Tuesday, 29 September 2009

Preparations for the trip to Maidstone started soon after 6am although I let Isobel sleep on until 7am. It was a rush to get ready and then collect Iona on the way. This was the first time Euan had come to Maidstone Hospital.

Dr Sadler had planned to send Isobel to Kings College Hospital for a psychological investigation but, after hearing what has happened over the last couple of months and speaking to Isobel for some minutes, decided this would not now be of value. Instead there will be another MRI scan followed by a further meeting with Dr Sadler. I suspect this indicates she believes tumour regrowth is occurring but I saw no point in asking her to speculate with Isobel present. The last blood test showed the level of anti-fitting drug was a little lower than expected so the intake will be slightly increased to take account of this. I think this was an acceptable outcome to the meeting, although it would have been better if the scan had been done earlier.

Seywag from the crisis team came round in the afternoon to check that Isobel was OK. We will have a meeting here at 2pm on Thursday afternoon to discuss the respite care. This maybe for two weeks instead of one. The hospice nurse will attend, the GP will "have some input" and the crisis team doctor may appear if he gets away from a previously organised meeting; I think the mental health people hope to convince the Ellenor Trust that sedation has worked so well that the hospice could cope with her.

Today Isobel's walking has been very poor again, barely able to stand at times. Her speech was moderately bad in the morning, she did not make much sense when talking to Dr Sadler; in the evening she was almost completely incomprehensible.

Isobel had fish, chips, onion rings and peas for dinner, followed by ice cream. She was asleep by 9pm.

Monday, 28 September 2009

Am early posting tonight as we must be up before dawn tomorrow for the appointment with Dr Sadler, the consultant oncologist at Maidstone.

Isobel woke at half eight. The bed was wet. After a short discussion we agreed that she was unfit to go to the hospice today - all she wanted to do was to lie in bed. I had a chat by 'phone with Tanya at the hospice and explained the situation, we hope Isobel will go there on Thursday. Isobel breakfasted and took her medicine. At first she was able to walk, rather unsteadily, when required. By mid afternoon she was unable to support her weight and was unable to walk in any meaningful sense. It has been very hard work manhandling her around. She was calm for most of the day. Iona called in for lunch. A number of friend's 'phoned during today, in the circumstances we have put off any visits until Isobel is stronger.

Wendy Lethem from the Ellenor Trust 'phoned in the afternoon, I updated her regarding the week-end's events and will talk again after tomorrow's consultation. A few minutes later Seywag from the crisis team phoned, I updated him. The planned meeting took place this morning, it has been agreed in principle that residential accomodation is required but it has not been decided where. He will phone about noon tomorrow and come round if we are back from Maidstone. He advised not taking the morning sedative until we returned from Maidstone, in order to give Dr Sadler a clearer view of Isobel's condition.

Isobel had beef tagliatelli for dinner, followed by rice pudding. She was settled down to sleep at 9pm.

Sunday, 27 September 2009

A calmer day today. Isobel woke at about 8am; breakfasted and drank a mug of tea. She took her medicine without any problems.

Iona arrived at 9am and took over - she got her mother bathed, washed her hair, and settled her back into bed. Although Isobel was rather tired, she was much more alert than yesterday and her walking was back to last weeks average, yesterday she had not been able to support her own weight when standing.

Seywag from the crisis team called at about 11am and stayed until shortly after mid-day. We completed lots of paperwork and discussed future care. There will be a meeting on Monday morning to decide on an appropriate place for respite care - Isobel is too difficult for the hospice and the usual mental care centre at Crayford could not cope with her complex nursing needs. For the moment the pressure has been taken off by the success of the low dose sedation. This just cuts off the extreme behaviour and makes Isobel more relaxed, I had not expected it to work so well and she has been happier today.

We were due to visit the Daniels for tea, but Isobel decided she was too tired to move, so Donna and Denis came to visit bringing scones and jam etc. We dined in the bedroom and Isobel enjoyed herself. Isobel stayed in bed all day but was much more relaxed. She had beef hotpot for dinner followed by garlic bread. She went to sleep at about 11pm.

Saturday, 26 September 2009

This posting covers both Friday and Saturday.

As soon as Isobel awoke on Friday morning she refused to eat or drink. She would not bath, wash or allow herself to be otherwise cleaned up. There was a limited amount of shouting and swearing but no violence. After she had persisted with this attitude for almost two hours I 'phoned Wendy Lethem at the Ellenor Trust. Wendy believes that Isobel's behaviour is too extreme for the hospice to deal with as an inpatient. She was not sure what alternative solutions were available but would discuss them by 'phone with Dr Shah (the duty GP at the Albion Surgery). I had a chat with Dr Shah at the surgery; she was not certain about what provision would be best or was available. In the first instance the Bexley Crisis Intervention Team would call and weigh up the situation. We agreed that mild sedation might calm Isobel enough to make management of her needs possible in the short term. I said that in any case, bearing in mind that it was Friday afternoon, we would be able to get through to Monday apart from the refusal to drink problem, but could not sustain this next week if the behavioural problems continue. After I returned home I got Isobel to drink a mug of coffee, her first fluid since Thursday night, but she would not drink any more afterwards. Iona was here after finishing early at school.

The crisis team (a doctor and a mental health worker) arrived in the late afternoon and Isobel came downstairs in her dressing gown to talk to them in the back room. They gave Isobel the usual array of questions, she was not able to say what day of the week it was, or the month or the year, but she could name her children (she has been calling Iona Jess almost all the time over the past two weeks!). She was not able to coherently describe how she saw her conditions or what she felt the major problems were. The doctor was able to convince her to drink, she drank over a pint during the meeting. Isobel took today's medication during the meeting. A mild sedative was prescribed and arrangments made for further visits during the weekend. Iona went home after the team had left.

Isobel ate a large plate of curry for dinner, and had rice pudding afterwards. She drank several mugs of tea during the evening. Isobel took the first sedative tablet. There was some resistance to changing pants but this was eventually done. The mental health worker came by at 10pm and dropped off some paperwork and contact details. Isobel went to sleep at about 11pm.

On Saturday morning, Isobel was very drowsy when she woke. She ate breakfast, drank and took her medicine but did not want to bath or wash. She was very quiet, presumably the effect of the sedative. Iona came and stayed until late afternoon when Jon came back from playing football; they took the death certificate for Jon's grandmother's brother who had disappeared in the 1970s; he had died of TB in a hostel for the homeless in 1994.

There were no major problems for the rest of the morning. Isobel stayed in bed and apart from the washing refusal generally went along with our care for her. Isobel had chicken nuggets for lunch.

A different crisis team called in the afternoon and we were able to report that care was easier to achieve. Isobel had pizza and garlic bread for dinner and continued to drink tea. She went to sleep just before 11pm.

Thursday, 24 September 2009

Today was a very demanding and worrying day that does not bode well for the future.

Isobel was woken at 1am in order to go to the toilet, but the bed was found to be already wet. She was rather grumpy while she was cleaned up and the bed remade, but was asleep again by 2am. Isobel slept until half eight, by which time her bath was already run and tea made. She was in an extremely uncooperative and aggressive mood and refused to bath or allow herself to be washed or cleaned up in any way. It has at times been a considerable struggle over the past few weeks to attend to her hygiene, the main difficulties relating to teeth cleaning (refused on two days out of three, although mouth wash seems to have prevented any problems) and changing of wet pants which often requires lengthy negotiations. Today her refusal to bath or allow any alternative cleaning up was accompanied by incomprehensible rambling talk, much shouting and swearing and considerable violence in the form of punching and slapping. I was bitten once more, on the forearm.

For almost three hours Isobel sat on a stool in the bathroom. She would not drink tea that was brought to her - she had not drunk anything since before 10pm yesterday. Isobel also refused to eat breakfast, nor would she agree to take her medication. Isobel was due to attend the hospice day centre today, but refused to get ready and did not go. Her justification for this was that the hospice had closed - the same argument had been used on Monday and Tuesday and most of the days over the past three weeks, although previously she has always eventually attended. Throughout this time she continued to talk incoherently about various actions she had been told by unspecified persons she was not to do, such as bathing or showering. Eventually we put clean pants on her and she settled down in the bed, still refusing to eat or drink. Iona popped in for lunch.

Isobel was still convinced that we should go to see her mother in Norfolk today, this has cropped up on most days over the past two weeks and sometimes it has been necessary to get her to speak to her mother by phone in order to convince her that she was not expected to visit. I eventually got her to drink half a pint of orange juice at 2pm, her first fluid since before 10pm on Wednesday. She agreed to eat a bowl of cereal if she could first speak to her mother by telephone (she has not been able to dial numbers herself for some time). After speaking to her mother she accepted that there was no arrangement for a visit to Norfolk today and duly ate a large bowl of cereal. She still refused to take her medicine as "she did not need it and did not want it".

Iona returned after finishing early at work. I made several phone calls to Sarah Parker at the Ellenor Trust but was unable to speak directly to her. We arranged for a home visit on Wednesday the 30th and I will phone Wendy Lethem tomorrow morning if problems arise. It was suggested that a GP visit would be a good idea but Isobel says that she will refuse to see a GP.

It had previously been arranged that Isobel's friend Rosemary would call round at 4pm. Isobel had indicated earlier that she did not want to see Rosemary, so I had left a message on her 'phone to cancel her visit. Rosemary however came straight from work, as she had not got the message. Isobel still refused to see her, but Rosemary and I had an interesting conversation. Rosemary and her husband looked after his mother, who developed dementia (she is 89 now). Rosemary's mother in law had shown behaviour very similar to Isobel's, we swapped accounts that were virtually identical. Eventually Rosemary's mother in law had to enter a home as her behaviour became unmanageable - a possibility that Euan, Iona and I had discussed at lunchtime as it has been very difficult to care adequately and safely for Isobel in the last couple of weeks.

After Rosemary left, I sat with Isobel in the living room for an hour and a half while she conducted a bizarre conversation centred around various prohibitions ordered by unspecified people and a desire to leave at once for Norfolk. She refused to drink coffee that had been made for her. At times Isobel became very agitated and shouted, screamed and swore, but she did not use physical violence. For dinner I cooked Isobel sausages, citrus slices, onion rings, carrots and peas. She would not touch her meal as she claimed it would kill her. Isobel became extremely distraught when I ate my dinner, assuring me I would be dead tonight as a result, and that she would kill me herself in any case. We had a conversation lasting for a couple of hours in which Isobel said nothing rational, but was very distraught for much of the time.

Isobel went up to bed at about 9pm. She watched television and dozed intermittently. I was able to get her to drink a mug of milky coffee and eat four Hobnob biscuits. Afterwards she had rice pudding. I am not too concerned about the limited amount of food she has ate today, but she has not drunk enough fluid. She refused further drinks, and continued to refuse to take her medication. On the evidence of the previous episode when she refused to take her medicine for four days, the lack of steroids will not cause a drastic reaction but the lack of phenytoin may induce fitting.

Isobel dozed off about 11pm. I removed some sharp objects from the bedside cabinet. The present situation is only sustainable for another day or two. Apart from periods asleep or dozing in front of the television, there seems to have been major dementia for about 90% of the time; this is rather scary and needs at least one person monitoring it all the time and actively engaging her in conversation. Isobel was very unhappy for most of the day.

Wednesday, 23 September 2009

Isobel slept until just after 10.30am. Jane came round to visit soon after half eleven and stayed for almost an hour. Isobel joined in the conversation but was tired by the time Jane left and asked to go back to bed. She took her lunch in bed and watched television or dozed through the afternoon until 4pm when Jackie from Cubs called. Jackie stayed for about half hour but Isobel did not join in the conversation very much. Eventually Isobel said that she was too tired to continue and needed to go back to bed, so Jackie left.

Isobel took her dinner in bed. She had steak pie with mashed potatoes and baked beans. Afterwards she had rice pudding. Isobel was asleep by 11pm. Her walking and balance was similar to yesterday, but she was tired throughout the day and slept for a much larger proportion of the day than she does normally.

Tuesday, 22 September 2009

Today was a better day, all things are relative.

Isobel woke at half seven with a wet bed. I cleaned up the bedroom while Isobel bathed, she then went back to bed for an hours sleep. There were no problems with breakfast and dressing and Isobel went to the hospice at about half ten.

I collected Isobel from the hospice at 3pm. The staff reported that she had a much better day than yesterday and seemed alert all the time. Her walking is greatly improved from yesterday, although this only means that she can cover about ten yards with slight support in a minute or so. On the way home from the hospice we diverted to drop off some medicines at Iona's house; as Iona was ill Isobel did not go in.

Pat Ball and Ursula arrived soon after four and stayed for an hour of so, chatting, drinking tea and coffee and eating walnut cake. I returned to Pat a book marked up as belonging to her son Chris, I think Isobel has had it since she was working at Whitehill School about six years ago! Pat was surprised as the book was actually hers, she had lent it to Chris. By the end of their visit, Isobel's speech had become very difficult to follow. After they had left, Isobel said that she was very tired and would have to lie down in bed. She stayed in bed afterwards for the rest of the day.

Isobel had fish, citrus slices, peas, sweetcorn, sprouts and broccoli for dinner, eating upstairs in bed. Afterwards she had rhubarb crumble. For a brief interval during the evening Isobels speech was much more coherent, but this lasted less than an hour. Isobel went to sleep at about 9.30 but woke up when Euan returned from Germany a little later. She then went to sleep again until just before midnight when she found lying across the width of the bed with her legs dangling over the side. The bed was wet again, so after she was cleaned up, while it was remade, Isobel sat downstairs on the sofa. There was a little punching, slapping, shouting and swearing as Isobel would not accept the bed was wet and needed to be changed. Remaking the bed took a little longer than expected as the other mattress protector was not completely dry after being washed today following the wetting episode this morning. If Isobel continues to refuse to use the hospital bed downstairs and the bed upstairs is getting wet more than once a day a third mattress protector will be needed. Isobel was back in bed and going to sleep just before 1am.

Monday, 21 September 2009

This is a combined entry for Sunday and Monday.

On Sunday morning Isobel slept until about half eight. Iona came round at about half nine. Isobel's walking and balance continues to be poor, although a little better than the low point reached last week. At lunchtime Jon arrived from football, he had a good game, scoring the equaliser and setting up the winner in a 2-1 victory, he was man of the match. He plays at a fairly serious level for Crofton Albion. He and Iona were pleased that I had found out what happened to Jon's great grandmother's brother who disappeared in the 1970s - he died in 1994. Isobel was tired and after Jon and Iona left she went back to bed for a couple of hours.

We had dinner rather late, a very large beef curry; I tried a new combination of spices which turned out rather disappointing. Afterwards Isobel had rhubarb crumble and went to bed to watch television at about 10pm. In the evening Isobel's speech was very incoherent.

At 11.30pm Isobel had wet the bed in three places. Each time she had moved to a new, dry position in the bed, with the result that she had rolled off the fully protected area and the third episode had penetrated to the mattress. The bed needed cleaning and was out of action for the rest of the night, not a problem as the hospital bed downstairs was available for Isobel. Isobel refused to accept that she had wet the bed, claiming it was only sweat. She stayed upstairs while I cleaned the bed, denying that there was any problem and shouting and swearing, but eventually agreed to sleep downstairs. It was about half twelve when she came downstairs. Isobel refused to use the hospital bed and lay on the sofa covered by a throw; not sleeping but complaining that she could not sleep in her usual bed. At 1am I agreed to help her upstairs so that she could satisfy herself that the mattress was indeed wet, as she agreed to sleep downstairs once she had checked this; this was an unwise move. Upstairs Isobel completely lost control and became very abusive and violent. This was full blown dementia with no sense or coherence to her speech or actions. There was a great deal of punching, slapping and scratching. I was bitten four or five times, twice very hard. There was a pattern of about five minutes of violent activity followed by five or ten minutes of exhaustion. This continued, in the bedroom, bathroom and spare bedroom until 7am when Isobel fell asleep exhausted on the spare bedroom floor. When she awoke at 7.20 she was normal again and came downstairs for breakfast. She wet the sofa while having breakfast. Despite her activities during the night Isobel did not seem to be tired, and bathed and got ready as usual for her time at the hospice day centre. Her walking and balance was however very poor.

Iona came round during her lunch break but was not feeling very well. Soon after going back to work she was sick and was sent home. We agreed that I would bring Isobel from the hospice to have dinner with her.

At the hospice Isobel had a quiet day. She had not slept for any long period although she had dozed a bit, but had not seemed to be aware of what was going on - I think this is just the result of physical exhaustion. She had shown resistance to any attempts to assist her, although this is common at home it does not usually happen at the hospice. I took her back the car in the wheelchair, but she had a lot of trouble in helping herself get from the wheelchair into the car. I parked ten yards from Iona's door, but Isobel had difficulty putting one foot in front of the other and it took fifteen minutes to manoeuvre her into the house. It was clear that Iona would have difficulty getting her mother to the toilet, but we decided I would go home to get half an hours sleep. I collected Isobel at about half six, she had Chicken Kiev and citrus slices for dinner at Iona's. She was hardly able to walk at all, even with a lot of support. At home she had a cup of coffee and some biscuits before going to bed at about half eight.

Saturday, 19 September 2009

Isobel slept until half past eight. Iona and Jon came round at half nine. Iona helped to get Isobel ready and looked after her while I went to the shops. Jon went off to play football at 1pm, Iona gave Isobel and myself a lift to Keith's house for the final Saturday of the tri-nations - Keith had recorded the New Zealand:Australia game for us earlier in the morning.

Everything went smoothly until half time, when Isobel needed to go to the toilet. She had been lying on the sofa and was unable to stand up. Normally she will accept a helping hand, and the problem is solved in a few seconds. On this occasion she refused all offers of help and became very agitated and angry, sometimes shouting and swearing and throwing herself backwards if any effort to help her was made. It took 55 minutes before she could be helped to the toilet. Afterwards we had snacks and cake and watched the second half of the game without incident. A short while after the match had ended, further difficulties arose when Isobel wanted to go to the toilet again; after about ten minutes we decided Keith would drive us home and I helped Isobel up when she was off guard.

When we got home, there were no more problems about being helped to stand up. Isobel watched the video of the stage performance of Summer Holiday that Steve had lent her.
Isobel had chicken curry for dinner followed by ice cream. Isobel went up to bed at about 8pm but watched television until about 10pm.

Friday, 18 September 2009

Isobel woke at 8am and made a leisurely start to the day. Iona came over at about 9.30. Isobel was only just bathed and dressed when June arrived at 10.30. June brought a large chocolate cake, we ate half during her visit. Iona left after tea and cake; June stayed until almost lunchtime. Isobel's speech was fairly good. Elaine 'phoned from Maidstone Hospital and said that Dr Sadler would see Isobel on the 29th. There would not be an MRI scan before the meeting.

After lunch Isobel was very tired and lay on the sofa. Jackie from Scouts called, having only just heard about Isobel's illness, but Isobel said she was too tired to see her (Jackie will probable arrange a post-hospice meeting next week).

Isobel moved back to bed soon after 4pm. She ate her dinner in bed, which is unusual. She had chicken in basil sauce with chips. Iona returned in the early evening and stayed for about an hour. Isobel briefly came downstairs for about three quarters of an hour. Isobel's walking and balance today has been rather better than yesterday. After going upstairs to bed again, Isobel helped to finish off June's chocolate cake at about 10pm. She did not go to sleep until well after 11pm.

Thursday, 17 September 2009

Isobel woke at 8am, but was very tired and slow to start moving.There were no problems breakfasting, bathing and dressing, although it was half ten before we got to the hospice. Her walking and balance were again very poor.

While Isobel was at the hospice, Di Sprowles, who was at school with Isobel, dropped by on the off chance of seeing Isobel. Di is going on holiday for two weeks and will arrange another visit when she gets home. I collected Isobel from the hospice at 3pm, Steve has "kindly" loaned her a video of "Summer Holiday" to watch!!! He says the new version is even worse than the one with Cliff Richards in it. I 'phoned Maidstone Hospital and spoke to Elaine, Dr Sadler is away this week but Elaine has not seen any planning to do with Isobel - she will get Denise (Dr Sadler's secretary) to call with a report of the present position, hopefully tomorrow.

Isobel had chicken casserole for dinner, followed by ice cream. We packed Euan off on his Oktoberfest trip to Germany, Iona drove him to Richard's house where they will all stay before an early morning departure tomorrow. Isobel went to sleep at about 11pm.

Wednesday, 16 September 2009

Isobel slept until 6.30am when the bed was found to be wet, it was quickly remade and Isobel slept on until about 9am. We had nothing planned for the day and the sofa downstairs was still drying so Isobel spent most of the day in bed with Euan and I taking turns to keep her company.

Isobel bathed and breakfasted without problems. She was convinced that we should be taking her to see her mother today, a 'phone call dispelled this illusion. For lunch she had salad Panini made by Euan.

For dinner Isobel had beefburgers, followed by a huge helping of apple pie and ice cream. She went to sleep at about 11pm. Today Isobel's walking and balance has been as bad as it has ever been. She has not fallen, but even a few yards to the toilet has been challenging and she has had to be closely watched in order to avoid problems.

Tuesday, 15 September 2009

Isobel woke at about 8am. She breakfasted, bathed and dressed without any problems, we were at the hospice by 10.20. I did not see Iona during the day as both she and Jon are ill.

I collected Isobel from the hospice at 3pm. She had a good day there. Louisa and Terri from work came round to see Isobel at 4pm bringing cakes and biscuits, They stayed for an hour or so chatting. Louisa said that Isobel seemed better than on her previous visit last week, apart from her balance; it is useful to have these independent views as I am finding it more difficult to judge day to day changes. Isobel's speech was certainly not too bad. The high point of the visit was caused by myself and Euan not supporting Isobel as she went to sit down in the computer room. She choose a springy cantilever chair which I had positioned partly in front of the living room wall so it would not move back and hit the French windows. Isobel fell into the chair with so much force that it flew back, bounced forward off the wall, fell back again hitting the corner of the wall and breaking off some of the plaster, then bouncing sideways and back, just missing the glass of the French windows. It was really spectacular. Isobel had walked fairly steadily to the chair and myself and Euan had relaxed our vigilance. This is a difficulty we have all the time, we want to let Isobel do as much as possible for herself but at any moment she may lose her balance or make a dangerous misjudgment.

After Louisa and Terri had gone, Euan took over looking after his mother while I had a nap - this is forward planning to ensure I am fresh and rested by Friday as Euan will be away from Friday to Tuesday. As she had a large three course lunch at the hospice, Isobel just had pizza for dinner, followed at about 10pm by some of the cakes Louisa had brought. Isobel was asleep by 11pm.

Monday, 14 September 2009

Isobel slept until 7,30am. The bed was slightly wet, the first time for several days. Isobel bathed, breakfasted and dressed without any problems. She was at the hospice shortly after 10am.

I collected Isobel from the hospice at 3pm. During the day Isobel had a fall, but landed on her bottom. I was not too worried by this, no physical harm was done and falls are always a possibility given her poor balance. A few weeks ago she was falling several times a day while at home and we were not always catching her. For several weeks she sported various scratches and bruises on her body, although Isobel said she neither felt them nor knew how she got them. For the past couple of weeks there had been no falls other than onto the bed and sofa. Although this may be partly the result of us watching Isobel more closely, I believe it is also partly the result of Isobel learning not to be so reckless, especially when leaning forwards as this causes her to overbalance. Tracey at the hospice said that Dr Williams had 'phoned and asked for an update on Isobel's performance. I believe this is part of the attempt by Dr Sadler at Maidstione to decide what to do next in view of the conflicting reports that have reached her.

Isobel had leek and bacon flan with boiled potates, peas and sweetcorn for dinner. Afterwards she had ginger pudding, followed by cherries, blackberries, raspberries and blackcurrants with jelly and ice cream. Isobel went up to bed at 10pm but did not fall asleep until after 11pm.

Sunday, 13 September 2009

Isobel slept until 10am, she seemed very fresh afterwards. Iona arrived to collect her car and stayed with her mother for a couple of hours. Euan cancelled a planned visit to Gravesend and none of us did much during the day.

Isobel had Quiche Lorraine with rice and beans for dinner followed by lemon pudding followed by ice cream and jelly. She went upstairs at about 9pm and soon fell asleep. Isobel has been much more relaxed during the last couple of days and has cooperated in her care.

Saturday, 12 September 2009

Isobel slept until 12.12pm, this is an exceptionally long period of sleep. We went round to Keith's by wheelchair to watch the All Blacks:Springboks game he had recorded earlier this morning. We had the usual snacks, cake and beer although Isobel did not join in the beer. we came home just before five.

Dallas dropped in for about half an hour as she had come down from Milton Keynes to Erith today.

Isobel had chicken casserole for dinner followed by ginger pudding. Iona came by for a short time and then I gave her a lift to Dartford. Later Isobel had ice cream and jelly, she went up to bed at about 9pm and watched television for a time before falling asleep. Her walking, balance and language has been about the same as yesterday.

Friday, 11 September 2009

At about 1.30am the bed was found to be slightly wet and was changed. Owing to tiredness I forgot to change Isobel's pants; the inevitable result was a completely soaked bed within a quarter of an hour. Isobel had to sit around for the best part of an hour while another set of bed linen finished drying. Isobel woke briefly at 8am but fell asleep again until 10.45am.

Iona popped in for an hour before returning to school for her after school club.

Helena, who had shared a room in Kings College Hospital with Isobel, called at about half two, within two minutes of Iona leaving. She brought chocolate eclairs which Isobel enjoyed eating. Isobel and Helena had a long chat, although Isobel's speech was not always easy to understand. Helena had just started her nursing training when she was ill at the start of 2007, now she is within a few months of completing it. By coincidence, not only had I taught Helena's sister science but also their father collaborates on astronomical research with Mark Armstrong who Isobel and I used to work with. Last year we spent an enjoyable afternoon at their house in Hartley where they have an observation dome and telescope on the roof. By the time Helena left, Isobel was fairly tired.

Isobel had beef and vegetable hot pot for dinner, followed by lemon pudding. She had a lot of trouble eating the hotpot and a lot of it ended up on her, her clothes and her chair. Usually she can feed herself without too much difficulty but about one meal a week she has real problems. Later Isobel had ice cream. She went up to bed at at about half nine. Although Isobel's walking was unsteady today, it was not quite at its worst. She did however have a lot of trouble getting out of chairs - this has been a trend over the course of the past few months.
This is a late posting of Thursday's blog - thanks to Rhoda for pointing out that I had forgotten Thursday! Isobel slept on the sofa until 4am when a smooth transfer upstairs was made. Isobel had no problems breakfasting, bathing and dressing, and she was at the hospice shortly after 10am. There was a bit of shouting when we arrived, as she did not want to be transported in by wheelchair - but her walking is so poor now that there is no alternative.

I collected Isobel from the hospice at 3pm. Apart from her very unsteady walking, she had a good day. Although she had a three course lunch at the hospice she was hungry when she came home and had some chocolate pudding. Louisa from the school called in for half an hour after work; Isobel enjoyed the conversation but towards the end she tired and her speech became confused.

For dinner Isobel had chicken and pasta. She went up to bed at about 9pm and fell asleep about half an hour later.

Wednesday, 9 September 2009

Having gone to sleep on the sofa about 10pm, Isobel woke up at midnight and insisted on watching television. I went to bed and Euan tried to move her upstairs at about 3am. Eventually between us we convinced her to go to bed shortly before 4am. Isobel slept until 11.40am.

Apart from an argument with Iona at lunchtime, Isobel seemed more relaxed today. Her walking was again a little better and she was having slightly less difficulty getting out of chairs. In the first part of the day her speech was still poor. I had an e-mail from Maidstone Hospital saying they were considering the next scan and would be in touch.

Isobel had chicken and potato slices in vegetable sauce for dinner. The three of us watched the football, Isobel made sensible comments, her speech improved and she was able to work out how much longer the game had to go by looking at the onscreen clock - this has been beyond her for about a year. During half time Isobel had raspberry ripple ice cream and tangerine jelly, after the game she had garlic bread. Isobel fell asleep on the sofa at about 11pm.

Tuesday, 8 September 2009

Today went smoothly, this is very rare. Isobel woke at 7.30am, breakfasted, bathed and dressed by 9.30am. We were at the hospice by 10am.

Dr Sadler's secretary, Denise, 'phoned as the oncology department did not know what had happened with the neurology referral. I e-mailed her a copy of Professor Hawkes' report, which had somehow not reached them; I also explained the background to some of the comments in the report and the effect of the four days when Isobel did not take her medication. The MRI scan will apparently be forthcoming later this month. There seems to be no explanation for her deteriorating symptoms in terms of disease progression. Certainly there is no evidence (either from scans or from increasing periods of sleep) of the tumour attacking the corpus callosum or other deep brain structures which would rapidly produce a very serious problem. I collected Isobel from the hospice at 3pm. She had a good day, including a massage. Steve commented that from their point of view, Isobel did not vary much from day to day apart from her walking and balance - in contrast to the extreme variability we see at home.

Isobel's walking and balance was a little better for most of the day. Her speech was still very confused. Isobel had Chicken Kiev with citrus wedges, brocolli, sprouts, peas and onion rings for dinner, followed by rhubarb crumble. She fell asleep on the living room sofa at about 10pm.

Monday, 7 September 2009

An interesting day today, not a disaster but it seemed to come close to one at times.

It took several hours before Isobel settled down to sleep in the hospital bed, at first she was positioned across it with her feet dangling over the side while she intermittently dozed and complained that she could not use the bed upstairs, but eventually about 2.30am I got her into a comfortable position and she slept through until 8.30 am. When she woke the bed was wet, but this does not cause much of a problem with the hospital bed.

Isobel refused to have breakfast or go to the hospice today and was generally very grumpy; but eventually agreed to bath. Afterwards she dressed and allowed her teeth to be cleaned, then after further discussion agreed to go to the hospice. She arrived at the hospice not long before 11am.

After dropping Isobel off at the hospice I bought the parts for the new upstand pipe in the kitchen for the new washing machine, as the old one was far too short. The new washing machine had been delivered late Friday when Isobel and I were in Norfolk and was missing a few parts mentioned in the installation instructions. I suspected these related only to transit of the machine; this proved to be correct but it took a large number of telephone calls to the retailer, their service agents and eventually the manufacturer to establish this: two of the contact numbers given to me were incorrect and a number of calls were disconnected by automatic routing systems. Iona came round for lunch and confirmed she is resigning from her three jobs at the school. Her position has been made very difficult as the school are refusing any compassionate leave to assist with the care of her mother (who remains on the staff of the school, unpaid). By the time I collected Isobel at 3pm, the washing machine was ready for action and the new upstand pipe had been installed. The machine ran continuously from 3.15pm until 1.40am. Isobel's walking today has been variable, generally poor in the first part of the day but getting noticeably better towards the night. Her speech has not been very good, a number of conversations have ended without us being able to understand what she was talking about, this is of course very frustrating for Isobel.

Isobel had steak pie, mashed potato and beans for dinner followed by rhubarb crumble. As she was not willing to sleep downstairs again, she dozed on the sofa until the upstairs bed was reconstructed well after midnight.

Sunday, 6 September 2009

Isobel slept until half nine this morning. This was better than I managed as after getting Isobel up for the toilet at half three I could not get back to sleep and came downstairs to make myself a cup of coffee at half five. I was still sitting around downstairs when Euan rung on the doorbell art about half six having got a lift back from Gravesend. Isobel's walking was a lot worse than yesterday, although possibly not as bad as it was for much of last week.

Iona came over in the middle of the day, she and Isobel lounged around in bed watching television. Isobel had an unusual tea of ice cream and jelly.

Isobel had fish, chips, onion rings and beans for dinner, followed by chocolate pudding. All went smoothly until about half ten when she got ready to go to bed. She was argumentative about changing her pants and was found to have wet the sofa again. Upstairs she was unable to go to bed as it was discovered she had completely soaked the bed at some stage earlier in the day, presumably when she was with Iona. Luckily the additional layers almost completely protected the mattress, but the volume must have been huge as the mattress protector was soaked for three and a half foot by two foot. It is probable Iona did not check the bed when her mother got out as it had clearly been soaking for hours - usually such problems are detected and tackled at once.

There were the usual objections from Isobel to sleeping in the hospital bed, these went on for about two hours with much swearing and some slapping.

Saturday, 5 September 2009

Isobel had a long night's sleep and did not wake until almost 10am. The improvement to her walking and balance noticed on Friday evening continued throughout Saturday. At times during Saturday her speech was also much better.

After lunch we drove Euan to Gravesend then went to Keith's house by wheelchair to watch a recording of the Australia:South Africa game. Isobel had snacks and cake but did not join us in drinking beer. On the way home we were intecepted by Iona who had come looking for us after finding the house empty, she drove Isobel while I wheeled the empty wheelchair.

We had curry for dinner, Iona cooked it. We split a bottle of "Bretwalda Ale" between us, especially appropriate for Iona and Isobel who are descended from Saxon Bretwalda's (it is an old title, broadly meaning "Britain Ruler", that the early Anglo Saxons gave to their leading king, despite the fact that they did not in any sense rule all Britain). Afterwards Iona went home after packing us off to a very early bed at 10pm. Isobel's condition has been better today than for several weeks, she also seems happier.

Friday, 4 September 2009

Isobel had a good and long nights sleep, she did not wake until well after 9am. While she breakfasted I fitted the modified bedroom door, which delayed our departure for Norfolk.

The journey to Potter Heigham was protracted by three hold ups, two of them on the Norwich Ring Road added an hour to the journey. This is the first time Isobel has seen her mother and Jess for many months. We only stayed for about three hours, Isobel's walking and balance was poor again, but her speech was a little better. We left a few minutes before 7pm and had a quick trip home. The new washing machine has been delivered.

Isobel's walking and balance was suddenly improved when we reached home - there is no discernible pattern to these changes. She had a quick dinner of sausages and baked beans, but did not go to bed until after 11pm.
Thursday - a very late posting.
Apart from starting with a wet sofa, a quiet night. No problem with preparations for the hospice. Walking, balance and speech again poor.

Isobel had a good but quiet day at the hospice. I checked that no MRI scan had yet been arranged at Maidstone Hospital and afterwards spoke to Elaine, Dr Sadler's nurse, who will make sure one is set up for this month. I had a very long 'phone conversation with the pension section at ATL (Isobel's union); the situation is very complex and they will put some figures together for us so we can decide how to proceed - at the moment Isobel remains on unpaid sick leave. Iona is having some problems with the school who are taking a very hard line regarding her mother's illness.

Euan cooked a special chilli con carne for dinner. Isobel went to bed about 10pm.

Wednesday, 2 September 2009

Interruptions continued throughout the night, Isobel finally settled down to solid sleep at about 6am. She woke after 9am, the bed was soaked again, although she had been to the toilet about eight times during the night. Balance and walking were again poor today. I finally got the new washing machine order sorted out but delivery has now slipped to Friday.

Iona came over in the morning to help with sorting the remaining stuff in the living room. When she left she took a load of dirty washing with her. Dallas and Mike came to see Isobel and talked about their cruise round the Norwegian fjords. They brought a delicious home-made coffee and pecan cake, we ate most of it, Isobel had two slices. Dallas and Mike left just before seven. Isobel had tagliatelli bolognese for dinner, having previously had a third slice of Dallas and Mike's cake.

Isobel was very tired in the evening and fell asleep on the sofa. I drove over to Iona's and collected all the clean, damp washing as Iona's tumble drier is inefficient. Isobel was still sleeping on the sofa, when she wakes she can move back into our bedroom, a sixth layer having been added to the protection above the mattress.

Tuesday, 1 September 2009

Iona called just before seven to collect her car, she went home for a long sleep after her holidays. Isobel was very tired this morning. She had wet the hospital bed during the night but this is much less of a problem than other beds. There were no undue problems in getting her ready for the hospice, but her balance was worse than ever. There was a little bit of a scene at the hospice when Isobel objected loudly to using the wheelchair, but a passing volunteer helped to convince her it was unavoidable.

I caught up on housekeeping tasks while Isobel was at the hospice. She had a good day at the hospice apart from the balance and walking problems. Although she had a three course lunch at the hospice she was hungry when she got home and had some cheesecake and biscuits. She settled down on the sofa and watched television.

For dinner Isobel had a very large helping of mince stew with carrots, onions, peppers, sweetcorn and peas with rice. Iona and Jon dropped in for a few minutes, Iona had brought presents from Corfu. She took away with her a black sack of washing. In the evening I had an e-mail from the vendor of the new washing machine to say that Alliance and Leicester had blocked payment, this was rather odd as all steps towards the purchase had gone smoothly, including the additional security check added a year or so ago. I phoned the bank's contact number to find that human beings had been replaced by an automated system requiring a different pin number to the one used for the purchase with my debit card. As this pin number had the same number of digits as my on-line access number I assumed that this would work. No such luck, but the bank offered to completely "suspend the account to avoid further difficulties"!!! I eventually found out that the bank did want the password, but had recently reset it themselves. Logging on with the reset password only brought a request to reset it on-line to another combination of my choice. The bank did not like my first choice, but eventually an acceptable one was found. I then phoned the bank again, the password worked, I was put through to the correct section, but just got a recorded message saying the line had closed for the night.

Isobel was very unhappy about sleeping in the hospital bed, there was some slapping again, this time Euan was the recipient. Eventually she settled down to sleep at about 11pm. Although Isobel said that she was very tired, she got out of bed every half hour or so for the next couple of hours, she was very confused and did not seem to know what she was doing.