My siblings and I are now sitting shiva for mom. Mom survived COVID-19 but died of hopelessness, all alone. We are not bitter about it and we’re not here to point fingers at anyone. We believe that mom’s passing was the will of God and we fully accept it. We would like to publicize this letter simply to let the world know what’s going on in hospitals in the hopes that it brings about change, fast, so that more needless deaths can be avoided.
Mom was 62 and had underlying medical issues. She fought like a tiger and survived many medical battles. She was full of life and full of hope. She was there for others and was a source of hope to many.
Despite being quarantined for several weeks, mom woke up with a fever on Friday, March 27, and was advised by her doctor to report immediately to the nearest emergency room. Despite mom being very forlorn due to the chaos around her in the hospital, we were still able to communicate with her via her cellphone. She was very weak, but we stayed in touch. By Monday, March 30, her breathing regressed and she needed to be intubated and placed on a ventilator. She stayed on the ventilator for 18 long days, and finally on April 16 we received the great news that she was removed from the ventilator.
Mom continued her progress and after a few days she was able to communicate with us verbally. Not more than a word or two, but we heard her voice, and more importantly she heard ours. We had sent the hospital a device to be clipped on her bed which would allow us to see mom the whole time and talk to her.
The plan was a good one. We would continue being with mom virtually through the device and keep on injecting her with care and hope, while we would stay in touch with the nurses (and bring them chocolate) on a daily basis.
But the plan didn’t work out.
The device was on the hospital’s Guest WiFi which kept on refreshing and kicking off devices, and we were advised that we cannot connect to the hospital’s more stable internal WiFi. We had lost contact with mom. Then mom stepped off the ICU and now only had a nurse in her room once every hour or two! We were then advised that mom is no longer communicating verbally but she still communicates with her eyes. Mom was regressing.
On Wednesday, April 22, I spoke with the hospital social worker and said quite frankly that if this keeps up mom will not make it. While based on the charts, mom was “progressing”, I knew that given her underlying medical issues her secret to survival was the joy of her family (3 children, 18 grandchildren, and 1 great grandchild). Without being in touch with her family, hopelessness would set in which would aggravate her underlying medical issues. I pleaded with the social worker to give mom the therapies she needs in order for the NG tube to be removed so that we could transfer her to a high care nursing facility or even home with a nursing aide. I pleaded with the nurses to reconnect the device so that we could have some kind of human connection with mom. I sent a text to the hospital liaison saying “Compassion please. My mother is laying like rag and a nurse goes in only every hour and a half.”
Later that night I started hitting the redial button to the nurses’ station. I had sent in a MiFi card (again, with chocolate) and begged them to reconnect the device so that I can talk to mom. It took many attempts. At one point one nurse said, “please call back later, it’s a zoo here.” At another point the nurse said that they are still doing their rounds giving out medication. This was at 1 am and they came on shift at 7 pm. Finally, at 1:15 am the nurse called me saying that she connected the device.
I saw mom but for one second and then mom’s device tilted away, and I just saw the bed. Before I could ask the nurse to adjust it, the nurse was gone. I was happy to be able to talk to mom. “Mommy, I hope you can hear me,” I said, “we’re here for you and we’re trying the best we can to care for you. We’re in touch with the nurses and we’re working on a plan to get you to a place where we can take better care of you.” Then I sang mom a lullaby, and only then went to sleep.
An hour later, I saw the hospital number on my caller ID again. This time the doctor on the other side of the phone informed me that mom had just passed away.
In the days after mom was removed from the ventilator we were in touch with doctors, nurses, hospitalists, social workers, chaplains and liaisons. We were pleading with them that survival could not be expected just by pumping meds. The medical literature if full of hard evidence that hopefulness and emotional wellbeing plays as large a role as medical interventions. Many cared, others offered to do something, some made some efforts, but the overall situation remained the same. My family was shocked with the news considering mom’s recent progress, but I was not shocked.
I’m not blaming I’m just beseeching policy makers to please bring about change, fast. I ask that family members who had tested positive for COVID-19 and are 14 days post symptoms should be allowed to stay with their loved one. I likewise ask that hospitals that can’t provide humane care should close their doors to new patients who can be sent to less busy hospitals (or to the Javits hospital or to the military hospital ship). It just makes sense.
True, COVID-19 caught us by surprise, but right now we no longer have any excuses to continue with medieval practices. If inmates on death row are given rights, so should my mom and others like her.
Licensed Clinical Social Worker
Mom’s name: Lea Neuman. Hospital: Good Samaritan Hospital. Room: Loria 305. Date of death: April 23.