My Mother’s Transition

In 2014 my mother collapsed in her apartment in Brooklyn. Simply, her legs gave out. An ambulance took her to Maimonides Hospital to diagnose the problem. Initially she was diagnosed with having had mini-strokes. As she had been to hospital over the years for one problem or another, I wasn’t concerned but felt best to visit her; overruling her objections to do so.

At hospital I was told she was in Room 520. I went to Room 522 where there was an old man in a wheelchair sitting outside the room. I approached him and said: ” Mother, how you doing?” He looked a bit confused, so I said: “Mother, it’s me, Victor. You ok? Don’t you recognize me?” Then quickly, “This is room 522? You’re not my mom. Have a good day.” He laughed.

I then went next door to Room 520. My mother was there, in bed, alert and smiling. As well, her doctor and a nurse were there. After greeting my mother, I turned to the doctor and asked how my mother was doing, whether I needed to make funeral arrangements. Everyone was a bit shocked but for my mother who knew me too well. But I then added: “No, I understand, this is a serious matter. But before we get into it, I want to be sure I understand the relationships here. You are the doctor, she is my mother and I am her son. You’re not the patient, she’s not my son and I’m not my mother?” From there we got onto business. The doctor said that he initially thought my mother suffered from mini-strokes but as her neurological motor system was deteriorating further, she might actually have Guillain-Barre Syndrome.

Guillain-Barre is an autoimmune disease wherein the body’s immune system attacks the peripheral nerves and damages their myelin insulation, rendering the patient paralyzed to a greater or lesser extent. Within a year, 90-100% recovery is possible.

After extensive and painful testing, including a spinal tap, the doctor determined she in fact had Guillain-Barre. In the ensuing days, as her condition worsened, she was put into hospital’s Intensive Care Unit. I hired additional nurses to be by her bedside 24/7. In the ICU she was put on a ventilator and a feeding tube was inserted into her stomach which made her two favorite activities, eating and talking, not possible.

A couple of days later I visited my mother. I asked her nurse how my mother was doing. The nurse said I need to ask the doctor making rounds. I went out the room looking for the doctor. I approached a man in uniform and asked him how my mother was doing. Another nurse volunteered that the man I was talking with was not a doctor but an HVAC man. That didn’t matter as for me every opinion counts. I took the HVAC man to my mother. I told my mother that he was from Harvard Medical School and a specialist in Guillain-Barre. Then I said: “Doctor, what do you think?” Well, he was a religious guy from Jamaica and said best we consult scripture. My mother laughed.

Some days later, as her condition stabilized, my mother was moved out of the ICU into a less intensive care patient’s room. By then my mother had been on the ventilator for 10 days. Medical protocol called for her to be taken off the ventilator and to be intubated as continuing with the ventilator increases the risk of infection. Alternatively, she could be taken off the ventilator and effort to breathe unaided. If she was unsuccessful breathing, she would suffocate and die.

I told my mother that the next step was intubation and that over time she might get better and lead a normal life. However, as she was 86, she might never recover and be with feeding tube and intubation until the end of her days. I asked her what she wanted to do, try to breathe on her own now at the risk of dying or go with the intubation. She couldn’t speak but pointed to me. I asked her if she wanted me to make this decision. she shook her head indicating “yes.” I then said: “OK, this is what are going to do. You’re going to hold my hand as tight as you can, close your eyes, concentrate on breathing and the nurse will take out the ventilator. If you can’t breathe, you will transition. So before we get started, I want to tell you I love you, it’s been a wonderful trip, thank you for everything and God bless you.” The ventilator came out and my mother lived.

My mother never fully recovered and was wheelchair bound until she passed a couple of years later from congestive heart failure.

My mother didn’t have a lot of marbles but whatever marbles she had she retained until she passed. In my mother’s last days she said she had but one wish. She wanted to pass in the daytime, not at night. I asked her why the daytime and she said she would likely be sleeping at night and not during the day and she wanted to see what it was like to die. She died a couple of days later, after the sun turn from up high, in the early afternoon. I guess she then knew its journey from there.

That was my mother. No wonder I am who I am.