Blog entries may become shorter now as they will concentrate on Isobel, not what the rest of us do. Just as well today, as a reaction set in to the efforts of the past few months and we all wasted a lot of time doing things really slowly and feeling tired.

Iona and I went in to see Isobel in the early afternoon. She had eaten breakfast and lunch. We gave her some tea and squash and sat around chatting. Her room now has some personal effects to make it look more welcoming and we will add more over the next few days. We also took in the wheelchair, she will spend part of the time sitting in it. Isobel has been fairly calm according to the staff. She talked to us very sensibly most of the time and seemed happy with her new surroundings. She has not tried to leave the bed although the staff found her sitting on the edge of the bed this morning. After less than three hours isobel said that she felt tired, and asked us to go. I think this was a good sign that she feels comfortable there.

Overall the transition to the unit seems to have gone smoothly, despite the rest of us making heavy weather of setting up her room!

Iona and I went to the Queen Elizabeth Hospital soon after mid-day. Isobel had, as she had promised, eaten breakfast. The mention of a CT scan yesterday had been a mistake, she did not have one. By chance I bumped into Chioma, the Macmillan nurse who had finally got Bexley Care Trust to agree to the transfer and was able to express the family's gratitude. I fed Isobel dinner - shepherd's pie, mash and beans. Iona and I sat with Isobel for a while then had a rather nice dinner in the canteen. After the meal Iona went home to await a 'phone call to pick me up from the Peter Gidney Unit.

I sat with Isobel until well after 4pm waiting for the ambulance. At times Isobel was upset by the wait and shouted and swore; but at other times she dozed. The ambulance crew arrived, They were based at Whipps Cross Hospital in north London and had come in on a rest day to do one trip, then been told they were on shift until 7pm. We planned a route to Darenth using their SatNav and set off to join the A2 at Well Hall. We found the roads clogged and the A2 slip road sealed by police who advised that a jumper was on the Danson overbridge and the A2 was closed. We invented an alternative route by the A20 and made it to Darenth without significant holdups; the A20 became gridlocked behind us I later found out. I suggested the crew got home via the M25 and A12 as everywhere south of the river seemed to be seizing up - probably good advice although I think the hold up on the Dartford crossing approach would have been more than the fifteen or twenty minutes I estimated.

The Peter Gidney Unit is a single story building in a rural setting. We soon had Isobel settled in her room and the formalities of arrival were completed. Iona and Jon arrived. Isobel had missed dinner so she had a couple of ham sandwiches and arctic roll for afters, washed down by two mugs of tea. She was cleaned up and settled down to watch television. We left soon after half six. It took almost an hour to get home, even though Jon chose probably the quickest route, the whole of the area seemed to be one giant traffic jam. I will complete the personalisation of her room tomorrow.

The morning was largely spent on telephone calls again. I was satisfied the the Macmillan nurses were doing eveything they could to arrange a transfer for Isobel.

I picked up Iona from her house as she had left her car at our house, we shopped in Greenhithe before going back to Bexleyheath. Jacquie, Isobel's old friend from work decades ago, went in to see her at 2pm. I went over a bit later but had to park miles away as my usual parking spot near Cemetery Lane was full; I did not get in until a quarter to three. Isobel had refused breakfast and lunch so the nurses asked me to try and feed her a sandwich. I had already fed her some chocolate and she was happy to eat the sandwich and drink a mug of tea. Jacquie had already got her to drink some orange squash.

From the ward I spoke by telephone with the hospital's Macmillan nurse who advised that she had just arranged a transfer for the next day, not to the hospice but to the Peter Gidney Unit. Immediately afterwards Maggie Williams from Bexley Care Trust telephoned the ward and asked to speak to me, she seemed rather put out that Isobel had been admitted to the Queen Elizabeth Hospital and asked if she had been transferred direct from Maidstone Hospital - I don't know where she got this idea. I explained the circumstances including the professional view of Rosemary at the Ellenor Trust regarding Isobel's safety and the judgment of the ambulance crew when they arrived on the scene, bearing in mind that a bed at the Bexley & Greenwich Hospice had been expected to be available on Wednesday and it was close to the Queen Elizabeth Hospital. Maggie Williams stressed that Bexley would not make any transport arrangements and I should remind the hospital that this was their job (!).

It was agreed that I would come to the hospital soon after mid-day tomorrow with clothes for Isobel and accompany her on the journey. The hospital did not see any problem with arranging transport. Jacquie and I stayed with Isobel until almost 5pm.

I arrived back at the hospital just before half past seven. Isobel's bedclothes had been changed again, she had eaten dinner (although she could not remember what she had eaten) and was in a relaxed state. I fed her chocolate and gave her a mug of tea. She will have a CT scan tomorrow morning, this is unexpected but it will be interesting to compare the results with the MRI scan. Isobel went to sleep at about 9.40pm, I stayed until almost 10pm. She is pleased to be leaving the hospital tomorrow and has promised to eat breakfast!

After a brief sleep I woke at 9am to begin a morning of 'phone calls. I won't go into these in detail, but it became apparent that a hospice bed was not available for Isobel today. Later in the day it was learned (from the nurse caring for Isobel at the QE Hospital) that there had been a hospice bed available briefly but it had been taken by an even more urgent case. The only people I could not reach in my sequence of 'phone calls was the District Nurses whose contact number was permanently engaged.

In the middle of the morning a District Nurse arrived to see Isobel. Although Euan had told other District Nurses last night that his mother was in hospital, the news had not filtered through at ground level.

Iona came over in the late morning. The pharmacist at QE Hospital phoned with a query regarding Isobel's medication and she confirmed that Isobel was in a stable condition and had been examined again by a doctor.

Jon's work team had completed their quota early and were released an hour or so before their usual finish time. Jon picked up Iona and went onto the hospital. They were under strict instructions not to stay for too long and to go out to the cinema in the evening in order to relax Iona. Iona 'phoned from the hospital, rather agitated because her mother was lying on the floor of her single bed room after "escaping" from the hospital bed. It was learned that at one stage she had crawled out of the room on hands and knees covered in excrement. After some discussion it was apparent that her usual antipathy to hospital beds had manifested itself again and the hospital was probably dealing with it in the best way. Jon rather gallantly investigated the most soiled garments and placed them in a position where the smell was taken out of the room.

After grabbing an hours sleep and doing some shopping I went into the hospital in the evening. Isobel was still on a mattress on the floor. I fed her the final part of her evening meal, a large helping of some sort of fruit purée. Isobel confirmed she would not sleep in the hospital bed, so she was better off on the floor. Isobel was very relaxed and calm. Isobel and the room had been cleaned up. She was able to converse fairly sensibly in short sentences. The nurse tasked with looking after Isobel during the night said that the hospital had not been able to locate their low bed (a type of bed discussed with the representative of the Peter Gidney Centre, the mattress can be lowered to floor level in order to minimise the risk of falling) but had placed the mattress on the floor as the next best thing - this is without doubt true. The nurse was concerned about Isobel's fluid intake and over the course of half an hour I got her to drink a beaker of orange squash, a small container of apple juice that had come with dinner and a mug of tea. The nurse supplied the contact number of the Macmillan nurse who was trying to sort out the transfer, I will 'phone her in the morning and make sure that she is aware of Isobel's full history and contact details for other parties interested. Isobel confirmed she wanted nothing more to eat or drink and went to sleep at about half past nine. I only stayed about ten minutes after she had gone to sleep.

This entry is written just after 6.30am Wednesday, immediately after returning from Queen Elizabeth Hospital. Woolwich, where Isobel is now an inpatient.

Monday's blog should have mentioned that the nursing assistance promised from 2pm until the evening failed to materialise.

On Tuesday morning Isobel woke shortly before 8am. A nurse arrived at 8am to assist until 12 noon. Preparations for the trip to Maidstone Hospital for an MRI scan went smoothly until Isobel had to move from her bed to the car at 11.45. She was exhausted by walking (with a lot of support) from the bed to the head of the stairs. The stairs were descended without too much of a problem although as usual Iona had to manually move her mother's feet for her. At the bottom of the stairs it was clear that Isobel could not walk the few yards to the car so the wheelchair was positioned outside the front door. The couple of yards from the bottom of the stairs to the wheelchair was almost a disaster as Isobel lost all ability to stand once through the front door and I had to bodily lift her the last step into the wheelchair. The transfer to the car and trip to Maidstone went smoothly. Iona came with us but Euan said he was too ill to come.

At Maidstone Hospital there were no problems until we were in the MRI suite. A hoist was needed to get her onto the scanner and there was some delay in doing this. The scan went smoothly. when the scan was completed we had drinks and buns before setting out for home.

We arrived home at about half past three. Isobel was placed in the wheelchair and taken to the front door. It was clear that she was not able to help support her weight in any way. All we could do was to place her on a kitchen chair in the hall. There was utterly no prospect of us getting her up the stirs on our own. The suggestion that she temporarily use the hospital bed in the living room caused an extreme outburst of shouting and swearing. It was clear that even if we carried her to the hospital bed, she would not remain in it. Iona phoned the Ellenor Trust and asked their advice. During the 'phone conversation Rosemary at the Ellenor could hear Isobel shouting in the background even though she was at the other end of the house from the 'phone. Rosemary advised that it would not be safe to attempt to keep Isobel in the house overnight and we should call an ambulance to take her to A & E as an emergency overnight admission. A hospice bed would be available tomorrow.

Isobel was taken by ambulance to Queen Elizabeth Hospital and after a number of hours of tests was admitted to ward 18 as an inpatient. Attempts were made late in the evening to clarify transfer arrangements for the next day but these could be finalised owing to the lateness of the hour. I stayed with Isobel until 6am. I will make various 'phone calls after 9am and return to the Queen Elizabeth Hospital after 10am.

Postscript:
As this entry was completed there ws a ring on the front door bell. This was a nurse arriving to start a shift at 7am! This had been arranged by Bexley Care Trust even thought the last word we had from them was that nothing would be arranged for Wednesday as the transfer to residential care might take place that day. I spoke by 'phone to the nursing agency who said that they had been asked to provide home nurses for Wednesday, Thursday and Friday. It is apparent that Bexley Care Trust envisaged Isobel staying at home all week, and presumably over the weekend as well.

Isobel slept until just after 8am. We had a nurse to help until 2pm and the district nurse came in during the morning although she did not need to do anything. She needed some coaxing onto the commode after waking and the bed was slightly wet.

I spoke to Maggie Williams at Bexley Care Trust during the morning and was disappointed to find that yet again no decision about respite care had been made. She claims that her part of the bureaucracy has only been aware of Isobel's existence for just over a week and her organisation is not responsible for any earlier delay which must be caused somewhere else in the system. She was unable to say what was happening in respect of the possible hospice move. She was unable to say what was happening in respect of the place at the Peter Gidney unit. She thought residential care would be arranged within "one or two days" but refused to give a categoric assurance this would be done. She was keen to put in place continuing arrangements for home nursing; I pointed out this would not be needed if Isobel was in residential care as agreed. As a compromise she would arrange nursing cover for today from 2pm when the current nurse finished, Tomorrow when Isobel goes to Maidstone for an MRI scan there would be nursing support from 8am to 12 noon. Overnight cover would be suspended unless problems arose. No arrangements were made for Wednesday in view of the pending residential transfer.

Iona arrived after her trial morning at the nursery. She said it went well and they had decided she did not need to do another half day on Wednesday. She cannot start work until her references have been checked and her enhanced CRB check done, probably the first week of November. Iona only stayed for a couple of hours today.

Isobel had chicken Kiev, chips and beans for tea followed by chocolate pudding. At 9pm the bed was wet again but Isobel was settled down to sleep by 9.30 although she did not actually go to sleep until 10.30pm.

Isobel slept through until 9am. Taking into account the change from BST to GMT this was twelve and a half hours of unbroken sleep. When the morning nurse arrived at 7am we decided to let Isobel sleep on, despite the risk of a wet bed, as she had been so tired yesterday. When she finally awoke the bed was wet but was quickly changed. Later on after breakfast I was distracted by the arrival of the district nurse and forgot to give Isobel her tablets until almost mid-day, this resulted in some ill tempered shouting and lack of cooperation at times, despite this the morning was not too stressful. Iona came over early as Jon was playing in Dulwich.

We had a late lunch and Jon picked Iona up on his way home. The afternoon passed quietly. For dinner Isobel had meat balls in spicy tomato sauce (cooked by Euan) but did not want any afters. For once preparations for the night went smoothly ahead of schedule and Isobel was settled down for the night, but still awake, before the changeover to the overnight nurse at 10pm. Isobel went to sleep shortly afterwards at about 10.20pm.

It is worth comment that Isobel has not attempted to leave the bed on her own at any time during the weekend. This is probably the single most important factor making this the most relaxed couple of days for several weeks. There were however signs today that suggest Isobel is beginning to be faecally incontinent as well as urine incontinent.

Isobel had a quiet night and slept through the changeover from the night nurse to the 7am to 2pm shift (but then so did I, surfacing at 7.15am). Apart from a commode visit that, including clearing up and changing the bed, took an hour and a half, the day was relaxed. (Euan has just asked that I add that there was a lot of shouting from Isobel that woke him up - some of this was worryingly similar to the problems that we had a few weeks ago. It took place about an hour after she had taken her sedative, this is consistent with the sedative taking about three hours to take effect, so the most risky time is an hour or so after a tablet has been taken.)The district nurse called while this was going on. Iona and Jon came over together as his football had been cancelled.

Dallas appeared in the afternoon for a flying visit, bringing more biscuits and helping to eat the shortbread Jane brought, but failing to help eat the surfeit of chocolate cake!

Isobel had Spanish omelette, mashed potato and peas for dinner, followed by blackcurrant cheescake. Two district nurses called briefly. She went to sleep at about half nine. Overall this was a relaxed day despite the outburst in the morning.

A difficult start to the day as Isobel refused to use the commode for several hours in the morning. Iona came over and took responsibilty for washing Isobel once it became clear we would not be able to bath her. Euan was still ill and unable to lift. At mid-day the bed became slightly wet and was changed.

The was considerable activity over the telephone. Isobel may be in the hospice for a couple of days at the start of next week before transfer to the Peter Gidney unit. Iona negotiated twenty four hour cover over the week-end before she went home.

Isobel had baked chicken, chips, peas, carrots and sprouts for dinner, followed by chocolate pudding. The district nurse called at 7pm to check her. The night nurse arrived at 10pm; I spent the next two hours dealing with a leaking toilet upstairs; I only managed to redirect the leak so that it fell it one spot for collection instead of drenching the floor from half a dozen points, I guess the cistern has to come off the wall tomorrow.

Isobel slept until just after half nine. Jane came round at 11am and stayed for an hour, sitting on the bed and talking to Isobel who was alert and on the whole spoke in understandable sentences.

After Jane had gone, Iona arrived from her job interview. She feels it went well and will do two trial half days at the nursery next week. Euan woke up still feeling very rough, although his high temperature has gone. He was again excused lifting duties today.

Isobel's speech became much more confused in the afternoon and there were several periods when she wanted to be lifted on and off the commode almost continuously. Nothing was heard from Bexley Care Trust. Maidstone Hospital confirmed the next appointment with Dr Sadler, the oncology consultant, would be on Friday 13th November, to discuss the results of the scan on the 27th of this month.

Isobel had minced beef stew for dinner, followed by chocolate pudding and some more of the shortbread brought by Jane this morning. She was asleep by 11pm.

Isobel had a fairly undisturbed night until about 8am. While I was helping her off the commode she managed to sit on the floor. For some reason I was as weak as a baby this morning and could not lift her back onto her feet. I did not want to disturb Euan as he was unwell during the night as well as having strained one of his shoulders badly. After about forty minutes I managed to lever Isobel onto the end of the bed from a kneeling position and slide her up the bed. Luckily this was the only time we had to lift Isobel from the floor today.

After breakfast Iona came over. With one exception I will not describe in detail the large number of 'phone conversations with various bodies and individuals during the day except to say that despite various misunderstandings I feel progress is now being made and expect further developments tomorrow. The most amusing call was from Bexley's Care Central to forewarn me that a call would take place from a representative of the Peter Gidney Unit at Darenth - this was the visit from Margaret Nicholas which had already taken place yesterday!

In the late afternoon we helped Iona complete a form for a job interview tomorrow, then she went home. For dinner Isobel had cheese and bacon flan, chips and baked beans, followed much later by some garlic bread. She watched the second half of the Chelsea vs Sporting Lisbon match and did no more than doze briefly before the bed was found to be wet at midnight. Isobel finally settled down to sleep at half past midnight.

In terms of moving Isobel around, today has involved much less work than usual. Just as well as we might not have coped, Euan is too ill to do much and I have felt exhausted all day. We are sailing far too close to the wind for comfort.

After 1am the night was uninterrupted but this ended with a wet bed at 5am. Isobel slept on after the bed was changed until about 9am. After breakfast there was another wet bed at just after 10am. Iona arrived soon after. Euan was ill with some bug or virus which gave him pain in all his joints and a bad stomach, we have tried to shield him from physical effort today.

The visitor expected from Prory Mews at 11am failed to materialise, but Margaret Nicholas appeared after midday. She runs a specialist neurological unit at Darenth Hill near Dartford. It was apparent that she was fully conversant with the needs of glioblastoma patients, unlike the person from New Eltham last week. She conducted a thorough pre-screening of Isobel and was satisfied that her unit could provide good quality accommodation, initially for two weeks respite but potentially for long term care. She mentioned that she anticipated an argument with Bexley over funding as her units fees were higher than many others because of the specialism. The unit may not have a spare low bed (to deal with Isobel's habit of falling when leaving the bed) and this might take a couple of days to organise once transfer has been agreed.

After a very late lunch, Euan and Iona went shopping, Iona went straight home after. The was another wet bed shortly after 4pm. After changing this I went to Boots to buy some more waterproof mats to go under the mattress protectors on the bed, but they were out of stock so I did some frozen food shopping in Iceland. On the way back I bumped into Mr Remington, he looked after his sick wife for four years so we swapped stories in an attempt to cheer ourselves up. I was at school with the elder of his sons and Keith was at school with the younger. While I was chatting to mr Remington Chris Ball came down the road. He had called at the house to see Isobel but had noticed me chatting a hundred yards down the road. Isobel was asleep when we got home and Chris sat on the bed chatting to me until Isobel woke. Isobel was very pleased to see Chris and they chatted for a long time until Isobel became a little tired and need her dinner.

It was now too late to cook the planned dinner so instead everything came out of the microwave - chicken in tomato and basil sauce with potato wedges, green beans, broccoli and sweet corn. Isobel went to sleep soon after 9pm. Euan was still feeling very poorly during the evening.

Isobel slept until 8am when the bed was wet again. After the bed had been changed she slept for another hour or so before breakfast. Afterwards there was another period when Isobel was constantly on and off of the commode.

We were 'phoned by some one from Bexley's "Care Cental" who said that a place at Priory Mews was being considered. A representative of the home will call to see Isobel at about 11am tomorrow. This home has a good reputation and is situated on the other side of Dartford, very close to the end of the road Iona lives on. It is probably a better solution than the home in New Eltham that refused to take her.

We were 'phoned by Dr Elphick who invited herself round to see Isobel at 2.30pm. Dr Elphick is Isobel's GP but has seen her only once since her operation in January 2008. I phoned Sarah Parker at the Ellenor and left a message advising her of developments. I phoned Dr Sadler's secretary at Maidstone Hospital and confirmed the date of the MRI scan appointment so that a consultation with Dr Sadler could be arranged to review the results. Iona came over and sat with her mother while I did some shopping. Euan and Iona dealt with a minor wet bed incident.

Dr Elphick arrived at about 3pm and saw Isobel who was very sleepy. Dr Elphick expressed the view that Isobel's condition now required residential care. Isobel was able to discuss this fairly lucidly and agreed that care away from the home was needed. Dr Elphick corrected a minor error with the Respiridone (sedative) prescription and provided a repeat prescription for other drugs.

After Iona had gone home Isobel had leek and bacon flan with mashed potato and baked beans for dinner, followed by rice pudding. Both before and after dinner there were substantial periods when Isobel was being lifted on and off the commode every few minutes, this is very tiring for us. Isobel settled down to sleep for the night after her last tablet at half ten; I went downstairs and was very sick, possibly as a result of overindulgence in pineapple juice before dinner coupled with physical tiredness.

The first part of the night passed quietly apart from a series of interruptions between 1am and 2.30am. Just before 6am the bed was wet and this started a period of constant lifting onto and off of the commode that lasted until 8am, after which Isobel slept for an hour.

Iona came over while Jon was playing football and stayed until about half one. I retrieved a cat bed from the shed and cleaned it up for Iona's dog. John arrived after football. His team lost 4-1. They went home almost immediately.

Isobel had curry for dinner and did not want the rice pudding after. She slept from 9pm. I had told her that I would wake her at 10pm for her final tablet but she was soundly asleep so I decided to leave her until between 11.30pm and midnight when she could be put on the commode and have her pants changed for the night. At 11pm she was still fast asleep. At 11.15pm I was doing the washing up downstairs. Euan was in his room and heard a loud thud. Isobel had fallen to the floor near the bedroom door and was lying on her side. As this was on the opposite side of the bed to that on which she sleeps and on the other side of the room from the commode it is presumed that she fell while trying to walk out of the room. Although she was conscious she could not explain what had happened and appeared very dozy. She seemed to indicate that she had no pain in her body but was generally unresponsive to questions and appeared to drift off to sleep. I called the ambulance service and a paramedic arrived in less than ten minutes with an ambulance a couple of minutes after. Isobel was given a long examination while she lay on the floor, the conclusion being that vital signs were normal and she did not seem to have done herself any injury. Euan and I were interested to see that when the paramedic and ambulanceman manhandled Isobel back into bed they were no more sophisticated in their lifting technique than we were. The paramedic left once Isobel was on the bed. Isobel was further checked over once she was back on the bed and eventually was able to answer questions normally (actually rather better than normal). Isobel was still unable to explain how she had fallen or what she was trying to do at the time. It seems likely that she hit her head fairly hard on the carpet when she fell but no harm was done. By the time the ambulance crew had recorded their findings and left it was a quarter to one. Isobel had a leisurely mug of tea to wash down her final tablet and watched television for a while; then she was then settled down for the night with a fresh pair of pants. Within less than half a minute (I was still emptying the commode) Isobel had partly pulled her pants down and wet the bed. The changing of the bed took longer than usual as the mattress protector was not completely dry after being washed during the day and Isobel had to wait while it had another half hour in the tumble dryer. I stayed up a little longer waiting for the wet bedding to finish in the washing machine so that i could transfer it into the tumble drier in case of another accident. I finally got to bed at half past five.

Once again the first part of the night was broken up by many toilet interruptions but Isobel slept solidly for the last few hours until after 9am. The morning was fairly relaxed. Iona came over in the afternoon for a few hours.

Isobel dozed on and off for much of the late afternoon and evening. She had chicken risotto for dinner but turned down the offer of rice pudding afterwards. She went to sleep soon after 9pm. This was one of the least difficult days of the past few months. Isobel is not able to do very much for herself, but apart from repeatedly lifting her back into bed there was not a lot for us to do today. Isobel was able to speak in short sentences which made sense, but when she tried longer conversations it was very difficult or impossible to understand what she was talking about; this is normal for most days now.

Isobel had a fairly disturbed night. She was constantly restless although apparently asleep. Every half hour or so she did wake up and wanted the toilet, needing to be lifted back into bed afterwards. At about 6am she went soundly to sleep and slept until almost 10am when the bed was soaked. Isobel sat up and breakfasted while the cleaning up was going on and felt tired afterwards.

After lunch Iona came over. Following a phone call a representative of the nursing home called to do a "pre-assessment" on Isobel before admission. She seemed to want to spend most of the time talking to me and her talk with Isobel was rather cursory, however she seemed satisfied when she left although she said she needed to talk to her boss before confirming the admission arrangements. Iona and Euan sat with Isobel while I collected her prescription. A phone call from Tracey Cook was taken by Iona, some problem had arisen with the nursing home. Subsequently Tracey Cook's boss phoned and confirmed the nursing home arrangements had fallen through and the "absolute guarantee" of respite care this week would not be fulfilled. We had foreseen this coming and Iona gave our agreed response - that we could just about get through the weekend but must have respite early next week. Afterwards Euan and Iona did the shopping and Iona went home for a couple of hours before returning with Jon.

The children gave me the evening off and I went to the London Borough of Bexley town twinning quiz with Donna and Denis. The original plan about five weeks ago was to try and take Isobel to this, but it is completely impossible now to do anything like this. While I was away the children fed Isobel on pizza. Iona stayed with Isobel, who slept much of the evening, while Euan and Jon played computer games downstairs. I got back earlier than expected, about 10pm, having won the quiz and the raffle, so not a bad evening. We won by a large margin and have won this quiz every year but one, however this is the first time Isobel has not been on the team. Isobel was awake at 10pm but went back to sleep by 11pm.

Isobel woke at 1am and was perfectly calm. She confirmed she was not hungry. She had a drink and took her second sedative tablet. The strange behavior earlier may have been due to varying sedative levels as the timing of tablets has been a bit variable over the past three days. Isobel went back to sleep at about half one until half six when the bed was found to be wet. Isobel went back to sleep from 7am until after 9am. Sarah Parker from the Ellenor phoned and we arranged for her to fax details of the sedative prescription to the Albion Surgery so that I could pick up a repeat prescription.

Iona came over in the morning and spent time upstairs with her mother. Just after 3pm Tracey Cook 'phoned and asked how yesterday's assessment by the nursing home had gone! Although I had the impression they would contact us either yesterday afternoon or today (and had been on the point of 'phoning Tracey to find out what was going on); Tracey believed the nursing home had made a definite arrangement to contact us yesterday, she said she would chase them up.

When I went to the surgery to pick up the prescription it had not been prepared and they could not immediately locate the fax from the Ellenor. Eventually they found a reference in Isobel's records that would enable them to prepare the prescription, it will be ready for collection tomorrow morning.

With some difficulty I got Isobel into the bath and Iona washed her hair. For the first time I was completely unable to lift Isobel cleanly out of the bath. Eventually Euan and I managed it between us, with Euan taking most of the weight. We had a lot of trouble getting her back to the bedroom and she sat on the floor twice. By the time she was back in bed both Euan and I were exhausted. Iona went home. Tracey Cook 'phoned again to check that the nursing home had contacted us, I confirmed we had still heard nothing, she seemed shocked.

Isobel had beef hot pot for dinner, followed by chocolate ice cream with strawberry and raspberry jelly. Isobel went to sleep soon after 9pm.

Isobel slept until about 9am; there were not many interruptions during the night. The morning was relaxed, without too many problems. Tracey Cook rung to confirm a place had been found for Isobel, it would certainly be finalised this week. Iona arrived fairly late and soon afterwards took another 'phone call from Tracey Cook. She confirmed that a place suitable for Isobel had been identified in New Eltham. Over the past couple of weeks a problem had been that because of Isobel's combination of serious nursing requirements together with behavioral and mental heath issues, very few nursing homes could cope with her. Most of these were licenced to take over 65s only (and tended to contain mainly people in their 80s and 90s) and so could not legally take her. Tracey said that there was a suitable home in New Eltham that although mainly for old people had a young persons unit. In principle they would take her but wanted to do an assessment here, probably later this afternoon.

Iona went home soon after 2pm. The rest of the afternoon was problem free but nothing was heard from the nursing home who will presumably be in contact in the morning.

At 5.30pm. there was a sudden change in Isobel's behavior. We had been sitting quietly on the bed before dinner when Isobel began to talk about the need to go at once to Norfolk. This topic had not been raised since sedation begun. Within a minute the shouting and swearing that we had not heard for a couple of weeks began again. This continued for about an hour. Isobel refused food and drink and eventually fell asleep exhausted shortly before 7pm. After about an hour, Euan and I decided the best course was to allow her to sleep on and offer food, drink and the evening sedative tablet when she awoke.

Isobel and I were both still fast asleep when the 'phone rang soon after 8am. It was Iona who had been standing on the doorstep for ten minutes ringing the front door bell! We had a leisurely morning, Isobel was rather tired and her speech was not very good. Iona went home to catch up on housework before we had a late lunch.

Euan and I were both very tired after the physical exertion of the previous day. We sorted out the food planning and Euan went to the shops. We were still having to do a lot of lifting in the afternoon. At about half four Liz 'phoned regarding tonight's meal - I had completely forgotten that she was cooking dinner and bringing it to our house. Keith and Liz arrived at 7pm and Liz cooked the potatoes while I got Isobel ready. Euan and I brought Isobel downstairs for only the second time since the 29th September. The descent of the stairs was tricky but rather easier than we had expected.

Isobel had beef casserole, riced potatoes, broad beans and green beans. She managed to feed herself the whole meal with minimal help. Apart from providing the delicious meal, Liz did all the washing up almost unnoticed. After the meal, Isobel said that she was very tired and needed to go back to bed. Euan and I got her upstairs in about fifteen minutes with a very great deal of effort (Keith was in reserve but I wanted to try and avoid his help as it would not be on hand on other occasions). Having done the hard work, Euan went to his room and I guided Isobel to the edge of the bed, where she suddenly threw herself backwards towards the wall. All I could do was to guide her gently onto the carpet. Euan came back and we lifted Isobel then rolled across the bed. This sort of incident adds to the difficulty of looking after Isobel as you can never be sure when something unexpected will happen. Isobel went to sleep almost immediately, before 10pm.

Isobel slept until almost 9am. The first part of the morning was a continuation of the relaxed atmosphere of yesterday. Iona came over at about half ten.

The unusually calm atmosphere was punctured by a 'phone call from the Bexley continuing care team (we have not previously had any direct dealings with them) to say that the lengthy forms filled in last week were still incomplete and a call would be made at 2pm to map Isobel's bruises and assess her falling. As a result of this information not being included in the forms, Isobel had not been considered at Friday's committee meeting but would be considered at the coming Friday's committee. Bearing in mind the effort put into providing the reams of information we were asked for and the assurances we were given, this was most disappointing.

When the call was made at 2pm, it was not what we had expected. Some rather cursory questions were asked about Isobel's fits, falling and eating. Some useful practical hints about manhandling her were given. There will be a respite break this week and long term care will be confirmed early next week. Isobel's speech suddenly improved during the meeting but was back to normal immediately afterwards. Towards the end of this meeting Isobel became very upset and started crying: this is very unusual. Isobel continued to be distressed for several hours after the meeting. Isobel was not able to explain exactly why she was upset, but it was connected to hearing us talk about her during the meeting. There were many attempts in the following few hours to move around the bedroom and Isobel ended up on the bedroom floor three times, although only one was really a fall, the others were just gently slidings off the bed. Each time she was on the floor it was very difficult to get her back into bed as she cannot help herself at all, but pulls and pushes in a way that hinders us a lot as well as sticking her legs out horizontally. Euan hurt his bad shoulder again while I pulled a muscle in my thigh; the rate of attrition on us is not sustainable. The whole atmosphere of the day changed after the meeting.

Isobel had ham and mustard flan with boiled potatoes and baked beans for dinner, followed by lemon and blackcurrant jelly with ice cream. After the meal Isobel calmed down and was asleep by soon after 10pm.

Today was probably the most restful day for several months; not much happened.

Isobel slept until almost 10am, we had a night with only a few interruptions. Iona came over and we lounged around in the bedroom until I went downstairs to watch the Caerlŷr versus Ospreys game (an exciting 32 all draw). Iona collected Euan from Gravesend. Iona dealt with Isobel's only fall onto the floor of the day - Euan is still suffering from the injured shoulder he sustaining when catching Isobel a couple of days ago. After Iona went home, Euan watched Isobel while I did the shopping.

Isobel had Spanish omelette and cheesy mashed potatoes for dinner, followed by rice pudding. Afterwards she had an ice cream cornet and was asleep before 10pm.

Isobel was fairly happy throughout the day. Her speech was still very rambling if she tried to maintain a long conversation, but she was slightly better at standing.

Isobel had a less disturbed night than usual and managed periods of two and a half hours and three hours unbroken sleep; she did not finally wake until 10.30am. She was alert until late evening.

During the morning Isobel made a number of attempts to leave the bed and landed on the floor once. These attempts usually happen a few seconds after someone has left the bedroom. Liz called round with a packet of doughnuts on the way home from the shops but did not come in. Shortly afterwards Donna called, also with a bag of doughnuts, how odd. Donna stayed for over half an hour. On my way back from the shops I bumped into Wendy Williams the district nurse, she had not heard the outcome of yesterday's committee meeting. During the afternoon Isobel left the bed on a number of occasions even when someone was with her. She landed on the floor on one occasion, I had a real struggle to get her back into bed as she hung onto any furniture she could reach and pulled against my lifting. As she is at about the limit of weight I can lift, pulling against the lift is an effective way of preventing an easy return to bed. Another technique Isobel uses is to kick her legs straight out when being lifted, producing a sideways force. Isobel says that these are attempts to help, although they have the opposite effect. Apart from the physical effort of lifting Isobel, the afternoon was relaxed and pleasant.

Iona came at about 5pm and stayed with her mother while I drove Euan to Gravesend where he will stay overnight. After Iona left to meet John, Isobel had baked chicken, chips, sprouts, carrots, sweetcorn and peas for dinner. She did not want any more food afterward. Isobel was asleep by 10pm.

It was another disturbed night with many toilet breaks and a great deal of heavy lifting. The lifting burden now falls entirely on me as Euan hurt his shoulder badly preventing Isobel falling backwards onto the windowsill yesterday. It was almost 9am before Isobel woke finally.

After breakfast Iona arrived and we all sat on the bed chatting until just after 11am when Wendy Williams 'phoned to say that Tracey Cook was on her way with forms to sign and a personal statement was required from me; she would be in a hurry as she had to be at Queen Mary's Hospital by noon for the committee meeting. I was concerned that we had not fully demonstrated the seriousness of our problems yesterday, but did not need to make any effort to appear as a totally shattered carer when Tracey Cook appeared at half past eleven. I signed various forms and hastily scribbled a personal statement including a "the last time my wife died from a brain tumour in 1974" reference which should make the bureaucrats think carefully. It appears that input from the crisis team and the Ellenor Trust has been linked up with yesterdays assessment, the recommendation is for urgent residential care. Tracey even seem prepared to offer some help in the house over the weekend, but, on the basis that she was guaranteeing a permanent solution by the middle of next week, I said we would gallantly struggle on over the weekend.

Iona spent the afternoon upstairs with her mother, then went home. I was due to see Dr Patel at 5.40pm, planning originally that Euan would mind his mother while I was out. Claire offered to take Euan out for the evening, collecting him after work and I suggested he should have a break, especially as he was not able to help with lifting. I arranged for Liz to cover while I was at the doctor's and Keith came over with her. Dr Patel confirmed my very high blood pressure reading but the heartbeat was OK and the lungs were wheezy. As expected the problems including chest pain were likely to be due to stress, muscular strain and tiredness; these were causing a resurgence of asthma, increased heart-rate and high blood pressure. I will need to start using the relievee inhaler as well as the preventer inhaler and as a precaution will have some blood tests next week. We arranged that next Tuesday Keith and Liz will come for dinner, bringing the first course with them.

Isobel had chicken casserole for dinner, followed by apple and blackberry crumble. She was settled down for the night by 10pm. Euan arrived home at 1.20am.

The night was disturbed, broken by frequent visits to the commode and a wet bed at 6am. Isobel was very tired in the morning (I was shattered by the effort of lifting her many times and felt poorly - my blood pressure had gone up a lot). Iona arrived at 9am.

Tracey Cook and the district nurse Wendy Williams called at 9.30am and the morning was spent filling out the new assessment form. The previous form filled out on Tuesday was only 30 pages of detailed questions. The new form is 48 pages, but does not seem to ask much about the actual problems of caring for Isobel. Isobel spent the morning minimising her problems and being atypically cooperative. It was difficult to get across the extent to which Isobel's behavior is being temporarily controlled by sedation. The district nurse had not seen Isobel in the weeks leading up to the intervention of the crisis team. We seem to have passed in two days from a situation where Isobel's medical needs were paramount to a bureaucratic maze where assessments are made by persons who are unaware of Isobel's difficulties and local authority committees that operate on the basis that "funding is the most important issue". At one point it was suggested that "someone coming in" a couple of times a week to give Isobel a bed bath would solve her problems! I asked Tracey Cook whether the assessment would take account of the report from Steven Jones, head of the crisis team; she said that she did not know about this but would look for it.

After lunch Iona and Euan did the shopping while Isobel slept and I dozed. Isobel woke every few minutes to use the commode and the last twenty four hours she has needing lifting into bed more often than ever before - although during the long morning meeting she had not needed to go to the toilet at all.

For dinner Isobel had chicken in basil sauce with potato slices, followed by ice cream. Later she had garlic bread. She was asleep by 10pm.

Today did not start well. Isobel was still asleep at 9,30am when Sarah Parker from the Ellenor Trust phoned to report a major problem. Without notice Bexley Council had changed the referral system from the 1st October and now required a different report from the one completed at great length yesterday. The district nurse, Wendy Williams will come round tomorrow in order to go over the same ground again in a different format. At the least, this appears to mean a weeks delay as the referral will not be pre-checked today and presumably will not be assured smooth passage at Fridays committee meeting.

Isobel seemed more tired today although on one occasion she walked better in the morning. Iona came over in the later part of the morning; Isobel was bathed; this operation is always difficult but she does not like using the shower which would be much easier. Isobel had more long rambling incoherent conversations today, often it was impossible to understand what topic she was trying to talk about, this is all very depressing.

Liz came over in the afternoon bringing food supplies from her school again. Liz left at abut 3pm and Iona left a bit later to deliver a letter about Isobel to Hillview. Tracey Cook from Bexley's Care Central 'phoned to say that she would be at tomorrows meeting with Wendy Williams, this was set for 9.30am. Seywag called round later to give Isobel a short discharge questionnaire - she still claimed to be able to do housework! He said that his boss, Steven Jones, had written a good letter yesterday in support of the need for Isobel's long term care, and reiterated his view that long term care outside the home was needed as her needs had become so severe.

Isobel had chicken hot pot for dinner followed by ice cream and soft fruits. She stayed awake until after midnight.

Isobel slept until 8.40am. Soon after breakfast Iona arrived, then Sarah Parker called as arranged. Completing the assessment took the best part of two and a half hours. Euan joined us for the latter part of the assessment. For many of the categories Isobel's needs were considered severe, for others moderate while a few did not apply. It came to light that there had been a day on which Isobel used violence at the hospice; kicking, punching and threatening to bite. We were not previously aware of this, I guess it was the day that Steve said she had been aggressively uncooperative. This explains why the hospice at once declared she was too difficult for them to handle when the question of respite care was raised a couple of weeks ago. It was agreed that the sedatives were wholly responsible for the calming of Isobel's behaviour over the past ten days, Isobel confirmed she had felt happier since she started taking these drugs. We discussed the need for respite now. Sarah made the point that if this assessment was made for a respite break, a whole new set of references and assessments would be needed for any further care. She was clearly of the opinion that long term care was required and stressed that this would allow us to take Isobel out of care for odd days or even weekend breaks. We all agreed that the rate of deterioration of Isobel's condition could result in her not being fit enough to return home after a respite break. I believe that Social Services also view the need as being for long term care, no doubt swayed by the views of the crisis team, especially Seywag. The assessment was therefore put forward for long term care. This was explained to Isobel who followed this part of the discussion carefully. She confirmed that she understood and agreed with the proposal to care for her outside the home.

The assessment will be pre-vetted by the chairwoman tomorrow afternoon and be considered by the resources committee on Friday. Although the place at which Isobel will be cared for has not yet been decided, the front runner is apparently just the other side of Dartford, close to Iona's house.

After the meeting Iona went off to lunch with Louisa and Teri from the school. After lunch Isobel lay in bed and watched television all afternoon. This is now normal and is about the only activity she can do and enjoy.

For dinner Isobel had chili con carne and rice, followed by apple crumble. Afterwards there was a wet bed to deal with and afterwards Isobel had coffee and biscuits before going to sleep just before 11pm.

Well, we still have Isobel with us. There was a lot of behind the scenes activity today involving social services and the Ellenor trust; I won't go into details but the upshot is that Sarah Parker from the Ellenor Trust is coming to do a very long assessment with us at 9.30am tomorrow - it will take several hours at least! This sounds like an assessment for long term care and it may well be that we will be confronted by medical opinion that respite care is not enough. Personally I would settle for a week or two of respite care.

Isobel woke just at about half eight this morning. There were a number of "accidental" exits from the bed for one reason or another. These usually took place just after I had left the bedroom, not during the 90% of time I was with her. The strangest episode occurred when I went downstairs to make tea and breakfast. Isobel somehow got out of bed and made it to the bathroom, running a little water into the bath and getting into it. This is atypical, as she usually cannot get to her feet unaided. I could not get her out of the bath afterwards and had to ask Euan to help. By half ten I was exhausted from continual lifting of her and the bed was wet, this time penetrating to the mattress. Iona arrived and we moved Isobel downstairs for lunch, she lay on the hospital bed with very bad grace

Isobel remained in the hospital bed for dinner of two pizzas. Afterwardshe moved back upstaurs and was asleep by 11pm.

Isobel slept until a few minutes before 9am. She insisted she did not need the toilet but ten minutes later the bed was wet. Iona arrived as the changing was taking place and helped out for the rest of the morning. Jon arrived at lunchtime fresh from scoring in another victory for his football team. Isobel had a late lunch. Jon left to visit his parents and Iona later left for home, having arranged to bring Euan back from Gravesend in the evening.

Isobel was alert but her speech was a mixture of short coherent sentences and long incomprehensible rambling one sided conversations. She was able to stand slightly better, although still needing support and a lot of help balancing. When trying to move, she is unable to lift the right foot off the ground unless it is lifted for her.

For dinner Isobel had steak pie, boiled potatoes, carrots, sweetcorn and peas. Afterwards she had tiramisu. Euan arrived and went to bed almost immediately. Isobel was still awake watching television at midnight, showing very little sigh of tiredness. Isobel is aware of the planned respite care and says that she agrees it is is needed, but I am not at all sure how she will react when the time to move comes.

Perhaps it would have been wiser if Euan and I had not stayed up until after 5am talking. However, now that a respite from very demanding tasks is in sight, and as the work of caring for Isobel has become easier as a result of the mild sedation, we have begun to relax for the first time in many months. It was therefore my own fault that I felt very tired when awakened by a loud bump at 6.30am to find Isobel had fallen onto the floor. It took a lot of effort to manhandle her onto the commode and then back into bed. Isobel slept on until almost 10am.

It is now usual for Isobel to spend the day in bed, as the stairs have become in the last couple of weeks a challenge that we do not tackle unless there is a very good reason. Isobel says that she feels more comfortable lying flat, she has certainly begun to have difficulty in holding a sitting posture. Breakfast passed uneventfully; a lot of effort was expended in repeatedly moving Isobel onto the commode and back into bed. Iona arrived at lunchtime and stayed until 5pm. Dallas dropped in during the afternoon bearing a large home made walnut and coffee cake; for a change we failed to eat all this today! When Iona left, she took Euan who is staying overnight in Gravesend. Dallas left at about 6pm. Isobel dozed for a short while before dinner.

Isobel had corned beef, mashed potatoes and baked beans for dinner followed by rice pudding. She fell asleep about 10.30pm.

Isobel slept until almost 9am. Breakfast went smoothly and Isobel drank a lot of fluid during the morning. This gave rise to problems when Isobel tried to use the commode while I was downstairs on the 'phone. Although we had agreed she would call downstairs for assistance and not attempt to move, this was not followed in practice. On one occasion she fell onto the floor, on another the carpet was soaked, on two others she was half on and half off the bed and on another two she became stuck on the commode. Because her short term memory is so impaired, she will agree to one thing but within a minute have forgotten it and will take the opposite action. The lesson from this morning is that Isobel cannot be left for any significant time (i.e. more than five minutes) on her own.

I spent most of the morning on the phone. I spoke to Debbbie Manners (who we knew from last year) at Social Sevices and provided a long description of Isobel's circumstances. She advised self referral to Bexley's "Care Central" in order to save time. I spoke to Care Central and completed a long application form over the 'phone. I was promised a call back in the afternoon, but it came within a few minutes and required the supply of more information before being promised a call this afternoon again. Seywag from the crisis team came round to drop off the new sedative prescription. he said that he had been contacted earlier by Social Services, he had told them he thought the situation would require long term care. Tracey Cook from Care Central 'phoned back in the afternoon to check if we could survive the weekend - she assured me something would definitely be sorted out by Monday. On my way up to the pharmacy I was accosted by the District Nurse and updated her on developments.

During the day Isobel seemed to have a little more strength in her legs, but her balance was still very poor. She could stand on her own for a few seconds but could not be described as stable. Very often her speech became more rambling and incomprehensible, almost reminiscent of the worst periods last week, but sometimes short conversations were rational.

At 6.30 pm a wet bed had to be changed. Isobel had mixed curry, rice, onion bhajis and nan bread for dinner. Isobel dozed off soon after half ten.

Isobel slept until 8am. She breakfasted, took her medication and bathed, somehow this took until 11.30am. Iona came in at lunchtime. Isobel was again not able to stand without assistance. She was able to walk ten yards to the bathroom with a lot of support and assistance but was very tired afterwards. Lifting her on and off the commode is still tiring. The appointment for the MRI scan came, the 27th October, we had hoped it would be sooner.

Using a method suggested by the crisis team I took Isobel's blood pressure while lying flat then after standing. If the standing problem was being caused (or made worse) by the sedation, a fall in blood pressure would be expected after standing up. The readings showed systolic pressure hardly changed and diastolic pressure raised after standing. The conclusion is that the sedation is not causing the standing problem, there is some other cause, this is presumably disease progression.

The meeting planned for 2pm had somehow been rescheduled to 2.30 without my knowledge. Several people were unable to attend owing to other events and crises, but it was disappointing that in the end it consisted of only Sarah Parker from the Ellenor Trust and Seywag from the Mental Health Crisis Team. It was agreed that Isobel needed respite care. It was also agreed that the mild sedation had worked remarkably well, I said that it had not only calmed Isobel down but also made her happier. Seywag wondered whether the already low dose could be reduced further. I said that sedation was not preventing Isobel being alert but was producing very beneficial effects, I suspected lowering the dose would lead to a re-occurrence of the violence and unhappiness of last week. Sarah accepted that taking account of the effect of the sedation, Isobel could be looked after by the hospice, but at present all beds were full in the Cottage Hospice. She would investigate other possibilities available through the Ellenor Trust but was not optimistic about coming up with anything in the short term. Sarah was also concerned about problems at discharge after, say, two weeks respite break. We agreed that the deterioration in her symptoms would result in her care needs being greater on discharge than on admission. Various technical fixes such as hoists were discussed but it was unclear that these could produce a safe solution. The normal referral route from the crisis team is through the district nurse to Social Services. To save time I will self refer tomorrow direct to Social Services, I foresee this not being straightforward. As he left Seywag said that he could see respite care turning into long term residential care, because of Isobel's deteriorating condition.

After Sarah and Seywag had left, June arrived bearing delicious home made muffins, we ate them all within an hour! June stayed for an hour and a half.

Isobel had Chicken Kiev, chips, broccoli and carrots for dinner, followed by rice pudding and caramel shortbread. She was asleep by 10pm.

This is a late posting of Wednesday's events, delayed by Internet failure last night and a busy day on Thursday.
At 2.30am the bed was wet, it was changed and Isobel was asleep again by 3am. I left Euan to look after his mother while I went over at half seven to collect Iona who had left her car at our house. Isobel slept on until 10am. She had a leisurely breakfast and remained in bed. Euan and I were both very tired from lifting Isobel, today she again could not stand on her own.
Iona came in at lunchtime. as soon as she had left, my sister in law Liz arrived as she had no classes to teach in the afternoon. Liz brought food supplies from Townley Grammar which ate as her lunch. Liz stayed about an hour and a half; Isobel rested in bed all the time.
For dinner Isobel had ham and mustard flan with mashed potatoes and baked beans. She dozed afterwards but then woke and was hungry at about 10pm; she had rice pudding followed by chocolate pudding. She went back to sleep at about 11pm.