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.

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.

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.

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.

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.

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.

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.

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.

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.

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.