As I rushed my mother to the hospital that night it was a replay of many crises in her lifetime. She had been in and out of hospitals for years. Once, before I was born, my mother came so close to death that she believed she'd seen God, and that he had welcomed her.
I feared this crisis would be her last. When the doctor offered a chance at life I grabbed it. The man was a partner to her regular physician, so I trusted his recommendation.
"Let me try something. Let me ventilate her and see if it works," the doctor offered.
My mother was a whisper away from death. The stark choice was to listen to this man, or never bring my mother home. The thought that she would die, right there in front of me, was unbearable.
"Yes." I gave my permission.
Oh, the price of ignorance. Only afterwards did I realize that a ventilator was actually a respirator. This was a word I recognized, respirator. And I knew my mother was absolutely determined that she never be kept alive 'on machines'. It would have been bad enough if I paid the price for my grave ignorance, but it was my mother who had to pay.
The respirator 'worked'. It performed the task my mother's weary lungs could no longer manage, and I was horrified. She was pinned to the machine. The moment she woke and realized she was imprisoned, she shook her head, No! No! Her eyes were wide and panicked.
I demanded she be freed. I thought ventilation was a temporary measure, a transitory intervention. The doctor told me he could not legally remove the machine unless my mother was able to breathe on her own. He had trapped her, and me. Or so he thought.
My battle began at that moment. I called in experts to evaluate her case. The prognosis was always the same. Her lungs were destroyed and she was not able to breathe independently.
My campaign intensified. I went to the hospital administrator and began a complaint process with outside agencies. I gave the doctor who ventilated her a new name: 'Dr. Frankenstein'. Everyone in the hospital, from physicians, to nurses, to administrators, was aware of my accusations, and my crusade to free my mother from the machine.
Meanwhile my mother was desperate. The nurses told me what the future would be if she couldn't get off the ventilator. She would be placed in a ward with other patients, who were lined up like subjects in a grotesque experiment. These patients lay all day long with machines pumping air into them, while technicians periodically siphoned fluid from their lungs. This was the sentence, until they died. Meanwhile, the doctor and hospital reaped great financial rewards each day the ventilated patients lingered.
I had done this. It was my mistake, my desperation that had put my mother in a waking nightmare.
Finally I called so many outside resources, and made such a fuss, that it attracted attention. The partner of "Dr. Frankenstein" appeared at the hospital. His first words were, "What is all the noise about?"
I told him I wanted my mother off the ventilator. He repeated the grim conditions for release 'Dr. Frankenstein' had explained, but he also expressed a determination to help us. He would try to improve my mother's health so she could be weaned from the machine, and after that discharged as soon as possible from the hospital. There would be a narrow window of opportunity. If her lung capacity declined, she would be ventilated again.
The year was 1985. Hospice didn't exist. Living wills were evolving. The hospital and doctor held all the cards. A lengthy legal battle might resolve in my mother's favor, but she would not live long enough to reap the benefits of that decision.
We never left her alone, my sister and I. One of us stayed with her in the day. Another spent the night. A cousin, who loved her dearly, took a 'shift' to give us respite from our vigil. The moment arrived when the new doctor thought my mother was strong enough to breathe on her own. He removed the ventilator tube from her throat. There was a period of acute anxiety as we waited to see if she could breathe. She did.
My mother was released from the hospital on September 30, 1985. The expectation was that she would die within a few hours, or days, at most. She defied all expectations and survived until January 23, 1986. In that time, she was home, with her family. She ate Italian delicacies she loved and saw her grandchildren every day.
We enlisted a licensed practical nurse, respiratory therapists, oxygen machines, and nebulizers to assist with my mother's care. The doctor who had helped us in the hospital visited several times to check on her, but still we lived in a state of apprehension. What would we do if she went into crisis? Could we handle it? The week before she died she asked, "How will I die?"
I passed the question along to her doctor. He explained that he had seen few pleasant deaths. Often, with this condition, there was a struggle, because the patients drowned in fluids from their lungs.
The night of her death my sister and I prayed with my mother, as we did every night. We knew the end was close, but had no way of knowing how close. My mother fell asleep in the middle of a prayer, with the Rosary in her hand. My sister slept on the floor next to her bed.
In the morning, my mother was gone. She hadn't moved. None of the suffering the doctor described was evident. She was smiling. Maybe God greeted her, as she believed he had done before. Perhaps he opened his arms and gave her the welcome we all hope to receive when we have taken our last breath.
Illustration Credits, from LIL, the LMAC Gallery of images:
@yaziris Bird
@muelli Sunset
@justclickindiva Abstract Design