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Old 14th January 2020, 07:10   #871 (permalink)
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Re: My Bolshie Husband

Oh dear. I think I will shelve this one for the time being. Enough to worry about.

Strangely, Dave received one of those questionnaires. I ignored it as at the time he had been re-admitted. They sent a chase up letter, then they telephoned. I told them that they would not like the answers if we completed the questionnaire. They said that they would welcome criticism. I did say that it would be much more than criticism and the woman said to complete it anyway. Of course, I didn't and I don't know where it is now.

I demanded to see a doctor yesterday. A doctor appeared as if by magic! Very nice lady I have not seen before. She said Dave does not have gangrene and that the nurse was not only wrong, but in any case shouldn't have said it. It appears the scan they did of his feet was to look for osteomyelitis - which he doesn't have. They had started him on an antibiotic in case he had this, but did not repeat the course once it was finished. She said that she would liaise with the vascular people to see what they had in mind going forward - if anything.

She repeated something I had heard before. The doctors have a meeting late morning and discuss all the patients on the ward. This so that every doctor is au fait with the various situations. This meeting is repeated late afternoon as well. However, she told me that Dave's case was being complicated by the fact that 'he now has diarrhoea'! This is beyond belief! Don't they read notes? I swiftly put her in the picture with regard to the history since August 2018 when all this started. She was surprised, to say the least.

I asked her about a diagnosis of dementia and why this cannot be carried out - at least in principle. She said that this is usually carried out when the patient was 'medically fit for discharge'. I asked her how they could ever say Dave was medically fit whilst he has chronic diarrhoea and now these lesions on his toes. She agreed that they couldn't. Progress or what? I also put her in the picture as far as the diabetes is concerned. Explaining that Dave has had erratic sugar levels for the last 43 years, and that no-one has been able to sort this out in that time. So they have no chance in a couple of weeks. She took the point, and said that it was good to 'hear his history'. She also said that she felt I had forgotten enough about diabetes in this time to write a book. I agree with this. The methods of treatment have changed so much, particularly with the advent of the pen injectors instead of having to draw up the insulin through a rubber bung! Dave had a pen given to him by the Harley Street man, many years ago. Before they became throwaway objects. We always had to wait whilst the cartridges were ordered as chemists did not stock them as a normal line then.

I also told her that I consider he had a stroke back in April, since when his head has been all over the place. She said she would look into this, but I am not holding my breath. If Dave's notes say anything about this episode, they will be carefully couched to absolve the hospital of any blame for the faulty machine - which I consider caused this. She did say that although it took five or so weeks to get a head scan, if he had actually had a stroke, then there would be evidence. I asked her if she was sure that every part of the brain was visible in this procedure. She agreed that it was not. She also agreed when I said that if this was the case, there could be brain damage where they could not see it. Although she said that damage of this kind would have shown up and would not be hidden - she felt.

She left saying that she was going to look into what was happening and their thinking about his feet and if there was anything concrete, she would come back and tell me. She did not return. So I assume they are still in the dark as to what is causing his foot problem. Other than the fact that diabetes does mess with the sensory capacity of feet and damage can occur quite easily. I did point out to her that these lesions appeared whilst he was in hospital. He did not have them when admitted in March 2019. As I said, he was in hospital at the time, so there is no question of shoes rubbing, or anything of that sort. It was during the seven weeks they kept him in bed that these appeared. It is indeed a pity that this was not addressed when it first manifested itself all those months ago.

In himself, Dave was okay, although very quiet. It is rather difficult to hold a conversation now, as his mind goes off somewhere. I told him about replacing the bathroom light and he didn't comment. Just goes to show that he is not taking this in. For example, when I told Mark, the first thing he said was "I hope you took the fuse out". A while ago, this would have been Dave's immediate reaction too. Now it just seems to wash over him.

When I got up to leave, he was trying to get out of bed. He said he was going to 'walk you to the door'. He still doesn't realise that he cannot stand or walk. He said that he supposed he was 'sleeping down here again then'. Not exactly. More 'up here' on the 5th floor. Pardon? 5th floor? 'What is this place then?'. I left. Nothing to say to that, we have been there before.

Maisie
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Old 15th January 2020, 09:52   #872 (permalink)
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Re: My Bolshie Husband

It seems Dave has once again got C.Diff. They are trying to organise another sigmoidoscopy. The woman doing the form filling said that given Dave's situation, she was going to try to get this done while he is in hospital. She said it was 'down for' outpatients, but said she could see this would prove more difficult than getting it done now. No discharge date in sight, so this would seem to be organising something for months ahead. Stupid. Just have to wait and see now.

The weather here was atrocious yesterday. We could both feel a draught in his room. Not the windows - I have taped them up. It was coming from both under the windowsill (needs mastic - which I am not prepared to do) and also from the bathroom. It was gale force in there. How, I don't know as there is not a window to open. It seemed to be coming from over the suspended ceiling. Got Dave another blanket. I then found that the radiator was turned right down. It is hidden behind a wall with only the control knob and a bleeding valve on show. I turned it up as far as it would go and it did start to get warmer.

It seems that Dave has not got gangrene nor osteomyelitis. So what about his toes? The consensus is that this is being 'caused' by his 'poor diabetic control'. Bollocks - in a word! This started in hospital between March and October 2019, and it is down to them. They should have addressed this problem a lot earlier. It seems that whilst the lesions are dry, nothing will be done. However, if the scabs come off (somehow) and they become wet, then vascular is all ready to amputate! I made it quite clear that if this happens, then the brown stuff will be hitting the fan! He has now been back in hospital 40 days, and was sent there because of his toes problem. Nothing to do with diabetic control - which they are once again trying futilely to control. As they can't, they are blaming the toes problem on this. Again - that word. I will just have to watch to see the situation doesn't get worse. It already is on his left foot, and I have told them this. About two weeks ago, there was no redness and no scab. Now it is red again and has a large scab. How can this happen? Ask me one about rocket science! They just keep falling back on 'poor diabetic control'. Yes, well. He is in hospital under their care, so do something about it. Can't? Tell me something I don't already know. We never had this control problem when he was at home. His levels did go up and down a bit at home, but we had a tighter control over the levels then. They do not.

He didn't eat the ham sandwich which they say he ordered for lunch. Rubbish! Dave does not 'do' sandwiches. A male HCA came in saying he was administering insulin. No you are not, until you have checked his level. Oh, a bit on the low side? Big surprise. So come back later. Such basic stuff!

The weather is lot calmer today, so hopefully the draught problem will have abated. Turning up the radiator must help. Everyone who came in yesterday commented on how cold his room was.

Maisie
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Old 15th January 2020, 10:52   #873 (permalink)
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Re: My Bolshie Husband

Quote:
I made it quite clear that if this happens, then the brown stuff will be hitting the fan!
Maisie unless you have all this officially logged as in PALS (or whoever) then you can almost be guaranteed they have not logged all this on their records so you have no argument.
Time and time again you have had discussions with various doctors and they tell you they were not aware of Daves situation and they will look in to it.....they are not logging it!

Unfortunately the world we live in cannot be trusted and everything must be detailed to cover your back. Now even something simple like house insurance we log the persons name / date / time of the tel conversation as invariably they ignore the `do not auto renew`and we get a deduction from the bank a year down the road, a phone call with the info soon gets it reversed.
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Old 18th January 2020, 06:26   #874 (permalink)
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Re: My Bolshie Husband

Maisie, hope everything is OK with you?
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Old 18th January 2020, 09:50   #875 (permalink)
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Re: My Bolshie Husband

Nothing to report from yesterday. Same old, same old.

I got a call yesterday late afternoon. Recorded message from the hospital. Asking Dave to confirm his outpatients' appointment on 21st January! What are they playing at? I cancelled it and told them why. Now I have to find out how the appointment got made in the first place. According to hospital "records" it was as a result of a GP referral on 1st May 2019 at 5 past 12. This is puzzling, as Dave was in hospital at the time and obviously did not visit a GP. The plot thickens! I will inform the ward today that I have cancelled this appointment.

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Old 19th January 2020, 08:37   #876 (permalink)
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Re: My Bolshie Husband

The staff on the desk were not bothered. One said it was probably an old request anyway, so it is okay. So much for that. I will find out what the GP is doing, or was doing, all that time ago.

When I got there, it was just before lunch. Dave's came in - tuna sandwiches! Dave does not do sandwiches, end of. Also, he hates tuna with a passion. I asked where was his proper lunch, as on the sheet I spent over an hour filling in three days before. What sheet? A week's menu requests, stuck on the fridge door. No it isn't. So who has taken it upon themselves to remove that and throw it away? Makes me so mad. The bloody woman insisted that Dave asked her for tuna sandwiches and, anyway, if it was on the door, why didn't he tell her? As controlled as I could be, I told her in no uncertain terms what I thought of the service and also that as Dave has dementia, it is pointless asking him anything most days, other than his name! I took the sandwiches back to the kitchen. I refrained from telling them what they could do with them, but said instead that they could put them back in the fridge.

I went through the rubbish bins in the kitchen, my list was not there. It is a printed thing the hospital produce for completion for patients who cannot order for themselves. A nurse came in and said she had seen the list on the fridge door in the morning. So where was it now?

The 'service' woman came back and asked if I wanted another sheet to fill in. I said 'what and waste another hour?' She took off saying that she did not have to be spoken to like that. I called after her that she was bloody lucky I didn't land her one! Okay - I know. Over the top and could get myself barred. But I just could not believe what had happened.

I did get another sheet and filled it in. I got one of the HCA lads to photocopy it for me twice. The original is now in the kitchen, there is a copy stuck on the wall in Dave's room and I have the third. Let bloody sandwiches appear now!

So, as a consequence of this, Dave did not get any lunch. He ate the yoghurt which had accompanied the sandwiches. I then had to tell the staff nurse that Dave was not having insulin, as he had not eaten sufficient. I asked what his sugar level was. He didn't know. Looked in the chart, last test was at 10.30am. This was half past one. Test then was 12. I repeated that he was not to have the insulin, but if he wanted to prove me wrong - do another test now. He declined. I also refused the pills he has to take with food, for the same reason. So all in all, not a very satisfactory afternoon.

Dave was very vague most of the time. I don't know where his head was, but it wasn't with me. I did get him to eat a couple of ginger biscuits, just in case. But he seemed okay. I only had to change him (and the bed) once yesterday. I did check before I left and he was okay. I know I should get the staff to do it, but I can do it just as easily as them, and Dave says I am more gentle with him than them. Well, I don't know about that. If stuff has to be wiped, then it does. They had run out of the wet wipes we normally use. Good job I had a packet I had taken in from home. I have loads of them here which will probably not get used now unless I take them either to the hospital or the nursing home when he goes back.

Obviously, no doctors about on a Saturday. I have given up trying to find out some sort of discharge date, however loose this might be. Sometimes they have said things like, if his blood sugar levels stay as they are, he might be able to be discharged in a couple of days. But nothing like that is forthcoming at present.

I am having today off. The Sunday bus timetable is wicked. I spend more time standing about waiting than actually visiting. Dave was quite upset, as I expected, saying that Monday is a long way off. I know he looks forward to me visiting, but it is really getting to me now. Particularly as my feet and legs are bad - still swollen and painful. He doesn't really understand this, basically because I haven't told him. I told him at the start when it happened, but not since. He has forgotten I have a problem.

I have decided to make it regular that I don't go in Thursday and Sunday. Market day for the first, and a respite day for me for a Sunday. There are so many little jobs that need doing, some of them just plain annoying (like ironing - my philosophy there is to ban ironing and stay wrinkly) and the carpet in the lounge has a snowstorm on it. Where do all those white bits come from? Most of the time, I ignore what I call all the four letter words. Wash, wipe, dust, iron, etc.

I collect watches, have done for years. However, they become a problem when the batteries run out. Maybe I want a particular watch, and it is dead. So I pick another. But the numbers requiring batteries increases. I have literally dozens that need seeing to. I have hundreds of watches, also very sad I suppose. But it is a hobby for me and I like to have my watch match what I am wearing. It has rubbed off on Mark. He too collects watches. But his taste runs to the huge things with all kinds of dials on them, giving so much information that it is difficult to see the actual time! Anyway, I am going to have a go at the watches today. I have every size of battery available. I buy them in bulk from eBay. Generally about 1 for twenty or thirty batteries. Cheaper than the local shops who charge 3.95 (at the cheapest) for a small battery.

So that is me for today. I have had my coffee, and taken the pills, all sixteen of the bloody things! Before making a start on the watches, I am going to indulge myself and look in one of the freezers in the garage to pick something for my dinner.

Maisie
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Old Yesterday, 09:29   #877 (permalink)
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Re: My Bolshie Husband

Nothing to report from yesterday's visit. Dave was quiet, which does seem to be happening a lot more these days.

A doctor came in and said that they were trying a new antibiotic to try and stop the diarrhoea. I asked the name, and he said he could not pronounce it! Wonderful! Is Dave a guinea pig? I will have to get a look at their computer when the drug trolley comes round to see what it is called. The doc asked if we had any questions, and I said that I wanted to know when Dave could leave. He said that if this new drug works, then he was quite hopeful of an early leaving date. I sincerely hope he is right. Poor Dave has had all the stuffing drained out of him and is so despondent most of the time. He could really do with something to buck him up. Although, the nursing home as a substitute for our home is not particularly inspiring, it is better than the hospital. Whenever it is mentioned he says that at least he has a TV there. I know he misses this. I think I would have gone crazy by now in his position - and I read, and also do knitting. In fact, I take my knitting into the hospital now. It is interesting how many of the nurses have asked to see what I am doing and have said that they cannot knit. Okay, I am a couple of generations older than them, but I would have thought that knitting is a quite basic skill. After all, you only have to learn to do two stitches. It is the combination of these which produce the patterns. I also crochet, which is much more difficult in my opinion as there are many variations on the stitches.

I had a telephone call yesterday evening from a lady who said she was from a council department, dealing with - in a nutshell - dementia diagnosis. At last! Although it seems she has seen Dave before (?). I know nothing about this. She said that he didn't do too well with their questions. I told her that he would do even worse now. She was gobsmacked that he was still in hospital. She had been told he was discharged. I couldn't get to the bottom of when this was supposed to have happened, but I rather think it has to do with his discharge at the end of October 2019 to the nursing home.

She started asking me questions, the answers to which surprised her greatly. She is obviously not aware of the full history story. She said that they needed to conduct this test again, with me present. She arranged for a colleague of hers to visit Dave in the ward on Friday at 1.00pm. She said that she would instruct this chap to get a full history from me. I really hope this is the beginning of something.

I won't tell Dave, there is no point. He will forget before Friday. He asked me for a couple of hard boiled eggs, which I will take to him today. The only eggs that you can get in the hospital are in the form of omelettes, which he says are a bit tough.

He had cottage pie for his lunch, which was correct in accordance with his menu list. But the fruit salad didn't materialise, apparently because the main kitchen didn't send it up. So he had chocolate ice cream instead. I don't think he has had this before, it has always been vanilla. Last night, he should have had sausage and mash - we'll see if they got that right.

Maisie
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Old Yesterday, 10:46   #878 (permalink)
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Re: My Bolshie Husband

Clinical negligence

Quote:
The NHS in England faces paying out 4.3bn in legal fees to settle outstanding claims of clinical negligence, the BBC has learned through a Freedom of Information request.

Each year the NHS receives more than 10,000 new claims for compensation.

This figure includes all current unsettled claims and projected estimates of ones in the future.

The Department of Health has pledged to tackle "the unsustainable rise in the cost of clinical negligence".
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Old Yesterday, 18:34   #879 (permalink)
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Re: My Bolshie Husband

He got the sausage and mash, but didn't eat it. Said he wasn't hungry. Today he was eating his lunch, cheese and tomato omelette, chips and beans. I had a struggle to get him to eat a quarter. He is back to the chew, chew, chew again. I told a nurse that I want him assessed by the speech and language team as he is having difficulty swallowing. I want his food pureed, or he will get a tube up his nose. Well, that's what I have told him. It doesn't help though. He still refuses to swallow anything solid. The food must be mush in his mouth, but still it won't go. Drinking is not a problem. Neither is a pudding of any description. Just the main part of the meal. Whether this happens remains to be seen.

The 'new' antibiotic that the doctor couldn't pronounce is Fidaxomicin. So much for he couldn't pronounce it. The mind boggles!! Sounds alright, but I will reserve judgement until I see if it is going to do anything to stop the diarrhoea. According to the internet it should. But then Dave does not conform to any known parameters!

He had to be changed three times whilst I was there. First time I did it and the second was following immediately on! The third time, I got some help from an HCA lad. These new tablets need to start working immediately.

Tonight he is supposed to be having minced lamb in gravy with veg, with peaches in juice to follow. I will look at his chart tomorrow to find out if he ate it.

Maisie
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