Standing Up. Vicki Steggall
hospital from the airport. ‘I got the shock of my life. It was about two days after Kathleen’s stroke. She was in intensive care with half her head shaved, tubes everywhere, linked up to machines. It was an incredible shock to see a woman who always had thick lustrous hair, lying there with electrodes everywhere. But, as serious as it was, when she saw me walking towards her and recognised me, her eyes lit up. She knew I was there.’ Miraculously, I also begin to speak a few words. Watching this prompts my family to put even more effort into helping me recover quickly. They stay by my side, talk to me, to the nurses and to each other. They are wonderful. Nobody could ask for more.
They also read what they can about my condition, but find useful information elusive. Often they feel they are working on their own, without the assistance they need at this critical time. Petrina decides she must spend as much time as possible with me. That way, she will hear the decisions as they’re being made and see the doctors’ faces. Her aim is to monitor the medical side of my situation. She asks the nurses many questions and, by her own admission, really grills the doctors. She knows that you might miss out if you’re not there at the times of the doctors’ rounds.
Petrina becomes the conduit between that medical information and the family, who wait for her explanations. One very good intern tries everything he can to relay what the medical team think and answer questions. But he is one person. The lack of ongoing information is a constant anxiety. What is discussed this week no longer feels adequate the next. They want to know that everyone is on the same page, that they’ve been heard, that I’m being constantly reviewed and considered in light of my changes.
And the changes appear quickly. My early burst of communication ebbs, to be replaced with silence and weak response. I am moved into a high dependency unit, one step down from intensive care, but still with full time observation and care. But to everyone’s dismay, my level of consciousness remains low. My brother-in-law Mark notices nurses having to pinch me and thump heavily on my chest to arouse me. What has happened? Petrina notices a link between my level of responsiveness and the temporary shunt, which was inserted during surgery, being clamped off. ‘Kathleen would be responding to commands such as “move your hands”, maybe even talking a little and then they’d clamp off the tube and she’d go flat as pressure built up in her brain,’ she recalls. ‘I noticed this a couple of times — it seemed very marked to me.’
She speaks to the nursing staff to find out why it is being closed off but emerges from the conversations ‘never totally sure of their explanation.’ She decides to ring the neurosurgeon directly, and soon after a second craniotomy is performed, in which a permanent shunt is installed.
‘It wouldn’t be normal to call him,’ says Petrina. ‘The only reason I could speak to him was that I was a GP, I think. Kathleen was also feverish and, after having the infectious diseases people look at her, they decided it was ventriculitis, which is inflammation or infection of the ventricles of the brain.’ After treatment with antibiotics, I start to improve.
The bed next to mine is occupied by a noisy and emotionally disinhibited man, who is testing everyone’s patience. When nurses come to ask me questions designed to assess my level of awareness, he cheerfully takes it upon himself to answer on my behalf. When they ask if I know where I am, he answers loudly through the curtains, ‘Royal Melbourne Hospital.’
All I have to do is repeat his answers, which is easy for me, but makes it hard for anyone to get a private word or sense of my true state. He also starts bombarding nurses with obscene suggestions and captures my family visitors with questions on their lives and past. One day, after some of his more trying interjections I have a rare moment of lucidity. I turn to my visitor, who happens to be my future son-in-law, Richard, and tell him, quite clearly, that he has my permission to punch my neighbour’s lights out!
But it’s a rare moment. My conscious state remains impaired — a possible side effect of the surgery they are told, or maybe my extreme tiredness is simply a part of the normal process of haemorrhagic stroke. They just don’t know.
By the time I move into the stroke unit, I am rarely speaking. My brother-in-law Mark recalls the situation. ‘We were working on the today, the here and now, working out who was going to be sitting with Kathleen. This consumed our time. And we were all doing our own homework, trying to put the pieces of the jigsaw together, talking to colleagues. Really trying to understand what the hell was going on.’
The stroke unit
I remember on the stroke unit, feeling so relieved my family waskeeping vigil. My brother-in-law Mark was there almost everyday, as were my sisters. I couldn’t communicate with themmuch, but there was great comfort from their presence, lots ofhugs, kisses and touch. Kathleen
When the person you love is unconscious, and you’re not sure if it’s part of their recovery or part of their deterioration, what do you do? This is the situation that faced my family: the first phase of the waiting game where the future unfolds slowly and uncertainly.
They decide the best way is to ensure that everything humanly possible is done to aid my recovery. Whatever is happening inside my brain is opaque to everyone, but who knows what will tip the balance? Perhaps just being there, watching, able to intervene when needed, any small action, may be the one revealed as having been important.
Their mission is to be with me, to make sure that someone is by my side during as many daylight hours as possible. Of course they want to be there, but there’s a practical purpose too, watching over my care, speaking to medical staff, observing my progress and encouraging my recovery in every way possible. They create a system of continuous practical and emotional support.
It takes a bit of organisation. At first, family members arrive and sometimes need to stay in the waiting room while others are with me. An orderly process is needed to ensure it all works efficiently and it is my future son-in-law, Richard, who comes up with the idea of an internet-based roster. This roster becomes the communications lifeline of the family, allowing people to slot in the times they’re available and see at a glance when others are here with me.
It is also the basis for rapid feedback. Did Kathleen speak this afternoon? What did she say? Was there any improvement? What are the doctors saying? Any grains of information are eagerly sought and shared, allowing those like my daughter Emma, in Warrnambool with a young family, to be part of the care even from home. Every weekend she drives to Melbourne. ‘When such big things are happening in the family, we all really just wanted to be together. For me that wasn’t possible, other than on weekends. So what really helped, apart from being physically present, were the constant emails and texts that kept us all up-to-date.’
Lucinda recalls being surprised by how much time everyone wanted to put in. ‘To be with her was incredibly important for everyone. We wanted to have someone with her, keeping watch. To enable that, we sent constant emails back and forth, reporting every day on what had happened, what the latest was.’
They persist, but generally receive little response from me for their efforts. Their presence was a huge comfort, even though I couldn’t say at what level I was conscious of it. I may have appeared unresponsive, yet my dominant memory is of their care and comfort. It was a critical part of coming back to myself again.
Mark, who just happened not to be working during these hospital weeks and who lived nearby, spent many hours with me as part of the family schedule. Knowing how gregarious I am and how much I love people, gardens and the sunlight, he decided, one day, to take me out of the hospital to experience those things again. Getting out will do me good!
‘I felt Kathleen needed to get out, get some sunshine,’ he recounts. ‘She had metal stitches in her head but I thought I’ll take her out along Sydney Road. I put her in her wheelchair, wrapped a sheet over her and off we set, out along Royal Parade, left into Story Street, Park Drive and back along Flemington Road and Grattan Street. We were both a bit daunted. I took a white hospital blanket with me and I can