Advice needed regarding antibiotics not given by hospital

Dear Kydi,

                  There is always a chance of this situation as the hospitals just seem to want to get rid of people at every opportunity. One cannot pay staff or systems to care, they either do or don't as individuals. I suspect that anyone who was following this situation knew there was a high likelihood of this outcome. Speaking as a remote individual there is nothing I can do but please don't think that I don't care less.

                                  Sorry , Eric F.

 

The hospital can't be blamed this time as it was Don's choice to be discharged despite them warning him he was unsafe. It was agreed he could come home only once the care package was in place so I don't understand what happened. I knew he was against having carers in but that he'd agreed as it was the only way they would allow him to come home so it doesn't make sense that his discharge letter says he refused the help. He says he has no memory of refusing it.

   Anyway he realized he could not manage without help and rang asking to speak to the GP as on the paramedics notes it says they spoke to the out of hours GP about a care plan and that he would pass it on to our GP. He was told the GP would ring him back but when she didn't Don's son David stepped in and rung again. It did the trick as he managed to speak to her and she gave him another number to ring to get the ball rolling for the care plan. A member of The Jet Team arrived a few hours later much to my relief and we worked out the best care plan which includes physiotherapy. He needs this as he's not taking my advice to get out his chair and have short frequent walks up the hall to help build his wasted muscles. This is really annoying me, I'm going out my way to do everything to help him but he won't to anything to help himself. The only times he got out his chair yesterday was to use his commode! So today when he asked me to get his pillow I suggested he got it himself and made a point of not doing it. It worked as not only did he get the pillow he also got his own lunch later. I don't know how long it will take to get his muscles working properly again but the only way is for him to get using them. 

   The carer is here now giving him his daily wash, I've told him the stair lift wouldn't fit but now feel guilty as I know how badly he wants it. But everyone I've mentioned it to agree it's not a good idea. 

    

Sorry to hear your not 'out of the woods yet' . Things must get better 

so hoping that your able to enjoy life again soon. 

  Regards, Eric F.

Hi Lynne n Eric,

Things have gone from bad to worse here - Don has been showing all the symptoms of dehydration again but he won't drink more! On Tuesday I told the nurse that came but she didn't seem to take me seriously. She went in to him, checked his dressings and asked if he'd emptied his catheter bag n when he said he had she didn't even look at it to see what colour his urine is! It is very dark, he's confused, sleeping a lot in the day n feels cold all the time. As the nurse was leaving I told her I can't get him to drink more of either water or lucazade sport n she asked if I'd informed the GP of my fears. I told her I was going to the surgery in the afternoon to request a blood test n then she said she could do the blood test! I'm still waiting for the results, I rang yesterday but they're not back yet which seems strange as they got them within a few hours last time. The nurse that came the following day was completely different when I told her my fears and the first thing she did was check his bag agreeing it is too dark. She asked him if he's drinking lots of water n he said he is, I said no he's not n she warned him, just as I had done that he'll end up back in hospital if he doesn't drink more. But it fell on deaf ears! 

   Not only is he not drinking enough he's also not moving about enough which he needs to do to build up strength in his wasted muscles. He says he does the exercises that the physiotherapist left him in the mornings before I get up but I'm not sure if I believe him!

  Wednesday morning a woman from OT came at 8am, I think she'd spoken to him on the phone to arrange the visit but he hadn't told me and I was still in bed. He told her he is capable of washing and shaving himself but let's the carers do it. She then cancelled the carers! I couldn't believe it - he is not capable of doing it himself, said he doesn't remember saying he is and that its a mistake. If she had read his notes she'd have seen he gets very confused and she shouldn't have taken notice of things he said. When he uses the commode he doesn't even wash his hands with the hand wash unless I remind him! Anyway I rang intermediate care n told them he can't wash himself and was told the message would be passed on. But we've heard nothing since! 

  Yesterday he said he will try to wash himself and he moved the bowl with all his washing gear into the kitchen. That's as far as he got, I asked him several times if he was going to have a wash n every time he swore he'd had one! The bowl and flannel etc are still in the kitchen today unused! 

    He should never have been discharged, he's proved he cannot look after himself - at first I left it to him to empty his own catheter bag but one day it was so full it had pulled the pipe out and he was soaked in urine! He said he kept forgetting to empty it! 

    I'm waiting for his blood test results which will hopefully get him put back into hospital and there's no way I'll agree to him coming home again before he's well enough. 

Sorry to hear the problems continue, l guess there was always a chance they would, its can be problematic with patients who are compliant to the advice of medics, but worse still when theyre not, be it their character or mental state, but ridiculous of the ot to cancel carers based on what he tells her or if being awkward, they should make allowances for that, and no matter who it is we dont always get along with each other, lve had nurses docs lve liked and respected, but quite a few l havent, they can be awkward also, but it shouldnt come into the care you get.  Problem is now it seems if you cancel or they cancel any service it can be long winded gettting it set up again. With my surgery its usually 3-4 days for blood test results, but l think they can mark it as an urgent one and have it done in  day or less, maybe they havent put it down as urgent, Also if it does show problems theyll be studying about a hospital place for him.  l think you probably need to get together with his gp or care providers about a long term solution, might be he needs a longer stay in hospital or care ward till he more mobile and learning to do things for himself where he,s able to.  Its a big problem for all when its often down to their state of mind. Not much happiness for anyone involved.  l hope it can be improved for all of you.  Take care

I went to the Drs surgery this afternoon and told the receptionist how bad Don is - that last night the peas he had for dinner were in the commode within an hour, that he's so confused he asked for a bowl of water to have a wash but only had a shave n then said he'd washed himself! Even when I showed him the soap and flannel were still dry he still swore he'd had a wash! I told her I need the blood results but she said they are trying to send them electronically but only the dr can access them. I told her how he keeps saying he is drinking lots of water but he's barely drinking a glass a day. I also said how the carers have been cancelled after the OT woman took his word that he can wash himself. She said she'd fill the Dr in and ask her to access the blood results and that the Dr would then ring me. She hasn't rung!! 

   This is the same Dr that failed to do the follow up blood tests that she was asked to do on his last discharge letter! I can't believe she didn't ring, especially as it's Friday. I'm now clinging to the hope that a nurse will come tomorrow, they came last Saturday and even Sunday. But I don't know whether she'll be able to find out the blood results, I hope so as we need to know what his kidney function is. His urine is very dark, it's hard for me to keep a check on the amount as tells me he's emptied it but I don't think he has. The first time he said emptied it in the toilet I didn't believe him but then I saw he had as the toilet water was very dark as he wouldn't think to flush it. Today he said he emptied it about 5pm but I know he didn't as I would have heard him and anyway there was nothing in the loo. He said he always empties it in the morning but again I saw no evidence this morning. But when I just emptied it there was only 100ml in it! 

  I texted his son David and filled him in but he texted back saying I need to ring the Dr on Monday! No help there then! I'm too tired to do any more today so all I can do is see what tomorrow brings. 

I don't know what to write, that might make you feel supported?

I'm rarely at a loss for words, just seems that no one cares about you or your husband. In reality of course are these caring services or just people getting as much as possible for as little as possible?  

I don't think anyone ever died from dehydration, just puts the heart under stress 

and fill - in a different box ! To put myself in your shoes, must just be a frustrating nightmare that you have to live through. 

I just hope that for you both, some way can be found for Don to be readmitted soon.

                   Warmest regards, Eric  

The fact that you and Lynne have been here for me means a great deal to me, my mum, daughter and friends are the same in that they just don't know what to say when I let them know what's going on but just knowing you are all here supporting me is very much appreciated. 

  One thing I've not mentioned is the woman from the council has been back (he had an assessment as he needs help with funding a stairlift and wet room). After the assessment a man eventually came and fitted a stair rail and a rail in the bathroom. Then she came again, she saw his bed is in the living room yet said she can't give him any more help until he's shown whether the rails are helpful! How can they be helpful when he can't climb the stairs?! She asked to see him walk across the room (which he only does using his Zimmer frame) and when he stood up I immediately saw his pyjama bottoms were wet and when I checked his catheter bag I found it was so full it had pulled the tube out. This was only a couple of days after he came home and I was leaving him to deal with his bag then. The woman was flapping around asking if she can help but when I pulled his pyjama bottoms down to take them off she made a quick exit from the room embarrassed (he doesn't wear anything under them!). 

   I told her we were looking at secondhand stairlifts but she said not to get one as she would eventually be able to help with funding. Eventually is not good enough as he needs one now, same with the shower but even the bloke who fitted the rails said not to get our hopes up as he's seen people go many months without a shower while waiting for help from them! I don't know how she can do her job, seeing people in obvious need but doing nothing to help them. She also said nothing can be done to help until 12 weeks after the operation date! Who on earth earth makes these rules? 

    Anyway he seems slightly better today, he has been drinking more water and his urine is not quite so dark and has increased in volume and he's not so sleepy so all I can do is watch and wait. No nurse yet but surely one will come as they did last weekend. He's using the commode shortly after he eats anything n I suspect all food is going straight through him. 

As Eric said this is one big frustrating nightmare and I just want to wake up. No nurse has been yet, I don't know what time their working day ends but I doubt it's much after 5pm n I've a feeling no one is coming! It's going from bad to worse as again he asked for a bowl of water, had a shave (of sorts as he missed more than he shaved off!) then said he'd washed himself again! He then got in bed and slept for a couple of hours. When he woke up I told him he needed to wash and change his pyjamas, after arguing he'd already washed he eventually asked for more warm water but then asked for a bowl of soup saying he'd probably spill it on the clean pyjamas so he'd better have it first. When I brought the soup he swore he'd just washed, the flannel was wet this time but he's still in his dirty clothes so he probably just washed his face! The simple truth is he is not capable of having a proper wash! He won't even wash his hands after using the commode, if I'm in here I always give him the no rinse hand wash but the last time he wouldn't use it as he said he's going to have a wash in a minute but then he went to bed! 

   Well there's no much time left before the nurses will be finished for the day so I doubt we'll see one today. As for tomorrow who knows? 

   I find it so hard to believe the surgeon went to all that effort to operate on Don for him to then be left in the state he's in now. I feel so angry that the dr didn't bother to ring yesterday despite all the details I left. I had better help him change those pyjamas as he won't, possibly can't do it himself. 

I'm beginning to wonder if Don's notes have been marked with a big red X telling everyone to ignore him! No nurse came today so I doubt one will come tomorrow either. I'm so tired but when I tried to have a nap earlier my mind wouldn't shut down as its full of unanswered questions - why hadn't the GP accepted his blood results that were being sent electronically? Why didn't she take any notice of the receptionist who said she would get her to accept the results and then ring me? By Monday the results will be a week old and useless as he's continued to deteriorate since the blood was taken but will anyone come to take more blood? Is this treatment, or rather lack of it because he went against advice to come home? Are they hoping, if they ignore us long enough that his kidneys might fail so he'll die? At least I know that won't happen as last time his urine output went right down to nil before he agreed to be admitted. I just emptied his bag and it had 200ml in and it was lighter in colour than it has been which has reassured me he isn't as bad as last time - yet! I tried again to get through to him that he's dehydrated but he insists he's not. So I asked him why he sleeps most of the day and he said its because he can't sleep at night as his shoulder hurts so much. I said his shoulder doesn't stop him sleeping in the day n he said he only dozes. He doesn't though, he's out for the count a lot of the time. We don't know what is wrong with his shoulder, it has been painful for over a week and he's complained to everyone about it but no one has taken any notice. I bought him some heat pads which helped a bit but a lot of the time he's been taking painkillers which is unheard of for him as he normally won't take them no matter how much pain he's in. The heat pads are now all gone n I've been putting hot water on a t towel n putting it in a plastic bag until I can get to the chemist to buy more. So that's another unanswered question - why has everyone ignored the pain he's in with his shoulder? And another is why are his sons leaving me to cope on my own again? It's not because they don't care as I know they do. Andrew rang tonight and I think he asked why the carers have stopped coming, Don said because their time was up n when Andrew pushed him to explain, he wouldn't, said he was tired n rang off. Andrew must have thought that was strange but we've heard nothing more from him! 

    I'm now going to try to quiet my mind and read before going to sleep. I know it's not doing me any good going over these questions but I need some answers. Hopefully Monday will bring some.