Day 14-16: A, B, C, D....

Another weekend and another quiet few days for the patients. Glad to say, Dad was looking better and better. We'd brought in some of his own pyjamas to schlep around in. The bottoms are quite short. Together with his white stockings, he actually looked like a gentleman from 18th Century England!

While I was visiting, I noticed patient B next to dad sort of signalling with his eyes. Patient B is unable to speak properly and is stuck in his chair with a pipe going into his stomach. He was trying to motion to his table. I thought I'd be a bit helpful and asked if I should move it. Unsure of the response, I moved it towards him.

He still didn't seem to be happy, so I asked one of the nurses if they could see him. The problem with aphaysia is that the other person is just guessing what is meant. And the nurses are busy. So the conversation goes something like: Nurse: "How's it going, B? Everything OK? Yes? Good." Exit nurse. The patient meanwhile is trying to signal with eyes, slight hand movements or struggling to make sounds. Patient B still didn't seem happy.

Then from behind I heard the jolly accented voice of patient A merrily saying, "A, B, C, D, E, F, G...." How bizarre. I turned around and saw him reading from the alphabet chart which usually belongs to patient B. I looked at patient B's table and saw there was a cup of water. Patient B is 'nil by mouth'. It looked like the tables had been accidentally switched. I told the nurse.

I guess it sounds quite trivial, except suppose patient B had taken the water on his table or somebody had given it to him? Nil by mouth - what a strange and slightly menacing expression.

Our consultant has been quoted giving advice on strokes in one of the national newspapers. That's reassuring!

When I put my dad to bed on Sunday night he told me to get one of the nurses to help. So I returned with one of our favourite nurses but when we got there, he was already in bed! He'd managed to clamber in by himself. He was very pleased with himself, but again, needless to say, it's a potentially dangerous situation.

On Monday, one of the physios asked if dad would like to participate in a hand 'survey' (i.e. experiment). With the proviso that no CAT scan would be involved (as they freak dad out), we think we're going to agree.

Day 13: Standing tall

For the first time since entering hospital, dad managed to fill in a menu card for himself. His choices usually run to sandwiches (dry, tired things) to beef stew. Yoghurt is a big hit. If there's not much choice due to an overabundance of pork, he'll choose 'halal' instead - usually a nice curry set meal.

Dad complained about his constant bad nights' sleep. Firstly, there's the bowels problem which can make him head off to the loo 3 or 4 times a night. Hopefully, senna will solve that. Then Patient Q has the most enormous yawns (something that my dad has since also taken up). And, grumbled my dad, patient A talks in his sleep! My dad's pretty deaf, so it's a wonder he hears him!

It looks like my dad has regained his appetite as well. He hoovered up his meal which is a welcome change from us urging spoonfuls of food towards his mouth like he's a petulant baby.

In his physio session he managed to get up off the seat by himself and stand unaided for five seconds. That was fantastic. A good day of progress.

Later, a 'liaison' nurse came to chat with my mum. Actually, she was a normal nurse but with some duties of reading out a leaflet to us about how to avoid another stroke. The basic conclusion was 'eat less salt'.

Day 12: into the bowels...

I've noticed that dad's mood varies a lot with the state of his bowels. If he's managed to go to the loo then all is well with the world. If not, it's like a black cloud spoiling the whole day. The curse of regularity methinks.

So when I visited dad this morning, he was not in a happy mood. At the hospital, they were giving him Movicol which can have quite a violent effect on the bowels. Dad's frightened that if he takes it, he'll have to rush to the loo and may not get there in time. At the moment, he needs two hefty nurses supporting him with a belt to move around and the chances of them being available when he wants are not high.

A quietly spoken Pakistani female doctor came over and softly asked my dad: "Have you opened your bowels today?" I prompted her to speak louder for Dad's deafness. She repeated the question slightly louder, but dad was still not getting it. Finally, she shouted, "Have you done a poo today?" Dad was prescribed the more gentler senna for his constipation.

In the afternoon, we wheeled dad down into the bowels of the hospital. As part of the thigh stockings 'experiment' (or 'survey' as they like to call it), dad gets 2 leg scans done to check for clots. In the dimly lighted ultrascan room, cold gel was put on dad's leg and an instrument resembling a shaver was pressed quite hard against his skin. On the screen a grainy black and white image appeared which I could not make head or tail of. A splash of colour was added and alternate pulses of red and blue flashed up - I guess the ebb and flow of blood through the vessels.

Anyhow, pleased to report dad had the all clear. He's now begun to memorise telephone numbers to keep his mind busy - yep, it can get pretty boring in the hospital.

Day 11: Changing beds

After my dad's fall the previous evening, when he'd promised not to tell my mother, of course I told her myself. In the morning, my dad called us to say that they'd changed his bed again. "OK," my mum said, "don't worry. Meimei [i.e. me] is coming."

"No, meimei doesn't want to come," said my dad.

"What do you mean meimei doesn't want to come?"

"Last night, she made me fall down." Honestly. What loyalty is there?

So anyhow, I turned up at the hospital to find that Dad had swapped beds with patient J and was on the window side with the most amazing view of London that any flat-buying yuppie would kill for. Apparently that morning was the ward round and dad showed off his walking skills to the chief consultant. After a brief discussion with the physio, it was decided he should swap beds. The nurse thinks its to give him more walking practice when he wants to go to the loo. Or maybe he would simply benefit from the sunshine and view more. Patient J doesn't say much and is a bit oblivous to it all to be frank.

At dinner time, my husband came down to visit. Having not seen my dad for over a week, he was very impressed with dad's progress. Colour in his cheeks, less wobbly on his feet, good mood... we took dad down to the canteen where he munched some of my pizza. A woman in an electric wheelchair - the ones that look a bit like comfy scooters - was seated nearby. "Go ask her how much her wheelchair costs," dad urged. I didn't dare! Dad is stuck on the idea that he'll need a new bed with special bending functions just like his hospital one; that he'll need a nice sun lounger to lie on at home in front of the telly; and that he will need a wheelchair and wants an electric one.

The reality is that the flat's way too small to accommodate such stuff unless my dad - a serial junk and toffa collector - declutters big time. As for the wheelchair, the aim will always be to avoid using one and encourage him to gain as much independence as possible...

Day 10: Lean on me - not!

Dad had 2 occupational therapists to help him this morning. They were teaching him how to shave and clean his dentures. They said he was doing OK. Unbalanced of course and a tendency to do everything with his right side. They asked me to bring in some of his own clothes. I don't know why I didn't think of it already. The bogey-green pyjamas he's been given are way too big and usually one of the popper buttons does not work properly (and usually it is the waistband).

At lunchtime, we went to the day room to try out some specialised utensils. It was a bit of a party actually with patient A (98 years old he told everybody) and patient Q (probably a third of that age) also partaking. The utensils are really very clever and so commonsense. For example, grip mats to stop plates sliding, thick handled knives and forks for unmovable hands, walls around plates to prevent mess.

In the afternoon I brought two of dad's old friends over to see him. They were just passing through London and were not expecting to see my dad in the hospital. Dad was quite perky with them and smartly dressed. We met up in the hospital canteen - for some reason I didn't want them to go upto the ward.

I smuggled up some pizza for dad's dinner. Afterwards, just as a friend was visitng patient Q opposite, dad said very loudly "I can't control my bowels!" I quickly entailed the help of a nurse to get him wheeled to the loo, then watched over him as he did his business. Job completed, I then tried to help dad back into the wheelchair. At the same time as he was standing up and leaning on me, the wheelchair's brakes were not fully on. I was shouting 'wait! wait!' as he moved towards the unsteady chair with me trying to support his deadweight and then the next thing I knew, he was slipping from me and he slowly tumbled to the floor.

The toilet floor is pretty hard and cold. He banged his leg and hip but was okay. The nurses helped me get him up again, but he was rushing and grabbing at the wheelchair, not listening to our instructions which just brought me to tears. "Come on," the nurse said, "it doesn't help." So I pulled myself together and we got dad back into bed.

"Don't worry, meimei," he whispered. "I won't tell your mother or she will get angry."

Day 9: the 'what if's' again

Dad seemed to have recovered from his nasty fall and pronounced that he'd managed to pass water during the night in the manner we thought safest, i.e. lying on the bed. He was a lot perkier and ever the keen photographer, I gave him his massive, ultra-expensive Canon camera to play with. I left him by himself for literally 2 minutes, and when I got back home and replayed the card, he'd managed to take many many stealth shots of the bay and its patients. It was a little rude - they're sitting ducks and can't exactly move away or take umbridge!

Later, my mum and I saw the consultant in his weekly clinic. The good news was that the bad stroke had happened and so long as dad looked after himself, another one is not expected. His carotid artery on the right side of his neck was completely blocked up. Apparently when one side is 100% blocked, no surgery will be performed. If I understand correctly, the worst has happened and there is no point. If the artery is only partially blocked, say even 90% blocked, then surgery would be performed and probably pretty immediately. Now here comes the crappy part. "So, it's likely that had we been able to catch him earlier, we would have performed surgery and possibly this stroke could have been avoided," said the doc. Oh. I felt guilt wash over me. I should have urged dad to see the GP earlier about his eye trouble. But I had to ask. "How early are we talking about? Weeks? Months?"

The doc shifted a little uncomfortably in his chair. "Humph. Well, if we'd been able to keep the original appointment of 10 July, it's quite likely that the artery would not have been 100% blocked and we would have operated immediately." Pause. "Yes, I'm really quite angry that the notification wasn't sent out in a timely manner." In other words, an administrative cock-up now means my dad can't walk properly and can't use his left arm and has to suffer the indignities of being bossed around by nurses, peeing in his bed, falling over into his own urine....

All kinds of guilty thoughts attacked my brain. The 'what if's?' reared their ugly heads. What if I'd told dad about stroke symptons? What if mum had taken dad to the hospital when he'd had his mini-stroke? What if I'd insisted he have his carotid scan done privately much earlier instead of waiting for the NHS to get its act together? What if the consultant hadn't gone on holiday for 3 weeks? What if they had only sent out their notification first class post instead of crappy second class??!!

Ultimately though, as the doc also pointed out, we can debate the what if's till kingdom come. In the short term it won't help at all and what's happened has happened and we need to concentrate on getting dad better. Besides which, operations to unblock arteries are in themselves risky - clots can be dislodged and cause strokes anyhow.

It still sucks though.

Day 8: The first fall is the hardest

Each time I visit dad in the hospital, I never know if his mood is up or down. Today was most definitely down. As soon as I arrived, nurse E - a very refined male nurse - took me aside. "Your dad has had a little accident." Whaaat? "He had a little fall this morning, but don't worry, we're keeping an eye on him and he is fine."

Dad was most certainly not fine when I talked to him. Early in the morning, he'd taken a pee semi-standing/leaning against his bed. The bottle he'd been given was not the usual one but a shallow one - meant to be used for women in fact. Unused to the bottle, there was some 'splashback' and in attempting to prevent this, he dropped the bottle, panicked, and slipped onto the floor. According to him he lay there - in his own pee - for a while before realising that the call button was nearby. 5 minutes later a few nurses came by, not amused and far from sympathetic.

Dad was most distressed as was I. Luckily he did not bang his head on any sharp corners or break any limbs. His ongoing battle with the night nurses whom he really dislikes translated into never asking for their help. And it should also be remembered that the nurses indeed encouraged a standing/leaning position whilst peeing. Giving him a urine bottle meant for women though was just plain idiotic. I felt very useless because quite simply, who knows what goes on at night on the ward? Dad started begging for a private nurse.

I asked nurse E if he could make sure the night nurses would give the correct bottle to my dad. Nurse E told me they should know. Well obviously they didn't know! Nurse E told me if he said anything, "they will see red and it will be worse". Crikey! What were they? Witches? Nurse E said that stroke patients often fall. They think they can do what they did before, but their balance and strength is all askew. One patient had fallen over 15 times! They really should think about having softer floors, I thought.

I told my mum and brother about the incident. After the initial shock, my mum had to query hiring a private nurse. To just sit and help him pee in the middle of the night? We'd be bankrupt! Dad would just have to learn how to pee whilst lying on his side in the bed.

Later, we took dad out in to the sun. I chatted to the wife of another patient. I'd seen her many times on the ward. She said there were good days and bad days. Having family around for support was a big bonus in recovering. Her husband had now moved to a private room, but to be frank it was extremely dull and unstimulating to be away from the hubbub of the other to-ings and fro-ings in the normal ward.

Dad was in a bit of a rebellious mood in the evening. We were trying to see if he could pee on his side. He wouldn't wear his hearing aid and was not really cooperative. There was spillage and sheets had to be changed.

I fixed up the telephone by his bedside and he seemed to be slightly placated by this line to the outside world

Day 7: All quiet on the weekend front

Saturdays and Sundays are bizarrely quiet at the hospital. There are no physios exercising patients, no OTs showing them how to make a cup of tea, no consultants doing rounds, no admin staff with files. It's empty and calm.

As stated previously, there are so many uniforms in the hosptial it's difficult to know what their status is, what their role is. It might mean I end up asking a student nurse a complicated technical question, or a senior nurse for a glass of water. The hospital even has a leaflet to help you distinguish the uniforms!

I would say that 90% of the nurses here are from Africa. The NHS must be blitzing African nations to send over their English speakers and learn the joy of being an NHS nurse. Most are ladies, very tall and very strong. And it's not just one country in Africa, but all over the continent: South Africa, Nigeria, Ghana, Sierra Leone... Unfortunately my dad can hold some very outdated views on other races - something which I reckon is typical of his generation. The nurses in their turn have a tough job and a tight schedule to adhere to. It means that there can be some misunderstandings.

My dad's appetite has been appalling since the stroke. Every morning we fill in a form for the next day and there's a fair amount of choice. As a Muslim, he can also choose a special Halal curry if he likes which is very tasty. Otherwise, it's solid English/Western fare: pie and mash, fish and chips, goulash and rice, sandwiches. This lunchtime was a bit of an exception - I'd chosen Thai red chicken curry for him. He declared it "the worst meal since I've been here", but I still bullied him into eating it all.

After lunch he pointed at patient Q's bed. Next week, Patient Q is scheduled to be discharged. "When he goes, I want that bed," said dad in some superstitious feeling it would hasten his own recovery.

My mother has been giving acupuncture sessions for some time now. If I visit later in the day I could find dad with a row of needles along his arm, or at strategic points on his face. Or a bizarre vision of neat square rows on his head like some Clive Barker pinhead horror movie. But the immediate effects are quite amazing. When the needles are removed, he'll be able to lift his left arm and leg a lot higher than before. Or squeeze his hand a couple more centimetres than before. These shortterm gains last for about an hour. Encouraging to see nevertheless, and who knows what the longterm gains are?

BTW, almost forgot to mention. As it can be a struggle for patients to go to the toilet, they usually use a large plastic bottle for urinating. So far, I'd managed to get somebody to help out other than myself, but in the evening I was by myself with dad and not a nurse was to be seen so I had to help out! We were both embarrassed by it all. Later my dad would tell my brother that if it wasn't for the fact that I was already married he would never have asked me to help out - seen one, seen them all quite frankly!

Day 6: Like grandfather like granddaughter

Recovery has its good days and its bad days. In the morning, it was definitely a bad day as a lacklustre physio session resulted in blood tests, ECGs, blood pressure readings galore. A senior nurse came in to check Dad over. She wore a dark grey uniform. Honestly all these nurses and therapists have different uniforms, different colours, it's very very confusing.

As Dad ate lunch he suddenly murmured, "It hurts." What hurts??!! "When I breathe." More checks made by a nurse. After a nap, a young pretty girl came over and introduced herself as the Senior House Officer (you what?) She checked dad over then went off to get his blood results. "Quick, get my shaver!" ordered Dad, making himself more presentable to the pretty doctor. Honestly!

"Completely normal!" she said when she returned. "Your blood is completely normal. You're the only one with normal blood on this ward!" At these magic words, dad visibly perked up and felt better.

Later in the afternoon we had a surprise visit from my brother's wife and their daughter who is 9 months old. It was wonderful to see them and having a big-eyed curious baby on the ward felt amazingly fresh. The parallels between babyhood and old age are striking. Needing help to be fed, to be cleaned, to be clothed. Bouts of erratic behaviour and misunderstandings. When dad practises his walking in particular, he likes to compare himself with his granddaughter. "Just like Aimee," he'll say. Or on good days, "better than Aimee".

We all went outside to partake of sunshine and fantastic views of the city. A little freedom at last.

Day 5: Morbid thoughts

My visits to Dad start off with him beckoning to me as soon as I arrive. Some little thing will need to be done: an adjustment of a pillow, the handing over of the shaver. Then I provide Dad with his 'ents' - basically the Daily Mail with its tiresome tirades about Eastern Europeans flooding the UK. We chat a little about what has happened: has he been to the loo? did he sleep OK? Today, the occupational therapist had taken dad to the toilet and taught him how to wash himself. He was pleased at that.

But I fear that I am probably not very entertaining for him and his thoughts turned quite morbid. "Remember, don't burn me!" (a reference to Muslim burial customs), "I wish I was back in my hometown [in China]", "Get the bus to Regent's Park Mosque - they will tell you what to do." I find I am constantly saying to him, "Don't be silly!" It's a rather lame reply.

Mind you, when I look at the other patients on the ward, I have to count my lucky stars that dad's stroke was relatively minor. He's in a bay of 6 beds though there's only 5 of them there at the moment. Next to him is patient B who's stroke has left him unable to speak properly. He has an alphabet list on his table for him to spell out words. Everybody tries to guess what he mumbles out. It must be so frustrating as he knows himself what he wants to say. I never knew what 'NIL BY MOUTH' meant until I saw the sign above his bed. He can't swallow properly. No food no water should pass through his mouth.

Then near the window is patient J. His visitor: "George is coming to see you tomorrow." Patient J: "Who's George?" Visitor: "Your son!" Heartbreaking.

Patient A is a jolly enough chap. And then next to him is patient Q who must be, what forty? Forty years old and struck down by a stroke. Luckily he is in the final stages of 'recovery'. Still, it's shocking how many people and the range of ages a stroke can strike out on.

Dad had an intense physio session today. He managed to walk (supported by the physio) quite quickly halfway up the corridor. Then he went to the 'gym' to run through a series of tests: raising arms, maneouvering to sitting positions, tapping feet. Boxes were ticked accordingly. He tried so hard in the tests, his face scrunching up awfully with the effort. The session ended with him trying out a metal frame with wheels - a zimmerframe?

The intense effort exhausted him, but he'd done well. Later on, my brother and mum took him down in a wheelchair to the canteen. It was good to get out of the bay.

I had written to a couple of dad's friends to tell them what happened. One of them wrote back, pointing out how dad's vision problems were one of the earliest signs of an impending stroke. I felt guilty and cursed myself. Why hadn't I pushed dad earlier into getting it all checked out properly? NHS inefficiencies aside, why hadn't I urged a private checkup instead? I felt bad.