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hwyaden

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hwyaden last won the day on September 20 2014

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    Welsh Valleys
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    Carer

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  1. thanks peeps. i've got two a.m.'s chasing the health board now to see what's going on re. our complaint.
  2. 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.
  3. who could do that? would it be the gp?
  4. 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
  5. 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
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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?
  12. it's that love and devotion that's keeping her going! how is she right now? has she got over the operation? let's hope she won't have to have any more and can put her energies into getting better each day. xxxxxxxxxxx
  13. i think she's gone back to the home she's been staying in, but i'm waiting for the day when she goes home with paul for good
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