Wednesday, 27th March, 2024 [Day 1472]

Whilst yesterday was a pretty good day as the first full day at home after discharge from the local hospital, last night did not run quite so smoothly. Meg was awake when I came to bed shortly before 10pm and then was more than a bit fidgety. But then I undertook some remedial measures after which Meg seemed to go to sleep quite soundly whilst I stayed in the far corner of the bedroom using my iPhone and iPad for various little tasks. This morning, I got Meg up, toileted, washed and dressed without much ado although I have to adjust some of my techniques somewhat. This morning is the day of the week when our domestic help calls round but we have not seen her for three whole weeks whilst she was coping with a bereavement within the family. Naturally, we both felt that we had put through an emotional wringer in the last few weeks so we were happy to swap stories and give each other some mutual support. As it is a Wednesday and we are creatures of habit, we decided to call as we usually do each Wednesday into the Methodist Centre. Normally this is very busy each Wednesday but today it was strangely deserted so Meg and I concluded that the normal ‘Music and Movement’ type of classes had been cancelled this week. We got into conversation with an old lady who herself had memory problems but who had a companion to accompany her who has in a meeting in another part of the premises. The lady who started chatting with us had been the wife of a minister (now sadly departed) and had herself spent some about ten years as a missionary in Lagos, Nigeria. We swapped stories about these types of ventures as Meg’s cousin had at one time ministered to a community in Sierra Leone, and even survived a civil war in that part of the world. One thing that we learned today is that the centre is putting on a special afternoon on the third Friday of each month, rather similar to the club we attend on the second Wednesday of each month, so Meg and I will look forward to attending this when we attend the inaugural session towards the end of April.

After a good half hour of chat we get Meg back home and I did appreciate the assistance of our domestic help who helped with the transfer of Meg onto her transport chair and then onwards into our Music Lounge. We lunched on fishcakes and microwaved vegetables which was a quick and easy lunch to prepare. Afterwards, I set Meg down for a doze after lunch which is a habit which I am trying to encourage as I am sure her body probably needs it after a stay in hospital. When I come to think of it, I was hospitalised in the 1970’s after I was involved in a bizarre type of road traffic accident in which the driver of a Hillman Imp had fainted at the wheel of his car whilst approaching a T-junction with the result that I and a couple of my students were hit and set flying (almost literally) through the air. When I returned home from an operation on the severed muscles in one leg, I seem to remember sleeping for about a week both during the day and all the way during the night as well. Hospitals, with the best will in the world, can be noisy places and even a sleep can be disturbed by a nursing or healthcare assistant coming round to the ‘obs’ i.e. blood pressure, temperature and oxygen saturation levels. So this afternoon is proving to be a quiet one and I am looking forward immensely to tomorrow when, all being well, we will be reassessed by the NHS ReAblement team and a care package can be put in place for Meg. So far, we are coping reasonably well with a judicious combination of transports upstairs and downstairs (in effect metal commode chairs on wheels not used as a commode but as a way of whizzing patients from one room to another) and the recently installed stairlift. I think I fully appreciated how necessary this was when the exceptionally good physio nurses based in the community and is classified as the ‘Falls’ nurse, came round to see Meg and I and to assess our needs. When she witnessed how I was actually hoicking Meg up our staircase at the end of each day she told me that she put her hand over her face with horror as she could not bear to witness us making progress beyond the first one or two steps in a normal flight of stairs.

As so often in times of crisis, one’s family rallies around and have been magnificent. My son took upon the task of making me a meal to be stored in the fridge so that when I returned home from hospital every night last week, I had some instant food prepared for me. My daughter-in-law had raided her store of schoolbooks and brought into the hospital a series of books designed to divert Meg and to while away the long hours. Two of the most interesting of these turned out to be ‘Scrapbooks’ (not literally) but compilations of the foodstuffs, clothes and domestic items available first for the 1950’s and then the 1960’s. These are fascinating for anybody to look at – the Health Care Assistants in the hospital and our own domestic help loved glancing through the contents. What is amazing to behold is how many of the foodstuffs from even the 1950’s are still in the same recognisable packaging, the design of which has not fundamentally altered over seventy years. I suppose the manufacturers must feel that is a product has been chugging along with regular sales over the years, there is instant brand recognition and they might not want to change it in case sales suddenly plummet.For example the design of the packaging for Scott’s porage oats and the Heinz range of foodstuffs is practically unaltered.

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Tuesday, 26th March, 2024 [Day 1471]

So this is the first day after Meg’s discharge from hospital and although I suspected that the day might present a few challenges (for both of us), nonetheless we were both filled with a spirit of optimism. I was very conscious that after practically nine days in hospital Meg would have lost a little bit of muscle tone, not to mention getting the brain and muscles working in tandem with each other. For my part, I knew that I had to adapt some of my pre-hospitalisation techniques somewhat, so it was a learning curve for both us. But we managed the washing and dressing process using the wheelchair more than our standard bathroom chair and then we were prepared for the ‘great descent’ which was the first time that we had used the stairlift to go from the top of the stairs to the bottom (evidently, last night, it was the first time we had gone from the bottom to the top) The stairlift has a hand control but also two remotes, one at the top of the stairs and one at the bottom. In these early stages, I am operating the stairlift solely with the remote control because I did not wish Meg to use the hand control, get it slightly wrong and then panic. The transit downstairs went very smoothly and then it was into Meg’s favourite armchair in our Music Lounge before we had a fairly swift breakfast. As today is a Tuesday, we knew that it was the regular day for the Waitrose crowd to meet up in the cafeteria and it so happened that we all turned up at practically the same moment at 10.30am. Our other two friends, as well as the staff, greeted Meg very warmly and we had our normal coffee and comestibles. I decided to treat myself to a blueberry muffin but the staff insisted on making it gratis for me as it was Meg’s first day out of hospital. A little later one, the partner who generally deals with the flowers, came along with two bunches of roses and two bunches of narcissi which were distributed between us as wonderful little gifts to the regulars. Is it any wonder that we continue to frequent Waitrose when we were treated so well? To the same ‘flower lady’ who I know quite well, I opined that I was desperately waiting for Easter Sunday because on that day, I was going to break my Lenten fast and enjoy once again the things I had eschewed throughout the last six weeks which was chocolate, gambling, fast cars and loose women. I enquired whether on Sunday I could still forego the gambling but whether some fast cars and loose women would be available for me and they told me they would do their best. After a pleasant half hour, Meg started to feel a little wobbly which was not surprising as the changed routine made me forget to give Meg some of her regular morning medication. Once we arrived home, our neighbour was out starting to edge his lawn and he came over for a chat about this and that whilst we enjoyed some pale spring sunshine. I was experimenting a little using one of our recently acquired little transport chairs (actually commodes on wheels but without the commode bit in use) to get Meg in and out of the house. I had put down a rubber mat which helped to secure transit over some of the doorway flanges and then I got Meg onto our our little two seater settee whilst she tucked into tea and biscuits whilst I prepared the lunch. We have been used to a quite remarkably good regime of food whilst in the hospital so the challenge for me is to prepare somewhat smaller but tasty meals for Meg and myself which are are the equal of the hospitals. The Sunday that Meg had her little incident (a sudden drop in blood pressure) I had cooked a ham joint of which half was frozen and the other half available for our lunches, I made some onion gravy into which the ham slices were immersed, rescued some baby spinach from the fridge which was in danger of ‘going off’ and then cooked it, topping it with a poached egg and also our usual baked potato. So all of this worked pretty well.

The afternoon was spent in a very quiet mode but still one that has to be carefully micro-managed. We started off with a nice little period sitting side by side and both more or less dozing on our two seater settee after lunch. Then I negotiated a wobbly spell for Meg after which we watched a couple of ‘Yes, Prime Minister’ on the BBC iPlayer before deciding on a change of venue. I wheeled Meg down into our main lounge (which she has not seen for over 10 days now) and decided to watch the YouTube offerings that were available to us. Whilst I blogged, Meg was listening to a series called, I think, the world’s finest operatic arias and this was a source of mutual enjoyment for the two of us. I reflected that Meg and I have not to get cross with each other but to work as a team to work out solutions to little problems and, of course, pragmatism reigns supreme. But so far, we have had a pretty successful day and we will shortly have a tea which I suspect will entail something with custard, a bit of news, a bit of Politics on the Sky News Politics Hub programme and thence to get Meg to bed after that. Meg and I have scoped what we are going to do tomorrow morning and the first day without carers has actually worked out pretty well for both of us.

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Monday, 25th March, 2024 [Day 1470]

What an extraordinary and unpredictable day this has been. March 25th sticks in my mind for two reasons, the most important of which it is my son’e birthday because they were a bit short of staff the night he was born and I helped the midwife to deliver him. I sent him a congratulatory message when he was 56 years and 3 hours old. This date is normally in my diary when I would contemplate giving the grass the first cut of the season but this means re-commissioning the mower with freshly drawn highest quality petrol (a message I have learnt over the years, well charged with fuel stabiliser and of course oiled up for the season (or the first half of it), collected my newspaper and got off to see Meg and she was in a fairly tranquil mood but started to get more agitated as the day wore on. I hoped that lunch followed by a good long sleep would be a blessed release. So Meg enjoyed her pretty tasty lunch of spicy beef and roasted potatoes followed by a chocolate sponge. But the longed-for deep slumber after lunch which I have come to expect did not really happen and after a sort of twenty minute doze Meg started to get more and more fractious. A physiotherapist attending to other patients happened to be in the bay and Meg called out to her, whereupon she came over and I explained about Meg’s agitated periods during the day. She immediately went off and got Meg a tea and myself a coffee but was inclined to chat so I detailed our whole saga, explaining how Meg had been admitted and then declared medically fit a week ago and now, although we had the physio and the OT assessments we were stuck in a kind of limbo waiting for the ReAblement team to discover what resources were needed and how they were going to meet them. I explained that I had been looking after Meg for months and it was not at all problematic for me to do so again now that we had transport arrangements via commodes used as wheelchairs upstairs and downstairs and the real coup de grace which was a stairlift being fitted this morning. Although the fitting of the stairlift was scheduled for this afternoon they phoned up at 9.0 as I was leaving for the hospital and asking if they could come immediately which of course I had to decline. So a quick phone call to my son and daughter-in-law ensued and they graciously stepped into the breach to supervise the installation so that i could carry on in my journey to the hospital.

Then two events occurred in quick conjunction. An old lady even more frail than Meg was being discharged into the care of an ambulance crew who were having to get her via the Sarah Stedy (specialised transport equipment) onto a trolley to go into the ambulance. When the ambulance men asked if there was anybody at home, the old lady replied no but there was a keycode so that people could gain access to the house. The physio was an exceptionally ‘can do’ type of person and she said that the frustrations shared by the patients were as frustrating, if not more so, for the staff themselves and although she did not use these words, she expressed the view that she shared my pain. When I heard about the old lady being discharged, I turned to the physio and pointed out how ridiculous this situation was that someone evidently more frail than Meg was being discharged to an empty house whilst I could take Meg to a house fully equipped with mobility aids, stairlift and what have you. Then I asked her what would be the most adverse sequelae that would ensue if were were to take our own discharge. She informed me that she could probably go off and have a word with the Onward Care team (I think it is called) and explain that I did not really need any onward care in the short term because I had been providing care for months, had a well equipped house and could do anything that needed to be done myself. The physio shot off saying to of saying they would make a telephone call and also send a special message. Some minutes later, she emerged saying that she had a ‘new’ document and, in effect, the Onward care had agreed to a discharge without immediate care if I was happy to bridge the gap. Naturally, I said I would and I started to gather all of our various bags together, particularly the weighted blanket that we had used so much in the hospital. A doctor shot in, grabbled Meg’s notes and shot out again without so much as a glance in our direction.I now gained the impression that the ward sister was a bit put out by all of this as she might have thought that we were short circuiting the system. It will take some time to discharge her, she said because we have to get the medications. But I already have the medications with me that she has been on for months and which the hospital hasn’t changed, I protested. Then it was a case of ‘But you have to wait for transport’ at which point I pointed out that I had my own wheelchair with me in the back of the car and as I took Meg out for coffee every morning, I was quite capable of getting Meg back home. So we carted all of the possessions into the back of the car and I returned with the wheelchair, entered the ward and whisked Meg off to the waiting car. The whole of this venture started at about 3.0pm and I was leaving the hospital at about 4.45, getting home for 5.00pm. So I got Meg home and my son and daughter-in-law called round to show me how to use the newly installed star lift and I cannot believe how fortunate I may well have been with just a timely amount of insight and pressure at just the right time.

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Sunday, 24th March, 2024 [Day 1469]

So quite an action packed day for me today. I knew that there were three things that I needed to do before I got to the hospital this morning so I left home about three quarters of an hour earlier to accommodate them. The first was to get some cash out of an ATM and this I did in a local supermarket where I can immediately outside the ATM machines. Having done this, I needed to fill up of petrol which I did in the supermarket filling station. As I went in to pay, I noticed that they had a rack full of ‘Sunday Times‘ so I managed to get this whilst paying for my petrol. Having allowed plenty of time for things to go wrong e.g. chasing around for the complete Sunday Times, I was now in plenty of time. I decided to go to the hospital anyway which I did arriving at about 9.10 but knowing that the Ward would not normally me in until 10.00am. The normal volunteer staffed coffee bar was closed but a hospital shop was open which was equipped with a huge Costa Coffee machine that brewed a fresh cup of cafe for you but where they issued a bill which was paid for at the counter of the shop. This seemed to be quite a civilised arrangement and as I was so ridiculously early, I succumbed to the temptation of an Eccles cake which comes in the category of ‘naughty but nice’ for me. Having consumed my coffee and Eccles cake, there was a slight logistical challenge in getting to the men’s loo before the day kicked off. There was a sole middle aged male typing away at his laptop and I asked him if he could mind my hat and pile of newspapers because I didn’t want to go into the toilet with them. The toilet was in the process of being cleaned but no cleaner was evidence so I kicked the sign away and used the facilities as normal. Upon my return to the coffee lounge to retrieve my hat and newspapers, the chap busy typing away followed my example and I looked after his things whilst he went to the loo. When he returned we had an interesting snatch of conversation because it transpired that he was a crime writer and warned me that any story I might tell could end up in one his books. I reciprocated by telling him I write a blog every day and he again could feature in it. Nonetheless, I did manage to get one or two amusing anecdotes into the conversation and who knows whether they might appear in print one day. So we parted and went our various ways and I made for Ward 14. Here it appeared that Meg had had quite a reasonable night and I was relieved to see that the day staff seemed pleasant and sympathetic. One HCA (Health Care Assistant) lives only about three quarters of a mile away from using Bromsgrove so we were evidently used to the same haunts. After about half an hour, our Eucharistic Minister turned up from our local church – normally she would have visited us in our own home but when she heard of Meg’s plight, she said she would come over the hospital. As well as having our normal little services, our friend also brought us a couple of crosses made out of palms (traditional in Catholic households and distributed each Palm Sunday i.e. the Sunday before Easter) which it is today. The other offering that we had today was a gift of what is known as a ‘Miraculous’ medal. These used to be almost universally worn by Catholics in the 1950’s (i.e. during my youth) but I think this practice is rapidly dying out. The design of the medal dates from the 1830’s, apparently, and is a sign of devotion to the Virgin Mary. Lunch was a little delayed today but no sooner had it been served, than our long-standing University of Birmingham friend put in an appearance. We had previously texted each other and I knew that Meg would be delighted to see him, as indeed was I. So we had a delightful hour or perhaps even longer and we able to add a bit of flesh ono the barebones of our hospital trajectory so far. After our friend left us, Meg started to have one of her anxiety attacks but we have a variety of ways of dealing with this, one of which involved a loo visit using specialised piece of equipment know as a as a Sara Stedy. In the middle of being attended, our son and daughter-in-law turned up and we able to make preparations for the installation of the chair lift tomorrow. Our son and daughter-in-law had really set to with a vengeance and attacked some of our shrubbery that was threatening to get raoudly out of hand. and for this, I was eternally grateful. In the middle of this visit, one of my nieces phoned so, fortunately, I could leave Meg temporarily and locate myself in a corridor where I could get a reasonable reception and we were not in danger of annoying other patients and their visitors. We had a fairly long chat about how the modern NHS seems to fall over itself with the kinds of discharge protocols of which we the recipient at the moment and it was wonderful to hear from her. We both wish that we loved closer so that visits would be more feasible.

After all of our visitors had left, Meg was in a state best described as fidgety and I tried for a long time to get her in a calmer mood before I had to leave at 8.45. But the night staff which came on shift at 7.30 seem delightful and I trust that if Meg does have a disturbed night, they will deal with it sympathetically. I prefer to leave Meg either asleep or nearly asleep and it is. not a pleasant feeling leaving her when she may be rather an unsettled state. Obviously I try to reassure her that I will return at 10 in the morning but that might seem a long way off when you are suffering, as Meg does,from separation anxiety.

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Saturday, 23rd March, 2024 [Day 1468]

And so the weekend in the hospital wards started. The minute I arrived in the car park it was evident that a different regime was in place at the weekend. For a start, it was quite easy instead of almost being impossible to secure a car parking space – evidently, this is because no outpatient departments are scheduled for Saturday mornings, Even the ‘Friends’ coffee bar was closed in which I normally while away 5 minutes until the Ward is open to visitors.When I arrived on the ward, there was a calm almost tranquil atmosphere with each one of the six patients in the bay either in a deep doze (as was Meg) or fast asleep. I was soon to discover the reason why. Apparently, during the night, several of the patients with dementia had got vocal and agitated with some attempting to climb out of bed. I think this had affected Meg as well because although she cannot remember much of it, the nursing staff had told me that she needed some calming measures during the night. So the morning started to pass quite peacefully and there were no physiotherapists or occupational therapists to do their rounds. To make up for this, the nursing assistants had it on the rota to take the weekly weight of the patients which involves getting them out of bed and sitting on a weighing chair. This activity is often combined with taking patients to the toilet as well, the idea being that it encourages a degree of mobility in the patients. The morning had actually started off very well indeed because my son and daughter-in-law had called round with a whole series of books (most, if not all, belonging to my daughter-in-law rather than the school) which I could use to divert Meg. We started off the morning when Meg had woken up properly with a flip through the pages of ‘The Times’ and then I turned my attention to one of the reading books. These are generally well illustrated and are intended to be read to children by their parents and apparently the one I used yesterday called ‘Dogger’ is quite well known (but written before these days when the term ‘Dogger’ might be misconstrued.) And so lunch time came and, again, the quality of the food never ceases to amaze me. The fare today (which we had chosen yesterday) was a spicy chicken with herby potatoes followed by a bread-and-butter pudding. In the absence of any better offers, I pilfered. some of Meg’s food and whilst she had eaten her fill, so I live on the rest that would be normally be thrown away. I am trying and so far succeeding in getting Meg to sit on a chair most of the morning and after lunch and a toileting to get her to have a really good nap in the early afternoon. This worked quite well today, so much so that Meg had at least three quarters of an hour whist I actually fell into a deep sleep for about 20 minutes which I evidently needed. The mid afternoon was not so easy because Meg’s agitation levels were increasing and her concentration levels decreasing but I do what I can to keep Meg calm within the constraints of the situation. But the highlight of the afternoon definitely came with the arrival of my son and daughter-in-law for an hour’s visit between 4pm and 5PM and this definitely helps the time to fly. Something that helped to divert all four of us, actually, were a couple of books that my daughter-in-law brought along of Scrapbooks of the 1950’s and the 1960’s. Each one of these is filled with the products, clothes, food, artefacts and events of the decade in question. Naturally the Coronation in 1953 was allocated a lot of space. After our visitors had left, there was not too long to wait for tea which was a little earlier today and after tea Meg is generally quite calm and we try and listen to some music together. But then the ward sister came along to inform me that they were going to transfer Meg to an adjacent ward – of course I have spent a week cultivating good relations with the various staff and this will have to start all over again tomorrow morning. The transfer from one ward to another seemed unnecessarily long, complex and tedious. It involved getting Meg out of bed when she was a bit sleepy and sitting her in a chair whilst all of her bed was clinically cleaned. Then the new patient and family were brought to the bedside and then, for some reason whisked away again. Then Meg and all of her possessions had to be transferred but we had to ensure that the conveyance that had brought the new patient was itself clinically cleaned. Sp the entire process was long, tedious and irksome and started at 8.15 but was not completed until 9.30pm. I should say that I could have left Meg alone in this sort of No Mans Land but I wanted to see her settled into her new bed, without even unpacking her things, before I felt able to leave. The new ward has two 4-bedded bays instead of the 6-bedded bays from the previous ward and I have gleaned that that this is a medical ward in which the patients, although frail like Meg, are regarded as medically fit and are awaiting their discharge. We shall have to wait and see what Sunday is going to bring bit it does feel a little like starting all over again.

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Friday, 22nd March, 2024 [Day 1467]

As soon as I got into the hospital this morning, I put in a request to speak with the hospital social worker. This was less than satisfactory as she indicated that Meg’s case was now in the hands of the ReAblement team and they would have to assess ‘capacity’ (ours or theirs I do not know) and it was out of her hands. During the course of the morning, I managed to text my own newly allocated social worker who advised me to contact the ReAblement team. She tried to be helpful by giving me a number which was a generic number rather than a hospital specific one and as there was a huge queue and this would not have been productive anyway I abandoned this. I bumped in to the physiotherapist who seemed vague about the exact procedures from this point but indicated surprise! surprise!) that a lot of box ticking was involved. I realise that I am in a system that I cannot penetrate or question so I just have to sit and wait and not ‘bucking the system’ All last night, I have been contemplating what dire consequences would follow from taking Meg’s discharge but I suspect that this is cutting off one’s nose to spite one’s face. I now realise that nothing will happen today, Friday and of course Saturday and Sunday intervene. So a Monday discharge is the earliest and then we have the (for me) dreaded Easter holidays intervening. The frustrating thing is that Meg was admitted on Sunday, announced medically fit in Sunday and has been ‘bed blocking’ for five whole days and goodness knows how many more.

So now I turn attention to Meg herself. She seemed reasonably OK and seemed to have slept through the mayhem that was happening two beds away. The first of my strategies is working relatively well and that is to take the photographs on my iPad and then work my way through them, one by one. I also had bought a copy of the newspaper and I flipped through the pages ignoring some items and commenting upon some of the others which I could summarise as I went along. The other successful little venture of the morning was to go through a child’s reading book designed, I think, for early readers of the ages 6-7 I would imagine. This was an illustrated story of a boy and his little toy dog (inappropriately called ‘Dogger’) which was lost but eventually retrieved. We paused at some of the points in the story to expand a little on some of the themes – for example, the little boy had a sister who liked to go to bed with lots of cuddly toys. Actually, our son did so as well so Meg had a little giggle reminding ourselves what they were. One of my earliest memories of a soft toy was a panda which a very good friend and trainee opera singer of ours bought for our son. This panda (called ‘Panda’) went to bed every night but occasionally had to be retrieved from his cot to give a much needed wash from childish dribbles. But when the panda emerged from the spin dinner, the animal achieved a curvilinear state, not to mention the holes in the spin dryer drum that left their mark. So Meg remembers well retrieving the panda, bending its curvilinear shape into a more normal one and then replacing it back into the cot hoping that our son would not notice it had ever gone missing. The final thing that reprieved the morning for us was a book called ‘Cutting Remarks’ which was full of humourous quotations. We headed straight for the Politics section and some of remarks that politicians made about each other were hilarious and caused us quite a good few giggles. I seem to remember reading the reports that an American sergeant made about his men in a similar vein and one sticks in my memory that a particular GI ‘sets himself the lowest of standards which he conspicuously fails to meet’ The other remark that I remember pertains to one of my colleagues, now departed, who hoiked his not very bright son round minor public school after minor public school until one headmaster remarked to him wearily ‘Mr xxxx, we as a school are not particularly renowned for our academic standards but even we have standards below which we dare not fall’ (Incidentally, I adopted this as a working motto when we were considered whether students should pass or fail in our annual Boards of Examiners). The morning was punctuated by three other sets of visitors which is always a good thing. One was the physiotherapist who assess Meg the other one and for whom Meg fared a little better today when using a frame. The second was the Dementia support worker who started off her working life in a print works so she had made an interesting career transition. Incidentally, I always love to hear how people started off and how they got to do what they are doing this morning. The third person was a junior doctor (as doctors do not wear flapping white coats these days and their name badges are so inconspicuously worn I could not really tell the grade of doctor to whom we were speaking). We knew that Meg was basically medically fit but that he had been detailed to call by. I explained the non-pharmacological techniques that I deployed at home to manage Meg’s conditions and he admitted to being suitably impressed. Lunch today was a spicy beef followed by stewed plums and custard and they are absolutely delicious (Meg ate the whole lot, leaving me without a lunch today)

The good staff that have been on yesterday and will be on again tomorrow were replaced by a personnel (who seem to be one sister across two bays of beds and a nursing assistant allocated to each bay) I think the staff today seemed a trifle less conscientious and somewhat brusque with the patients under their control. Having said that, they were under a certain amount of abuse from two patients one of whom had been playing up all night and most of the day. Eventually she was removed and I wondered if she had moved to a more secure and sound proofed unit for everybody’s peace of mind. The woman immediately next to Meg admitted to being scared as did the night sister. The afternoon was punctuated by our son coming for an hour’s visit which was a wonderfully welcome release and after he left, the afternoon drifted to a close with a nice tea (and then Meg and I played each other some Mozart on my iPhone)

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Thursday, 21st May, 2024 [Day 1466]

I suppose today started, in a manner of speaking, when in the middle of the night I got up and sent off two emails to people who might be able to ease the bureaucratic logjam issue which I have with the hospital attempting to get Meg discharged. The first of these was to the specialist nurse who looks after Meg and knows our situation intimately and I thought I might be of use as an advocate. The second was the ‘Falls’ nurse who was one of the community based occupational therapy team and who Meg and I have found extraordinarily helpful in the past, not least because we have seen her twice in about the last ten days. The upshot of all of this is that both were incredibly sympathetic but in the last analysis, they were as powerless as I feel myself to be. This morning I rang the number for the Bromsgrove area team of social services and was amazed hen our previous social worker answered the telephone. I explained our plight and really indicated that our newly allocated social worker should be picking up the pieces but I did get the advice that it was really down to the hospital based teams at this stage. I had intended that I would try to spend some of the day today in what might be called ‘field work ethnography’ This betrays my earlier professional life as a sociologist because those sociologists that like to study the minutiae of social life and to understand ‘what goes on around here’ use a technique called participant observation although today ethnography is the broader and more inclusive term. The whole point about participant observation as one of the initial ‘gurus’ in the field explained in his study of street corner Italian gangs in Boston (I believe) is that one collects data by being immersed in social situations as a genuine participant – but not so immersed that one loses all objectivity and academic rigour. The most famous quote from his book is that ‘I started as being a non-participating observer but I finished by being a non-observing participant’ This is the classic balancing act of this style of work and classical social anthropology (to which Meg and I were fully exposed in our undergraduate education at Manchester University) used participant observation extensively but in the British case, the Empire (as was) was a huge natural laboratory for these types of studies, Later generations of sociologists spread their attention to factories, schools and particular hospitals. Hospitals have always been a favourite locale for ethnographers because if they are actually inpatients they are truly participants – but may well have a lot of time on their hands to write up field notes based upon the observations they make during their stay. I engaged in a semi-serious style of this type of ethnography because when I had a period of teaching IT to public administration students in the Complutense University of Madrid, I wrote a sort of diary which I transmitted on a weekly basis to my colleagues at what was then called Leicester Polytechnic. This I called ‘Carta de Madrid’ and I had in mind the series by Alastair Cooke named ‘Letter from America’ which was broadcast on Radio 4 for years. I did a similar thing when I worked n Jakarta (although now it was called ‘Letter from Jakarta’ These missives were largely based on a diary format (what I actually did all day) but I allowed myself a little bit of self-reflection as I encountered new situations. This line of work even continued into my PhD because I did incorporate some participant-observation studies of paediatric clinics in Leicestershire – I tried to interview parents of the children to ascertain what they though of as being a ‘quality’ consultation with the consultant but incorporated some of my own observational data as well.

Back to today – mid morning, we were delighted to at last have a consultation with a hospital based Occupational Therapist – we had already seen the physiotherapist last Monday morning. But if our spirits of an early discharge were raised they were soon to be considerably dampened. The two reports have to be combined and then set forth as data to the hospital ReAblement team who then have to specify what needs to be put in place before discharge and that the end of the day the local authority based social services then have to put forward a care package to take over from the NHS Reablement team and all of the costings and the resources for this have to be agreed. I doubt this will be done in a day and am desperately hoping that it might be put in place by tomorrow, Friday but of course then the weekend intervenes and nothing will be forthcoming from anybody on a Saturday or a Sunday which means two more days in hospital for Meg. Having said that, she was more tranquil than yesterday and indeed had a very long sleep straight after lunch about which I was pleased at one level but somewhat worried at another level because too much sleep during the day may result in periods of restlessness in the middle of the night which is the last thing that we need. But I was quite proud of the way that Meg was coping and she was keeping her agitation levels down but there was at least one other demented female on the ward who was both deaf and not averse to mouthing the most extreme and rude opinions about the staff who were desperately trying to provide her with a modicum of nursing care, which was proving to be difficult in the extreme.

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Wednesday, 20th March, 2024 [Day 1465]

Well, what a stressful day it has been today for reasons that will be explained shortly. I thought that today was going to be a ‘long’ day and how right I was. I had slept reasonably well and popped into Waitrose to treat myself to a coffee and a pastry before I got to the hospital at shortly before the approved opening hours for visitors at 10.00am on the ward. Meg and I had not been long reunited with each so to speak when we were greeted with the excellent news that we were to be discharged today in fact immediately, once the necessary bureaucratic procedures for discharge had been complied with. So I got Meg dressed and then all of her goods packed away and we were trundled off to the discharge lounge where we were treated to a coffee and we knew there would typically a wait whilst medications were prepared and the discharge note signed off by a doctor. Then the bombshell struck. The sister from the ward came along to us to explain that discharge was not possible because Social Services had not agreed the care package necessary so we would have to stay in the hospital until they did. I did not have the number for Social Services on my phone bit so I phoned the manager of the Care agency to ask him to liaise with social services and to work out what was going wrong. I tried to get in touch with the hospital social worker who came along, apologetically, to inform us how things worked. It seems that once we have entered the hospital the existing ‘care’ package becomes voided and a brand new has to be put in place and then agreed before the hospital would be happy to discharge, But then we have a third player which is the hospital ‘Reablement’ team which organises the immediate care needed in the week or so after discharge but they would not act until they had a report from the hospital occupational therapy team. Now it gets even murkier. The sister on the ward explained that was no reason why the occupational therapy assessment could, and indeed should, be carried in one’s own home so that the exact package of kit needed could be assessed. But then the hospital social worker told us that the ward sister and management had been misinformed and the protocols stated quite clearly that the occupational therapy assessment had to be made in hospital and before discharge. She then informed me that she thought that the sister in charge of the ward did not understand the protocols and should not have led me to believe that we could have discharge followed by occupational therapy assessment and not the other way around. I then told the hospital social worker that the previous local authority social worker (who has since passed on our case to someone who I have not met but us just a name) should not have led to to believe that an enhanced care package would be available even though we were making the necessary monthly contributions. I pointed out that we already had a package of care in place for the mornings and ‘all’ that we needed was probably one care worker in the evening to help to get Meg to bed. Then I was told that this social worker should not have led us to believe that we could have more resources within the current financial envelope and that ‘she should not have given you that impression’ So we are left with the situation in which two groups of professionals have said that cognate professionals were not following the correct procedures. So Meg and I trundled back to the ward awaiting an ‘immediate’ call to the occupational therapy team to come and assess us so that we could be be discharged. We were then told that although they visited the ward daily, they had no time to make an assessment of Meg today, When I protested that if the occupational therapy team had visited the ward that day, was it before 10.00am when I arrived and I was told that they might have made an assessment without seeing me by just looking at the paperwork (which sounded fishy to me) Finally, the news cane through from the ward sister that the OT team would not be visiting today so it was at least one more night in hospital and perhaps even more.

So Meg and I had a delicious lunch (or at least Meg did and I stole various bits of it to keep body and soul together) but I have to say that Meg became increasingly agitated and distressed as the (long) afternoon wore on. I tried every strategy I could think of from loo visits (which is quite a procedure with a device called a ‘Sarah Stedy’), to heavy blankets to examining photos on the iPad to reading parts of her books to her to, to listening to some music tracks But none of these worked. Eventually tea at 5.30 came as a blessed relief and after a somewhat quieter spell eventually one of the nurses and I got Meg undressed, washed and ready for bed in a fairly quiescent frame of mind and fairly sleepy before I left at about 8.45. The same nurse told me that after I left at he same time Meg was quite agitated last night and was asking for me for at least half an hour but eventually a degree of exhaustion took over. So I wonder what tomorrow will bring?

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Tuesday, 19th March, 2024 [Day 1464]

Well, you never quite know what a day is going to bring. After a better night’s sleep and suspecting that I was going to be with Meg for most of the day in hospital, I decided to take along with a couple of iPads on which are stored a lot of photos and also an incredibly ancient iPhone in which there re something like 200 classical tracks and which I can therefore use as a type of MP3 player. I knew I had some brand new and high quality Panasonic ear pieces which are skilfully designed so that they do not drop out of the typical ear. Before I started to go to the hospital, I called in at Waitrose and saw two of my regular Tuesday mornings where I could give them a quick update on the vents of the last two days. One of the regular staff was confiding his woes to me as a close family had had an accident and damaged his spine so we were swapping macabre hospital stories with each other. I timed my visit to the hospital to arrive just before relatives are admitted which is 12.00pm. But the 12.00pm opening time related to the initial ward to which Meg was admitted on Sunday evening whereas the ward to which she was relocated has access time starting at 10.00am. So tomorrow, I shall be there at 10.00 and prepared for a long day (until 9.0 in the evening) but meal times punctuate this as well the diversions provided by the iPads. Today, Meg was somewhat calmer than she had been yesterday when she suffered from an acute bout of separation anxiety. As I arrived just before lunch, Meg was served with a delicious pork steak that would not have been out of place in a high quality restaurant. I was going to purloin Meg’s apple crumble but the staff came to my aid. They told me that there was a system of vouchers that could be supplied but you had to go off to a restaurant in a different part of the hospital. I indicated that I would forego lunch as I really did wish to stay with Meg all of the time and did not want to leave her. The staff took pity on me and rustled up a full scale meal for myself as well, which I accepted with alacrity. After lunch and a bit of a rest, we had a visit from a couple of Dementia nurses and they were very jolly and we had a good chat together. To be fair, everything they had to say I already knew but I did point out the advantages of the ‘heavy’ blanket which I went home and fetched yesterday and which has proved useful ever since. I have told several staff about this aid and some staff had never heard of it at all whilst others know of it vaguely – certainly none of the staff in the hospital had actually seen one before. So I have been suggesting the use of this to many of my contacts. For example, my University of Winchester friend might be interested in this for his wife. Juts before I set off on the road this morning, our new Asian neighbours who have just returned from several trips around India had only recently returned home but seen the ambulance on Sunday morning, So the wife of the couple phoned me and I have her a quick update of the events of the last two days but she was very interested n the concept of the heavy blanket might prove of benefit to a nephew living in Canada who is experiencing autism quite badly these days. I posted the web access details through our neighbours front door before I left this morning.

No occupational therapists showed up today so I felt that this day was a bit of a wasted day, today, and therefore somewhat frustrating but I am hopeful they may get their act together so that I can Meg discharged back home as soon as possible. In the late afternoon, Meg had quite a wobbly session so this was a bit tricky but I managed to get through it with a variety of strategies. Of the six bays in this particular ward, I think that dementia patients probably constitute four of the six. Having said that, some of the others receive a visitor for an hour or so but I am the only person who is there the while time to provide support to one’s loved one (and the staff have noticed this and evidently appreciate it) Quite often of it is a case of getting Meg transferred from bed to chair or given a wash at the end of the day, the nursing staff appreciate an extra pair of hands – this may break nursing protocols having relatives assisting them but as I point out to them, and they acknowledge, I am only doing in hospital what I would have done (and have been doing for months) at home if Meg were not in hospital.

During the day when Meg has one or two more restful moments if have cut and pasted updates of what is happening to Meg so that our friends know what is going on. Our two intimate Spanish friends had read my blog and were horrified and email me profound messages of support. I replied that it was best for them to follow the blog every day and we would FaceTime them when I get Meg home. As soon as I returned home, my next door looked out for the car lights and then insisted on coming in and making me a cup of tea whilst I updated her on all the news. People are really rallying around for help and I do appreciate all of this very, very deeply.

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Monday, 18th March, 2024 [Day 1463]

And so a new day dawned but I must admit that last night I did not sleep particularly well as so many things were going through my mind for most of the night but I did fall into a deep sleep at 4.45 eventually. This morning, I knew would be quite a busy one as there were a lot of emails to write as well as telephone calls to make. As I suspected would be the case, my blog was no sooner posted last night than my sister, who lives in Yorkshire, phoned me and we spent the best part of three quarters of an hour in mutual support of each other. The text version of the blog held on a different server in the case of disaster striking is useful and to update some of the key professionals looking after Meg i.e. the specialist Admiral Nurse and the excellent occupational therapist, I merely pointed my emails to the text version of the relevant day of blog and this evidently saved a lot of repetition. I have since received very supportive reply emails back from both of them for which I am truly grateful. This morning, I raced around filling bags with a variety of things that might be needed. The first was evidently clothes in case of an imminent discharge, the second was toiletries which I had assembled into a toilet bag not used since our vacationing days and the third was little objects that I thought might be useful such as a little stand alarm clock in case the ward clock was not visible. Before I was due at the hospital at 12.00pm, I popped into our local Waitrose where I bumped into two of our normal ‘Tuesday’ friends so I was able to give them some indications of the events of yesterday before I bought some bottles of cordial to take along (which I remember was an item which was sorely needed after my own hospitalisation some 5-6 years ago) I arrived at lunchtime and Meg had been served with a rather wonderfully tasty meal of what I think was a haddock kedgeree with new potatoes and green beans, followed by rhubarb and custard. I snaffled the sweet for myself as it was the only lunch I was likely to get and then Meg enjoyed her lunch. Shortly afterwards, we ere promoted to a proper medical ward one floor up which was a much larger and more pleasant atmosphere with, I think, six bays in it for the patients. There we whiled away the afternoon until it was time for the physiotherapist to come and assess Meg. When the physio saw that Meg could hardly stand, let along walk she diverted her attention to a wonderful contraption called a SARS machine which transports patients quite easily from bedside to commode to toilet and elsewhere. Meg was showing some signs of truculence at this stage and I wondered what was about to come in the afternoon after. I left.

I left the hospital at about 4.30 and it only takes me about 20 minutes or so (and a car parking fee of over £7) to get home. At about 5.30 I got a telephone call from the hospital because Meg had ‘gone ballistic’ and they had no idea how to cope with her. Eventually, the phone was passed over to me but before it was, I heard Meg’s clarion tones declaiming in a very loud voice and with no incomplete sentences ‘This is an absolute disgrace. You ought to be ashamed of yourselves’ and similar imprecations. I am used to this sort of thing if Meg has a sudden mood swing but the hospital, full of sweet little old ladies slumbering quietly on the beds, were suddenly assailed by Meg in full fighting mode, as it were. I said to the hospital that I would drop everything, which I did and drove along the dual carriage way at 80mph to get there as fast as I could. I managed a quick phone call to my son to appraise him of the situation and he promised to turn up an hour later. By the time I got there, the nursing sister had managed to exert a slight degree of control over Meg but I had taken the precaution of taking along with me Meg’s heavy blanket which can work wonders in situations like this. But the combination of the reduction of the evident separation anxiety, the heavy blanket and a degree of hand holding and stroking her hair gently was enough to get Meg calmed down and almost in a beneficent condition. When my son and daughter-in-law turned up, they had brought along some chocolate which is always helpful in the short term. As it was the end of meal time I wondered if there was any ice cream left over but was informed that Meg had consumed at least two of these already. Nonetheless, the nursing staff managed to rescue another making the third in a row. I made a half-hearted attempt to get Meg discharged on the spot because I told them that I thought I could manage her condition much better at home rather than having the whole life of a hospital ward disrupted. Of course this attempt failed but tomorrow is another day. There should be an Occupational Therapy assessment tomorrow and Meg is, in theory, medically fit and waiting to be discharged but we have to ensure that all of the support packages have got to be in place before the hospital will consent to a discharge which must be ‘in their eyes’ to a safe environment. A nursing assistant and I got Meg washed and ready for bed and when I left at 9.00pm Meg was quite calm and peaceful but I wonder what the night might bring.

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