Advice needed regarding antibiotics not given by hospital

                    This is obviously a most important matter and to be honest I'm worried about my answer or not answering , so for what it's worth here goes. !!!!!!

If we were to compare your relationship to a husband to that of a parent to a child or a child of any age caring for a parent.  how does; 'Society' differ in their interaction with those relationships ???

I know someone who is social worker and deals with this type of issue . It seems odd to me that you don't mention a social worker in connection with this matter. Obviously I know nothing about your situation apart from what you have shared in these pages . As a last ditch matter I hope the social services will be aware of your intentions later in the month ? You cannot be responsible for the failures of social services. I'm certain many other people face this sad situation  and don't know where or how to turn for help. Many people are unpaid carers and when the cost falls onto society, people start shouting, although this matter has always existed. 

Please, don't stop posting . But the cold truth is you have to care for yourself too.    Sad to hear this, but happy for you too.  E . xxx

  You both mention social workers and I hadn't given it a thought but no Don has never been assigned one! Eric please will you ask your friend if Don should have had one? It would certainly have made things easier for me as the hardest thing has been having his health and care entirely on my shoulders. I don't know how these things work, would one have just been assigned or would they have asked him first? If they asked him I have no doubt he would have refused as he does anything that would help him! 

  He's not too good today, says he feels really weak. No chance of him showering again then! 

  I can't remember if I have mentioned this but since Don's stoma reversal last July he has had no follow up hospital appointments. I have told several GPs and his family and anyone else who'll listen but no one has looked into this, no one seems to care! And since the reversal his bowel movements have been exactly the same as they were in the months leading up to his bowel obstruction, very frequent and they all float which I know is abnormal. But he refuses to see a doctor and the only doctor who took notice came out to give him a rectal examination but Don refused to let him! Everyone else I've told have just ignored me! 

  I asked my daughter if I should tell Chris about my decision to go to hers while she's on holiday and she said I should. He replied to my email this morning but he didn't mention it, he said he's out of the office until 11th April and will email me when he gets back. 

  So I've just got to get through the three days and then I'll know if they're going to do anything. It's highly unlikely anything will have changed, Don doesn't shower on good days so with him feeling so weak I know there's no chance. Maybe another bucket of water is in order? But I want to buy a lock to put on our toilet door first as then I can run and lock myself in there to prevent any more physical violence after I've thrown it! I'll get one when I go out tomorrow. 

  I've got to take one of my cats to the vet today as he keeps throwing up. I'm not looking forward to it as last time I took him he cried the whole hour and a half we were there! 

                  He said for you to ring your local Social Services number and to request some help. Obviously this looks a little strange because I don't know what area of the country you are living in ! !! Arrh

The situation looks really stranger still when Martin started asking questions . !! I found I had no answers. He was nonplussed that nothing has been done via the carers or the hospital. So do the hospital arrange the carer package ?

                                        Eric !

  Anyway he then said he's arranged a visit with his colleague on 12th April as the OPMHT are questioning his mental capacity and while the test takes more than one visit she is going to assess him and see if they can find a way forward. 

  But it was the last sentence that put a smile on my face as he is going to contact one of Don's sons so that he's aware. YAY! I feel enormous resentment towards Don's sons as they have not only refused to get involved in their dads care, they don't even bother replying when I texted them! I've given up trying as it's obvious they don't care that I've been living in a nightmare! 

  I feel it was probably me telling him about going to my daughters that brought about the change of heart as they know Don is not capable of looking after himself if I go. Also without me here to open the door Don might not even let them in! 

  Took my cat to the vet and he's had an anti sickness injection, he's got antibiotics and special food and she also found he'd got a wobbly tooth that was so loose she pulled it out with her fingers. He's still got to have a dental but they were fully booked so I've got to take him back. Just like last time he cried the whole time, from when we got in the taxi to home again! I'm not looking forward to taking him back!

  Don has never been assigned a social worker but Adult Social Care, who done the assessments are social workers although Chris admitted in one of his emails that he is not fully qualified. I found this unbelievable, why the hell would they send someone whose not qualified when it was obvious the case was extremely complicated? 

  I live in the Peterborough area by the way. As for the care package you mentioned, he did have one when he came out of hospital but that ended within a few weeks. The hospital were supposed to arrange it but failed to do it! The GP then put it in place but to be honest it was as useful as a chocolate teapot as the nurses that used to come refused to take my concerns seriously, I knew something was wrong but they did nothing, two of them told me they would pass my concerns on to the GP but when I eventually contacted the GP she said no one had tol her anything! The GP sent in a team called the Jet Team and they diagnosed a severe UTI which they said he'd had for several weeks!

   The only person he's seen since then is the district nurse when she comes 3 monthly to change his catheter. Pointless asking them to help, they don't want to know! 

 I said the nurses on the care package were useless but he also had carers come in to wash him as he was unable to climb the stairs at that time and they were very good. But once he was able to climb the stairs they were then cancelled. Unfortunately being able to climb them didn't mean he did and he's had very few showers since then (this was last summer) with each one being less than two minutes long! 

  Anything you want to know please feel free to ask. I can understand why your friend finds it hard to believe we haven't been given any help, I too find it unbelievable. I should never have had to care for him solely on my own but I haven't had a choice. I have a history of depression and breakdowns although thankfully I've been well for the last 12 years. Even so even I'm surprised I've coped as well as I have but I can honestly say the last two years have been the hardest and most stressful of my life. Because of my history and because I have adult Attention Deficit Disorder (ADHD but without the hyperactivity) I am classed as mentally disabled. I receive Disability living allowance and severe disability living allowance and I read on the net you have to be 80% disabled to get this! It seems impossible that I have been left to care for someone as ill as Don has been. 

  I had no idea I could get help until November last year, I emailed an organisation called carers.org for advice and they told me to contact Adult Social Care to get us both assessments. It has taken this long as Don refused to give his permission the first four times, finally agreeing the fifth! 

  Thanks Lynne, just shows you how my brain is mashed as it hadn't occurred to me that I can let the MP know if it doesn't go well! But I definitely will do. 

  And if it doesn't go well my daughter will fetch me and the six cats on Friday. I'm praying it doesn't come to that though as the list I've written of everything I'll need to take is enormous! The cats will need litter trays, several bags of litter, wet and dry food, bowls, beds, grooming tools, their loc8tor, and of course some toys. I'll need clothes, my pillow, all the foods I have to eat because of my heartburn, even shampoo and shower gel as I can't use normal ones due to my eczema, all my tablets n inhalers, my iPad, my e cigs and e juice n no doubt I'll think of loads more in the next few days!   I arranged with the pharmacist yesterday to pick up ten days supply of my ADD meds next Friday, it's a controlled drug and I normally have to pick it up twice a week. 

  I thought I'd have to take my cat back to the vet today as he wasn't right yesterday, i had a really busy day though and didn't notice until last night. He was hiding under the bed and wouldn't eat and didn't purr when I stroked him. I rang the vets this morning but I'm still waiting for a vet to ring me back! They shut at 2pm but I took him up some food and he ate most of it so I'm not too worried now. Maybe the antibiotics just need time to kick in as he's only had two so far. 

  Don's not too good again today, has been in bed most of the day saying his tummy is upset again. I long for the time when the responsibility is off my shoulders, it's been an impossible task trying to care for him and can only be described as one long nightmare for me. 

  Like you I cannot understand this thing about social services needing permission before they can visit. It's what held up his assessment as he refused 4 times but then said he hadn't refused and wouldn't if he was asked. The fact that they'd phoned to ask him 4 times and he hadn't known that that was what the calls were about says a lot about his mental capacity.   

  Yes I do know about carers allowance, before he became ill Don was my carer but neither of us have ever applied for it as whatever they give you they then take it off your benefits so it's a waste of time! 

  The vet just rang and said to keep a close eye on him and if he's still not right to take him back Monday. I hope I don't have to though as, as well as Chris coming back Tuesday I've also got a dentist appointment on Tuesday and a doctors appointment on Wednesday so I am gonna need Monday free to get some packing done as I don't want to leave it all until the last minute. Fingers crossed I won't need it and end up unpacking it again. 

There is no point in carers making themselves ill. Just makes more work and worry for everyone concerned . I hope that this will be a time when murky waters become clearer and at least you can look upon a future with some direction and sense of choice and purpose. Whatever happens it's your life and you have to make your own choices Please take a period of peace , write and let us know how things work themselves out   E x

  Yesterday was a waste of time, Helen was supposed to test his mental capacity but she only spent ten minutes talking to him, only asking him if he can look after himself to which he obviously replied he can, that he doesn't want any help and just wants to be left alone. She told him the reason they were here was because I had contacted them to say he's not looking after himself, he shouted that he is and that they mustn't believe anything I say. He then repeatedly told them to check my medical records, I've got a history of depression and breakdowns and have adult Attention Deficit Disorder and am classed as mentally disabled and Don was implying that I'm not right in the head! They ignored him but I will never forgive him, my medical history has nothing to do with this apart from the fact that a mentally disabled woman should never had the sole responsibility of caring for someone as ill as Don. 

   Don lost his temper several times, said he showers every day and kept repeating he just wants to be left alone and kept telling them goodbye so we then went outside to discuss it. Don's son also came but he was no help. Helen told me that Don knows what he wants which proves he has got mental capacity!?! 

  When I mentioned the dementia they asked if he's been diagnosed, I told them he refuses to see a doctor so I can't get a diagnosis, I said I had spoken to our GP who told me I had to get Don to go and that she would have everything ready to test him including a blood test. They then said a GP cannot diagnose dementia, that he'd have to go to a special clinic!

   They then said they think he has depression, not dementia!! Even Don's son said the same so I told him that Andrew, Don's eldest son also said he's noticed he has dementia but everyone chose to ignore this! They refused to believe he has dementia and nothing I said convinced them! 

  They said there is nothing they can do, they don't agree he can look after himself but have to respect his wishes to be left alone. 

  So I told them I'll be taking my cats to my daughters for ten days on Friday and they agreed I should go. I asked if they will be coming to check on him, they said no but his son said he and his brother will come. 

  I can't believe I have to leave him on his own in order to prove he cannot look after himself but that's exactly what I have to do! They asked if he does any of the shopping and I said he doesn't, he won't use a computer (when he went to buy his cigarettes last time we needed bread and t bags but he forgot the bread n said he didn't know we needed t bags!). What I should have said is he doesn't do ANYTHING in running the household, I have to do it all. 

  These people have spent no more than half an hour with Don, how the hell can they say he has depression, not dementia? I let them read my list of Don's symptoms but it made no difference. Depression does not cause the severe short term memory problems he has, does not change a person to become aggressive and abusive, does not make you impossible to reason with or prevent you retaining most of what's said to you. You don't frequently forget you've eaten dinner, forget to put your trousers on when you go out or get AM and PM muddled up. Yes depression can cause self neglect but not to the point of going two months without showering or changing your clothes and it certainly doesn't cause you to believe you do still shower. 

  Jacqueline, the woman that did my carers assessment was here a couple of hours and he asked her at least 5 times if he'd offered her a cup of tea and she agreed I'm probably right he has dementia. Obviously these people don't interact with each other! 

 They all saw and smelt him, he had his filthy jumper over a pajama top that he'd worn 24/7 since 28th February when Jacqueline came on 1st April and still had it when they came yesterday the 12th. He's been nowhere near the bathroom in all that time! 

  They are making a big mistake, Chris admitted he's not a fully qualified social worker and Helen obviously had no idea how to test for mental capacity. They assessed him without bothering to find out all the facts of the situation, anyone knowing these would never allow him to be left alone for ten days. But that's what going to happen as I have to make a stand, I cannot cope and have to remove myself and my cats. What I'll find when I come back I dread to think and hope his sons will visit often. Once they've spent some time with him they will realise I have not been exaggerating and they will know he has got dementia. 

  What an excellent point you made, yes Alzheimer patients do always retain that part of their brain, I hadn't thought of that, thank you. 

  I feel so angry that these people could spend half an hour with Don in total and then tell me he has depression, not dementia! And then for his son to agree with them topped the lot! It seems his sons don't talk to each other as Andrew told me he'd realized Don has dementia yet he obviously hadn't told Christopher! 

  If any of his sons had bothered to spend any time with him then they would know he is not depressed but has definitely got dementia. Andrew realized just by his phone calls to Don but the two that live close have rarely rung him in the last few months. How dare Christopher say he hasn't got dementia when yesterday was the first time he's seen or spoken to him for months! I'd also spoken to Christopher's wife in February and told her about it. That was when I asked if his family would come medicate him as my daughter had asked me if I would spend 3 weeks at hers to look after my grandsons while she and her husband went to Australia. She told me to ask the district nurse to come do it, I told her they don't do that so she said she'd speak to all 3 sons and get back to me. She never did! I then tested Don by not doing the dishwasher or washer and I stripped his bed and didn't make it up. After 3 days we'd got no clean utensils, the washing smelt so bad I had to put it out in the shed as Don's catheter had leaked several times and he'd spent 3 nights sleeping in his bed unmade! When I asked him if he was going to do the dishwasher and the washer he said he didn't know he had to! I'd explained it to him and offered to show him how to set them but he said its not rocket science yet he'd completely forgotten we'd had the conversation! I realized then Don couldn't be left 3 days never mind 3 weeks so I had to tell my daughter I couldn't go. 

   But this time I am going to my other daughter's, I don't have a choice as no they aren't going to do anything, they didn't even talk to him about respite or carers coming in! 

  I'm dreading having to take the cats from the only home they know, one is 14 years old, has kidney disease and will not be with me much longer and I really hoped I wouldn't have to upset her in her last week/months of life. Another cries the whole time when we go to the vets and I know he will cry constantly on Friday. But we have to go as there is no other way to show them what I've been telling them, he can't look after himself. Don has done nothing in the house for almost 2 years, he never cleans up behind himself, if he spills anything he just leaves it. He doesn't notice when his catheter leaks, I bought him a special plastic mat for in front of his chair and even if there is a big puddle built up on it he fails to notice and then trails it through the house and into his bed. If his catheter leaks while I'm away which I'd be surprised if it doesn't as he constantly forgets to do up the switch, then I dread to think of the mess I'll come back to. 

  All I can hope is his sons do keep a close eye on him. The thought that they wont n so won't contact Chris terrifies me. I can't continue caring for him when I come back and if the worst does happen I may have to stay at my daughters for longer. I'll still post as I'll have my iPad with me.