Monday came with no improvement and my father was taken to the Emergency Room via ambulance. It was a rush of fear that went through me as I followed the ambulance to the hospital.
By this time my father’s condition was pretty bad. He was mostly unresponsive with eyes closed and mouth open. His cough was due to aspirating pneumonia, but after being suctioned at the E.R., the gurgling was mostly gone. The hours were long and cold as we waited, hoping to get some news on what was happening and what could be done.
This is when things really began to get surreal.
The doctors came to us with dire news. “Send him home for comfort care, so he can pass in peace” was the suggested action, although there was “no pressure” in making our decision to treat or not. This decision was not easy to make as the attending physician said that he couldn’t determine what was wrong based on my father’s symptoms, lab work, and scans. You read right, “We don’t know what’s gong on, so send him home to die” was what we heard.
We decided to treat as our belief was that my father was able to get stable with the right care. They gave him IV fluids and antibiotic. Slowly my father began to regain some responsiveness. He began to move a little, folding his hands across his sternum, and touching his mustache in his familiar way.
I stayed with him throughout the night, until he was admitted into a room the next morning.
For the next two days my father’s condition improved. He talked more, recognized people, made requests, and asked questions. His personality began to show again, and his vitals began to improve. He still wasn’t strong enough to get out of bed, or sit up for long on his own, but once again, we were hopeful that things would continue to improve for him.
The only thing that wasn’t improving was his inability to swallow. He didn’t pass a swallow test, but the speech therapist said she would try another test when his strength improved.
Up to this point, the attending physicians inquired on our decision to keep treating or begin comfort care. In the spirit of informed decisions, we decided to meet with the palliative doctor to better understand what this option meant.
The information she provided was grim. Worst case scenario seemed to be all she could give us. Which makes sense since that is her job. But we weren’t ready for death yet. Not with my father’s condition improving by the hour.
Options to treat were also reviewed with the palliative and attending physicians. The treatment options were more invasive, as they included feeding tubes and dialysis. Then there was the issue of dementia.
Even with my father’s improvement, and even with invasive treatments, my father’s dementia would still be present and progressing. The degree to which he could improve with treatment was unknown, but what was known was that dementia wasn’t going anywhere and would only get worse.
Although there was no rush, we felt pressured. It was an implied pressure in the urgent tone used by nurses and doctor. “He is not going to improve, he will only get worse, let him go” was what I felt.
I became angry and frustrated at the lack of possibility in the hospital staff. They were treating my father as if he came in with a toe tag and death certificate and had no idea of what he was like weeks before being admitted. They met an 84 year old man with a dementia diagnosis, and saw a dead man. I saw my father who was strong and a fighter, and this discrepancy between myself and the doctors felt powerless and infuriating. The doctors would say I was in denial.