By Audrey D. Cole
When Stephen Fletcher tabled his Private Member’s Bills in the Canadian House of Representatives, I started to think about how people die and how utterly important it had been for me to be with my late husband Fred in that process. And I also thought about how much it would have meant to me were our roles to have been reversed.
The room was quiet, the door firmly closed. His sister and her husband were not returning that night; they needed to catch up on lost sleep. For the same reason his brother-in-law, although instantly awake when needed, was dozing on and off on the recliner at the foot of the bed. If there were the usual hospital signs and sounds of constant activity and caring, I wasn’t hearing them. They were out of my range, somewhere else, not there by his bed where I sat. With bars and knobs and levers everywhere, it is not easy to sit close to someone lying in a hospital bed! Nevertheless, at least in my imagination, we were alone, the two of us, together in our own little world.
We held hands under the covers as we had held hands so many times in the forty-nine years we had been married. Well, to be truthful, I held his hand but he didn’t draw it away; perhaps he couldn’t have drawn it away but I knew he would not have wanted to do so. I sensed that he, too, was feeling comfort from that simple contact in this, the most difficult of the many troubling situations we had faced together over the years. But he couldn’t say so. He could no longer speak.
Already, it seemed eons since I had last heard his gentle voice. Was it yesterday? Or, perhaps, the day before that? Time moves at such odd paces when in the company of a dying loved one in a hospital bed. Things move quickly in moments of panic or crisis (not necessarily the same thing) and time keeps pace with them. It moves more slowly as one simply sits and watches. Even then, it had moved at a different speed when he was sleeping peacefully than now, when his laboured breathing was draining the little energy that remained.
It had been a profound shock to both of us to realise how ill he was when we arrived at the doctor’s office a little over a week before to hear the results of tests he had undergone. Despite the many ups and downs in his health during the previous twenty years or so—the seizures, the heart attack, the stroke, the crashing falls, the injuries sustained as a passenger in a car accident—he had always recovered. He was a survivor.
It was a family joke that he survived these seemingly endless blows to his health and well-being only because there were so many books still to be read. Since childhood, he had been an avid, even insatiable, reader. On that first evening in the hospital after the successive moves from doctor’s office to emergency and, finally, to ICU, there had been no time for reading—no time, even, to switch on the e-reader he always carried in his pocket. But the urge had not been tempered by the busyness and the trauma. When I was requested by the ICU nurses to leave the room for a short time as they did some initial tests, he had signaled that he had something to say. He whispered his request that I please slip home (20 kms away) to bring him the first three books from the top shelf to the right of the west window in the library and to, please, be careful on the library step-stool! He was sleeping when I returned. He was comfortable, relatively stable, and closely monitored but I was torn about leaving him, even for a few hours. Eventually, knowing that worse was to come, I was persuaded to go home for a fitful sleep.
When I returned the following day, he had been transferred from ICU to a room he shared with another gentleman also nearing the end of his life. It had been determined (although he did not, personally say so) that nothing but a new one could fix his dying heart, yet, were there to be one instantly available, surgery would, in and of itself, kill him. Deep down I had known this, almost from the moment we had arrived at our doctor’s office and she, concerned by the sound of his breathing, had quickly asked him to sit down. That had been days ago. Since then, despite his condition, he had managed to finish reading one book and half of the second book.
During those days, there had been good moments and not so good moments. Perhaps it is the latter that stick firmly in the minds of people who cannot reconcile the uncertainties of a natural death with their notions of life as it should be and want society’s agreement that their own deaths be assisted at public expense and with public support to avoid those possible realities.
But there had also been so many good moments—moments that might never have happened in other circumstances. It had been good that our son had been able to visit most days, brought there by caring staff to sit quietly by the dad he adored. That feeling had always been mutual. They had enjoyed a wonderful relationship, the librarian and intellectual searcher of truth and the son, a man of unknown intellectual capacity, of deep but never articulated understanding of what really matters in life. Towards the end, their communion had been on equal terms since neither was able to use words. But words were unnecessary anyway: This was about love and sharing one more time in which one sat with Dad and waited.
Also among the good things had been the many little jokes by this lover of the written word whose dry humour could usually produce some witticism even in the most precarious of times. His roommate’s family remarked often on their delight in his quick, humourous comments on what were not always pleasant hospital-like situations.
And then, of course, although neither good nor bad, there had been the strange incident of the elephant in the room. Not the “elephant” one might assume from the situation since everyone—perhaps, this time, even our son—knew what was happening. It wasn’t a question of not talking about it, there was no need to talk about it. Nevertheless, it had come as something of a surprise when he suddenly said, “What’s that elephant doing in that picture? Why would anyone paint an elephant in that kind of picture?” I turned round to look at the picture on the wall opposite his bed, a small and pleasant watercolour of a rural scene by a river along the banks of which there were bushes and trees. “There is no elephant,” I said, “just bushes and trees and a river!” “There is an elephant!” he insisted, “Can’t you see it?” I couldn’t. Huh!! said his expression! I was concerned that perhaps his eyes were playing tricks, perhaps this was some signal of change. He said he was fine! I was tired and needed a break. I asked if he would mind were I to go downstairs for a cup of tea. “Sure!” he said.
I was away about twenty-five minutes. I returned to find he was not there! “He fell,” said his roommate’s wife. “He is down in X-Ray.” He had needed to use the urine bottle but could not do so whilst lying down. He managed to sit up and somehow swing round to the side of the bed but his severely infected leg had given way. No broken bones but, adding to the inflamed colours of the infection, his leg was now covered with felt pen inked lines and circles showing the parts of his leg that had, in effect, already died, the blood vessels having dried up and cracked or broken.
But now, a day later (or was it two days?), we were in a different room next to the ICU. The end was coming closer. He was no longer able to talk. He would disturb when the pain became intense but soon he was receiving pain killers by injection. There was nowhere for an IV drip to go; his kidneys were no longer functional. He still looked the same as always but his body was breaking down and his breathing becoming ever more laboured. Perhaps there would be no time to tell him that I had seen the elephant. When they wheeled away his bed to the other room I had bent down to pick up something from the floor. As I looked up, I saw it! Clear as daylight! My head had been in the same position as his head had been when lying in his bed. The “elephant” was charging forward, trunk raised high. Only at that angle was the “elephant” visible in the shading of the bushes and the trees. I told him, anyway. I wanted to believe he understood.
I also wanted to believe that he understood how much our son and I, the family and so many others, loved him. But I knew that he already knew. And so I sat, holding his hand, keenly aware that we were so very close to the end of our time together. Deep in thought, I suddenly became conscious that his eyes were open and he was looking directly into mine. A few tears were falling down his cheek. Although he couldn’t speak, I knew. He was apologising for leaving us. I kissed him and told him it was OK. It wasn’t his fault. And I loved him! He drifted off again, all remaining energy devoted to breathing. Still holding his hand, occasionally wiping his beautiful face I was thinking about the wonderful life we had shared and the “togetherness” that had sustained us through the tough times. And, then he was no longer breathing! He’d gone! He’d had no wish to die. There was so much still to do, so many books still to read, so much still to learn, so much for which to live. Even at 92.
It is almost three years since that night. I cannot imagine feeling the need to write about a matter so intimately personal were it not for the growing insistence of the call for publically assisted dying. The recent tabling in Canada’s Parliament of a Private Member’s Bill to that end led me to reflect on how people die and the significance of sharing those last moments with one you love. I think again of the warmth of my husband’s hand, those few tear drops, the sheer emotion, the mutual love and that final moment, an experience never again to be repeated. I am haunted by the thought of what that final time together, that time of pure love, might be like for the lover of someone who had chosen an easier route to life’s end. And, in stark contrast, comes the image of a doctor, fulfilling her or his public responsibility, sticking a needle into an arm or handing over a potion to drink, knowing that would mean the end.
Audrey Cole has been a tireless advocate for the rights and full inclusion of people with disabilities, particularly people with intellectual disabilities. Best known for her work on supported decision-making and on genetic discrimination, she shares the concern of the disability rights movement that the incessant call for assisted suicide sends a cruel but implicit message that life with disabling conditions is a life not worth living.
This article has been reprinted with permission and can be found at http://www.mercatornet.com/articles/view/until_death_do_us_part.