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.

Stroke Diary (6): The Stroke Unit

On Monday 2nd. August I meet another group of professionals, the Occupational Therapists. I'm invited to Breakfast Club, where the patients make tea, toast and wash up. Fortunately, I'm fine at all of this. I'd really like an assessment of my writing and I.T skills but I guess I can sort that out for myself at home. The O.T's and Physios are kind, enthusiastic and fun and it's good to have hot toast and apricot jam instead of cold, chewy toast and marmalade. I am a little uncomfortable being assessed, even though there are lots of jokes and laughter, and I resolve to review policy on observations of children once I'm back at work. I wonder what children who are old enough to be aware that they're being observed feel about it? I remember observing a four year old with autism at his playgroup. I followed him around the activities with a clipboard, recording his attempts at social interaction and his use of language. I turned round to find him following me with a clipboard, carefully making marks on paper and wearing a pair of toy glasses from the dressing up box. Touche!
I meet four different consultants while I'm on the Stroke Unit and each has a slightly different take on my case. I'm warned there may be no answers, that my cerebellar haemorrhage may be 'just one of those things'. That will be difficult to accept. I want an answer. If I don't know why it happened then how can I prevent another?
The ward round has a standard format. The consultants are usually very busy, having rushed from a meeting or an urgent case and are dependent upon a junior doctor to interpret the file notes from any previous consultation. They're also able to refer to a computer on a trolley which shows them the patients' brain scans. I'd love to see my own brain but I don't ask. They seem so busy, I don't want to hold things up. I'm reminded of the importance of a good file note, which should include a very brief summary of any conversation and a few clear action points. I'll go back over this with my current team and hopefully my new team.
I ask again about whether there are any results from 'Nottingham' and the junior doctor is asked to chase this up. Later in the day, I'm told that another CT Angiogram has been organised.
I'm not too well. I have headaches and nausea and I feel ill all day. If I turn my head sharply the world spins like a top. I report this but the consultants don't seem worried. It's like watching the stewards on a flight. If they're still walking up the aisle, serving coffee and chatting during tubulance then nothing can be wrong, can it? If the consultants aren't worried, then I won't be either. Maybe this is 'normal'?
Apart from Breakfast Club and the excitement of the ward round I sleep. I wake and find a friend from work has left me a book. It's by a Jamaican author, Margaret Cezair-Thompson and is her first novel. Once I'm feeling better I'm quickly absorbed by it. In The Pirate's Daughter, she skillfully creates the world of Jamaica in the 1950's to the 1970's, weaving historical events and the lives of real people into an intriguing fictional plot.
My young 'ward-mate' makes a fantastic recovery and is soon ready to go home. I'm delighted for her but envious. I remind myself that she's probably twenty years younger than me. I'm left with three confused, elderly women. The fact that they're all probably forty years older than me makes my stroke seem more abhorrent. Despite the posters on the corridor that say stroke can happen at any age, there isn't much evidence of this on the wards.

Stroke Diary (5) : The Stroke Unit

Friday 30th. July: Ward 8 of the Stroke Unit was a very different place from an acute ward. I arrived late to a quiet, darkened, sleeping environment. I noticed that one of the nurses was a nun, wearing a wimple identical to the headscarf worn by the muslim nurses. Religious women have always covered their heads, I thought.
At breakfast, I hankered for the bran flakes and banana offered at the LRI. The only wholegrain cereal on offer was Weetabix, which required immediate sitting up and alertness to avoid a soggy mess.
The others in the four bedded ward were two elderly women and one young girl, who seemed very ill. On the first morning I met Professor R (no first names here) who gave me practical advice about a phased return to work and when I could expect to drive again. I explained my jobs dilemma and he reassured me that I would be well enough to take up my new post. I tell him about the CT Angiogram, taken two days before and that I'm 'waiting on results' from QMC. He doesn't seem aware of this and says that they have all the facilities to do their own tests and have a direct computer link with QMC. So why did I spend five days in the LRI?
I start Physiotherapy. The Physios all seem to be tall, slim, good looking and shining with health, like an advert for Switzerland or Nike. My walking and balance skills are assessed and I go to the Physiotherapists 'gym' session, which is a circuit of mobility and hand-eye coordination activities. I'm not too bad at the hand-eye stuff but rubbish at the mobility tasks, particularly weaving between cones. I'd certainly be picked out by the police for a breath test if I was spotted walking from my car.
In the afternoon, it's visiting time. Friends and family bring the outside with them and the ward is transformed from it's habitual quiet, somnolent state. I think about how much the cards, flowers, visits, texts and phone calls have mattered to me. I resolve to try to be more caring in future. A nurse comes onto the ward and says my mother has telephoned. I can see she's laughing and I can imagine why.
Then it's the weekend and not much happens medically. The ritual of meals becomes important as the staff who bring around the tea, who take orders for food and who serve the meals seem to have more time to talk. From this, I learn that the focus of everyone on the staff is the move of the entire Stroke Unit to the LRI next week. It seems that long term working relationships are to be disrupted and it has been hard to organise work rotas around the move. This is the only time I see any person, staff or patient, show any emotion.
My eldest son comes for the weekend and makes himself useful at home by running errands and visiting me on Saturday afternoon. One of the few benefits of my situation is to have a 'one to one' with my son and I don't waste it. The next day, I am struck by the incongruity of the partnerships that can arise from hospital visiting as my son, my sister and a work colleague share a conversation around my bed.
Around ward routines and visiting, I sleep or read. My companions are not able to watch television, so ours is thankfully off. I can't imagine watching a whole programme as I did last Sunday. In some respects I'm improving but in the brain department things seem to be worse.