Advice needed regarding antibiotics not given by hospital

  I'll start again! It's been over three weeks since Don was discharged n no one has done a follow up! The nurse who was supposed to come before he went in hospital never did come either so he never got his flu jab! 

  I went to the surgery on Tuesday n asked if his urine sample results were back but they weren't. The receptionist said he needs to make an appointment to see the doctor, I explained he is not capable of getting to the surgery n that they normally come out. She didn't seem very happy about this but I left it with her expecting her to arrange it but we've heard nothing! I went again on Friday to ask about his sample results but this time I was told another sample was required. I asked why but she said that's all that's written there. I was so busy digesting this information I didn't think to ask why no one had bothered to inform us! If I hadn't gone in I wouldn't even know another sample had been requested! If we'd been told I could have taken it on Friday. 

  I find it really hard to believe this after the last infection led to septicemia n septic shock. What if he has still got the infection? He certainly still has the symptoms although thankfully they haven't got any worse. That surprises me too as I'm losing the battle to get him to shower and he refuses to listen to me when I tell him how important it is with a catheter. He is very wobbly on his legs n suffers dizziness (I think this could be due to his under active thyroid, no one is checking the tablet strength is right!) and I think this is why he won't shower. Every day he spends all day saying he's going to have one "in a few minutes" but then it gets to evening n he says he'll have one in the morning. He's only had two since coming home this time! We've had so many arguments over it it's affecting our relationship. Sometimes when I remind him about having his shower he shouts at me that he will go when he's ready, other times he will say he had one in the morning n really seems to believe it too. Our last big argument ended with him saying it's his house n he can do as he likes n if I don't like it I can leave! I tried telling him he couldn't manage without me, I do everything in the house n he can't even medicate himself but he said he is quite capable of looking after himself n just wouldn't bother taking any tablets, saying they don't help anyway! He is so infuriating, I know he wouldn't last long on his own but there is no telling him! And he forgets everything we've said (when I mentioned a few days after about the doctor he sent away he couldn't even remember doing it!) but unfortunately my memory is good and I won't forget! He accepts the benefits of being looked after, he was out of order in what he said. 

  But I've been told to not take things personally which helped. I know being so ill for so long is not easy for him. I keep hoping he will improve and maybe in time he will. Fingers xxed! 

Tell you what ....... I wouldn't last 1 day ! Don is lucky to have your support.

Under such a workload you have to find time for your yourself too. 

                                          Thinking of you and Don.    Eric

Thought it was about time I updated as I now have some answers although unfortunately they're not ones I wanted or even expected but they do explain Don's behavior. He's suffering from dementia!! 

   His short term memory has been getting worse and checking my diary this goes right back to 2014. But the fact that his whole personality has changed maybe should have told me as being aggressive and abusive is not something I'd have ever expected from him. Even the self neglect is a dementia symptom, he's gone 2 months without a shower or clothes change and I've had to quit trying to persuade him as he becomes so aggressive and abusive towards me. 

His memory is now much worse, he forgets he's eaten dinner and fails to retain anything I tell him. He gets AM and PM muddled, he came back in the room and asked me what I was doing up "at this time of the morning" when it was 3.45pm! He is impossible to reason with, he has stopped all his hobbies, I found his catheter bag on the floor but he was completely unaware it had come unattached, he left the tap gushing in the toilet, it was so noisy I came downstairs to find out what the noise was but he didn't know he'd left it on, he put his dinner in the oven and went to bed, another night he had one dinner then cooked another one saying it was his first and many other strange things that just didn't add up. 

   So I researched dementia and have no doubt this is what he has. I have no way to get a diagnosis as I know from experience he has to be at deaths door before he'll see a doctor so I have made an appointment for myself for next Thursday and have written a list of his symptoms headed Dementia? to show her. 

   Caring for him is now beyond my capabilities but when I asked his family for help they refused saying there is nothing they can do! When I told his eldest son I'm sure he has dementia he said he had already realized this. In February I asked for a meeting with all three sons so we can discuss the situation but Andrew said he's not available until April! Oh well April will soon be here but I have a feeling by then there will be more excuses and I feel very resentful with his family for leaving me solely responsible for his care. Before Don became ill he used to my carer as I have many health problems including adult attention deficit disorder. So I have no help and support for my own needs yet I've had to cope with Don's needs too. 

   I have been trying for months to get Don a care and needs assessment with Adult Social Care but he refused his permission 4 times. I then discovered I could apply for a carers needs assessment so in February I applied. I then asked Don why he keeps refusing his assessments and he said he has NEVER refused and WOULD NOT refuse if asked! I told him ASC have rung him 4 times and reminded him of their last call (he told them to ignore me as I'm off my trolley and to not ring him again!). He said he does remember the call but did not know it was about an assessment! 

   So I contacted ASC again and they got the GP to ring him and YAY he agreed! I had told them I can no longer care for Don as my physical and mental health are suffering badly, that I desperately need help and asked them how long I'd have to wait for my carers assessment. All I've had since is a confirmation email saying they will contact me in due course! 

  So I went on a carers forum and was told to write to my local MP as then things "miraculously move forward". I did this and yesterday received a reply saying he's written to the Chief Executive of our local council and will contact me again when he hears further. 

   So hopefully we will get the assessments soon. I'll let you know as soon as I hear anything ok? 

                    My heart goes out to you and what you must be living through.

I suppose one could reason that such things have to get worse before they can get better. This is the way that health authorities work, they just want as little effort as possible. Non - intervention is a good excuse for doing nothing, like human rights can cover all sorts of excuses.

I'm a recovering kidney patient, I went down to my surgery to pick - up the prescription; not there, huge queue. "When did you submit request"? "Oh ! At least two weeks ago."  " Well that would explain it , we throw away all prescriptions if they are not collected within ten days, it says so on the prescription form. " " Next!"

" Oh ! pardon me please, could you show me, I have a couple of old prescriptions and request forms here ? " NOT THERE IS IT ?"  Three people then appeared and performed clause analysis on forms to sadly conclude, -- It used to ! Queue now out of building and onto road ! I pointed out politely that without these drugs I'd probably be readmitted to hospital !!!

So your not the only one, but compared to you my problems are of a minor nature ! Regards and sorry that I don't write more often.  E. x

  Thanks for your support, both of you, it means a lot to me. 

I realise now I went wrong when he came home after the bowel obstruction, both his family and I just took it for granted that because I live with him I'd care for him. He'd already been ill for 9 months before that, 3 of those he spent violently vomiting what turned out to be faecal matter that couldn't go down but he refused to accept medical help. He was then admitted 3 times with dehydration and kidney failure each time only accepting help when to not do so would have resulted in his death. Looking back I think the dementia played a big part in this refusal to accept medical help. 

  Hindsight is a wonderful thing and had I known Don was not going to get better and I was to cope with no help or support from his family then I would have done things differently. But I expected much more from his family and never would have thought they could refuse to get involved in Don's care. 

  A couple of months ago my daughter asked me to stay at her house for three weeks to care for my two grandsons aged 11 and 17 while she and her husband went to Australia, taking my six cats with me. I rang Don's daughter in law to ask if they would come daily to medicate Don n keep an eye on him but was shocked when she told me to ask the district nurse to do it! I told her they don't do that so she said she'd talk to all three sons n get back to me. She never did! 

  In the meantime I tested Don by stopping doing the dishwasher, washing, his bed etc. I offered to show Don how to set the appliances but he refused saying it's not rocket science. I'd stripped his bed as his catheter had leaked n left it stripped. After three days we were out of clean utensils, he'd slept in his stripped bed and he'd run out of clean clothes (his catheter had leaked twice more) and the washing stank so bad I put it out in the shed! When I asked Don why he hadn't done the dishwasher/washing he said he didn't know he had to!! By the third day I was in tears n spent it catching up on the build up. 

  So I realised Don couldn't be left for three days, never mind three weeks n I had to tell Emma I couldn't go. Thankfully she understood. 

  But I don't understand! Two sons live close by, both have wives and teenage kids so checking Don could have been shared between them all. 

  The meeting I asked them for is long overdue, it should have happened long ago but I admit I'm not looking forward to it as I feel so bitter towards them, which I will need to hide. 

   I think I probably mentioned in my posts months ago that I am concerned as Don's bowel movements are still abnormal. Nothing's changed there either, they are exactly the same now as they were for 9 months before the bowel obstruction! I have told several of the GPs at our practice, one in a letter amongst several other health concerns but no one has taken any notice except one locum who did take me seriously and came out to give Don a rectal examination. But Don refused this telling him he is perfectly fine, goodbye! The doctor had no choice but to go, extinguishing the tunnel light for me! Amazingly he hasn't had ANY follow up hospital appointments since his stoma reversal in July and this is another of the health concerns the GPs have done nothing about! Another is that he's stopped using his glaucoma eye drops yet had no eye appointments either! He had a cataract pre op in November but has still not had an appointment for the cataract removal. And his hypothyroidism, diagnosed in October still hadn't been monitored come February. I mentioned just this one on my carers assessment form and lo and behold the surgery rang requesting his blood the day after I submitted the form! He said he will go give blood when he's ready n refused to accept an appointment! So they sent a district nurse. 

  Another of the dementia symptoms he's got is overeating, he eats constantly day and night and since starting this his BMs have deteriorated further, he goes at least 6/8 times a day and they all float n are hard to flush away. I can't help wondering if he's building up to another bowel obstruction and I hope I'm wrong. Only time will tell! 

  Yes Lynne, having carers in seems to be the only answer. I've asked him this before but he refused! And no doubt he will refuse again when we eventually get the assessments. But I cannot continue caring on my own, all I can hope is ASC will somehow convince him he doesn't have a choice. He's deluded into believing he's fine n doesn't need any help but he's not showered, washed or changed his clothes (which he also sleeps in!) for a month and his clothes are covered in food and port stains. He's taken to drinking port lately but now a full bottle only lasts him a day! I had decided not to buy him any more but then I decided to try using it as a bargaining tool to persuade him to reduce his cigarettes. I am asthmatic plus I suffer a lot from heartburn (caused by my hiatus hernia) which smoke aggravates, he won't smoke when I'm in the same room but as soon as I go to bed he starts n has smoked as many as 30 overnight. Thankfully he has cut down to around half that now but that's still too many as it rises up the stairs to me. So I won't be buying him any more port, when I told him he said he'll go get it himself but he only goes out once every two months to stock up on 1000 cigarettes. 

  I didn't intend this post being so long, sorry I got carried away! 

Eric, I hope they sorted you out with your medication that day, unbelievable what they said and I'm so glad you caught them out, good for you. What the hell is happening to our NHS?!

Yes we're all from the UK, where are you from?

Our health service may be free but it's really gone downhill and I have a fight on my hands trying to ensure Don gets the proper medical treatment, a fight I could well do without! Caring for Don has really opened my eyes to the mess the NHS is in. 

Yes he has always been stubborn to a degree but it's the dementia that's causing a lot of his problems and the thought that things can only get worse fills me with dread. But we're waiting for needs assessments from Adult Social Care and hopefully I'll get some help soon. 

I had to go looking for your post, I received notification of it but for some strange reason it wasn't put at the end of all the other posts and while I was looking for for it I also found two other posts from you so I'm sorry I hadn't replied before. 

Are you a carer? It's hard work and the most stressful job ever, I had no idea what I was taking on what seems like a lifetime ago. I was writing a list of my needs for the assessments and I wrote I need my uncomplicated life back. Not a chance it'll happen though! 

                       Did reply, but lost letter.

I often wonder what help carers are supossed to provide?. Half an hour just doesn't provide any chance for discussion and support. Even if they are really super - people what difference can someone do in less than half an hour ? Everyone knows it's just a combination of comedy and sticking plasters.

Had personal experience of this in my mother's final years.

          It may be that you are coming to ther end of the road in terms of caring for Don ? You may need to speak to Social care or someone who can outline some possible pathways as you can't take on permanent nursing job without help.

Dementia, can be very quick. There are of course many different types  .

I really wish there was something that could be done to help.

I read what was said about family assistance ! And of course it's so common , 'where there is a will there is a family.' !

Had a lovely day yesterday taking a 9 year old and six year old around a country house, Of course, I'm totally wrecked today.

                                                 Regards, E x

  Things deterioted greatly over the weekend as Don keeps forgetting to do up his catheter bag resulting in wet clothes and bedding. i had stopped trying to persuade him to shower as nothing works but he smells so bad I spent the last 3 days trying again, without success and every time I mentioned it I got a mouthful of abuse from him! In desperation I tipped a bucket of water on his legs to try reduce the smell! This did not go down well as you can imagine, he grabbed hold of me and smacked me across the head and in trying to get away from him I've scraped some skin off his arm! 

  I emailed the woman, Jacqueline who assessed me and told her I need help desperately and this morning I got a call from Adult Social Care to ask if tomorrow morning is ok for Don's assessment. You bet it is! 

  Don has twice put his wet trousers on the radiator instead of in the wash basket and a few minutes ago I opened the cupboard and immediately smelt stale urine as he'd put a dirty pair in with his clean ones! The whole house stinks of urine with the majority of it coming off him, it's overpowering but he still won't shower! The jumper he's wearing he's had on since the end of February, it's filthy and covered in stains but as he also sleeps in it I can't do anything about it. He's had the pajama top on for the same length of time! 

  The only way his catheter can leak is if he forgets to do up the switch and he's forgetting so often now it's obvious he can no longer look after it himself. I know he wouldn't let me do it and to be honest I'm not prepared to take on the job as I've had enough of the whole situation, I know he's like he is because of the dementia but it doesn't make caring for him any easier and I just can't cope. 

  His 3 sons won't help, I asked them to come in to medicate him and check him as I needed a break and wanted to take my cats and stay with my daughter for awhile but they told me to ask the district nurse to do it! I texted his eldest son last night to ask when we can meet up to discuss everything but he hasn't even answered me! 

  I have no idea what ASC will be able to do but they HAVE to do something as I can't live like this. 

                      Felt like shouting......... "well done!"  When I read your last letter.Or ...'Da Iawn'..................... as posh folks say around these parts.

No one can say you didn't take the proverbial bull by the horns and wack some sense into the situation. Or let the dog see the rabbit perhaps ? I'm sure society will just ignore the situation and let you bear all all the strain if you were willing to let them.

My mother was in a home that was a television programe. Eventually the police came in and took the home over and arrested all the staff and management . But I'm sure such oranizations just open elsewhere under a different name.

               Be proud of yourself ..............   E x

  Don had his assessment today but it didn't go well, Don lost his temper, banging his hands on the arm of his chair and shouting that he just wants to left alone! The bloke, Chris couldn't get out of here fast enough although the horrific stench of urine probably also had something to do with it! He admitted he doesn't know what can be done and said he's got to speak to his manager. He said there was no reasoning with Don today - I said there is no reasoning with him any day, you cannot reason with someone who has dementia as they have lost their reasoning skills. He was only here for 20 minutes and in that time every time I spoke Don told him not to believe anything I said. He told him he showers every day which he believes he does but obviously Chris knew this isn't true. He's wearing a cream cricket sweater that's he's worn 24/7 since 28th February, it's absolutely covered in food and port stains and the sleeves are black. 

  Chris said he would come back, I gave him my email address as I have a phone phobia and he's already sent me an email but it was just a test to make sure the address is right. 

 I contacted my daughter to fill her in on the assessments and told her if they don't do something to end this nightmare then I'll be taking her up on her offer to take my six cats and go stay with her. She said she's away from16/25th April and the kids are staying with their dad so I'd have her house to myself. Perfect. My cats are not used to kids so this will make it much easier for them, it's going to be hard on them to be wrenched from the only home they know and one is 14 years old, has kidney disease and won't be with me much longer so I was hoping to avoid going. But if ASC don't do something by the 15th April then we're out of here. 

  Don is not capable of medicating himself, he told Jacqueline he hates tablets and won't take any if I wasn't here. He's on one for his stomach and another for hypothyroidism. But this will not stop me going, he stopped using his glaucoma eye drops months ago but no one takes any notice when I tell them so I doubt anyone will care he's not taking his tablets either!  His family certainly don't seem to care and if I go I've decided not to bother telling them. 

  I've thought about what you said about society just leaving me struggling if I let them and how right you are so I have to make a stand. I started to reply to the test email Chris sent but have saved it as I can't decide if I should tell him my decision to go to my daughters if nothing is done by the 15th April or whether to wait and see what he comes up with. What do you think?