Last night was Meg’s first night sleeping alone in her hospital bed which we have located into our repurposed ‘L’ shaped section of our downstairs lounge. When the professionals indicate have you considered a bed downstairs, there are many sequelae to all of this. For a start there are toiletries, clothing, and a variety of cleaning aids and towels to be considered. I am trying to set us a series of little systems each of which is as unobtrusive and clutter-free as possible. For example, I have liberated a little storage box into which Meg’s clothes can be placed ready for the carers to dress her in the morning. Similarly, various washing aids are located in the downstairs bathroom and so on. As it was Meg’s first night alone as it were last night, then I was slightly concerned that Meg might wait up anxious and distressed in the middle of the night and I would not have any knowledge of this. So I set up a little system whereby I have a little portable folding mattress and I know this is reasonably comfortable because I have used it before in the middle of the night. All it needed to make me comfortable given the temperature at the moment was a sheet folded double and a blanket and this was fine during the night. I also brought my clock radio downstairs so that I could drift off to sleep listening to some music and then be awakened with Radio4 coming on at 6.30am in the morning. This little system worked pretty well and I managed to get everything folded up and put away into unobtrusive storage locations. A couple of very competent care workers that I know well turned up at the appointed hour and they gave Meg a good body wash on the bed which evidently is now adjustable to ensure that they are working at a reasonable height. But a body wash requires a certain rolling of the patient from one side to another so can turn out to be a more complex procedure than might be imagined at first sight. Then it was case of utilising the newly installed hoist to get Meg into her wheelchair and then relocated into our Music Lounge so that I could proceed and get some breakfast into her. Porridge in a mug rather than toast tends to be an easier option nowadays and then we were ready to attempt to set forth for the first time in four days. I had found amongst other aids one of those squarish foam cushions in a vinyl case which I think a physio had supplied for Meg at some stage in the past so I thought it would be a good idea to add this to the wheelchair to enhance the comfort of the same whilst I was wheeling Meg first down and then up the hill.

Now the nightmarish part of the day started. The foam cushion which I thought would be a good idea proved to be a bit of a disaster because, as Meg does not possess any ability to seat back in a seat, she gradually slipped further and further forward which meant that her feet were in constant danger of hitting the ground and occasionally did so. This culminated in several instances where I could not propel Meg forwards as she was in a semi-recumbent position in the wheelchair with her feet on the floor. As we were crossing the road immediately in front of Waitrose, the traffic had come to a halt where I was trying to get Meg’s feet back onto the foot stays in order to get across the road. In fact, one of our Waitrose friends observed my plight and came out of the store to offer some assistance as did one of the Waitrose staff. So we consumed our normal coffee but I had to cut our visit short because it was evident that Meg was slipping further down (and none of us can actually move her back up the wheelchair again) The journey back proved to be particularly problematic. One fairly old lady (late 70’s I would say) offered her assistance in trying to get Meg into a more upright position. After I had proceeded some yards further on, Meg had slipped down even more and were feet were plonked firmly on the pavement about a foot in front of the wheelchair. Observing my struggles trying to move Meg’s feet back into a position where I could actually get her home, a passing motorist stopped his car whilst he, and a passing very helpful female helped me to haul Meg back properly into her seat. I took the opportunity to remove the cushion which I judged to be the immediate source of all of our problems and once this had been removed, I managed to make my home without further incident but very slowly. Just as I was arriving back home, the two carers turned up (two being necessary because Healthy and Safety are such that a single carer is not allowed to hoist Meg singlehanded although paradoxically I could do it myself once I have got myself sufficiently conversant with how the hoist works) The carers then take Meg down to her downstairs bed, make her comfortable, and then via the hoist and the transit chair get her down to her favourite armchair in our Music Lounge. The sitting carer came to relieve me so that I could, in theory, go off and do Pilates but after the traumas of the morning, I was more than happy for the carer to keep Meg company whilst I prepared some lunch. I desperately wanted Meg to get some sleep this afternoon bit it was not be. I did, however, go onto the internet and ordered some ankle straps which I hope will serve to keep Meg’s feet and ankles strapped to the frame of the wheelchair the next time we venture out. I have also asked that our doctor refers us on the Worcs Wheelchair Service but whether we meet the exact criteria for this I cannot determine and I have heard, on the grapevine, that there might be an 18 week wait in any case. But one can only ask.

Well, today has been quite a mixed day so far. I had rather hoped that the care staff would get Meg washed, dressed and ready to face the world before the OT staff were due to call around in the late morning. But this was not to be as the care staff were still under instructions to keep Meg in bed. I had a couple of the more friendly and knowledgeable staff on this morning so we decided that we have Meg fully dressed and ready to come downstairs when needed. So most of the morning we were in our bedroom waiting for the phone to ring and eventually a pair of physios called around at about midday.They had a look at Meg and then another look at the new arrangements put in place downstairs and then we decided on a course of action. We got Meg down on the stairlift and then the physios/OT tried her out on the Sara Stedy. Although we used this bit of kit successfully, they could see it was a bit of a struggle so decided that a hoist was going to be the better solution to transferring Meg from one place to another. We started off getting Meg into one of our armchairs and we then had a think about things before transferring her onto the hospital bed. The thing about these care staff is that they are excessively practical and not unnecessarily rule-bound and I have a great deal of time and respect for them. The lead worker had actually worked in a care setting before she had fully trained in physiotherapy and she remembered how Meg was a few months ago and I found her incredibly helpful. We discussed a range of options including some that I had sort of worked out for myself. Instead of having bed rails or guards on which it is possible to be impaled, we jointly agreed a strategy in which we would set the bed to the lowest possible position which is about 17″-18″ once Meg was all tucked in and ready to go to sleep- then if she were to tumble out of bed it would be a general slither rather than falling from a great height. The physio tried to stay on to make contact with the care workers who were about three quarters of an hour late and they did manage to have a few snatched words with each other as one was departing and the others were arriving. Then things started to go somewhat pear shaped, as it were. Two very young care workers were sent along – one still at university and doing bits of fill-in and the other a recent graduate. The care workers are pleasant and willing but by the very nature of things are not very experienced. To make matters worse, one of them had not been trained n manual handling and therefore was not allowed to use the hoist. The other young girl could not use the hoist on her own so the sending along of two inappropriate care workers meant that Meg was confined to bed for the whole of the afternoon when I hoped that we would be able to get out and about. But the physios have to formally get Meg’s arrangements signed off and transmitted to the care agency, all of which takes time. In addition, Meg needed some additional help and I would have dearly wanted the care agency to have supplied the appropriate staff under the circumstances. The staff who are due in the late afternoon are appropriately trained but this is all a little bit late in the day for us.

In the middle of the afternoon, I got a very welcome phone call from one of the nurses who specialise in Meg’s condition and, as always, she was a great source of both advice and support. I had wondered aloud to the OT whether Meg might qualify for a more comfortable wheelchair if she was now going to be spending hours in it when not in bed. The Admiral nurse was going to liaise with the OT to see if we could make a referral to the Worcestershire ‘Wheelchair, Posture & Mobility Service‘. It looks as there may be forms to fill in and assessments to be made, criteria to be fulfilled but at least we are exploring the avenues open to us in this direction. I have found the Admiral nurses to be excellent in every way and I am full of praise and admiration for them, not least because they manage to fulfil a quasi-advocacy role for patients in Meg’s condition and have proved helpful in the past.

We always knew that the news today was going to be dominated by the publication of the Contaminated Blood Inquiry which is being billed as one of the biggest scandals in NHS history. Not really being in front of our TV today, we have not really caught up with the news as it unfolds. Sky News is reporting that the infected blood scandal was ‘not an accident’, with ‘catalogue of failures’ and ‘downright deception’ by NHS and governments. The Department of Health workers had deliberately destroyed documents, which amounts to a ‘pervasive cover-up’, says inquiry chair Sir Brian Langstaff. Neither do the politicians avoid censure. Turning to the wider Thatcher government, the report said a repeated line that patients had ‘the best treatment available on the then current medical advice’ was ‘not true. In short, adopting the line amounted to blindness.’ In particular, the evidence of Lord Clark (Kenneth Clark, one time Health Secretary) was said to be ‘argumentative’, as well as ‘unfairly dismissive’ and ‘disparaging towards’ those who have suffered. What is absolutely amazing to us is that blood products sourced from American sex workers, prison inmates and addicts and predictably at an incredibly high risk of AIDS as well as Hepatitis C, were routinely used by medical personnel for decades with no thought as to the consequences. It looks as though British authorities had been pressured by American commercial interests pushing ‘Factor 8’ with no thought to the consequences for haemophiliac patients who were kept ignorant of the risks to which they had been exposed and from which many died.

So we got one half of the difficult weekend negotiated when Meg is confined to her bed on the instruction of the care agency. However, last night after she had settled off to sleep, I did manage to get the back lawns cut, which they badly needed only to be reminded that I must seize opportunities when I can to get the front done as well. Meg had a somewhat disturbed night and had to be made comfortable in the middle of the night which is not easily done singlehanded. Sunday mornings are not particularly to be looked forward to as we are scheduled to have our care workers at 7.00am rather than the normal 8.30am and this makes it a longer morning for the two of us. After breakfast I made a lightning visit out to collect the Sunday newspaper and the reading of these occupied me for most of the morning whilst Meg watched the Alan Titchmarch programme on ITV1 which I must admit I quite enjoy myself. In some of the odd moments that I had whilst preparing breakfast this morning, I managed to get some audio sorted out for Meg. I have one of my Panasonic units which is permanently tuned to ClassicFM – as the display had failed, I had contacted the seller who let me have the whole unit gratis. This is complemented by a Pure Radio in which since the ‘upgrade’ of ClassicFM I have been unable to receive on this DAB unit but the happy combination of two slightly dodgy systems give us what we want which is Radio4 when we want it and ClassicFM as a default. After the late morning care workers and had come and sorted Meg out, I cooked us a lunch which was a conventional meat and two veg meal, having had a salad yesterday. To try to ensure that Meg is getting enough fluids inside her, we finished off with a coconut yogurt which Aldi sell but which is absolutely delicious.I have started to think about how the hospital downstairs interacts with other domestic systems such as washing and dressing. The care workers are very helpful and practical and once Meg is out of bed and mobile, then they can wheel her down the passageway along to our downstairs loo which might be better in the long than running all over the place with bowls of water, towels and other washing gear. I have started to think about the clothes in which she is to be dressed because I want to avoid the clutter of this all over the place in the lounge-cum-bedroom. I have ordered from Amazon an under-bed chest (available at a ridiculously cheap price and delivered) and I think this might be a better solution than additional downstairs cupboards or chests of drawers and the like. I seem to remember that when we moved house some seventeen years ago now, whilst we were surrounded by seemingly dozens of cardboard boxes, I tried to resolve only to bring into a room (such as our study) only that which was absolutely essential for it to function. The intention behind this was good but with the passing of the months and years, this good intention did not last for very long. However, I am going to try to keep Meg’s new sleeping space as completely uncluttered as I possibly can.

Now for a bit of a technology moan. My principal computer is an Apple MAC and I have the official Apple mouse to accompany my main system. This mouse whilst being quite ergonomically well designed needs every so often to have its internal battery recharged and the recharging point is on the bottom of the mouse which means it has to be detached from the computer whist charging which is inconvenient to put it mildly. My Apple mouse started to malfunction as the mouse pointer used to get half way across the screen and then ‘stick’ I wondered whether the problem might be my very old and ancient mouse mat so I bought a new one but the problem remained. Eventually, in desperation, I bought an Amazon Basic ergonomic mouse which needs a little nano receiver in a USB port and so it is effectively cordless. I bought this a week or so ago thinking would bring it into use when the Apple mouse finally seemed to die a death. Eventually after the mouse played up so much I decided to bring the Amazon Basic mouse into use. It worked perfectly and needed no configuration – once the nano receiver was in the USB port the mouse worked perfectly and with a great deal of sensitivity although this is adjustable and I thought that the £13 I paid for it with delivery included was well worth while.

As Meg and I were settling down for a little afternoon rest, my son and daughter-in-law turned up to spend some time with us. I was particularly glad to see them as we could discuss some of the the bedding requirements that Meg may or may not require once she occupies her new hospital bed downstairs. Also, whilst my family were sitting with Meg, it gave me the opportunity to dash out and get the front lawns cut which badly needed doing – I am convinced that grass grows more quickly in May than any other of the summer months. I always feel that once I get as far as June or July, the rate of growth slows down somewhat and the miss of an occasional week can be tolerated but as things stand, I do need to keep up with a weekly routine. Meg and I will be sleeping in the same bed for the last time in approximately 57 years so this is going to be quite an adjustment for us both to make. But I am hopeful that Meg will enjoy her new surroundings which will make life easier so that the care staff can use a hoist to get from the hospital bed into her wheelchair and then, hopefully, we can resume our little trips down the hill.

I always thought that today was being the start of an uncomfortable weekend, ever since we were informed by the care agency that they would not sanction their care staff moving Meg out of bed until such time as a hospital bed and a proper hoist had been installed in a downstairs room. Accordingly, after Meg was safely put to bed, I set to work rearranging some of the furniture in our ‘L’ shaped lounge such that one half of it would remain a conventional lounge whilst the other half of the ‘L’ would be brought into use as a downstairs bedroom. The furniture configuration was actually quite easy and I was just left with a few indentation marks from the feet of chairs and the settee we had in that half of the room. But I deployed an old trick which I deployed 26 years ago and it works like this. You take an ice cube and leave it overnight in each of the indentations in the carpet. As the ice cube melts, the fibres of the carpet absorb the moisture and in the morning, the problem of the unsightly indentations if not completely resolved is certainly very much alleviated particularly with a hoovering immediately afterwards. This morning, Meg was confined to her bed but fortunately stayed fast asleep for several hours this morning. During this time, I raided the blanket chest which we keep at the foot of our double bed and brought some sheets downstairs for use on the hospital bed. I also took the opportunity of doing some much needed tidying up and throwing away and this took most of the morning. In the late morning, the hospital bed arrived and this was assembled by a very friendly Egyptian who had a degree in law but was employed in this country as an equipment supplier for the NHS. The bed took a certain amount of putting together and evidently connecting to an electricity supply. The bed is not the really fancy model that you get in modern hospital ward but is probably the generation beforehand. Nonetheless the orientations deployed by using a control remote are quite comprehensive as the total height can be raised or lowered and one can adjust the height of the head and the knees a well as a complete tilt upwards or downwards. I have had a chance for a little play on it and it really does seem very straightforward. When the care workers came, there was comparatively little that they they needed to do for Meg as she had been asleep practically all of the morning, So whilst we had some ‘spare’ time so to speak, the three of us made up the bed downstairs with the bedding I had managed to locate. I did find a complete duvet bought decades beforehand and all in its original packaging but I really need a duvet for a single bed. I may need to go online and purchase a single bed duvet but I am going to hold my horses for the time being. Firstly, the next few day are going to be very warm and secondly we have already pressed into service the sheet and the blanket that we acquire from the hospital the other day. It might be that we do not actually need a warm duvet until the it starts to get colder in the autumn so we can probably make do in the next few days. I was more than happy to let the two care workers make up the bed according to what they think of as being best, the only thing that we may need to do is get a more specialised mattress which if Meg is going to be in bed for more prolonged periods may be needed to avoided pressure sores not to mention the prevention of more blood clots.

Once the bed had been installed and the carers had left, I rescued the fish pie which had been in the oven for far too long. Nonetheless, I managed to rescue sufficient for a few mouthfuls of nutritious fish for Meg and the reminder for myself. As Meg had been asleep practically all of the morning, she is passively watching some TV which unfortunately on our bedroom model, does not have an Amazon prime stick installed on it. We are hoping that as from Monday, Meg will be sleeping downstairs and I am reconciling myself that after 57 years of sleeping with a married woman (i.e. Meg) I am going to have to get used to sleeping on my own from now on. Of course I have been used to sleeping on my own when I was doing my stints abroad (a term in Madrid and a month in Jakarta, Indonesia) but that is very different because one knows its is only for a temporary period of time which will end but now we are in a very different scenario.

I normally do not take a great deal of interest in football but there are intriguing matches recently. Many local people here in Bromsgrove are great fans of West Bromwich Albion otherwise affectionately known as ‘The Baggies’ but they have were swept aside by Southampton last night. Southampton will meet meet Leeds United in a play-off to see who can enter the Premier division next season in about two weeks time and these are often ferocious clashes. The FA Cup Final itself if often played about the time of my birthday but seems a bit later this year being held next Saturday. It is a Manchester City vs. Manchester United affair and one wonders what interest it will have for football fans who are not Mancunians. Having said that, some cup finals fail to live up to their excitement and this is normally greater when you have a much more lowly ranked team playing a much more highly ranked team just in case the underdog happens to turn the tables. But I must confess to enjoying Rugby Union much more than Association Football these days not least because in Rugby Union there is none of the nonsense of threatening the referee to try to get them to overturn a disputed decision.

Today is evidently going to be a day of very mixed fortunes and I am not sure how things are going to turn out. We knew that we would have some visitors this morning and indeed, an OT and a physio turned up this morning and agreed that as a matter of priority should have a hospital bed and an accompanying hoist downstairs. In our ‘L’ shaped lounge, I have an area designated for where should a bed should go and also sought the opinions of two carers on the assumption that three sets of eyes are better than one and we are all in agreement. Tonight, I will need to do some furniture shifting but that is not a difficult job as it turns out. The good news is that a hospital bed is going to be supplied to us on loan from the NHS as long as it is needed and the hoist that will be supplied along side it will evidently work in conjunction with it. Also, it appears that the bed will have adjustable positions and have a specialised mattress which all ought to assist in getting Meg’s legs into the right position so that the DVT can gradually right itself. Once these ReAblement professionals had left, although it was midday I decided that I would take Meg out in her outside wheelchair as it was such a beautiful day compared with yesterday, when it seemed to raining all day long. As we passing the church friends of ours who are avid gardeners, they took the opportunity to have a break from their labours as they were both busy in the garden and invited us round onto their terrace where we enjoyed some delicious coffee and biscuits. Meg had a coke which she has probably not drunk for years now.

From this point on, though, the day started to go a little pear-shaped. Half way through our repast with our friends, I got a call from the manager of the care agency who informed me that he thought their staff were at risk having to handle the dead weight that Meg presents whenever we attempt to use the Sara Stedy or even to stand up. So he informed me that Meg should be confined to bed until a hospital bed and hoist had been installed and, presumably, his care staff have been instructed not to depart from these instructions. So that presents me with a short term management problem how to cope with Meg under these constrained circumstances. Later in the afternoon, I got a call from the OT of the ReAblement team to let me know that a bed and hoist would be delivered tomorrow which you might have thought was good news. But the care staff could not use it before Monday midday at the earliest as the OT staff had to come along to assess health and safety as they bold me that a hoist had to be operated by two care workers at once. So the OT will come along on Monday and let us hope that everything will be usable from that point on but there is a certain degree of unpredictability about all of these things.

I also got some rather devastating news from my University of Winchester friend who has been caring for his very ill wife and battling with the bureaucracy to get continuous funding to cope with her care. But the devastating news for the two of us was that the application for continuing care funding has been refused even though my friend had been through a two stage assessment and in the critical assessment, six of the seven panel members had thought that continuous funding out to be awarded. But the chairperson was the one dissenting voice and when this put to the whole of the Integrated Care Board, the Board as a whole backed their chairperson and ignored the other six votes. Evidently an appeal must be prepared but this extends the whole agonising process, made even worse by the fact that my friend had been thinking that his chances of success were reasonably high. We are going to telephone each other night to console each other although my friends’s woes are so much worse than mine. At some time I shall have to start thinking about bedding and the kinds of facilities we need to have on hand for a ‘bedroom downstairs’ as we are moving in that direction. I have to wait until Meg is safely and soundly asleep before I start on these domestic matters but the trouble is I am fighting a degree of tiredness after I have been caring for Meg during the day. Today is one of those days when she resolutely refuses to try to sleep after our lunch which means that there is no real respite. Neither of us felt particularly hungry this lunch time, even though I had a fish pie in the oven. I have left it there for the time being and I fed Meg and I on a thrown together salad meal which all I feel we felt like today. It is quite a problem getting the requisite amount of food and drink inside Meg these days, even though those who needs for an absolute number of calories must have been diminished as her activity levels are so low.

It looks as thought the Trump case may be heading for a resolution within days now. The case hinges upon whether each of the jurors agrees with the Michael Cohen (ex Trump lawyer) version of events, even though he is a proven and convicted liar. But the one telling defence that Cohen has is to admit that he did lie and lie and lie again but he did it to protect the interests of ex-President Trump. Despite the various revelations, Trump’s poll standings do not appear to have been damaged as such but one interesting thing has emerged from the trial. This is that Trump often appears to doze off even whilst evidence is being given against him in the courtroom and this is leading some experts to wonder whether Trump might be showing the early stages of dementia. But dozing off and making elementary mistakes in recall seem to have been a problem with Jo Biden so the great American public are faced with the prospect of electing one of two equally senile presidents. Even if Trump is convicted, there will be an instant appeal and the case will drag on for months yet, which will be to Trump’s ultimate advantage. Indeed, I saw an ardent Republican giving her opinion that Trump would be convicted initially but would almost certainly win on his appeal.

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

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.

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.

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.

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.