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Confusion

We were all in shock. That morning we had an incrediblyvibrant and independent woman, and suddenly we are beingtold that she is unlikely to live and that if she does, she may bebedridden, a vegetable. Lucinda

As the hours pass, my family starts to assimilate the new reality brought by this hideous day. But beyond the fact that I’m seriously unwell, what is this reality? Will I be operated on or not? Should I be operated on? What are the doctors thinking? Answers are hard to come by, but they keep trying from inside their daze, helping each other as best they can.

I’m still in the emergency ward, and they don’t know why. The noise never stops, day becomes night and they struggle with despair and fear, unwilling witnesses to the human grief and drama all around. The staff shuttles past from one cubicle to another, busy and preoccupied. There is no place for family here. It was not designed for the people who naturally want to stay close to the bedside of a loved one.

The situation doesn’t seem right for someone diagnosed with a stroke. My family’s fear is that leaving me here might be part of the medical decision not to resuscitate. After all, why would you bother putting a patient you weren’t intending to resuscitate into intensive care? My daughter Lucinda recalls an overwhelming sense that I just wasn’t being looked after.

Some family members leave to get sleep, so they can return in the morning. There is little more that can be done or said, other than to stay in touch and make sure I’m not left alone. My elderly parents have yet to be told and one of my sisters departs to share the terrible news with them. The real world is making its brutal way back into everyone’s lives.

On hearing the news, my mother, who described me as her beautiful and fun loving eldest daughter, was overcome with grief. ‘Not the same grief that overwhelmed me when this vital, lovely daughter left home at 22 years of age. That grief was sprinkled with the joy of sharing, from afar, the new excitement she was finding daily. This grief was overwhelming.’

In the emergency ward, my two daughters, Emma and Lucinda, settle in to stay by my side for the night.

Lucinda recalls, ‘It was a horrendous evening. There were not many doctors around by then. There were some nurses, but we had this overwhelming sense of Mum not being looked after. She was vomiting and choking and we had to keep running out of her cubicle and shouting for help. What if we hadn’t been there? Once, we were asked to wait outside the cubicle while a nurse was in with mum and another nurse came along and started shouting at us. What were we doing? We explained why we were there, and then he apologised, explaining that they get people who snoop around. I know there’s a lot of stress in those departments, but it was cruel on us.’

Emma says, ‘We felt so helpless. We felt something urgently needed to be done. Instead we were waiting … waiting. The inactivity was a distressing contrast to our sense of urgency and emergency. We told Mum everything was OK, reassured her that she was in good hands, while knowing full well that wasn’t the case. Mum was in a great deal of pain, asleep, awake, then confused. At one point we realised we didn’t know if Mum’s contact lenses were still in, or had been removed and I found myself adding to her distress as I poked around in her eye, endlessly apologising.’

Adding to Emma and Lucinda’s burden of shock is their confusion about what was going to happen to me. They’d heard several conflicting assessments about what the best course of action might be. The registrar’s grim pronouncement that I was one of the worst he’d seen and that should I survive the night, it would be to spend my days in a nursing home, is still ringing in their ears.

That registrar had also told them he believed a tumour might have caused my stroke. They’d informed him I’d had a pre-melanoma removed a few weeks previously. Now they fear he has jumped to this conclusion, going straight to, ‘Oh she’s got brain cancer.’ They are far from convinced. They had already been told by another registrar, this one from the neurosurgery department, that it definitely wasn’t caused by a tumour and, in her view, I shouldn’t be operated on because of the size of the bleed and the danger it would pose to my life.

Everyone understands that the situation is evolving and the doctors don’t have clarity themselves. A decision that seems right one hour can tip the other way the next. But the lack of clear discussion and direction adds to my daughters’ load. They are trying to do the right thing, but feel confused and isolated, with so much at stake. My daughters are clever and caring girls: Emma the devoted and loving older sister, a wonderful mother to her three children. Lucinda filled with strong ideas, committed to social justice and passionately in pursuit of excellence. Known for her thoughtfulness when interviewing people less fortunate than herself for her work and academic writing, Lucinda would never have left people hanging in despair and uncertainty.

But despair and uncertainty for families is not uncommon. In her memoir of brain injury acquired as a result of a car accident, Doing up Buttons, Christine Durham explains a similar situation. Her husband had grappled with the medical information given to him about her after the accident and lamented that it remained unclear and incomprehensible throughout her entire hospital stay.

Amidst the uncertainty and lack of medical consensus, my family is most distressed by not knowing if I’m being monitored or assessed sufficiently. Is anyone discussing me at a senior level? If so, are they assessing me without presumptions as to the likely outcome? They may well be. But my family just doesn’t know. Nothing is being communicated. The lack of reassurance leaves them understandably frantic. One of my sisters, a neuropsychologist, puts it beautifully, ‘We needed to know that they had her best interests at heart. You wouldn’t hand over your child unless it’s to someone who absolutely cares, and Kathleen was like a child, totally vulnerable.’