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Sorry just fancied a rant ......


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My husband has now been in hospital for 7 months now. The last two in the the rehab unit. Had SAH on 10 April. Clipped on 13 April. Two weeks later second bleed from same aneurysm: either the clip had malfunctioned or the surgeon hadn't caught the full thing, which was then coiled. Things went downhill rapidly after that. Two bouts of pneumonia and a dvt.

Anyway having been through the mill we then arrived in the PDRU unit. Now physically doing great. Buzzing round with a zimmer and moving about without it although this greatly upsets the nurses as they say he is now more of a danger and an auxiliary has to be with him all the time. I'm there every day for most of the visiting time ie 1.30 until 8.30.

We are now waiting for an assessment to see if he can go to another unit as they feel he needs more cognitive/memory help as it is more of a physical rehab unit he's in.

About three weeks ago he had a UTI and then he was still very sleepy/confused. They then discovered his phenytoin levels (he's on three anti seizure meds at the moment) were very high. They have stopped this med (he still on the other two) and he is so much better. His speech is great, he can read, write and draw (he took part in an art class and I was so amazed at this effort - he's never been that artistic in the past).

He's definitely remembering more things now and can follow/participate in conversations however he still will not acknowledge that he's in a hospital despite me reminding him 10 times every day. Also the nurses were saying his behaviour has got worse and can be quite verbally aggressive to them but I think he's just now getting so frustrated as he's now anxious to leave and is always trying to escape. Quite honestly sometimes I think I would be better just bringing him home.

However I do worry that the two things he seems to remember the most is that he wants a cigarette and a drink (the former he didn't do much but having been in the pub/leisure trade all his life drink is a major issue).

I also feel that the rehab unit have slightly written him off in so far as I had to remind the speech therapist that he hadn't had a session with her for a while. We did discuss day passes at the last meeting with his consultant but he thinks its too early and I have already warned him that I think if my husband gets out he will not go back.

Sometimes he seems so normal and will be his usual self quick witted and joking and then he will either go off on one or start talking about animals! I also have my doubts about the anti seizure meds which he is still on and if they are having an effect (keppra and lacosamide) however the neurologist have said they will not review this until the 12 month mark.

We're just about coping but I feel so sorry for my kids (15, 19 and 21) who have been great but its so hard for them. Apologies for the rant as I feel bad as its not me going through it but just wondering if anybody out there has had similar experiences xx

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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

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Tricia,

Just because they have written him off, show them they are wrong.

My husband was told by physio team "Best if you put her in a home" and they gave up on me.

My hubby said "No Way" phew thank goodness he did.

I had hydrocephalus and I had a shunt fitted and now I am fighting fit.

I also thought my Dad was alive and then one day it hit me. he died in 1999

Walking is slow but I can walk and hold a conversation and I sing (Poor family).

I know it is hard for the family but never give up xx Sing to him, show him photos, I know it's hard but he is there.

(Even if like me he was in dreamland for a while.)

Keep going and get rest also as we are tiring xx

Good luck on hubby's recovery. Never give up. Rant away xx

Love

WinB143 xx

Edited by Winb143
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Thanks so much to all you guys. Feeling much more positive. Had a good day today. When I asked him where he was he said "in the hospital" which is a first and the speech therapist said that he told her all about his brain injury today which is the first time he's said this to her. Also he told me he was having flashbacks. Much more relaxed today xx

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So pleased for you Tricia and hubby xx

See he will get there, it's a long process but the brain is clever it shuts down when we are tired.

Keep positive and smile, easier said than done though xx

You can do it along with hubby and family xx

Good luck !!

Love

WinB143 xx xx

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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 :biggrin:

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