We received the call Sunday night that my mother had been transferred from the nursing care facility and admitted to Newton Wellesley Hospital with a case of pneumonia. The call came while I was out dining with a friend and it shocked me to hear of the sudden change. On my ride back up the dark and empty interstate highway toward home, I received a call on the cellphone from one of the doctors attending to my mom's condition. He advised that we should consider the possibility that she might not recover and to prepare for the ultimate eventuality that she might die. It was definitely not the sort of thing one wants to hear while negotiating a dark interstate highway through the mountains.
I arrived home but broke down in tears. It was the suddenness of all of this that had caught me off guard. I packed up and readied myself to head out on Monday to visit with her, hoping that I would arrive before she passed away. Amazingly, we received a call from the doctor's the next morning that she was doing much better and that the anti-biotics given to her had stabilized the pneumonia. With a snow storm in progress and her condition stabilized, I waited until Tuesday to head down south to Massachusetts. Joanne was still dealing with being sick and decided that with her condition being stable, she would stay home to try to recuperate to which I thought this was best.
The drive down was uneventful but my visit with her was shockingly vivid. The image of this frail woman, who was all of 73 pounds now, laying on the hospital bed, a shell of her former vibrant and energized self, stared back at me with a look of love. Although her speech had become labored and strained, she was able to utter my name. I told her I loved her and she murmured the same back to me.
My sister had made last minute arrangements with a one-way open ticket to fly in from her home in Las Vegas to be with her as well. Hers was a sleepless night, booking a last minute flight and packing to be at the airport for an entire full day of travel cross continent. She arrived in Boston in the afternoon just in time for the rush hour and we waited patiently for her to procure her rental car and to wend her way through the maze that is Boston Traffic out to the western suburbs where my dad and myself were.
I could sense that she was bothered by the sight of my mom's condition as well when she first saw her. The deterioration of her condition was more notable in just a few short weeks. She was having difficulty swallowing and speaking - these conditions being symptomatic of the brain shutting down motor functions. With difficult swallowing, eating was becoming impossible and drinking was becoming labored at best. The doctor noted that we might have to make a decision as to whether or not to implant a feeding tube in her or not for her life to continue. There was much to think about as I brushed my mom's hair with my fingers and told her how much I loved her. Snow was coming in later that night and I shared a few last moments with her as I prepared to make the drive back up north to be with my sick spouse and to plow out the snow which would soon begin to fall It was another long drive home in the inky darkness, alone with my thoughts and emotions to keep my company.
The snowstorm came, just as had been predicted. The labor of shoveling and snowblowing and of trying to rake the snow off the roof was enough to keep my mind off of the pressing issues weighing heavily on my mind as it was all of ours. There were phone calls later in the day and decisions to be made. The time had come to determine whether or not we wanted to extend my mom's life with the assistance of a feeding tube. It was a difficult decision to make and her suffering and pain which she was dealing with both physically and mentally weighed heavily on our minds. I recalled my mother once saying to me that she never wished to be kept alive on life support should she ever require it and that conversation we had years ago resurfaced now. My sister and I, along with my father, agreed that we would only serve to make her comfortable in her final declining days and made the call to instruct that she only be given food and drink as she desired.
The snowstorm blew out as quickly as it had arrived, leaving a bright sunny day and light winds in it's wake. A few birds were chirping cheerfully in a nearby branch of a pine tree as if winter were a distant memory. I cleaned up what snow was left to be handled and readied bags to pack up and head back down to Massachusetts again, this time with Joanne, who was feeling somewhat better now. With the coming of sunset and a darkening sky, we packed the car, closed up the house and headed out on the road once again. Snow had spiraled back in around the back side of the departing storm system and turned what was a bright, warm and sunny day into a dark and snowy evening. The road crews had been caught off guard apparently as well and had abandoned their services to the roads and highways we now trudged through with our four wheel drive. The chatter of the ABS brakes reminded us of the difficulties of the winter trek ahead of us as the snow swirled in flights and fits around us.
Joanne and I left the house and jumped on the interstate, which was in no better condition than the country roads we were just on and I set the cruise control to 40mph and tried to relax as the headlights bounced their light off the whirlwind of glittering snow in the darkness. It was just then that the cell phone rang. It was my father who had been at the hospital and gave us an update. My mom had not eaten nor drank anything at all today. We asked why and were told that it was simply because she would not e able to swallow. It was disturbing to hear that she had asked for something to drink and to eat and was denied her request. I had agreed to comfort measures only at this point in her life but not to cruelly denying her of her wishes should she want to eat or drink. The last few miles to the hospital were difficult to manage as I thought of the suffering my mother must be enduring and her sentient moments when she was lucid enough to be aware of her surroundings, to ask for food and water, to be denied, and not to know why.
We arrived at the hospital, parked in the garage and threaded our way through the maze of corridors to the elevators up to the Intensive Care Unit of the hospital. Passing the nurses station with the constant array of alarms and flashing lights did nothing to steady my nerves as we both approached my mothers room. Entering, we found my father sitting on the couch at the far end of the room with his head held propped up in his arms and my mother laying beside him in bed. Her eyes were closed and her legs fidgeted back and forth restlessly as she let out occasional moans and groans.
I walked over to her bedside, bent down and told her softly that I loved her. Her eyes opened and she looked up at me. Although she did not speak, her eyes did. I asked if she was thirsty. What seemed a moment passed and then she hoarsely uttered, "Apple Pie...."
I knew she was hungry but there was no way for her to swallow to eat. We had talked about a feeding tube but it would only prolong her agony as her motor skills failed and her basic bodily functions continued to dwindle. It was a losing battle any way we tried to see this. I thought of what she said and tried to offset her request.
"I have apple juice here. Would you like some?", I asked.
She nodded an affirmative. Her throat was so parched that she could only hoarsely utter when she spoke. I took the cup of apple juice which lay on the table by her bedside, soaked the small sponge tipped popsicle stick and placed it up against her pursed lips. Her dry lips accepted the moist, juice laden sponge and she opened her mouth and bit down on the sponge. It wasn't until she bit down on the sponge and tore off a piece and tried to chew it that I realized she was so hungry that she was attempting to eat it. I told her it was a sponge and not to try to swallow it as I frantically tried to coax her to open her mouth so that I could retrieve it.
I fished the piece of sponge from her mouth and tried again to administer what small amount of liquids I could. I listened and watched as she attempted to swallow the minuscule amount of liquids which could be provided and cried as I saw her gurgle a cough as she tried nearly in vain to swallow. We had made the decision to not allow her suffering to continue and it was tearing me apart inside.
My sister arrived into Boston late in the afternoon, rented a car and drove out to the hospital. Arriving shortly after 6pm, she entered the room and I could immediately sense the expression on her face as she saw her mother again for the first time in nearly two months. Her deteriorated condition, both mentally and physically were apparent by the sullen and serious look which was painted upon her face. I could sense, without even saying it, exactly what she thought and I, deep inside, knew.
I asked to speak with the attending physician about other options, other possibilities, anything that might provide for a better outcome than this clear and present finality which stared into my face as I looked down into her eyes. We paged the doctor and he presently appeared in the room. he explained the nature of the progression of the disease and that the brain was slowly shutting down. Against all measure of recourse which my mother could muster, it was a losing battle and the doctor knew it. I knew it. We all knew it. But I could not help but think that our choices being made right now were not, in a sense, murder. I could not get over the thought that I was allowing my own mother to die before my presence.
The doctor considered for a moment how to proceed and then spoke. He related a story of his own parents and of his own mother and of the nature of the very same disease which robbed him of her. He explained that we could only buy time but we would be lengthening her suffering as other aspects began to fail further. There was nothing we could do that would counteract what was happening and nothing we could try which would give her any additional quality to her life. We talked a bit more with him and then he left. Our choice remained the same and the room went silent save for the sounds of medical equipment whirring in the background.
Mom had fallen asleep but awoke when my sister leaned over and spoke to her. Her eyes listed from person to person as she peered up from her prone position. I held her hand and gave her another swab of the apple juice. It was just enough moisture for her to begin uttering words, unintelligible as they were to us. My sister tried to comfort her as she tried to speak again.
"I'm afraid", she murmured in a raspy and rough voice.
I thought I knew what she meant, but wanted to be sure. I asked, "Afraid of what? We are here for you". I was trying to reassure her but I am sure she could tell otherwise.
"I'm afraid", she started again, paused and then continued, "....of losing you".
We locked eyes and it was all I could do to not tear up. I tried to hold it together for her... for her not to see me break down now and to affirm this fear and ultimate truth.
My sister looked directly at me and spoke to her saying firmly, "Chris has everything under control".
My mom used every ounce of strength in her body to re-utter those same words back to me exactly. It was a raspy and strained voice, but the loudest I had heard in months from her as she stated it back, "Chris has everything... under... control". The strain of just yelling those words back in her hoarse voice took every ounce of strength she could muster and she presently slipped back into her somnolent world of sleep. These were the last words I would ever hear my mother speak to me..... ever.
We were told that my mom might last a week or even two in this degrading state. No one knew for sure exactly. She was transferred the next day back to the nursing care facility and we headed back up north to take care of another snowstorm.
We turned around and made the 100 mile trip south on Saturday to visit, not knowing that this was going to be the day which she would die. Arriving early in the afternoon to Boston, we stopped first to pick up my nephew from his work to allow him some time to visit. By 2:00pm we were at the hospital and my mom seemed to be resting comfortably, although her breathing seemed labored as she lay there with her eyes closed.
The severity of the situation was realized when a nurse from hospice arrived and asked to speak with us. I had a panic attack and a nervous twitch began as I tried to stay calm. I knew what this meant. We all knew. We were told that she would likely not be long with us although the amount of time was not certain. We were told that she would be made comfortable and that they would give her morphine when the time was right, so that she would not feel pain. I was numb inside as this orchestra of death was revealed to me in each movement. There were stages and things which needed to be done at each point. I only asked that she make it as peaceful for my mom as possible and we returned back to her room to be with her.
It was difficult to watch in those final hours. Standing over her and stroking her hair, we each took turns being by her bedside. It was too powerful emotionally for me to stand it for long and I would often find myself in tears as I touched her and realized that this simple connection was powerful enough to break me down entirely. At times I found I had to escape and leave the room, retreating to the empty common room down the hall. There I peered into the bird cage which sat in one corner. It housed a small, pale blue parakeet which hung onto the rungs of the cage in fear as I approached. It's left wing was broken and hung limply as it panted in fear of my presence. It was alone in the cage and likely knew no love in its solitude.
A few moments would pass and then I would return to be in the room with my mom. We each did this, taking turns, as emotionally it was too difficult to bear for any prolonged length of time for any of us. My nephew was taking this with great difficulty and my sister opted to drive him home and to return. Upon her return, she, as we all did, could see that my mother's breathing was becoming shallower and more labored. She took small breaths, one about every 4 seconds and then every 5. In short order it was becoming longer and longer between breaths and the expressions on her furrowed forehead foretold of the pain she was in.
The hospice workers stepped in now and started administering her pain medications sublingually under the tongue. She would gurgle momentarily as she aspirated even these tiny amounts of fluids and then her face would soften and she would seem at ease once again.
The levels of pain began to increase and the periods between doses of morphine shortened. I took the opportunities when I could hold back the tears long enough to approach her bedside, fondle her hair and whisper to her that I loved her, we loved her, and that we were all here for her. I told her that it was alright for her to go and that everything would be ok. I reuttered the same words she uttered to me and told her "We have everything under control, it's all OK. Everything is OK. You can rest now"
We didn't know how much time we had, but we did know that my mother had always wanted to have traditional Greek Music played if she was ever to a point near death. We honored her request now by striking up the CD player and some of her favorite old Greek Music and blared it loudly enough for her to hear we hoped.
We had ordered some pizza and subs to stave off the growing hunger pangs we all felt and had it delivered directly to us so that we would not have to leave her side. For a moment, everything seemed uplifted as we partook in what would be our "last supper" together. We ate and told stories about my mom. We joked and laughed together and for the first time in months, my mom was surrounded by her family, all together, laughing and joking lightheartedly.
I am sure that she heard the music playing. I am sure that she heard us. I am sure that she was content that we were all together with each other. It was during mid-bite into a piece of pizza that I happened to look up and watch my mother take a breath. I counted 5 seconds, then 6, then 10 and nothing.....
I dropped the pizza to the floor and hopped over, past my father who held a tight grip on my mom's hand while looking away. I went to her and put my hand on her head, fingers in her hair. I called to my sister and to my spouse, who both had not recognized what had happened and were in the midst of conversation when I interrupted.
"She's not breathing!", I exclaimed.
We all approached and I continued to stand over her as I watched her mouth move slightly as if to breath but without her lungs inflating or deflating. My sister placed her hand on her heart, which was still beating. I did the same. We felt as her heartbeat became fainter and fainter until it was simply no more and we watched the life of my mom leave her body and her expression become vapid and void. She was gone.
I fell to the floor in a huddled mass of tears as I lamented the loss. The years of pain which my mother had suffered; the cancer treatments and the strokes and countless operations... The tyranny of a physically and mentally abusive life.... The struggles which she endured with only a few times when she was ever truly happy... I lamented that I could not have done more for her. I lamented that life could not have been better for her - that I could do nothing now the finality was reached. I felt responsible for not being able to do more and for helping her to die. I wished I could have done more but knew, deep down, that we had done all we could and as best we could do it.
The room became somber as we packed up her clothes for the last time and began to think of the days which would come now.....