Dad.

My 96 year old father, Charles George Stephanos, is lying in a VA hospital in the space between life and death, kept alive per order of his wife Louise refusing hospice or a DNR order or even the most effective pain killing medications. He’s had dementia for years, in fact the last time we spoke, he thought I was his brother and my wife was Hillary Clinton. Louise refused to allow my brothers and I to visit him after he was admitted to the VA hospital, claiming that he didn’t want to see us, and that our presence upset him to the point of endangering his health. I reflected on this one time when I snuck in to see him and he brightened as though waking from a dream, smiled and said “I can’t believe you’re here! I’m so happy!” After years of having to sneak around VA hospitals to see him, we finally found a sympathetic staff at the MICU where he’s been stored since August.

He’s on a ventilator, having had a tracheotomy after being intubated for a tortuous three weeks. Two weeks ago he had another stroke (an earlier one in August was the reason they moved him to where he is now), and pneumonia. He’s losing parts of his body due to infections.

Worst of all, he has fist-sized wounds that are index finger deep from infected bedsores on his rear end. They are “tunneling” wounds that only get deeper, and the nurses have to turn him and repack the dressings every few hours. Louise requested that he not be given pain medication that contains opioids, insisting on medications no stronger than extra strength Tylenol for the unimaginable pain he’s suffering. When I see him, he’s usually either drifting in a thick haze, grimacing in pain, or looking blankly around the room. All of this is to underscore that there is no quality of life or the opportunity for a dignified exit from a tormented existence for a man who was smart, talented, funny, and most of all, kind.

I visit my father several times per week and each time I approach the building, I find myself hoping he’s finally died peacefully and that his suffering will be over. I play him his favorite Greek song—Samiotisa, say the Lord’s prayer a few times, then just tell him about my day. I wish I could have a reasonable conversation with Louise and tell her that she has the chance to be the hero my father needs in this moment, the hero she claims she believes Jesus to be and give him the gift of a merciful, dignified end of life. But that conversation will never happen. After months of texting her to see how my father was doing (she agreed to communicate through text), she disconnected the phone. I’m sure that if I went to her house—the house I lived in as a teen—she’d call the police. At one point when my brother brought his family to see my father in the hospital, she became furious and told him she would not tell us when he dies. She hasn’t visited him once since he’s been in this MICU since August. The doctors have asked her to at least FaceTime so that she can see the condition my father is in, but she refuses. When asked if she could get someone to drive her to visit, she said that she has cancer, and so do all of her daughters. I know the various benefits checks she receives in his name would more than cover the cost of gas for the 50 mile trip.

It doesn’t feel good to draw him in such a vulnerable state, but I feel compelled to create a record of what’s being done to him. A few days ago, he was as present as I’ve seen him since this latest incident started. My wife asked him if he was Charles Stephanos, and he gave a short, quick nod. His eyes seemed to track weakly, and there are hints of light within. I don’t mistake those glimmers of light for the sunrise though. Instead, it feels like seeing the last glimpses of a man briefly surfacing between waves before being swallowed into the deep dark sea of eternity. The medical assistance he’s being given is mercilessly suspending him just below the surface, and the one person who can deliver mercy —his wife Louise, with her health care proxy authority—hasn’t even taken the time to visit and witness my father’s suffering.