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.
Wednesday, November 29, 2006
Tuesday, November 21, 2006
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...
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...
Monday, November 20, 2006
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.
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.
Monday, November 13, 2006
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.
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.
Thursday, November 09, 2006
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."
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."
Wednesday, November 08, 2006
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.
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.
Sunday, November 05, 2006
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.
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.
Thursday, November 02, 2006
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?
"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?
Wednesday, November 01, 2006
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.
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.
Saturday, October 28, 2006
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.
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.
Thursday, October 26, 2006
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.
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.
Tuesday, October 24, 2006
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.
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.
Monday, October 23, 2006
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.
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.
Friday, October 20, 2006
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.
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.
Thursday, October 05, 2006
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.
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.
Wednesday, October 04, 2006
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.
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.
Tuesday, October 03, 2006
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.
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.
Monday, October 02, 2006
Day 18: Enema hell
Warning: If you're squeamish about poo, don't read this!
This morning, the consultant on his rounds decided to give dad something 'dynamic' for his constipation. He was given an enema which - oh, I don't want to go into the details. Actually I don't know the details and I don't want to know. Suffice to say, the effects can be pretty dramatic.
I arrived to find dad sitting in his chair in his PJs. I reached over to change him. "Don't touch me!" he yelped. "I need to go to the toilet!" The next thing I knew, well there was mess everywhere: on his trousers, stockings, seat, floor... Nurse H (fairly senior) brought over a commode and for the next half hour there was spluttering and moaning of "I'm dying! I'm dying!" All this in front of the other patients, their guest and their physios. The nurse grumbled how she didn't have time to deal with this as she had soooo much paperwork. "Just let him sit there!"
Dad did feel a hell of a lot better after. I helped clean him up and Nurse H brought over a new pair of stockings. In the bay there was also nurse E, merrily eating some grapes. "Come and help me with this," ordered nurse H as she struggled to put the stockings on my dad. [The following conversation should be imagined as spoken in irate African accents].
"I'm on my break," was the reply.
"You're on your break! You already had your break! Come and help me."
"No. I had a short break and now I'm having another short break." [munch, munch].
"You can't even help me for 2 minutes with the patient?!"
Nurse E was not budging. "You!" nurse H cried at me. "Come and help me now!"
Well there is some good news. Dad has been given a provisional discharge date of 2 weeks from now. And he's also been selected for the hand massage survey and will receive 2 hours every day. That's pretty intense, but we can opt out or change whenever we like.
When I returned in the afternoon, dad's bed had been moved yet again. Luckily, he still had the window view but his Patientline TV is bust.
Dad also had a great physio session. He's pracising walking with a stick which ends in 3 legs. Sort of like Marty Crane in Frasier.
This morning, the consultant on his rounds decided to give dad something 'dynamic' for his constipation. He was given an enema which - oh, I don't want to go into the details. Actually I don't know the details and I don't want to know. Suffice to say, the effects can be pretty dramatic.
I arrived to find dad sitting in his chair in his PJs. I reached over to change him. "Don't touch me!" he yelped. "I need to go to the toilet!" The next thing I knew, well there was mess everywhere: on his trousers, stockings, seat, floor... Nurse H (fairly senior) brought over a commode and for the next half hour there was spluttering and moaning of "I'm dying! I'm dying!" All this in front of the other patients, their guest and their physios. The nurse grumbled how she didn't have time to deal with this as she had soooo much paperwork. "Just let him sit there!"
Dad did feel a hell of a lot better after. I helped clean him up and Nurse H brought over a new pair of stockings. In the bay there was also nurse E, merrily eating some grapes. "Come and help me with this," ordered nurse H as she struggled to put the stockings on my dad. [The following conversation should be imagined as spoken in irate African accents].
"I'm on my break," was the reply.
"You're on your break! You already had your break! Come and help me."
"No. I had a short break and now I'm having another short break." [munch, munch].
"You can't even help me for 2 minutes with the patient?!"
Nurse E was not budging. "You!" nurse H cried at me. "Come and help me now!"
Well there is some good news. Dad has been given a provisional discharge date of 2 weeks from now. And he's also been selected for the hand massage survey and will receive 2 hours every day. That's pretty intense, but we can opt out or change whenever we like.
When I returned in the afternoon, dad's bed had been moved yet again. Luckily, he still had the window view but his Patientline TV is bust.
Dad also had a great physio session. He's pracising walking with a stick which ends in 3 legs. Sort of like Marty Crane in Frasier.
Sunday, October 01, 2006
Day 17: What's going on?
This morning I found dad slumped in his chair, still with his pyjamas on, the curtain semi-drawn and washbowls, nappies and funny cardboard round frilled bowls on his bed (I think they're for people to puke in).
My dad had told the nurses that he didn't want to be washed until after he'd been to the loo. He described the nurses as very xiong, which roughly translates into, erm, 'ferocious'. They'd just left him there. For how long? Well, they wash the patients around 9.30 and I got in around 11.30, so hours really. I tried to tidy up his area.
The ward nurse came in - all the nurses are on madcap rotas that make not sense to me. I'd never seen this one before and she marched in with a mean scowl. She did indeed look xiong. So I had to ask very loudly, "What's going on with my dad?" She marched over, hands on hips. "He refused to wash." "So you just left him there?" "Who put the bowls on the floor?" she countered. "I did!" I snapped.
Honestly, I know they're busy. And changing adult nappies, feeding people and clearing up puke all day is lousy. But the patients are still human beings!
My dad's bowels were still bothering him. He told everybody about it, be they occupational therapists, physiotherapists, nurses, doctors, cleaners... it's a bit of an obsession.
Furthermore, dad's hearing aid is kaput. It makes everything doubly difficult.
After lunch, a lady came in to test my dad's hand ability for the experiment - whoops! sorry, survey. She made him pick up small objects, first with his right hand, then with his left. After the second object, we were soon all getting the idea - right hand good, left hand no go.
My brother came over and we wheeled my dad out of the hospital grounds. Freedom! Well we had to wheel him back of course, but just for 20 minutes, we were out of the hospital and visiting a very nice London landmark with tourists and office workers returning home. Mind you, these pavements aren't made for wheelchairs at all.
My dad had told the nurses that he didn't want to be washed until after he'd been to the loo. He described the nurses as very xiong, which roughly translates into, erm, 'ferocious'. They'd just left him there. For how long? Well, they wash the patients around 9.30 and I got in around 11.30, so hours really. I tried to tidy up his area.
The ward nurse came in - all the nurses are on madcap rotas that make not sense to me. I'd never seen this one before and she marched in with a mean scowl. She did indeed look xiong. So I had to ask very loudly, "What's going on with my dad?" She marched over, hands on hips. "He refused to wash." "So you just left him there?" "Who put the bowls on the floor?" she countered. "I did!" I snapped.
Honestly, I know they're busy. And changing adult nappies, feeding people and clearing up puke all day is lousy. But the patients are still human beings!
My dad's bowels were still bothering him. He told everybody about it, be they occupational therapists, physiotherapists, nurses, doctors, cleaners... it's a bit of an obsession.
Furthermore, dad's hearing aid is kaput. It makes everything doubly difficult.
After lunch, a lady came in to test my dad's hand ability for the experiment - whoops! sorry, survey. She made him pick up small objects, first with his right hand, then with his left. After the second object, we were soon all getting the idea - right hand good, left hand no go.
My brother came over and we wheeled my dad out of the hospital grounds. Freedom! Well we had to wheel him back of course, but just for 20 minutes, we were out of the hospital and visiting a very nice London landmark with tourists and office workers returning home. Mind you, these pavements aren't made for wheelchairs at all.
Saturday, September 30, 2006
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.
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.
Sunday, September 24, 2006
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'.
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'.
Monday, September 18, 2006
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.
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.
Sunday, September 17, 2006
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...
"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...
Wednesday, September 13, 2006
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."
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."
Sunday, September 10, 2006
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.
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.
Friday, September 08, 2006
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
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
Thursday, September 07, 2006
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!
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!
Wednesday, September 06, 2006
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.
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.
Monday, September 04, 2006
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.
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.
Sunday, August 27, 2006
Day 4: Be-stockinged
The consultant was back from his holiday so we requested a quick word after his rounds. He was a fairly hard-nosed, self-important chap who nevertheless took the time to answer our questions. Yes, Dad had had a stroke, but not a severe one. The brain scan had shown a tiny part of his brain had been affected. He should make a good recovery. And why hadn't we made our July 10th appointment? The last question was said with just a little annoyance. We explained how inefficient their 'notification' process had been.
My mum had been dying to practise some acupuncture on dad and the consultant was neither for nor against it. So she had the go-ahead.
Dad had a physio session where a nice friendly physiotherapist strapped a thick belt round dad's waist and then supported him while dad walked lopsidedly down the corridor. It was fantastic to see him moving. His left arm though was tougher work. Dad screwed his face up with the effort of trying to lift his arm.
Dad was exhausted, but there were more fun and games. We wheeled Dad down to the other side of this enormous hospital for his neck scan. This tells you how blocked up the arteries are on the sides of your neck. The results were not given to us.
In the afternoon, a chirpy young occupational therapist spoke to mum. She was responsible for helping dad do the normal, everyday things that he could do before the stroke, e.g. washing, dressing, making tea etc.
He was also dressed with thigh-high special stockings which promote the flow of blood. Like the kind of flight socks you can buy to help prevent clots forming in DVT. It's part of - well, I hesitate to use the word 'experiment', so - survey that dad has agreed to take part in. The advantage of participating is that he can have two leg scans done to check all is OK down there.
Dad was very snoozy. He hated the nights at the hospital with fellow patients sleep-talking or groaning and flourescent lights on. He didn't like the night nurses at all - they wouldn't help him take a leak. He explained that the night before, he had managed to prop himself on the bed and use the urine bottle. We thought this was a terrible idea - he wasn't steady on his feet at all and could easily fall. We voiced our concerns to the nurses about to come on night duty. "Oh it's fine!" they breezily announced. "This is a rehabilitation unit, they're supposed to do everything themselves!" But it's only like the fourth day? "Don't worry!"
With tears in his eyes, dad waved goodbye to us at the end of visiting hours.
My mum had been dying to practise some acupuncture on dad and the consultant was neither for nor against it. So she had the go-ahead.
Dad had a physio session where a nice friendly physiotherapist strapped a thick belt round dad's waist and then supported him while dad walked lopsidedly down the corridor. It was fantastic to see him moving. His left arm though was tougher work. Dad screwed his face up with the effort of trying to lift his arm.
Dad was exhausted, but there were more fun and games. We wheeled Dad down to the other side of this enormous hospital for his neck scan. This tells you how blocked up the arteries are on the sides of your neck. The results were not given to us.
In the afternoon, a chirpy young occupational therapist spoke to mum. She was responsible for helping dad do the normal, everyday things that he could do before the stroke, e.g. washing, dressing, making tea etc.
He was also dressed with thigh-high special stockings which promote the flow of blood. Like the kind of flight socks you can buy to help prevent clots forming in DVT. It's part of - well, I hesitate to use the word 'experiment', so - survey that dad has agreed to take part in. The advantage of participating is that he can have two leg scans done to check all is OK down there.
Dad was very snoozy. He hated the nights at the hospital with fellow patients sleep-talking or groaning and flourescent lights on. He didn't like the night nurses at all - they wouldn't help him take a leak. He explained that the night before, he had managed to prop himself on the bed and use the urine bottle. We thought this was a terrible idea - he wasn't steady on his feet at all and could easily fall. We voiced our concerns to the nurses about to come on night duty. "Oh it's fine!" they breezily announced. "This is a rehabilitation unit, they're supposed to do everything themselves!" But it's only like the fourth day? "Don't worry!"
With tears in his eyes, dad waved goodbye to us at the end of visiting hours.
Thursday, August 24, 2006
Day 3: At close quarters
Having spoken to my mum, the events of Saturday night / Sunday morning were filled in. My parents are divorced but live in the same flat. At around 1 or 2 a.m., my mum happened to be still awake. She could hear banging from my dad's room and on investigation, found my dad semi-out of bed, stuck there, paralysed on his left side. He'd been banging with his right hand in the hope of getting her attention. Thank God she had been awake. It took a bit of time to get through to the ambulance services, but once contacted, they came like lightning and dad was taken to accident & emergency where all kinds of tests were done on him and he was diagnosed with having suffered a stroke...
On day 3, I had my first chance to visit my dad as a proper visitor (i.e. not an emotional wreck). My mother and I marched straight to his bay to find... an empty, tidy bed. My stomach wobbled thinking the worst and frantically found a nurse to ask where dad was. "Oh, he's been moved next door I think." Well, he had been moved but to two bays down. In fact he was the first patient you could see when you entered the ward and I had indeed seen a very shrunken figure out of the corner of my eye. I hadn't realised it was actually dad - I'd walked straight past him.
"Where have you been?" He was panicky. He was moved but nobody had told him why. We think it was because his condition had stabilised so he did not need to be in the 'intensive' bay.
We helped feed him his lunch. He didn't eat much and drank even less. Stroke victims often have difficulty swallowing. Everytime he drank water, he would cough, sometimes very harshly. It's scary. The flip side of drinking liquids is the wee-wee aspect. He'd been given a nappy to wear, but in fact he could control his bladder. He had to use a long-necked plastic bottle to pee, and needed help to do this. So a combination of fear of choking and embarrassment in urinating meant he refused to drink much no matter how much we nagged him.
My dad is a keen photographer so I'd brought in his camera for him to play with. I took a picture of him as a record. He didn't look as pale as before, but still droopy on the left hand side. When he saw the picture, he wagged his finger at it and said, "I hate you!"
I left for lunch and on my return, found him very pleased with himself. Two physiotherapists had taken him for a 'walk' around the ward. I'd missed it! After that, he was very snoozy and dozed on his seat in a rather lopsided position.
It felt good for me to be actually doing something, even if it was just sitting beside him.
On day 3, I had my first chance to visit my dad as a proper visitor (i.e. not an emotional wreck). My mother and I marched straight to his bay to find... an empty, tidy bed. My stomach wobbled thinking the worst and frantically found a nurse to ask where dad was. "Oh, he's been moved next door I think." Well, he had been moved but to two bays down. In fact he was the first patient you could see when you entered the ward and I had indeed seen a very shrunken figure out of the corner of my eye. I hadn't realised it was actually dad - I'd walked straight past him.
"Where have you been?" He was panicky. He was moved but nobody had told him why. We think it was because his condition had stabilised so he did not need to be in the 'intensive' bay.
We helped feed him his lunch. He didn't eat much and drank even less. Stroke victims often have difficulty swallowing. Everytime he drank water, he would cough, sometimes very harshly. It's scary. The flip side of drinking liquids is the wee-wee aspect. He'd been given a nappy to wear, but in fact he could control his bladder. He had to use a long-necked plastic bottle to pee, and needed help to do this. So a combination of fear of choking and embarrassment in urinating meant he refused to drink much no matter how much we nagged him.
My dad is a keen photographer so I'd brought in his camera for him to play with. I took a picture of him as a record. He didn't look as pale as before, but still droopy on the left hand side. When he saw the picture, he wagged his finger at it and said, "I hate you!"
I left for lunch and on my return, found him very pleased with himself. Two physiotherapists had taken him for a 'walk' around the ward. I'd missed it! After that, he was very snoozy and dozed on his seat in a rather lopsided position.
It felt good for me to be actually doing something, even if it was just sitting beside him.
Wednesday, August 23, 2006
Day 2: Back in the UK
Throughout the interminable flight back to the UK, I watched film after film after film. Anything to keep my mind off the "what if's", the hoping that I would get back in time. We landed pretty smoothly and my brother was there to meet us.
He did an amazing job at preparing me, regaling me with funny stories about the hospital combined with snip bits of vital information. Dad had had a blood clot stroke, would probably have to stay in hospital for many weeks. I was not to be alarmed when I saw him - he would be pale and seem very fragile. Then my brother would tell me about the nurses and how my dad was flirting with the pretty ones, the hospital with its fantastic view, the volunteer 'reader' trying to shout out a poem to a stone-deaf patient, how my dad was suspicious of the nurses taking his DNA when they were swabbing out his mouth...
We drove straight to the hospital and my brother led us to the specialist ward. It was past visiting hours and there was a quiet calm about the hospital and the ward. A smell of disinfectant, some nurses lounging about, patients at rest trying to recover. My brother steamed into the last bay breezily greeting my dad, and then I followed in after. We were both so happy to see each other! A huge relief swept over me. My dad got very emotional then and we both started crying. He was much more paler than before and the left side of his face was droopy and expressionless. My brother manoevered him like a child into a more straight lying position.
But mentally, he was more lucid than ever. He recounted how good my mum and brother had been, but now he felt 'safe'. He told me that he'd been for a brain scan and as he went into the 'tunnel' he felt like he was dead, as if in a coffin, and then how he'd been left in the accident and emergency ward with all the terribly injured people and he was so scared because nobody was taking him back to the ward and were ignoring him. He told me that some of the nurses were 'rude'. "They're trying to make you better," my brother said, "try to be nice to them."
It was time to go. I think we both felt so much better for having seen each other.
He did an amazing job at preparing me, regaling me with funny stories about the hospital combined with snip bits of vital information. Dad had had a blood clot stroke, would probably have to stay in hospital for many weeks. I was not to be alarmed when I saw him - he would be pale and seem very fragile. Then my brother would tell me about the nurses and how my dad was flirting with the pretty ones, the hospital with its fantastic view, the volunteer 'reader' trying to shout out a poem to a stone-deaf patient, how my dad was suspicious of the nurses taking his DNA when they were swabbing out his mouth...
We drove straight to the hospital and my brother led us to the specialist ward. It was past visiting hours and there was a quiet calm about the hospital and the ward. A smell of disinfectant, some nurses lounging about, patients at rest trying to recover. My brother steamed into the last bay breezily greeting my dad, and then I followed in after. We were both so happy to see each other! A huge relief swept over me. My dad got very emotional then and we both started crying. He was much more paler than before and the left side of his face was droopy and expressionless. My brother manoevered him like a child into a more straight lying position.
But mentally, he was more lucid than ever. He recounted how good my mum and brother had been, but now he felt 'safe'. He told me that he'd been for a brain scan and as he went into the 'tunnel' he felt like he was dead, as if in a coffin, and then how he'd been left in the accident and emergency ward with all the terribly injured people and he was so scared because nobody was taking him back to the ward and were ignoring him. He told me that some of the nurses were 'rude'. "They're trying to make you better," my brother said, "try to be nice to them."
It was time to go. I think we both felt so much better for having seen each other.
Monday, August 21, 2006
Day 1: A phone call in a Phnom Penh supermarket
I was in a supermarket in Phnom Penh. It was 11.30 am Cambodia time when my mobile rang. It was my mother and I remember thinking, "Silly, we arranged the call for the afternoon", when it hit me it must be 4 o'clock in the morning her time, and something was very very wrong.
My dad had had another turn. If the effects last for more than 24 hours, it's officially a stroke. He was paralysed down the left side but could still speak and was still mentally aware. She'd tell me more later but she had to get some sleep.
In a daze, I called my husband and ... continued shopping in the supermarket. What else could I do? I went back to the flat and that's when I started crying. How serious was it? Would I be able to get back to the UK in time to see him again? My husband immediately took control of the situation and organised our flight tickets, passport return (at the agents for visa purposes) and insurance, whilst trying to comfort me at the same time. It being a Sunday made things doubly difficult, but he was a star, and ran around the city managing everything.
Ironically, we had already bought tickets to return to the UK in August, and were already thinking of leaving our flat in Phnom Penh. "If you want to busy yourself," he said, "start packing". So inbetween sobbing incontrollably, I packed everything.
Later, I skyped my mum and brother. They were very upbeat - but I think that was more for my benefit. My dad was OK - still the same person. Just unable to move his left side. He was very grumpy about being in hospital but had had roast beef for dinner and liked that. He did have the indignity of wearing a "nappy" however. "Don't worry, don't cry, sweetheart," my brother said. He never calls me "sweetheart".
I didn't get much sleep that night. I felt sick and prayed to God to please let me see my dad, please help him get better. I realised that crying didn't help anybody. It was hard to stop, but I tried.
My dad had had another turn. If the effects last for more than 24 hours, it's officially a stroke. He was paralysed down the left side but could still speak and was still mentally aware. She'd tell me more later but she had to get some sleep.
In a daze, I called my husband and ... continued shopping in the supermarket. What else could I do? I went back to the flat and that's when I started crying. How serious was it? Would I be able to get back to the UK in time to see him again? My husband immediately took control of the situation and organised our flight tickets, passport return (at the agents for visa purposes) and insurance, whilst trying to comfort me at the same time. It being a Sunday made things doubly difficult, but he was a star, and ran around the city managing everything.
Ironically, we had already bought tickets to return to the UK in August, and were already thinking of leaving our flat in Phnom Penh. "If you want to busy yourself," he said, "start packing". So inbetween sobbing incontrollably, I packed everything.
Later, I skyped my mum and brother. They were very upbeat - but I think that was more for my benefit. My dad was OK - still the same person. Just unable to move his left side. He was very grumpy about being in hospital but had had roast beef for dinner and liked that. He did have the indignity of wearing a "nappy" however. "Don't worry, don't cry, sweetheart," my brother said. He never calls me "sweetheart".
I didn't get much sleep that night. I felt sick and prayed to God to please let me see my dad, please help him get better. I realised that crying didn't help anybody. It was hard to stop, but I tried.
Saturday, August 19, 2006
Fate?
I don't want to be seen to be exploiting my dad's predicament. But it's dominating huge chunks of my life at the moment. And maybe it might be useful for others...
There seem to be so many threads which have conspired together leading up to my dad's stroke. There are a lot of 'what if's?', guilt, responsibility, and plain administrative muck-ups, which make me feel sometimes that is was fate, unavoidable, inevitable.
Yet there are also a fair few 'thank God for....' feelings sprinkled around.
My dad is a robust Chinese man in his 80s - often mistaken for somebody 20 years younger. He has high blood pressure and cholesterol but wasn't taking any medicine for it. About 6 or more months ago, my dad complained of blurred vision. He usually suffers from migraines anyway so nobody paid much attention. The opticians said he it was cataracts but we sensed that wasn't the real problem.
Then I read somewhere that blurred vision - especially in one eye - could be a sympton of an impending stroke. My heart skipped a little yet at the same time, there was a sense of denial: no, not my dad... But I did mention it to my mum over the phone. So she made him see the doctor... who referred him to an eye specialist.
As this is the NHS, these type of appointments take weeks, if not months, to get scheduled in. The eye specialist confirmed it was not cataracts that were the problem, but not enough blood getting to the eye. A referral for a special scan was needed. There was a three month waiting list.
At the end of June, my dad collapsed on the floor at home. He couldn't move but could still speak. My mum found him and made some phonecalls, unsure what exactly to do. But 20 minutes later, he simply got up himself. The doctor came round to take a look. It was a mini-stroke (Transient Ischaemic Attack). The doctor would hasten the special scan appointment.
My dad was extremely tired and would get dizzy when he went out. A full-on stroke is very likely to follow a mini-stroke so my mum harrassed the hospital for the appointment. The reply was always the same: we would be notified. I ordered my mum to start investigating getting this scan done privately.
Well, we were notified. In a combination of administrative cock-up and late postal services on 10 July at 1.30 pm we received a letter from the hospital saying that our appointment was for... 10 July, 1.30 pm. No, the hospital said, they could not fit us in until the 31st July. The consultant was on holiday.
On the 23rd July, I got the dreaded phonecall. My dad was in hospital having suffered a stroke...
There seem to be so many threads which have conspired together leading up to my dad's stroke. There are a lot of 'what if's?', guilt, responsibility, and plain administrative muck-ups, which make me feel sometimes that is was fate, unavoidable, inevitable.
Yet there are also a fair few 'thank God for....' feelings sprinkled around.
My dad is a robust Chinese man in his 80s - often mistaken for somebody 20 years younger. He has high blood pressure and cholesterol but wasn't taking any medicine for it. About 6 or more months ago, my dad complained of blurred vision. He usually suffers from migraines anyway so nobody paid much attention. The opticians said he it was cataracts but we sensed that wasn't the real problem.
Then I read somewhere that blurred vision - especially in one eye - could be a sympton of an impending stroke. My heart skipped a little yet at the same time, there was a sense of denial: no, not my dad... But I did mention it to my mum over the phone. So she made him see the doctor... who referred him to an eye specialist.
As this is the NHS, these type of appointments take weeks, if not months, to get scheduled in. The eye specialist confirmed it was not cataracts that were the problem, but not enough blood getting to the eye. A referral for a special scan was needed. There was a three month waiting list.
At the end of June, my dad collapsed on the floor at home. He couldn't move but could still speak. My mum found him and made some phonecalls, unsure what exactly to do. But 20 minutes later, he simply got up himself. The doctor came round to take a look. It was a mini-stroke (Transient Ischaemic Attack). The doctor would hasten the special scan appointment.
My dad was extremely tired and would get dizzy when he went out. A full-on stroke is very likely to follow a mini-stroke so my mum harrassed the hospital for the appointment. The reply was always the same: we would be notified. I ordered my mum to start investigating getting this scan done privately.
Well, we were notified. In a combination of administrative cock-up and late postal services on 10 July at 1.30 pm we received a letter from the hospital saying that our appointment was for... 10 July, 1.30 pm. No, the hospital said, they could not fit us in until the 31st July. The consultant was on holiday.
On the 23rd July, I got the dreaded phonecall. My dad was in hospital having suffered a stroke...
Friday, August 18, 2006
Introduction
My dad had a stroke.
It happened.
This is his tale of recovery told from his daughter's point of view.
Some of it isn't pretty.
It happened.
This is his tale of recovery told from his daughter's point of view.
Some of it isn't pretty.
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