Simon had a quiet afternoon, a little less chatty than yesterday, and he said he wasn't feeling so well. This didn't stop him from wolfing down a chocolate mousse, and a brie sandwich. There was a bit more movement on his ward today, Rick, was moved opposite him. I think this is good because Rick is quite alert, and Simon can see all of the things that he might be able to do a little way down the track. There is a new man, Lorenzo in the next bed and Paul who is still very sleepy. Half the ward is now Italian, I'm going to see if I can scrounge some recipes from the relatives.
The physio came this afternoon, and thought that Simon's bad leg looked less swollen, so the blood thinning medicine must be working. She thought he was good enough to go out into his chair and into the shower over the weekend. Simon approves. The physio thought that she could detect a muscle flutter in his right bicep, this is very promising.
I went out to McLaren Vale this morning to see Margaret and Gerry, then onto Willunga to look at the block of land for sale there. It is very nice, perhaps a little further out of town than we would have liked, but no distance in the car, and achievable in an electric wheelchair. I'm thinking it over. I told Simon all about it, and he was very interested. He asked me where I would get the money, I told him that I had sold one of his kidneys! Simon grinned.
Shirley's retail therapy went well, she has two new pairs of shoes, a couple of cardigans, and a pair of gloves (it is chilly here). I think she was overwhelmed by the size of our shopping mall, they don't have such things in Tunisia.
Love Marian x
Friday, July 31, 2009
Thursday, July 30, 2009
30th July: A spanner in the works
Simon has developed a DVT (Deep Vein Thrombosis) in his right leg, part of this had already broken away and travelled into both lungs. This is being treated with a blood thinning medicine, but this is risky because they don't want any further bleeding in the brain. It is a delicate balancing act to get this right. As a result of this, Simon won't be going to rehab any time soon. His breathing mask is off during the day now, and he is much happier about that.
Despite this serious set-back Simon had a cheerful day. His troublesome ward mate was shifted to the ladies ward! (poor things). He is replaced by a sedate old gentleman called Werner. The relief in Simon was evident. Two of Simon's students were with him when Shirley and I arrived, they are a lovely couple: Malcolm and Jelena. Both have written on this blog. Jelena and Shirley share a common interest in textiles, and they got on very well.
Now for the really dramatic news. A card arrived in the post from one of Simon's research students - she had just been through her thesis examination and wrote to tell him about it. Simon took the card and read the first line of her handwriting out loud! I could barely believe my ears. Next I gave him a pen and paper and asked him to write his name with his left hand. He wrote Simon in 1 inch high letters. It looked like a child's writing, but how fantastic is this. I am so delighted and told him that now he can read and write he can start writing cheques. "Oh bugger" said Simon! I have had to correct him about his language a couple of times, they might decide that he is better off with Graham!
He had quite a good telephone conversation with Barry O'Grady from Perth, also checked the messages on his mobile. He looked at a magazine and took an interest in an article about organic wine production. Finally, he took part in a lengthy interview with an Occupational Therapy student who asked him heaps of questions about his home environment, and his activities at home. His answers were almost all correct - just one answer about the bathroom layout was wrong, but that may be because he was trying to explain that we planned to change the bathroom. It is just great to see him interacting at this level, and it gives me huge confidence.
Shirley is taking the day off tomorrow for some retail therapy with my Sister.
We heard today that our friend Christine Ho has had a baby boy (back in April), congratulations Christine!
Love Marian x
Despite this serious set-back Simon had a cheerful day. His troublesome ward mate was shifted to the ladies ward! (poor things). He is replaced by a sedate old gentleman called Werner. The relief in Simon was evident. Two of Simon's students were with him when Shirley and I arrived, they are a lovely couple: Malcolm and Jelena. Both have written on this blog. Jelena and Shirley share a common interest in textiles, and they got on very well.
Now for the really dramatic news. A card arrived in the post from one of Simon's research students - she had just been through her thesis examination and wrote to tell him about it. Simon took the card and read the first line of her handwriting out loud! I could barely believe my ears. Next I gave him a pen and paper and asked him to write his name with his left hand. He wrote Simon in 1 inch high letters. It looked like a child's writing, but how fantastic is this. I am so delighted and told him that now he can read and write he can start writing cheques. "Oh bugger" said Simon! I have had to correct him about his language a couple of times, they might decide that he is better off with Graham!
He had quite a good telephone conversation with Barry O'Grady from Perth, also checked the messages on his mobile. He looked at a magazine and took an interest in an article about organic wine production. Finally, he took part in a lengthy interview with an Occupational Therapy student who asked him heaps of questions about his home environment, and his activities at home. His answers were almost all correct - just one answer about the bathroom layout was wrong, but that may be because he was trying to explain that we planned to change the bathroom. It is just great to see him interacting at this level, and it gives me huge confidence.
Shirley is taking the day off tomorrow for some retail therapy with my Sister.
We heard today that our friend Christine Ho has had a baby boy (back in April), congratulations Christine!
Love Marian x
Wednesday, July 29, 2009
29th July: Simon has a shower
At last Simon had a hot shower today, he really enjoyed it, and was even dressed in his pyjama top which made him look very handsome. After a busy morning sitting out in the chair he was back in bed when I arrived after lunch attempting to have a snooze. I woke him and kept him awake talking for three hours, so I think he will get a good night's sleep tonight (Graham permitting). There were many positive signs today - his breathing mask was off for a long time, and there was some suggestion that he may only have to wear this at night from now on. That would be such a treat. We had a lot of recognisable words in sentences; some of the sentences don't make sense to me in terms of ideas - Malcolm is right that the brain makes unique connections after such an injury. He attempted a long explanation that had something to do with software, and when he realised that I could not understand he told me I was "totally useless". Such a charmer! Later he asked me why I was bothering to help him. The reply to that was easy.
Margaret came in to visit today, and she saw great improvement in Simon. Margaret also took the ward manager to task about some of the care issues, and in particular his near neighbour who was kicking up an awful fuss at one stage. We have a promise that as soon as a bed becomes available in the next ward Simon will be moved to it, most likely tomorrow. I hope and pray that this happens so that he can have some peace. Margaret's complaint did seem to bring about a greater level of responsiveness from the staff, and so I am happier than yesterday. We were also told that there was a chance that Simon could go to the Repat hospital for rehab. This is much closer to us than Hampstead. However, I want to check this out.
Today I discussed a plan with Simon to build a new house in Willunga, and he was very engaged with the design ideas. There is some land there that I might be able to lay my hands on. In all honesty, I don't think our current house will ever be suitable, and I want Simon to have as much independence as he can cope with. So I will find an architect and design a house for Simon, including a shallow lap pool that he can slide into.
Amongst many other activities, Simon took two phone calls today, one from Asher, and one from Gerry. Gerry was astonished by the progress and said that he understood about one in four words. Simon fed himself, and takes drinks and medicines easily. I suspect he might be able to do very well with his left hand. I offered him a white board marker today, but he didn't want to write.
I go to work in the mornings now, and that has been OK. If we can get Simon closer to home then I will be able to work a more normal pattern. Fortunately, I can get a lot done from the home computer. My reading time is dramatically affected - I used to spend two to three hours per day on academic papers, but this has gone out of the window because I spend so much time driving. I will need to rely on past capital for a while. Some colleagues at work have had experience of stroke victims in their families, and are being very supportive and informative. I am beginning to truly appreciate the value of social networking, and will try to write this up in some form. Any suggestions for a publication route from all you academic nerds out there?
Love Marian x
Margaret came in to visit today, and she saw great improvement in Simon. Margaret also took the ward manager to task about some of the care issues, and in particular his near neighbour who was kicking up an awful fuss at one stage. We have a promise that as soon as a bed becomes available in the next ward Simon will be moved to it, most likely tomorrow. I hope and pray that this happens so that he can have some peace. Margaret's complaint did seem to bring about a greater level of responsiveness from the staff, and so I am happier than yesterday. We were also told that there was a chance that Simon could go to the Repat hospital for rehab. This is much closer to us than Hampstead. However, I want to check this out.
Today I discussed a plan with Simon to build a new house in Willunga, and he was very engaged with the design ideas. There is some land there that I might be able to lay my hands on. In all honesty, I don't think our current house will ever be suitable, and I want Simon to have as much independence as he can cope with. So I will find an architect and design a house for Simon, including a shallow lap pool that he can slide into.
Amongst many other activities, Simon took two phone calls today, one from Asher, and one from Gerry. Gerry was astonished by the progress and said that he understood about one in four words. Simon fed himself, and takes drinks and medicines easily. I suspect he might be able to do very well with his left hand. I offered him a white board marker today, but he didn't want to write.
I go to work in the mornings now, and that has been OK. If we can get Simon closer to home then I will be able to work a more normal pattern. Fortunately, I can get a lot done from the home computer. My reading time is dramatically affected - I used to spend two to three hours per day on academic papers, but this has gone out of the window because I spend so much time driving. I will need to rely on past capital for a while. Some colleagues at work have had experience of stroke victims in their families, and are being very supportive and informative. I am beginning to truly appreciate the value of social networking, and will try to write this up in some form. Any suggestions for a publication route from all you academic nerds out there?
Love Marian x
Tuesday, July 28, 2009
28th July: Simon takes a phone call
Simon had quite a good day, despite some rather 'iffy' care on his ward. He had been out in his chair for two and a half hours this morning, then eaten lunch. I know this was bolognese because I found some spaghetti in his bed! He was very interested in the copy of Campus Wide Information Systems that had arrived in the post today, it was the issue that he guest edited with Michael and Ken, and also contained two of his papers. He flicked through it at least three times and seemed very pleased with it. This generated quite a high level academic conversation in which Simon talked about some planned papers, and I tried to find out where he had hidden the data for the SMAL-talk paper. The paper is written, and he had set up tables, but I cannot find the data to populate the tables. I am hoping that with Moira (his secretary's) help we can track this down. SMAL-talk was a very original experiment. Later he drifted into the world of fantasy by asking his mum to generate a critique of economics. Shirley said she would do this once she's finished the ironing....
Speaking of fantasies, I did quiz him about the Anne Widdecombe story, and he vehemently denied this, it was Glenda Jackson!
I bought a liquidiser yesterday, and made a banana smoothie for Simon today, he drank the whole lot and requested a raspberry and banana smoothie for tomorrow. I have never known him so easy to please.
Just after 3pm, Asher phoned from England, and Simon had quite a long chat with him. Simon was following what Asher was saying, listening intently. I was able to catch some of his replies, they were mostly 'yes', 'I see', 'good', 'oh no', so he was certainly responding to Asher, and he is looking forward to another call tomorrow.
We watched a TV programme about crocodiles - wildlife films seem to keep his attention, so I feel a David Attenborough box set coming on. In fact, I think we have one somewhere on Blu Ray. I also have one of Michael Palin's films that he might like.
Simon has not made friends with the man opposite, Graham, and is still frightened by him. They keep the curtain drawn between them, but that does not prevent him from hearing all the yelling. I think it may be time to move Simon to another hospital.
We were unable to speak with the social worker today (absent), but Shirley managed to track down and speak to the dietician. We also had some brief words with his doctors and the nursing staff. They had missed an enormous septic blister on the palm of his right hand. I found it when I was cleaning his finger nails (which I do everyday). How can this happen under an acute nursing care regime? I have been promised a session with the social worker tomorrow if he turns up, I desperately need to obtain power of attourney for Simon.
I was at work this morning to see my research student, and another interesting connection popped up. Her husband is the doctor on the stroke ward at Flinders Hospital, and he knows about Simon's case. She is going to arrange for me to speak to him this evening. I am going to ask him about the wisdom of moving Simon to Flinders (where I work), and whether he thinks the standard of care might be better. At present, Graham is taking the lion's share of the nurses' attention on Simon's ward, and important things are being missed. Flinders is also closer to us, about 15 minutes rather than the long journey into Adelaide, and I would be able to pop in and out during the day. I am being strongly advised not to move Simon to a private hospital because they lack the specialisms that he needs.
Stop Press, the doctor that I referred to just phoned, and he is going to come with me to Adelaide on Saturday morning to see Simon and talk to the staff there. I needed an ally, and God just sent one. He told me that Simon's is an heamorraghic stroke, and that the chances of recovery are greater than ischaemic stroke (sorry if those words are mispelt). He also sounded very positive when I told him of the strides that Simon has made.
Love from Marian xx
Speaking of fantasies, I did quiz him about the Anne Widdecombe story, and he vehemently denied this, it was Glenda Jackson!
I bought a liquidiser yesterday, and made a banana smoothie for Simon today, he drank the whole lot and requested a raspberry and banana smoothie for tomorrow. I have never known him so easy to please.
Just after 3pm, Asher phoned from England, and Simon had quite a long chat with him. Simon was following what Asher was saying, listening intently. I was able to catch some of his replies, they were mostly 'yes', 'I see', 'good', 'oh no', so he was certainly responding to Asher, and he is looking forward to another call tomorrow.
We watched a TV programme about crocodiles - wildlife films seem to keep his attention, so I feel a David Attenborough box set coming on. In fact, I think we have one somewhere on Blu Ray. I also have one of Michael Palin's films that he might like.
Simon has not made friends with the man opposite, Graham, and is still frightened by him. They keep the curtain drawn between them, but that does not prevent him from hearing all the yelling. I think it may be time to move Simon to another hospital.
We were unable to speak with the social worker today (absent), but Shirley managed to track down and speak to the dietician. We also had some brief words with his doctors and the nursing staff. They had missed an enormous septic blister on the palm of his right hand. I found it when I was cleaning his finger nails (which I do everyday). How can this happen under an acute nursing care regime? I have been promised a session with the social worker tomorrow if he turns up, I desperately need to obtain power of attourney for Simon.
I was at work this morning to see my research student, and another interesting connection popped up. Her husband is the doctor on the stroke ward at Flinders Hospital, and he knows about Simon's case. She is going to arrange for me to speak to him this evening. I am going to ask him about the wisdom of moving Simon to Flinders (where I work), and whether he thinks the standard of care might be better. At present, Graham is taking the lion's share of the nurses' attention on Simon's ward, and important things are being missed. Flinders is also closer to us, about 15 minutes rather than the long journey into Adelaide, and I would be able to pop in and out during the day. I am being strongly advised not to move Simon to a private hospital because they lack the specialisms that he needs.
Stop Press, the doctor that I referred to just phoned, and he is going to come with me to Adelaide on Saturday morning to see Simon and talk to the staff there. I needed an ally, and God just sent one. He told me that Simon's is an heamorraghic stroke, and that the chances of recovery are greater than ischaemic stroke (sorry if those words are mispelt). He also sounded very positive when I told him of the strides that Simon has made.
Love from Marian xx
Monday, July 27, 2009
27th July: In with the lads
Simon was moved into a boy's ward today with three other chaps. This move was distressing for him, and set him back a little way. When we arrived he was sitting out in his chair, but was pleading to go back to bed he was so tired and uncomfortable. He was also very frightened of the man in the bed opposite him who was very ill, agitated, and using quite a lot of bad language. The man is a bikie, completely covered in tattoos. Biker gangs have a very bad reputation in Adelaide, but I know that they are not all bad people, and it might well be the case that he and Simon will hit it off in a few days. Just that today, Simon was scared of him. I did ask if Simon could be moved to a private hospital, but was told that the private hospitals would not have the standard of nursing care that he needs just now. We do have private medical insurance, but it seems to be of little use to us while he is in a public hospital. We had a bill for over $700 for the ambulance today, thankfully the insurance will cover this.
I made enough fuss to get Simon lifted back into bed, and then he slept peacefully for the rest of the afternoon. The other lads in the ward are OK, there is Paul who sleeps mostly, and Rick who is quite bright, chatty and could be a good source of inspiration for Simon. I am hoping they will get on well. He misses the familiarity of his old ward and is disoriented because his bed is facing in the opposite direction. They also failed to transfer his TV subscription that we pay a fortune for. We took a step backwards today. I am determined that he should be treated with dignity, and have made appointments with people tomorrow to discuss the situation. At the very least, if they intend to move him again I will insist on being there at the time so that he can tell me what he is thinking and feeling, and help him to feel safe.
I am going to go to work in the mornings from now on; it will feel strange. Quite a lot of my work involves listening to students who have problems. I'm only in the market for good news and progress stories just now, so this may be challenging.
We had a call from Asher, and he seems to be unscathed. We wondered what in the world could have brought down a man with such a cast-iron constitution. Fingers crossed for a full recovery, Asher and many thanks for ringing. I will have the phone by Simon's bed tomorrow at 3pm (Adelaide time) and will try to keep him awake for your call.
I took a short walk along the beach this evening and enjoyed a moody sunset. I thought I saw a shark.
Love Marian x
I made enough fuss to get Simon lifted back into bed, and then he slept peacefully for the rest of the afternoon. The other lads in the ward are OK, there is Paul who sleeps mostly, and Rick who is quite bright, chatty and could be a good source of inspiration for Simon. I am hoping they will get on well. He misses the familiarity of his old ward and is disoriented because his bed is facing in the opposite direction. They also failed to transfer his TV subscription that we pay a fortune for. We took a step backwards today. I am determined that he should be treated with dignity, and have made appointments with people tomorrow to discuss the situation. At the very least, if they intend to move him again I will insist on being there at the time so that he can tell me what he is thinking and feeling, and help him to feel safe.
I am going to go to work in the mornings from now on; it will feel strange. Quite a lot of my work involves listening to students who have problems. I'm only in the market for good news and progress stories just now, so this may be challenging.
We had a call from Asher, and he seems to be unscathed. We wondered what in the world could have brought down a man with such a cast-iron constitution. Fingers crossed for a full recovery, Asher and many thanks for ringing. I will have the phone by Simon's bed tomorrow at 3pm (Adelaide time) and will try to keep him awake for your call.
I took a short walk along the beach this evening and enjoyed a moody sunset. I thought I saw a shark.
Love Marian x
Sunday, July 26, 2009
26th July: Netball finals
Simon has recently been dreaming that he was the physio in charge of the Swifts Ladies netball team, another fantasy was that he was their kit manager. It was no surprise today that he watched most of the Vixens vs Adelaide Thunderbirds netball final. I am not entirely sure that he had his eye on the ball....
Simon had been out in his chair for around three hours, and although this is tiring, he is much more comfortable when he gets back to bed. He continues to eat and drink well, almost pouncing on food when it arrives. He has got the hang of picking up his own drink and using the straw by himself. Less chat than yesterday, but much of it understandable. He told me he was English today. Simon still has his 'Bill and Ben' language (flobalob) which I can sometimes understand with the help of intonation and hand signals. I have to guess a great deal.
Simon seemed cheered up at the news that Mel (our niece) is coming home in a couple of week's time. They share a passion for high-end shopping, and I suspect he feels he has an ally there (I am the frugal type - what's wrong with Op shops!).
We just received a text message that Asher has been in hospital. Get well soon, Asher!
Love Marian x
Simon had been out in his chair for around three hours, and although this is tiring, he is much more comfortable when he gets back to bed. He continues to eat and drink well, almost pouncing on food when it arrives. He has got the hang of picking up his own drink and using the straw by himself. Less chat than yesterday, but much of it understandable. He told me he was English today. Simon still has his 'Bill and Ben' language (flobalob) which I can sometimes understand with the help of intonation and hand signals. I have to guess a great deal.
Simon seemed cheered up at the news that Mel (our niece) is coming home in a couple of week's time. They share a passion for high-end shopping, and I suspect he feels he has an ally there (I am the frugal type - what's wrong with Op shops!).
We just received a text message that Asher has been in hospital. Get well soon, Asher!
Love Marian x
Saturday, July 25, 2009
25th July: False name and address
Simon had been out in his chair for a couple of hours today, and was very chatty when we arrived. He said "hello mum" to Shirley, and she was just delighted with that. His speech was much clearer, and apparently he impressed the doctors this morning by giving his full name. When his nurse asked him to repeat his full name he gave a false one, then winked and said "only taking the p***". Simon was quite jolly and bright in himself especially when they take the breathing mask off. He is eating and drinking well, and has worked out some techniques for getting a break from the mask by asking for drinks and food, and then engaging his nurses in protracted conversations. Gradually, he is wrapping them round his little finger! They all love him.
Simon told me he was worried about his illness. I explained it to him again, and told him that he was recovering at a good rate. Just two weeks ago he could hardly open his eyes, or breath for himself. Each day we pass a new milestone. I have been warned about possible set-backs - that's where the prayers come in. Sitting out in the chair does take a lot of his energy, but this means that he is sleeping better at night. It would be good to get him into a daytime - nighttime routine, rather than the random sleeping pattern that he has been experiencing.
When I was trying to find a TV programme that he wanted to watch we were plagued by advertisements and he pronounced that this was "absolutely appalling"!
I took in his radio and the mini-MP3 player that he had filled with his favourite music for his trip to Greece. He listened to this, first up was Chuck Berry. He listened to two songs, and offered me one of the earphones, so we listened to 'Good Golly Miss Molly' and were both dancing - Simon's dancing was always rather odd, so there was nothing surprising about his one-legged supine dance routine. He made us all smile and laugh a lot today, both Shirley and I feel uplifted. My vacuum cleaner blew up today, hooray!
Love Marian x
If you wish to post comments to this blog there are instructions under 15th July, scroll down to Asherros.
Simon told me he was worried about his illness. I explained it to him again, and told him that he was recovering at a good rate. Just two weeks ago he could hardly open his eyes, or breath for himself. Each day we pass a new milestone. I have been warned about possible set-backs - that's where the prayers come in. Sitting out in the chair does take a lot of his energy, but this means that he is sleeping better at night. It would be good to get him into a daytime - nighttime routine, rather than the random sleeping pattern that he has been experiencing.
When I was trying to find a TV programme that he wanted to watch we were plagued by advertisements and he pronounced that this was "absolutely appalling"!
I took in his radio and the mini-MP3 player that he had filled with his favourite music for his trip to Greece. He listened to this, first up was Chuck Berry. He listened to two songs, and offered me one of the earphones, so we listened to 'Good Golly Miss Molly' and were both dancing - Simon's dancing was always rather odd, so there was nothing surprising about his one-legged supine dance routine. He made us all smile and laugh a lot today, both Shirley and I feel uplifted. My vacuum cleaner blew up today, hooray!
Love Marian x
If you wish to post comments to this blog there are instructions under 15th July, scroll down to Asherros.
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