Showing posts with label Ward 16 Leicester Royal Infirmary. Show all posts
Showing posts with label Ward 16 Leicester Royal Infirmary. Show all posts

Friday, 20 August 2010

Stroke Diary (8): Caring for the Aged

'Shoot me before I get there' is the often heard plea from those in their robust, active-retired 60's, 70's or 80's. The trouble is we become aged incrementally and once there, decisions about what happens to us will fall to our relatives.
I have had close contact with a few ill, confused, very elderly women while in hospital and wanted to blog about this seperately as I have a lot to say (as ever!).
Firstly, I saw none of the neglect of elderly patients in hospital that has preoccupied the media. Particularly during the five days I spent on an acute ward, I watched and heard the nurses take painstaking care with elderly women who needed to be cleaned up, who had bed sores, who were incontinent and who were unable to feed themselves. My opinion from this limited sample of five days is that the women who were being cared for at home by a series of carers were in a worse state than those from care homes. In both hospitals, the LRI and Leicester General, no woman was ever left unfed or left soiled for any length of time.
I found it difficult to be the sole cognitively aware patient on the ward. I would have liked to have been more helpful but I'd had a stroke and it was hard for me to stop a determined patient from trying to get out of bed and escape, or to retrieve her dropped call button, to answer her repetitive questions or to call the nurse when she needed to go to the toilet. The confused elderly need more human contact than they currently get. I'm not saying it's the job of highly qualified nurses to spend their time watching old people but I'm told there are many people 'out there' who are looking for voluntary work and perhaps this may be a role for volunteers.
The confused, aged patient is rarely able to sleep, is not able to read or watch television because they are agitated. Their agitation stems from anxiety, which leads to repetitive questioning and stereotypical behaviour such as folding, sifting, sorting or hand-rubbing.
I was struck by the similarity with the behaviour of young children with autism and I feel there is much to be shared in terms of strategies. The elderly people I met would have benefitted from visual systems, for example photographs, symbols or objects e.g 'night/day','toilet','bed' to support their understanding. A visual timetable would also help, so that the sequence of the day can be made clear e.g 'first lunch (symbol), then visiting time (symbol'). Choice boards would be a good idea. 'Do you want tea (object/symbol) or coffee (object/symbol)?'
Elderly people need someone to listen to what they mean. Amidst the repetitive questions and comments without any obvious context, something is being communicated. But it needs an adult with time to sit, listen and make a guess. To help with the agitation, these patients need someone to show them pictures, to play simple games or puzzles with them, to help bring them out of their inner preoccupation. Everyone needs to avoid the relentless, forced jocularity which is often the way they are spoken to. There isn't much humour in being 95. The elderly patients didn't get the joke and nor did I.
Incontinent patients, like children who aren't yet toilet trained, need a regular toileting schedule. This wouldn't prevent all accidents but might cut down on the frequent need for cleaning-up that I observed. This would be time consuming but it could easily become just another regular procedure such as taking patients' blood pressure.
I shared some great moments with my aged companions. I enjoyed hearing their feisty answers to the competency tests ('you can stick your tongue out all you like, when's your birthday?') and struggled myself to remember the date of the end of WWII. I enjoyed sharing, at second hand, the devotion of long-term partners and their children, in particular a tiny, aged couple who couldn't bear to be separated by her illness. When he left with their children, she made repeated attempts to get off the ward using her mobile tray for support, so that she could follow him.
Every one had a complex personal story. I heard one old lady tell the staff that she had heard her baby cry after its birth and then she was told he had died. She never saw or held the baby. Being in hospital triggered this memory. Perhaps she had never spoken of it before.
I enjoyed their refusal to comply, to be meek and accepting. I watched one old lady refuse food from a spoon, then finish the meal herself as soon as the nurse was called away.
But I was relieved to get away. I found the constant worry of monitoring my companions too much. They needed more help. I was advised to draw my curtains around me, so that I couldn't see what was happening and I'm sorry to say that in the end, I did.

Sunday, 15 August 2010

Stroke Diary (4): Yet More Waiting for QMC

Now it's Wednesday 28th. July. I am left out of the ward round and no one makes eye contact. I'm an embarrassment, a shadow sitting by the window. I start to cry. I am truly miserable but also deeply frustrated. I'm a person who makes things happen. I'm good at 'kicking ass' on behalf of others. I can't believe the inaction, the poor co-ordination, the lack of energy that is the hallmark of my treatment so far. I ask a nurse if anyone is chasing up my scan? I want the telephone number of the person at QMC who is managing my case. 'I'll ring him myself', I threaten between sobs. They're desperately busy with some very sick old women who've arrived in a bad state but my distress brings some action.
A doctor appears, previously met on A&E. He's surprised I remember his name but I point out, a little sharply, that there's nothing wrong with my cognitive functions. He's clearly embarrassed that I'm still on Ward 16 and tells me he'll chase up the scan. He also says that 'nothing magic' will happen at the Stroke Unit but I'll at least get some Pysiotherapy and should get a better night's sleep. I wonder what he's getting at. Is it a warning about the Stroke Unit (don't expect much) or is he trying to make me feel better about the time I've languished on an acute ward.
I tell him about the headache at night and the nausea and he finds me some pillows. These are like gold dust. When I've asked the nurses, I've been told there are none.
I feel hopeful that I might now see some co-ordination but in the afternoon, an ambulance arrives to take me to the Stroke Unit at Leicester General. I should have allowed them to take me but I argued that I couldn't possibly go now, I was waiting for a CT Angiogram. The ambulance driver finds a nurse who explained to me, as if I was indeed cognitively impaired, that I'd had all the tests I needed, I could go. I insisted that a doctor (always pull rank) had told me that the warlords in Nottingham had requested another scan. She checked. It seems there had been a problem with my notes.
By late afternoon, I'd been wheeled back through the corridors and lifts to Radiography. I waited outside the scan room with a couple of teenage girls, the one on the trolley had taken an odd turn when they were out shopping, the other was her friend. We all sit and text. No one speaks. I noticed some pillows tucked onto a shelf and make a note to tell them back on the ward.
There is uncertainty that my canula, the awful plastic device they put into the back of your hand before any operation, will work since it was fitted in A&E several days ago and has been roughly treated by me, in my fumbled attempts to wash and dress. Thankfully, it works. I felt the dye swoosh around my veins and a prickle in my groin and my brain as it reached its target.
Later, the same doctor appears to explain that a CD of the scan has been sent to 'Nottingham' and we could expect the results tomorrow. And tomorrow, I would definitely move to the Stroke Unit.
On Thursday 29th. July, a week after the stroke, I arrive at last on the Stroke Unit after midnight. But I spend the entire day on Ward 16. An orderly teases me, because I read the Times every day. She thinks I'm pretending. I'm now a fixture, an institution.
A doctor finds me and says that 'Nottingham' can't read the CD. It's a software problem. I despair of this link with QMC. It hasn't worked for me and has prevented appropriate action. Looking at the problem from a management perspective, it's obvious that the consultation model has failed because I'm no one's responsiblity. If I was actually a patient at QMC, they would have made decisions quickly because I would have been blocking up one of their beds. In Leicester, the doctors felt no responsibility for me because I wasn't their patient.
I have not been able to organise visitors apart from my husband for a couple of days as I couldn't be sure where I would be, so I spend my time sleeping, reading and staring out the window. People say to me it would 'drive them mad' but when you're very ill, many hours can pass doing very little. Think of when you have had a bad flu and take to your bed with only Radio 4 for company. The day passes in a fog of half-remembered programmes.
That night, a Stroke consultant appears. He's the first I've met and his presence is due to a chance encounter downstairs with another doctor. He assesses me, doing the now familiar neurological tests and takes a brief history. He says he'll move me that night. The nurses say it could be any time, so I go to bed as usual. About 12.30 a.m the ambulance arrives. I'm wrapped in blankets and wheeled through the deserted hospital, past the shuttered WRVS shop and cafe, to the outside. Outside smells so raw. On the drive to the Stroke Unit, the paramedic asks me what I do 'in the real world' and tells me about his child who has seen a county educational psychologist. She's done a good job, he says. I'm pleased to be spoken to like a person rather than a patient and to hear this good report about my new team. I try to adjust my features into 'professional mode' but actually I'm exhausted.

Stroke Diary (3): Still Waiting for QMC

There is no news from Queens Medical Centre. Yesterday was Sunday, the doctors re-assure me on their ward round. Everyone will be back at work today, so we should hear something. What is the social etiquette of a ward round or nurse changeover? Should you, as patient, make eye contact, smile and nod as you are discussed? Or even chip in? Or is it more polite to stare out of the window, pretending not to hear, until you are spoken to?
Now I'm no longer on a drip, I manage a shower. It requires military planning and feels chaotic and painstakingly slow. When I drop something, the world spins when I bend to pick it up. But it's also blissful to sit down under a stream of warm water, to feel my skin prickle and relax, to smell my own, chosen bathroom lotions. It feels like an achievement. I also start going to the toilet independently, planning my route down the ward, staking out the hand holds before I set off. I crave fruit and think about mango and avocado salad with prawns. I wonder what Jamie Oliver would do with hospital food. Is there really a need for a three-course hot meal twice a day? Does anyone still eat like that?
I sit in my chair by the window, staring at the Connect Four tower that I can see from my office but from the other side. I ring work and tell them what's happened, I speak to my secretary and cancel appointments. It doesn't seem real. My mobile phone is heavy with texts. It's a struggle to answer them all. I sleep and sleep. At the end of the day, there is no word from QMC. The other patients come and go, the very elderly returned to their half-lives, the suicides restored to the life they don't want, the chronic alcoholics wasting the lives they have, the mentally unstable unwittingly destroying the lives of those who care for them.
I'm visited by Hospital Radio. I choose Ruby Tuesday by Melanie for the request show that night. Listening to Hospital Radio is free and I hear my request, 'for Morag, on Ward 16'. My TV money has run out and I'm reluctant to buy more because I'm moving on aren't I?
On Tuesday morning I hear from QMC. The doctors tell me there's nothing urgent to be done (which I guess means it's not an aneurism) but they want another scan done, this time a CT Angiogram. I can't move to the Stroke Unit until the scan has been taken. I have to wait. This is actually nonsense. I could have moved to the Stroke Unit and the scan could have been done there but I don't know this yet.
Another big step forward today; I manage to wash my hair. It's hard to believe but there's no hairdryer on the ward. I'm not allowed to use my own (brought with all my possessions in the suitcase) because patients 'musn't use their own electrical equipment'. I understand this, I know about PAT testing, but it's hard to understand that no one has thought that women patients will need a hairdryer. Here's a tip, if you're having a stroke, go to the hairdressers the day before (and get your legs waxed- those hairy legs matter to you, if not to anyone else). The matron at boarding school talked a lot of sense when she explained that clean pants were necessary every day because if we were run over by a bus, she wouldn't be shamed at the hospital.
Another patient was told off for charging her mobile phone so after dark, when the night shift starts, I secretly charge mine, hiding the charger behind the curtains. I also start to sabotage the persistent fans. Such minor rule-breaking brings a certain satisfaction.
In the event, my hair dried like a bush but the friends that visited in the afternoon were too polite to comment. They brought fruit and magazines and I let them see me walk. We talked about the nurses. Revenge is sweet.
I telephoned my potential new employer and relayed what I'd been told; the bleed is small, it might never happen again, I should make a full recovery. Since I haven't yet seen a specialist, this is only somebody's guesswork but I don't know enough to question. It's what I want to hear. She is kind, re-assuring and we agree to speak again.
By 'lights out' (optimistic since whenever a new patient appears they go back on again) I still haven't had my CT scan. That night I start to feel nauseous and the headache starts. I worry that the bleed has started again.

Stroke Diary (2): Waiting for QMC

Ward 16 was an acute ward, not somewhere patients were expected to linger. Day and night, patients arrived, were assessed and were moved on, which meant that the traffic was continuous and sleep was impossible but the interest level for an observer like me was high. Sick people arrived with their distraught families and I could listen in to what had happened and the talk of the nurses and doctors. Curtains provide only an illusion of privacy. I had no idea how sick I was. In fact, my condition was poor. I'd managed a wash by the bed but I needed help to get to the toilet. If I tried to walk alone, I swayed like a drunk and was at risk of toppling over. My head felt tight and heavy, like I'd suffered the worst flu. But I texted friends, pleased I could still do so, I slept a great deal and when awake, I eavesdropped. It was shocking but funny to hear confused, elderly Asian ladies, who otherwise needed an interpreter, telling the nurses to 'fuck off'. I also overheard a spectacular row between a teenage girl and her mother. The girl had rung one family member in the morning, to let them know she was being discharged. The message had got confused and poor mum arrived late in the afternoon, without a car, carrying a bag of things her daughter might need overnight. The air was blue.
My stay had started energetically, with an MRI scan first thing on Sunday morning 25th. July. I was impressed, recalling Gerry Robinson's television series on the NHS and how critical he had been that facilities stood idle in the evenings and at weekends. The porter was a young man who told me how he had to be busy, how he hated standing around waiting for patients. He helped me complete a questionnaire outside the scan room and I noticed that his reading skills weren't that great. On the way back to the ward, he and another porter complained above me and around me about their working conditions. I wanted to say to the lad that maybe he was lucky to have a job. He should hold onto it, see where it might lead.
Being wheeled around the hospital made me think of the many times I had energetically patrolled these corridors and drummed my toes impatiently outside the lifts, when I was the educational psychologist for the hospital school. I was glad it was the holidays. I wouldn't bump into any teachers. I didn't want to explain; not yet.
The MRI scan was less frightening than I'd expected. I was very aware of the radiographer's breath, perhaps because my sense of smell had been affected but once inside the tunnel, I found that there was a re-assuring periscope arrangement where I could see him (but not smell him). I had headphones, which played music and an alarm button if I panicked. It was noisy, exactly like a washing machine and the music didn't mask the sound but I found it helped to try and match the length of the tracks to the noise. So if the radiographer said 'here's another scan. It's very noisy and will last for four and a half minutes', I thought of it as one and a half tracks. When I came out, I suggested to the radiographer that he try to pair the length of the tracks to the scans but I don't think he got it.
Back on the ward I'd been joined by a woman I vaguely recognised. I thought she might have been on some training I'd given a few weeks before. Her husband sat with her for a while then left. The rest of the patients were elderly women or very sick Asian ladies, who all seemed to have sons who might have been models. The absence of affection struck me. No one kissed or hugged their women when they left.
It was the end of Nil By Mouth and I over-optimistically ordered lunch which I couldn't eat. But a cup of tea was wonderful. At visiting time my daughter and husband arrived and our talk was cheerful, as it so often is in hospital. I explained that I was on my way either to Queens Medical Centre (QMC) or the Stroke Unit at Leicester General. I wouldn't be on Ward 16 long. We were just 'waiting' on word from QMC.
My daughter had rushed from her home in north London as soon as she'd heard and I think it was a relief to her to see that I looked the same and could talk normally. My husband had had the task of telephoning family and friends and amidst the widespread shock, everyone wanted answers, 'how could this happen?' I had my own worries. I was between two jobs. I had resigned from one and had not yet signed a contract for the other. I was expected to deliver three days of training in early September. I had left so much work undone, including a half finished chapter of my novel. The holiday would have to be cancelled; we wouldn't be able to see our youngest son in Sri Lanka. The ordinary turn of life had been interrupted. I'd been brought to a full stop.
Later that night my husband brought the entire contents of the shower and my dressing table in a suitcase in the hope that 'some of it would do'. The senior nurse on duty sat with me for a while and told me about his family, his working hours, his staffing problems. I switched on my professional 'listening face'. I worked out how to put money into my personal T.V and watched the first episode of the new Sherlock Holmes. Later, that would seem like a heroic level of concentration. My brain was still swelling.
Meanwhile, the fans roared and open windows spilled cold night air across me as I shivered in my hard, pillowless bed. The other patients came and went. The friendly lady opposite disappeared in the middle of the night and I woke to a whole new set of companions.