My Frustration with Barry’s Death

The latest edition of Tricycle magazine has an article entitled “A Good Enough Death” that is really well-written. It shares the story of a guy with cancer that is cared for by his sisters and an ex-girlfriend.

The difference between this guy’s caretakers and myself was that I did not know I was watching the dying process. I was watching every sign and symptom and taking each and every occurrence as something I would have to deal with in the long-term. I did not understand the significance of what I was witnessing.

Nine days before Barry died, I had taken him to the doctor;s office. His behavior had changed radically in the previous month. I asked the physician’s assistant, “When do I call hospice?” She poo-pooed my question with, “That could be month’s from now.” She then enrolled Barry in a program for people that don’t qualify for hospice. I believed her and took her at her word.

He stopped eating that weekend. He didn’t have an extra ounce of fat on him, but I still thought he could live another couple of weeks. After the weekend, on Monday, I called the program and asked for someone to come out for an evaluation. They said they could send someone on Wednesday. He qualified for hospice on Wednesday, we got him onto hospice Thursday, and he was dead Friday.

The day he died, I was giving him morphine every hour. I called the hospice nurse because the home care worker said I needed to (due to the mottling on his feet) and because there was no way the morphine would last all weekend with me dosing him every hour. I needed a greater supply than the teeny container I had been given. The hospice nurse arrived and declared him dead within one minute of arrival. I may have given that last dose to a corpse.

Before the nurse arrived, I was wondering how and when to put him into a nursing home and how I would handle all the mental and physical breakdown I was witnessing. I didn’t think he would last six months, but I assumed he would survive the weekend.

I am so glad I told him I loved him and held his hand before the hospice nurse arrived. I even heard the death rattle and wondered if that’s what it was.

I was so clueless.

I was there for every little detail of Barry’s death, comprehending nothing. I did not understand the significance of anything I was witnessing. I don’t know if I was  fully present like I could have been.

The frustration comes from feeling misled. I was believing people that understood no more than I did, but spoke with the voice of authority. I accepted their assertions because I knew no better.

Being present is not a substitute for understanding what is occurring. I might have done things differently had I understood what was going on.

Is all of life like this? God knows I feel clueless much of the time. I continue to make plans. Are they meaningful on any level?

I have felt so stuck for so long. I don’t know what the cure is. I have believed such garbage in the past, especially religious rubbish. I now trust no one, including myself. I have been wrong. They have been wrong. We are all so painfully wrong. The only thing worse than not knowing is believing people who don’t know what they are talking about but pretend that they do. The emperor has no clothes. We are all naked.