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.
Friday, July 24, 2009
24th July: Simon's chair
Simon was sitting out in his chair today, and looked much better for it. It takes a big effort to get him out of bed (three nurses plus a hoist), and I think it is quite scary for the patient the first time. He seemed pleased with himself, and it gave me a chance to rub his back. I didn't get chance to feed him my home-made lasagne because he had already scoffed a sandwich and a banana. However, he did have some strawberries and cream that I had taken in. Shirley and I will have the lasagne for tea.
After about three hours in the chair, Simon said he was tired and wanted to go back to bed. It is quite an effort sitting up because he tends to fall over to the right side and has to keep dragging his body upright.
Once back in bed the breathing mask was replaced, making it difficult to communicate. He asked for a small radio, I have one somewhere. Once again, Simon wanted details of his 'accident', so I told him all over again. Also he asked how long he might be in the hospital. I confess that I lied a little, and said it would not be for long.
He noticed that Shirley was wearing unusual shoes, pointed at them and smiled - she is wearing granny lace-ups these days. Later he passed Shirley her walking stick. This man is not stage two! By the way, the stages refer to the Brunnstrom Recovery Scale if anyone wants to look that up. His preferred reading matter today was a catalogue of mobile phones!
Love Marian x
After about three hours in the chair, Simon said he was tired and wanted to go back to bed. It is quite an effort sitting up because he tends to fall over to the right side and has to keep dragging his body upright.
Once back in bed the breathing mask was replaced, making it difficult to communicate. He asked for a small radio, I have one somewhere. Once again, Simon wanted details of his 'accident', so I told him all over again. Also he asked how long he might be in the hospital. I confess that I lied a little, and said it would not be for long.
He noticed that Shirley was wearing unusual shoes, pointed at them and smiled - she is wearing granny lace-ups these days. Later he passed Shirley her walking stick. This man is not stage two! By the way, the stages refer to the Brunnstrom Recovery Scale if anyone wants to look that up. His preferred reading matter today was a catalogue of mobile phones!
Love Marian x
Thursday, July 23, 2009
23rd July: Using a fork
I was working today, so didn't get to see Simon until this evening arriving just in time for his evening meal. He had a plate of almost proper food, meat, potato and veg. He used the fork independently to feed himself, and polished off most of the meat. He is now routinely refusing to eat hospital veg! He also drinks milkshake from a carton using a straw, and does this by himself.
Most promising, a chair has been moved onto the ward with Simon's name on it. It is the size of a throne, and I think he will look very princely in it. Today he was too sleepy to be lifted into the chair, but with luck tomorrow he will have his first experience of getting out of bed. It will be a real treat.
The breathing mask is still on most of the time, this is also being reviewed but I don't dare get my hopes up about that.
Simon asked how he got inside the hospital. I explained that he had been brought in an ambulance - "I didn't know that" he said. Then I explained again what had happened, how he had been driving, was taken ill, steered his car to the side of the road, got out and collapsed in the road". At the end of this he said "that's an interesting story". He said a lot more but I wasn't picking him up so well today, I think because I had spent the day at work and my mind had been on a different wavelength. I showed him the newspaper and he was recognising advertisements from the supermarkets for things that he likes: he pointed to diet coke, beer and lasagne!
Simon listened to a little bit of Frank Sinatra, then we left him to watch TV, and he seemed settled.
Love Marian x
Most promising, a chair has been moved onto the ward with Simon's name on it. It is the size of a throne, and I think he will look very princely in it. Today he was too sleepy to be lifted into the chair, but with luck tomorrow he will have his first experience of getting out of bed. It will be a real treat.
The breathing mask is still on most of the time, this is also being reviewed but I don't dare get my hopes up about that.
Simon asked how he got inside the hospital. I explained that he had been brought in an ambulance - "I didn't know that" he said. Then I explained again what had happened, how he had been driving, was taken ill, steered his car to the side of the road, got out and collapsed in the road". At the end of this he said "that's an interesting story". He said a lot more but I wasn't picking him up so well today, I think because I had spent the day at work and my mind had been on a different wavelength. I showed him the newspaper and he was recognising advertisements from the supermarkets for things that he likes: he pointed to diet coke, beer and lasagne!
Simon listened to a little bit of Frank Sinatra, then we left him to watch TV, and he seemed settled.
Love Marian x
Wednesday, July 22, 2009
22nd July: Regaining control of the TV Remote
I have never bothered to fight Simon for the TV remote, we just bought another TV, it saved heaps of arguments. Today he wrested control of his own TV remote in the hospital and spent quite some time flicking through all of the channels. Occasionally he would stop and watch something - he was quite taken by a programme about urban snakes. Simon listened to a little bit of music, Carla Bruni singing in French, and began to take an interest in his Ipod.
We took some lunch in for him, home cooked cauliflower cheese, and a tuna sandwich. Most popular was the sugar-free cream soda (an outrageous pink colour). I took the precaution of de-gassing it first.
His doctors came by today, woke him from a deep sleep and proceeded to fire questions and commands at him. Poor Simon could not keep up with them, and it looked for all the world as if he could not communicate. I know that he can and does, but the senior doctor (about fourteen years old) decided he is a 'stage 2' whatever that means. Day will come when Simon will show he can wipe the floor with these guys.....
Love Marian x
We took some lunch in for him, home cooked cauliflower cheese, and a tuna sandwich. Most popular was the sugar-free cream soda (an outrageous pink colour). I took the precaution of de-gassing it first.
His doctors came by today, woke him from a deep sleep and proceeded to fire questions and commands at him. Poor Simon could not keep up with them, and it looked for all the world as if he could not communicate. I know that he can and does, but the senior doctor (about fourteen years old) decided he is a 'stage 2' whatever that means. Day will come when Simon will show he can wipe the floor with these guys.....
Love Marian x
Tuesday, July 21, 2009
21st July: 'ave a banana
Simon ate a sandwich and a banana today! He peeled the banana left-handed and would have eaten it all in one gulp if I'd let him! He is also drinking water through a straw. This means that his swallowing is nearly 100% and he is learning to eat on one side. He had his first cup of coffee this afternoon, probably the first hot drink he has had in a fortnight. I am so pleased with him.
He was also chatty, asking if we could go away on holiday, and could he come home. He had a look at a Hiroshige art book, and seemed to really enjoy that for a few minutes. Also listened to some music. The breathing mask is still on, and that is a shame because he really wants to communicate more. After being told off by one of the nurses for interfering with his breathing mask he gave a distinctive rude signal (behind her back!). Then he listened to me read from George Pelacanos (I must worker harder on an American accent). Each day, Simon looks a little better and gets stronger. He is able to help the nursing staff by lifting himself with an overhead grab (not sure of the technical term), and he lifts his head off the pillow to eat and drink. He is clearly frustrated by his condition, and all of the constraints on his movement. I just wish we could get him out of the bed. The lady in the next bed was put out into a chair today, she looked so happy.
I have seen some whizz-bang wheelchairs, they are everywhere once you start looking. Today I saw a guy operating a chair with his chin moving faster than anything on the M25!
Keep the messages coming, Simon responds to these. I read Roger Mcgough's poem 'At lunchtime', that certainly appealed to him. He likes cards, and appears to read them, though I can't be sure about that.
Much love, Marian x
He was also chatty, asking if we could go away on holiday, and could he come home. He had a look at a Hiroshige art book, and seemed to really enjoy that for a few minutes. Also listened to some music. The breathing mask is still on, and that is a shame because he really wants to communicate more. After being told off by one of the nurses for interfering with his breathing mask he gave a distinctive rude signal (behind her back!). Then he listened to me read from George Pelacanos (I must worker harder on an American accent). Each day, Simon looks a little better and gets stronger. He is able to help the nursing staff by lifting himself with an overhead grab (not sure of the technical term), and he lifts his head off the pillow to eat and drink. He is clearly frustrated by his condition, and all of the constraints on his movement. I just wish we could get him out of the bed. The lady in the next bed was put out into a chair today, she looked so happy.
I have seen some whizz-bang wheelchairs, they are everywhere once you start looking. Today I saw a guy operating a chair with his chin moving faster than anything on the M25!
Keep the messages coming, Simon responds to these. I read Roger Mcgough's poem 'At lunchtime', that certainly appealed to him. He likes cards, and appears to read them, though I can't be sure about that.
Much love, Marian x
Monday, July 20, 2009
20th July: Two weeks in
We are now two weeks into Simon's journey, and it feels like we've come a long way. Some aspects of Simon's condition are now under control, and he is making progress. We were told today that it might be quite some time before we can get Simon to rehab, so we will have to be patient.
Today Simon was very sleepy, he woke briefly to have some lunch (he refused the spinach and I don't blame him), he listened to his messages which I read every day, and had a look at the newspaper. Then off to the land of nod.
I have been told that I can take food for him from home, so tomorrow he is going to get a nice home-made shepherd's pie (well mashed). He seemed mighty pleased about that.
Thanks for all the contributions to the blog, emails, and cards. If you want to add a posting there are instructions under 'raining cats and dogs in adelaide', scroll down to the post by Asherros.
Love Marian x
Today Simon was very sleepy, he woke briefly to have some lunch (he refused the spinach and I don't blame him), he listened to his messages which I read every day, and had a look at the newspaper. Then off to the land of nod.
I have been told that I can take food for him from home, so tomorrow he is going to get a nice home-made shepherd's pie (well mashed). He seemed mighty pleased about that.
Thanks for all the contributions to the blog, emails, and cards. If you want to add a posting there are instructions under 'raining cats and dogs in adelaide', scroll down to the post by Asherros.
Love Marian x
Sunday, July 19, 2009
19th July: Lazy Sunny Afternoon
Simon had a good chat with me today. He is stringing together quite useful sentences and even courteously e.g he asked "If you have time can you bring me some things from home". I couldn't make out what it was he wanted me to bring, so I ran through a list, getting the thumbs up for the computer (I suspect he wants to check his email) and more food! When he wants the nurses' attention he says "Excuse me". This nurse has seen him improving over the last week and thinks he is much better.
Certainly Simon is eating and drinking very well - it is all pureed food and thickened fluid, but I think that soon he will be able to take more substantial meals. He independently swallows tablets and medicines. Once he gets to rehab, I can imagine that he will make great strides with his speech.
He likes to flick over pages in a newspaper, but at such speed that he cannot be reading even the headlines. I think he is looking for pictures, so I will take in one of his art books. Oddly, he does not seem very interested in hearing music, although he liked me singing to him today (not so good for the other patients in the ward).
Shirley couldn't visit today because she thought a cold was coming. Best to stay indoors in the warm. She is in the kitchen again, cooking up chicken cacciatore. I ain't going to starve that's for sure.
Love Marian x
Certainly Simon is eating and drinking very well - it is all pureed food and thickened fluid, but I think that soon he will be able to take more substantial meals. He independently swallows tablets and medicines. Once he gets to rehab, I can imagine that he will make great strides with his speech.
He likes to flick over pages in a newspaper, but at such speed that he cannot be reading even the headlines. I think he is looking for pictures, so I will take in one of his art books. Oddly, he does not seem very interested in hearing music, although he liked me singing to him today (not so good for the other patients in the ward).
Shirley couldn't visit today because she thought a cold was coming. Best to stay indoors in the warm. She is in the kitchen again, cooking up chicken cacciatore. I ain't going to starve that's for sure.
Love Marian x
Saturday, July 18, 2009
18th July: Lost in the Botanic Park
Simon had another quiet day, still very tired and sleepy. He did not much like the fish they gave him for dinner, or the custard to follow. While Shirley was chatting to him he declared quite clearly "I am a University Lecturer", not quite sure what prompted that, it might have been a previous conversation.
A colleague from UniSA popped in this afternoon and brought a copy of the paper that she and Simon had just written, he had a good look at the front page. I will read it to him tomorrow when he is awake. Simon had a number of papers in progress, and I am wondering what to do about those. I think some were just about ready for publication. If you were expecting a paper from Simon, please let me know, I can try to find it on the computer.
When we left he had been turned onto his side to relieve the pressure on his back, and he looked peaceful.
On leaving the hospital I got myself into a bit of a pickle on the road. My lane was blocked and so was forced to go straight on and ended up in the botanic gardens, then a loop around the north of the city by the Torrens river, tried to get back onto my route but was forced straight on to Victoria Square, the markets and China town. In this way Shirley inadvertently got her first guided tour of the City of Adelaide!
Shirley is now in the kitchen cooking up a storm. Skippy looks on hopefully as she expertly disects a chicken...
I got out and mowed the lawn today, again good to do some normal stuff. We have our first daffodils poking through, and one of Simon's potatoes showed itself yesterday morning. He was very pleased with that.
Love Marian xx
A colleague from UniSA popped in this afternoon and brought a copy of the paper that she and Simon had just written, he had a good look at the front page. I will read it to him tomorrow when he is awake. Simon had a number of papers in progress, and I am wondering what to do about those. I think some were just about ready for publication. If you were expecting a paper from Simon, please let me know, I can try to find it on the computer.
When we left he had been turned onto his side to relieve the pressure on his back, and he looked peaceful.
On leaving the hospital I got myself into a bit of a pickle on the road. My lane was blocked and so was forced to go straight on and ended up in the botanic gardens, then a loop around the north of the city by the Torrens river, tried to get back onto my route but was forced straight on to Victoria Square, the markets and China town. In this way Shirley inadvertently got her first guided tour of the City of Adelaide!
Shirley is now in the kitchen cooking up a storm. Skippy looks on hopefully as she expertly disects a chicken...
I got out and mowed the lawn today, again good to do some normal stuff. We have our first daffodils poking through, and one of Simon's potatoes showed itself yesterday morning. He was very pleased with that.
Love Marian xx
Friday, July 17, 2009
17th July:
Simon had a quiet and reasonably comfortable day. A bit sleepy, although he had rested quite well during the night. He is getting used to the mask and because of this they don't have to tie his hand down so often. Simon polished off breakfast, and lunch, then declared that he was still hungry this afternoon. A very kind nurse found a mango flavoured mousse in the fridge, and Simon gave me his sign for 'perfect'. Tomorrow I go on the hunt for interesting flavoured baby foods that are salt and sugar-free. Drinking and swallowing is improving, though still not allowed water because it is too thin, he has a thickened lemon squash which he seems to find palatable.
We had a couple of good conversations, and a nice cuddle.
Shirley had a wander around the hospital looking for their hyperbaric chamber, and found a very helpful person who explained a lot to her. This hospital is the only one in SA that has a hyperbaric chamber but they do not use it because the doctor's here do not agree that it is of any use. Others, elsewhere, rave about it as a useful aid for stroke victims. Hmm. Medicine is a very imprecise science However, this lady told Shirley all about the Hampstead facility and said it was excellent, she had seen the improvement in people who had been there. We are getting conflicting stories about when Simon will be able to be moved. The consultant said in 'about a week', the intern reckoned much longer. Please let it be sooner. We had really nice nurses today.
I popped into work this morning, it was nice to do something normal like that. We've had some cards arrive in the post, thanks for those, I have taken them into the hospital. I think that I have managed to contact most people by now, or they have popped up on this blog.
Love Marian x
We had a couple of good conversations, and a nice cuddle.
Shirley had a wander around the hospital looking for their hyperbaric chamber, and found a very helpful person who explained a lot to her. This hospital is the only one in SA that has a hyperbaric chamber but they do not use it because the doctor's here do not agree that it is of any use. Others, elsewhere, rave about it as a useful aid for stroke victims. Hmm. Medicine is a very imprecise science However, this lady told Shirley all about the Hampstead facility and said it was excellent, she had seen the improvement in people who had been there. We are getting conflicting stories about when Simon will be able to be moved. The consultant said in 'about a week', the intern reckoned much longer. Please let it be sooner. We had really nice nurses today.
I popped into work this morning, it was nice to do something normal like that. We've had some cards arrive in the post, thanks for those, I have taken them into the hospital. I think that I have managed to contact most people by now, or they have popped up on this blog.
Love Marian x
Thursday, July 16, 2009
16th July: when the going gets tough...
Simon's day was more eventful than perhaps we needed. He had a good morning, ate his breakfast and was sleeping peacefully when I arrived with his secretary, Moira. On waking, he had a lot to say, some of which I could understand, and something that I definitely understood. It was on the dark side. Shirley and I are both quite upset. Gerry, my brother-in-law went in to chirp him up a bit with a few grubby jokes and promises of endless pub crawls. He did smile.
The consultant visited and told me that Simon might be able to go to Hampstead in a week's time. This is a very positive thing, because at Hampstead they will focus on what he is thinking, and feeling as well as the clinical aspects of his condition. It will be a much more conducive place for recovery. I can't wait to spring him from the stroke ward and get him into a good hot shower.
This afternoon Simon strung a whole sentence together that I was able to get the meaning of: "Is it possible for me to come home for a bit?" I said it was, that somehow he would get home and see his cat and how his garden is growing. I may need a lot of help to do this, but I will make it happen, even if I have to put him on the back of the ute from the plumbing shop.
We had a rather grumpy nurse on this evening and she was complaining about all of his visitors. She says he can only have close family visiting (trouble is we can't be there in the evening). So I say 'get knotted' nurse Cratchett! If you want to try and blag your way in as a relative just remember to put on an English accent, complain about the weather a lot, and pretend to feel aggrieved about the quality of the England cricket team.
If you want to add a comment to the blog, there are instructions on how to do this on 15th July: Raining cats and dogs in Adelaide, scroll down to Asherros.
Thanks again for all the well wishes. They all find their destination, and invariably hit the spot.
Marian xx
The consultant visited and told me that Simon might be able to go to Hampstead in a week's time. This is a very positive thing, because at Hampstead they will focus on what he is thinking, and feeling as well as the clinical aspects of his condition. It will be a much more conducive place for recovery. I can't wait to spring him from the stroke ward and get him into a good hot shower.
This afternoon Simon strung a whole sentence together that I was able to get the meaning of: "Is it possible for me to come home for a bit?" I said it was, that somehow he would get home and see his cat and how his garden is growing. I may need a lot of help to do this, but I will make it happen, even if I have to put him on the back of the ute from the plumbing shop.
We had a rather grumpy nurse on this evening and she was complaining about all of his visitors. She says he can only have close family visiting (trouble is we can't be there in the evening). So I say 'get knotted' nurse Cratchett! If you want to try and blag your way in as a relative just remember to put on an English accent, complain about the weather a lot, and pretend to feel aggrieved about the quality of the England cricket team.
If you want to add a comment to the blog, there are instructions on how to do this on 15th July: Raining cats and dogs in Adelaide, scroll down to Asherros.
Thanks again for all the well wishes. They all find their destination, and invariably hit the spot.
Marian xx
Wednesday, July 15, 2009
15th July: Raining cats and dogs in Adelaide
Simon ate well today, he polished off everything that he was offered, and even had a go at feeding himself left-handed. He is also able to indicate when he needs the loo, and was almost independent about that. Vast progress really. Where we are standing still is on his breathing. The mask is on almost 24/7 which impedes his ability to communicate verbally, and they still tie his hand down to stop him pulling the mask off. When I am there, I release his hand and just keep it away from the mask but it requires permanent vigilance. I spoke with a doctor who explained everything that was happening - there are improvements to BP, and diabetic conditions, and with good progress he may be able to go without the mask in a few days (except at nightime). Because he is very sleepy, he is not sufficiently alert to be left to breath alone during the daytime.
Simon had a visit from one of his students this afternoon, he recognised her and seemed to follow her conversation. This evening he asked to watch TV. You have to get this piped in at enormous cost ($25 for 3 days TV!), but I am hoping that they will switch it on this evening.
Some flowers arrived from colleagues at Cranfield (thanks guys). We passed on all of your best wishes and messages of support. He is recognising all the names, and does respond with a smile to some of the cheeky comments e.g. not trusting him with all those nurses....
Moira, Simon's secretary, came to the house this morning to back-up his computer. I have been worried about our old PC falling over and him losing all his work, not to mention his stash of music. So was able to reassure him that it is all backed-up and safely archived.
I got a cuddle, a squeeze and a suggestive wink today. I have an idea what's on his mind....
Marian x
Simon had a visit from one of his students this afternoon, he recognised her and seemed to follow her conversation. This evening he asked to watch TV. You have to get this piped in at enormous cost ($25 for 3 days TV!), but I am hoping that they will switch it on this evening.
Some flowers arrived from colleagues at Cranfield (thanks guys). We passed on all of your best wishes and messages of support. He is recognising all the names, and does respond with a smile to some of the cheeky comments e.g. not trusting him with all those nurses....
Moira, Simon's secretary, came to the house this morning to back-up his computer. I have been worried about our old PC falling over and him losing all his work, not to mention his stash of music. So was able to reassure him that it is all backed-up and safely archived.
I got a cuddle, a squeeze and a suggestive wink today. I have an idea what's on his mind....
Marian x
Tuesday, July 14, 2009
14th July: Bastille Day
Simon was similar to yesterday, perhaps a little sleepier. He had a difficult night with the breathing mask. He has been moved to a bed right outside the nursing station where they can monitor him more closely, he is sharing his ward with three women! He seemed happy with that, and when I mentioned that I could perhaps arrange for The Swifts (the Australian women's netball team) to come to visit he perked up tremendously. A little later he patted my bottom. Things are looking up, or down depending on your perspective...
I was able to feed him a little, but he is still very sleepy and he must be alert if he is going to swallow food properly. Unfortunately, the breathing mask is going to have stay on almost 24/7 and he is not going to like this. After the sleep study yesterday, it was discovered that he was experiencing 26 poor episodes per hour of sleep. This is very dangerous because his brain is being starved of oxygen during those episodes. We need to feed his brain with oxygen otherwise he will lose his smarts, which we know are still there. I read him some beat-generation poetry today, Charles Bukowski (although when I told Simon it was beat-generation he seemed to disagree, must look that up). Trouble with these poems is that the language is sometimes a bit racy for an open ward, and so I have had to tidy up the language a bit with phrases like 'I cleared off'.
He is very tired, but makes every effort to communicate with language, his eyes, and his hand. There is certainly feeling in his right arm because he responds to pain, but his hand would not respond today.
There are other good signs, including some things that I cannot tell you about because they are too personal.
Shirley and Margaret were with me today. I am hoping that some visitors can go in the evenings. He listened to a little classical music today, for about five minutes, so I will try a bit more of that. He had just ordered this CD from ebay, and very kindly, the supplier enclosed a note saying get well soon and no charge. That was David Rowe from NSW. Good on ya David.
Marian xx
I was able to feed him a little, but he is still very sleepy and he must be alert if he is going to swallow food properly. Unfortunately, the breathing mask is going to have stay on almost 24/7 and he is not going to like this. After the sleep study yesterday, it was discovered that he was experiencing 26 poor episodes per hour of sleep. This is very dangerous because his brain is being starved of oxygen during those episodes. We need to feed his brain with oxygen otherwise he will lose his smarts, which we know are still there. I read him some beat-generation poetry today, Charles Bukowski (although when I told Simon it was beat-generation he seemed to disagree, must look that up). Trouble with these poems is that the language is sometimes a bit racy for an open ward, and so I have had to tidy up the language a bit with phrases like 'I cleared off'.
He is very tired, but makes every effort to communicate with language, his eyes, and his hand. There is certainly feeling in his right arm because he responds to pain, but his hand would not respond today.
There are other good signs, including some things that I cannot tell you about because they are too personal.
Shirley and Margaret were with me today. I am hoping that some visitors can go in the evenings. He listened to a little classical music today, for about five minutes, so I will try a bit more of that. He had just ordered this CD from ebay, and very kindly, the supplier enclosed a note saying get well soon and no charge. That was David Rowe from NSW. Good on ya David.
Marian xx
Monday, July 13, 2009
Day 7: transferred to ward B7
When I arrived today Simon looked really good although he hadn't slept all night. I think he may be afraid to sleep at night or maybe his body is just out of sync. He had torn out his nasal gastric tube for the fourth time, and this time, thankfully the doctor opted to try him without it. He had a visit from the speech therapist to assess many things, including his ability to swallow. If he can swallow then the nasal gastric tube can stay out. Simon not only swallowed, he gobbled a cup full of ice chips, four spoons of chocolate mousse, and later a three course meal of pureed meat and veg. He was starving! There is still some trouble with swallowing, water makes him gag, but this is an unbelievable start. The speech therapist also asked him to count to ten, he managed to count to five and all of the words were recognisable. This afternoon he was transferred to ward B7 which is a specialist stroke ward. He is in a room with three others, and was initially a bit confused by that. It can be stressful moving between wards. The specialist on sleep apnoiea came to see him (a respiratory consultant), and studied his breathing for about fifteen minutes. He reckoned that Simon was experiencing around three unusual patterns per minute, and he explained that each of these episodes causes the blood pressure to rise. If he has had this problem for a long time (he has always snored as long as I have known him) then it was a clear indicator of potential stroke. This is something that people, especially wives/girlfriends should be aware of.
The respiratory consultant has ordered a sleep study on him, and he was wired up for that this afternoon. They take all his essential readings while he is asleep and this is analysed for pattern and non-pattern. The consultant will then be able to tell us how we can best deal with this.
I took the laptop in and showed him the pictures from ICICTE also the picture of you all sending him a get well message. I couldn't get the movie to play, but he seemed to know what was going on.
Simon asked for his book, and wanted to hold it himself. I read over his shoulder with my finger underneath the words. We managed about two paragraphs before he drifted off.
Most popular today were the Pooh and Piglet soft toys that Asher and Mitch gave us as a wedding present. He had one in each hand as I left. He has some feeling in his right arm because he winced when someone took blood from him. I asked if it had hurt, he said yes, so I asked him to squeeze the nurses hand with his right. She said that she felt slight pressure. Later he gave Piglet a good squeeze. You cannot imagine how excited I am to see all of this unfolding. He has made so much progress in the space of one week.
Now he is on the proper stroke ward with all of the specialists, and specialist nursing, so we will be able to talk them about his care plan. My friend Helen, who runs the Hampstead hospital, came in again today and had a few words with his new ward sister. It is good to have this kind of support from inside the medical system. We aim to get him the best consultant.
It is possible that he may be able to have a shower soon and this will make him feel so good. To go without a shower or bath for one day would be unthinkable for Simon.
My sister, Margaret, and his mum, Shirley were both with me today to witness this progress. We felt like dancing.
Marian x
The respiratory consultant has ordered a sleep study on him, and he was wired up for that this afternoon. They take all his essential readings while he is asleep and this is analysed for pattern and non-pattern. The consultant will then be able to tell us how we can best deal with this.
I took the laptop in and showed him the pictures from ICICTE also the picture of you all sending him a get well message. I couldn't get the movie to play, but he seemed to know what was going on.
Simon asked for his book, and wanted to hold it himself. I read over his shoulder with my finger underneath the words. We managed about two paragraphs before he drifted off.
Most popular today were the Pooh and Piglet soft toys that Asher and Mitch gave us as a wedding present. He had one in each hand as I left. He has some feeling in his right arm because he winced when someone took blood from him. I asked if it had hurt, he said yes, so I asked him to squeeze the nurses hand with his right. She said that she felt slight pressure. Later he gave Piglet a good squeeze. You cannot imagine how excited I am to see all of this unfolding. He has made so much progress in the space of one week.
Now he is on the proper stroke ward with all of the specialists, and specialist nursing, so we will be able to talk them about his care plan. My friend Helen, who runs the Hampstead hospital, came in again today and had a few words with his new ward sister. It is good to have this kind of support from inside the medical system. We aim to get him the best consultant.
It is possible that he may be able to have a shower soon and this will make him feel so good. To go without a shower or bath for one day would be unthinkable for Simon.
My sister, Margaret, and his mum, Shirley were both with me today to witness this progress. We felt like dancing.
Marian x
Sunday, July 12, 2009
Day Six: on ward Q5
Simon had another chatty day, he was able to select a preferred CD from a stack of six, and listened to that for about a minute. I read to him for a while, having found a book in our bathroom left open on the page where he left it, so I started from a few pages back from there. I am not sure that he listened to the story, but seems to like the sounds of words. I tried to find talking books, and today could only come up with John Le Carre, A Most Wanted Man, I will try him on this later in the week. Shorter stories would probably be better, wonder if there are any Roald Dahl's on recording. Our local library has stacks of talking books so I will try to get in there tomorrow. He refused an offer to watch TV, I don't blame him, Sunday afternoon TV in Oz is notoriously bad.Most promising, he was able to nod agreement sometimes, and managed to tell me that he was desperate for a hot shower by pointing at the door repeatedly. He cannot be moved enough for a shower yet, but I washed him and cooled him down. He has his left hand tied down to the bed because he has pulled out three nasal gastric tubes, and they are very uncomfortable to replace. I couldn't find a stress ball, but came up with a miniature squashy AFL ball (like a rugby ball), this seems to be a good fit for his right hand. We have discovered that he is very allergic to elastoplast. His BP is better than it was, and his breathing sounds a lot better. Losing weight by the day, so I am buying things in two sizes. Hopefully they will have him in PJs soon.Shirley is still jet-lagged having spent 3 days travelling. However, she did our ironing today and said she enjoyed it. Simon and I smiled about that - ironing is the worst job in our house. Skippy is behaving strangely, he seems to think that Simon is locked in the shed. I have opened the shed regularly for him to inspect it. He sits on the sun-lounger outside waiting for Simon to appear.Expect by now many of you will be en route from Greece, or off on your summer vacations. Safe journeys all.Marian x
Saturday, July 11, 2009
Day Five: onto the ward
Simon's mum Shirley arrived at 6am, and we drove straight from the airport to see Simon. He was still in intensive care, and had had a restless night. However, he knew Shirley, and held her hand. They were both very tired so we came home for a while. Later I was informed that Simon would be going out to the ward which is great news, far less restrictions.
We saw him again in the evening, and he was awake and alive and kicking (literally). Very verbal with fantastic efforts at speech including some words and phrases that I could recognise. He definitely said 'Shirley', it came out as 'urly' but close enough for me to pick it up. He has started to give me thumbs up when he agrees with a suggestion e.g. talking books. In fact at one stage he was very agitated and I picked up the phrase 'I just want something to read'. No real interest in the Ipod except that he seemed to want to take it apart, I think he may have it confused with his mobile phone. Similarly, the wrist band on his hand - he looks at this as if it is a watch, so I tell him the time whenever he looks at that. I will take his phone and watch today, perhaps he is worrying where they have got to. If anyone gets an odd phone call, it could well be Simon, so don't hang up straight away!
Shirley has had a good long sleep, so I am hoping she will be well rested. Skippy (our cat) was pleased to see her, although he misses Simon and looks for him everywhere.
We continue to pass on good wishes and messages each day, and Simon often responds to your names. Thanks for the support from everybody.
Marian x
We saw him again in the evening, and he was awake and alive and kicking (literally). Very verbal with fantastic efforts at speech including some words and phrases that I could recognise. He definitely said 'Shirley', it came out as 'urly' but close enough for me to pick it up. He has started to give me thumbs up when he agrees with a suggestion e.g. talking books. In fact at one stage he was very agitated and I picked up the phrase 'I just want something to read'. No real interest in the Ipod except that he seemed to want to take it apart, I think he may have it confused with his mobile phone. Similarly, the wrist band on his hand - he looks at this as if it is a watch, so I tell him the time whenever he looks at that. I will take his phone and watch today, perhaps he is worrying where they have got to. If anyone gets an odd phone call, it could well be Simon, so don't hang up straight away!
Shirley has had a good long sleep, so I am hoping she will be well rested. Skippy (our cat) was pleased to see her, although he misses Simon and looks for him everywhere.
We continue to pass on good wishes and messages each day, and Simon often responds to your names. Thanks for the support from everybody.
Marian x
Friday, July 10, 2009
Day Four: intensive care
Simon had a sleepy day, he was really quiet and only opened his eyes a few times. He had some painkiller for his back pain which is probably making him drowsier. He remains in intensive care because his breathing is not quite independent. He was on a nicer breathing machine today with a less unfomfortable mask. His BP improved a little.
The word board became a word/picture board because I was advised that he might not be able to read at this stage but would have more luck with pictures, so I drew some little cartoons for: yes, no, pain, love, hot, music, tired, and go away. He used it to tell me he was hot and tired. He may go to the stroke ward tomorrow if all is well. Eventually, we hope to get him to Hampstead for rehabilitation, they have a great reputation. As luck would have it, one of my ex-doctoral students, Helen, is running the Hampstead hospital, and she came onto the intensive care ward to see us today. She was great at explaining things, and I know that when we get him to her hospital he will be in good hands.
Shirley will arrive here at around 6am Saturday (tomorrow), and I will take her straight to the hospital if she is up to it.
I realised today that I had not listened to any news, or read a headline, or even noticed the world going by. For all I know his holiness the Pope may now be a rabbi, and a one-legged man has won Wimbledon!
Thanks to everyone for words of encouragement and love,
Marian xx
The word board became a word/picture board because I was advised that he might not be able to read at this stage but would have more luck with pictures, so I drew some little cartoons for: yes, no, pain, love, hot, music, tired, and go away. He used it to tell me he was hot and tired. He may go to the stroke ward tomorrow if all is well. Eventually, we hope to get him to Hampstead for rehabilitation, they have a great reputation. As luck would have it, one of my ex-doctoral students, Helen, is running the Hampstead hospital, and she came onto the intensive care ward to see us today. She was great at explaining things, and I know that when we get him to her hospital he will be in good hands.
Shirley will arrive here at around 6am Saturday (tomorrow), and I will take her straight to the hospital if she is up to it.
I realised today that I had not listened to any news, or read a headline, or even noticed the world going by. For all I know his holiness the Pope may now be a rabbi, and a one-legged man has won Wimbledon!
Thanks to everyone for words of encouragement and love,
Marian xx
Thursday, July 9, 2009
Day 3: in intensive care
Simon had a lively morning. When I arrived at 10am he had been washed and shaved and looked quite beautiful. He was communicative, using his hands and a lot of voice, though no words yet. He gave me a hug with his left arm which made me feel so good. I tried him with the IPod, and he even managed to put an earphone into his left ear by himself. Before long he was unhappy with my choice of Bob Dylan, so we switched to b.b.king 'when you're weary'. He was wanting to manipulate the IPod himself, and got very frustrated with this, it really does take two hands, and the screen kept going dark before he could get anywhere. Because this was frustrating him I took the IPod away. I will try again and see if I can find a mounting for the Ipod so that it does not need to be hand-held. There is a limit to how much kit you can take into intensive care. I have been looking for a 'stress ball' to keep his right hand from clawing. I just cannot find the thing that I am looking for, it needs to be big enough to keep his hand almost straight, and it must not bounce because the IC staff will trip over it. Any ideas?
At around midday, Simon became very agitated and was 'shouting'. I realised that he could be in pain, he has had a bad back. This was a good guess, and so the nursing staff arranged some strong pain killer. This turned out to be a little too strong and sent him to sleep (although it meant that they were able to reinsert his feeding tube without him suffering the experience). During this sleep, Simon stopped breathing. He has been snoring for England the last 24 hours, and they had been quizzing me about whether this was normal. I said it was, and that is normal. It transpires that Simon has been suffering from sleep apnoeia, and that this is strongly connected to strokes. When he is asleep he sometimes stops breathing. So they had to put a breathing machine on him which involved a very tight and uncomfortable mask over his face. He is very unhappy about this and keeps trying to pull it off. I am hoping that tomorrow they will be able to take this away.
I have been trying to figure out a way to help him to communicate with us, and my task this evening is to create a board with words that he can point to. I am just trying to think of the appropriate range of words and phrases that I need e.g. I am in pain, I am tired, Clear Off etc. Any suggestions here would be jolly helpful.
I have told Simon all about the conference news, and passed on all of your good wishes. His mum, Shirley, is enroute, and will leave London for Singapore this evening.
Thanks for the lovely comments left here, I will read them all to Simon in the morning.
Love Marian xx
At around midday, Simon became very agitated and was 'shouting'. I realised that he could be in pain, he has had a bad back. This was a good guess, and so the nursing staff arranged some strong pain killer. This turned out to be a little too strong and sent him to sleep (although it meant that they were able to reinsert his feeding tube without him suffering the experience). During this sleep, Simon stopped breathing. He has been snoring for England the last 24 hours, and they had been quizzing me about whether this was normal. I said it was, and that is normal. It transpires that Simon has been suffering from sleep apnoeia, and that this is strongly connected to strokes. When he is asleep he sometimes stops breathing. So they had to put a breathing machine on him which involved a very tight and uncomfortable mask over his face. He is very unhappy about this and keeps trying to pull it off. I am hoping that tomorrow they will be able to take this away.
I have been trying to figure out a way to help him to communicate with us, and my task this evening is to create a board with words that he can point to. I am just trying to think of the appropriate range of words and phrases that I need e.g. I am in pain, I am tired, Clear Off etc. Any suggestions here would be jolly helpful.
I have told Simon all about the conference news, and passed on all of your good wishes. His mum, Shirley, is enroute, and will leave London for Singapore this evening.
Thanks for the lovely comments left here, I will read them all to Simon in the morning.
Love Marian xx
Wednesday, July 8, 2009
Day Two: Simon in intensive care
I do not know who will be reading this, but I hope that this will be helpful. I will try to update regularly on Simon's recovery. Here is our story so far:
Simon was driving home from Adelaide city on Monday evening at around 5pm. He managed to steer his car to the side of the road, got out of the car and fell down in the road in the middle of rush hour traffic. Some people must have helped him and called the police. We can only guess what had been happening in the two or three hours before his collapse. It is evident that at some stage he had pranged the car, I also know that he had been trying to buy a pair of trousers to take with him to Greece the next day where he was about to give an important keynote speech at a conference. He evidently failed to find any trousers. These two things plus rush hour traffic may have been enough to send his blood pressure up, plus the stress of going on an important trip the next day. The keynote speech that he was about to give was the pinnacle of his career so far. The police called me at 5.15pm and I rushed to the hospital. He has a very large bleed on the left side of his brain and this has paralysed the right side of his body, and he is unable to speak or to swallow. He is in and out of consciousness, but can certainly hear us, and he responds to some basic instructions from the nursing staff to squeeze their hand (with his left) and wriggle his left leg. I think he knows who we are. Today he managed to communicate to me that he was in discomfort from a cord that had got wrapped around his midrift and was digging in to his skin. This was a fantastic effort. Later he used his hand to indicate that he wanted the curtains closed. Then he nodded when asked if he wanted the light turned off. You may not realise how difficult these things are, or how pleasing. When his mum, Shirley, telephoned the ward the nurse took the phone to Simon so that he could 'speak' to her, he made some noises and seemed to understand her end of the telephone conversation. Shirley is flying tonight and will arrive in Adelaide on Saturday morning. It is a long and difficult journey for her, but I am so glad that she is coming. We are now two days into this experience, and the doctors cannot tell me with certainty that Simon will pull through, although each day that passes brings greater hope. His blood pressure is still high and difficult to control, and this is not good for the pressure inside his brain. I worry about all of the things that must be going on in his mind (which was extraordinarily active) and how anxious he must be feeling. I tell him everything that is going on, all the actions that we have taken to manage his work commitments, and every scrap of news. My sister and brother-in-law, Margaret and Gerry have been a tower of strength for me and I thank them from the bottom of my heart. I would have been bereft without them. Simon is in the Royal Adelaide Hospital in the ICU. Unfortunately, they do not allow flowers or cards because they get in the way. I am not really up to taking phone calls at the moment, this is the easiest way for me to talk to you without becoming repeatedly emotional. I hope you will understand. Margaret is fully informed and can probably talk on the phone although she has been run ragged these last few days as well. We need your prayers, so keep them coming. We have sent his keynote speech and his powerpoint slides on to the conference organisers in Greece, and we hope that someone there will be permitted to present the speech on his behalf. It was a beautiful piece of work, and the world should hear it. I will keep in touch Much love Marian xx
Simon was driving home from Adelaide city on Monday evening at around 5pm. He managed to steer his car to the side of the road, got out of the car and fell down in the road in the middle of rush hour traffic. Some people must have helped him and called the police. We can only guess what had been happening in the two or three hours before his collapse. It is evident that at some stage he had pranged the car, I also know that he had been trying to buy a pair of trousers to take with him to Greece the next day where he was about to give an important keynote speech at a conference. He evidently failed to find any trousers. These two things plus rush hour traffic may have been enough to send his blood pressure up, plus the stress of going on an important trip the next day. The keynote speech that he was about to give was the pinnacle of his career so far. The police called me at 5.15pm and I rushed to the hospital. He has a very large bleed on the left side of his brain and this has paralysed the right side of his body, and he is unable to speak or to swallow. He is in and out of consciousness, but can certainly hear us, and he responds to some basic instructions from the nursing staff to squeeze their hand (with his left) and wriggle his left leg. I think he knows who we are. Today he managed to communicate to me that he was in discomfort from a cord that had got wrapped around his midrift and was digging in to his skin. This was a fantastic effort. Later he used his hand to indicate that he wanted the curtains closed. Then he nodded when asked if he wanted the light turned off. You may not realise how difficult these things are, or how pleasing. When his mum, Shirley, telephoned the ward the nurse took the phone to Simon so that he could 'speak' to her, he made some noises and seemed to understand her end of the telephone conversation. Shirley is flying tonight and will arrive in Adelaide on Saturday morning. It is a long and difficult journey for her, but I am so glad that she is coming. We are now two days into this experience, and the doctors cannot tell me with certainty that Simon will pull through, although each day that passes brings greater hope. His blood pressure is still high and difficult to control, and this is not good for the pressure inside his brain. I worry about all of the things that must be going on in his mind (which was extraordinarily active) and how anxious he must be feeling. I tell him everything that is going on, all the actions that we have taken to manage his work commitments, and every scrap of news. My sister and brother-in-law, Margaret and Gerry have been a tower of strength for me and I thank them from the bottom of my heart. I would have been bereft without them. Simon is in the Royal Adelaide Hospital in the ICU. Unfortunately, they do not allow flowers or cards because they get in the way. I am not really up to taking phone calls at the moment, this is the easiest way for me to talk to you without becoming repeatedly emotional. I hope you will understand. Margaret is fully informed and can probably talk on the phone although she has been run ragged these last few days as well. We need your prayers, so keep them coming. We have sent his keynote speech and his powerpoint slides on to the conference organisers in Greece, and we hope that someone there will be permitted to present the speech on his behalf. It was a beautiful piece of work, and the world should hear it. I will keep in touch Much love Marian xx
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