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 recall thinking how easy it was to do a runner with an RMH patient — no-one challenged me when we left the ward or the hospital entrance. I could have taken her anywhere!
‘It was quite a struggle holding on in the downhill stretch along Park Drive — it was hard work and at one stage I thought I was going to lose her! But I had her laughing. She always had a great sense of humour and she responded to that and she enjoyed the warmth of the sun on her body so much that we did this on most visits.’ Even now, the image of both us as escapees, with Mark struggling behind my runaway wheelchair, makes me laugh.
But these adventures were an exciting interlude in the midst of not very much. ‘There were many times we sat around holding her hand and feeling a bit useless,’ one of my sisters recalls. Most visits are simply about keeping vigil while I sleep. They try speaking to me, sometimes massaging my left side, rubbing my skin with moisturisers and repositioning me as I constantly slump to the right, as a result of paralysis down my left side. They also try straightening my left arm, fingers and leg to prevent them getting contractures. Sometimes they read to me. Later, when my naso-gastric tube is removed, they help me eat.
They watch the nursing. Knowing the nurses are pressed for time (that’s the system), they try to make sure I’m not too adversely affected. They have plenty of opportunities. One day, after a gap in the roster, Petrina and Gordon arrive to find me sitting in a chair and realise I’ve been in it for six hours. I’d been forgotten. Only when told do the nurses realise their mistake. I’m being encouraged to sit up by the physios, but this marathon has left me exhausted. It reinforces everyone’s belief that without a strong family presence and advocacy, I’m unlikely to recover as well as I could.
‘It’s being there to watch these things, to swab her mouth, or to call the nurses and say it really is time to change that incontinence pad,’ one of my sisters, a nurse herself, explains. She speaks to the unit manager about my level of nursing, feeling some of it is substandard, but aware of how short-staffed these places are. Her desire for me to be kept dry, hydrated and comfortable seems fairly basic, but often proves elusive.
In fact, just ensuring that I’m kept dry while incontinent is a major concern. I’ve always been a person of great dignity, fastidious in dress and grooming. In the face of many unthinking violations of my dignity they ask, ‘Why should personal dignity matter less after a stroke?’ When I’m slowly regaining continence, I ask the nurse to bring me a bedpan, but she’s busy so shouts over to me, ‘Just do it in the bed.’ It was one occasion, but we were all shocked.
My family ensures that curtains are pulled around when I’m being undressed and that my incontinence is attended to quickly. ‘It was a huge thing — making sure Kathleen was changed regularly,’ Emma recalls. ‘Some weekends I’d drive all the way down to see her and she’d be in and out of consciousness and none the wiser that I’d been there. But it was important to me to ensure that the care, especially around dignity, was there when she needed it. It felt really important to be there, and keep reminding them of her need for dignity.’
Dignity involves many things. My inability to govern my own behaviour raises issues regarding visits from friends and colleagues, as I yawn widely without covering my mouth and I don’t notice when my clothing slips. I am what is known as disinhibited following the trauma to my brain. Given a choice, I wouldn’t want anyone to see me like this.
They make a difficult decision, based on my best interests, and firmly request no visits from friends and colleagues. Instead, they keep them informed by text, phone and email. They explain, ‘We felt part of our vigilance was to protect Kathleen from visitors, other than close family and her closest friends.’ For several weeks they field calls and queries (constantly, according to Lucinda), but they know I’m not ready yet to see people. It’s a decision that’s validated when one person turns up to see me just as I’m pulling my clothes off.
Friends and colleagues quickly adjust, respecting the family decision and not wanting to add to Lucinda and Emma’s burdens. They appreciate the information and calls they receive and await the day I’ll be well enough to see them. In time, they too will play a critical role in my recovery.
More silence
Despite my
