Thursday, 16th May, 2024 [Day 1522]

We always knew that today was going to be quite a fraught day today, dominated by the hospital appointment at the local hospital to investigate the oedema in Mg’s left leg. Once we had got Meg up up and breakfasted, the ambulance actually turned up about three quarters of an hour early but the crew were very pleasant and got Meg loaded onto the Sara Stedy and thence to their own specialist ambulance stretcher. Having got Meg loaded in, we then went to a care home to pick up another patient. Then we heard a tremendous kerfuffle because the ambulance crew refused to load a wheelchair that was not certificated as crash tested whereas the care home thought the ambulance would be providing a crash certificated wheelchair. All kinds of negotiations and discussions were going on behind our backs which we could not observe but only hear, the upshot being that the (demented) old lady could not be transported until the home provided the correct wheel chair (a subsequent ambulance crew told us that homes did this to cut costs and to save money) So we arrived at the hospital and Meg got loaded quite quickly onto the treatment couch using a combination of slide boards and slide sheets. The middle aged but vastly experienced technician allowed me to view as much of the data as I needed as it was UltraSound imaging with no radiation risk. I could tell how experienced he was because he immediately started scanning Meg’s groin and clearly identified a DVT (deep vein thrombosis) almost within a minute of starting. He explained that as the DVT had travelled up the leg to the groin there was no point in starting to scan any lower but he did (reassuringly) scan Meg’s abdomen and no clot was showing up there. He explained that this condition was fairly easily treated in his opinion and he was kindness personified, as was the nurse who assisted. Then we were escorted to a waiting area at about 12.00 midday or just before, awaiting the specialised transport back home. Suspecting that we might have a long wait in front of us, I had taken the precaution of taking along a flask of coffee and some crunchy biscuits and this helped to make the initial part of the wait a bit more bearable. But after an hour and half Meg was becoming understandably restless and the nurse who had attended us came along to see us to see what she could do to help. She phoned up the ambulance agency which indicated that we might only have to wait for a further 40 minutes but this turned out to be an hour. But a very kindly radiographer who had seen us waiting for a very long time went to get us some sandwiches (which I must say were delicious) and a cup of tea for myself and he even brought along some tea for Meg in a little silver teapot so that I could pour the contents into Meg’s feeding cup. I must say that the act of feeding ourselves with some sandwiches plus the conversation that we had with the radiographer helped to pass some of the time. I suspect that as it was 1.00am we were in a bit of a lull between the morning and the afternoon appointments. Bus this act of kindness was much appreciated but the entire wait for the transport to come home was two and a half hours. In the ambulance, we picked up another patient who had to be delivered to a care home in an obscure part of Redditch unknown to us and then we made our way home through pouring rain and the most horrendous traffic jams not getting home until after 4.00pm. The ambulance crew were very good getting Meg onto her chair via the Sara Stedy (although in theory, they had not been trained how to use this) but fortunately did not completely follow the rule book. As we coming in the house, the care agency manager phoned with a rater obscure message that I did not quite understand that the OT wanted to assess Meg whilst she was in bed. Of course, what I suspected would happen did happen – the OT person tried to contact us although I had informed the ReAblement team that Meg had a hospital visit booked for the day. Because of the problems of mobile phones deep in the heart of a hospital and surrounded by X-ray and other scanning machines, this call did not get through to me nor did the subsequent message. So when I returned home, I had to phone the ReAblement team to confirm that an OT would be coming to assess us tomorrow but they could not give me a time. I got a message, though, from the senior partner at the GP practice informing me of the result that the radiologist and I had seen with our own eyes of the DVT from which Meg is suffering and for which she is already taking the medication.

An unexpected bonus has come our way after this little hospital episode. The friendly radiologist who had gone out of his way to supply us with sandwiches extracted the slide sheets upon which Meg had been lying when she was eventually transferred to the ambulance stretcher, offering them to us and explaining that they would only be thrown away otherwise. So we accepted these with alacrity and once we got Meg inside the house realised that we had acquired both a hospital sheet (that had been used to get Meg into the right position) and also a hospital blanket. We asked the ambulance crew what to do with these items and they just told us to keep them. In truth, both of these are items for which we can we can find a ready use. So we are spending the rest of the afternoon in a contemplative state listening to ClassicFM before we catch up on the evening news and then get ourselves ready for bed at about 7.30pm

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Wednesday, 15th May, 2024 [Day 1521]

I try to keep optimistic but the day has not got off to the best of starts this morning and things are certainly not looking any better. The first thing I discovered by reading my emails in the middle of the night is that the planned visit of the social worker is not now going to take place. The social worker’s email indicated that Meg was still under the aegis of the NHS ReAblement team and therefore not the responsibility of Worcs. County Council. Although I thought they had handed Meg back to the care agency, this might only have been on an agency basis and Meg had not been formerly handed back to Worcs CC. So the planned review visit for today has been cancelled to be at some unscheduled time in the future. The next misfortune was that the oedema in Meg’s leg had now spread up all the way up one leg as far as her groin which meant that one leg was all puffy and swollen. This led to a phone call to the doctor which is evidently these days only a request for a telephone consultation. Her information to me was that this is not an uncommon syndrome but when it occurred, the course of actions was blood thinners on the one hand (which Meg is now on, in case of a clot) followed by an UltraSound scan which is due to take place in one of the local hospitals tomorrow. If the Doppler scan reveals a clot then the blood thinners continue but otherwise other strategies are adopted to cope with the oedema. The carers had a real struggle with Meg this morning and we have to attempt to wash, toilet and dress Meg ‘in situ’ on the bed and then transfer her somehow onto her transit chair to get her downstairs. The carers had evidently submitted adverse reports back to their manager who was urgently trying to push OT for a hoist to protect the health of his own workers. I am not sure but I believe that an instruction might have been issued that Meg has to be ‘card for’ in bed tomorrow and, perhaps, might have to remain there until a hoist is procured – which could possibly take weeks. Taking the three of us, we somehow got Meg downstairs and into her favourite armchair but it is taking three carers altogether to do this as Meg is such a dead weight and cannot even stand, even if supported by a frame. I am trying to think of imaginative solutions to this problem of getting Meg out of bed but if there were a simple solution, I would have thought of it by now. This morning, there was no question of taking Meg anywhere but we had a call from the Eucharistic minister which was a bit of welcome relief (and to be honest I had forgotten about with the traumas of the morning) Then the District Nurse called around and assessed Meg’s leg and came with some helpful creams but her hands are a little tied until we get the results of the investigation in the hospital tomorrow (and I am hopeful that they are able to tell us on the spot) Then the carers called around in the late morning and the struggles that we had to get onto the Sara Stedy had to be seen to be believed. One carer and myself were trying to hold Meg upright even though she kept dropping whilst the third was attending to Meg’s tilting. At the end of our session, all three of us (but not Meg) were absolutely exhausted and I shudder to think what reports are being fed back to the office. At one stage, one of the carers was going to phone the office to say that with Meg being unable to stand, any care was impossible but after a rest and Meg collaborating a little more, we managed to get the Sara Stedy into operation and Meg just about seen to but it was a massive struggle. In the late morning, I get a call from an OT person evidently responding to urgent calls from the care agency who feel they cannot cope. The OT was trying to elicit information on the phone when what is needed is an actual visit and an assessment on the spot and then a range of options discussed. One thing that may have happen is that part of our lounge to be cleared and formed into a sort of hospital area with a bed and a hoist. What I am unclear about at the moment is whether the assumption is that I get a bed downstairs and set it up (which is going to be a massive struggle) or whether the OT service will extend as far as a hospital bed and in which case, who is responsible for the payment for this? So the next few days are going to be incredibly uncertain. I am rather dreading the two carers calling around late this afternoon as I do not look forward to a repeat of this morning’s experience. Of course, Sod’s Law is in operation today and Meg seems quite perky and totally disinclined to sleep which I am sure that she needs but there we are. I managed to get a miniscule amount of food into her but her appetite is so suppressed that I doubt that I got more than ten fork bulls of dinner inside her. But she claims not to be hungry or indeed thirsty.

There are not many Brexit related stories around these days but we are still impacted by it. Sky News reports that an IT systems failures at the UK border have caused major delays to fresh food shipments from the EU, with importers complaining of chaos at the busiest border post as lorries were delayed by more than 24 hours. A key software system crashed at the weekend, leaving shipments of meat, cheese, fresh food and flowers being held for long periods as paperwork was processed by hand.The system failure comes just two weeks after the introduction of new processes the government promised would be ‘world-leading’. It also looks as though the Northern Ireland agreement (‘The Windsor Agreement’) may threaten the deportation of asylum seekers to Rwanda – those who are smart, may now try to get themselves to Northern Ireland where attempts to deport them will fall foul of the Courts there. On a more personal level, it looks as though some of the pharmaceutical supplies that were prescribed for Meg (a standard penicillin) were out of stock because of Brexit related disruptions to European supply chains.

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Tuesday, 14th May, 2024 [Day 1520]

Every day seems to follow a different pattern these days, so I have to take one day at a time. The carers were not due to arrive until 8.40 but knowing the Bromsgrove traffic, I was not surprised when they were 15 minutes late. Meg was so sleepy this morning which is a pattern she has exhibited for the last few days so the carers took the decision to wash and to dress her ‘in situ’ on the bed before getting her up and then bringing her downstairs. After breakfast, I knew that I would have to get out to the pharmacy to collect the blood thinning tablets that the doctor had prescribed for Meg yesterday evening. Some time later, I got a call from the local hospital inviting me round for a sonar scan of Meg’s foot some day later on today if that were possible. I explained how immobile Meg was so the hospital declared that I needed to contact my local GP to organise some transport to get Meg to the hospital on Thursday (tomorrow morning being out of the question because the social worker is due to call around tomorrow morning) When I got onto the GP practice, I was informed that they did not organise hospital transport but gave me the telephone number of another agencified service to provide transport to the hospital on Thursday next. This involved hunting out NHS numbers and the like to check eligibility and the like and then learning of Meg’s lack of mobility. they were going to organise at least two personnel so that Meg can be transported by stretcher. Despite my initial irritation, at least I managed to get this service in place. No sooner was this organised but a district nurse called round to take further blood samples from Meg. I explained about the swollen and puffy nature of the oedema in Meg’s left ankle and foot (which might have been a tad better than late last night) and I was glad I did. The nurse photographed Meg’s leg and was going to organise some special cream as well as a special bandage in order to make sure that the condition of meg’s legs did not worsen. Both the nurse and myself realised the importance of ‘a stitch in time saves nine’ so the district nurse was going to send around a colleagues the next day i.e. tomorrow to make sure that Meg’s leg was well dressed and would not deteriorate further. Then I managed to shoot off into town, my son holding the fort whilst I was away, so that I managed to collect Meg’s prescription as well as a copy of the newspaper from Waitrose (where my friends happened to be gathered so I quickly gave them an update of what was happening to us)

Tuesday is generally my Pilates day but I had pre-determined that I would forgo this for yet another week but I knew that the carer was scheduled to call round for a sitting service in about 40 minutes time. I was anxious that Meg get some fresh air and a little trip out so as Meg was already located in her ‘trips out’ wheelchair, I wheeled out as far as the Kidderminster Road and then down into the new little estate which had been built on land which previously had been an orchard immediately adjacent to our property. In the last few days, our Italian friend was telling me about a lady whose acquaintance she had just made who lived on this little estate and she gave me the house number. So whilst I was taking Meg out, I knocked on the lady’s door and explained who I was and I lived in the house that she could probably discern through the foliage of the trees bordering our property. The lady’s husband came to the door and we vaguely recognised each other as people do when they have passed each other in the street. Having established who we were and why we were knocking on her door, I indicated that if and her husband were at a loose end, she could always pop round for an afternoon cup of tea (I gathered from our Italian friend that this lady was feeling a little isolated in this newish house) I also told her and her husband about the little gatherings that we have in Waitrose on a Tuesday and a Saturday morning so I am hopeful that these neighbours (which is what they essentially are) will take up our offer and pop around some time. Then the carer turned up and we devised a plan for her stay as I no longer intended to attend my Pilates class. We made Meg comfortable and then I cooked a simple lunch quite quickly of fish cakes and microwaved vegetables and then the carer helped to feed Meg her lunch whilst I was eating mine. Then the carer very kindly helped me to do the washing up and we settled Meg off, hopefully for an afternoon sleep. On occasions like this, I take the carers into the kitchen and explain what I think is going on medically with Meg so that they are fully briefed but it is fair to say that they are able to confirm the deterioration that they have observed in Meg’s condition over the last fortnight.

There is a very perceptive and well-informed article in todays ‘Guardian‘ that provides the following narrative. When you set out to explore Donald Trump’s personal life and business practices, you don’t expect to meet any paragons of virtue. The writer argues thus:sleazy media figures who buy and ‘kill’ damaging stories? Yes. An adult film actor ready to tell all to make a buck? Certainly. A parade of spokes people and staffers who compromised their own integrity during his presidential administration? No doubt. But the writer then goes on to make the point that a demonstration of this low-life is not the same as a determination of absolute criminal behaviour. The actual charge is that Trump influenced his early election by concealing payments made to the porn star as ‘business expenses’ and the prosecution has to prove, via the star witness of Michael Cohen, Trump’s one time lawyer and ‘Mr Fix-it’, that this was Trump’s firm intention all along. It only takes one juror to be unconvinced that Trump’s activities whilst being unsavoury were actually criminal for the prosecution to fail. In other words, there is everything to play for and the end result of this court case still hangs in the balance.

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Monday, 13th May, 2024 [Day 1519]

Well, it really feels as though the weather is on the change today. Yesterday afternoon, the sun was shining fairly brightly and Meg was dozing so I took the opportunity to dash out and cut the front lawns in a series of tranches as I normally do so that Meg is not left too long unattended. But I could feel the weather changing even as I was mowing and therefore I was heartily glad to get this weekly job done before a deluge started. But the threatened downpour did not arrive and we had a slight shower of rain whilst today is cloudy – and threatening. Two things have happened recently which require more attention. The first of these is that one of the wheels on the transit chair that we use to transport Meg from stairlift to bedside upstairs has somehow got irreversibly jammed and a few hefty blows with a hammer did not resolve the issue. So I needed to phone the OT service to report the issue and indeed, later in the day, I did get a message from them that they would try and deliver another chair tomorrow, if possible. The second issue was a medical one in that the carer and myself notices that Meg’s left ankle was quite puffy with evident fluid retention so I needed to get this reported to the doctor. This necessitated filling in an online form to request some doctor’s advice from the surgery and I received a text back saying that i would receive a phone call from a doctor some time before 6.30 this afternoon. In the event, one doctor did phone at about 3.00pm and evidently I had to go all through Meg’s history with someone who only had Meg’s notes in front of her. She did request that I bring Meg down to the surgery where I had to suppress an evident snort of indignation indicating that as it took the combined strength of two carers into a more or less standing position to get onto the Sara Stedy, coming down to the surgery was hardly a viable option. So, rather reluctantly (I sensed) the doctor indicated that they would try to put in a house call in the late afternoon or early evening but I am relieved that these symptoms are receiving some attention.

This morning, Meg having been loaded into her ‘going out’ wheelchair we went down the hill to Waitrose where I intended to buy some ice cream and some smoothies to help to get some fluid into Meg. I was dismayed, though, once we got inside the store to find all of the ice cream section completely empty which seemed to be Sod’s Law in operation as that was one of the purposes of going down the hill this morning. So I had a word with one of the staff I know well and they told me that their ice cream freezer had packed up (on the hottest day of the year so far) but they had some ice cream in their storeroom bridges upstairs. So I was delighted to get some ice cream which Meg enjoys a lot, together with two bottles of exotic sounding smoothies. So then we made for the park and sat on one of the lower benches overlooking the lake before we started off up the hill striking out for home. Half way home, we bumped into our Italian friend briefly and then got home in plenty of time for the late morning call of the carers. After this was completed, I started to think about lunch which I do in a slightly different way these days. I tend to cook slightly more than enough for one person and then I load up my plate and eat my dinner on my own but only consuming about one half of it. I then heat up the remainder in the microwave and feed it to Meg in fairly small fork fulls which is all she seems able to manage these days. Later on this afternoon, it is possible that I will get a call from an Admiral nurse (specialist in Meg’s condition), a call from the doctor and a late afternoon call from the carers. In the meantime, I have to concentrate upon getting some more fluid into Meg as the doctor is again threatening a hospital stay which I am anxious to avoid.

The Donald Trump road show carries on today. According to the few snatched accounts that I have come across today, it looks as though Trump has been sounding off today with his usual vituperative rhetoric and later today, Michael Cohen who was Mr. Trump’s lawyer who helped to organise the payment of hush money to the porn star, Story Daniels, is due to take the stand later on today. Michael Cohen is the prosecutions star witness and his evidence will be crucial – and damming. On the other hand, he comes with considerable baggage and Donald Trump’s lawyers will argue that as a proven liar, Cohen was sentenced to prison in December 2018 after pleading guilty to campaign finance charges and lying to Congress, among other crimes. In all, he spent about 13 1/2 months behind prison walls and a year and a half in home confinement. His time was further reduced through good behaviour. So the Trump defence will certainly be that as a witness Michael Cohen is so unreliable that every bit of testimony he gives needs to be disregarded. So the important question at this point is how Cohen responds to cross examination and the impact this has on his testimony, and his responses under cross examination, hold sway with the jury. No doubt, some of the juicier bits will be reported on Sky News later on today.

Some interesting domestic political news is emerging this afternoon. It seems that the law allowing asylum seekers to be sent to Rwanda has been disapplied by court in Northern Ireland. The reasoning of the court that this legislation breaks some of the fundamental principles which underlie the Good Friday agreement, which brought peace to Northern Ireland. The government is going to appeal this ruling but already there is an indication that there are legal rocks ahead for the Government’s Rwanda legislation. Tomorrow morning, I am also going to see if there any are more interesting developments in the Post Office enquiry, which is proceeding apace. It is not often that you see people actually held to account in the way that the Court of Enquiry does but at times it can make for absolutely fascinating TV when one wonders what prevarication, absence of memory or denial is going to emerge next from the lips of the witnesses.

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Sunday, 12th May, 2024 [Day 1518]

Today has been a really messed up day, what with one thing or another. Why I bothered to watch the Eurovision song contest last night, I do not know but with an entry like the UK’s (a weedy voice accompanied by semi clad males doing indescribable things apparently upside down using a backdrop that looked like an uncleaned men’s toilet) is it any wonder that the ‘professional’ jury gave it ‘nul points’ The winning entry from Switzerland was somewhat better but not really memorable – all best quickly forgotten about. Meg had a rather disturbed night which did not help and then the carers arrived at 7.00am instead of the usual 8.30am so we did not have time to properly wake up. Although we are given a schedule a week in advance, the actual schedule of visits changes on a daily and sometimes even an hourly basis so the only way of knowing what the next visit is going to be is for the carers to consult their own app which does detail both the carers and the time of arrival. I was a bit dismayed that this was going to be at 11.05 this morning which rather messed up what I intended to do. We watched one half of the Politics programmes on a Sunday morning and I then pushed Meg down the hill, stopping for a brief chat with our Italian friend down the road who was desperately trying to get some potting plants in before the threatened rains started. Then we collected our Sunday newspaper from Waitrose and then made our way to the park where we sat overlooking the lake in a haunt that had been a favourite one of ours in the early days of COVID. Meg had a drink of a smoothie juice I had taken with us and I had also bought along some crunchie oatmeal type bars and this provided us with a bit of sustenance before we started on the journey back. We got delayed a little because a friend I had phoned the other day down the road was phoning to enquire after Meg and I was able to tell her that now she had some more powerful antibiotics inside her. Then we bumped into some of the relatives of Clive, the octogenarian trumpeter who attended our 50th wedding anniversary celebrations but who died at the start of the COVID pandemic four years ago now practically to the day. As we suspected, Clive was an early by-casualty of COVID because the chemotherapy he was receiving to keep his leukaemia at bay ceased and hence he succumbed as soon as this medication was withdrawn. So we got home five minutes before the allotted time to find both the carer and Miggles, our adopted cat, waiting patiently for us. The carers had hardly anything to do for Meg just ensuring she was comfortable and then transferring her via the Sara Stedy from the wheelchair to her own leather armchair. But then we were dismayed again as the 3.00pm afternoon call had now been rescheduled to 1.20 This has really messed up our arrangements and mealtimes as, in an ideal world, Meg and I would have watched a bit of TV, Meg would have had lunch followed by a nap and then the carers would make their afternoon call. As it stands, Meg is fast asleep at the moment and I am loathe to wake her. I may just cook the dinner at the ‘normal’ time, wait until Meg wakes up and the carers have made their afternoon call an hour and 40 minutes early and then ‘play it by ear’ I like to be fairly organised and to have, if not a regimented routine at least a predictable one but when the carers schedules are all over the place like this not fitting in with biological activities like eating and sleeping, then I finding this somewhat difficult to cope with.

Today, we come to the time when we have a beef joint. Meg and I have cut down on our consumption of red meat these days but we do tend to have a beef joint about once a month. I cook it in the slow cooker for about 4 hours and then once cooked, the already small joint is divided into half and the one half gets frozen. I then add slices of the meat to a rich onion gravy, made a little bit thicker with some powdered potato and made to look a deeper colour by the addition of a few drops from my bottle of (gravy) browning. Today, the meal times are so messed up that I am cooking the meal according to a normal timetable and then I will plate it up and be ready to heat it up in the microwave when the time is more propitious.

I have just read the weather forecast and learned that a number of storms are about to sweep across much of the UK this afternoon. This has all come as a bit of a shock because earlier on today, we were getting the news that today might be warmer than yesterday and we hod expect some rain to follow in the next few days. But thunderstorms of this intensity in mid May are not unexpected. I vividly remember one which I can actually date i.e. 11th May, 1968. I can be precise about the date because it was my birthday, a date which I shared with a flatmate who came from Sri Lanka (then, of course, Ceylon) I can remember myself and my flatmate standing in front of our living room window which fronted onto the Wilmslow Road in Manchester. The rain was of such a ferocity that absolutely all of the traffic was forced to a halt and my flatmate and I watched as the rain hit the ground so hard that it bounced some 12″-15″ above the surface of the road. Of course, it could not rain at this intensity for very long but, nonetheless, it was a very vivid scene that is etched in my memory. Some people feel absolutely wonderful in a thunderstorm and there is some scientific evidence that the negative ionisation creates a euphoric mood in many people (whilst the counterpart is the positive ionisation you get in very hot and sultry weather than can make one feel out of sorts) So we will have to wait and see what we get this afternoon – I wish, though, that it would arrive a day later so that I could get the lawns mowed before the rain strikes.

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Saturday, 11th May, 2024 [Day 1517]

An interesting day so far but first we need to catch up on the events of yesterday. In the afternoon, there were meant to be two carers turning up at 3.15 but after a phone call to the agency, they did turn up after a delay of an hour and three quarters. The individual carers are generally helpful and supportive but the information system behind them is practically non existent. They are not allowed to contact their clients directly but are meant to report any delays back to the office who is then meant to inform the clients of any delays. But by common consent, the carers report delays back to the office who seem never to contact the client subsequently but express what I think is a feigned surprise when you report that nobody has turned up. But the doctors at the surgery are evidently a bit worried about Meg because one of them phoned up this afternoon and was appalled that the medication, prescribed a week ago had not been delivered because it was ‘out of stock’ This was not an exotic drug but a a fairly standard penicillin so the young doctor was going to raise ‘issues of concern’ with the pharmacy and was then so concerned himself that he was going to prescribe a much stronger antibiotic than originally planned. He was then going to get it the the pharmacy and pick ip up personally before bringing it around in the late afternoon. The doctor was pretty concerned about some inflammation markers in Meg’s blood analyses which might have indicated an infection and that was several days ago. He was almost inclined to recommend that Meg be admitted to hospital where perhaps some IV antibiotics would get quicker into her system. I must say, I very strongly resisted this suggestion after our recent hospital experiences but he went along with my wishes that the antibiotics he was bringing along this afternoon should be allowed to work. Meg is very sleepy in the mornings and has been for a day or so now but whether this is a result of the disease process or the effects of the inflammation, it is hard to say. The doctor said he was going to bring along their updated DNR form which, as the doctor had made two unscheduled phone calls in two days and then suggested a DNR form, made me wonder if they had secret suspicions to which I was not a party. In a bit of a panic, I emailed an Admiral nurse and got a very calming and soothing Admiral nurse who called me back and gave me some words of reassurance and comfort, of which I was certainly in need.

Now we come to this morning. Meg was her usual sleepy self when the carers called but as we have seen this pattern for the last couple of days, we are leaning to cope with this scenario. The two carers (and myself) helped to get Meg up, washed and dressed but she is so floppy and a dead weight, it actually takes three of us on occasions to do what is required, two of us holding her up and the third washing or what have you. But we did get Meg downstairs and a smidgeon of breakfast inside her. When I last shopping, I bought myself one of those exotic drinks (I think it was guava, pineapple and peach) but I gave this to Meg and I was relieved to see that she was drinking it fairly readily, as I suspected that with the heat and other things, she is quite dehydrated. So Meg having been put into the transit wheelchair, we were just preparing to go down to Waitrose when the parishioner called around from church with a card for me and a box of chocolates. Then we progressed down the hill and although there are one or two uphill sections, it is mainly a downhill run and therefore quite easy. The minute we got inside the store, I got a big hug from one of the Asian partners I have known for years and then we progressed to our usual table. There prepared for us was the chocolate cake that had been put on one side for me yesterday together with four plates and a knife. Whilst I was in the store and thinking about breakfast experiences, I bought Meg some more of the specialised fruit juices and then went to order my coffee and pay for this and the cake. To my considerable surprise, the store insisted that I have the coffee and the huge birthday cake ‘on the house’ and so with two of my friends we tucked in with gusto. Another of one our friends was very disappointed not to be there but she had a very hard day yesterday and may have experienced one or two falls – anyway, she did not feel well enough to come round today but there will be plenty of cake left for nest Tuesday when, no doubt, I shall see her again. Later on this afternoon, my son and daughter-in-law are due to come around so the various cards and prezzies that I have received in the last day or so can wait until we have a more communal opening ceremony this afternoon.

There is a mass of sunspot activity today today and for the next day or so. Apparently the ‘Aurora borealis’ normally seen only in the Arctic regions was seen in many parts of the UK last night. So given that I have never seen this before, I am minded once Meg is fast asleep and to pop out pretty late tonight, probably after the Eurovision Song contest is completed, to see if I manage to see anything at all from our back garden. Politics is intruding massively into the Eurovision contest this year with many protests against the Israelis from being part of the competition and this is not really a surprise. This afternoon my son and daughter-in-law called around so I had a very happy afternoon opening my cards, presents and boxes of chocolates. In the late afternoon I received a FaceTime called from my sister and niece so this helped to round off a really pleasant and memorable day.

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Friday, 10th May, 2024 [Day 1516]

At last, we are getting a taste of summer as the temperature gauge rises and I look forward to a day without visitors as such but nonetheless one of which I hope we can make the best. This morning as we were waiting for the carers, Meg seemed particularly sleepy as she was yesterday but whether this is transient or a sign of a deeper malaise I cannot say. We had two of our usual carers this morning who are always cheerful and pleasant to be with and they jollied Meg along and got her ready to face the day. I had the carers place Meg into the wheelchair we have been holding in reserve (although we did lend it out for a while) and I was happy that we would push Meg down to Waitrose in it, the mainly downhill journey being generally quite easy. Within Waitrose, we did not see any of our usual quite close friends but have a chat with a friend of a friend, as it were. There is also a very friendly young assistant (partner in the Waitrose terminology) who knows us well so between us we surveyed the range of cakes that they had in stock. Tomorrow is the store’s seventh birthday as well as being my own. I would like to claim that I am the store’s oldest customer but have to admit am only the second oldest customer as, on the opening day seven years ago, I got edged into second place by a rather pushy young woman. One of our acquaintances in the store today was also present on the opening day and she told us an amusing story. She had received particularly good service with her drinks and comestibles served to her by a very pleasant and obliging young man. She took him on one side and asked him if she could be introduced to the young man’s manager so that she commend his courteous attention throughout the morning. But she got a response that she was not expecting as the ‘young’ man informed her that he actually was the manager. A bunch of really lovely roses was pushed (gratis) into our hands by one of the long serving staff and then we made a few purchases before eventually starting the journey back home. On the way back, we espied one of our friends who we have not seen for a week or so busy in her garden and commiserated with her over the loss of a string of mature conifers that had been planted around the boundary. It transpired that the roots of these trees might have extended so far they threatened some subsidence in the house itself, so they had to go. I imagined that she would be heartbroken but she told me that she had never really like them from the day they moved into the property and was actually glad to see them go. Her husband was heartbroken, however, which I could well understand being a ‘tree’ man myself. Several minutes into our conversation we were joined by another neighbour who we both know well. This gentleman limped into our presence with a happy support above and below the knee on one leg and he really explained that his gammy knee needed immediate replacement but there was no way it was going to get done with the NHS in its present plight. So he had provided with some heavy strapping and, in effect, learn to live with it or undergo an operation privately where I think the figure of £15,000 might have been mentioned. We were also told another appalling story by the same gentleman who had experienced pains in his chest on night. He was taken to one of the local hospitals who then sent him on to another who then sent him onto a third. Eventually, though, the bed was needed by somebody else so a taxi was summoned to take him at 3.00am in the morning. All of these horror stories just add to the feeling that the whole of our social fabric is crumbling around us. To make matters worse, our two friends mentioned ‘the boat people’ and were quick to make a connection (encouraged by some politicians) between the arrival of economic migrants and/or asylum seekers and the hollowed out state of our public services. We made our excuses and started back up the hill not wanting to get involved in political arguments with friends.

We had only been home for about two minutes when one of the carers that we had in the morning came round for her scheduled, late morning visit. There should have been two carers but the agency had asked me if I could lend a hand as they having staffing/scheduling difficulties. As always I was happy to oblige but Sod’s law took over in that right on the middle of a manoeuvre getting Meg onto the Sara Stedy contraption, one of the doctors from the local practice phoned up (something tells me that something is being flagged up as requiring attention) Like the doctor yesterday, he was appalled that the prescribed antibiotic were ‘out of stock’ because it is quite possible that a slight infection of a few days ago might now be raging for absence of medication. So he was going to prescribe some much stronger antibiotics (about which I am privately a bit worried about the sequelae) and he was going to try to get them into the surgery and to bring them along himself later in the afternoon or early evening. He also started to review some of Meg’s blood results that are just getting onto the system and was evidently worried that some of the inflammation markers were high and was opining that Meg might need a hospital visit for some more detailed blood analysis and perhaps drip-feed antibiotics. I strongly resisted this suggestion that Meg visit hospital after our last visit when Meg was declared medically fit within the day and then it took eight days to get her out of the system ago. The doctor started to mention ‘Advance Directives’ and ‘DNR’ forms which has made me wonder whether the doctors in the practice have a lot of worries about Meg about which they are not being completely frank. At the moment, Meg is in a fairly deep post-prandial sleep which may, or may not, be a good thing and in a few minutes time we are expecting another of the scheduled visits that Meg is now receiving in the middle of the afternoon and a ‘double carer’ call at that as the physio had recommended that Meg’s body strength was such that it might take two carers to get her using the Sara Stedy rather than just one. I must admit I am trying to stay positive at the moment but some waves of pessimism are starting to sweep over me, I must be frank.

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Thursday, 9th May, 2024 [Day 1515]

What a very strange day it has turned out to be today and several more hours to go as well. The carers were detailed to show up at 8.00am but by 9.00am nobody had turned up, so an urgent call was made to the care agency to ascertain what might have happened. The care team when they arrived had experienced an emergency in their previous call when they discovered the old lady for whom they were caring on the floor. An ambulance was called for but it took an hour to arrive and hence the massive delay in getting to us. In theory, the care workers should inform their management about delays who should then inform the clients down the line of any delays but the care workers tell us that this communication process never occurs. One would have thought that this was totally unproductive time waiting for the carers but we made the best of a bad job. Meg was pretty sleepy this morning and so slept on quite soundly until the carers themselves actually did arrive. For my part, I busied myself with a much needed cleaning job. We have a fan controlled ventilator in our en-suite bathroom and although my domestic help and I give it a good vacuuming every so often, it appears that spiders like to live in the grooves and eventually self-immolate leaving little black blobs on our en-suite bathroom carpet. So whilst I was waiting, I attacked these with some wet wipes with some hand gel inexplicably providing a good little bit of detergent and with an old toothbrush at hand, ready to be utilised if necessary. I then turned my attention to my (two sets of) black leather slippers I gave a good clean up followed by one of those polishes where you use it with its own built applicator to dispense a thin layer of liquid wax. By the times the carers did arrive, though, I had something to show for my wait, frustrating though it was in other ways. As soon as the carers were arriving, I got a phone call from one of the doctors at the surgery. I think that with the plethora of reports arriving from OTs and physios, the practice might be waking up to the fact that they really did need to be a bit more proactive in looking after Meg. They really needed the results of the blood tests from the samples that Meg gave yesterday. The doctor was somewhat appalled that the antibiotics that had been prescribed were ‘out of stock’ and were going to do some investigating and chasing to see what happened to our drugs. I mentioned this to the carers who knew of several instances of other conditions where much needed drugs seemed to be in very short supply. I suspect that the main culprit here is Brexit because supply chains have been so badly affected. But there seems to be a conspiracy of silence about all of this. But a quick search of the web confirmed my fears. I discovered that drug shortages are a ‘new normal’ in the UK and are being exacerbated by Brexit, a report by the Nuffield Trust health thinktank has warned. A dramatic recent spike in the number of drugs that are unavailable has created serious problems for doctors, pharmacists, the NHS and patients, it found. Mark Dayan, the report’s lead author and the Nuffield Trust’s Brexit programme lead, said: ‘The rise in shortages of vital medicines from rare to commonplace has been a shocking development that few would have expected a decade ago.’The UK has been struggling since last year with major shortages of drugs to treat ADHD, type 2 diabetes and epilepsy. Three ADHD drugs that were in short supply were meant to be back in normal circulation by the end of 2023 but remain hard to obtain. So the doctor concluded his call to me, fuming that Meg had been left without antibiotics for a week (where any condition could have dramatically worsened) and I shall just have to sit tight and see what happens.

We had only just about had our breakfast when he Eucharistic minister called around from our local church. Today was the day when, in theory, we should have been going off to the funeral of Meg’s cousin in Derby. We had already come to the view that our attendance at the funeral would have been impossible but if, by any chance, we would have wanted to attend the funeral this would not now have been possible owing to the delays of the morning. But the Eucharistic minister arrived at just the same time as the funeral service was due to commence in Derby so we managed to incorporate a few elements and reminiscencies of Meg’s cousin in our little service and so that we felt, in our own way, we had done our little bit to give Meg’s cousin some of the send off which she deserved. We had a busy morning because the minister had not long departed before a couple of physios turned up from the community branch. I had previously sent an email asking them to delay their visit to me because i thought they might collide with the other set of physios from the NHS ReAblement team and I did not want to be in a situation where one set of professionals thought they were being short circuited by the other set. But it was not too long before one pair of physios had departed and the second pair arrived to give us some instruction and advice on the Sara Stedy which was delivered yesterday. I must say that this new model looks bulkier but probably better built than the models of which we had experience in the local hospitals and the physios thought so as well. Instruction in the use of the Sara Stedy proved illuminating. The lead physio thought that it would take two care assistants to help Meg use the equipment (wanting to preserve my health but not aways be called upon to help) It took Meg a bit of a struggle the first time but on the second occasion Meg used it, it seemed a tad easier. When the care assistant arrived in the mid afternoon, we managed to use the technology to even better effect so I think we are in a situation where Meg’s brain, muscles and coordination are entering a learning process and she will get better and better at using the equipment as the days go by. I was relieved that Meg had a good sleep this afternoon whilst I managed to get the back lawn cut in a day of beautiful sunshine.

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Wednesday, 8th May, 2024 [Day 1514]

Today has turned out to be an interesting day. This is the day when our domestic help calls around and she can always be relied upon to lift our spirits and to lend a helping hand, when asked. I had resolved that after we had breakfasted this morning, we would repeat the pattern of the last couple of days and venture forth in our external transit wheelchair, brought inside the house for the purpose. Meg had had a bit of a disturbed night last night but I managed to make her comfortable after which she seemed to sleep more soundly but still seemed quite sleepy this morning. The doctor after he had called had prescribed some antibiotics but the pharmacy are having problems in supplying these – which may or not be a Brexit related problem. Pushing Meg in her conveyance down the hill is not really problematic apart from the odd one or two steeper uphill sections but I timed myself today and found that it only took me 21 minutes from leaving the house to arriving in Waitrose. We did not expect to see any of our friends today but nonetheless we had a pleasant coffee and apple pie between us before it was time for a quick purchase and then the journey back home again. One would have thought that the journey home, largely uphill, would have been a lot more difficult and would take considerably longer. But for reasons I cannot fully explain, the journey back does not seem particularly arduous and it only took me a minute longer to get back than it took to get me down in the first place. Whilst I was in Waitrose, I got a call on my mobile from the extremely helpful physio who knows Meg well and who said that she was going to call around tomorrow in the late morning. But as Meg’s condition seems to have deteriorated so some extra solutions seem to have been forthcoming to cope with attendant problems.Once we got home, we turned on ‘Questions to the Prime Minister’ which is a regular commitment on Wednesdays. The Labour party pulled off a bit of a parliamentary trick because there had been another defection of a Tory MP to the Labour ranks, this time the MP for Dover. But the announcement was timed for about one minute before the PM was due to answer questions and so when Keir Starmer, the Leader of the Opposition, announced that there had been two defections within two weeks the rest of the Tory benches were left scanning their own benches and the Labour benches to see who the defector happened to be. There has been a variety of reaction to Natalie Elphicke’s defection to the Labour Party on both sides of the political spectrum as she is on the extreme right of the Conservative party. Normally, the MPs who defect are at least ‘centrists’ but to have a confirmed right-winger join the Labour Party is causing eyebrows to be raised in both the Labour as well as the Tory party. After the normal knock-about stuff of PMQ’s with planted questions, prepared responses and the like, we pressed on with getting some lunch prepared. But just before lunch, we had a late morning visit from one of Meg’s carers who she knows quite well, a lady from Peru. We worked out that the physiotherapist who had called yesterday had recommended to social services that the number of visits a day be increased from three to four ((getting up, going to bed, and toilet assistance at the end of the morning and in the mid-afternoon) and this new arrangement had been put into effect immediately which was very good news for us. After we had had our lunch, I got Meg to doze for about half an hour and then a nurse called around who had been detailed to take some blood samples from Meg. The doctor had evidently ordered a full array of tests because I think that eventually up to eight samples were taken although the nurse had some difficulty taking the samples. Just before she left, the ‘afternoon’ carer showed up and this likeable lad was skilled in the use of the Sara Stedy, We had three attempts to get Meg to stand upright but she does not now possess the body strength to stand up so that the technology can be used as intended. This does not mean that all is lost, though, as I have a grab belt (which I could not immediately locate) and I think that putting this on Meg and exerting some upward pressure by one carer whilst the other carer folds the leaves of the Sara Stedy into place might just do the trick. The young male carer and I put Meg to sleep on the settee in our normal lounge and she seems to have fallen into a sleep again which must be to the good. Perhaps the exertions of trying to use the Stedy had all proved a little too much for her.Tonight, the extremely experienced carer who helps to put Meg to bed in the evening said we would devote a little time to seeing how we could use the Sara Stedy this evening and then, of course, I should have the help and assistance of the physiotherapist who is due to call around tomorrow.

Tomorrow is the day of the funeral of Meg’s cousin who died recently at the age of 88. As of two weeks ago, we fully intended to make ever effort to attend her funeral but the way that things have developed in the last few days, this is now almost completely out of the question. If Meg cannot stand even holding onto an open car door, then there is no way I am going to manage to get into a crematorium and thence to the reception afterwards, not to mention the strain of the journey. So this will, regretfully, have to be given a miss. In a similar vein, I had booked a couple of tickets for a concert late on Saturday afternoon but this, too, is now out of the question so I will just have to find some other entertainments for my birthday on Saturday.

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Tuesday, 7th May, 2024 [Day 1513]

So another day dawns and one wonders what today is going to bring. Tuesday mornings are generally devoted to a visit to our Waitrose friends followed by a visit to my Pilates class, but today I felt that the pattern needed to change. After the carers had seen to Meg and she was downstairs and breakfasted, I brought our wheelchair in from the car and we located Meg into it. Then it was just a case of getting some outdoor clothes on Meg and wheeling her down the hill. Today was a beautiful day and it was a fairly easy task to wheel Meg down the hill. Although there are a variety of ‘ups’ and ‘downs’ the journey is generally downhill so the wheelchair rather takes care of itself on the journey down. On the other hand, one has to have a careful watch for dropped kerbs and so navigation has to be done with a certain amount of care. But we were delighted to get to the store just after 10.30 and were delighted to meet up with our three friends as is normal. I felt somewhat tired after the journey down and wondered what the journey up the hill afterwards was going to be like. Nonetheless, we enjoyed our coffee and cake and I reminded some of the long serving staff that Saturday was going to be the seventh anniversary of the opening of the store. Mid way through our coffee, our Irish friend from down the Kidderminster Road called by with a birthday card which was very sweet of her to remember just before she shot off to Ireland with her husband. Now that we came to the journey home but, paradoxically, and perhaps fortified with some good coffee and cake, the journey back was fairly straightforward even though much of it was uphill. I was helped in this because the immediate start of the journey was quite steep (when I was refreshed) followed by a longish gently sloping downhill section towards the park at which point the journey was approximately one third over and the remainder easier to contemplate. Whilst we were having a coffee, I received a phone call from one the ReAblement team physiotherapist who said she was going to call around in the afternoon which was like music to my ears. The care arrangements for today included a young carer who we know well getting to the house so that, in theory, I could go off to my Pilates session. But I had already decided not to go which was just as well so that I could be at home when the physiotherapist called around. So the carer, Meg and I watched a little bit of a concert before I cooked our fishcakes and microwaved vegetables meal. When this over, the carer and I got Meg onto our settee (something I could not have done on my own) and then we encouraged Meg to have her after dinner nap. After about half an hour or so, the physio turned up and she seemed very good at appraising the situation quickly and accurately. When she saw Meg and I getting Meg onto her feet and attempting to load her into the transit chair, she had seen enough to make an assessment and immediately came to the view that a piece of equipment called a Sara Stedy was called for. Both Meg and I are familiar with this piece of kit because it was used extensively in the hospital during Meg’s recent stay and I suspected that something like this might be called for. So the physio made an instant request to the departmental store and I received a telephone call within the hour which indicated that a Sara Stedy would be delivered tomorrow afternoon. It may well that both Meg and myself as well as any carers need some training in the use of this equipment but I am pretty sure this will follow. She was also going to make a recommendation to Social Services that the number of visits per day should be increased form three to four and, under the circumstances, I really feel that we are now at that stage. So to summarise the situation, Meg’s strength has declined by a fair amount in the last week or so but we are getting some extra care and support, including physical equipment, to help us cope with the situation. After our carer had left, we ensured that Meg was comfortable before we left and we then entertained ourselves with three programmes. One of these was a dip into the Post Office Enquiry where a senior executive when presented with evidence of a possible cover up suddenly had a bout of selective amnesia. Whenever the lawyer posts up an incriminating email and asks evidence concerning it, the (vague) response was nearly always along the lies of ‘I cannot remember .. I did not appreciate at the time.. It was someone else’s responsibility ..’ or other irrelevancies meant to disguise the fact that they wished to avoid all responsibilities.

And now for something completely different. In the middle of the night a couple of nights ago, I idly followed a link from a ‘Twitter’ feed which led to a fascinating audio clip from a programme made by the renowned mathematician, Hannah Fry. This documented the attempts by a couple of econometric students to study and is possible amplify a very important paper which argued that once debt rose above 90% of GDP, then any attempts to reflate the economy were doomed to failure and the only available option was to follow a policy of austerity to reduce the amount of government debt. This paper was enormously influential in the management of debt in the advanced industrial economists. But the econometric researchers failed to replicate the result of the paper and requested from the author(s) the spreadsheet upon which the argument was constructed. In this spreadsheet, they discovered that there was a fundamental error in the spreadsheet and the data from several important economies was inexplicably excluded and the data from new Zealand which contained a year of really ‘rogue’ data was included. In short, the whole model was fundamentally flawed so the austerity regime to which we were subject and which affected the lives of millions of people was probably unnecessary and was the result of a spreadsheet error which had hitherto had been unexamined and unchecked. Whether this was the whole or only part of the explanation for the austerity regime to which we were subject is probably unknown and unknowable.

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