Mom was the last Marion to leave West 83rd Street. Apartment 9E at 222 was emptied when it was clear she would no longer return there. Although this is not about my growing up in the usual chronological context of this blog, it is certainly about my growing up.
It was 10 o’clock on a Tuesday night when the phone rang. My mother had been in the hospital since Friday, hospitalized for a stroke that left her unable to swallow or speak. The doctor said, “I know she has a living will and does not wish to be put on a respirator but she has pneumonia, it’s curable, and I think she should be.” I asked automatically, “How much time do I have to make a decision?” The answer came quickly, “Five minutes. I’ll call you back.”
My sister was home, the discussion was brief, we didn’t have the luxury of time to explore all the issues. When the doctor called back, exactly five minutes later, I said, “Go ahead.”
“All right,” she said, “I’ll get back to you later.”
Wednesday afternoon I got to see what I had wrought. My mother was conscious and alert and looking like hell, but alive. The resident of the moment said, “Your mother has had a heart attack. She was in heart failure last night.” If I had been informed of this the night before, we would have refused permission and death would have followed.
My visits from the suburbs to the hospital in the City became daily. Conscious, alert and miserable, Mom communicated with hand signals and notes. Her evident discomfort and notes such as “Never again” and “How do I die?” became open wounds for me.
After consulting with her doctor, I concluded that there was only one way to get her off the respirator. “The only way…is to insert what they call a Swan/Ganz catheter through your neck and into your heart to see what’s going on,” I told her. I was advising her that another invasive procedure was necessary. Again, I seemed to be contravening her desire. She would follow my lead; I was her son and she had grown to depend upon me in times of confusion. She agreed to the procedure.
She was transferred to coronary care two days later and the catheter was inserted. It provided the necessary information. In three days Mom was free of the respirator. That time we got the results we dearly wanted.
The next day she returned to the neurology unit for treatment of the after-effects of her stroke. Asked if she would agree to the insertion of a feeding tube directly into her stomach, she said yes. “No feeding tube” was in her living will, too, but she changed the game plan.
Had we been given the right information on that Tuesday night, she would not have had the option; had we been given the opportunity, thinking it was what she wanted, we would have had the respirator turned off. I was no longer sure what the proper course should be.
While Mom had lain on the respirator, tubes running hither and thither, electronic counters of this and that beeping and flashing, I wondered for whom I was doing all this. Was I doing it for her or for me? Signing forms approving Do Not Resuscitate orders seemed to be a daily occurrence. It seemed to be what she wanted. My guilt – and confusion – increased every time I signed one of those forms.
We talked, my sister and I, about the future: the apartment, if she gets better, but more often, what will we do with all that stuff when she dies? The guilt over this discussion was equally consuming.
We were sure that the Mom we had known – the fighter – was gone. She had been in the special acute stroke unit four times. The staff in neurology had liked her for her spunk, for her sense of humor and for her successes. They had asked after her each day she was in coronary care and got big smiles on their faces when she returned to them. Surprisingly, her fight seemed to return after one day off the respirator.
“Now what?” was the question I kept asking. If we had said “no,” she would have died.
The medical residents in coronary care asked at one point, “How did your mother arrive at the decision to make a living will which precludes the use of a respirator?” I answered as I thought she would: “Her husband lingered with cancer of the throat. One very close friend went in the back seat of a taxicab; he was considered lucky. Her best friend lay in a nursing home for months, a total vegetable. Her sister had what appeared to be Alzheimer’s disease and died in a home; her brother-in-law died of Parkinson’s disease in the same home.”
When I talked to Mom about this conversation, I learned that I was right. Those were some of the contributing experiences to her life-or-death decision. But at that point, it seemed that life was too precious to give up, or perhaps the thought of starving to death was too much; she wanted the feeding tube.
When we “talked” about “what next,” she had written “If I’ll get better, do whatever you have to. If I won’t, then stop.” But what’s better? To that question I got no answer.
Pneumonia returned and I asked, “Do you want the respirator again if they say you need it?” Her gesture had clear meaning as she moved one finger rapidly across her throat, “Cut.”
Mom went back to 222 very briefly. It had been home for over 45 years.