hear someone say that my daughter Lucinda is on her way. Terry Dwyer’s colleague had phoned her. My other daughter Emma, who lives away from Melbourne, is being told, as are my four sisters and their families. I sense the shock I have just injected into their day but I long to see them. Knowing they’re on their way comforts me like a lifeline through my fog of fear.
But the early stage of stroke is an endless cycle of panic. Nobody knows what is happening or where it will end. The emergency team clusters around. I keep telling myself — and them — that it’s just another silly dizzy spell. Do these people know who I am? Am I sure I do? And, foolishly but insistently, the thought keeps badgering me, who will tell my appointments for tomorrow that I may not be there?
I am helpless as a child, unable to save myself as if I was drowning alone in the ocean. The tides of fate are washing over me and unseen forces are in control. I, who have always prided myself on being the person in command, now scarcely know where I am. My head aches and my left arm seems, painfully, to be out of my control. I’m dizzy and nauseous and I still can’t see properly. The noise is terrifying; people shouting, machines beeping, things banging and distress all around. Surrounded by strangers, I desperately need someone who knows me.
‘Not For Resuscitation’
No amount of education prepares you for the moment whenyou’re told that your loved family member has had a stroke. Orfor the moment when medical authorities tell you to preparefor the worst, and it seems like you are absolutely withoutany power, without volition. Fate is in the driving seat. Whatshould a family do? Accept uncertainty or get involved? Lucinda
As phones ring, the news of my admission spreads in my family. Shocked, they make their way towards the hospital. Unlike me, they know this isn’t just another dizzy spell, but it’s too early to know how serious it is. My family contains educated, articulate people. Some of them also have medical training, but faced with this situation they are just like any other family; caught off guard, they’re launched into a world they are not prepared for and have little real idea about. They are stunned by the extent to which this proves to be the case.
It now becomes their story, at least for the next few weeks and months. I’ve pieced it together from what they have told me since, from their memories and emails they sent to each other in that time. When my memories do intrude, they are often nightmarish, with only a slim connection to reality. But to me, that was reality. I’ve never felt so sure about reality since.
What they have to say makes me uneasy, even after all this time. They suffered, and I suffer for what they went through, for the anguish that I can’t help feeling responsible for. Part of my recovery will be coming to terms with this, and part of their recovery will be assimilating what happened and adjusting.
At the time of my admission, my family consisted of my parents, my two daughters, Emma and Lucinda, and my four sisters. They and their partners were to be my lifeline (not that I was always conscious of the fact) for the next few weeks and then beyond into the years ahead. But as they made their way to the hospital, they could not have known the sort of journey they were in for and what would be asked of them. None of us could have foreseen it.
When my daughter Lucinda reaches the hospital, she desperately tries to get into the emergency ward to see me, but is stopped by the triage nurse who tells her to wait in line. Through the window behind her, Lucinda can see me and explains to the nurse that she is terrified that her mother is about to die. She is told to wait yet again. The nurse turns back to the elderly man who is arguing about his bill, a controversy that seems to be going in circles. After some time, other people also queuing for triage see her distress at not being allowed to get through. So she can get to me, they stand aside to offer her their place in the queue.
In the ward, there is little time for family members to face their own shock and grief. My condition has started to deteriorate. When I was first admitted, the nurse had asked me my weight and I’d quipped ‘too much’. But I’m now beyond humour and my speech is slurred. I’m frightened and not always sure that my family really is here with me or if I just think they are. I drift in and out of consciousness.
In truth, I’m in more need of help than a busy ward can offer. My family is left on its own in the vast, crowded emergency department, trying to bolster each other, and keep me calm, all the while wondering what’s in store. As someone recalls, ‘Things seemed to be becoming very dire indeed. There were hours of confusion for the family, and decreasing consciousness for Kathleen. It was all very negative and confused.’
They are kept busy, gratefully drawing on the nursing skills of my sister to ensure I’m receiving basic care. When I vomit, they clear my mouth and wipe my face, placing me on my side so I don’t choke. My mouth is terribly dry and they moisten it with a large swab, but my thirst is unquenchable. I reach out and grab the swab from them, then start sawing it in and out so clumsily they have to take it away from me. When I’m able to, I ask questions they don’t know the answers to. In the face of my increasing fear (‘What’s happening? I don’t know what’s happening!’) they have nothing to calm me with other than their presence.
What I don’t know is that the results are coming in from my scan. My ‘dizzy spell’ is a major right haemorrhagic stroke, a particularly dangerous medical scenario which few survive. The CT scan describes it as ‘a large right sided intracranial haemorrhage extending from the basal ganglia through the centrum semiovale. Within this there is a central spherical 2x2cm hypodensity, possibly hyperacute non-clotted blood or a mass legion. There is intraventricular extension. There is mass effect of 7mm of midline shift and effacement of the anterior horn of the right lateral ventricle. The temporal horn of the left lateral ventricle is prominent and may represent early hydrocephalus. Periventricular white matter low attenuation is consistent with chronic small vessel ischaemic change.’
Stroke occurs four times more frequently in the left cerebral hemisphere than the right, and 83 per cent of strokes are ischaemic, that is, caused by a blood clot blocking the blood and oxygen flow to the cells. So the fact that I have a right side haemorrhagic stroke, with blood flooding into the brain from a ruptured blood vessel, means that my stroke is significantly more serious and less predictable than most.
By the time my sister Petrina, a general practitioner, arrives, the other family members have been taken into a room with the neurology registrar. This is the long awaited moment, when answers are expected. What they hear shocks them. Petrina explains:
I arrived to a number of people sitting in a meeting with the neurology registrar. He was midway into explaining to the family members, that Kathleen had had a stroke, that it was haemorrhagic and they weren’t going to operate. He showed us the scan so we could see where the haemorrhage was. I knew, as a doctor, that this was not good news. If it had been a blockage, they would have been able to give her medication to dissolve the clot.
To our shock, the registrar then started to have a NFR (Not For Resuscitation) discussion with us. I was very surprised. It was not really a discussion but presented to us as a fait accompli. He told us that given the size of the haemorrhage, should she survive, Kathleen would be unlikely to have any quality of life. She would either be very dependent and live in a nursing home or else live the rest of her life in a highly vegetative state.
We were not being consulted at all. It sounded like a decision had been made somewhere and it was being presented to us – like he was paying lip service to us in the consultation. I felt totally disempowered by the way he put it.
Petrina realises that this is a critical moment in my care — as indeed it turns out to be. Unable to speak for myself, she feels the need to speak on my behalf, saying, ‘I don’t suppose this will make any difference, but Kathleen is a very strong person, connected, warm, loving, intelligent, resourceful. She’s still young and I don’t think she’s finished living yet.’ And he did seem to take a step back at that point,