My Mother’s Coma (article)

In July 1996, at the age of 84 years, my mother (Mum) fell into a comatose state as a result of a decreased appetite and continuing the usual dosage of her diabetic medication. She was living with a caregiver in her own home, as none of us (six children and her adopted daughter) were living in my home country of Guyana. Two of my siblings had visited her during the previous six months but had not noticed signs of the problems which we found on our arrival. My mother died 12 weeks after the onset of her coma.

The media presentation during the past months both of the suffering of Terri Schiavo and, more recently, the death on April 2^nd of Pope John Paul II, brought back vividly to me the emotions that I felt during the period that we “waited” for my mother’s death. I saw similarities and contrasts between these two highly public events and the more private dying of my mother. During those 12 weeks, I suffered from anger, uncertainty, guilt and worry, while trying to live my professional life here in New York City, thousands of miles away from where my mother lay in her bed.

I noted a medical similarity in the way in which my mother and Terri Schiavo fell into their comatose states, as Terri Schiavo’s coma appeared to have been brought about accidentally from inappropriate eating. Likewise, just as Terri remained in that state for years with no end foreseen, we had no idea how long my mother would continue in this state, whether days, weeks or months. In contrast to my mother, who had lived a long and fruitful life, Terri Schiavo was a young woman who was expected to have many active years ahead of her and instead was enduring a prolonged agony before her death.

When I followed the last days of the Pope’s life, I felt that he had taken control of the end of his life—he had been told how serious his health condition was, he refused to go to the hospital, and he was dying as he wished, enduring suffering for his faith. Why did I compare that with my mother? My mother was a woman of faith, an active member of her church, who had become a Diocesan Reader in her sixties after years of membership on various church committees. So I looked at the natural death in Rome and wished that my mother had gone in the same manner. For what reason had she to suffer? As a woman who had been so active, with lots of social activities, she would have hated to know that she was going to lie there for the last three months of her life. At the time, I wondered why God was asking her to go through this.

As soon as I learned of my mother’s situation, I left New York with a cousin who was very close to my mother. On arriving in my native country, I found one of my sisters, my brother and his spouse already there. A doctor friend of ours had been asked to take over my mother’s care. He had already inserted a feeding tube to maintain my mother’s nutrition. No other medical procedures were undertaken and it seemed that there was nothing else medically that could be done for her. As the

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doctor also had a hospital of his own, I asked him about admitting her there as a patient; he realized that we could not stay there on an extended basis—we both had jobs and lives to return to abroad.

When I asked him that question, I was not clearly thinking about the implications of that request, except that there would be medical personnel to take care of Mum. He replied that he could admit her and I might feel that I had made the best arrangements, but that a person in a coma, in a separate room, would not be given much attention; she could not call out, or ring a bell and the nursing staff would not be checking constantly—in fact, he said that if I wanted her to die quickly, that was the way to do it! He recommended that we hire nurses to care for her at home and he would check in on her regularly. In response to my query, he said he could not tell me how long she would or could remain in that state.

My siblings and I did not discuss the implications of this decision; the three of us present decided that we had to take the advice of the doctor. What else could we do? We did not question whether the feeding tube could remain there indefinitely, nor if feeding her like this was the way to keep her in the best possible condition, nor for how long. In fact, the nurses massaged her and did everything possible to make sure that she did not get any secondary problems such as bedsores. I had no idea how long this could continue and was upset when my brother said some weeks later that people remained in this condition for years! In any case, there was nothing for us to “unplug.” So events occurred and we went along with them.

I had a deep anger at that time—with the caregiver for her actions which had led to the situation we faced; with the friends who had recommended her to us and who while visiting did not feel that they could report any discrepancies they noticed; with myself, for not asking Mum why she had said on several occasions that she “didn’t feel she was living in her own house.” In fact, what my mother was trying to say was that the caregiver had moved her daughter and two grandchildren into the home and they all were being looked after from the support that we sent for Mum and the caregiver! This intrusion is why Mum did not find her meals appetizing and barely touched her food.

I was also angry with my sister and sister in-law as they began to sort out Mum’s clothes, putting them into piles to give to various friends and charities. When I protested to my brother, he simply replied that they were right as we had to start clearing the house and that if Mum came out of the coma he would be very happy to buy her a new wardrobe! The desolation of the house, and the feeling that we were already acting as if her life had ended, remained with me in New York City.

Though my three brothers and three sisters felt burdened by my mother’s sorry state, as the second daughter I felt a special responsibility. I had been given the role of caregiver ever since the age of seven or eight when I was asked to care for the young children of visiting friends. In high school, under the chaperonage of an elderly great aunt, I ran the household while my parents visited the United Kingdom for half a year. As so often happens in West Indian Society, as the only unmarried daughter I had the greatest responsibility for the care of my parents. My sense of obligation to care for my surviving parent increased after the death of my father, who after 52 years of marriage had died on Christmas Day, 1989. At a distance of 2,541 miles Mum’s coma put a special burden on me. It also left me angry with my siblings, who had long expected me to bear the heaviest load of care in the declining years of our parents.

During the period of my mother’s coma I was often on the verge of tears and felt emotionally burdened, wondering how things were playing out at home. In bed at night I would see again with dismay and sadness how she looked lying there, not seeing us, but somehow aware of her surroundings. My cousin and I rotated calling the nurses on a daily basis to see how she was; we were in touch with a family friend who visited every day at different times to check on things; her church friends went every week to sing and pray for her and the doctor visited. But day after day I kept wondering when it would end—would this be the day that we heard from the nurses or our friend that Mum had died? I felt guilty thinking that way, and yet it seemed to me that my mother was not really “living” while lying there in that bed, no matter how good her care was.

When the end came, I felt a great relief but also so much guilt that my relief was so great. Notifying others of the end, I felt that I was coming out of a state of suspended living, and that the undefined, uncertain period had ended. Now things were definite; I knew what arrangements had to be made, and

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everything was straightforward from here on. I did feel some satisfaction at the knowledge that most of us children had been able to go there and “visit” with her; that on the day that she died my adopted sister had called out of the blue and the nurse had put the phone to Mum’s ear for her to listen, as it is said that hearing is one of the last senses to go. On the evening of her death another brother and sister had just touched down in Canada after their trip home, so all of us had managed to say farewell to her.

Clearly, my family’s experience with our mother’s coma was very different than that of Terri Schiavo’s parents and siblings. Our response to Mum’s coma was to try to keep her as comfortable as possible while awaiting her anticipated death and saying our goodbyes. They sought to keep Schiavo alive indefinitely—hoping for a miraculous recovery. Feelings of guilt and helplessness were intense in both cases. The Schindlers sought to deny inevitable death in the face of long-term coma, while we reluctantly accepted it. They focused their energies on rage against her husband (her legal surrogate), and on ultimately and fruitless legal and political struggles to keep her alive at all costs. I certainly felt lots of anger and guilt, but did not let these interfere with my duties as the daughter with the greatest responsibility for Mum’s care. After these two deaths, both families were left with the feelings of grief, guilt, and relief that follow such an ordeal.

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