Hospital Bed of Honesty

We were a family with our share of secrets.
Until the day I took my brother to the doctor and asked if all the tests that ought to have been taken had been taken, Bob and I had never discussed the fact that he was gay. Our family danced around this truth my entire life. Denial of catastrophic proportions, a dissolved marriage, two sons left to sort it out, a life partner HIV negative and a sister, eighteen years younger, left to tend to the deathbed. I was angry. The doctor had presented us with an option to shunt Bob’s brain. A tube would be inserted to drain the fluid that was creating the pressure on his brain. Relieving the pressure, might possibly restore Bob’s ability to communicate lucidly – for a while. The fact that Bob had no insurance was an issue. So the doctor concocted an elaborate plan for us to take Bob into the emergency room in the middle of the night when they could not refuse treatment. The idea seemed far -fetched but we decided to talk it through as a family. Although the doctor could not guarantee the results, the most positive outcome could give Bob a few more months. His condition would be uncertain. He could be blind. It might prolong his suffering. The family gathered in Mother’s living room to discuss the pro’s and con’s of the shunt as Bob lay in a hospital bed in Mother’s den unable to speak for himself.
We sat in a circle. A complex, family portrait. Mom sat on the couch. At seventy- five, she had already buried one son and her husband. How she was able to withstand this agony was beyond me. And there were Bob’s sons, Matt and Rob sprawled on the living room floor. And there was their mother, Peggy, seated next to her partner, Linda. Bob’s partner, Lenny sat by Mother. And my husband, Steve, who would continue to carry the mantle and burden of a family business left in ruins sat, quietly supportive with me on an oversized footstool. With a steady hand and just enough distance, Linda, facilitated the discussion and counted the votes of whether or not to go ahead with the shunt.
We talked as if we could bring him back. It was tempting. He’d slipped from our grasp so quickly and suddenly. If we could only have another chance to talk, to hear him laugh, to see his eyes sparkle again. But what would he do with more time with AIDS? His mind was flooded with infection. Drowning in fluid from the hydrocephalus. If he slips into a coma, then what? No food, no water? Or do we bring him back from this death- like dementia?
We voted on whether to shunt his brain or not.
Lenny voted no. Mother voted no. Matt examined the choice. What might his father do with more time? Rob wasn’t sure.
Mine was the only yes vote. Yes, I thought, bring him back. Let me talk sense with my brother just one more time. Let me take him to the opera one more time.
A selfish vote. I wanted my brother back.
The family agreed not to shunt. It was a vote for death.

The next morning, to my surprise, Bob awoke alert. I looked into his eyes. We decided to let you die, I thought to myself. Do I tell him? Do I ask him?
“There is an operation,” I began, “that might give you more time. But we don’t know whether you would walk, or talk. The risks are blindness, deafness, infection, incontinence…none of us know how long we will have here on this earth, but what we do know is that every moment we have with you, Bob, is precious.”
My insides were raw.
What is your vote, brother, I thought. Please make the decision so that this does not rest on our shoulders. I look into his eyes, “Do you want to have the operation?”
“I suppose not,” he said.
I stroked his face.
We were exhausted. Lenny, his friend from New York, Murray and I sat by the pool as I agonized over what to do. It had all gotten to be too much. We had decided for Mother’s sake, we had to move Bob out of the house. It had been a constant revolving door of nurses, caregivers, social workers, friends and family. The nights were long. Bob’s night sweats meant his gown and bedding had to be changed through the night. Mom wasn’t sleeping and neither was I. The decision was made to move Bob to a hospice.
(Aria - A Sister's Journey With AIDS continues in next post Lamantation of the Days)