hwyaden

thanks peeps. i've got two a.m.'s chasing the health board now to see what's going on re. our complaint.

Hubby is doing really well since I was logging in here every day. We're still waiting for an outcome of the complaint against UHW Cardiff and have now got our Assembly Members involved as the hospital just keep ignoring me. Conrad should have had his 6 month check up back in June but only now has he got an appointment for the end of September and that has taken many phone calls and emails to sort out. Conrad is walking much better now but the pain he gets on his bad side gets him down a lot. His aphasia is improving all the time and he's getting more confident in speaking to people, and not minding so much when they can't understand him. He's managed to get his full PIP award after waiting since January so he went straight out and sorted a mobility car so we won't have to struggle with our old banger any more He tells me more and more about the hospital each day, and new things I have learnt are that they used to shower him in cold water if the hot had run out, take his meals away because he couldn't eat with one hand, shout at him because he couldn't see things next to him (he has right-sided hemianopia) and wouldn't take him to the toilet when he asked, leaving him wet and unplugging his buzzer. He's very traumatized since his stay and I wish I could make it all go away for him. He asked me to post his point of view about the stroke on here as he hopes it will help someone else who is caring for a loved one going through the same thing. He says he remembers little of the days after he came out of his coma but what he does remember is the need to fight to wake and stay alive so that he could see me and the kids. He says he was terrified that if he let go and died then that would be the end, he would never be able to see us again and that's what kept him going through the whole thing. So if anyone is caring for someone in those early dark days never forget that even if they are unconscious they are thinking about you and loving you and fighting their way back to you. Never give up hope, they are still in there somewhere. I was told so many times to prepare for the worst, that he wouldn't come home, that he would end up with terrible disabilities and he's proved all the doubters wrong. I'm so very proud of him I could burst.

thankyou

thanks peeps

who could do that? would it be the gp?

sorry for my long absence on here - it's been a long time since i had a chance to log in since hubby came out of hospital (well, since i kidnapped him ) he's doing really well despite some awful disabilities. he has right sided weakness, severe aphasia and right sided hemianopia and double vision. the thing causing him the most problems right now is the pain on his right side. he describes it as stabbing and cannot sleep well at night because of it. the sites of pain vary from day to day but it's usually his right eye, right foot, right groin and inner thigh and his face on that side. he was on gabapentin but he hated the side effects and came off them some months ago so he's only taking co-codamol right now for the pain. i've tried heat packs, ice packs, rubs, creams etc but nothing seems to ease it when he's having a bad bout. he's got a check up with the consultant next month so i'm hoping he can come up with some ideas but i'm wondering if anyone on here has any tips for coping with the pain day to day. gail

no apology needed - i could feel your anger pouring out in your post and you have every right to feel like that, given what you and your lovely wife have been through. i've heard from the hospital - they've given me a named person to help me through the complaints procedure so i'll keep you posted. best wishes to all of you - you're such a fantastic bunch of people, oh and win - the leader of the local stroke group is a singer and bursts into song at the drop of a hat - you'd get on well with her

it's been a busy couple of months. to cut a very long story short my husband learnt how to use his mobile phone and it was only then that we realised how much he was being neglected in hospital. he hadn't had an eye test, physio, occupational therapy or anything and we were told he would move to a rehab hospital nearer home when a bed was available. he spent weeks sitting staring at the floor waiting to be moved, then we found out someone hadn't sent in the relevant paperwork for him to be transferred. hubby was begging to leave hospital so we picked him up. the hospital phoned our gp and ordered her to come round our home and see hubby, to have him sectioned and to ring the police for me to be arrested for kidnap of a vulnerable adult! g.p. said he was fine and said the hospital had really ****** up by neglecting him for so long and were running scared. he's been having different therapies as an outpatient at our local hospital and he's a different man from the scared, confused one that came home a month ago. they said he wasn't of sound mind and couldn't make decisions for himself, yet yesterday he instructed our daughter while she rebuilt her broken computer. they said he couldn't walk yet he shoots round the town like a 3 year old. they said they didn't know what was wrong with his eyes, and we now know he has hemianopia and has lost 50% of his vision. he now has a white stick and is learning to cope really well. the staff had often called him stupid and said he couldn't communicate, but he's now having speech therapy for severe aphasia. i started massaging his right hand and arm when he came home as his hand was tightly clenched. when he first started to open it his skin was soggy and wrinkled as if he'd been in the bath too long. the doctor in our local hospital said if we hadn't have got it open when we did it would have stayed clenched permanently. he's going to meetings with other stroke survivors and learning to read and write again. he's come so far in such a short time. i have put a huge complaint report in to hospital in cardiff outlining all the things they did wrong, which included throwing his medication in the bin when he hadn't taken it (i witnessed that myself), not taking him to the toilet when he wanted, leaving him sitting in the day room for hours on end when he couldn't make himself understood to anyone, not helping him eat his food, losing his personal items, shuffling him round from ward to ward when they got overcrowded and many many more things. i'm sure as his speech improves we'll find out a lot more things that went on there. i'm horrified at how he was treated compared to the care and attention that he's received locally. the doctors in cardiff spoke to him like he was a small child - he can't believe that the people he meets here speak to him like a fellow adult and immediately understand the difficulties he has with speaking.

wow - scary stories!!!! had a chat tonight and apparently they were waiting to do the angiogram when he was more compliant as they didn't want to give him another general anaesthetic. they're pretty confident the coiling will do the trick so it's just a matter of waiting until next week now. they also gave him a scan today to see if there was any reason for his double vision. he's got a patch on his eye today so he can see

do you think the signing of the consent form has anything to do with the delay? does the patient themselves have to sign it? only hubby hasn't really been 'with it' enough to do that until now.

i hope it works. they've told him the worst case scenario is more brain surgery to do clipping so now he's convinced that that's what will happen. his bi-polar hasn't been bad at all since he's been in the hospital but i can see he's at risk from an episode with all the stress this is putting on him. i don't often wish time away, but i wish it was next week and the whole procedure was over and done with.

thanks all - i'm waiting on a phone call from the vascular specialist and i'll ask her why it's taken so long. hubby is devastated that he's not moving nearer to home just yet and can't understand why they won't just let him go. i keep trying to explain that this will hopefully stop any further trouble in his head but he just doesn't understand enough about it yet.

hubby had his intra-cerebral bleed 3 months ago and he had a blood clot removed from his brain, but no coiling or clipping was done. now we're waiting for him to be moved closer to home the hospital has done an angiogram and have found the aneurysm which needs attention. they said they'll try coiling it sometime next week and if that fails then they'll go inside and clip it. i'm kicking myself for not asking the doctor this afternoon why they've waited until now to give him the angiogram and do something about the aneurysm -he's been in hospital for so long so i don't understand why they've left it so long. has anyone else experienced anything like this?

hi and welcome

really good news!!!! i spoke to the nurse this morning that told me just over a week ago that hubby would be in hospital for a year or more and that we should curtail visitors as he was getting violent. she said he's like a different man this week and i felt very smug and felt like saying 'i told you so. he just needed that ****** trachy out.' let's hope your hubby keeps making these little jumps of improvement

my hubby is very confused - he talks in a strong welsh accent which he lost years ago, he thinks his dad lives in the house he left in the mid 80's and he mixes up all his favouite computer games with reality. yesterday he told me he'd tried 3 times to save me from the tomb and the 2 headed man but he didn't make it and i ceased to exist! he constantly rambles about hamsters escaping and gangsters coming to kill him because he owes them money, and they're going to kill me too apparently. his expressions are really over the top, he's much more animated than he ever was before. luckily the kids all find the whole thing hilarious and are very entertained by their new funny dad i suppose this stage doesn't scare me too much as my mother had a stroke when i was a teenager and we went through the same thing with her - she's in her late 80's now and fit as a flea so try not to worry, it will pass xxxxxxx

lol - has she been doing ward visits?

i can fully understand your frustration. my husband is extremely frustrated being in hospital and i'm sure it gets to the point where they just need to be in familiar surroundings to make more progress. hubby is still being tube fed and isn't walking yet but as soon as all tubes are out i'm going to be pushing for him to either be moved to hospital closer to home or to come home (my preference). he constantly asks me to break him out of there and keeps plotting elaborate escape plans. he's not making much sense at the moment - he keeps talking about hamsters and gangsters and getting his computer games mixed up with reality. i've also noticed that hubby has a really strong welsh accent, something he hasn't had since he was a teenager - also he thinks his dad is still living in the house he left in the mid 80's so i wonder if your hubby's hankering for drink/cigarettes is a similar kind of 'living in the past' that he will sort out in his mind in time. he obviously can't be craving cigarettes after all this time but the memories of smoking must be really strong. it's so hard to watch them in such a state. hubby too has to have an auxiliary with him 24/7 or he'd be off out the doors on his hands and knees. your kids are at a good age for understanding how things are so try not to worry about them. it's really hard on you as you probably feel powerless. i wish i had some good advice but all i can do is commiserate with you. i know i'll probably never get my old husband back but i just want the new one back home so i can look after him xxxxxx

what a busy visit tonight!! hubby was talking 10 to the dozen but is very confused. he was telling us how he's going to be dead in 72 hours because the gangsters are coming to kill him. he's also let all the hamsters go. when we got there he was on the phone trying to ring me (but was actually talking to the remote control for the bed). it's going to be a fun ride from here on in :biggrin:

hi julie, welcome

yes miss!!

ha ha - i think he'd gladly chase the one who was looking after him yesterday, he seemed very taken with her

what a difference a couple of days make!!! when we saw hubby on sunday he was angry, agitated, unco-operative and we had to leave early. today it was like someone had flicked a switch on in his head!!!!!!!! he was jabbering non-stop for two hours. unfortunately i couldn't understand a word he was saying most of the time but it didn't matter - it was so lovely to hear him talking and watching his facial expressions when he talked was so funny as he was really animated! he had his trachy out today and you could still hear air going through the hole so i guess as that heals his speech will get clearer. they'd also taken his mitten off and let him sit on the edge of the bed. they're trying him with food and drink tomorrow

awww i long for that day - will be looking out for a yogurt pot

thankyou - i will try to chase up the doctor. some news - i phoned today and they said he seems to have turned a corner communication-wise. he's no longer ignoring the staff, he's starting to interact with them and he's asking for the toilet. they've put a cap on his trachy so he's breathing by himself. i didn't get to see him today as his mother went so i can't wait until tomorrow's visiting!! i wonder if his increased aggression and awkwardness were anything to do with him having a leap in his recovery? it will be interesting to see how his moods are in the future just before he makes progress. they tested him to see if he could eat today and he's not quite ready yet, and also the psychiatrist saw him and said he's very happy with how his bi-polar is going.