Day 56-58: KFC yum!

Physio J says if dad's on the waiting list for wheelchairs, it will take bleeding ages ('bleeding' being my adjective, not hers). So, have to start looking for one now. Ebay seems to have loads.

Today, dad begged me again to get him some KFC. So, I got a takeaway - a 2 piece meal my personal fave. He pronounced it the best meal he'd had since leaving the hospital. Blimey, sod healthy eating or pure foods. It must be the grease.

I also took dad to see the GP who was all bright and breezy (though I'd've liked to have asked him why he didn't refer dad to see a specialist earlier rather than pursuing clueless opticians). He didn't tell us anything we didn't already know. Just kept the meds going and told dad to have regular bloodtests for cholosterol.

Getting there and back was a pain. A cool £6 each way by black cab and it's only down the road. What a rip-off taxis are.

Day 51 - 55: what's an organism?

I went away for a few days up north to see my husband. For many weeks now we've been living apart, him back at his dad's and me back down here in London. He's been very understanding about the situation, but now and then has to remind me that I'm a wife as well as a daughter.

When I came back, dad was OK. The following day he was quite depressed - "melancholy" is how he put it - and just watched TV. Everyday he takes senna so that he can go to the loo in the morning. If he can't go, he'll grab a suppository. Can't be good for you taking laxatives every day.

But then the day after there was a huge difference. We went for lunch at Nandos and then grabbed a trolley at Sainsburys which dad used for steadying himself around the store. He loved being there and filled the trolley with loads of goodies - which I had to put a halt to or I'd never've been able to get them home.

Later, he internetted and went to the Stroke Association site. There was a Q & A session where somebody had written: "my doctor has told me I cannot have another orgasm or it could bring another stroke". My dad read out the question to me, except he pronounced 'orgasm' as 'organism', then innocently asked what the question meant.

Actually, I think he knew precisely what it meant - so mischievous.

Day 49-50: so snoozy

Umm, obviously this blog does not take place in real time. Been a bit busy, but determined to carry on now.

Dad's arm and finger movements are extremely limited and he is exhausted after doing requisite exercises. It takes a huge amount of effort from him. How much is the physio stuff really helping?

Yesterday, our care manager came in. He's a nice enough bloke but not actually from the UK and not long in the job. Upshot, he doesn't really know what we're entitled to and what's out there. Luckily physio J knows quite a bit, so she offers a lot of info to us.

I'm a bit worried about what will happen in the future. Husband will not want to stay much longer in the UK and if dad is by himself, he'll be lonely and bored. I asked J about day care centres. She said that it might be a bit 'slow' for him, i.e. the old people there were, well, pretty old and to be blunt, some were a little senile. Probably not a great environment for him to be in.

At least while I'm here I can clear out the clutter in the flat. Dad's a great hoarder of toffa. We tackled the plug and leads box today. How many cut off wires do you need exactly? He really really didn't want to throw anything away.

Day 48: Keep the pressure up

Our new weekday carer came this morning. Another Nigerian lady - they must monopolise the carers in this borough - with beautiful braids and a broad smile. I liked her, but Dad was so-so. Probably because she told him to say "please" and "thank you" which he hardly ever does.

I decided to heed my husband's advice and take it easy. Hey presto! We had an enjoyable day. I took dad to the hospital (a pricey 10 quid minicab ride) for the stroke clinic where we were seen by a senior stroke nurse and a brain specialist.

- blurred vision
The nurse and doctor put our minds at rest about dad's blurry right eye. They did not think another stroke was imminent as he was taking preventative medicine now. Their conclusion was that when dad exerts himself too much, not enough blood was reaching his right eye (now that his right carotid is blocked). There was an operation which could help bypass the blockage but this would do nothing to help dad's eye. "Sounds perverse," the doctor said, "but make sure he doesn't take any medicine to lower his blood pressure." In other words, blood pressure should be normal, even highish, so that blood can circulate as much as possible and circumvent the blockage.

- swollen hand
They would send an odema (very tight fitting rubber) glove.

- deadened taste buds
It happens.

- depression
Very common. As it was not wild mood swings, we just have to keep an eye on it.

We were much relieved after the visit. We took the bus home. The busstop is not far but seemed like a marathon for dad. It was the furthest he'd walked since his stroke. He did so well, but I really think we'll need a wheelchair in future as it was completely exhausting.

Got an Indian takeaway for dinner as a mini-celebration. Poor dad - still can't taste a thing.

Day 46-47: Fish and Chips

Dad's been pleading for us to take him to Chinatown which would be a trip and a half! So we compromised and went to the fish restaurant a short bus-ride away. Dad managed to walk to the busstop and then when we arrived, walked from the busstop to the restaurant. He needed to pause a few times and we had to support him under his right arm as he used his left hand with his walking stick, but he did well. I guess more than anything, it's just getting out of the flat which is the key achievement.

We have a different carer come in on the weekends. She's also from Nigeria and is very placid, taking her time with dad so he doesn't feel rushed.

Today, dad started to use cook lunch for himself. Dangerous! Cooking one handed and unbalanced with a gas fire and a wok full of hot oil...and as his tastebuds have gone to pot, he throws in loads of stockcubes into everything. I have to nag at him and shout at him and runaround after him. But of course, I should be more patient and try to enjoy the time I have with him. Everytime I shout at him, dad sits down in his seat, grabs his yellow clipboard and writes everything down in Chinese...

Day 44-45: Dizzy

I'm a terrible person. I'm horrible. I get so impatient with dad and mad at him for silly things like making a mess cos he can't eat properly. I'm evil and hate myself. I seriously need to chill out. I'm just not cut out for looking after dad.

He's been complaining of strange eye problems again, just in his right one, like before the stroke. That's damn scary. The physio came to see us twice in one day - she's great. She's taught dad how to sit and stand properly, new exercises for his pelvis and hands. She advised me to call the GP about dad's eye symptons and even went back to the office and sent me loads of info about stroke symptons from the web.

So I've been ringing the GP who are way too busy to even call back. The surgery manager suggests I take dad to A&E. Dad refuses to go - he hated it there, all the tests and prodding. I called up the hospital. They also suggested A&E "if you're worried," but in the end, asked us to come in on Monday for a special outpatient stroke clinic. We've decided to wait till Monday then, see how his right eye goes.

Day 43: why is God punishing me?

Last night, I awoke again at 3.30 am but for no reason and frustratingly could not get back to sleep for 2 hours. I keep thinking I hear Dad falling!

After the carer left this morning, Dad complained that he didn't like her. She was too rough and too rushed, he said. He felt unsafe. He wanted me to call the council to get her changed. I didn't know what to do. As my husband put it, "I don't think the basis of free healthcare is whether or not you get along with that person."

In the end though I did call the council and they were quite happy to change the carer for next week. Let's see what happens.

Later, two physios came. They were very good, especially physio J who listened carefully to what dad had to say and (very important this) spoke extremely clearly for him. Regarding dad's swollen hand, she said she sees it often in stroke patients and not much can be done. It's caused by the inactivity of the hand, of the muscles. Massage helps, but the best thing is to keep the arm or hand up (like in a sling) and try to use it as much as possible. If possible.

She gave my dad some exercises to practise, to stretch the arm muscles and promote some use in the hand. A lack of muscle usage could lead to them constricting and once constricted - well she seemed to be saying they don't go back. Scary.

The reason the physios were here was to actually run a series of tests on dad to see what he was or was not capable of and which areas to work on. His left side has a tendency to collapse, for which the right side compensates greatly. Of course the best is to try to get as much balance as possible.

I made lunch under dad's tuition, but his tastebuds failed him again. This happened again at dinnertime and he fell into a lacklustre mood. He asks, "Why is God torturing me?" and gets depressed. I know that this is partly a sympton of stroke, but I also feel that in many ways, dad is incredibly lucky. When I think about some of the other stroke patients in the hospital who can't eat or drink, who can't speak or see, who are incontinent... there's a lot I wish dad was more thankful for. I wish I could lend a more sympathetic ear to dad.

Day 42: I am Boots

Boom boom! Boom boom boom! Thumping in my dream. Boom boom! Suddenly I was wide awake and sprang out of bed. It was 3.30 am and I ran towards the toilet - no nothing. Then to my dad's room. No, nothing?! Back to the toilet and there was dad sat on the ground. "Oh, did you hear me?" he asked all matter-of-fact? Well, I guess so! Though I wonder how long he'd been there. He'd lost his balance whilst trying to reach the toilet. I pulled him onto his feet and then took him back to his bedroom. It was hard to get back to sleep.

In the morning, I met dad's carer who helps him wash. I have to be frank here: she was a real miserable character - grumpy, taciturn and unpleasant. I really tried to engage her in conversation, honestly! But she obviously didn't want to be friendly, plainly disliked her job. Crumbs, isn't a stroke difficult enough without waking up to this misery? She made dad his breakfast and then as son as he'd finished, she whipped the cereal bowl away. Dad is not enamoured with her.

I accompanied dad out of our council flat block, through the estate and down to the shops. He walked ok with me supporting one side and his aluminium stick on the other. We bought Dad's favourite Daily Mail. On the way back, we met a woman with a walking stick and Dad engaged her in conversation. She told him that her friend had had a stroke and only now, after three months, can she start to move her fingers. That gave some hope to Dad.

He was very tired after the walk. He likes to sit on the balcony to catch the afternoon sun.

I cooked dinner which my husband wolfed down. But dad's taste buds have somehow been deadened. All the food he was looking forward to eating has become plain, boring. This deepens his depression.

We laid out Dad's medicines. In the morning he takes 75mg aspirin, an anti-clotting drug, and something to line his stomach against the aspirin. In the evening, he takes senna, the anti-clotting drug again, and 40mg of simavastatin (for cholesterol lowering). He also takes some Chinese fungi medicine. "I am like a pharmacy," dad commented. "I am Boots."

Day 38-41: swollen hands

Arrived back from France. My mum had left that day for a much needed break. I found my dad ensconced in front of the telly. It was strange - dad didn't seem to be particularly pleased to see me. Maybe he, too, felt I should have been around for when he first came back home. He was tired.

Also, he probably thought that once he was home, everything would be perfect. He would feel better, he would recover quickly, there would be lots for him to do. So when things don't turn out that way, it can be disappointing.

His left hand is quite swollen. It actually looks more healthy than his other hand - it's fatter, the skin is tighter. But it's unnatural and we're not sure what to do about it. I reckon that the hand massage therapy probably kept the swelling at bay whilst he was in the hospital, but here - well, there's simply no time to give 2 hours of massage a day.

My brother and his daughter were over and we had dinner together with my brother's wife. That cheered my dad up.

Day 37: Brother

Still in France. Spoke to mum and guess what? My dad's younger brother in Chengdu - at the same time as my dad was in hospital - had a problem with his speech. Some kind of impediment which has cleared up now, but could it have been a minor stroke? His family never told us. I guess they didn't want us to be doubly worried. My uncle also suffers from the same eye problems that my dad had before his stroke. He should have a check up but I wonder how good Chinese hospitals are?

At least mum and dad sounded more chirpy on the phone. Dad had lost the depressed, sleepy tone of yesterday and told me about the carer who had come this morning to help him wash. She was from Nigeria. Some pople had also come from social services to check that the carer was OK. Dad also had some equipment delivered to help him around the house: two high stools with a slightly angled seat, a frame around the toilet, and a bench across the bath.

I'm impressed by the co-ordination of care: the equipment sent in on time, the carer put in place on time... but I have a feeling we are extremely lucky to live in the borough that we do.

Day 36: Losing it!

Sometimes ignorance is bliss, especially when abroad and far away from home affairs. Been enjoying my time in France, but had niggling worries about dad. Phoning in on the day dad got discharged certainly brought home affairs racing back to me.

"I'm sorry," mum said, not sounding sorry at all. "But I lost my temper with your father today." Apparently, she had skipped lunch and fetched him from the hospital. As soon as he got home, dad wanted to watch his DVDs on the telly and was reaching forward to fiddle with something, and fell onto the floor. That's when my mum screamed at him for being so selfish, for not just waiting and being patient, for just want to watch his DVD ("may as well be back in the hospital!"). She began throwing things, breaking my dad's headphones and even - oh dear - a photo of their beloved grandchild.

I talked to dad. He sounded terrible. Tired and expressionless. I felt terrible too. How could I leave just as dad was getting out of hospital? How could I leave mum to cope by herself?

Day 32-35: bye bye hoppy

It was the Friday before the long weekend and I realised, as I was leaving the hospital, that it would be the last time I saw all the working-week staff: physios, OTs, secretaries, etc.

Throughout the long weekend very little happened. It was even quieter than a normal weekend. On Sunday, dad told me he could not sleep at night. He was so excited at coming home. He didn't want to complain about anything in case it affected his leaving date.

He did have indigestion though. A nurse came round to give him an ECG. I watched as she labouriously placed sticky tabs on my dad's chest, consulting a diagram as she went. Then a more senior nurse came over and moved all the tabs on to different places. "Look at the diagram next time!" she told the other nurse.

There was nothing unusual in his ECG and so dad relaxed. I left him at the end of visiting hours. I would be in France by the time dad was discharged. I silently said goodbye to the hospital, thanking it for its help but very glad not to see it again.

Day 31: Home Visit

This morning, dad came home for a brief visit. It was wonderful to see him out of the hospital and in his familiar environment. He came with physio O. She wanted to examine the flat, see if any equipment or changes need to be made.

Dad was like a monkey. He sat in his normal swing armchair and grabbed this and that, making things fall. He ordered me to fetch his camera to take a record of proceedings. With remarkable efficiency, a care worker from the council also came by - a nice young man. He'd be helping dad rehabilitate after being discharged.

Dad asked for hand rails to be put along the flat corridor, and for a mini wheelchair to wheel him along. Yet if he relies on such aides, our worry would be that he would not practise and keep up his walking.

Mum got very irritable with dad at some points during his visit. She raised her voice. It made dad sad. I've decided to still go to France. I need to spend time with my husband. And who knows, the hospital may delay dad's leaving again. But Mum is under terrific strain in these weird circumstances, and Dad needs such support. I don't know what to do.

Day 30: All the ward's a stage

It was doctor's rounds today and the consultant made dad walk for him. So there were all the patients in the bay, the nurses, physios and junior doctors watching dad - "like an actor in a play," he related - as dad walked the length of the bay, trying so hard, walked back and then at the last moment, sort of stumbled back into his chair.

He felt that the consultant was disappointed in him and would now definitely keep him in hospital for one week longer. Actually, the decision was already taken. Dad's new physio - a nice, young chap - said he'd done really well.

At lunchtime, I took dad for a walk downstairs, loosely keeping hold of his belt. I should have known better though. Weekday lunchtimes are manic at the hospital with throngs of employees, patients and visitors. Dad was overwhelmed. We took refuge in the hospital gift shop. "This hospital saved my life," dad told the lady at the cash register. He bought a book about the hospital to show a bit of appreciation.

There's an old lady in the stroke ward who keeps wandering around at breakneck speed. She loves exploring and the nurses chase after her to prevent her entering restricted areas. She also likes coming into my dad's bay, sometimes sitting down and staring - bit spooky. Maybe she used to sleep here. Dad said that last night, she'd wandered over to patient T's bed, sat there and then held his hand! And patient T could do nothing except stare back at her!

Mum found out that two of the other patients in the bay were originally heart attack victims. They were having heart surgery when they had 'mild' strokes due to dislodgement of clots. How awful! The double whammy of suffering heart and brain attacks.

Day 29: Complaints!

It's been almost a month now since dad had his stroke. Neither of us were in the best of moods. When I arrived, he told me that he hadn't wanted a wash again that morning until after he'd been to the loo. The two nurses had been 'very rude', he said and he'd mentioned this to the physio M who massages his hands. Physio M immediately went to the head nurse who made the two nurses come over and apologise to dad. "I was very embarrassed," he told me.

I'm not sure what to make of this. I feel a bit mad at myself for not complaining myself when my dad claimed the nurses had been rude. On the other hand, didn't one of the nicer nurses tell me that to complain would make it hell for us? The flip side is that my dad's bad hearing and - I have to be frank - a tendency towards stubborness, can cause a whole host of misunderstandings, of perceived rudenesses on both sides.

Dad was also mad at me for mentioning his 'blurred vision' to the doctor. He doesn't want them told because he "would rather die than stay here any longer."

I went back home to clean the place up. Dad's due for a home visit with the OT soon, plus somebody from the council is coming to assess his needs. It's all very new to us this.

Mum told me later that Dad had passed a physio test. He now had 'Ind.' written on his physio chart - if he wants to, he can walk around independently without anybody helping him! This is fantastic news to round off a rather strange day.

Day 28: Are you happy to be alive?

Dad has settled into his new ward okay. Since he's been at the hospital, four fellow patients have been discharged on their road to recovery. Dad's bed is next to patient J - he's a quiet soul. He has trouble walking due to fluid in his legs. Every morning his daughter visits him and every evening his son.

There are three 'new' patients. One of them has only one leg (maybe lost through diabetes?) - he and his visitor wife are exceedingly aimiable. Another guy keeps his eyes closed all the time. In fact, he can't raise his eyelids. If they are opened, he gets dizzy. Poor guy. Strokes affect people in so many different ways. The last patient has some blotches on his face - he's very quiet too.

There is one other patient opposite dad whom I've not yet mentioned. Let's call him patient T. He's a youngish chap - well probably around forty. He doesn't say much at all, although he is probably 6 weeks into recovery now. As soon as his girlfriend arrives, she wheels him out of the bay. He watches telly a lot.

Today, the young Pakistani doctor came round, drew the curtains around T's bed and started talking. There really isn't much privacy on the bays so every word could be heard - and she was speaking very loudly. Maybe she's too used to speaking to my dad! "How do you feel?" she bellowed. "Are you happy to be alive? Do you ever get the feeling that life's not worth living?"

I relate this semi-comically, but of course it's not funny. He mumbled some answers and I think maybe he got counselling later. But depression is very common among stroke patients, including dad. I'm not sure how to handle it.

Day 26-27: Impatient line

After yesterday's moodiness, dad felt a bit better today. He realised that he needed to apologise to my mum for refusing her acupuncture treatment and upsetting her. He was very sleepy. Nothing much happened during the day, and then just after dinner, dad's bed was moved again, without warning, just shift the furniture and go! Apparently the ratio of men to women stroke patients determines the changing of bays. I guess I can understand that but nobody explains this to you unless you ask. And just after dinner when patients begin snoozing... not the best time is it?

The following day, I rushed dad down from the bay into the lobby area so we could make a phone call to his relatives in Chengdu. Dad's very close to his younger brother but both are both terribly deaf. So conversations tend to be loud and between other relatives. Anyhow, after the call, dad got very emotional and cried and cried and couldn't stop. I tried to comfort him. He told me he just had to let it out.

Once back in the bay much frustration ensued with Patientline - the crappy 'providers' of bedside TV. Maybe we should be grateful that this hospital is advanced enough to have such facilities, but when clients get consistently wound up by shoddy service and rude telephone operators, is it worth it? Basically, our previous bedside unit had cocked up and they owed us some money. The new bedside unit - whilst having nothing wrong with it - would not work because we had complained about the old bedside unit. When it did start showing something, it claimed we had no pennies in our account and trying to get their 'client service' to reimburse us was like getting blood out of a stone. Whenever a repair person actually comes up to your bedside physically, inevitably they'll say there is nothing they can do here, they have to go back to their 'office'.

I was very ready to give up on the whole sorry business, but M - one of the very nice nurses on the ward - decided to help us out. She phoned Patientline and basically harangued them mercilessly until they crumbled. "Don't you think patients are under enough stress and have enough worries without dealing with your service?" What a good point. With her help we managed to get the 48 hours of TV that we were owed. So I told dad to stop watching his DVD!

M told us that Patientline used to be good at the beginning. They cleaned and checked all the units and provided excellent service. But later it just fell apart and they didn't seem to care anymore. Other patients and relatives also complained. For example, one nice trick they like to do is make you buy pre-paid cards. If the amount left falls below a minimum, you have to buy another card as the old one won't work. So you lose out what is left and end up with dozens of cards with amounts of cash left on. You have to phone them to get reimbursed on this. How crap! It's perverse, taking advantage of people who are poorly.

Day 25: rollercoaster

Dad's day started very well today as he had an OT session with occupational therapist O. She's a tiny girl and I don't know where she finds the strength to support and help partially disabled people. Dad was wheeled to the other side of the hospital to a tiny kitchen area with fabulous views of London. He made me a cup of tea, himself a cup of coffee and one slice of toast. He did a great job.

However, O said that they were going to delay dad's departure by another week. This badly coincides with a trip to France I have to make but more importantly, dad is desperate to get out of the hospital. The reason for the delay was because they want his walking to be a lot better. And the previous day's mental tests had shown up some holes. Poor short term memory apparently. And 'safety' issues. The latter I can well understand as a habit of grabbing at things and an impatient demeanour are not assets when dealing with disability.

After lunch, dad urged me to get a young Chinese girl who's a doctor. He experiences bouts of dizziness, especially when he raises his head. The Chinese girl asked if I was 'BBC' i.e. British Born Chinese. Yes. So am I, she told me. She suggested my dad have blood pressure tests when sitting and standing. I'm pretty sure that's not the problem but far be it for me to contradict the expert. She was very nice and said to him, "You're just like my dad!"

I tried to tell dad about the delay in his departure but apparently he did not think I was serious. Later, when mum had explained, his mood plummetted. He refused to have acupuncture and refused to eat. To prove his ability, he got up and tried to take a few steps unaided to the window - despite our protestations. He almost fell down and we had to catch him. We were all - pardon my French - mightily pissed off with that.

Day 23-24: a mental test

On my return to London I went straight to the hospital to find dad in fine spirits. He eagerly filled me in on the weekend's events and proudly showed me his DVD player. One of the reasons why we were a little reluctant to get him one was the lack of security at the hospital. Honestly, you can walk in off the street, take a lift, and really be as opportunist as you like. Very rarely will anyone challenge you.

Anyhow, it's only a cheapie DVD player. And it gives him a bit of happiness.

The occupational therapist also gave my dad some mental exercises to do. Testing on events, memorising numbers. That kind of thing. I guess to check if he is muddled in any way. To be frank, dad's sharper now than he was before. Maybe cos there are less distractions for him.

Dad is now allowed to goto the gym with one of us and try out some physio exercises. He has one where he goes on his toes, another where he steps up and steps down. He walked backwards and at one point, walked forwards without any help - no support, no stick, nothing! "You're better than Aimee [his granddaughter]!" my brother said. At which point, dad broke down in tears - am not sure what kind of emotion he was feeling. Relief or despair?

The following day, 2 people came in from Patientline to check the TV screens of the beds opposite. Dad's TV screen has been bust since he arrived at his new bed a week or so ago. When I reminded them that our screen was also awaiting repair they said we weren't on the list! They did try to fix it and we ended up with a very yellow screen. We paid up for another 24 hours telly, and then 20 minutes later, all the screens in the whole ward crashed!

Spoke to the lady physio who massages my dad's hands today. They are researching if hand massage makes any difference to arm/hand recovery in stroke patients. Dad has 2 hours massage every day, broken up in 30-40 minute segments. It takes up a lot of time ("no time for his acupuncture sessions" my mum grumbled), but it's beneficial for sure. Straight after massage, dad's hand can grip pretty well. The effects do wear off though.

Anyhow, she told me that physios are having a tough time in the UK at the moment. There's been a freeze on promotions and there's no new openings so nobody's career is progressing. It must be quite demoralising for them.

Day 19-22: questions ad nauseum

Dad was looking a lot better on Thursday. Within the space of an hour there, I was accosted by three different people asking exactly the same questions about my dad. First the physio, then the doctor, then the nurse. It was all about living conditions, who would be caring for my dad when he left hospital, what kind of help we'd need from social services.

It was pretty annoying as my answers were not going to change in the 10 minute intervals between each questioning session. On the other hand, it should be a relief in a way that social services may be getting involved. My mum ended up filling out a rehabilitation form with questions such as: "Will you need help with laundry?" It's quite hard now to envisage what help we'll need - it depends so much on dad's recovery. But we will need help.

Speaking of recovery, dad took a few steps with no support. It was wonderful! And then on Friday, he had a new physio who spoke very clearly for him. She was hardly supporting dad at all with the belt as he pottered carefully along the corridor with a light walking stick. She even made me have a go at semi-supporting him so that he could practise walking when the physios aren't around.

I finally managed to spend the weekend with my husband up in York. Dad knew I wouldn't be around to visit and with the TV on the blink, he begged for us to get a portable DVD player. On Saturday, my brother relented. And mum brought over a very long running Chinese soap opera on DVD. He's absolutely addicted now.

My mum's acupuncture needles didn't seem to be finding the right qi. An acquaintance with more years of experience came down and inserted extremely long needles, especially into the sole of the foot. Behind the drawn curtains my dad yelped terribly. The other people on the ward must have thought he was being tortured.