karened50 Posted September 29, 2012 Author Share Posted September 29, 2012 I knew it would'nt last ! what an awful day yesterday, went to lunch with a friend, whaen i got home there was a msg to contact the hospital, they said jim was being unco-operative, undressing and taking his bedding off, OK so thats a reason to phone n leave a msg that had me scared to death till i spoke to them, i think they are starting to be petty cos i have told them i am not happy with jims care. so i went in and the curtains were around jims bed, he must have recognised mt footsteps as before i even got to his bed he opened the curtains lol, i looked at him and was so shocked, he was sat on the end of the bed starkers, no bedding on just the mattress, he was shivering with the cold, he was absolutely soaked in urine so much that it was running off the bed onto the floor where there was a big pool of it, if he had tried to stand up and get into his wheelchair ( even though i have told him not to do) he would have slipped. i felt like crying but kept my cool, before i went to see the sister i washed n dressed him and as i am doing it i am telling him what i am doing and what i am going to do next, he was very amenable, he was blue with the cold and had all red marks on his bad leg his foot was like ice, no urine bottle for him to use anywhere, drink bottle empty, i then sat him in his chair whilst i went to see the sister. i asked her have you seen the state of my jim, how long has he been like that? yes she says he been like that most of the day, hes not being co-operative with any of the staff, he has been aggressiveto 2 members of my staff and wont let us do anything for him, hes refused his tea, ermmmm exscuse me my jim cant say "no". i said well i have just been in and hes not been aggressive to me he let me get him washed n dressed no problem, yes she says hes like that with me, so why did you not see to him if hes ok with you? i am furious, i'll be in in a minute, that minute always seem to last forever. i went back to him and he was still sat in his chair with a big smile on his face bless him. i washed and made his bed him watching me all the time. the visit went well after that and he was once again nice n warm, NEW WORD OF THE DAY FRAN. Thats his brother, seems were on names this week. half an hour before i left he wanted to get back into bed which i will admit i normally let him do himself with my help but he was a bit unsteady on his feet so i asked the nurse to get his rota stand and help him into bed, you'v guessed "in a minute", after 10 mins in which jim kept trying to get into bed i asked them again to help him into bed "let me just get someone to help me" by this time visiting time was coming to an end so i drew the curtains around hin n we did it together. for the whole of 2 hours that i was there not 1 nurse or carer came anywhere near us, what would have happened if i had'nt cleaned him and his bed. on my way out i said to the carer you dont need to put jim in bed i have done it myself, "thank you" she said i felt that she was being sarky. i am so angry i am dreading going in tonight to what i might find. who do i complain to, even the sister on the ward does'nt seem to care,(that was the one that i spoke to when i first went in last night) if they cant handle the way jim is surely he should be put onto another ward that can cope with him, he cant be the first patient who has had a brain heamorage and a stroke, i think they are used to dealing with elderly patients who are happy enough to stay in bed to rest jim is'nt hes a hard working 48 yr old male who has had so much taken from him with this terrible thing that has happened to him at least leave him his dignity for gods sake. thats my moan of the day over. on a more positive note at least they can see that he is brilliant with me and i wont have a problem seeing to his needs when he gets home. just having my new kitchen fitted today, that was a job that jim was doing before he was taken ill, its been a nightmare for the last 3 months not having a proper kitchen, i had no cielings in my kitchen and hallway, no electrics, no plumbing, he certainly got out of the way at the right time did'nt he ha ha. cant wait to be able to cook n wash in my newbie bye for now karen:frown: Quote Link to comment Share on other sites More sharing options...
Super Mario Posted September 29, 2012 Share Posted September 29, 2012 Karen contact PALS for the hospital area as a matter of urgency, this cannot be allowed to go on. They will help you complain or even do it for you and get some answers. http://www.pals.nhs.uk/ The one time I used them I found them to be very good. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted September 29, 2012 Share Posted September 29, 2012 Karen, that is absolutely shameful. I remember reading a similar story on here not so long ago but I'm sorry I can't remember who posted it or on which thread. As a starting point I would suggest asking the nurse in charge who you can make a complaint to outwith their particular ward when you go in next (i.e higher than the ward sister, she is accountable to someone). You don't have to explain to anyone on the ward what your complaint is and it'd probably be better not to and leave them worrying anyway! Perhaps that will remind each one of them of what their so called caring role is out of fear that it might be THEM you are going to complain about. As you say, Jim can not be the first brain injury patient they have come across and there is no excuse for him to be left in that condition. If a particular member of staff gets co-operation from him, then she needs to attend & identify others who Jim can also relate well to for when she is too busy or not on shift. My own personal experience is that you get nowhere trying to be polite & reasonable with the people involved & believe that the only way forward as a carer is to go as far above their heads as you can. Good luck Karen and try to enjoy your new kitchen if you can. I'm sure Jim will be very pleased to know he has one less job to do when he's feeling better Michelle xx Quote Link to comment Share on other sites More sharing options...
paul99 Posted September 29, 2012 Share Posted September 29, 2012 hi karen im shocked but not surprised when you go in tomorrow demand to see the chief excutive on the ward also the director of nursing on the ward this cannot continue all that happened should be written within his care plan on the ward dont take no for an answer if they dont appear i would ask for the chief of the friends of the hospital and you could write a letter to the care quaility commision i know its more work for you but you should hold the director of the hospital to account this shouldnt hapen but you need to concentrate on jim im sorry take care Quote Link to comment Share on other sites More sharing options...
Daffodil Posted September 29, 2012 Share Posted September 29, 2012 Karen. Poor you. Poor jimmy. This is shocking and cant go on. There's good advic here already from Paul, Michelle and penny. Definatly try PALs they should Be able to help here. In the NHS standards http://www.nhs.uk/NHSEngland/NSF/Pages/Nationalstrokestrategy.aspx for stroke care it says 'people with stroke need to be treated by a skilled and competent workforce.' ....hmmm I think you must go back to the sister and detail your experiences and justified concern. Write it all down before you go as its easy to forget when you are there or be intimidated. make it clear you are not someone who will tolerate this any longer.You will need to badger them, shame them if needed, remind them of their duty of care and I, like paul would report it to the director of nursing. A call to the press office to talk of a "friend at the daily mail " interested in pictures of this care might seem underhand but willmake them pay attention... I had times when I had parents and in laws all battling against shoddy nursing. Some are amazing, some are not. I know Its the last thing you want to do right now but take heart, you are not alone and this is a battle worth fighting. the phrase "in a minute" sends shivers down my spine , it often never came, so you wait, and wait, and I was lucky that most times I could rally against the system myself, hard though that was. For Jimmy he can't right now , no wnder the poor chap takes his clothes off. Its his way of saying will someone please pay attention. so keep on telling them you expect, no demand, of their care standards. He can't tell them and they're obviously not watching to see what he's trying to communicate in actions. Huge hug. Good luck Quote Link to comment Share on other sites More sharing options...
Winb143 Posted September 29, 2012 Share Posted September 29, 2012 My Al would not leave me alone in hospital, He and my daughter did mornings then others did pm's .. I asked my Al if I was left in pee/wet bed his answer was "Yes Win" !! Bad isn't it Karen !! I do not remember a lot, glad I cannot as I always thought Hospitals were supposed to look after us ??? I got better once I was home and shunt fitted...I remember tapping my feet and thinking if I can tapdance then I can walk lol Did not know my legs would be so weak..so Al went and got me a zimmer frame, then Christmas 2011 a walker with seat. When back hurts I can sit down as Physio peeps did not want me as I used to wet myself lol could not make toilet in time. Keep your chin up Karen and hope he comes home soon. Love to you both and you can do it xx get him home xx WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
Jane Posted September 30, 2012 Share Posted September 30, 2012 Hi Karen. Sorry to hear that you and Jimmy are having such a hard time. I've had a couple of thoughts while reading your posts. I hope you won't be offended but in the past I have worked a bit with children with communication difficulties. They used to have a set of small laminated photos of things that they could point to to indicate what they wanted. I wondered if this might help Jimmy while he is getting back to talking and communicating like he used to. So for instance you could have a set of photos showing a toilet/ bath /shower/ razor/ bed/ drink/ different foods etc. Then Jimmy could just point to the thing he is wanting. I feel this could reduce frustration for him. It must be dreadful to not to be able to communicate - no wonder he gets annoyed with people. Another thing we used to do was use the Somerset Total Communication system: http://www.somerset.gov.uk/irj/public/services/directory/service?rid=/wpccontent/Sites/SCC/Web%20Pages/Services/Services/Community/Somerset%20Total%20Communication It was developed for stroke victims if I remember correctly. As well as diagrams there were also physical signs that made things easier such as a 'thumbs up' for yes, rubbing the heart for 'sorry' etc. I hope this makes sense! I just wondered if this would help you both. Thinking of you and hope everything goes well. Quote Link to comment Share on other sites More sharing options...
karened50 Posted September 30, 2012 Author Share Posted September 30, 2012 Thank you all for your advice and sympathetic words. i wish the weekend staff were on all week, jim has been so well cared for this weekend. one of the male nurses CAME to me tonight and told me how well he thinks jim is doing, he said he slept really well last night until 5.30am and he settled him back down again, put some music on his cd player very low and put the earphones on jim and he fell asleep again with the music on till 8.30am, this is the longest he has slept in 3 months. its 3 months today since jim had his heamorage, it feels as if sometimes its gone so fast but at other times so slow, cant believe how much are lives have changed. i tell jim are lives have changed but they will just go in a different direction thats all. my daughter in laws twin sister came round today, she is a nurse at christies hospital, Rebecca (thats my daughter in law) had been telling her sister (Rachel) how jimmy is being cared (bein the operative word) for, she was furious, she came round and took a lot of notes from me asking me things that had gone on, names and times of nurses and carers on duty, she is going to write an email to PALS for me, she said this is neglect and if someone came into my house when i am caring for jim and saw me doing things that had been done they would say i was not fit to look after jimmy. she said dont say anything to the staff at the moment until PALS get involved and then if they carry on neglecting him to let her know and she will then get in touch with them by phone and also contact The Manchester Evening news which is our local paper. the hospital concerned Tameside General has very bad reports and is always in the papers for 1 reason or another. Got the nurse that was on last night to show me the behavioural chart they are filling in for jim, they are being ever so choosy what they are writing on it not a single word about how he was on friday night when that horrible incident occoured so i asked him to give me a chart (which was put in jims folder at the end of jims bed but went missing SURPRISE SURPRISE) and i made sure i wrote it on that and will be checking every day to make sure its still there. think i need some sleep now, had my little grandaughter last night, ellie jane, 3 yrs old and such a cheecky monkey, she was sat on her grandads new riser chair all day saying tell ga gad ellie likes her new chair, apple of mine and ga gads eye that one, nearly lost her when she was born weighed just 3lb and was in intensive care for a long time. Her mummy had another little baby 4 weeks ago libby rose and she is just as adoreable, ga gad got to hold her at just 2 days old as they were in the same hospital, he understood as well tears streamed down his face, lots of pics taken for him nite for now, hope your all feeling well karen x Quote Link to comment Share on other sites More sharing options...
Super Mario Posted September 30, 2012 Share Posted September 30, 2012 Karen, it is good that someone is going to take your issues to PALS for you. You have enough on your plate without having to contend with complaining as well. I hope that Jimmy's care will improve and those responsible for the neglect will be taken to book. Keep your chin up, Jimmy is improving, albeit in baby steps, but that is how it goes. May the improvements continue. Quote Link to comment Share on other sites More sharing options...
Sandi K Posted September 30, 2012 Share Posted September 30, 2012 Ditto what Penny says. Thank goodness you've got someone who will take this on for you so you can use your energy for caring for your husband. It's shameful how those staff are behaving. Sandi K. Quote Link to comment Share on other sites More sharing options...
Daffodil Posted September 30, 2012 Share Posted September 30, 2012 Headphones are a great idea , I couldnt sleep without those or ear plugs whilst in hospital. That's a caring nurse to think of that. There are always more good eggs than bad. Sleep well. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted October 1, 2012 Share Posted October 1, 2012 Karen I am also so pleased to hear that someone can deal with the complaint for you. It's just too hard to try & do everything yourself while Jimmy is your main concern. Good luck and hopefully the rise in his standard of care will be very, very quick. Michelle xx Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 1, 2012 Share Posted October 1, 2012 You go get em gal. lol Glad he had good care weekend now lets hope they pull their finger out weekdays ! Keep your chin up and look back to when he was first taken ill ..they maybe small improvments but Jim is heading the right way ie forward. Keep happy and get some rest when possible, All will be well once he is home. Good Luck Karen and Jim Love WinB143 xx Quote Link to comment Share on other sites More sharing options...
Macca Posted October 1, 2012 Share Posted October 1, 2012 Hi Karen, Welcome to BTG. This is the first I've seen of this thread. I am so close to you, I live in the Salford area and I know Tameside well, so I know the hospital of which you speak and I can't put what I think of them in writing on a forum such as this. There are some great people in there, but the management appears to be poor. My heart goes out to you and Jim, it can't be easy for you. I had my SAH two years ago now. I am still recovering although I am back at work now. It was and is a long slow process, so perseverence and patience are two virtues you need in abundance. Keeping a diary is a great idea, not only for Jim, but for you. It is easier to see the progress when it is written down and can be a tremendous boost when you think things are moving too slowly or that you have hit a brick wall. Don't be afraid to complain, but be mindful that it can be a double edged sword. You want to jog them into better action and help not alienate them to the extent they start taking things out on you. Try the reasonable common sense route first and then if that doesn't work, let them have both barrels. Jim has undergone a terrible ordeal, it does not need to be compounded by poor care from those who are supposed to be expert and professional in these matters. Remember, Jim is still a human being, you and he have put an awful lot into the health system that pays their wages. It is not too much to expect a little back from that service now that you are in need of help. When I came round from my coma, I was talking gibberish and shouting at staff for two or three days afterwards but thankfully I came out of it in the end. I didn't have to have a shunt either, but I did have the onset of hydrocephalus, but that threat also receded after the third go at a lumbar puncture. I wish you and Jim well Karen. Macca Quote Link to comment Share on other sites More sharing options...
karened50 Posted October 1, 2012 Author Share Posted October 1, 2012 thanks jane for that advice i will look into the somerset thing tomorrow, am so tired been with jim caring for him most of the day, boy do i need my rest now. jim does have a book with laminated pics in but everytime i show it to him he looks at it and gives it me back. keep on trying though. well letter went in today from dear rachel so we will see what they are like tomorrow. one thing i did notice today just before i was leaving was 4 cleaners on jims ward, now he has been in this hospital for 8 weeks and i can honestly say with my hand on my heart that i have NEVER seen a cleaner on the ward so theres a surprise, funny but you dont think about these things until you actually see them. i had a lovely day with jim today, he got a bit agitated when it got to 4.30pm cos all the afternoon visitors had gone and i think he was a bit concerned as to why i was still there even though i have explained to him several times what i am doing for the next 2 weeks, so i said "do you want me to go jim" "yes" he said so off i went for a bit of fresh air (and a fag) lol and when i went back in he was fine. took some games in with me today, frustration (ha ha) connect 4 and a dart board game, jimm went out every sunday afternoon for a game of darts with his friends, not sure if it was a wise move as he got a bit weepy, dont know if it was the darts or the frustration game as we used to play that with the kids when they were young, will try again another day. NOW FOR MY BIG NEWS, whilst i was there today jims friend phoned me to see how he was, i gave jim the phone and what happened next truely amazed me, he said "hello" 3 times and i cant explain it but jim is a very happy friendly man and always answered the phone in a sing song voice and very loudly, i always said you dont need a phone just stand at the front door and the whole of manchester will hear you, then the conversation continued, he said okay, yes, righty o, and another one of his favourites okey dokey then said okay bye. well i could have cried, this is the most and the clearest he has said anything in the whole 3 months. i was exstatic, jim put the phone down and mike phoned me straight back in tears, he said dont tell me that was jim yes i said, he was crying his eyes out, they have been best friends for 38 yrs and he said i never thought i would ever have a chat with my mate on the phone again. so thats it now i am going to get someone to phone me every day so i can give jim the phone and see if it helps he get a bit of confidence back. has anyone else found that they could talk better on the phone rather then face to face? Macca we were in your neck of the woods when jim first got poorly, he was transfered to salford royal from tameside hosp. within a couple of hours of him having his brain heamorage, he was there in critical care for 5 weeks, how i wish they would have kept him there they were marvolous with him but once he was stable they transfered him back to this s**t hole. thanks everyone for taking the time to read and answer my notes, i really love coming on here now to read and see progress of the stories on here. think this will be my lifeline. can you hear that????????????????????/ my bed calling me x karen xxx Quote Link to comment Share on other sites More sharing options...
kempse Posted October 2, 2012 Share Posted October 2, 2012 Hi Karen, I've not said hello before, but have been reading your thread and was so thrilled for you when I read about Jim's phone conversation with his friend. I can just imagine what a boost that gave you. I hope Rachel's letter has the desired effect and his care improves forthwith. It appears Jim is getting excellent care from yourself and it's great that you've still had some energy left to come on here at the end of day. Best wishes to you both, Sarah Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted October 2, 2012 Share Posted October 2, 2012 Karen, reading about Jims phone call brought a lump to my throat - fantastic news Michelle xx Quote Link to comment Share on other sites More sharing options...
cathmat Posted October 2, 2012 Share Posted October 2, 2012 Hi Karen i havent commented before but ive been reading your thread , that was great news about jims phonecall must have lifted you up no end , Just remeber to look after yourself and get plenty of rest. After my sah last november i was very short but only with my mum i think i drove her to distraction, i probably still do lol. Take care love to Jim . Cath X Quote Link to comment Share on other sites More sharing options...
Winb143 Posted October 2, 2012 Share Posted October 2, 2012 Been off for a day Karen but it was lovely to hear how Jim spoke to his pal on the phone ahhhhh! My husbands pal rang and I said "hello Mark so you are a Grandad now " Then I cracked a funny to him...he was shocked that I sounded like my old self and said how pleased he was that I had progressed so much. It made me feel good in myself (good job he never saw me in nightie and no make up etc..lol). Jim will progress with help mainly yours so keep getting rest....I am happy for you both, but why does the system let us down !! Passes boxing gloves to Karen round two now come out fighting ... Good luck to you both xx Love WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
karened50 Posted October 3, 2012 Author Share Posted October 3, 2012 Hi, well it certainly worked, had a phone yesterday before I went to the hospital from PALS, she was disgusted and very angry at the treatment jim has had from some members of staff, she asked me if i wanted to make a formal or informal complaint, i said informal cos all i want at the end of the day is for my jim to be treated with respect and dignity. She went onto the ward and spoke to the people concerned and it has worked a treat, the sister who i have been having most problems with (margaret) was on the ward yesterday but i think she has been told to keep away from both me and jim, never even made eye contact, the manager of the ward (shirley) was constantly asking me if i was ok and how was jim, she also said to me "i have been watching you care for jim and i know you wont have a problem with him when he goes home you are marvellous with him, hmmmmmmmmm, i never said i would, it was you that said i would, muppet. She said make sure you ask us if you need a hand with him, it always takes 2 of them to change jim but he helps me so much when i am changing/washing him that i can do it on my own no problem. He has been amazing the last 2 days i have been there and now i know i was right about the stripping off, he was asleep and wet himself, he woke up and went to take his undies off, i said have you wet jim? Yes he said, so i helped to to change his clothes and bedding and the problem was evaded. i had a feeling this was why he was doing it as when i am there he never does it cos i change him straight away, obviously they can t be there with him all the time so its a case of i am wet so strip off. now i think instead of this being the inappropriate behaviour they say it is i would say this is more appropriate behaviour as he is telling them in his own way i am wet. So off i go again today, dont know about jim but i am getting more confident by the day bye all karen x:biggrin: Quote Link to comment Share on other sites More sharing options...
Daffodil Posted October 3, 2012 Share Posted October 3, 2012 Hallelujah! Karen that is good to hear that they are listening, responding and that your lovely man is getting some better care as he deserves. You've done great! Quote Link to comment Share on other sites More sharing options...
kristine Posted October 5, 2012 Share Posted October 5, 2012 Hi Karen I am new to this site but seeing your thread I just had to reply. I had a brain hemorrhage and had to have brain surgery. I was on a ventalator and I also had a drain in my head, I was very ill and in intensive care. I was in hospital for 3 months, they had a wheelchair especially made for me as I assume they thought I would need it. I came out of hospital with an eye patch due to doube vision and a shaved head and had a zimmer frame. I live on my own and it has been very hard work. My right side was affected and because I am right handed this made things more difficult. I did keep a diary when I got a treadmill and it has also helped with my writing as I try to use my right hand. It is good to look back and see how I have improved on my treadmill, and the treadmill has helped my mobility. I would recommend keeping a diary as looking back I had so many goals,like washing my own hair, and putting washing on the line it would have been good to have wrote down when I achieved my goals. Or it would be good if you kept a diary if your husband doesn't. I had my brain surgery in Jan 2011 and I have come such a long way since then, someone told me it's like a hand granade going off in your head and you have to wait for everything to settle down, which is so true. Things will get better it just takes time believe me. Quote Link to comment Share on other sites More sharing options...
karened50 Posted October 6, 2012 Author Share Posted October 6, 2012 thanks for all your replies they certainly make some interesting reading. i can finally see the light at the end of the tunnel. had a couple of really good days with jim no agitaton or taking clothes off or throwing beeding on the floor. we have had a few laughs and a few cries but lots of kisses n cuddles as well. what i would'nt give to hear him tell me he loves me something he did every single day, hey but as long as i know he does it dont matter. a few new words one of them being "karen" i laughed and said ohhhhhhh what have i done now cos you only call me karen when i am in trouble lol. steven was another one (eldest son). he was trying to tell me something tonight and just could'nt get it out so i said shall we try a pen and paper jim, yes he says so i give him a pen and paper and i dont know if it was what he meant to spell it but he wrote i MOAN strange but probably true, then tried him with a alphabet sheet and spelt out mine and jims name by pointing with a pen, asked jim to do the same and he was pointing at random letters, we'll get there in the end NOW FOR SOME WONDERFUL NEWS got a letter of our insurance company THEY ARE PAYING OUR MORTGAGE OFFFFFFFFFFFFFFFFFF over the moon is an understatement, i have genuinely been thinking about selling the house and buying a smaller one out of the proceeds as i would have been heartbroken if we had lost the house with both of us no longer working. i can see my jim getting stronger by the day got a meeting with the stroke co-ordinator on monday so am hoping they say he is ready for coming home, am not niave and know i will have my work cut out, no walk in the park but in all honesty if this last week is anything to go by i know i will mange well after all have had no help (nor wanted any) from anyone at the hospital this week, i can wash n change jim and his bed in about 5mins (not bad for a n old girl), have been toileting jim every couple of hours and the accidents are now few and far between mind you it might have something to do with me having a giggle with jim when i am washing and changing him make him laugh when i get the wet wipes (freezing cold) and slap em on his bum lol the language of him at this point is very choice (he is giggling like a naughty schoolboy at this stage) and i tell him carry on matey and i'll use more of em ha ha sleep tight all karen x:crazy: Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted October 6, 2012 Share Posted October 6, 2012 As always, lovely to read your updates Karen! Brilliant news about the insurance company Now you can concentrate on helping Jim to get better. Fantastic Michelle x Quote Link to comment Share on other sites More sharing options...
karened50 Posted October 10, 2012 Author Share Posted October 10, 2012 I'M SO EXCITED AND I JUST CANT HIDE IT JIMS COMING HOME ON FRIDAY YEAHHHHHHHHHHHHHHHHHHHHHHHHHH been a few busy days getting everything ready for my big jim coming home. new kitchen nearly finished, well at least i have a sink n cooker n hob lol bit nervouse now, any suggestions, i will be sleeping in the same room downstairs as jim, well bang goes my lovely lounge, and i am stressing out a bit, what can i get for jim to let me know if he wakes in the night, i am worried cos he cant talk that he will be lay there awake and i dont wake up, probably worried for nothing as i have never been a deep sleeper. have added some pictures of ga gad jim with our new baby grandaughter "libby rose" shes adoreable. will try and get on again when jim is home thanks for all your lovely messages of support i just wish i had found this site sooner. paul i have been reading your story about lin, had me in tears i can tell you, glad she is on the mend and you are both enjoying your time together. karen xxx:razz: Quote Link to comment Share on other sites More sharing options...
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