Wednesday, November 29, 2006

Day 48: Keep the pressure up

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

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

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

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

- deadened taste buds
It happens.

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

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

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

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...

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.

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.

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."

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.

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.

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?

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.