I arrived to see Isobel at 4pm. I had intended to see if she would have a drink well before tea arrived but was intercepted by a nurse who said that she had just finished giving Isobel a very late lunch and she had fallen fast asleep after. Isobel had little to eat or drink earlier in the day and it had not been possible to wake her at the normal lunchtime. Isobel was certainly very soundly asleep, I sat with her and read the book I had brought with me (the biography of Paul Dirac) for an hour.

When tea arrived it was somewhat difficult to wake Isobel. It took about ten minutes before she took the first full mouthful, but thereafter she ate the first course, scrambled eggs and tomatoes, fairly quickly and without problems. Isobel was again rather unresponsive, although slightly better than in the past few days. She did not say anything in reply to conversation. Both her arms looked OK.

After a break of only about five minutes, Isobel ate her yogurt dessert easily and quickly. She also drank a beaker of blackcurrant, but afterwards was very tired and fell asleep before I could start reading to her from The Hobbit. I washed Isobel's face but she slept on. I sat with her until a quarter past seven before coming home. I formed the impression that despite the eating problems and sleepiness that Isobel was a little better than yesterday.

This was a bad day all round, including the lawn mower exploding in the afternoon. I spoke to Rosemary's husband by telephone, she told him that Isobel was sleepy and unresponsive throughout her visit yesterday.

I went in to see Isobel at 5pm. The Speech and Language Therapist, Victoria, was already there. Isobel had eaten little during the day apart from pots of balanced supplement. She had drunk moderately well. I showed Victoria the record of food intake. After a few minutes when tea had not yet appeared, she mentioned that her hired car had to be back at Gravesham Hospital by 6pm! I spoke to Edmond and he got Hayley to produce Isobel's tea within two minutes, Victoria then had five minutes to observe me feeding Isobel before she left - this amounted to two mouthfuls (which was much quicker than yesterday). Victoria expressed the view that her visit had still been useful, apparently she had been working nearby during the afternoon. I said that I felt there were more problems with eating in the last week. I gave her a brief account of the nutritionist's comments last week. It was agreed that she would see Isobel for a full meal next Thursday lunchtime, arriving at 11.50am. This does of course run the risk of not being able to wake Isobel.

After Victoria had left I continued to feed Isobel her main course. She had a number of coughing and spluttering incidents and these seemed to be eased by intercalating mouthfuls of thickened blackcurrant squash between mouthfuls of puréed meat and vegetables. The same procedure was used for dessert of yogurt. I believe part of the problem may be that Isobel has a slight cold again. Eventually the main course, dessert and drink were finished; but Isobel was very tired.

I read a few pages of her book to her but she soon fell fast asleep. I manipulated and massaged her right arm which showed signs of swelling again. For some weeks she has had a slight intermittent tremor of the left arm, this has increased in frequency over the past week and there seems to be a tendency for the left hand to lock into a claw like grip in the same way as the right hand a few months ago. Although Isobel has short sequences of a few bad days followed by a few less bad days, I feel her underlying condition is now significantly worse than a week ago. I sat with Isobel for a short while as she slept, but it seemed unlikely that she would wake again for some time, I left just before half past seven.

I was at the Land Registry this afternoon and did not get in to see Isobel until 7pm. She had been very tired all day and as I entered the Centre the nurse intercepted me to say that she had just left Isobel after a protracted time getting her to take a drink, she had fallen fast asleep and would be too tired to eat or drink anything for a while.

Isobel had eaten only yogurt for breakfast, but had a pot of balanced supplement later. She had eaten only a small part of her lunch but later ate another pot of balanced supplement, the same situation occurred at tea time. Rosemary visited her in the afternoon but I have not yet spoken to her.

Isobel remained fast asleep for over an hour. When she eventually showed signs of sleeping more lightly I woke her. Isobel was very unresponsive, she did not speak and on the few occasions when her eyes opened they stared blankly. As Isobel has taken so little food today I fed her another pot of balanced supplement; this took just over an hour and Isobel fell asleep exhausted afterwards. I washed her face and sat with her for a while, but it was clear she would not wake for some time. The night shift carers will try to get her to take another drink later, but I think they may not succeed. I left at a quarter to ten.

Having been held up by roadworks on the way in, I did not reach the Centre until a quarter past five, just as tea arrived. Isobel was fast asleep. Isobel had been very sleepy all day and difficult to rouse. She had missed breakfast and only eaten a few spoonfuls of her lunch. She had eaten a pot of balanced supplement later in the morning and another one in the afternoon. She had drunk sufficiently during the day. The Balls (Chris's parents) had been in during the afternoon to see Isobel but I have not yet spoken to them.

It took ten minutes before I could get Isobel to open her mouth for food. Her teeth were clenched shut, although she appeared to be trying to open her mouth. She was extremely sleepy, falling deeply asleep while eating and needing reminders to empty her mouth. When her mouth opened, she had no trouble taking food from the spoon; nor did she have trouble swallowing the food, apart from the tendency to fall asleep. Eventually she ate all of her main course, dessert and a beaker of blackcurrant squash, but this process took over an hour and a half and left Isobel exhausted. For the past few weeks it has often taken a little while for Isobel to take the first full mouthful, but after that she has speeded up and eaten continuously. Today it was as if she was starting the meal again every few mouthfuls.

My efforts to talk to Isobel today received no response; she was desperately tired. I sat with her for a little more than an hour, hoping she would wake but she remained very soundly asleep. I had hoped she would eat another pot of balanced supplement tonight, but it looked unlikely that she would wake. I finally gave up and left at 8pm.

I may not get in at the usual time tomorrow to see Isobel as I am in Croydon tomorrow afternoon.

The new Speech and Language Therapist, Victoria, had provisionally indicated she would come in today at tea time to see Isobel eat. She 'phoned this morning to say that she would come in at 4.50pm on Thursday.

I went in to see Isobel a few minutes after 5pm. She was asleep when I arrived. Isobel could not be woken at breakfast time, however later in the morning she woke and ate a pot of balanced supplement. She ate her lunch and another pot of supplement during the afternoon and has drunk well.

Isobel had got part way through a beaker of blackcurrant squash when tea arrived. She ate the main course of scrambled egg and tomatoes quickly and finished the blackcurrant squash. She also ate dessert very quickly and easily. She was not able to make any replies today, but listened as I updated her on events at home. She was rather tired and dozed for a short while. It was a pleasant evening with blackbirds excavating in the leaf litter outside Isobel's window and rabbits grazing on the grass a few yard away, but sadly all of this is lost on Isobel.

I woke Isobel shortly after half past six and she ate a pot of balanced supplement slowly but without problems. As far as I could tell she did not want her book read to her; but she seemed interested for a few minutes when I gave a running commentary on a snooker match on television, although she did not open her eyes for most of the time. Isobel drank a beaker of orange squash very slowly, was obviously tired, and fell soundly asleep after. I left at 7.40pm.

I went in to see Isobel at 5pm. She was soundly asleep when I arrived and had been deeply asleep most of the day. She ate half of her porridge for breakfast but all of a pot of balanced supplement after. She ate the main course of her dinner, but only a few spoonfuls of her dessert as she was falling asleep. Later in the afternoon she ate another pot of balanced supplement. In the brief periods when she was awake she had several drinks.

Late last night she had two more drinks after I had gone home; we are watching her drinking carefully but for much of the time it is no problem, the difficulties arise when she loses fluid through vomiting on days when she eats and drinks little, one day is bearable but a lot of effort must be made the next day to get fluid into her. In the final stages it is likely she will be on a drip for hydration.

Isobel was not difficult to wake. I began giving her a beaker of blackcurrant squash but tea arrived almost at once. Isobel ate the main course without difficulty although she was clearly very tired. She also finished the blackcurrant squash. We talked for a few minutes in order to give her a respite from swallowing. Isobel was not able to make any replies today. I slightly over-thickened the yogurt dessert but it was still very easy for Isobel to eat.

After another break, Isobel tried to have a glass of pineapple juice, but she was very tired and although she finished the juice it took forty minutes to drink. Immediately after she fell very deeply asleep. After washing her face I left at about a quarter past seven. Yesterday the Micra had petrol put into it for the first time since 2008.

Iona was here for much of today, suffering from food poisoning, so this altered our plans for a long afternoon visit. My brother and Liz went in mid-afternoon and found Isobel awake and more responsive than on their last few visits.

I went in at 5pm. Isobel had only a pot of balanced supplement for breakfast but ate it all. She was very sleepy and this continued until lunchtime when she could not be woken at all. She did however have several drinks early in the day. It seems she missed lunch as well yesterday. At teatime I fed Isobel her main course and strawberry yogurt dessert. Both of these were handled without any difficulty and fairly quickly. She drank a beaker of blackcurrant squash fairly quickly, but was tired by the end of it and dozed off after. I left at a quarter past six.

After dropping Iona back at her house I returned to the Centre at 7.45pm. Isobel was dozing lightly and woke as I moved the plants back to their overnight positions. The zygocactus is looking splendid but will probably fade in a few more days. Isobel drank half of a beaker of orange squash, then ate most of a pot of balanced supplement, then finished the drink and finally polished off the pot of supplement. We talked for a while, Isobel was able to make some yes or no responses. She confirmed she was not in pain. I read a long section of her book to her. I manipulated and massaged Isobel's right arm, I am certain now that there is significant muscle wasting in the arm. Isobel drank another beaker of orange squash; she has not been short of fluid today! There seems to be a tendency to miss lunch more often, but whether it is a long term trend or just the day to day variation we have been seeing for some months is difficult to judge at the moment. Isobel fell asleep and I left at 9.20pm.

I went in to see Isobel a few minutes after 5pm. Isobel was awake when I arrived. A nurse was with her and reported that she had a good day. She ate all her breakfast, had not been sick, but had eaten only part of a pot of balanced supplement this morning. It is thought that she ate her lunch, but the record had not been completed and the person who fed her could not be asked.

I fed Isobel her tea with no problems. She drank half a beaker of tea after and ate a pot of balanced supplement. We talked for some time, she was able to make a few yes or no responses to questions. Isobel is not in any pain. She was pleased to hear that I had a long telephone conversation with her school friend Gaynor who is recovering well from illness. Isobel did not want me to read to her. She drank a beaker of blackcurrant squash and then went to sleep.

I felt much happier with Isobel's general performance today, she seemed relaxed and stable. There was little sign of the congestion that has troubled her for some days. I left the Centre at half seven.

Iona and I went in to see Isobel at 2pm. Isobel had eaten most of her breakfast and a pot of balanced supplement after, but was then slightly sick. The air mattress had developed a fault and the transfer to a conventional mattress triggered the vomiting. She did not eat dinner but ate a pot of balanced supplement early in the afternoon. She had drunk fairly well during the day. She drank a glass of blackcurrant squash without any problems soon after we arrived but was very sleepy. She is now on a regime of regular three hourly turning as a result of the mattress change and the nurses turned her and changed her pad at 3pm; the doctor arrived shortly after.

The doctor listened to Isobel's chest with his stethoscope and confirmed that her lungs were clear, there was no sign of a chest infection but she had a slight cold. Phlegm from the cold may have made a mechanical contribution to the vomiting yesterday. Her overall condition was what was to be expected from her illness although the rate of decline was apparently slow. He could not speculate on the time she would survive, it could be days or weeks, or longer. She did not seem to be in any discomfort from the infection being treated with antibiotics. She continues on the reduced level of steroids.

Isobel was very soundly asleep after the doctor left. Iona and I sat with her until tea arrived a couple of minutes before 5pm. At the same time Isobel's dietitian, Patricia, arrived. While I fed Isobel, we discussed her nutrition. She has lost 9kg since she arrived in the Centre. She understands that Isobel frequently misses one meal a day (usually lunch) and has on average between two and three pots of balanced supplement. We agreed that wasting of muscle mass was occurring, but this did not unduly affect Isobel's sedentary lifestyle. The rate of weight loss was not alarming, but some changes could be made to increase the average calorie content of her food by adding fat in the form of butter and cream. This would compensate for any tendency for feeding difficulties to reduce the mass of food taken in. Additionally, small pots of high calorie supplement could be added to her food. These were only 30ml each but would significantly increase the energy value of each meal. She was happy with the way Isobel was eating.

After Patricia had left, Isobel finished her tea and then ate a pot of balanced supplement. She was very tired and fell soundly asleep as soon as she had finished eating. I washed her face and settled her down. Iona and I left at 6pm, stopping for sausage and mash in the Chequers on the way home.

Isobel was very poorly today.

She was sick before breakfast and remained on the verge of vomiting until the afternoon. She ate no food during the morning and afternoon. Only with a lot of difficulty was she given her medication, and the small amount of fluid with this was all that she drank before the evening. She was coughing and retching at intervals.

I arrived at 5pm to find that the nurse who had started to try to feed her tea was clearing up the mess after the first few mouthfuls had been sprayed back. I took over feeding but the first mouthful was coughed up (rather neatly without much mess), as was the second. It was clear that at that time Isobel was not able to eat anything. Even when not given food she was retching every few seconds. I abandoned the idea of tea and allowed Isobel to go to sleep. The doctor will see Isobel tomorrow. She seems to have a runny nose again, maybe a bit of a cold. There were noises from her chest consistent with phlegm from a cold, they would also be consistent with a chest infection. She is at risk from lung infections caused by taking food or drink into the lungs, but has not been observed to misdirect food or drink. My own view is that she does not have a chest infection.

I woke Isobel just after half six with the aim of giving her some fluid in the most easily managed and palatable form - thickened squash. Over the course of forty minutes she drank all of a beaker of blackcurrant squash; with long pauses between mouthfuls. She had no problems and only retched once, slightly, towards the end.

By the end of the drink Isobel appeared more awake. She was able to confirm that she did not have any pain. She also confirmed that she would like some of The Hobbit read to her; I did this for over half an hour during which time we reached the half way stage in the book. Isobel dozed for a few minutes while I re-arranged some items in the room. Isobel confirmed she would like another drink. I gave her a beaker of orange squash. Once again it was drunk slowly and carefully, but this time there were a few coughs and more retching during the second half of the drink, however it was finished and kept down. I was keen to get as much fluid into her as possible, but think that she was too close for comfort to being sick again.

I put some football on the television but Isobel paid no attention to it, her rather odd interest in sport certainly seems to have ended. After a few minutes she fell restfully asleep, with no retching. The night shift nurse was very relieved that she had taken fluid. She will try to get Isobel to eat a pot of balanced supplement later. I left at half past eight.

There is no doubt that for much of the day Isobel cannot have been comfortable. In the evening she was relaxed and able to say what she wanted.

I went in to see Isobel a few minutes after 5pm. She did not have a good start to the day. She was sick at breakfast time and did not eat her breakfast. She did eat a pot of balanced supplement later in the morning but could not be woken for lunch. She ate another pot of balanced supplement during the afternoon but was still sleepy. Isobel began the course of antibiotics today, she shows no sign at all of discomfort from the infection. As the medication had to be changed from tablets to liquid form, she did not take the first dose until this afternoon.

When I arrived one of the carers was just beginning to get Isobel to eat the first course of her tea, scrambled eggs and baked beans (the beans of course are liquidised). In accordance with yesterday's advice from the Speech and Language therapist, the carer had thickened the dessert of yogurt, but he thought he had rather overdone it as the yogurt had gone beyond custard to the pudding consistency (this is easily done, as each food or drink reacts differently to the thickener and thickening takes some time to take effect). He suggested adding another pot of yogurt to dilute the thickening, and when we did this it produced just the right thickness. I took over feeding and Isobel ate the first course with no problems. She needed a rest before tackling the dessert but ate it completely despite it being twice the normal amount. After a short interval Isobel also ate a pot of balanced supplement before falling asleep for a short while.

When she woke I gave her a beaker of blackcurrant squash and was part way through this when Miranda arrived at a quarter past seven. Isobel finished the squash while Miranda talked to her and arranged some flowers she had brought with her. Miranda left at ten past eight. I cleaned up Isobel's eyes and washed her face. The right arm did not look so wasted today as it had done yesterday, it is difficult to judge. Although Isobel had not been able to say anything to Miranda, she indicated that she would like some of her book read to her and I did this for a quarter of an hour before Isobel fell asleep. I left at half past eight.

An appointment had been arranged for Isobel to see the new Speech and Language Therapist at tea time on Thursday. I was therefore surprised to get a phone call at 1pm to say that Isobel would be seen this afternoon. A further phone call arranged a meeting at a quarter past two.

Isobel ate most of her breakfast and a pot of balanced supplement. She also ate all of her lunch and dessert. It was no surprise therefore to find she was very soundly asleep when I arrived. The new S&L therapist, Victoria from Auckland in New Zealand was already there with her supervisor. A complete second lunch had been provided! After ten minutes I gave up trying to tempt Isobel into waking and we settled for discussion. They seemed happy with my description of how Isobel eats. We seem to be in a sort of stable period again at the moment; if Isobel wakes she will eat fairly easily although she does tire after about one and a half items. Her swallowing is probably very variable. I can't detect with certainty when she swallows, but some (<10%) swallows are very clear and powerful. Isobel often takes a number of swallows to clear her mouth but will indicate that she has not done this by refusing to open her mouth. If her mouth is empty, she will usually open it in response to the stimulus of a touch on the lip from a spoon; but sometimes she will open her mouth in response to a verbal request. I said that I could no longer discern Isobel's preferences for food, she will usually eat anything if she is ready but does seem to respond to talking about what is going to be fed to her. In my opinion, she seemed keenest to eat fruit yogurt, although this is rather thin and runny and more difficult to feed to her. The therapists thought ordinary yogurt possibly too thin and potentially dangerous. They will discuss alternatives with the Centre staff. They asked if Isobel chewed the little lumps of fruit in the yogurt; I said that she usually did, but she tended to chew any food even if it did not need chewing. They were happy with Isobel's overall level of nutrition, they are aware that she often misses one meal a day (most often lunch) and often has two not three pots of balanced supplement. I commented on the difference in thickness in the different flavours, the vanilla (which smells delicious) is thin compared to the much more solid chocolate. They confirmed they were aware of this, it might be a good idea in future to stick to chocolate rather than seeking variety. I made up a beaker of drink to indicate the amount of thickening used, this was satisfactory. I mentioned the odd behavior of tea when thickened with maize starch, the supervisor said that she believed this was due to a reaction between the starch and the fat in the milk in the tea. It could be reduced by thickening the tea before milk was added, then adding milk at the last minute before it was drunk - but would still happen after some minutes. I expressed the view that this was not worth doing for Isobel, she did not seem to particularly want hot drinks and orange and blackcurrant squash were very palatable when thickened. It was agreed that no more could be done today. Victoria would come back at tea time next Tuesday in order to see Isobel eating. We all left at just before 3pm.

I went back in to see Isobel a few minutes after 5pm. Her tea was ready a couple of minutes later and she ate the first course with no problems. She ate part of the yogurt dessert, then had a rest for a few minutes before resuming and finishing it. While Isobel dozed for a few minutes I massaged and manipulated her right arm. This is now showing distinct signs of wasting compared to its swollen state a few months ago, Isobel remains of course unable to move it at all. Edmund confirmed that the swab sample taken last week showed signs of an infection and Isobel would start a course of antibiotics tomorrow morning. After a short while I woke Isobel and she drank a large (300ml not 200ml) beaker of blackcurrant squash, although she tired towards the end. Overall she has eaten and drunk well today. Isobel was able to give some yes and no responses to questions today. She indicated that she would like some of her book read to her and I read half a dozen pages before she fell very soundly asleep. I watered the plants and went home a few minutes before 8pm.

Isobel had a good end to yesterday, eating all her tea. This morning she ate most of her porridge and a pot of balanced supplement but could not be woken for her lunch.

I went in to see Isobel at 5pm. Before tea arrived she drank most of a beaker of squash. She ate the first course of her tea quickly and without problems. She then finished off the beaker of squash, then ate a pot of yogurt. Although she was eating well, she was rather unresponsive and I did not get any reply to questions. She seemed to be comfortable but had a bit of a runny nose and sneezed several times. She is not able to blow her nose when a tissue is held for her.

Isobel fell asleep for about half an hour. When she woke she drank a beaker of juice with ease, but then fell soundly asleep again. I sat with her for half an hour but she showed no sign of waking and I left at a quarter to eight.

I went in to see Isobel at mid-day. The zygocactus is now in bloom and although it does not bear the huge number of flowers in had on its previous visit, it is still attractive. Isobel had eaten most of her porridge for breakfast but not much of a pot of balanced supplement later. She had not had her late morning medication as she could not be woken. She was asleep when I arrived.

Lunch arrived within a few minutes, as I was trying to wake Isobel. She ate all of a large first course of meat and three veg without the slightest problem. We moved onto the strawberry yogurt dessert; Isobel tackled this briskly but soon showed sighs of tiredness. Isobel finished the dessert and had a few minutes break while I talked to her; she was not able to make any reply. Both her arms look OK. I have noticed a tendency to curl the fingers of the left hand this week and have straightened them each day. She retains the ability to lift and move the left arm.

I gave Isobel a beaker of blackcurrant squash to drink, this was thickened to the optimum consistency and was drunk reasonably quickly without any undue problems. I discussed the morning's medication (which included the phenytoin anti-fitting medication) with the nurse, she will try to give this to Isobel a little later. Isobel did not seem interested either in me reading to her or having the television on. She fell soundly asleep within a few minutes and I left at twenty to two.

Iona went in to see her mother in the late afternoon, but as I was out at the "Friends of Sidcup Police Station" quiz tonight I have not yet had a report from her.

Isobel had a fairly good day today.

She ate most of her breakfast, and followed this with a pot of balanced supplement. Helena, who shared a room with Isobel after her operation in Kings College Hospital and is now a qualified nurse, came in to see Isobel at lunchtime. Isobel was being fed by one of the carers and finished her lunch. She was unable to reply when Helena talked to her but remained awake.

I went in to see Isobel just after five o'clock. She was asleep when I arrived but woke easily and begun to drink a beaker of blackcurrant. When tea arrived Isobel switched to the main course which was much larger than usual but eaten easily and quickly. Isobel then ate peach yogurt for dessert and finished the beaker of squash. The pattern of the last few days continued, Isobel was tired but coped well with food and drink. Isobel was pleased to hear that matters relating to her pension seem to have been finally resolved. Isobel confirmed that she was not in pain. Isobel signed her proxy voting form, managing a much clearer left handed signature than I had expected, Edmund the charge nurse signed as medically qualified supporter.

While I was talking to Edmund, Isobel dozed off but awoke when I returned to the room and spoke to her. She ate a pot of balanced supplement although obviously tired. She fell soundly asleep as soon as she had finished eating. As she had eaten and drunk well and showed no signs of waking soon, I went home just before half seven.

Today was shower day for Isobel. These are of course unavoidable and are now given at longer intervals but often have the effect of tiring Isobel and disturbing most of the day. Isobel had started the day well but was sick immediately after the shower was given. She did have a pot of balanced supplement later and a drink but fell very soundly asleep for the rest of the morning.

Iona took Euan in at mid-day. They arrived as one of the carers was trying to wake Isobel for her lunch; it was impossible to do so and Isobel slept throughout their visit. When they had been with their mother for about half an hour Ellie arrived, having gone into the care home forming the other half of the building containing the Neurodisability Centre and therefore arriving at Isobel's room from an unexpected direction which seemed to confuse Euan! I gather the three of them sat with Isobel and chatted for half an hour or so, all leaving at the same time.

I went in to see Isobel at a quarter past five. Dallas and Mike were already with her (having left Alice parked in the car outside!). Isobel was sort of half awake, with her eyes sometimes open but not responding much. We chatted for a few minutes until tea arrived, then I began feeding Isobel the first course of scrambled eggs and tomatoes. Isobel ate well and fairly quickly and it was soon finished. Dallas and Mike went to take Alice home, I had completely failed to see her in the car park. Isobel moved on to eat a small bowl of yogurt without any problems. We tried some thickened tea - I wanted to get her to take two drinks and it helps to have two different types of drink. Isobel had drunk three quarters of the tea before it began to liquify again and become both unpalatable and difficult to handle so the remainder of the beaker was left not drunk. Isobel was tired and dozed off for a quarter of an hour.

When Isobel woke she ate a pot of balanced supplement without difficulty. Today was another day on which Isobel was very tired but managed to eat well. Swallowing was variable, sometimes being strong and decisive but often being weak and needing several attempts to clear her mouth. The new speech and language therapist will come to see Isobel at 5pm next Thursday. I tried to talk to Isobel about how she felt but she was too tired to give any response. She fell soundly asleep.

I woke Isobel after almost half an hour. She drank a full beaker of blackcurrant squash very easily. I washed her face and tidied the room; then settled down to read to her. After about a quarter of an hour she fell asleep. I left at 8pm.

I went in to see Isobel just after 5pm. She was awake and a nurse was trying to feed her a pot of balanced supplement, having had no success at trying to feed her the main puréed course. I took over and spent a minute ensuring she was fully awake. She was clearly very tired. She managed to eat the main course fairly quickly without any problem and moved on to finish the pot of balanced supplement. Although Isobel ate moderately quickly without any problem she was very tired and fell deeply asleep as soon as she finished eating. Isobel had ate her breakfast and then a pot of balanced supplement but had missed lunch as she could not be woken.

I woke Isobel after a quarter of an hour, she drank a beaker of blackcurrant squash fairly quickly and without any real difficulty. I asked her if she would like me to read to her, she replied "no" and immediately fell fast asleep again; frustrating attempts at further conversation. She had drunk very little during the day and I was keen to get her to drink some more. I had foreseen this situation might arise and occupied myself for the next hour with some correspondence I had brought with me, while Isobel slept very soundly. I also manipulated and massaged Isobel's right arm; I worry about it being completely immobile, although it looked fine today.

I woke Isobel after an hour and helped her to start drinking a beaker of orange squash. A nurse arrived and gave Isobel some medication, and adding the paracetemol solution to the beaker of orange. Isobel drank the rest of the orange without any problem. She listened to me talking for a few minutes but made little response before falling asleep again. I left at twenty past eight.

I went in to see Isobel just after a quarter past five. I took in one of the little sedum plants Isobel had from the hospice, thinking it might suit her window sill. She was asleep when I arrived. She had eaten most of her breakfast and had a pot of balanced supplement in the morning. However she had been deeply asleep for most of the day and had missed her lunch. In the morning a urinary swab and a urine sample by catheter had been taken and sent for analysis. The nurses are convinced she has an infection but it seems to cause her no discomfort or produce any other observable effect and must be confirmed by analysis. Isobel was not very responsive and did not reply to questions today.

I helped her drink a beaker of blackcurrant squash. Tea was very late and did not appear until just before 6pm. Isobel ate her tea with no problems, although clearly very tired and consequently rather slow. I have not given Isobel tea to drink for some time, as it seems to me far less palatable than all other thickened drinks as well as losing viscosity after a few minutes. As ready thickened tea appeared with the meal I offered it to her and she drank half of it very slowly until it became very runny and we stopped. During a break of a few minutes I talked to Isobel but got little response.

Isobel took a very long time to eat a pot of balanced supplement but eventually finished it. She fell asleep immediately after and slept for almost three quarters of an hour. When she woke she still seemed rather tired but drank a beaker of orange squash without any difficulty although rather slower than usual. She was not able to indicate whether she wanted her book read to her, but in any event fell asleep again almost at once. I sat with her for a short time before leaving at just before nine o'clock.

I went in to see Isobel at 5pm; she was asleep when I arrived. I brought in the zygocactus, it has come back into bud very quickly although it will only have about a quarter of the mass of flowers it had last time. She had indeed missed her lunch yesterday, she had eaten part only of her tea but had a pot of balanced supplement in the evening. Today she had not been sick; had eaten all her breakfast and a pot of balanced supplement; and had eaten both courses of her lunch. Isobel started eating a pot of balanced supplement in the mid afternoon but had fallen asleep after only a few spoonfuls. Isobel has drunk well today. When Isobel's incontinence pad was changed this morning a slight trace of blood was found; it is feared by the doctor that she has an urinary tract infection, a swab will be taken on her next visit. There is no sign that this is causing Isobel any discomfort.

When Isobel's tea arrived she was easy to wake. She ate the first course easily enough, but was clearly tired while eating her dessert. After she had finished her dessert we took a few minutes break before finishing the pot of balanced supplement started earlier in the afternoon; after this she was very tired and slept for almost an hour. I woke Isobel and she confirmed that after a drink she would like her book read to her. Isobel gave a few yes or no answers during conversation today. Isobel drank a beaker of blackcurrant squash with more than usual difficulty. She took a very long time to finish it, but I am certain this was only attributable to tiredness. I began to read to Isobel from The Hobbit, but after only two pages she fell fast asleep. I left the Centre at twenty past eight, narrowly avoiding running over a number of rabbits on the drive.

When I telephoned Isobel's mother and sister to update them, I spoke to Jessica and was surprised to learn that she had visited Isobel on Saturday; she found Isobel asleep and unresponsive throughout her visit.

This is a combined blog for Saturday and Sunday; I have not been able to go in and see Isobel, normal service will hopefully be resumed tomorrow.

Iona has been in to see her mother on both days. Saturday was a good day for Isobel. She ate most of her breakfast and all her lunch and tea, as well as several pots of balanced supplement; she also drank very well during the day. Isobel was asleep all the time Iona was at the Centre. Sunday was a more difficult day. Isobel did not finish her breakfast and was sick afterwards. She appears to have missed her lunch as she was asleep. Iona could not check what happened at tea time (shortly before she arrived at the Centre) as the record had not been updated and the staff responsible for her tea were not around. Isobel was relaxed and asleep while Iona was there, although her left arm and hand were moving around. More detail tomorrow.

I retrieved the Micra from Plumstead this afternoon, it sailed through the MOT and needed only routine work done on it. I drove it in to the Centre and saw Isobel just before 5pm.

She had only eaten part of her breakfast, but had a pot of balanced supplement later. She could not be woken at lunchtime and did not eat any of her lunch. Nor could she be woken for her mid-afternoon paracetemol. When I arrived I found I could wake her easily and got her to take the paracetemol, which is in 150ml water. Tea arrived with a much larger than usual main course. Isobel ate this with no problems; nor did she have any problems with the black cherry yogurt dessert. She drank a beaker of juice without difficulty but was very tired immediately afterwards. When awake she had been fairly responsive but did not speak. She seemed comfortable. She fell deeply asleep at about twenty past six. I sat with her for a few minutes and then came home at half six.

I went to Keith and Liz's for dinner. The meal, as usual, was excellent, just a simple concoction of mince, whole onions, mixed veg and boiled potatoes. We watched rugby and some very poor boxing on television. I have been tired since mid afternoon and had a lot of asthma related breathing difficulties which rather spoiled the evening for me. Keith said that Isobel surfaced for just a few minutes when they visited yesterday but was moderately responsive when awake.

News about the Micra being still in pieces at the garage reached me after 5pm, and a visit to Isobel at the usual time was not possible. Iona and I went in at a quarter to eight. Isobel was awake when we arrived and Iona talked to her for a long time.

Keith and Liz had been in to see Isobel during the afternoon, but I have not yet spoken to them.

Isobel had not been sick today and had eaten most of her breakfast, all of her lunch and tea and two pots of balanced supplement. She had also drunk well today and once we had checked that she was not thirsty we did not feel we had to start trying to get her to eat or drink. While Iona talked to her mother I attended to the plants and lighting. Isobel was showing signs of extreme tiredness when we left at twenty past eight but was not quite asleep. Despite being more alert and obviously comfortable, Isobel did not speak during our visit.

Iona and I stopped for a drink and a snack in the pub at the end of the drive, which does meals until 9pm. The snack (Cumberland sausage and mash) materialised as a huge plate piled high with four sausages laid pyramid style against a mountain of mashed potato and a ton of mixed vegetables. Our stay was rather prolonged and although Iona made do with diet Coke I found many pints of Doombar and Bombardier were required to wash down the food.

Today did not turn out as expected and I did not get to see Isobel.

Apart from a day trip to Uxbridge and my visit to Aberystwyth I have not been out of the Bexleyheath area apart from visiting Isobel and Iona for many months. I felt I need a change of scenery and, as Iona was not working today, arranged to take her and her dog Biily to the seaside in the old Mondeo which was scheduled to be withdrawn from service at the end of the month - it has done only a couple of hundred miles less than 150,000 miles. Our destination was the exotic Isle of Sheppey and our trip was uneventful until we were descending the bridge onto the island. The car pulled suddenly to the right and I took it off the road as soon as was safe. It felt like a flat tyre but there was no visible damage and when I resumed driving the car handled normally. We went to an area between Sheerness and Minster and had a walk along the beach. On the way home Iona requested a stop for food at Medway services. About a mile before the services the car began pulling to the left, then more strongly to the right, before recovering and handling normally. Before we left, I said that I would drive very slowly and carefully in case of any re-occurence of the problem. The car moved forward six feet, made a soft clunk, and all transmission of power ceased although the engine, gearbox and clutch operated normally. Pushing the car back into a parking space revealed fragments of shattered steel and six large ball bearings on the ground. The car was recovered back to Bexleyheath by Brittannia Rescue. Luckily the Micra is scheduled for its service and MOT tomorrow and hopefully will be back on the road by Friday.

Jon picked Iona and the dog up, but I decided to settle for a 'phone call to the Centre. Isobel was slightly sick again this morning. She ate a pot of balanced supplement after but could not be woken for lunch. She did however eat both parts of her tea and was said to be bright and comfortable. The nurses will explain to her why I could not get in today.

I went in to see Isobel today at twenty past five, She did not have a good early morning, as she was retching without actually being sick to any extent and was unable to eat her breakfast. She did however eat a pot of balanced supplement a little later and then ate both parts of her lunch.

When I arrived she was awake and nearly finishing the main course of tea. I took over from the carer and fed her dessert of chocolate mousse which she obviously enjoyed (it has been difficult identifying the extent to which Isobel can taste as for many weeks she has approached all foods in the same way). Isobel then drank a beaker of blackcurrant squash. Her swallowing continues to be weak but she seems to come to terms with this by multiple swallowing, with occasional strong single swallows. The eating and drinking this evening was fairly brisk, with no sign of the tiring that usually happens. Isobel was relatively perky today, but her speech still only consisted of occasional single words said not very clearly.

Isobel confirmed she would like some reading and for nearly half an hour I read to her from The Hobbit. She then drank a beaker of orange squash with no problems. I spent a few minutes re-organising the room. I had brought back in the Kalanchoe that she had on the window sill when she first moved in, it has come back into bloom. The amaryllis however has faded completely and I took it home with me - these plants are spectacular but the flowers do not last long in the heat of the Centre. Isobel indicated she would like some more reading, but after just a few minutes she fell asleep.

I am reserving judgement for another couple of days on the effect of the steroid reduction, obviously it may be implicated in this mornings problems but worse occurred last week on the higher steroid dose. Overall Isobel was brighter and more with it today. A couple of letters had come to the Centre for Isobel, both related to speech and language (i.e. swallowing and other feeding problems) and the transfer of responsibilty; they added nothing to what was already known. I left at about half eight.

I went in to see Isobel just after a quarter past five. When I arrived she was asleep. Isobel had eaten almost all of her breakfast and a pot of balanced supplement in the morning. She had also eaten both parts of her lunch; a pot of balanced supplement was noted as having been fully eaten during the afternoon - more about this later.

I had brought in some liquid fertiliser for the amaryllis and applied it. As a result or the warm conditions in the room the huge red flowers are already starting to fade; they would have lasted longer if somewhere cooler and well lit had been available.

One of the carers mentioned that tea would appear in a few minutes. I decided to start Isobel on a beaker of blackcurrant squash and prepared it. Isobel was easy to wake and started drinking the squash (spoonful by spoonful). We had got about halfway through the squash when tea appeared. Isobel ate the first course (some kind of cheesy potato concoction with baked beans - it is not easy to tell exactly what food was originally when it has been liquidised) quickly without any difficulty. She drank a little more of the blackcurrant squash, then tackled yogurt for dessert. The swallowing tired her and by the time she had finished the dessert and the drink she was swallowing slowly and weakly. I gave her the news that her old yellow Micra had been restarted today for the first time in a year and a half, although my pleasure at getting it going was tempered by the knowledge that it was of no use to Isobel. Isobel did not react in any way.

Isobel indicated that she would like her book read to her and I did this for about ten minutes until she fell asleep. I let her sleep until just before seven o'clock - the sun shone down the corridor onto Isobel at exactly four minutes to seven. My intention had been to give her another drink before I left, and I made up a beaker of orange squash. While I was doing this I moved the various tissues and napkins on her bedside table and was surprised to find an opened but uneaten pot of balanced supplement with a spoon in it underneath a napkin. I guess this was the afternoon pot, left for some reason to be taken up again later, but could not check with the day staff who had just gone off shift. I gave Isobel the orange squash which she ate with no problems, a short sleep refreshes her for further eating or drinking. We moved onto the pot of balanced supplement which Isobel started out to eat briskly. However she rather ran out of steam then, and toiled over the last quarter. After she had finished it she fell deeply asleep almost at once.

Isobel's nurse, Rose, confirmed that the reduced steroid dosage had started today, there was no visible effect yet. I left at twenty past seven. At home both the children said they had reservations about the modification of the steroid dose. They felt that there was virtually nothing left of the mother they knew and felt efforts to extend her life were pointless. They reminded me, correctly, of Isobel's stated objections to the prolonging of life for anyone who was unable to benefit from the extension.

I went in to see Isobel at 5pm. She was asleep when I arrived. She had eaten 3/4 of her porridge for breakfast, a pot of balanced supplement during the morning and both parts of her lunch. I woke Isobel easily and before tea arrived she had drunk half of a beaker of blackcurrant squash.

Tea arrived at half past five. She ate the main course moderately quickly without any difficulty. She then finished off the blackcurrant squash. We chatted for a few minutes. Isobel confirmed she was not in pain. Her right arm was still in reasonable condition - it needs watching as she has no control over it and it can become fixed in one position for long periods. I then fed Isobel her cherry yogurt dessert, she had no problems. The swallowing remains weak, often several swallows are needed to clear food from the mouth. There was no spluttering or coughing at all today.

Isobel indicated that she would like some of The Hobbit read to her and I did this for half an hour or so. At about 7pm, if it is sunny, the sun shines directly into Isobel's eyes through the door at the end of the corridor opposite her room; this can be countered by partially closing the door to her room. I don.t think this phenomena will last more than a week or two as it depends on both the horizontal and vertical position of the sun being within very narrow limits. After finishing reading I then gave Isobel a beaker of orange squash to drink. For some reason the squash was thicker than usual, although I thought I had used slightly less than the normal amount of thickener. The squash was still very palatable and easier to load onto a spoon; Isobel finished it quickly without any problem. After this I asked her if she would like some more of her book read, she replied with a very clear and decisive "no". The reason for this became apparent when she fell very soundly asleep in the minute or so it took me to adjust her mobile lights. I left at a quarter to eight. Everything was more relaxed today, she has eaten and drunk well.

I went in to see Isobel just before midday. Last night after I had left she took more food and drink before settling down for the night. She had eaten all of her breakfast this morning and had a pot of balanced supplement during the morning. When I arrived she was asleep but woke easily when lunch arrived a few minutes past twelve.

Isobel ate all her first course with no problem. She drank a beaker of blackcurrant squash without too much difficulty but tired a bit towards the end and we agreed she needed a break before tackling her yogurt dessert.

While Isobel rested she remained awake and I read her a long section of The Hobbit. Then she ate the yogurt fairly easily. Today her main problem has been an inability to hold her head up while eating. Isobel's swallowing is certainly weaker, but today it has not slowed her down very much as long as her head is held in an appropriate position. Generally she has been more relaxed and responsive today. After she had finished the yogurt I read some more from her book, but after a few minutes I offered her a pot of the balanced supplement which she indicated she was ready to try. Isobel ate the pot without difficulty, although she was clearly a little tired from the amount of swallowing she had done in less than two hours.

I cut the nails on Isobel's left hand and will do the rest over the next few days. I read some more from her book but after only two pages she fell asleep. She has enjoyed the reading today and been more alert than usual. I sat with her for a few minutes but decided she was so soundly asleep it would be best to leave her to sleep until tea time, she had already had her mid afternoon supplement. I left soon after a quarter past two.

I went in to see Isobel just before 5pm. She had eaten her breakfast and a pot of balanced supplement during the morning. She had no lunch as she could not be woken. When I arrived her eyes were open but staring vacantly at the wall on the other side of her room. The television was on but she was paying no attention to it. When I sat down beside her in her line of vision and spoke to her I got her attention. She confirmed she would like some of her book read to her before tea. I started reading but had only read two pages when tea arrived.

I will not give a blow by blow account of the next two hours, but for the whole of this time Isobel was either eating, drinking, resting or having brief spluttering episodes. At the end she had finished all her first course and dessert and a larger than usual (300ml) beaker of juice. It was clear that her swallowing was much weaker than any time in the past. It was taking her many swallows to clear a mouthful of food. She was unable to support her head at all in a position for eating. Long recovery intervals were needed after about four or five mouthfuls. It may be that tomorrow she will be back to previous performance, but I think today was a preview of what will be the situation regularly in the near future. The spluttering is caused by small amounts of food and drink entering the windpipe. I am supposed to find her ability to splutter reassuring, as it indicates she can still sense what is going on and probably will not fill her lungs up with food or drink and end up with pneumonia.

After Isobel had finished eating and drinking I washed her face and cleaned up some minor food spillages. During resting periods I had massaged and manipulated both her arms. The right arm seems stable, although Isobel has not been able to use it at all for two months. I have been watching the left arm carefully for a few days. There is now no doubt that muscle wasting is taking place, although Isobel is still able to control its movement to some extent.

Isobel was very tired and seemed close to sleep, but her eyes remained open. She was sensitive to light as she found it uncomfortable when the sun suddenly shone in her face through the door and corridor opposite her room while she was eating. She was still just about awake when I left at twenty past seven.

Today was out thirty third wedding anniversary.

I went in to see Isobel very briefly in the morning, taking the cards with me to show her. Isobel was asleep throughout my visit and I set them out on her table. Isobel had ate only a small part of her breakfast but had eaten a pot of balanced supplement a little later. She had taken some drinks and had not been sick. The Ameryllis with its four bright red blooms each about six inches across is a fine sight. I took the pot of hyacinths home for repotting.

My brother and Liz went in to see Isobel during the afternoon. She was asleep when they arrived but woke up for three or four minutes a little later, then fell asleep again.

I went in to the Centre again just after five o'clock. Isobel had not eaten lunch as she was too soundly asleep. She eaten a pot of balanced supplement during the afternoon. Over the day she had drunk sufficiently so far. I showed her the anniversary cards and explained their significance. When tea arrived I woke Isobel easily, she was probably close to waking of her own accord. She ate all of both courses of her tea without any problem (although I had again to send back the ice cream - a forbidden substance - which was offered as dessert). Isobel drank a beaker of blackcurrant squash, and dozed off a few minutes later.

Iona arrived at about twenty past six having come straight from work. She showed Isobel her scan pictures from Monday again and talked a lot about babies names! She stayed for about an hour. Isobel fell asleep again after she had left.

I let Isobel sleep until just after eight o'clock, then woke her fairly easily. I put the Liverpool vs Benfica football match on television but Isobel was not at all interested, it seems as if her surprising interest in football has now waned. She ate a pot of balanced supplement. This took much longer than usual as the new vanilla flavour is far less thick than the chocolate form. It does not load well onto a teaspoon and tends to drip more. Isobel then drank a beaker of orange squash without any problems, apart from the usual one caused by her head falling to the left. Isobel only spoke a couple of slurred words today. I read a few more pages of The Hobbit to her, then she fell asleep. I left at twenty five to ten. Although not without problems, today was much better for Isobel than yesterday.