week, and we never left his side, wearing full PPE the entire time. I didn't wear a mask unless hospital personnel were in the room, and he felt badly when he would cough in my face. I told him it was fine and that I loved him. I ordered and fed him every meal for the first 5 days, and then I helped him relearn how to hold silverware and over several days he was able to start feeding himself more and more. After a week in the hospital, he went to rehab for 3 weeks and is now back home with my mom. I feel like the only reason our story ended up differently than Grace's, is because we have medical background in our family and knew what we needed to fight for and what limits needed to be pushed. Most people don't know that, and you shouldn't have to have a medical degree to keep your loved ones safe in the hospital. We are in an unprecedented time where medicine is no longer about learning through discussion, experiences, trial and error and sometimes disagreement. It is now a recipe to be followed to bring in the most money for the health care industry regardless of what happens to patients. I agree with you that care from the nurses on the floor was wonderful. It was the charge nurses and others who are higher up who were insulting and berating, and I know that most family members just give up and let the hospital take their loved ones away because they don't know that it could be different. I contacted an attorney about our experience, and he said that since my dad didn't die, there really was no case. It sounds like you are being told that even though Grace did die, you still don't have a case. I literally cannot believe this is happening in our country.
I will continue to try and follow your journey but would love to help out in any way I can. I filed a grievance with the hospital, and now am filing with the Joint Commission. I don't know if it will have any effect, but I don't know what else to do. None of this is ok. My father would have starved to death in the hospital if I hadn't stayed with him, and I know others that have starved to death after a month in ICU, not eating and never being given IV nutrition. The fact that Grace was eating, and they put in a feeding tube when you were not there is reprehensible to me. Also, the fact that they had her as DNR when you had never signed anything makes me wonder if at some point when you weren't there, they asked her. The way they asked my dad if he wanted to be resuscitated was, "if you stop breathing and your heart stops, do you want us to try and get your heart beating again. We may need to break ribs and possibly open your chest". Even though my dad wasn't very responsive, he softly mumbled "yes". If the doctors described it that way to Grace, she may have said that she wouldn't want them to break her ribs. I don't know, but that was just a thought I had as I was listening to your story. Thank you so much for sharing what happened to you and allowing others to share their experiences as well. Know that you are not alone, and that what happened to Grace in the hospital was not what should have happened.