Standing Up. Vicki Steggall
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 family’s efforts, I remain difficult to rouse in the weeks after surgery. My frequent sighing, big deep sighs, alerts my family to the possibility that I might be depressed and I start being given anti-depressant medication which is known to improve the outcome in stroke. Hoists are needed to move me about and I’m fed through a naso-gastric tube.
I am clearly the most incapacitated of all the patients in the stroke unit. My family, as they walk past the now familiar surrounds of ICU, still feel some measure of comfort that I have at least progressed beyond that balance between life and death. But why have I stopped talking? Why am I non-responsive?
When I do wake, I’m frequently very distressed, but unable to tell anyone why. Everyone’s relief following surgery, when I was blithely issuing instructions (albeit written), and then my spoken (albeit confused) words in the high dependency unit, gives way to real concern over my continuing muteness. Answers are hard to find. My neuropsychologist sister recalls, ‘No-one ever came out and said, the reason Kathleen isn’t talking is … A speech therapist thought she might have oral apraxia (an inability to speak due to damage to the brain) but they didn’t seem to really know.’
The speech therapist, acting on this assumption, tries to teach me to copy sounds. But the decision to treat my silence as apraxia seems misguided to my sister. Increasingly, and in consultation with her peers, she believes my problem is due to disruption of deep centres in the brain and their cortical connections, and that lack of speech was due to my general problems of arousal. ‘Really, we can now see the reason Kathleen wasn’t talking was because she’d had a massive stroke and her brain was so addled. Even though she should have been talking (because she had a right side stroke and language is in the left hemisphere), there just wasn’t enough cerebral activation going on for her to be having these higher-level cognitive processes. She was in survival mode. Her brain and body were just focusing on bodily functions.’
She believes I would benefit from neuropsychological involvement. Looking back at that time, she says, ‘Neuropsychological involvement in the stroke unit would have been so helpful to guide the therapy, support the family and advocate for Kathleen. Kathleen was getting nursing care, including physiotherapy (around support and endurance for sitting), occupational therapy (for one-handed strategies for grooming and starting to scan to the left) and speech therapy (for lip sealing and swallowing). But a neuropsychologist would have helped make sure that what was being done was most beneficial.
‘For example, given Kathleen’s lack of speech and her left-side neglect, we developed our own communication device — a list of single words, such as yes, no, headache which we wrote in a column on the right side of the page for Kathleen to point to. We needed a way of understanding the reasons behind her frequent and obvious distress so that we could help. She was able to use this simple device with some success.’
‘We can say this with some clarity now, but when you’re in the thick of it, you’ve got questions and there are no answers. Sometimes that’s because there are no answers, or there is no access to people who may have the answers. Really, the staff are trying to put the pieces together themselves and even those who were really well intentioned saw it as their duty, I think, to keep us grounded. Things were bad and were going to stay bad for a very long time, if not forever. Their main focus, as they saw it, was to not raise our expectations. But that didn’t help us at all.’
Other people’s modest expectations have to be brushed aside if my family are to believe I will get through this. And that is what they do. Guided by their own inner convictions and knowledge of what a determined survivor I’ve been all my life, they get on with providing me the company and stimulation they think I need. They chat away to me, even though I don’t reply. They talk, letting me know they’re there. In my memory (and it’s backed up by email correspondence), they are always there.
Mark found the best way to communicate during my silence was to sit by my bedside and simply embark on a monologue of his own. It was his brand of cheerful companionship,