Isobel's death. Friday 25th June.

Although it may sound strange, it was pleasant to sit with Isobel through last Thursday night. She was completely relaxed and at peace. She was so weak that in the past few days any kind of disturbance set off a period of erratic or laboured breathing, but once her syringe driver had been adjusted, all the way through Thursday night she breathed steadily although shallowly. She was asleep all the time, although her eyes were often open. Even when she was washed and put in a clean nightdress early in the morning, the disturbance to her breathing was brief.

When I got home on Friday morning I spent an hour painting, then woke Euan. He had largely recovered from the problem with his hands. We planned to return to the Centre at mid-day or soon after. I had breakfast and did some tidying, then had a leisurely bath. While I was in the bath Iona phoned to say that Isobel's breathing had become erratic. Euan and I quickly left for the Centre. At one point Iona thought her mother had stopped breathing and called the nurse to check if she was alive, but as the nurse arrived Isobel took a breath.

Euan and I arrived at the Centre at 12 noon. Isobel was was still just as relaxed but her breathing was somewhat erratic - she would be breathing normally but would sometimes pause for the length of time normally taken for several breaths before breathing again. It was good judgement by Iona to phone us when she did and hurry up our return to the Centre. There was no indication that death was imminent and her condition remained stable for about half an hour. At half past twelve there was a change in the breathing pattern, breathing became more erratic and progressively more variable, some breaths shallow and others deep. At no time was there any struggling for breath. Within a few minutes it was clear that this was the final stage. Nothing dramatic occurred. Isobel's appearance did not change and was still peaceful. The space between breaths increased until it was almost a minute. Isobel drew a breath at 12.45 and did not breath again. After two minutes I felt certain she had died. As I stood up to fetch the nurse to check, a change in skin texture took place, I have not seen this before when someone dies. Iona pointed out that her arms had developed goosebumps. the nurse came and confirmed that here was no pulse or other signs of life. We sat with Isobel until Dr Mohan arrived rather more than half an hour later and examined Isobel and completed the necessary paperwork.

Isobel had a gentle death. For her it was a release, there was nothing left to keep her alive. The damage done to her brain by tumour growth in the final few weeks must have been terrible. Myself, Euan and Iona did not feel any desperate sense of loss at this time. We have had long enough to think through what was happening and to prepare ourselves. We felt it was just a release for Isobel. She has borne so much in the past few years.

I had intended to write an account of Isobel's last day, but will now do this tomorrow.

Today Iona and I cleared out Isobel's room at the Centre. We had not been looking forward to this but it only took about an hour and we felt much better afterwards. A separate trip was made to collect the wheelchair which I will return to the Bexley Wheelchair Trust next week. The only item remaining to be removed from the Centre is Doug's old chair, it must be over a hundred years old but was extremely comfortable.

I will be seeing the undertakers on Monday about the funeral arrangements. In line with Isobel's wishes her body will be cremated. Locally there is a backlog of cremations owing to furnace renewal, so the funeral may be delayed longer than usual.

Friday night

Most of the readers of this blog will already have heard from me by phone, or indirectly through third parties.


Isobel died at 12.45pm today.

She suffered no pain and was relaxed for the last day.

More tomorrow.

Friday morning

Isobel's condition is only a little weaker than 24 hours ago. She was seen again by the doctor yesterday afternoon. Her mix of medications has been adjusted and increased; her syringe driver is now attached to what I call a horse syringe. She remains unresponsive, although I believe she sometimes still hears sounds as very slight reaction to noises sometimes occurs. The increased medication is doing a good job of keeping fits at bay - the increased tendency to fitting is a result of ever increasing brain damage as a result of tumour growth.

Iona was greatly buoyed up during Thursday afternoon by a long chat with Martha, the former Ellenor nurse standing in for Dawn Dark who is on leave. Martha confirmed that there was no hope of survival for more than a day or two. Euan and I went into the Centre just before 7pm last night. The increased medication has also controlled the tremors of left arm and leg, these are now rarer and much less intense. Iona went home at a quarter past eight, taking Euan with her - he has had a worrying problem with his hands swelling up and ran a fever overnight so he has not been getting too close to his mother even when he was in the Centre.

Isobel had a restful night. Some laboured breathing took place during the evening but breathing was relaxed and steady throughout the night. Isobel was washed and had a change of nightdress before 7am. After, her breathing was laboured for about twenty minutes but then settled down again.

Iona arrived at 8am and I went home for some sleep a few minutes later.

Thursday afternoon

There has been no major change in Isobel's condition. She remains completely unresponsive. Breathing is more shallow and at times labourered. Drug doses have been modified and are controlling the tendency to have fits at the moment. There is no indication that she is in pain (the cocktail of drugs being administered constantly by syringe driver includes some morphine).

Iona and Jon were with her through the night; I took over at 7am; Iona returned at 1.30pm. I am about to get a couple of hours sleep before taking over from Iona at 6pm.

Unless anything happens, next blog will not be until tomorrow morning.

Wednesday

I went back to the Centre at 11.30am. While I had been away Iona had gone to her midwife appointment. Euan had observed a number of major fits and emergency medication had been injected. After this Isobel's condition stabilised for the remainder of the day, although minor tremors of the left hand side continue.

We are rotating attendance with Isobel so that there is always one family member with her, usually two. We graciously permitted Euan a trip to Gravesend in order to watch World Cup football. The night shift to about 7am Thursday is being covered by Iona and Jon (they have forced me to go home!). Euan and I came home at 10.20pm.

During Wednesday there has been no major change in Isobel's condition. She remains relaxed. She is asleep for about 70% of the time and apparently unaware of her surroundings for the remainder of the time. Her breathing is shallow but regular. The syringe driver remains in place.

Tuesday pm to Wednesday am

Euan and I went into see Isobel at half four; having spoken twice by telephone to the charge nurse, Edmund, regarding her deteriorating condition. Iona arrived a few minutes later.

Isobel was unresponsive and breathing erratically. She had not been able to take her medication earlier in the day and had just received some emergency injections pending the setting up of a syringe driver. Shortly afterwards a syringe driver was installed to deliver a cocktail of medication including morphine, as it is no longer possible to be certain that she is not in pain, and pain is very common in the final stages of glioblastoma. Her breathing became much more regular and relaxed in less than an hour. Jon arrived later in the evening and took Iona and Euan back to our house in order to collect some bits and pieces for me. Iona and Jon dropped them off to me and I stayed overnight with Isobel. For most of the time she was relaxed and breathing steadily with no sign of discomfort. At 2.30am she brought up some phlegm, and again at 5am; this did not appear to discomfort her.

Iona, Euan and Jon came in at about 8.15am (Jon's shift does not start until 10am today). I went home at 8.30. Isobel remains as comfortable as she can be.

I went in to see Isobel at 2pm. Iona had arrived a minute earlier. Today Isobel had eaten only a quarter of a pot of balanced supplement. She had drunk a moderate amount. Isobel was asleep when we arrived. Isobel was breathing noisily, with her mouth open, very unusual.

Bev, the Ellenor nurse, appeared and did not know about the planned visit from Dawn Dark (who is in effect her senior). Bev commented that the noisy breathing sounded like a chest infection and asked us to point this out to dawn for checking if she had not returned when Dawn arrived.

Pat Ball (Chris' mum) called to see Isobel. We chatted for a while, then Bev reappeared. She said there had been a mix up and Dawn would not see Isobel today - she was on leave this week. However the doctor would be with her in a few minutes and would check Isobel's lungs. The doctor arrived and confirmed that she thought Isobel had an infection in one lung. She would prescribe antibiotics for this. This lung infection is undoubtedly caused by some food or drink finding its way down the wrong tube, I feel that Isobel is very lucky to have escaped this so far, bearing in mind the swallowing difficulties she has had for a while. We discussed various other problems Isobel has. The phenytoin assay results are not yet to hand. We agreed that it would in any case be difficult to match the medication to the varying need as the tumour caused more and more damage. Nothing else discussed was a surprise to us, nothing but further difficulties lie ahead.

After Pat left, Iona and I did not stay long as Isobel was fast asleep. She had half woken a couple of times during the visit and doctor's examination. Several times she produced a short sound, almost a yelp. The doctor attributed this to the breathing difficulty caused by the lung infection. Iona and I left at half past three.

I went in to see Isobel at 5.20pm today. She had only eaten a pot of yogurt since last night. She had drunk a number of small drinks, so the danger of dehydration is relieved. She had taken her phenytoin medication orally today. There had been no more major fits but minor trembling of the left arm and leg continues. The results of her blood tests will be available tomorrow and the phenytoin level will if required be adjusted. All of the phenytoin is being given orally in the morning now - the advantage of having two doses to even up the level in her body over the whole day is outweighed by the difficulty (or impossibility) of getting Isobel to take the evening dose. Dawn Dark from the Ellenor trust will visit Isobel after 2pm tomorrow afternoon, Iona and I will also be there.

Isobel was asleep when I arrived today. I managed to feed Isobel about eight teaspoonfuls of scrambled egg and tomatoes. After this she ate a whole pot of yogurt very slowly. Isobel was sometimes able to swallow on request; at other times she cleared her mouth by repeated weak swallows over a period of time. Isobel had a small amount of blackcurrant squash, but soon became very tired and unable to swallow, retaining the drink in her mouth. Her eyes were a little better, but still not right. Her hands were both clenched into claws, the arms were not significantly swollen. Isobel had no control over either arm (although partial control of the left arm may return). Isobel fell fast asleep, I cleaned her face and mouth, checking that very little drink had been retained in the mouth. I went home at twenty past seven.

Today was another difficult day for Isobel.

I went in to the Centre a few minutes after 5pm. I just missed Dallas who had left just a few minutes before I arrived, en route to a cultural evening in Blackheath. Catherine (the nurse) was having a very difficult time trying to give Isobel a cocktail of paracetamol, water and supplement. I took over and was only able to get her to take about 60ml (out of 200ml) in over an hour. Isobel had only eaten half a pot of balanced supplement earlier in the day. She had taken the phenytoin orally and plans for a syringe driver have been postponed. Isobel was having trouble swallowing and was holding drink in her mouth for prolonged periods of time - after I had given up trying to get her to take the medication and cleaned her up, a mouthful of medication was spat out almost half an hour later. She was very tired and kept falling asleep.

For the first time ever, I sent back Isobel's tea when it arrived as there was absolutely no chance of getting her to eat it. A further attempt to get her to take the medication will be made later in the evening - at least she had taken the more more important phenytoin earlier. Isobel had taken a couple of small drinks.

Dawn Dark from the Ellenor trust is coming in on Monday afternoon and I will see her then.

Isobel's eyes seemed a little better, although still not completely back to normal. Her right arm was not too swollen. She was not able to speak. She could still hear, and would try to swallow in response to my request. Her eyes sometimes focussed on objects or people and followed them.

I went home at a quarter past seven.

I went in to see Isobel at a quarter past four. Isobel had eaten none of her breakfast or lunch but had taken half a pot of balanced supplement in the late morning. She had drunk several small amounts.

I started to give her some thickened blackcurrant squash. This was desperately difficult work, as once again her teeth were clenched shut most of the time. Over the course of an hour she drank half a beaker. Isobel only ate two teaspoonfuls of the main course of her tea. A further hour was spent getting Isobel to drink half a glass of high energy drink.

It has been very difficult to get Isobel to take her medication orally over the past few days. If difficulties recur tomorrow, after discussion with Dawn Dark the Ellenor Trust supervisor, a syringe driver will be used. Dawn will come to see Isobel on Monday.

Isobel is not taking sufficient nutrition at the moment to preserve her body mass, but this is not a critical problem. More worrying is the struggle to get her to take sufficient fluid. She is more or less permanently on a knife edge.

The trembling of the left leg and arm were less today. The nurses are concerned that she is suffering "silent fits". It is clear that further problems are occurring within the brain. These are probably partly due to the destruction of healthy brain tissue by tumour growth and partly to pressure build up as a result of the increase of total tissue volume within the brain as a result of the increase in tumour volume.

Isobel's right arm was again rather swollen today, I manipulated and massaged it. Both the left and right hands were locked into a claw position. It can be uncomfortable for Isobel if the hands are opened, so I did not attempt this.

Isobel's conjunctivitis was rather better today.

After I had washed Isobel's face I left the Centre at a quarter past seven.

Thursday part 2

I went in again to see Isobel at half past five. She had not eaten or drunk anything since my previous visit - Red had just decided he would not be able to get her to eat any of her tea as her teeth were clenched firmly shut. I took over and spent half an hour getting her to take a quarter of the main course. This was only achievable by sliding a spoon with a little food on it between the teeth when they momentarily relaxed and scraping the food off against the upper teeth.

Isobel drank half a beaker of high energy drink in the same way; this took three quarters of an hour then Isobel fell very soundly asleep and could not be roused. I cleaned her up and left at just before 7pm. I took one of the orchids home which had begun to suffer from the low light levels and had dropped most of its flowers.

Thursday, part 1

I spent a large part of the morning on the phone sorting out the position regarding organ and tissue donation from Isobel. Unfortunately because the blood:brain barrier was breached during the debulking operation in January 2008, her organs cannot be used for transplants. After further investigations in appears that most of her tissue is excluded on the same grounds and the last possibility, her corneas, are excluded as a result of the long term use of steroids. Not entirely a wasted effort as it inspired me a few weeks ago to sign up to be recycled and the Blood Transfusion Service now takes a different view on sufferers from hereditary guttate psoriasis so I can begin to donate again for the first time in twenty years.

I went in to see Isobel at a quarter past twelve. Isobel had eaten and drunk nothing today, nor did she drink anything last light after I left. She was asleep when I arrived. Lunch was produced a few minutes after I had arrived. I concentrated on getting Isobel started on a beaker of high energy drink, not easy as her teeth were firmly clenched for the first ten minutes. After I had managed to get her to take a little drink, I tried the food and she ate about a quarter of the main course. While she tried liquidised carrot and greens there was no real problem apart from the teeth not fully opening. However two or three spoonfuls of mashed potato triggered some coughing. I did not try to get her to eat any meat as we have discovered from previous experience that this triggers coughing (even when mixed in with vegetables). Isobel finished the beaker of high energy drink over the course of another half hour. The final mouthful was not swallowed at once but held in the mouth for ten minutes. Isobel then fell asleep and I left just before half past two.

Today was a difficult day for Isobel. She ate half of her breakfast, but had a major fit later in the morning and was sick after. The nurses report that the fit only affected the left arm and left leg. These have had intermittent tremors for some time. These are the direct result of damage to the brain caused by the growing tumour. During and after the fit Isobel's blood pressure was greatly increased; this is consistent with earlier crises such as the mis-diagnosis in October 2008; the events leading to the discovery of the tumour in December 2008 and a temporary loss of the power of speech while visiting her mother in 2009. When Isobel was at home in 2009 she had three whole body fits, each lasting less than ten seconds. It has been rather surprising that further whole body fits have not occurred, but some kind of fits were expected as the damage to healthy brain tissue increased with time.

Rosemary came to visit just as the staff were cleaning Isobel up. When she saw Isobel she seemed very restful and half asleep. Rosemary sat and talked to Isobel for an hour. Because of the fits and sickness Isobel did not eat at lunchtime.

Later in the afternoon Pat Ball (Chris' mum) visited, but I have not yet spoken to her. Isobel was seen by the doctor soon after the fit and a blood test to check the level of phenytoin (the anti-fitting drug) will be done tomorrow. The dosage of phenytoin will be adjusted if this seems appropriate. I believe that Isobel has been very fortunate to escape having more serious fits earlier and that any tinkering with levels of phenytoin dosage will only stave off the inevitable for a short time. Her blood pressure medication is being reviewed. This is prudent as the blood pressure peaks reflect physical events within the brain that may well become more frequent, but this medication cannot prevent the events within the brain taking place.

To add to her other problems, Isobel has conjunctivitis and is having eye drops to counter this.

I went in to see Isobel just after 5pm. She was just about awake when I arrived. I tried to get her to eat tea, but her teeth were clamped firmly shut almost all the time. In three quarters of an hour I could only get her to eat four part teaspoonfuls of the main course and one teaspoonful of yogurt dessert. After this I switched to trying to get her to take a drink, but in half an hour she only took about 50ml - the amount drunk was rather larger but some re-appeared after being held in the mouth for some time. On a few occasions Isobel did swallow in response to spoken requests, evidence that she is still hearing and processing what she hears. She is not however able to control her muscles consistently and when she swallows the action does not fully clear the mouth.

It is difficult to describe but I felt there had been a step change in how Isobel was dealing with food and drink, she was less engaged and her eyes stared blankly for much of the time. We reached a point at which no further drink was being swallowed - anything in the mouth re-appeared after a few minutes. I cleaned Isobel up and she fell asleep. I manipulated and massaged her right arm, the extent of muscle wasting, especially on the upper arm is dramatic. The nurses will try to get further fluid down her later. I left just before 7pm.

Iona is working her last week before going on maternity leave. She is rather uncomfortable as, when they were in Mothercare, Jon dropped an exercise weight on her foot and broke her toe!

My visit to Isobel today was very brief and I did not stay to feed her tea. She had eaten her breakfast and some yogurt after. She had drunk reasonably well. She had not eaten any lunch. The nurses reported that they had extreme difficulty getting her to take her medication; but succeeded after a long effort.

Isobel was half asleep when I arrived. I talked to her but she was not responsive. She seemed to be comfortable.

I arrived at the Centre at twenty past five. Isobel was asleep when I arrived. She had eaten very little all day, just one pot of balanced supplement and a couple of spoonfuls of another. She had drunk reasonably well so far.

When tea arrived at about half five, Isobel was fairly easy to wake. She ate all of the main course very very slowly. Towards the end she showed signs of tiredness. She had just one mouthful of orange squash. She also ate a pot of strawberry yogurt. While eating the yogurt there were three or four episodes of coughing and spluttering. She fell deeply asleep as soon as she had finished the yogurt. Her arms were not very swollen and she appeared to be comfortable. She was not able to speak. I sat with her for a while before leaving at 8pm.

I went in to see Isobel at 5pm. She had eaten half her breakfast and had two pots of balanced supplement after. She had not eaten lunch. She had drunk fairly well overnight and in the morning.

Isobel was asleep when I arrived. I woke her at once without any problem and began giving her a high energy drink. About a quarter of an hour later tea arrived. Over the course of an hour Isobel ate most of the main course and all the high energy drink. The main course was scrambled egg and liquidised beans - Isobel finished all the egg which she enjoys, even though the crumbs cause some coughing and it gets cold while she was eating it. Some of the beans were left as they was too runny.

Isobel was again very sleepy. She was not able to speak. Her right arm was slightly swollen and I massaged and manipulated it, but it was not nearly as bad as a couple of days ago. Isobel ate a pot of balanced supplement with no problems but then fell soundly asleep. Isobel was comfortable, and this was a good day for her overall. I left at 8pm.

I went in to see Isobel at mid-day. She had eaten a pot of balanced supplement as well as having more to drink in the early hours of the morning. She ate most of her breakfast and another pot of balanced supplement this morning. Isobel was showered this morning without problems. She was asleep when I arrived but woke easily.

Lunch arrived rather late, just after half twelve. Isobel managed to eat all of her first course although it was a rather slow business. She very nearly finished a beaker of high energy juice but fell irrevocably asleep with just two teaspoonfuls left. Isobel was relaxed and comfortable, although there was some coughing and spluttering while eating. Her right arm was much better, not nearly as swollen and no sign of pressure points.

We are now at a stage where Isobel is constantly on the edge of not eating or drinking enough. The eating is not a serious problem, Isobel could miss food entirely for several days without causing any real difficulties. The drinking is usually easier to manage but potentially more serious if she does not drink at all for a couple of days. She is much sleepier, in the sense that she sleeps more deeply. The proportion of the day apparently asleep has probably decreased over the past couple of months, but for much of the time her eyes are open she is unresponsive and not really awake. The sleepyness makes eating and drinking very slow. I left the Centre just before half past two.

Friday

A late posting of Fridays blog, I will be at the Centre again in half an hour.

I went in to see Isobel at 5pm. She was asleep when I arrived and had been very sleepy all day. She had not eaten anything all day apart from a few teaspoonfuls from a pot of balanced supplement. She had drunk a moderate amount.

When tea arrived I woke Isobel and Keith and Liz arrived. Isobel ate slowly, with long pauses between mouthfuls. After a while Keith and Liz left and I continued feeding Isobel until she had eaten three quarters of the main course. She remained half awake and over the course of another hour and a half she drank half a beaker of blackcurrant squash. She was desperately tired and finally fell deeply asleep. A further attempt to feed her was planned for 11pm. I left at 8pm.

I got carried away while painting today and when I checked whether it was half four, found out it had just turned five o'clock, as a result I did not get in to see Isobel until half past five. Isobel was asleep when I arrived. She had eaten her breakfast and a pot of balanced supplement at the same time. She slept through lunch and only had a couple of spoonfuls from a pot of balanced supplement when she woke. She had not drunk much during the day.

Tea arrived a few minutes after I did. Isobel was rather difficult to wake and was very sleepy. She eventually ate all the main course. She was very slow but did not have any particular problems. She was unable to keep awake when trying to drink a glass of high energy drink. When she had drunk about a third of it very slowly I decided she might do better after a rest and let her sleep for an hour and a quarter. Isobel was difficult to awake and again very slow to drink, but she eventually finished all the drink - if she had drunk more earlier in the day I would not have persisted with this drink.

Isobel was unable to speak today. She seemed generally weak and tired, but at the same time relaxed. For some time she has had minor tremors of the left arm and leg, these were more noticeable today. Her right arm, which has been no problem for some weeks was swollen like a balloon again today. There was a small red mark on the skin at the elbow, although she has a pillow underneath the arm - possibly she has rested the arm with the elbow in contact with the wall. The nurse agreed that there was no explanation for the erratic swelling behavior of the arm. I manipulated and massaged the arm for about a quarter of an hour. Isobel went to sleep again and I went home just after 9pm.

Wednesday's blog

I went in to see Isobel at 5pm. She was asleep when I arrived. On Tuesday she had eaten very little after lunchtime, probably because she was tired from the effort she made at lunchtime. She had taken just sufficient drink during the day. It is probably not worth trying too hard to wake her for food at lunchtime if it is going to adversely affect her later. Her natural pattern seems to be to sleep for most of the day and pots of balanced supplement and drinks are available for whenever she wakes. The best times for getting her to eat conventional food are when she is dressed in the morning and at teatime.

Today Isobel had eaten half of her breakfast and a pot of balanced supplement later in the morning. She had slept through lunch. When tea arrived she woke easily. She ate the main course easily and moderately quickly. She tired somewhat as she ate strawberry mousse for dessert but finished it. She drank half a beaker of blackcurrant squash very slowly before falling asleep. She was able to confirm she was comfortable but did not speak apart from this. She seemed relaxed. I sat with her for a while but she showed no sign of waking again; I left at twenty past eight.

Iona went to her first ante-natal class this evening!

As I was in in Orpington this morning, I went in to see Isobel on the way back arriving at mid-day. Isobel was only able to eat a quarter of her porridge for breakfast, but had a pot of balanced supplement later in the morning. Isobel was very soundly asleep when I arrived.

When lunch appeared it was very difficult to wake Isobel. It was almost impossible to get her to take any food at all as her teeth were clenched tightly shut for much of the time. Eventually she managed to eat half of the main course, only on about five occasions did she take a proper mouthful, the remainder was slid between almost closed teeth. A very long time was spent after trying to get her to take drink, she managed a quarter of a beaker over the course of an hour. After this Isobel fell very soundly asleep again and could not be roused.

This lunchtime was typical of many now. This depth of sleep results in her missing many lunches as the staff cannot spend two hours with her (and are probably not prepared to be as forceful as I am). Isobel was again unable to speak today and was very unresponsive generally. She will probably eat better this evening. I left at just after 2pm.

Pat Ball arrived to see Isobel a few minutes after I left. She did not stay long as Isobel was fast asleep.

I went in to see Isobel at five o'clock. Isobel had eaten half her bowl of porridge for breakfast and a pot of balanced supplement after. She could not be woken at lunchtime and had not drunk a lot during the day.

I fed her the main course at tea time. She finished this, but needed a lot of drink to help clear her mouth and coughed a lot, covering me and my clothes in fine fragments of food. Despite these problems the eating was fairly rapid. The main course, a beaker of high energy drink and a pot of yogurt were finished by soon after 7pm; as usual the last part had been slow as Isobel tired. Isobel was not able to speak today but listened with apparent interest as I described current events. I read a long section of her book to her before she fell asleep just before 8pm. I cleaned Isobel up and left just after 8pm.

I went in to see Isobel just before half five. She did not have a good final part of the day yesterday and had virtually nothing to eat or drink after I left at lunchtime, although numerous attempts were made to give her food and drink in the evening. She drank this morning but did not eat any of her breakfast. However she ate two pots of balanced supplement during the morning. She had only six spoonfuls of her lunch. Some of her drinks have been the very high energy drinks that compensate to some extent for her failure to eat much; she had drunk half a beaker of this shortly before I arrived.

She had already eaten half of her tea time yogurt before I arrived, having started on this as it was thought she would find it more acceptable than the main course. She quickly finished the second half. I begun to feed her the main course. At first she ate fairly quickly but soon showed signs of tiredness and slowed down considerably. She took a couple of spoonfuls of drink with the meal, but needed a rest before starting on the second half of the high energy drink. Isobel was very slow and tired and eventually finished the drink shortly before half seven. She fell asleep immediately and slept for an hour, waking of her own accord. I then gave her a second beaker of high energy drink: she drank this in two stages with a twenty minute doze in between. Isobel will be given another drink with her medication in an hour or so.

Taking the two days together, Isobel will just about have drunk enough to get by, but it is not a comfortable position. She was able to say a couple of words today and confirmed that she does not have pain. She was seeing some things clearly, but at other times her eyes wandered independently, very disconcerting. I went on to Iona's at a quarter to ten, Isobel had fallen asleep again.

I went in to see Isobel at mid-day. When I arrived she was being dressed and settled in bed after a shower. She had eaten a bowl of porridge for breakfast. A shower usually exhausts her and is likely to trigger vomiting, but on this occasion although Isobel was fairly tired she seemed relaxed and there was no sign of a tendency to vomit.

I sat and talked to Isobel until lunch arrived at half past twelve. Isobel was not able to speak. Isobel ate three quarters of her meat and three veg before running out of energy. She also drank half a beaker of high energy drink. She showed no response to music on the radio. Although she was tired, Isobel was not fully asleep but was unable to eat or drink any more. I left for my brothers house at about a quarter to two.

I spoke to Jane by 'phone, she said Isobel had apparently been awake when she visited yesterday - she and Derek went in early and Isobel was still being dressed when they arrived. She talked to Isobel, but Isobel was unresponsive. I have no doubt Jane used the right approach; Isobel can seem to be completely unaware of what is going on but she will in fact be hearing what is said,

I went in to see Isobel at a quarter past five. She had not eaten breakfast and had just a couple of spoonfuls of balanced supplement after. She ate a whole pot of balanced supplement later in the morning but did not touch her lunch as she could not be woken.

When I arrived she was asleep but woke easily when tea arrived at half past five. By six o'clock she had eaten all of the main course although it had been very hard work for both of us. It then took over an hour for her to drink three quarters of a beaker of high energy drink before falling asleep. I slipped out to do some shopping....

When I returned Isobel was still asleep. I woke her without difficulty and she drank the last quarter of the high energy drink in about twenty minutes. We then moved onto the yogurt remaining from tea. There is no doubt that Isobel still enjoys yogurt, she always eats it with more enthusiasm than other food. She finished a pot of yogurt in twenty five minutes with obvious pleasure. Isobel tried several times today to speak but I could not make out what she was trying to say - she is I think trying to say complete sentences but is nowhere near forming a word that can be understood. Isobel was able to indicate that she was not in pain. Her eyes were again very odd today. I left at a quarter past ten.

I went in to see Isobel at just after 5pm. The Clements had visited in the morning and Pat Ball in the afternoon, but I have not yet spoken to them. Isobel had eaten nothing and drunk very little today by the time I arrived.

Isobel woke fairly easily when her tea arrived, just a couple of minutes after I arrived. She was unable to speak and at times her eyes did not appear to function. There was a full beaker of high energy drink from earlier left undrunk on her table. I gave some of this drink to Isobel before starting on the main course of scrambled egg and tomatoes. Feeding Isobel today was very slow and difficult, with her teeth clenched tightly shut most of the time. The technique is to wait for a slight relaxation of the jaw muscles and then slip the spoon between the teeth, scraping off the food or drink on the inside of the upper teeth. At first there was considerable coughing and spluttering, but this diminished when the pace of eating slowed even more. After about three quarters of an hour Isobel had eaten half the meal and drunk almost half the drink. We switched to concentrate on the high energy drink which Isobel finished very slowly. She then had a little from another beaker of high energy drink. She then ate a pot of balanced supplement with major problems. Returning to the second beaker of high energy drink Isobel managed to drink a little more before falling sound asleep.

Isobel slept for almost an hour before I woke her and asked her to try and drink some more. Over the course of almost an hour Isobel took only two teaspoons of drink, her teeth being clenched shut almost all of the time. Catherine, the nurse who has a good track record of getting Isobel to drink in the middle of the night, came on shift and said that she had completely failed to get Isobel to drink anything last night. I had planned to get Isobel to finish the high energy drink and eat a yogurt, but she only half drunk the high energy drink and did not start the yogurt. When she fell deeply asleep again I gave up and went home just after 9pm. Isobel has not really drunk enough to get by in the past twenty four hours.

I went in to see Isobel at 5pm. She had a poor start to the day. She did not eat breakfast but was sick after a drink. Later she had part of pot of balanced supplement. At lunch she had only a few spoonfuls of a pot of balanced supplement. She drunk a moderate amount during the day.

Isobel was asleep when I arrived but woke easily. She was again unable to speak. Eating tea was not without problems, there was a moderate amount of coughing, sending a spray of fine particles of food mainly over me. However, not much food was lost and the main course and a glass of high energy drink were consumed much more quickly than in the previous few days. A bowl of yogurt was tackled after a few minutes rest and all eaten within ten minutes. Although Isobel was tired after eating and drinking, this was a much more satisfying performance than for some days.

I read several pages of The Hobbit to Isobel, but stopped when she showed signs of falling asleep. I starting trying to cut her fingernails but switched to filing them down and found this gave satisfactory results with less effort. I was able to do all the fingers on both hands as the claw like gripping had relaxed. Isobel's right arm was swollen for the first time in several weeks and I massaged and manipulated it. Isobel fell soundly asleep afterwards. I came home earlier than usual at twenty to eight.

I had a long chat by telephone with Victoria, the speech and language therapist this afternoon. I gave a description of Isobel's problems, the weakening of swallowing and need for multiple swallows to clear her mouth, resulting in eating being much slower than a few weeks ago. We agreed that the decline in Isobel's eating was what we expected and no input from Victoria at this stage was likely to improve matters. Victoria was of the opinion that all the strategies now being used were the best that could be found. She will check again in a couple of weeks.

I went in to see Isobel at the usual time but was held up by traffic on the A2 slip road and did not get in until almost half past five. June had already been with Isobel for over half an hour, Isobel had been asleep, but occasionally coughing. June had to leave almost at once, a couple of minutes after Isobel's tea arrived. Isobel did not have a good start to the day. She ate only a quarter of her breakfast and could not manage a pot of balanced supplement. She also could not be woken for dinner. Later in the afternoon she ate a pot of balanced supplement. She drank only moderately during the day.

I managed to get Isobel to eat all her main course and drink half a beaker of blackcurrant squash; but it was a desperate struggle. This took two hours altogether and was punctuated by dozens of coughing incidents in which no significant amounts of food were expelled but a fine spray of food and drink constantly hit me. I found out that the coughs were often occurring just after swallows, which I had not noticed before. Isobel had drunk a little of the drink while eating the main course but was incredibly slow while finishing the remainder of the half beaker after finishing eating. The yogurt dessert had been foregone, the intention being to give Isobel a pot of balanced supplement after she had taken a full beaker of drink, but she was completely exhausted and fell asleep after half a beaker. I decided to let her sleep and recover before giving her the second half beaker of squash.

While Isobel was sleeping, Dallas and Mike arrived en route from Ramsgate. We chatted for an hour while Isobel slept, they left just before half nine. As soon as they had gone I woke Isobel, with some difficulty as she was still very tired. However she drank the second half of the beaker of squash more quickly, but as soon as she finished she fell fast asleep again. I abandoned hope of giving her anything more - Edmund will try to give her a pot of balanced supplement later tonight. I went home just after a quarter to ten.